Hospital-Based Palliative Care on the Rise in California

A brief item from Friday's San Jose Business Journal about the rise in hospital-based palliative care:

Hospital-based palliate care programs, which have a goal of helping patients with serious diseases live more comfortably, are quickly growing in popularity, according to a report released Thursday by the Oakland-based California HealthCare Foundation.

More than 90 percent of California’s 111 programs surveyed by the foundation were started since 2000, with 64 percent started since 2004.

Medicare Hospice Protection Act of 2008

Ten members of Congress have introduced the Medicare Hospice Protection Act of 2008 which would delay a new Centers for Medicare & Medicaid Services (CMS) rule from going into effect for one year. The National Hospice and Palliative Care Organization (NHPCO) and their advocacy arm, The Alliance for Care at the End of Life, have argued the rule change would effectively cut hospice Medicare reimbursement rates. See more information on NHPCO's website.

Palliative Care Provides Savings for Hospitals

A recent study reported in the Achives of Internal Medicine said that hospitals using palliative care teams save an average of $300 per patient per day. This post from the New Health Dialog Blog provided excellent coverage of the study:

The paper in the Sept. 8th edition of the Archives of Internal Medicine by Dr. Sean Morrison of the Mt Sinai Hospital and the Center to Advance Palliative Care and colleagues matched palliative care patients to "usual care" patients. The palliative care patients who were discharged alive had an adjusted net savings of $1,696 in direct costs per admission, or $279 per day. Amongst those who died, the adjusted net savings were higher, $4,908 per admission, and $374 per day. The savings came from reductions in laboratory work, intensive care cost (and for the patients who died, pharmaceuticals.) The team checked to make sure that the savings could be attributed to palliative care, not to a clinical course of action already determined before the palliative care team got involved with the case.

Lawsuit Filed to Stop New CMS Rule on Hospice Reimbursement Rates

On Friday, September 5, the National Hospice and Palliative Care Organization (NHPCO) filed a lawsuit asking for an immediate injunction to prevent a Centers for Medicare & Medicaid Services'(CMS)rule that changes Medicare reimbursement rates for hospice.

View the latest proposed wage index for FY2009 here.
View NHPCO's response to the proposed rule here.

CMS Holding Next Home Health, Hospice and Durable Medical Equipment Open Door Forum

From the Medicare Update blog:

The Centers for Medicare & Medicaid Services (CMS) will hold the next Home Health, Hospice & DME Open Door Forum at 2:00 p.m. (ET) on September 17, 2008.

There are 2 ways to participate in the Open Door Forum. To participate by telephone, one must dial 1-800-837-1935 and reference conference ID 58369938. To participate in person, RSVP and security clearance is required. One must RSVP by 2:00 p.m. (ET) on September 15, 2008 to HOMEHEALTH_HOSPICE_DMEODF-L@cms.hhs.gov, and include your name, organization, phone number, and the words “Home Health” in the subject line. The Open Door Forum will take place at the Hubert H. Humphrey Building, 200 Independence Avenue S.W., Washington, D.C.

Beginning 2 hours after the Open Door Forum, CMS will also make an audio recording available. To access the audio recording, one must dial 1-800-642-1687 and enter the conference ID. The recording will expire after 3 business days.

Profile of Four Hospice Social Workers

This nice article from a local paper, The Phoenix (PA) profiles four hospice social workers and describes how their professional and personal backgrounds steered them to hospice work.

Jackie McIntyre, Peggy Graf, Jeniffer Flamish and Vickilyn Zazo-Nagy understand clearly that death should be seen as a part of life. They are all social workers at Life Choice Hospice and, while none of them entered this field expecting to work in the specialty of hospice, they all believe they have found their ideal profession and see it as an honor to be with patients at the end of their lives.

Hospice Therapy Dogs Visit Patients

This article from The Bolingbrook Sun describes the role of hospice therapy dogs in calming patients and providing a friendly vistor.

Patty Kaplan, a registered nurse, founded Paws 4 Therapy Inc. with the hopes that the program could assist the patients in acute care. She is the director of the program at Edward.

By 2007, the hospital had one of the largest animal-assisted therapy programs in the country. More than 100 dog and handler teams visit patients daily at bedside.

"I think the biggest thing is that it serves as a diversion from their illness," she said. "It's calming, and for those patients that are lonely it may be the only visitors they get."

"It's a piece of home."

Questioning Cancer Therapy

The New York Times' Jane E. Brody addresses the tough decisions involved in choosing a treatment plan for cancer in this article last week.

Specialists in ovarian cancer from University Hospitals Case Medical Center in Cleveland described a study of 113 patients with ovarian cancer in the journal Cancer in March.

“Patients with a shorter survival time,” they found, “had a trend toward increased chemotherapy during their last three months of life and had increased overall aggressiveness of care [but] did not have improvement in survival.”

The team concluded, “Our findings suggest that in the presence of rapidly progressive disease, aggressive care measures like new chemotherapy regimens within the last month of life and the administration of chemotherapy within the last two weeks of life are not associated with a survival benefit.”

With aggressive therapy, the majority of the women in the study who died did so without the benefit of hospice.

Dr. Thomas J. Smith, an oncologist and palliative care specialist at the Massey Cancer Center of Virginia Commonwealth University, said in an interview that patients needed to understand the tradeoffs of treatment.

“Palliative chemotherapy, which is what most oncologists do, is meant to shrink cancer and improve the quality and quantity of life for as long as possible without making patients too sick in the bargain,” he said.

The Cleveland team pointed out that the treatment goal can, and should, change. “There is a difference between palliative chemotherapy administered early in the trajectory of disease and near the end of life,” the researchers wrote. “The goal of end-of-life care should be to avoid interventions, such as cytotoxic chemotherapy, that are likely to decrease the quality of life while failing to increase survival.”

In fact, those who choose hospice over aggressive treatment often live longer and with less discomfort because the ill effects of chemotherapy can hasten death, Dr. Smith wrote in a review of the role of chemotherapy at the end of life, published in June in The Journal of the American Medical Association.

Some patients are just unwilling to acknowledge that nothing can save them, and want toxic treatment even if it means only one more day of life.

And sometimes patients are reluctant to relinquish treatment because they are terribly afraid of dying, of being alone cut off from care, Dr. Smith said in the interview. Patients may fear, with some justification, that if treatment stops the doctor will abandon them.

It is not only patients and their families who may insist on pursuing active treatment to the bitter end. Sometimes, doctors subtly or overtly encourage it. Oncologists may be reluctant to acknowledge that they can no longer sustain a patient. They may fear destroying a patient’s hope. Or they may be covertly influenced by the fact that their income comes from treatment, not from long discussions with patients and families about why palliative therapy should yield to supportive care.

In a related article, Brody shares a list of questions that patients who are considering palliative chemotherapy should ask their oncologists.

NHPCO Urges Congressional Intervention as CMS Finalizes Rate Cuts

The Centers for Medicare & Medicaid Services (CMS) issued its final rule on the hospice wage index for fiscal year 2009. According to the National Hospice and Palliative Care Organization (NHPCO), this regulation will cut hospice reimbursement rates by phasing out the budget neutrality adjustment. The new Medicare reimbursement cuts will be implemented on October 1. NHPCO is encouraging hospice advocates to learn more about what these rates cuts will mean, and to connect with their representatives over the August Congressional Recess to ask them to intervene before October 1.

Call For Recognition Of Palliative Care And Pain Treatment As Human Rights

On Monday, August 4, a Joint Declaration and Statement of Commitment calling for the recognition of palliative care and pain management as human rights was presented at the XVII International AIDS Conference in Mexico City. The International Association for Hospice and Palliative Care and the Worldwide Palliative Care Alliance were among the signers, including representatives of regional organization from Africa, Latin America, Eastern and Western Europe, Asia, and North America.

The seven goals in the Declaration are:

1- Identify, develop and implement strategies for the recognition of palliative care and pain treatment as fundamental human rights.

2- Work with governments and policy makers to adopt the necessary changes in legislation to ensure appropriate care of patients with life-limiting conditions.

3- Work with policy makers and regulators to identify and eliminate regulatory and legal barriers that interfere with the rational use of controlled medications.

4- Advocate for improvements in access to and availability of opioid analgesics (pain relievers) and other medications required for the effective treatment of pain and other symptoms common in palliative care, including special formulations and appropriate medications for children.

5- Advocate for adequate resources to be made available to support the implementation of palliative care and pain treatment services and providers where needed.

6- Advocate for academic institutions, teaching hospital and universities to adopt the necessary practices and changes needed to ensure that palliative care and pain positions, resources, personnel, infrastructures, review boards and systems are created and sustained.

7- Encourage and enlist other international and national palliative care, pain treatment, related organisations, associations, federations and interested parties to join this global campaign for the recognition of palliative care and pain treatment as human rights.

CMS Issues Final Rule on Hospice Wage Index for FY 2009

The Centers for Medicare & Medicaid Services (CMS) issued its final rule on the hospice wage index for fiscal year 2009. An accompanying press release describes the changes as providing an increase in Medicare payments for hospices. The rule takes effect October 1, 2008.

Hospices serving Medicare beneficiaries will see a 2.5 percent increase in their payments for 2009 according to a final regulation published today by CMS.

The increase in the hospice wage index is the net result of a 3.6 percent increase in the so-called “market basket” indicator of cost, offset by a 1.1 percent decrease in payments to hospices as CMS phases out a transitional payment to these providers.

As published in the Federal Register on July 31, CMS is phasing-out an adjustment to the hospice wage index that was put into place over 10 years ago to help hospices through a transition to the new wage index. Phasing-out this special adjustment will save Medicare $2.18 billion over five years. It is estimated that payments to hospices would decrease by approximately 1.1 percent for FY 2009, the first year of the three-year phase-out of the adjustment.

This final rule reflects the ongoing efforts of CMS to support beneficiary access to hospice services while maintaining responsible financial stewardship of the Medicare Trust Fund.

The National Hospice and Palliative Care Organization (NHPCO) has issued a press release arguing the changes in the wage index will result in a decrease in payments to hospices, and urges Congress to intervene before rule goes in to effect.

Cancer Patients Not Given Enough Information about the Survival Benefits of Palliative Chemotherapy

A study funded by Cancer Research UK and carried out at the University of Bristol of 37 cancer patients, showed two-thirds received little or no information about the survival benefits of having palliative chemotherapy before making a treatment decision. The study was published on bmj.com and discussed that palliative chemotherapy in patients with advance cancer has modest survival benefits, and tends to be months rather than years.

During the consultations, there was consistency in informing patients that a cure was not being sought for them, but the amount of information about survival benefit varied considerably.

Information given to patients about survival benefit included: numerical data ("about four weeks"); an idea of timescales ("a few months extra"); vague references ("buy you some time"); or no mention at all.

Only six patients out of 37 were given numerical data about the survival benefits of treatment.

For the majority of consultations observed (26 out of 37), discussion of survival benefit with patients was vague or it was not mentioned at all.

The researchers say there are concerns that the "intrusiveness of unfavourable numbers", in terms of months left to live, can undermine healthcare relationships and destroy hope.

They say: "Giving comprehensible and appropriate information about survival benefit is extremely difficult. In addition, the reluctance to inform patients of the limited survival gain of palliative chemotherapy may be motivated by a desire to 'protect' patients from bad news.

"However, the reluctance to address these difficulties and sensitivities may be hampering patients' ability to make informed decisions about their future treatment."

The researchers say oncologists and cancer teams have to communicate sufficient information to enable patients to make informed decisions based on realistic aspirations, but to do so in a sensitive manner and at the patient's pace.

They also recommend that oncologists receive training in how to communicate relevant information on survival benefits to their patients.

National updated information is needed about the prognosis of advanced cancer and the benefits of palliative chemotherapy as well as decision aids to help patients interpret information, say Daniel Munday and Jane Maher in an accompanying editorial.

Vigil Companion Programs - So No One Dies Alone

Vince Chiles

As a hospice social worker and supervisor, I have witnessed the myriad of family dynamics played out at the end of life. The love, the sadness, and the struggle for acceptance of an approaching death is seen through the relationship between husbands and wives, brothers and sisters, parents and their children. And then, there are those who outlive their support systems. They often find their way onto hospital wards in the last days or hours of life, and are literally all alone. Some may muster a request for companionship in the last moments of life from a nurse, who due to the constraints of her patient load, can only stay a moment or two before rustling off.

Such was the experience of Sandra Clarke, a critical care nurse at the Sacred Heart Medical Center in Eugene, Oregon. Ms. Clarke was asked to stay by a dying patient. She had to finish her other duties, and when she returned her patient had died. Troubled by this lonely passing Clarke was inspired to start ‘No One Dies Alone,’ a vigil volunteer program that provides companionship to those who have no one in the last moments of life.

Hospice volunteer programs have been providing vigil companions to their patients for decades in the absence of families when commitments or distance keep them away. But for hospice to occur the patient or a surrogate has to consent to the care. These faculties or resources are not always available to patients, who either through longevity of life, estrangement, or distance, have no one. Some of our most frail fellows are completely alone. That’s where programs like Sacred Heart’s ‘No One Dies Alone’ and other vigil companion services come in. They are volunteer programs that are often run by medical facilities whose mission it is to provide a compassionate presence to those who have ‘No One.’

The philosophy of the vigil companion programs is to provide an empathetic witness to the transition that occurs with death. They assert that because no one comes into life alone in the best of situations, no one should leave alone either. As a result of this care philosophy volunteers are available around the clock to sit with those who need this desperate company whenever necessary. Nurses are the eyes and ears of these services, identifying the need through their clinical insight and intuition. They notify the coordinators who in turn alert the volunteers of their duty. Volunteers may sit in silent reflection, play soft music, or provide a gentle touch of comfort. They are trained to alert the medical staff of any problems or concerns that might arise. The service may lesson the effects of complicated grief for distant family members or staff. Overall, vigil companion services reinforce the patient’s dignity and worth of companionship in this most vulnerable time. When provided well these services assure ‘No One Dies Alone.’

Reference: No One Dies Alone, Sandra Clarke, CCRN; Summer 2002 (Vol 8, No.3) Supportive Voice, the official newsletter of Supportive Care of the Dying: A Coalition of Compassionate Care.

Vince Chiles, MSW

Media Coverage of Hastened Death Provokes Discussion

We hesitate to post articles on subjects variously covered as euthanasia, ‘physician-assisted suicide’, ‘hastened death’, ‘death with dignity’ and other related subjects. Besides the obvious controversy, it doesn’t really touch on our primary concerns as hospice professionals. At HFA, we are concerned about educating the public about the benefits of hospice care, and educating hospice providers in their mission to improve the quality of life of a patient with a terminal illness. Hospice care neither prolongs life nor hastens death. Hospice care offers pain relief and control, comfort and dignity to the dying. At HFA, we believe that good hospice and palliative care can prevent a desire to hasten death.

