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."