However, sometimes we make an exception to our hesitation to cover these issues and Christian Sinclair, MD, who writes for the palliative care blog, Pallimed, has given us a reason to do so. Sinclair posted an international review of recent ‘hastened death’ cases that we did want to share, because Sinclair sums up the significance of these cases to hospice and palliative care providers so well:

So why is this all important to palliative care?
Because guess who thinks about these things:

• your patients
• their families
• medical professionals who consult you
  
• the public

and they may never bring it up with you for a multitude of reasons. Or they may hint at hastened death, but never start an open discussion. Or they may make a sly joke about it, waiting to see how you respond. Or they may assume what is good standard palliative care is really euthanasia.

Good hospice and palliative care practices can help people discover hastened death does not have to be the easy way out. If the lines are too blurred between the legal and illegal our field has significant trust to lose with the public and our peers. Being educated and aware of the public debate over hastened death is a responsibility for palliative medicine to ensure the safe, ethical, and legal care of the patients and families entrusted to us.

He ends the post with his “standard disclaimer” - Pallimed, Dr. Sinclair and his current and former employers and states do not endorse or practice euthanasia or physician-assisted suicide, but do encourage the open, non-judgmental discussion of these topics for educational and ethical discourse about this controversial area of medicine. Links do not represent endorsement – which makes a pretty good disclaimer for the Hospice and Caregiving blog, too.

Hospice Use in Maine Growing

The Bangor Daily News writes about hospice use in Maine, which ranks among the lowest in the nation. Reporter Meg Kelly tells the story of two patients in the service of New Hope Hospice, Dwight Smith, 75, who has lung cancer, diabetes and other conditions, and Dr. Robert Weiss, 90, who is dying from pulmonary hypertension. Weiss is pleased with the care he is receiving:

Every weekday morning a certified personal care provider from New Hope Hospice comes to visit Weiss. She helps him shower and dress, fixes his breakfast and cleans up the kitchen, makes his bed and tidies the bathroom. She leaves a light lunch in the refrigerator when she goes.

Once or twice a week, a registered nurse comes by — often it’s Valerie McDougal, the same nurse who checks up on Dwight Smith.

"I told her I was getting a sore on my right hip from sleeping on that side all the time," Weiss recalled. "She picked up the phone and that afternoon I had a new foam mattress. I’ve slept comfortably ever since."

He finds that degree of attention and responsiveness reassuring, and knows that as his disease progresses, the level of support from the hospice agency will keep pace.

"There’s a nurse on call 24 hours a day who will come here if I need her. She won’t tell me to call 911 and go to the hospital," Weiss said. "There is nothing I need they won’t get. I’ve never had more caring service."

Kelly reports that hospice use in Maine is growing, despite its low level of use compared to other states.

Maine is one of just a handful of states to require private insurers to include hospice care among the benefits they provide, thanks to 2001 legislation that also increased Medicaid funding for hospice and paved the way for the building of Maine’s lone residential hospice facility, which is located in Scarborough.

Hospital Ethics Teams Raise Concerns

On June 25 The Wall Street Journal published an article about the increase of ethics consulting services at hospitals and the qualifications of those professionals to deal with care issues at the end of life.

. . . The complex ethical issues arising from new life-prolonging medical technologies are throwing up new challenges. And hospitals face potential legal liability if patients and families feel they haven't been properly counseled or provided with all the information they need to make decisions.

"Hospitals would never permit staff to engage in medical procedures for which they are untutored, untrained and unsupervised, but there are less-than-qualified persons intervening in serious ways in the lives of patients and families" on medical ethical issues, says Nancy Dubler, director of the bioethics program at Montefiore Medical Center in the Bronx, N.Y.

The article was discussed on the Quality of Life Care blog, which offered a different solution to assist families dealing with these difficult decisions - call your local hospice. Deanna Cochran, RN, BA, CHPN writes:

The article discusses how ethical committees and consultants in hospitals are being criticized for not being trained enough to talk with families regarding end of life issues. When I read this article, what I thought about is that hospice team members have these talks daily in their practice as a matter of course. We are part of family meetings where all kinds of difficult and emotional topics are discussed.

I’m not a trained ethicist or counselor. Neither are hospice nurses, doctors, social workers or chaplains who deal in this level of care daily. What we do know is end of life issues and how the body works at the end of life and we do have the time to talk about all of it. Time to educate is built into the system of palliative care.

Round-Up: Travel Tips, Dementia Study, Hospice Music and the Perfect Conversation

Some articles, posts, and items of interest from around the web collected from the past couple weeks:

• The Caregiving Solutions blog offers tips about traveling with elders and the disabled. Preplanning is essential to the process and wellness coach Pamela Larsen Schroeder offers some good advice caregivers should think before their trip.


• From the Changing Aging blog - "HealthPartners’ research foundation and the Center for Spirituality and Healing at the University of Minnesota are recruiting participants through the summer for a study that will seek better means of stress management for people who are caregivers to a family member with dementia. To learn more or sign up, contact Dana McGree at 952-967-5031 or dana.a.mcgree@healthpartners.com."
  


• The Boston Globe offers a review of a new release of 'hospice music':
  

  The title of classical guitarist Marcia Feldman's new CD, released June 17, is "Between the Worlds." Perhaps no idea could better sum up the unique realm that Feldman's music inhabits. She is a hospice musician - a performer who plays tunes to soothe the dying. The worlds she refers to in the CD's title are those of life and death, and her music is designed specifically to ease the transition from one to the other.
  
  It's an unusual niche, to be sure, but one in which the Dedham resident has long felt comfortable. Trained in classical guitar and jazz vocals at Berklee College of Music, Feldman first began thinking about the connection between death and music when she lost her father 20 years ago. "His situation did not involve hospice care; he died suddenly," she said. "But something about the process of grieving for him made me think increasingly about the role music plays at our most troubling times."



• This blog features posts about two family members diagnosed with cancer, the mother and brother of the writer. This post describes the conversation between the brother and his oncologist.
  

  After discussing Craig’s report, Dr. F. gently began asking Craig questions about his quality of life, including how he feels compared to six weeks ago; if he’s happy with the chemo results thus far; and if he feels satisfied with his quality of life. He asked these calmly, and in a way that shaded his own opinion from that of Craig’s. Craig answered every question, with each response growing labored from sheer exhaustion. He said that he felt more tired than six weeks ago, when he felt he was more on the mend. He seems most distressed about his fatigue, which has prevented him from doing the things he loves, like reading, writing, and playing music. He said he can muster energy to do short activities, but even those are difficult; talking has become another short activity. Still, he feels he’s satisfied with his life (so far) and would like to continue. If I know my brother, he won’t be the one to say stop.
  
  It broke my heart to hear him speak about his life, a life that was so vibrant and so full of promise just six months earlier. That he’s had to discuss his own treatment, and consider his own mortality less than one week after burying Mom seems particularly cruel. But there’s never a good time for such a discussion, and Dr. F. did it perfectly. He ended the discussion by saying that if C were to say that he no longer wanted to continue with the medicine, he would view it as a reasonable statement. He also added that he sees a lot of cancer patients, and that C seems to be fighting hard to be where he is. He noted that he had hoped C would be in a better position symptomatically, and though there’s still a chance he may turn the corner, Sorafenib hasn’t really helped C in terms of enhancing his energy.

Discussion of Changes to the Medicare Hospice Benefit

The Washington Post covers the changes in store for hospices who participate in Medicare. Reporter Alicia Ault pays particular interest in the move toward providing quality measures of hospice providers.

Beginning Dec. 2, hospice organizations will also have to implement a quality assessment and improvement system. Hospices will have to show the Centers for Medicare and Medicaid Services, the agency that administers Medicare, that they are trying to improve in problem areas.

Initially, quality data will be available only to each hospice organization and Medicare. Eventually, providers and advocates expect, data will be shared with the public, as the federal government has done with information on nursing homes, hospitals and home health agencies.

The June 2008 Report to Congress by MedPAC, the Medicare Payment Advisory Commission, also discussed the potential changes in detail and options for how to provide quality measures, starting on p. 227 of the report.

Hospice Professionals Help Ease the Burden of Loss

The Delta County Independent (CO) published an article about how hospice professionals help families dealing with a terminal illness. Hospice honors the patient’s values and eases the physical, emotional, and spiritual challenges as death approaches.

In 2007, 100 percent of the families served by Hospice & Palliative Care of Western Colorado said that they would refer a friend to hospice.

And Delta resident Dottie Boyd feels the same way. In fact, she wishes more people knew about the “absolutely wonderful” care that is provided to patients and families.

“When my husband Bill was admitted to hospice, the process was very smooth. Our family doctor made the referral and the hospice staff immediately became a great source of support to both of us,” says Boyd.

“They spoke to him in a way that was comforting, to make sure that his needs were met. They also allowed him to express his fears and discuss his care,” she said.

Hospice Staff Given Recognition in Tucson

The Arizona Daily Star reports on a local award, Ben's Bells, started to honor people who make the Tucson community a better place to live. Last week the employees of Casa de la Luz Hospice received the "belling" after a dying man asked his family to honor the hospice staff. The Ben's Bells project began after the death of Ben Maré Packard in 2003, who was almost three years old. The boy's family hopes the project will remind people to be kind, to help ease one another's pain.

The recognition was a huge accolade for the staff, said Dasa Schmidt, the marketing director for Casa de la Luz.

"It was such an honor and we are so grateful for the recognition and the support," she said.

About 15 people were there for the ceremony, she said, everyone from the social worker to the spiritual counselor who had helped the family with Daniel Arvayo's transition.

"They brought his picture, so it almost felt like he was present," Schmidt said.

The hospice is in its 10th year and is locally owned and operated, she said. Most of its patients remain in their homes, but the hospice also has an inpatient unit and a residential home.

In all of its services, she said, the hospice follows a model of care that treats the whole patient, and family members, too. For example, the facility has a bereavement-services program that cares for families for a year after their loved one's passing.

"We just try to make sure they can process their grief properly and with lots of love and support," Schmidt said.

She also praised the Arvayos.

"We just feel so honored to be recognized by Ben's Bells and Del and it was a privilege to take care of Mr. Arvayo and his family. They're very special, as is every single person we have the opportunity to be with."

Lessons from a Dying Patient

Last week in the Wall Street Journal's online column, The Doctor's Office, Benjamin Brewer, MD writes about lessons he learned from a dying patient. Dr. Brewer has a family practice in the rural village of Forrest, Ill. There were also follow-up questions answered in the WSJ forums.

Even though death is an inevitable part of the human condition, it's not something that most doctors, including me, ever get too comfortable with. We get used to pushing it off until another day.

When death is approaching, the natural tendency is to avoid situations that are uncomfortable, emotionally detach, visit less often, fill our time with something that seems more productive.

It's during those times when I remind myself to slow down, sit down and listen. What I have to offer when there is nothing more that medicine can do is some comfort and companionship.

Emergency Planning for Hospices and Eldercare Agencies

The recent floods in the Midwest have highlighted the need for hospices and other agencies that provide care to the elderly to have an emergency plan in place in case of a natural disaster. This post from Caregiverlist.com provides a checklist for those providing care in an elderly person's home. Pallimed conducted an interview with David Wensel, DO, hospice & palliative medicine physician for Hospice of North Iowa. Dr. Wensel discussed the challenges of providing care to their hospice patients after the flooding.

Pallimed: What are the important lessons learned from the flooding to share with other hospice agencies as they look at their own disaster planning?

Dr. Wensel: The greatest lesson learned is to plan for the worse case scenario. As a hospice think about if you lost half your staff, some of your patients had to be evacuated, and you had no safe water. You can never plan for every possible problem that might come up, but it would be very helpful to talk through different disaster plans with your staff. You never realize how wonderful it is to wash your hands, brush your teeth or take a bath until you can't. I had never thought about all the things we do to care for patents that require water.

Hospice Social Worker Addresses Ethical Questions

In this article from The Ithaca Journal, hospice social worker Jeff Collins discusses some of the ethical questions that can arise for hospices while caring for their patients. He says these ethical questions can create 'dynamic tension' for hospice staff and the patient's family, and that ". . . this is a tension we need to accept to truly meet the patient where they are."

In our day-to-day work, most ethical questions we face turn on issues of patient choice. One fairly common example can arise in home care. Most of our patients live at home and have sufficient day-to-day care from family and friends. Sometimes, though, we will have a patient who lives alone or has a frail caregiver. Staying at home might be incredibly important to that patient, but because of growing weakness, the patient's self-care capacity may diminish and the whole situation may become riskier. Sometimes, insurance pays for the kind of custodial care that the patient needs, but that is rare. The hospice staff wants the best and safest care for the patient and starts to think of a transfer to a nursing home or the hospice residence. But the patient wants to be home and often sees a fall or even death as far less of a concern than leaving home. This sort of situation can create a great deal of dynamic tension. How much risk is too much risk, and who has the right to say that the risk is too much? What leverage do we have to impel changes, especially with a rational patient? Do we need to call Adult Protective Services? We live with this tension and explore the situation among ourselves and with the patient and family. Things usually turn out OK, in no small part because of that dynamic tension.

The Role of Music Therapy

Music therapy can have a role in caring for the seriously ill and dying; it is one method that can help to ease pain and stress at the end of life.

• From Growth House's Goodbyes blog, by Deborah Bradley Ruder, she relates the role of harpist Nancy Kleiman. Kleiman shares her music across a variety of settings.

She doesn't have an assigned spot but goes where she is needed, whether to patient rooms or common areas. While riding in a crowded hospital elevator one day, a woman turned to her and said, "Do you ever play for patients? My mother is dying." "I'm right behind you," is Nancy's typical reply.

• Pallimed's new Case Conferences blog takes cases from the University of Pittsburgh Institute to Enhance Palliative Care and posts them twice a month, allowing comments and discussions. In the latest post, Andrea Scheve, MM, NMT, MT-BC, writes about the use of music and musical life reviews for a heart transplant patient.

Musical life reviews are a way for people to celebrate their lives, their love for each other, and their family traditions. Just as certain olfactory sensations can trigger memories and emotional reactions, auditory sensations (music) are linked to memories and emotions, making the life review process seamless in musical form.

MedPAC's June 2008 Report to Congress

As we noted yesterday, the Medicare Payment Advisory Commission (MedPAC), an independent Congressional agency, has released its June 2008 Report to Congress. Chapter 8 of the report is dedicated to an evaluation of Medicare's hospice benefit. The report contains considerable analysis of the who is receiving and giving hospice care, mainly from 2000 through 2005. Some highlights:

• In 2000, 27.3 percent of Medicare decedents used hospice. In 2005, that number had increased to roughly 40 percent.


• The average length of stay in hospice has increased over this period. Between 1998 and 2000, the average was 48 days; between 2000 and 2005, it was 67 days.


• The provider mix of hospices has changed since 1983, when Medicare implemented the hospice benefit. In 1983, most providers were nonprofits affiliated with religious or community organization. Today, for-profit hospices are the majority.


• A small but growing number of hospice are exceeding the "hospice cap," the aggregate per patient limit on Medicare payments for hospice services. [Payments are made on a per diem basis across four general types of care.]


• In 2002, 2.6 percent of hospices exceeded the cap. In 2005, 7.8 percent exceeded it.


• Spending on the Medicare hospice benefit has increased due to greater numbers of beneficiaries, as well as longer hospice stays. The longer stays are consistent with the growth of noncancer diagnoses (such as Alzheimer's disease and dementia.)


• The report concludes a combination of provider characteristics (for-profit vs nonprofit), patient diagnoses, and market conditions were correlated to the likelihood that hospice would exceed the cap. The number of hospices exceeding the cap is still small, just under 8 percent of hospice providers in 2005. In addition, hospices exceeding the cap were more likely to be for-profit, freestanding facilities with smaller patient loads.


• Other market forces involved in longer lengths of stay may include: whether a hospice is a new entrant into the market, the number of Medicare beneficiaries per hospice provider, patients wanting the benefit for longer periods, and the financial incentives of the current payment system.


• Growth in hospice use was higher among women than men, higher among whites and blacks than those of Hispanics and Asian heritage. Use by Native Americans doubled between 2000 and 2005. Use also grew the fastest for the oldest patients, those 85 and older.

Items we noted:

• The report details the financial incentives for hospices to provider longer stays, but also states a lack of data does not allow them to "determine conclusively whether the payment system encourages or discourages the admission of certain patients to hospice on the basis of their profitability."


• It highlighted that CMS does not currently require hospices to report quality of care, but that the new Conditions of Participation will need to provide quality assessment. The report points out the challenges of implementing quality assessment and discusses options.


• The report makes this statement, "The hospice payment system should be changed to minimize incentives that make some patients more profitable than others, so that access is equal for all Medicare beneficiaries who wish to use the benefit." The report does not provide suggestions for an alternate payment system, however.

Chemotherapy Guidance at the End-of-Life

Researchers from the Virginia Commonwealth University Massey Cancer Center examined the use of chemotherapy given to cancer patients in the U.S. at the end of life. In a news release about the research, which appears in the Journal of the American Medical Association (JAMA), the authors conclude chemotherapy may not be the best solution and suggest discussing hospice care with patients. From the news release:

Taking several other factors into account, chemotherapy toward the end of life may not be the best solution for many incurable patients. These factors include:

• Chemotherapy may have negative side effects, compromising the patients’ sense of well-being


• People in hospice not receiving chemotherapy live longer


• Chemotherapy prevents patients from going into hospice


• One in three families is bankrupted by serious illness


• Patients receiving chemotherapy are likely to miss opportunities for spiritual growth, quality family time, travel, financial transitions and to pass on a “life review” for future generations.

The authors show that chemotherapy is given near the end of life in the United States more than in other countries. The contributing factors include:

• A lack of honest information about prognosis


• Hype from drug companies and national research organizations


• People not believing their doctors or having a different perspective


• Doctors and patients wanting to avoid frank discussion about the issue


• Doctors in the United States are paid to prescribe chemotherapy; they are not paid to counsel patients and help them prepare for a “good death.”

“As doctors we are taught to save lives, and much of our training and practice is geared toward that effort,” said Smith. “Patients and their families want and need more information to transition toward the best death possible. This article provides several helpful sections to identify the appropriate goals of chemotherapy, to transition to palliative or hospice care and to discuss prognoses in clear and effective manners with patients.”

The solutions Smith and Harrington present to the medical profession include:

• More honest communication from the beginning with patients


• Bring up hospice


• Ask people what they want to know, and tell them

Also see coverage of the research from USAToday and Pallimed.

Younger People Are Becoming Hospice Volunteers

Don Aucoin at The Boston Globe reports on the rise in younger people volunteering to provide hospice care. Hospice volunteers tend to be seen as older.

But that profile is changing, as young people who saw what it did for their grandparents or other relatives step up to do what they can to ease the final days of other dying patients. There are other factors, of course, including Internet-savvy outreach by the hospices (which advertise on websites like Craigslist) and community-service requirements at colleges and high schools.

Some hospices are even seeing a surge in teen volunteers. Teenagers account for 10 percent of the Hospice of the Florida Suncoast's 3,000 volunteers. At the largest hospice organization in New England, Beacon Hospice, the number of volunteers in their teens and 20s has risen nearly 80 percent in the past year.

For more information on becoming a hospice volunteer, see the HFA website.

Patients Who Recall End-of-Life Discussions with Physicians Die More Comfortably

A study of 332 cancer patients who eventually died, reported at the American Society of Clinical Oncologists in Chicago last week, showed one-third recalled discussing the end of life with their doctors. Researcher Alexi Wright, MD, medical oncology fellow at the Dana-Farber Cancer Institute in Boston, reported that those patients were:

• 1.6 times more likely to enter a hospice in time to receive its benefits -- that is, to die as comfortable a death as possible. In the study, people who entered the hospice two months or more before death reported the best quality of life in their final weeks, Wright says.


• three times more likely to complete a do-not-resuscitate order and two times more likely to fill out a living will.


• no more likely to meet criteria for depression.


• no more likely to report being depressed, worried, anxious, or terrified when directly asked.

CMS Highlights Rights of Medicare Hospice Patients in Press Release

The Centers for Medicare & Medicaid Services (CMS) highlighted how patient rights are affected by the new hospice Conditions of Participation, which have been recently released. The new rule sets out a detailed list of patient rights.

Specifically, the rule says, patients who choose hospice, or palliative care, over curative treatment are entitled to such things as participation in their treatment plan; the right to effective pain management, the right to refuse treatment and the right to choose his or her own physician.

“As more patients and their families come to understand and select hospice care, we felt it was critical to outline what rights patients have to control the care they receive in their final days,” said Kerry Weems, acting administrator of CMS.

In addition, the press release noted these other changes to the regulations.

• A requirement that patient needs be initially assessed within 48 hours of electing the hospice benefit. The rule also requires that a comprehensive assessment occur within five days of electing the hospice and that updated assessments be done at least every 15 days thereafter.


• A requirement that each patient receive a full drug profile that examines issues ranging from the effectiveness of current drug therapies to potential drug interactions to drug side effects. A treatment team will consult with a qualified individual, such as a pharmacist, to ensure that drugs meet the needs of every hospice patient.


• A provision allowing a hospice to contract with another Medicare-certified hospice for nursing, medical social services, and counseling services under extraordinary or other non-routine circumstances, including travel of a patient outside of the hospice’s service area.


• Removal of a provision requiring an inpatient facility only providing respite care to have an RN on duty 24 hours a day. The patient’s needs, acuity and plan of care will drive the nursing and staffing requirements.

Update: Change in Language Provisions in the New CMS Hospice Conditions of Participation

Here is the CMS document, “Medicare and Medicaid Programs: Hospice Conditions of Participation.” We were alerted that the document contains some changes regarding language provisions from the previous conditions of participation. Addressing these language provisions may present a challenge for some hospices servicing diverse populations. HFA’s 2009 teleconference will focus on ways of understanding the impact of cultural diversity at the end of life.

From the CMS document,on p. 52, Section 418.52 [emphasis added]:

3. Condition of Participation: Patient’s rights (Proposed §418.52)

We proposed to replace the existing CoP, Informed consent, at §418.62, with a new patient rights CoP. The proposed patient rights CoP was divided into five standards. The first standard,”(a) Notice of rights,” would have required hospices to develop a notice of rights, including information about advance directives and the hospice’s controlled drug policies. Under the proposed requirement, hospices would have been required to present the notice of rights verbally (meaning spoken) and in writing to patients and families in a language and manner that they are able to understand. This would have occurred before the hospice furnished care to a patient and family. Hospices would also have been required to document the patient’s or representative’s understanding of the notice of rights.

In standard (b), “Exercise of rights and respect for property and person,” we proposed that the patient would be able to exercise his or her rights, be respected, voice grievances, and not be subjected to discrimination or reprisal. We also proposed that hospices would investigate and report all alleged violations of patient rights, and take appropriate corrective action where necessary.

[continued]

Comment: A majority of commenters on this issue expressed concern about the proposed requirement that hospices provide a notice of the patient’s rights and responsibilities verbally, as well as in writing, in a language and manner that the patient would understand. Many of these commenters requested that hospices not be required to furnish written notices in obscure or otherwise uncommon languages. Other commenters requested that the choice of language(s) used to communicate be left to the discretion of each hospice or that the communication be done in accordance with guidance issued by the Department of Health and Human Services (HHS) related to Title VI of the Civil Rights Act of 1964, Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons. Still other commenters requested that we specifically recognize in the regulation that interpreters, family or otherwise, be permitted to facilitate communication of the notice of rights to patients and families.

Response: We recognize that this is an area of concern for hospices, as it may be challenging for hospices to communicate with patients who speak languages other than English. However, ensuring that patients are aware of their rights and how to exercise them are vital components of improving overall hospice quality and patient satisfaction. If patients are unaware of their rights or the methods and protections available for exercising those rights, then hospices cannot expect to receive valid feedback from patients on ways to improve their services. Without the valid feedback, true quality measurement and improvement cannot exist. Therefore, we believe it is in the interest of patients and hospices to ensure that all patients, regardless of their communication needs, are informed of their patient rights.

Even so, we are sensitive to the concerns of hospice providers. The HHS guidance on Title VI (August 8, 2003, 68 FR 47311) applies to those entities that receive federal financial assistance from HHS, including hospices. This guidance presents four areas for hospices to consider when developing and implementing strategies to meet the needs of limited English proficient persons. The guidance recognizes the role of professional translation services, as well as family and friends of the patient, in communicating important information to patients, including the notice of rights. Hospices are already expected to comply with the HHS guidance, and doing so will enable them to comply with the requirements of the proposed rule.

Using family and friends as translators should not be the communication plan of choice for the hospice for its patients who do not speak English, unless the patient specifically requests this approach. Hospices should make all reasonable efforts to secure a professional, objective translator for hospice-patient communications, including those involving the notice of patient rights. Furthermore, hospices should make all reasonable efforts to have written copies of the notice of rights available in the language(s) that are commonly spoken in the hospice’s service area. For those patients who speak uncommon languages in areas where professional translators for those languages are not readily available, using family and friends of the patient is an acceptable option.

[continued]

Comment: Some commenters asked that we clarify what type of documentation would be necessary to demonstrate that the hospice provided patients with a notice of rights and that the patient or representative demonstrated an understanding of the rights. A majority of commenters noted that language in the proposed rule, “demonstrated an understanding of,” was imprecise and difficult to measure.

Additional commenters suggested that language from the home health agency CoPs at 42 CFR 484.10 should be used in the hospice CoPs. Section 484.10 states that “the HHA must maintain documentation that it has complied with the requirements of this section.” This language, commenters noted, would allow hospices to determine in their own policies how the documentation would be handled. Several other commenters suggested that hospices be required to obtain the patient’s or family’s signature, confirming that they received the notice of rights.

Response: We agree that a more precise requirement will help hospices ensure that patients and families are fully informed about the notice of rights. Furthermore, we agree that more precise language will help hospices ensure that they are in compliance with our documentation requirements. Therefore, this final rule at §418.52(a)(3) states, “The hospice must obtain the patient’s or representative’s signature confirming that he or she has received a copy of the notice of rights and responsibilities.”

Later, on p.564 CMS calculates the burden of compliance for hospices of the above [emphasis added]:

Condition of participation: Patient’s rights (§418.52)

Section 418.52(a)(1) states that a hospice must provide the patient or representative with verbal and written notice of the patient’s right and responsibilities. The notification must be presented in a manner and language consistent with the patient’s ability to comprehend the information. Section 418.52(a)(2) requires a hospice to inform and distribute written information on its policies concerning advance directives. The information must include a description of applicable State laws. Section 418.52(a)(3) states that a hospice must obtain the patient’s or representative’s signature confirming that he or she has received a copy of the notice of rights.

The burden associated with the notification requirements contained in §418.52(a) is the time and effort necessary for a hospice to: develop the notification form; provide, both verbally and in writing, the patient or the patient’s representative with a notice of patient’s rights; inform and distribute information pertaining to its policies on advance directives and applicable State laws; obtain signatures from the either the patient or representative confirming receipt of a copy of the notice of rights. There are 2,872 hospices that must comply with the aforementioned requirements. We estimate that it will take each hospice 8 hours to develop the form and 5 minutes to meet the requirements in §418.52(a)(1-3). We estimate that each hospice will on average provide 303 notifications per year for a total one time burden of 22,976 hours and annual burden of 72,518 hours.

CMS also requires communication with patients and representatives regarding the safe use and disposal of controlled drugs be done in a language and manner they can understand, p. 587, Section 418.106(e) [emphasis added]:

Section 418.106(e) discusses the standard for labeling, disposing and storing of drugs and biologicals.

Specifically, §418.106(e)(2)(i) states that a hospice must have a written policy for the management and disposal of controlled drugs in the patient’s home. As required by §418.106(e)(2)(i)(A), a hospice must provide a copy of the written policy required in §418.106(e)(2)(i) to the patient, and his/her representative and family. Additionally, the hospice must discuss the hospice policy for managing the safe use and disposal of controlled drugs with the patient or representative and the family in a language and manner they can understand to ensure that these parties are educated regarding the safe use and disposal of controlled drugs, as required by §418.106(e)(2)(i)(B).

Section 418.106(e)(2)(i)(C) requires a hospice to document in a patient’s clinical record that the written policy for managing controlled drugs was provided and discussed. Section 418.106(e)(2)(ii) states that a hospice maintain current and accurate records of the receipt and disposition of all controlled drugs.
The burden associated with the requirements contained in §418.106(e)(2) is the time and effort necessary to provide a written copy of the policy on the management and disposal of controlled drugs in the patient’s home to the patient representative and family. There is also some burden associated with the hospice explaining the policy to the patient or representative and the family. In addition, there is a burden associated with documenting in the patient’s clinical record that the written policy for managing and controlled drugs was provided and discussed. We believe the burden associated with the aforementioned requirements is exempt from the PRA under 5 CFR 1320.3(b)(2), as they are part of the usual and customary business practice for hospices.

Providing Hospice Care in New Jersey

The Star-Ledger (NJ) has a piece discussing hospice care in New Jersey. Reporter Carol Ann Campbell addresses the challenges of providing hospice care in a state that treats terminal illnesses very aggressively.

Hospice workers say they often feel they are swimming against the current in New Jersey, where chronically ill patients are more likely to die in the hospital or intensive care unit than patients in any other state.

. . .

Donald L. Pendley [president of the New Jersey Hospice and Palliative Care Organization] said the average hospice patient in the United States spends 25 days in hospice. In New Jersey, the figure is 17. The Dartmouth Atlas of Health Care, a national database, found that chronically ill Medicare patients in New Jersey spend 30 percent less on hospice in the last six months of life than the national average.

The article describes the care received by patients at a new residence hospice, but does point out that most hospice care is received at home.

New Pediatric Palliative Care Team in Omaha

An article from the Omaha World-Herald describes the new pediatric palliative care team at the Children's Hospital in Omaha. The team consists of five members, known as the Hand in Hand program, and includes a physician, social worker, chaplain, nurse, and a child life specialist.

The program began as a test project in October 2006 and became a unit of Children's Hospital last fall. The team has worked with 47 families, 13 of which have since lost their child.

Hand in Hand provides "pediatric palliative care" -- team members listen to, comfort and assist families that face life-and-death decisions for their children. Team members help families make plans and goals for those kids.

What a Hospice Volunteers Can Do For Patients

Here's a nice article about the role one hospice volunteer has played in the lives of the terminally ill, from The Post-Crescent (WI).

Read more about what volunteers contribute to hospice care.

Nurses Surveyed for Their Impressions of Hospice Volunteers

The Hospice and Nursing Homes blog pointed us to a study that appeared in the April 10 American Journal of Hospice and Palliative Care regarding the views of nurses towards hospice volunteers. Although the survey set was small, 50 nurses involved in hospice and home care, the nurses were asked about their knowledge and perception of hospice volunteers, appropriate tasks for volunteers, and the value of volunteers.

Fifty-three percent of the nurses felt that volunteers should know patient medical information, and 77% thought that volunteers should have the opportunity to provide input regarding patient care. Also, 75% of the nurses felt that volunteers made their jobs easier, and 56% felt that volunteers should be included in team meetings. When asked to list the topics covered in a hospice palliative care volunteer training program, 73% of the nurses indicated that they were not sure or did not know what topics were covered, indicating a lack of knowledge regarding volunteer training.

Memorial Day Follow-Up: Hospice Benefits for Veterans

This article from the Home Town Journal (FL) describes the hospice care benefits veterans can receive under the Veterans’ Health Care Eligibility Reform Act of 1996 and the types of services Florida hospice provide veterans and their families.

CBS Evening News Offers Misleading Coverage of Medicare Hospice Benefit

The CBS Evening News aired a story this week on a hospice owner who owes the Centers for Medicare & Medicaid (CMS) $3 million (view video below) for services she provided to terminally ill patients. HFA does not know the details of this particular case, and cannot address the specific billing issues raised by the brief story. However, we would like to correct the inaccurate portrayal of how hospice payment by CMS works. The report stated:

But there's a problem: 11 years ago, Congress mandated that terminally-ill patients are entitled to unlimited hospice care - but Medicare only pays the hospices for six months' worth, CBS News correspondent Thalia Assuras reports.

In fact, hospice care is a covered benefit under Medicare for patients with a prognosis of six months or less. A patient can remain in hospice care beyond six months if a physician re-certifies that the patient is terminally ill every 60 days thereafter.

The payment issue is more complicated than the report implies. Hospices are paid a daily rate by CMS for each day the patient receives care, according to a fee schedule for four broad categories of care. In addition, there is the cap amount set by CMS (the cap for 2008 is $22,386.15). However, this cap is not applied to each individual hospice patient, but rather aggregated across the entire patient population. So a hospice that serves 100 patients a year, could have a total cap of $2,238,615.

Since the majority of patients served by hospice are referred less than six months before their death, a hospice can provide care to those patients who live longer than six months and still receive payment for their services from CMS. In recent years, some hospices have exceeded their caps and there are groups lobbying to change the way hospices are reimbursed. HFA is not an advocacy organization, and has not taken a position on the payment issue or those efforts, but we would like to provide our readers with accurate information on how CMS hospice payments work currently.

Report on UK Pilot Program to Improve End of Life Care

This report on a 2006 pilot program launched in the UK examines the lessons learned from an attempt to extend a project (the King's Fund Enhancing the Healing Environment [EHE]) to six additional hospitals and two Marie Curie Cancer Care hospices in England and Scotland, in an attempt to "improve the environment of care for those who are dying, bereaved, or deceased." The pilot program has been extended to 20 further facilities in England. The original King's Fund program had previously worked with 119 National Health Service trusts (which provide both primary and acute medical services in England), 2 hospices and 5 prisons. The report's authors include the program director and the funding and development director for the King's Fund EHE, as well as two outside consultants. From the report:

The programme encourages and enables local teams to work in partnership with service users to improve the environment in which they deliver care. The programme consists of two elements: a development programme for a nurse-led, multidisciplinary team and a grant for the team to undertake a project to improve their patient environment. Throughout our work on the environment of care, one theme has remained constant– the need for health care settings that make patients feel cared for and staff feel valued.

. . .

As a result of our practical experience we recommend that all the settings with which end-of-life care occurs provide:

• a room where patient and family can be taken for confidential discussions.


• the option of single room accommodation designed to engender a feeling of homeliness where patients retain control over their environment


• informal gathering spaces and places where families can meet, confer andtalk with care staff


• guest rooms where close family or friends can stay overnight with facilities for catering and internet access


• appropriate places for 'viewing' the deceased.

Our practical experience also leads us to recommend that all health service providers include care of the dying, bereaved and deceased in corporate induction programmes for all staff and that professional training for all staff groups should include material on the impact of the environment in end-of-life care.

As a result of our consultative conference, considering the issues raised by the work, we recommend the Department of Health should develop national standards for the environment for end-of-life care, significantly increase investment in these environments and ensure that policy and practice development enables everybody to make choices about where they would prefer to die and to revisit that choice as their condition changes.

Discussing the Future of Hospice Care

A MedPage Today column by David B. Nash, M.D., M.B.A., F.A.C.P.; JoAnne Reifsnyder, Ph.D., A.P.R.N. (DISCLOSURE: Dr. Reifsnyder has been a panelist and expert for HFA) discusses recent developments in end-of-life care and what these changes could mean for hospice providers. The authors talk about the roles palliative and hospice care play for patients, and trends on the horizon.

Increasing access to palliative care in the home or other residential settings. Many hospice experts argue that removing the typical eligibility requirement of a six-month prognosis would meet many more patients' needs for palliative care and create access for patients with chronic illnesses.

Because payment for hospice is largely government-funded through Medicare and state Medicaid programs, however, myriad economic and public relations questions must be addressed.

Hospice Rule Changes. Two issues are driving increased CMS scrutiny of the hospice industry: First, the dramatic growth in CMS payments to hospice and second, suspected fraud and abuse in the hospice industry.

Most significant among the imminent changes to the Medicare hospice benefit are a new emphasis on quality assessment and performance improvement, a first step toward what experts agree will be a public reporting initiative and, eventually, a pay-for-performance design for hospice reimbursement, and a new emphasis on leadership at the board level.

Compression of Reimbursement. Noting the hospice industry's exponential rate of growth, CMS has signaled that reimbursement reforms including across-the-board per diem rate cuts and greater scrutiny of claims are on the horizon. And it's unlikely that there will be any help for those hospices that exceed the annual, aggregate per-beneficiary cap on reimbursement -- an increasing problem with growing enrollment of longer-stay patients.

General Inpatient Care and Hospice-managed Inpatient Units. Many hospices now own and operate small, freestanding or co-located facilities where they provide residential and acute-level care to hospice patients. As development of these units has accelerated, utilization of the general inpatient (GIP) level of the Medicare hospice benefit has increased.

CMS is tracking this trend, and has noted a growth in hospice-related expenditures for GIP between 2001 and 2005. Hospices should expect to see greater regulatory scrutiny of utilization.

Hospice in Nursing Homes. Hospices routinely bring the hospice model and service package to residents of nursing homes, providing support to the residents' families and nursing home staff in addition to the resident himself.

Living a Good Life

Vince Chiles

Much of what I need to know about living a good life I learned from hospice patients and their families. People who are at the end of life, and their caregivers, tend to be a vital collection of characters. They seem to appreciate those things the rest of us take for granted. They are able to accomplish superhuman care with a level of sophistication and compassion under incredible circumstances. What they have taught me has enhanced my quality of life a hundred fold.

Each day is a new day. This is a fact of existence proven over and over again at 24-hour intervals, but when faced with a predictable and limited future, the terminal patient often faces the end of life with courage, tenacity, and grace. The reality is that we each live life one day at a time, and that we may all only have this day left. In our busy lives we often forget or ignore the fragile nature of our being. This oversight robs us of the blessing that comes from appreciating this impermanence. Hospice patients and their families have helped me acknowledge the gift of recognizing the potential in each new day. I try to start each day with a ritual of welcoming the new possibilities and opportunities I may face. This has helped me to be more present to the people and tasks that are important in my life.

There’s no time better than now to say “I love you.” In our hectic lives, now often do we say “in a minute” to someone we love? I recently received a poem written by a terminally ill child who spoke to this postponement. Now is the time to say “I love you,” to spend time with those you love, and to be present and attentive in their lives. This is an incredible challenge when personal goals, work, and relaxation seem to be more demanding or beneficial endeavors. The reality is that in the last moments of life, the most precious memories are the tender moments or milestones spent with families and friends. Nothing is more important than saying “I love you” right now.

We can do anything we put our mind to. I have witnessed adult children bathing their parents, spouses married 50 years plus provide around-the-clock care. I have heard five-year-old grandchildren utter words of wisdom that transcend the ages. I have seen friends and neighbors rally to take shifts and provide care when there was no family for the dying. I have observed hired caregivers and volunteers who have sacrificed their own needs to be present so a loved one can have an extra hour of rest. When faced with adversity, we humans rise to the occasion with incredible strength and fortitude. Whether it’s for God or our country or those we love, we can do anything we put our minds to. This ability to muster strength and fortitude in times of adversity is remarkable. We all possess this ability. When caring for a sick loved one, we often take this quality for granted. In is innate, and we can harness it any time we choose. Why wait for periods of crisis? That we can do anything we put our minds to this instant is another powerful lesson I’ve learned from my work in hospice.

These three lessons when applied each day have enhanced my overall quality of life. I and the people around me are happier and more successful as a result. Each day is a new day, say I love you now, and we can do anything we put our minds to, do not have to be lessons learned only at the end of life. They can be practiced before a terminal diagnosis to enrich living right now, and the lives of those we love. I think the hospice patients and families I have worked with recognize the gifts they give. I believe they hope that they will be used so they live on in the deeds I do. I know that they do live on.

Vince Chiles, MSW

A Gentle Death: Five Months with Hospice

Following the death of her husband, John H. Ross, in December 2002, Barbara O’Neil Ross began writing about their experience. John spent over five months in the care of Hospice of Cambridge in MA. Both John and Barbara were strong believers in the benefits of hospice care, becoming familiar with hospice through reading and the work and efforts of good friends.

After the death of Barbara’s mother in 1983, which Barbara felt was prolonged unnecessarily causing her mother additional suffering, her support for hospice intensified. She and her husband both knew that they wanted to give John “a gentle death.” Barbara’s nine-part series, A Gentle Death: Five Months with Hospice, captures the essence of hospice care and the various roles the hospice team can play in the lives of the dying and their loved ones.

“You know, this is the beginning of the end,” John’s lung specialist tells me over the phone when I ask if he will authorize hospice care. He agrees to sign the required papers predicting a life expectancy of less than six months – but seems reluctant. Awake most of the night, I agonize over the decision. Next morning I phone the primary care physician, an old friend of my husband. His response to hospice: “I’m so relieved to hear this. I was afraid you didn’t realize how serious his condition is.”

A few days later a starchy Scottish woman arrives with a mountain of forms. She pulls her chair up to John’s bed, her kind eyes looking directly into his, and says, “You know, love, your lung disease isn’t going to improve.” Her warmth and honesty put us at ease. Read the complete series here.

Changes to Medicare Hospice Wage Index Proposed

On Monday, CMS (Centers for Medicare and Medicaid Services) announced proposed changes to the hospice wage index for FY 2009. The proposed rule would phase out the annual adjustment to the wage index over a period of three years. In effect, this may reduce the payments some hospices receive from Medicare depending on where the hospice provides services, according to CMS [CMS-1548-P, p.22]. The hospice wage index was initially developed to reflect differences in area wage levels around the country. HFA does not provide policy analysis, but HFA is studying the analyses that have been provided by other organizations.

• The Medicare Update blog wrote about the new proposed rule. See the display copy here (PDF) or view the Fact Sheet here.
• The National Hospice and Palliative Care Organization (NHPCO) issued a press release detailing its opposition to the proposed rule. The release highlighted the strains hospices are under financially as the cost of gas, supplies, and pharmaceuticals increases. They also point out a recent Duke study which indicates hospice care results in lower Medicare expenditures.

"Patient satisfaction data collected by NHPCO shows the 98.5 percent of families would recommend hospice to others, reflecting the high level of family satisfaction with care. Coupled with the fact that hospice can be cost effective to Medicare, it seems illogical to put rules in place that would cut down on the care hospice providers could offer," Schumacher noted.

The result of this proposed rule would potentially mean less care to patients and family caregivers during the end of life.

"NHPCO and its affiliate, The Alliance for Care at the End of Life, recently supported bipartisan, bicameral letters from 87 Members of Congress sent to Secretary Leavitt in opposition to the proposed rule and subsequent rate cuts to hospice care. The rule release merely marks the beginning of an arduous regulatory process -- one that we will engage in to the very end to ensure that this valuable benefit to the dying is not sacrificed to short-sighted cost cutting whims," concluded Schumacher.

• The Hospice Blog covers how this proposal could affect rates.

The Hospice and Caregiving Blog will continue to post information about changes in CMS policy towards hospice reimbursement.

Celebrating Death, Hospice Visits, and Alzheimer's

This post is a round-up of a few items of interest that address caregiving, death, and hospice from a personal perspective.

• TIME Magazine had an essay from Nancy Gibbs about celebrating the day of her father's death. The metaphor her husband used to explain his death to their daughter is wonderful.

  How is it that the one event we know with absolute certainty will occur is still one we improvise? Do we lower our voices, dress in black, save a lock of hair as the Victorians did and wove into jewelry? Do you let young children see a corpse--the very word suddenly cold and empty because his flesh and blood no longer matter, his meaning filling the space once his presence is gone? "Is that Grandpa?" our 4-year-old wondered. "No, honey," my husband told her. "He's not here anymore. That's just his body." She worked at this, how the arms that held her and the lap she sat in were no longer him. "You know how when we go to Florida, we leave our winter coats at home because we won't need them there? Well, he just left this behind because he doesn't need it anymore." And this appeared to make perfect sense to her, and she went to play, full of love and certainty, and we all took a walk in the watery light of late afternoon.

• A medical student at the University of Glasgow blogs about her visit to a hospice as part of her medical training.

  I spent Wednesday morning at a hospice on the south side of the Clyde.
  
  It may not be how most people would react, but afterwards, standing outside, I turned to my VS tutor and said, “This is going to sound weird, but it seemed like a really happy place.”

• The News-Times (Connecticut) carried a story about the strong love that remains in a 68-year marriage of a couple where the husband has Alzheimer's disease.

Saying Thank You to All the Volunteers

Next week is National Volunteers Week and HFA wanted to say thank for the dedication hospice volunteers show each and every day. Without its volunteers, many hospices could not provide the high level of care they do for terminally ill patients and their families. Hospice volunteers perform a wide variety of vital services, including support for patient, respite care, bereavement support and more. To learn more about what hospice volunteers are doing in your community, or about how to become a hospice volunteer, please visit our website.

Recently, one of our readers, Laura Edge, was so moved by her experience of training to become a hospice volunteer, she sent us an essay about how it has changed her perceptions of hospice care. We thank Laura for sharing her thoughts with us, and we thank all the volunteers who contribute their time, talents, and energy to assist the dying and their families.

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I am a new volunteer with a hospice in West Texas. I wanted to express how much I have been affected by my training and how "off" I was in many of my assumptions of what hospice care meant. Being in the funeral and cemetery industry for almost 14 years, I have only ever heard positive things about hospice. I did not know, however, how much more hospice provides. I have always been taught about grief from the survivors’ point of view. I have come to the realization of what pre-arrangements and planning ahead truly means. It took a class on “Finishing Well” to help me see how to live well, to live with purpose.

When I began trying to decide if I wanted to work with the Children’s Grief Center or with hospice, I took a weekend course for the Children’s Grief Center, and then “Ending Well,” an eight-week class required of hospice volunteers prior to working with a patient and family. I wanted to take the classes because I thought it would help me as a funeral professional. In truth, since I had all this “experience” I was simply going to sit through the “required training” in order to sit with families occasionally, and help with teens who were having difficulty adjusting to a loss. I did not realize any of this was going to affect me on such a personal level. I am only in the third week of this training, and have yet to volunteer, but, already, I have been touched in ways I could never have predicted.

Most of the people who are volunteering with hospice are there because hospice had been there for them at a time of need, or because they are caregivers of persons who were currently in hospice. The depth and the truth these families are sharing was, and is, beyond words. I cannot express how exposed and vulnerable these caregivers are as they weekly search for answers. I often felt as if I was glimpsing at parts of their souls as I heard their stories.

As I sat in the class, I began to question quite a bit of what I had been taught, both on the job and in the classroom. One woman explained that her husband had been dead for over 25 years, and that most people have come to avoid the topic of him. It was hurtful to her, 25 years later, still a fresh wound. But she expressed that when someone did speak about him, it gave her joy because he was being remembered. She said this was more of a tribute to him than anything else. There are many, many more opportunities to memorialize someone.

Since I have been in the funeral and cemetery industry for so long, my family tends to think that I am whom they need to talk to about their final wishes. Not one family event, be it a holiday or a birthday or a funeral, goes by without someone pulling me aside to tell me what scriptures they want read at their funeral, the color and kind of flowers they want on their casket, or that they have changed their song choice (AGAIN), or “PLEASE, don’t let them put orange lipstick on me.” I have always listened and planned on making sure their wishes are followed through, but I am beginning to realize the extent, the importance of helping them finish well. Whether simply spoken in confidence or placed in writing or arranged beforehand, they provide true moments of sharing and that will undoubtedly be important to the ones they left behind.

Laura Edge

Use of Antibiotics at the End-of-Life in Dementia Patients

The Chetek Alert (Wisconsin) published a letter about the difficulty navigating decisions to medicate near the end-of-life. HFA’s medical consultant William M. Lamers, Jr., M.D. recently weighed in on a study about antibiotic use in dementia patients. It is one thing for medical professionals to debate the ethics in journal articles, it is another to read a very personal account of the decision-making process a family must go through in regard to giving medications. The letter from John M. Hardin, involving the care of his wife who had dementia, is such an account. We are sharing it here in the interest of opening up the dialogue about the use of medications at the end-of-life.

Although patients with terminal illnesses (or their families) are more routinely asked if they have a DNR (Do Not Resuscitate) order, questions involving other types of medications are not usually part of the process. Hardin argues:

I would like to propose a new approach to nursing home admittances, especially when there are no living wills or power of attorney for health care. In addition to asking if the loved one is DNR, they should also be asked if they are DNM (do not medicate with new drugs) or PCO (Palliative Care Only). Then, and only then, will we return to the normal course of things that existed before 1943. Then and only then will we finally address the issues surrounding dementia with a more realistic, kinder approach.

UPDATE 4/28/08: A director of a nursing home responded to the letter with the following:

I read with interest the article on end-of-life decisions by John Hardin and I am in total agreement that these decisions are very difficult for all involved, but are necessary.

Knapp Haven's admission procedures do include reviewing with the resident or the responsible party measures that they want put in place so everyone respects their decisions and quality of life wishes. This is not a new approach, as it has been our policy for more than 17 years. The options presented include not only do-not-resuscitate measures, but also palliative care measures only, including the choice of medication therapy.

Mary Huset
Director of Nursing
Knapp Haven Nursing Home

Gaps in the Availability of Hospice Services, According to National Study

A University of Michigan study released Friday points to gaps in the availability of hospice care across the United States, particularly in communities with lower average incomes and education levels, and more elderly people. Researchers believe the disparity is a result of how hospice care is covered by Medicare and private health insurance. In many cases, the reimbursement rates are lower than hospices actual costs of providing care. Therefore, hospices must look for charity donations and must also use volunteers. The researchers surmise that hospices are more likely to receive this type of financial and volunteer support in higher income areas.

Huge Variations in Cost of End-of-Life Care Across the United States

The Dartmouth Institute for Health Policy & Clinical Practice published its annual Atlas of Health Care. The entire report and executive summary is available for download from their website. The 2008 edition examines how care for Medicare beneficiaries with serious chronic illnesses varies across U.S. states, regions, and hospitals, in the patient's last two years of life. It includes data through 2005 as well as all sectors of care covered by Medicare: inpatient hospital care, outpatient services, nursing, home health care and hospice services.

The Dartmouth study found wide variations in the the amount and cost of care that Medicare patients receive in their last two years. While the national average was $46,412, the cost of care among the top five ranked teaching hospitals (by U.S. News & World Report) ranged from a high of $93,842 at U.C.L.A.'s Medical Center to $53,432 at the Mayo Clinic's St. Mary's Hospital in Rochester. The executive summary explains that these variations in spending are mostly due to the differences in "supply-sensitive care." Put simply, in areas where there are more hospital beds and more physicians available per capita, there will be higher admission rates and more physician visits. Nearly 55% of total spending takes place in acute care hospital settings. The authors report that over the past decade, more and more research shows that higher spending and higher use care does not equate to better care.

The study also addressed the belief that expanding access to non-acute care sectors (skilled nursing or rehabilitation facilities, home health services, or hospices) would save money. They found this not to be the case except for a small decrease in overall for those using hospice care. (A study by Duke University in November 2007 found Medicare savings for hospice vs. non-hospice users, while also giving patients a greater quality of life.) The executive summary states that currently, the United States has invested in certain types of care with the "assumption that more intensive management of the chronically ill results in better health outcomes and greater patient satisfaction. That assumption is being challenged by emerging clinical strategies designed to improve care: the hospice and palliative care movements, the growing chronic disease management industry, and population-based chronic care models that emphasize continuous and coordinated management of patients over time and among sectors of care."

Other articles covering the report:
The New York Times
The Wall Street Journal (requires subscription)
WSJ's Health Blog
AP state-by-state breakdown
The Salt Lake Tribune (examines differences between hospitals within Utah)

Missing the Chance to Talk Openly with Dying Patients

In this essay appearing in the Journal of Clinical Oncology, Dr. Bruce H. Campbell discusses his anxiety and apprehension discussing the conditions his terminally ill patient might encounter at the time of death. Although his patient, suffering from thyroid cancer, asks questions about how he will die, Dr. Campbell finds it difficult to directly address his concerns and is frustrated that he does not know how to handle the situation. An accompanying commentary by Drs. Timothy J. Moynihan, Charles F. von Gunten, addresses the missed opportunity Dr. Campbell had to reassure his patient. They explain how they would have handled the interaction:

We both wanted to be standing next to Dr Campbell in this scenario,to help with some possible responses. After the patient asked how he would die, Dr Campbell gently described how patients usually die, yet there was a missed opportunity. One of us might have said, "Tell us what you are most afraid of." Most junior faculty can’t imagine asking something like this, which seems to invite more anxiety and discomfort for both the patient and the doctor. In contrast, it is usually therapeutic because no one can reassure the patient until he knows what is really frightening him.

We expect the patient might have responded, "I don’t want to suffocate to death!" Or, "I don’t want to bleed to death!" "I don’t want my family to witness this." He might also have cried.

We would model being silent in the presence of the patient's distress, which conveys the message that we won’t run away even if the going gets tough. We would reach out, silently, to touch his arm. We would both be seated. When the patient stopped crying we would then say, "Many patients feel just like you do. Fortunately, it doesn’t have to be that way. Would it help to talk about what might happen, and what we’d do so you won’t suffer? Some patients just want to be reassured that the doctor will manage things, but most are reassured by talking about their worst nightmares, and making a plan. How is it for you?"

If the patient wanted, we would discuss aggressive comfort measures, including aggressive sedation if something overwhelming happens. We would firmly tell him he won’t die feeling like he is suffocating. While we can’t control the cancer, we CAN control how he feels. We can also control the environment so his family and the nursing staff won’t be traumatized.

After the interaction, we’d join Dr Campbell in the hall with his colleagues and the nurses, and debrief the interaction in order to meet the team's personal self-care needs. We’d listen while they told us how uncomfortable they felt. We’d tell stories about similar situations when we felt helpless, and how we got to the place where we don’t feel that way anymore. We’d rehearse what to do in the case of worst scenarios, supervise the writing of the orders, and make sure the nurses knew what to do and whom to call . . .

Improvement in Care of Children with Cancer

A retrospective study of 119 patients who died from cancer between 1997 and 2004 was compared to 102 cancer patients who died between 1990 and 1997. The goal of the study was to determine whether increased palliative care could affect patients’ quality of life and care. Appearing in the Journal of Clinical Oncology, the study concluded that these children ". . . are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely."

In a press release, lead author Joanne Wolfe, MD, MPH, director of Pediatric Palliative Care at Dana-Farber and Children's Hospital, discussed the findings.

Wolfe and her colleagues identified notable changes in the patterns of care. Medical record reviews indicated a 40.7 percent increase in documented discussions about home or hospice care in the follow-up study (76 percent of medical records included a note that palliative care options were discussed with the family, up from 54 percent). There also was a 16.4 percent increase in do-not-resuscitate orders (78 percent, up from 67 percent). The proportion of children who died at home remained similar between the two studies, but, in the second study, there was a 42.1 percent decrease in the proportion of the children who died in the intensive care unit (22 percent, down from 38 percent).

Although the follow-up study indicated that children were proportionately as likely to experience fatigue, pain, shortness of breath, or anxiety, they suffered less from the symptoms, with the exception of fatigue.

Wolfe said that one of the most meaningful findings to her was the shift in where children are dying. "Fewer children are dying in the intensive care unit, and that is likely because other options are open to families," explained Wolfe. "This might be because there are more opportunities to have conversations around this intensely sad outcome, but at least it is making a bit of a difference in the context of losing a child to an illness. Dying in the ICU might be the right location for some children and families, but at least they are aware that they have options."

Pitting Hospice Against Palliative Care Misleading

This Letter to the Editor from HFA appeared online today at denverpost.com.

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Re: “I call them guardian angels,” March 25 Denver and The West story.

This article addresses the vital importance of patients and families having options in the care they want when facing a terminal illness. Unfortunately, the article has chosen to pit palliative care against hospice care. Dr. Johnson states that palliative care succeeds by “putting patient and family right in the center … . It’s about providing good medical care — as defined by that patient and family.”

Hospice care has provided just this kind of care for over 25 years. In addition to excellent medical care, hospice is the only system of care in which emotional and spiritual support for the patient and family, both during the dying process and after the death, is covered by Medicare.

By saying that people in hospice must “give up the right” to pursue life-prolonging treatment, the article perpetuates the common myth that hospice is about giving up or giving in. Yet the Millers, who were highlighted as an example of the strengths of palliative care, explicitly stated that after reviewing their options, they “decided on no further medicine, no chemo.” To paint one as “giving up” while heralding the other as a family- and patient-driven decision is, at best, misleading. Over 1 million people actively choose hospice care each year over futile treatments in order to receive the best pain control and quality of life.

The article also touted the economic efficiency of palliative care. Yet a recent report by Duke showed that not only does hospice deliver high quality care to the dying, it does so in a way that is economically sound. Citing other researchers who have demonstrated that hospice improves the quality of life for patients and family members, the authors conclude that “the Medicare program appears to have a rare situation whereby something that improves quality of life also appears to reduce costs.” Hospice has been shown to save money since the first study was done in 1986.

Ultimately, when faced with end-of-life decisions, families deserve the best care possible, whether or not it increases the economic and managerial efficiency of a hospital system. Hospice care has set the standard for quality end-of-life care for more than 25 years, and allows people to die in a home environment rather than a hospital if they choose. For more about the facts of hospice care, please go to www.hospicefoundation.org

David Abrams, President, Hospice Foundation of America, Washington, D.C.

Examining Hope in Patients with ALS

A study from April's Journal of Palliative Medicine, released online this week, investigates the concept of hope in patients with amyotrophic lateral sclerosis (ALS). Through interviews with 16 patients, the researchers defined eight categories of hope: hope for a cure, social support, search for information, spiritual beliefs, concern for others, adapting to changing capacities, living in the moment, and self-transcendence. The authors of the study suggest that the palliative care team has an opportunity to assist in the "process of acceptance of illness and death" for these patients.

Perinatal Hospice Programs

An MSNBC story from Monday focuses on perinatal hospice programs. The story also shares a website, www.perinatalhospice.org, that tracks the growth of perinatal hospice programs in the United States. The site is run by Amy Kuebelbeck, whose son was diagnosed prenatally with a deadly heart defect in 1999. In a previous post, we shared an article that appeared in the New York Times last year, which explains the role of perinatal hospice and followed two families experiences.

Role of Palliative Care Pharmacists in Patient Care

From the American Society of Health-System Pharmacists, a description of the changing roles of a palliative care pharmacist. While providing psychosocial care is traditionally seen as the role of a social worker on a palliative care team, some programs are training pharmacists to play a greater part.

Internist Opines on Why Hospice Matters

There are quite a few 'anonymous' medical blogs out there, doctors and nurses who want their voices heard, but not on the record. I avoid posting from them, because there are plenty of medical professionals willing to attach their names to blogs. But this anonymous post from the WhiteCoat Underground blog, by an internist, captured my attention. Hospice professionals would undoubtedly agree with this description, but there are many people (medical professionals included) who still don't really "get" hospice care. This internist does:

Hospice care is aggressive, but not in the same way as standard medical care. The starting assumption is that a disease is incurable and the patient is going to die. Since the disease is ultimately going to win, the only battle left is the symptoms. Pain, breathing difficulties, loneliness, grief are all treated aggressively by a multidisciplinary team that usually includes doctors, nurses, clergy, and others.

The hospice team cares not just for the patient, but the family as well. Hospice treats not just the pain of the disease, but the pain of loss as well. Hospice care is indeed aggressive care, when it is most needed.

Krista Renenger

Hospice Offers Music Thanatology to Patients

This Chicago Tribune article discusses the clinical benefits of music therapy for both the living and the dying. It details one hospice programs which uses a music-thanatologist to comfort dying patients.

The Midwest Palliative & Hospice CareCenter, based in Glenview, offers a different kind of music therapy for terminally ill patients. Therapist Pat Harthun, who sings and plays guitar, said, "The music helps patients express their feelings in a way that is much less threatening than talk therapy, and it can also help with physical aspects such as reducing their pain, lowering their heart rate and blood pressure, and helping them to breathe more easily and relax."

Peace in the final hours

When a patient has only a day or two left to live, a music-thanatologist (from the Greek word for death) who plays a harp and sings or hums melodies can ease the final hours.

"It's not a concert, and we're not playing Bach," explained music-thanatologist Margaret Pasquesi. "We weave together musical elements in response to a patient's moment-to-moment changes with the purpose of alleviating physical, emotional and spiritual suffering, so the music is very individualized as the patient's respiration rate or agitation changes."

Practicing Acceptance for the Hospice Professional

Vince Chiles

Learning to accept the inevitable is something hospice professionals often discuss with those in their care. They need to help their patients and families come to terms with what it means to have, or care for someone with, a terminal illness. Acceptance is not just something that helps hospice patients cope and have a better quality of life, it is something that helps us all cope better. When we struggle in life it is often because we are not accepting something that is interrupting our status quo. Learning to practice acceptance is something the hospice professional can do to help him cope better with the demands of this work.

Hospice professionals get recharged by helping their patients and families make peace with their illnesses and find a better quality of life in the time they have left. We are passionate about caregiving, and feel blessed by each patient contact we have. However, the nature of the work behind that contact is demanding; from obtaining physician orders, to paperwork, to assuring regulations are met. These demands can exhaust the professional and create a sense of disharmony and frustration. “How can we do all that needs to be done,” we lament. If giving care charges us up, doing the work drains us.

Accepting the work behind hospice care is a key to best care practices. Denying all the responsibilities of the job can create frustration, and it is a form of denial. When we accept all of the work as a means to providing the very best patient care, we learn to manage ourselves better. As a result, we can keep our battery packs charged, and we can keep going, and going. . . Acceptance is much more then a care strategy in hospice; it is a way of life.

Here is my simple four-step guide to practicing acceptance. First, take a few moments to stop yourself before you allow the frustration to build. Second, check-in with yourself by acknowledging what is frustrating you. Third, learn to follow your gut, by asking yourself ‘What can I do to make this situation better?’ Pay attention to your intuitive answer and apply it to the situation. If you can’t come up with an answer, ask for help. You can call your supervisor, another team member, or appeal to a higher authority. Fourth, take a few deep breaths to re-focus and re-direct your attention to what has to be done next and move on.

The third step also requires a willingness to ask for help when you cannot find a solution on your own. Your supervisor wants you to provide the best care, and asking for help assures this. Hospice administrators strive to provide leadership that fosters emotional well-being in the workforce. They often use a variety of resources to promote a healthy team.

Some examples of resources hospices use to promote employee well-being include; open door policies regarding staff concerns, providing supportive services to lessen work responsibilities, and employee assistance programs. Many hospices extend the services of their spiritual and bereavement departments to staff struggling with the emotional rigors of the work. Hospice programs may provide onsite trainings, or send staff to professional seminars for personal development, growth, and renewal. Many programs hold regular staff appreciation events, from pizza parties to recognition receptions, to validate the dedication and hard work of their employees and volunteers. Hospice administrators recognize the value of a healthy inter-disciplinary team, and strive to develop new and improved programs that encourage hospice staff and volunteers to feel comfortable to seek out help when they need it.

Hospice leadership recognizes the value of effective team work. Effective team work means that no one person will have all the answers all the time. It means the members of the team will need to rely on one another to get the job done. Hospice administrators know that acceptance of our limitations as team members is a valuable resource in assuring best practices. The best hospice teams require members who can acknowledge the value acceptance plays in promoting quality care.

Remember to practice acceptance yourself every time you feel you are reaching your knowledge limit. Apply these four steps; stop yourself, check-in, follow your gut or ask for help, and move on. As you become used to using these tools you will find you have a greater level of acceptance in your work, and as a result you will be providing better care.

Vince Chiles, MSW

AGIS’ New End-of-Life care Section Features Hospice Foundation of America as New Expert Resource

Caring for a loved one who is terminally ill can be the most emotionally challenging time in life, and AGIS Network (www.agis.com) seeks to aid caregivers and loved ones with all the emotional support and informational resources available. We have just added to our site a new end-of-life care section featuring the Hospice Foundation of America as our expert resource.

Hospice care provides families with ailing or dying loved ones with a team of professional help to bring physical, emotional and spiritual comfort to everyone involved. Although the focus shifts from curing the illness to providing comfort and care, a great deal can be done to support the caregiver and their loved one during this challenging time. The End-of-Life section adds yet another crucial resource to the comprehensive information available on the AGIS website.Caregivers, family, friends and loved ones can find help for all aspects of caregiving, from legal and financial planning to specialized care for specific conditions such as Alzheimer’s Disease. The Carestation blog and AGIS online community offer interactive forums for people to share their individual experiences for mutual understanding, learning and comfort.

Hospice care is founded on the philosophy that each and every one of us deserves to die with dignity and comfort. Through mutual understanding and respect, families and loved ones can utilize the appropriate end-of-life care options for their family’s specific needs.

Our hospice overview can be found here.

For emotional support and strategies to help deal with the loss of a loved one, our grief and loss information section provides the best available tools for families in their time of need, see here.

Racial Differences in the Decision to Revoke Hospice Care

Pallimed's Drew Rosielle, MD, writes about a recent article from the Archives of Internal Medicine, which examined data from 167,000 patients being served by a multi-state hospice group over a five year period. The patients included in the study left hospice care while still alive, a small percentage of whom went on to pursue aggressive treatment. The interesting note, is that African-Americans had 70% higher odds of making the decision to pursue aggressive care than whites.

Using Photography as a Palliative Care Tool

Social worker Marilyn Peck has been honored for her program, "Life Through Pictures," which uses photography as a palliative tool end-of-life care.

"The concept. . . uses the power of visual imagery to stimulate patients to do mental 'life reviews.' In these reviews patients talk about their memories and in so doing find clarity and peace in the final chapters of their lives.

'When an individual comes to the end of their life, a lot of times there are a lot of pieces that need to be pulled together,' Peck said. 'My goal is that if they see what they have done, their regrets will diminish, their peacefulness will grow.'"

Pennsylvania's Efforts to Increase Hospice and Palliative Care for Children

A follow-up to an item we posted Jan. 14, The Philadelphia Inquirer reports on a Pennsylvania task force that is examining ways to eliminate barriers to children receiving hospice and palliative care. From the article:

"Some of the goals the task force is considering would require legislation or the redrafting of state regulations.

For instance, federal regulations now permit reimbursement for hospice care only if a child is given six months or less to live, and if the family forgoes any further intervention. Many private insurers follow the federal model.

And that, hospice advocates say, puts families in the position of making the choice between hospice and painful, and possibly fruitless, hospital treatments.

Some states, such as Colorado and Florida, allow children to receive hospice and palliative care simultaneously with traditional medical treatments.

That is not the case in Pennsylvania, and the task force is examining what it can do to change that."

Music Therapy Included in End-of-Life Care

This Associated Press article reports on the increase of music therapy as part of end-of-life care, both in hospice and hospital settings.

According to Al Bumanis, director of communication for the American Music Therapy Association, there are 250 music therapists in the country whose practice is devoted to the terminally ill. There are currently 5,000 board certified music therapists in the United States.
"Music therapy in hospice continues to trend upward, and historically mirrors the general boom in hospice care seen in the country," Bumanis said.

Local Hospice Founders Honored by Community

This is an inspiring story about how five women's personal experiences with hospice inspired them to found a hospice in their community in South Carolina over 20 years ago. It includes a video clip from a ceremony where the women were given an award from the local newspaper.

They Don't Listen to Me

Robert Washington

I recently went to the hospital to assess a young woman for hospice acute inpatient care. Rating her pain 10 out of 10, she described it as coming from three sources—a Stage IV decubitus sacral ulcer, metastatic ovarian cancer spread throughout her abdomen and burning sensations running down her legs. I assured her that she could be helped, i.e. her pain could be significantly reduced within days if admitted to the inpatient hospice unit.

Although grateful to hear that help was on the way, she felt compelled to tearfully share that her greatest distress came from the fact that “they don’t listen to me.” She went on to explain that she pleaded with the nursing staff to reduce pressure on the ulcer yet they continued to ignore her, moving her by dragging the linen beneath her body. Her anguish was palpable as she cried: “The doctor announced that I’m going to die, but I’m not ready to give up.”

I explained that the task of hospice is to “gentle the journey” and reiterated that her pain could be better controlled—that very, very few people have to suffer pain of that magnitude in 2008. I further explained that the hospice philosophy is person-centered and based on informed consent. Thus, nothing would be done to her without her permission. This included, for example, moving her to change her bed linen. Finally, I told her that no one has any right to take away her hope and that she should go on believing that she would improve despite the view of the medical profession. I explained that people in her condition have the challenging tasks of both preparing for death while believing in a miracle and that she, like others, could do both.

This discussion took place in the presence of her siblings who had felt helpless watching her suffer. I used the opportunity to stress that hospice views the patient and those who love her as the locus of our concern—that we would provide emotional and spiritual support to her and her siblings and support them through our bereavement team for 13 months following her death. I clarified with all of them where the patient would go after her pain was better controlled and assuming she did not experience further decline. We discussed the pros and cons of a “Do Not Resuscitate Order,” and the patient opted to have one.

With approval of the inpatient director, the patient went to the unit for symptom (pain) management and died peacefully after being converted to Methadone for pain relief.

Tension and anger were no longer compounding her pain. She felt that hospice professionals were listening; she relaxed and allowed nature to take its course.

Robert Washington, Ph.D., MDiv

Communicating with Hospice Patients and Families

Vince Chiles

Vincent Chiles, LCSW has a master's degree in Social Work from Arizona State University. He works as a hospice supervisor for Covenant Home Care, a faith-based not-for-profit hospice provider. Vince has worked in hospice as a social worker and supervisor for over 9 years in Arizona and Pennsylvania. He has also worked as a drug and alcohol counselor, school counselor on The White Mountain Apache Reservation, and mental health therapist. HFA recently interviewed Vince for our e-newsletter.

Q: You’ve worked in hospice for many years now. What are some of the “common threads” that you see when communicating with hospice patients and families?

A. One of the greatest dilemmas is simply educating both families and professionals about what hospice care is. Even if we are simply trying to give them basic information, it’s sometimes like “selling snowballs in a blizzard”; very few people want to talk about death and dying until they really need to do so.

But yet, one of the most common phrases I hear once a family has experienced hospice is, “We wish we had known about hospice sooner…” I think something in that phrase signals what is really a normal grief reaction. It’s very typical for families, after a loved one’s death, to wonder in hindsight what could have been different about the experience; in many ways, that’s a way for them to begin processing the loss.

Read the full interview by clicking the "read more" link below.

Q. What are some of the common myths or misperceptions that you find about hospice?

A. The first is always that “hospice is a place you go to die”, and that hospice care only really happens in the last days or hours of life. Another common myth is that patients in hospice are “ready to die”--ie, someone will tell you that their loved one is not “ready” to die, and therefore hospice isn’t necessary yet. In all of my years of experience I have never met a person who wants to die, but I have met many who want or are ready for release from their pain and suffering. This misconception brings to mind a Navajo belief that if we think something bad will happen, we’re inviting that thing to happen. It’s a very unconscious, almost archetypal response, yet it can keep families from receiving the full benefits that hospice can provide.

Q. Once a patient is in hospice care, what information is most important to the patient and the family, especially when death is imminent?

The first thing that families need is the knowledge that there is a person who is willing to listen to them and hear their concerns. They need someone who is willing to be present and support them, especially as the death of their loved one approaches.

I often use the analogy of being a new parent, having a fear that your actions may somehow cause discomfort or distress (some parents even think they might “break” the baby!) Many families experience similar fears when a loved one is dying--will I do something to hasten the death, or to cause suffering? But just as new parents intuitively understand how to be kind and loving, families whose loved one is dying should trust that same intuition.

In hospice, we often find that family caregivers may ask the same question many times, even when they’ve heard the same answer before. Facing the death of someone you love is emotionally overwhelming, and families need to be patient and gentle with themselves. Hospice staff truly believe that there are no stupid questions; families should always feel that they can ask whatever questions they need to, whenever they need to.

Q. The actual dying process can be a confusing and difficult time for family members, even with the support of hospice care. What advice do you offer from a professional perspective?

A. One occurrence that I see often, both with families and professionals, is the onset of what I call “elder speak.” Seemingly out of protection, or a perceived way of expressing comfort, families and professionals will being speaking to the dying person in a high voice, almost in a childlike tone. While this type of communication comes from concern, caregivers need to remember that the dying person is first and foremost a person. That person had a full life, spent in a career, maybe raising a family, making connections with friends. That person experienced trauma and loss and developed coping mechanisms along the way. Most patients in hospice are older, so they have maturity and wisdom. It is tragic to me that these people are often treated more like children as death approaches, when what they truly need and deserve is dignity, respect, and honesty.

Q. Hospice care offers a unique system of support to families while a loved one is dying. How does that communication and support help families after the death?

A. After the tragedies of September 11, there was an increased awareness of the grief surrounding sudden and traumatic loss. The #1 indicator that prevents complicated grief has been shown to be the ability for someone to say goodbye to a dying loved one. I would say that 99.9% of the time, hospice does a wonderful job educating families about the importance of using the time in hospice care to say goodbye, to make amends and complete any unfinished business. In my experience, I truly see most survivors in hospice doing very well throughout their grieving. A woman who runs one of our support groups observed that few of the families served by our hospice actually attend our groups; that may be in part because the experience of their loved one dying in hospice care really aided them in their grief journey, even before the death.

I see death as the second great mystery of life, after birth. Yet in death, the mystery is compounded because there is no tangible proof of that mystery, like the proof that a new baby can provide. That absence of life confuses us, and that is grief.

If families are given the opportunity to do everything they can for a loved one during the dying process, and given support to muster the courage to be really present during that time, that experience may bring a better understanding and acceptance of this mystery. When hospice survivors generally feel like they did everything they could, that can help them grapple with the “what if’s?” that may well up during grief.

Q. HFA’s upcoming teleconference will be focusing on Children and Loss. In your experience, what do you find important in communicating with children about death and dying?

A. People who work in hospice are so passionate about it, and what often drives them is seeing the results of their work in action. Having the opportunity to teach children that death and grief are natural processes in life can be extremely rewarding.

As with adults, platitudes and patronizing are not good. A quote attributed to Albert Einstein says, “The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift.” Kids have not learned to live by that “servant”; they are extremely intuitive. Kids need honesty and the opportunity to share their feelings and emotions, without sugarcoating or trying to make it “better” than it is.

I once worked with a teenager on a reservation. He and his friend had both been drinking. He passed out outside, his friend passed out inside, and then his friend died when the house caught on fire. This teen was a textbook example of a dysfunctional, deviant individual. Yet the first thing he asked when I met with him was if I would help arrange for a Medicine Man to come pray for him and his friend. Intuitively, he knew what he needed and was able to seek out that very personal solution.

And we need to remember that kids change; every year, it seems they are a new person, a new personality. Paying attention to those developmental changes is very critical. Adolescents especially need to be given opportunities to grieve that allows their integrity and personality to remain intact. I once worked with a Mexican-American family in Arizona whose grandmother, the matriarch of the family, had died. She had over 50 grandkids, some of whom were teen gang members. A typical support model, like attending a teen grief group, was not going to work for these boys, but yet they were all devastated by the loss. I suggested to them that they go into the bathroom and run the water as loud as they could, to give themselves a way to express that grief and still retain their sense of self that was so important.

Q. You are clearly passionate about hospice and the work that you do with dying patients and families. What about hospice care do you find most compelling?

A. Hospice care allows us to acknowledge that quality care for the dying is just as necessary and valid as is curative care. To me, hospice families are modern-day heroes. As they care for a loved one who is dying, they face their own deepest concerns and fears. These families are willing to go to a real threshold, and a true shift can happen in that process. It is our vulnerabilities that unite us; working in hospice allows us the opportunity to help families make the most of that and to offer support along the way.

New Guidelines Issued For End-of-Life Care

The American College of Physicians (ACP) has issued new guidelines to address palliative care for seriously ill patients. The guidelines address three common symptoms experienced by patients who are approaching the end of life: pain, shortness of breath (dyspnea), and depression. An article from MedPage Today also addressed how doctors determine when end-of-life care should begin. "Asking clinicians 'Would it be a surprise if this patient were to die within six months?' is being used widely but also has had no rigorous testing," according to Karl A Lorenz, M.D. and colleagues of the Veterans Affairs Greater Los Angeles Healthcare System. Their review of existing literature and reports resulted in the ACP's new guidelines. The article stated:

"For those with serious illness at the end of life, the guidelines recommended that clinicians should:

• Regularly assess patients for pain, dyspnea, and depression.


• Use therapies proven effective to manage pain, which for cancer patients includes nonsteroidal anti-inflammatory drugs, opioids, and bisphosphonates.


• Use therapies proven effective against dyspnea, which include opioids in patients with unrelieved dyspnea and oxygen for short-term relief of hypoxemia.


• Treat depression with proven therapies, which for cancer patients includes tricyclic antidepressants, selective serotonin reuptake inhibitors, and psychosocial intervention.


• Ensure advance care planning, including completion of advance directives, for all patients with serious illness."

Department of Veterans Affairs Providing Hospice Care to More and More Veterans

This press release from the Department of Veterans Affairs discusses the growth the VA has experienced providing hospice and palliative care services to veterans.

"Nearly 9,000 veterans were treated in designated hospice beds at VA facilities in 2007, and thousands of other veterans were referred to community hospices to receive care in their homes. The number of veterans treated in VA's inpatient hospice beds increased by 21 percent in 2007. In addition, the average daily number of veterans receiving hospice care in their homes paid for by VA increased by 30 percent this past year.

Because of the large number of World War II and Korean era veterans and a tripling of the number of veterans over the age of 85 from 2000 to 2010, the increase in the need for hospice care is expected to continue. The proportion of Vietnam-era veterans over the age of 65 will continue to increase through 2014, when Vietnam veterans will account for nearly 60 percent of all veterans in that age group."

Informing the Public About Hospice in the Internet Age

At HFA we’ve been noticing more video documentaries and audio broadcasts about hospice and the end-of-life recently. Some of these have been made available to download for free. The amount of multi-media available online can be overwhelming. Go to YouTube or Google Video, search for ‘hospice’, and you can find thousands of videos, from local hospice documentaries and informational clips, to personal life reviews recorded by family members and shared with the world. End-of-life issues have also received a lot of attention recently in movies (for example, Away from Her, and Two Weeks). These visual presentations -- particuarly those told by families and hospice patients themselves -- sometimes speak louder than words on the printed page (or computer screen.) For our readers, here's a small sampling:

· 203 Days
A short documentary about end-of- life decision making, palliative care, caregiving and hospice. “It is an unflinching look at the day-to-day interactions between patient and caregiver, in this case an 89 - year - old woman who is living with her daughter.” By Bailey Barash, The Weinstein Hospice, Atlanta, Georgia

· Voices of Hospice
“Voices of Hospice tells the stories of three families and their reflective experiences with hospice. Each of these families share very real insights on how hospice touched their lives and the life of their loved one. Poignant, emotional and moving, Voices of Hospice, is an unscripted, real life view of families who have faced a life limiting illness and the hospice decision. The documentary took over two years to complete and more than 800 hours to produce.” Community Home Care & Hospice, location here

· The Hospice Experiment
“The '60s were a time of social movements and big changes, but a quieter revolution was underway too - one led by a few middle-aged women who wanted to change our way of death. They were the founders of the hospice movement.” This is an hour-long radio broadcast from American RadioWorks.

· Hospice Chronicles
“It's been forty years since St. Christopher's Hospice – the first modern hospice – opened in a suburb of London. Since then, millions of people around the world have chosen hospice at the end of their lives, with many patients choosing to receive care in their homes. Over the course of eight months, team Long Haul followed two hospice volunteers through their training and first assignments in patients' homes. Trained to provide "respite care," the volunteers set out to give family members a break from their caretaking responsibilities. And while one has a chance to reflect on her patient's life in a intimate setting, another gets to explore death in a rather unexpected way – a way that training never could have prepared him for.” This is an audio broadcast.

· Six Months
“This emotional and heart-wrenching special features the stories of real people who are making the journey through the final months of their lives. After Eric and Janice both receive a terminal diagnosis, they quickly begin to see things from a unique perspective, and they challenge others to examine their own lives for the things that are truly important.” Check for listings.

· A Brief Selection from YouTube
– employees at Regency Hospice, (Hiawasee,GA) discuss why they provide hospice care
– a montage of clips from Richard House Children’s Hospice in London
– a hospice nurse talks about the care she provides
– video to promote discussion among hospice/palliative care providers

High Cost of End-of-Life Care in New Jersey

A guest blog on NJ Voices by Richard J. Scott, a physician and president of The Medical Society of New Jersey, addresses the high costs of end-of-life care in New Jersey. Scott argued for a wider use of advance directives, and the expansion of hospice services in the state.

The Wounded Warrior--Special Issues for Veterans at the End of Life

700,000 U.S. veterans die each year. For many, the training they received as soldiers and the battles they faced in combat greatly influence their end-of-life experiences. Deborah Grassman, Hospice Coordinator, Bay Pines VA Medical Center in St. Petersburg FL, has pioneered identifying the unique experience of veterans (PDF) at the end of life.

HFA Interviews Margaret Clausen, California Hospice and Palliative Care Association

Hospices have always been on the forefront of offering community support during times of public tragedy and loss. But the recent wildfires in Southern California served as a difficult reminder that, as hospice staff scramble to help patients and families, their own homes and lives may be directly impacted by the tragedy as well.

HFA's Lisa McGahey Veglahn recently spoke with Margaret Clausen, Executive Director, California Hospice and Palliative Care Assn (CHAPCA), and President and CEO, California Hospice Foundation, about how hospices in California have coped during these difficult weeks. Ms. Clausen also talked about other issues facing members of CHAPCA, the partnerships they are forming to address these challenges, and the opportunities that lie ahead. Read the full interview by clicking the "read more" link below.
Q. How were your hospice programs and the families they serve affected during the wildfires in October?

A. While many programs in the affected areas had to deal with evacuating patients and their families, we are thankful that the loss of property and life has not been as severe as it might have been. Most of those people being cared for by hospice were able to be moved to skilled nursing facilities or to family homes in other parts of the state. Some patients had to be moved more than once, which of course added additional stresses to those families.

And while hospice staff were working to help these families, many of them were facing evacuation and potential loss of property at the same time. At one hospice program, more than one-half of the staff had to be evacuated, and another program was unable to operate out of their office for a number of days. For the most part, all of these families have been able to return to their homes, but are facing severe damages from water and smoke, as well as unanticipated expenses related to the evacuation.

Q. How has CHPCA responded to help these affected members?

A. The California Hospice Foundation (CHF) has created a California Hospice Families Relief Fund, a restricted fund created to ease the financial burden of hospice patients and families whose homes were in the path of the fires. [Note: Hospice Foundation of America has donated $5000 to the California Hospice Families Relief Fund to help hospice families with extraordinary expenses incurred as a result of the fires.] Unanticipated expenses for the families include medical transportation to relocate patients living in evacuated or burned areas, special professional cleaning to remove fire residue from homes of patients with compromised respiratory systems, and lost wages for family caregivers who helped to evacuate or stayed at the bedside of their loved ones during the crisis.

We have already processed a number of requests. One hospice staff member had to be away from home for 3 days, and has a daughter with special health needs. In addition to staying in a hotel, they had to replace a great number of medications and other needs for their daughter. When they returned home, they were still without electricity for a number of days, and also had to contend with very poor air quality. Another staff member found, upon returning to her neighborhood, that while her home was standing, seven homes on her block had burned to the ground. Many of these expenses are not covered by FEMA or private insurance, and the CHF is pleased to be able to offer this support to our members and the families they serve.

Q. How did California hospices respond during the crisis?

A. I was pleased and proud to see how many hospices shifted into “disaster-planning mode.” After the Cedar Ridge fire three years ago hospices in California recognized the importance of developing disaster response plans. CHAPCA has offered conference programs on disaster planning to assist hospices in this process. And luckily for the patients and families, all of the programs that I spoke to during the fire had their own set of plans, which they were able to implement quickly and successfully.

I would strongly encourage all hospice programs to develop a disaster response plan, if they have not already done so. No matter where you live, an event could occur that would require immediate action, and both your staff and the families you serve will benefit greatly.

Q. In your 14 years with CHAPCA, what are some of the changes that you have seen in the field of hospice care?

A. One of the most notable changes has been in the rapid growth of hospice providers. While I think this growth presents both challenges and opportunities, one very positive impact has been an increased awareness of hospice among the general public. People have more information about quality end-of-life care options, and hospice usage has been rising in California. I see the knowledge base growing among health care professionals as well; there is a larger body of knowledge about what hospice is and the quality care that hospice can provide.

Q. What has been your experience with the advent of palliative care?

A. CHAPCA added “palliative care” to our name in 1999, but we had honestly not been very active in providing information for our palliative care members. Thanks to the leadership of a dedicated board member. Dr. James Hallenbeck, we have really begun to explore what our palliative care members need from a membership organization, and how to develop links between hospice and palliative care. Dr. Hallenbeck has formed a group of palliative care providers who meet regularly to develop educational programs and to talk about their special needs. Many palliative care staff tend to feel isolated, working in small programs within hospitals, and we have been able to provide critical networking opportunities.

At the same time, it is important to note that the goal is not to have palliative care emerge and establish itself as a model that is separate and distinct from hospice; the shared goal for all of our members is to provide quality end-of-life care to the families in California and Nevada whom we serve.

Q. What other links have developed between your members?

A. Dr. Hallenbeck is a physician at the VA in Palo Alto, and has helped us to develop some very exciting partnerships between hospice programs and the VA. Working on these programs has been extremely interesting and educational. Many veterans have specific needs and issues because of their experience in the Armed Forces, and sometimes at the end of life those needs have not been recognized and therefore have not been met. We look forward to continuing this partnership and increasing the quality of care that we can offer to all veterans.

Q. In your role as Executive Director of CHAPCA, you track legislation and provide advocacy and public policy support for your members. What are some of the issues that your members are facing in the next year?

A. Like many states, California is facing a severe nursing shortage. The state legislature has tried to address the issue several times, but so far there has been no substantive change. One possible solution that we are exploring is the use of “med-techs”, which some other states have tried with success. But not everyone is convinced that this is the right direction.

And as is most everyone in the country, we are looking at major issues surrounding health care reform. It’s a very big and complex issue in California, of course; we have a very large population of uninsured people. CHAPCA has participated in conference calls with the Governor to address the concerns; one of the major stumbling blocks is economic, in terms of who will actually pay for the coverage. I think this issue will continue to be an important topic both in our state and nationally.

Q. Are there specific legislative issues that CHAPCA is involved with right now?

A. Currently we have a bill in the California legislature that would allow hospices to own a freestanding hospice inpatient facility under their hospice license or to operate a hospice inpatient unit within another facility under their hospice license. As baby boomers continue to age and that demographic shifts, there simply will not be enough skilled nursing facilities or family caregivers able to provide quality end-of-life care. This bill would allow hospices to either build freestanding inpatient hospices that would be licensed as such, or to contract with a hospital or other facility to provide licensed hospice care. I believe this bill will be successful.
CHAPCA is also working with a coalition of health care providers to develop legislation that would create a medical set of orders to be used at the end of life, based on the POLST forms used so successfully in Oregon. [for more information, go to POLST.org]

Adding these forms would be a great service to patients and families, to help them be clear about what interventions they do and do not want at the end of life, no matter where they are.

CHAPCA is also part of a coalition that successfully passed legislation in 2006 that directed the Department of Health Services to develop and submit a waiver to the Centers for Medicare and Medicaid Services (CMS) to allow hospices to provide pediatric palliative care services to a pilot population of Medi-Cal eligible children. The first draft of the waiver has now been submitted to CMS and we are anticipating their response within the next month. A final draft will be submitted by the end of this year and we hope that we will actually be able to begin providing services in 2008. This is an exciting project because it will allow a population of pediatric patients who currently don’t access hospice services very often to receive concurrent curative and palliative care services. If it proves to be successful in terms of budget neutrality (which is required by a CMS waiver), we would look towards expanding the program in the future to all eligible children in California.

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Margaret Clausen has served as President/CEO of the California Hospice Foundation (CHF) and Executive Director of the California Hospice & Palliative Care Association since 1995. Under her leadership, the two organizations have implemented long-term strategic plans to promote access and availability of quality hospice and palliative care for those suffering with life-threatening illnesses. She has worked with state and federal legislative and regulatory bodies and with many local and statewide coalitions to expand access to care for underserved populations and to identify and eliminate barriers to access.Margaret has served on the Board of Directors of the National Hospice & Palliative Care Organization; on the Board of Directors for Community Health Charities; on the Advisory Board for the California Coalition of Compassionate Care; on the Steering Committee of the Northern California Pain Initiative; and on the Public Policy Committee for the Children’s Hospice & Palliative Care Coalition.

New Study Addresses How Hospice Care Impacts Medicare Expenditures

A new study conducted by Duke University's Sanford Institute of Public Policy, shows that hospice care provides savings to the Medicare program. The average savings were $2,309 per person for patients who used hospice care versus non-hospice users. Other recent studies have offered competing conclusions. Some have indicated no cost differences, while others have indicated higher costs. When referencing this previous research the new study's authors state, ". . .uncertainty remains about the ability of hospice to reduce medical expenditures near death, even among recent methodologically sophisticated papers. . ."

Published in the October 2007 issue of the journal Social Science & Medicine,the study titled, “What length of hospice use maximizes reduction in medical expenditures near death in the US Medicare Program,” attempts to resolve this discrepancy by addressing the biggest obstacle to making a precise evaluation, namely ". . .the period of time over which costs of hospice users and controls are compared." Other research has focused on the last year of life rather than the actual period the hospice benefit is used.

Unlike this previous research, the new study examined costs from the day of hospice inclusion until death, and compared those costs on a day-to-day basis. The study included Medicare beneficiaries who died from 1993 to 2003. The authors ". . .identified hospice users and then created a control group of persons who did not use hospice, but who were otherwise similar."

In 1983, the hospice benefit was added to the Medicare program and use of hospice by Medicare patients has continued to rise. Citing other researchers who have demonstrated that hospice improves the quality of life for patients and family members, the authors conclude that ". . . the Medicare program appears to have a rare situation whereby something that improves quality of life also appears to reduce costs."

How Life's Experience Shaped a Hospice Career

Vince Chiles, MSW

In the summer of our nation’s Bicentennial my aunt Joan came to live out her last days at my childhood home. I was 14 that summer, and in the midst of the confusing time of adolescence, my mother’s youngest sister was dying of breast cancer. Aunt Joan needed a caregiver, and our home was the most logical place for her to come live her final days. In 1976 there was no hospice in our town and there were only a few hospices in the United States. My mother did not have a nurse to visit and instruct her on how to administer pain medication or what to do in the event of my aunt’s death. There were no counselors or social workers to visit Joan’s family to provide emotional support and explain what was happening before our bewildered eyes.

My memory of my aunt prior to that time was one of a vibrant, joyful, and generous soul, who loved her nephews and nieces deeply. When she came to live out her last days, she was beaten by the rigors of cancer and radiation therapy. In her despair and discomfort she was bitter and disillusioned by the grave reality of what remained of her life.

My aunt Joan was in the midst of her life; I am as old now as she was when she passed and can’t help but think how her experience would have been different if she, her family, or even I would have had the services of a hospice.

As a hospice supervisor I can’t help but think how those last days for my aunt Joan have influenced my work in hospice. Hospice provides comfort for those at the end of life and does that with compassionate visits and nursing education regarding symptom management and medication administration. Nurses, social workers, chaplains, volunteers, and home health aides all visit at the bedside and are all comfortable talking about life and death and anything else the patient or family needs to talk about or say.

It seems to me now in retrospect that my aunt Joan was the first hospice patient I ever met. I did not think at 14 that anyone should die like she did, and felt betrayed when I saw her in her casket as if she hadn’t even been ill. I strive every day to assure that patients like my aunt Joan receive the very best care so they can live out their last days free of pain, and as full of quality and dignity as possible. Hospice assures that we each can live our lives to the very end with a sense of completion and peace. I am so blessed that I can help prevent the confusion I felt at 14 for other youngsters and families everyday in my own work in hospice.

Vince Chiles, MSW

Celebrate Hospice and Family Caregivers This Month

November is National Hospice Month, a month to recognize the invaluable work that hospices do each day, to educate consumers about the benefits of hospice, and to honor those who cope with caregiving and end-of-life issues in their own lives.

HFA has some excellent resources that shatter myths about hospice care and can help promote the concept of hospice.

National Family Caregivers Month (NFC Month) is designated as a time every year to thank, support, educate and celebrate more than 50 million family caregivers across the country currently providing an estimated $306 billion in "free" caregiving services. This year NFC Month will focus on family caregivers speaking up for their rights. The National Family Caregivers Association has a number of materials online.

What is Hospice?

John Chuchman, author and Pastoral Bereavement Educator, offers this poetic post about hospice. His blog is ". . . dedicated to sharing our experiences of loss in life, grief and healing growth."

California Fire Update: HFA Responds with Donation

(Nov. 1) – In response to financial needs of hospice patients and families affected by recent wildfires in Southern California, Hospice Foundation of America will donate $5000 to the California Hospice Families Relief Fund to help hospice families with extraordinary expenses incurred as a result of the fires.

The California Hospice Families Relief Fund, managed by the California Hospice Foundation (CHF), is a restricted fund created to ease the financial burden of hospice patients and families whose homes were in the path of the fires. Unanticipated expenses for the families include medical transportation to relocate patients living in evacuated or burned areas, special professional cleaning to remove fire residue from homes of patients with compromised respiratory systems, and lost wages for family caregivers who helped to evacuate or stayed at the bedside of their loved ones during the crisis.

“These families are in the midst of one of the most emotionally difficult periods possible – the impending loss of a mother, father, spouse or other family member. In the aftermath of the fire, they are urgently trying to restore a sense of normalcy for their loved one’s comfort. They were already facing special expenses but now face new financial pressure,” said Laura Miller, past chair of the California Hospice Foundation and president and CEO of The Elizabeth Hospice, which serves some of the hardest hit areas in North San Diego County,

Individuals may send tax deductible donations to:

California Hospice Families Relief Fund
c/o California Hospice Foundation
3841 North Freeway Blvd.
Suite 225
Sacramento, CA 95834

One hundred percent of the donations made to the relief fund will go to affected families. Administrative costs are being covered by CHF. A three-person panel will review applications for financial assistance and distribute funds appropriately.

For more information on the California Hospice Families Relief Fund, call 888-252-1010, or visit the California Hospice Foundation’s website, www.hospicefoundation.info. The California Hospice Foundation is a registered 501(c)(3) charity.

Who Wants Hospice: Racial Disparities in Who Receives End-of-Life Care

According to a report by the California HealthCare Foundation, ethnic minorities enroll in hospice care at lower rates than whites. Only six percent of hospice patients were African-American in 2004. Four percent were Asian-American, 15 percent were Latino, and 74 percent were white.

Medicare admissions requirements are thought to be at least partially responsible. For Medicare funding, a hospice patient must forgo all curative treatment, including chemotherapy and dialysis. Ethnic minorities are thought to be more likely to pursue aggressive treatment until the death.

Also, African-Americans are more concerned than other groups about finding caregivers who will respect their culture. White families are more concerned about pain alleviation, while cost of care is the primary concern for Hispanics and Asians.

The report concludes by recommending that (1) Medicare regulations be reformed to allow aggressive treatment concurrent with hospice care; (2) Hospice employees be trained in cultural sensitivity; and, (3) emergency departments expand their bereavement services because ethnic minorities are more likely than whites to die in a hospital setting.

Readers who would like to learn more about being a culturally competent caregiver should mark their calendars for the of spring of 2009, when Hospice Foundation of America will host its 16th annual teleconference: Living With Grief: Challenges of Diversity.

Tutu Discusses Differences In Death and Dying Rituals

Naomi Tutu, daughter of Archishop Desmond Tutu, shared her experiences with the rituals surrounding death and dying in her home country of South Africa and in the United States. She contrasted the more private, shorter rituals often found in the U.S. with the more communal rituals, often taking place over a year, in South Africa. Ms. Tutu spoke at Union College on behalf of the Foundation for Hospices in Sub-Saharan Africa.

(www.fhssa.org)

Vigil Hospice Volunteer Programs Offer Care at the End-of-Life

The Sun Chronicle (Massachusetts) and and the Chicago Tribune have published articles on vigil volunteers. These are hospice volunteers who are available to be with a dying person when death occurs.

Vigil volunteer are generally experienced hospice volunteers, who have already received training and provide hospice support such as respite for caregivers, transportation for patients or other assistance like running errands. The volunteers had an additional two hours of training for the vigil program.

“Back Off on Hospice Care”: Journalist and author Myra MacPherson responds to Opinion piece on end-of-life decision-making

Myra MacPherson has written a cogent examination of hospice care for The Washington Post, focusing on some of the common myths and misperceptions that still exist after more than 25 years. Ms. MacPherson, a member of the International Work Group on Death, Dying and Bereavement, is a journalist and an author. She also serves on the board of the Hospice Foundation of America.

Ms. MacPherson’s piece is in response to a recently published Opinion piece by Charlotte Allen, “Back Off! I’m Not Dead Yet”, published in the Outlook section of The Washington Post.

The Positive Role Hospice Volunteers Play in End-of-Life Care

This post from The Kansan.com shares the experiences of a hospice volunteer at Hospice Care of Kansas. One volunteer, Jennifer Wedan, explains why she became a volunteer. '“I wanted to give something back. Something was laid on my heart to help people go through this experience.”'

Hospice Program Helps Patients Keep Pets

Pets are a central part of many peoples' lives, bringing comfort and companionship. Yet when someone becomes terminally ill, it can be difficult to keep up with a pet's care, or even keep a pet at all if the illness necessitates a move. One hospice program in Tulsa, Oklahoma, has developed an innovative program to allow people to keep their pets even as they face illness and death.

Report Shows That African-Americans Continue to Receive Hospice Care Less Than Whites

A new study in the Journal of Pain and Symptom Management shows that African-Americans with a non-cancer diagnosis are less likely to receive hospice care than whites with a similar diagnosis. While data shows that this "racial gap" has gotten smaller in the last few years with patients with a cancer diagnosis, there is still outreach to be done.

Ruby L. Bailey of the Detroit Free Press addresses this study and the mistrust and different cultural values that have helped to feed this gap.

Health Commentary's Video Blog on Hospice

This video blog by Dr. Mike Magee for Health Commentary does an excellent job of explaining what hospice is and how it works. The Health Commentary website allows viewers to upload their own videos regarding healthcare.

For more information on myths and facts about hospice care, see HFA's Hospice Info - Myths and Facts. Also, HFA held a live telephone network program in March 2006, which discussed the basics and benefits of hospice care.

Celebrate World Hospice and Palliative Care Day

World Hospice and Palliative Care Day is October 6th. The celebration will include Voices for Hospices, a global musical marathon event which has over 500 concerts around the world. World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world.

For more information, go to www.worldday.org

Local Editorial Honors the Work of Hospice in Improving End-of-Life Care

This editorial from the Tribune-Star (Terre Haute, Indiana) published September 29, 2007 stresses the importance of the hospice movement in elevating end-of-life care in the United States. Despite the availability of hospice services under Medicare, Medicaid and some private insurers, many programs rely heavily on outside donations, and the dedication of trained volunteers to assist in caregiving.

Hospice Patient Shares His Outlook on Care

Some of the most powerful messages about hospice care come from those who benefit from it. Ben Forker, an Iowan who is terminally ill with cancer, shares his realistic but often upbeat views of facing death, with the help of hospice.

The Importance of Volunteers in Hospice and Palliative Care

Nancy Forsyth, a palliative care volunteer for 25 years, speaks of the importance of volunteering to care for the terminally ill. Forsyth has an aggressive form of lung cancer and is forgoing further treatment for the cancer. The Shoreline Beacon article discusses how her experience as a volunteer is helping her while dealing with her own illness.

Are you interested in becoming a hospice or palliative care volunteer ? Volunteers in hospice find it personally gratifying, intellectually stimulating, and emotionally meaningful to assist those in need at a critical point in their lives.

The Role of Hospice for Patients and Families

The Daily Siftings Herald is publishing a series of articles about the Baptist Health Hospice in Arkansas. The director of the hospice, Barbara Stewart, talks about the program and the role of hospice in end-of-life care.

If you are interested in learning more about hospice, read HFA's informative review on hospice.

Published September 24, 2007.