Practicing Slow Medicine in the Elderly

Last week’s New York Times ran an article about a medical approach known as “slow medicine.” Reporter Jane Gross examined use of the approach, which is based on research developed at the Dartmouth Medical School, at a New Hampshire retirement community. Slow medicine “encourages physicians to put on the brakes when considering care that may have high risks and limited rewards for the elderly, and it educates patients and families how to push back against emergency room trips and hospitalizations designed for those with treatable illnesses, not the inevitable erosion of advanced age.”

The article noted that like hospice care, slow medicine offers a philosophy of comfort, rather than cure. The approach is becoming more common in nursing homes, but is rare for elderly living at home or in other types of assisted living.

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.

Massachusetts' Efforts to Improve Health Care Include Focus on End-of-Life

The Commonwealth of Massachusetts Health Care Quality and Cost Council recently released its annual report. Along with goals to improve treatment of chronic illness, decrease hospital infection rates, improve quality reporting and reduce racial and ethnic disparities in health care, the Council also set a FY 2008 focus on end-of-life care.

Develop processes and measures to improve adherence to patients’ wishes in providing care at the end of life. Ensure that health care providers ask about and follow patients’ wishes with respect to invasive treatments, do not resuscitate orders, hospice and palliative care, and other treatments at the end of life.

The Council set out nine strategies to achieve these goals, including: a statewide public health education campaign; development of something similar to POLST (Physician Order for Life Sustaining Treatment) orders; require hospitals, extended care facilities, and home health organization to offer formal hospice and palliative care programs; measures insure physician and nurse competency in end-of-life care. You can also read a summary of the report by JudyAnn Bigby, M.D., Health and Human Services Secretary and chair of the Council.

Medical Technologies Create New Ethical Quandaries at the End-of-Life

The Washington Post wrote an article last week about the new ethical dilemmas created by advances in medical technologies. Specifically, heart pumps known as left ventricular assist devices (LVADs), which were originally developed as a bridge technology to organ transplant, but now are also used for years in patients. The article discusses the different ways physicians and ethicists view the device, from being similar to feeding tubes and the like which a patient has the right to remove, to being more comparable to an organ itself.

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.

False Memories May Complicate Advance Directives

Reported in the ScienceDaily, a study appearing in the journal Health Psychology addressed the use of advance directives and living wills. Disturbingly, researchers say that many people don't remember what their wishes were at the time they made their advance directive, and hold false memories of their end-of-life preferences.

“Living wills are a noble idea and can often be very helpful in decisions that must be made near the end of life. But the notion that you can just fill out a document and all your troubles will be solved, a notion that is frequently reinforced in the popular media, is seriously misguided,” said Peter Ditto, professor of psychology and social behavior at UCI> [University of California - Irvine].

The study appears to indicate discussions about end-of-life decisions should be ongoing.

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

Variations in Cost of End-of-Life Care Get a Closer Look

Two recent articles have examined the data from Dartmouth's annual Atlas of Health Care study at the local level in Massachusetts and Colorado. The first, from The Harvard Crimson, reports on some criticism of the study from Thomas H. Lee, Jr. the network president at Partners HealthCare, who owns both Mass. General Hospital and Brigham and Women’s Hospital. Lee raised the issue that data was not adjusted for differences in medical costs by state. For instance, medical professionals' wages are 20 percent higher in Massachusetts than in Minnesota (which had lower end-of-life care costs.)

Reporter June Q. Wu also interviews James B. Conway, who sits on the Mass. Health Care Quality and Cost Council. A report by the council noted that although over 70 percent of Americans say that they would prefer to die at home, only one fifth of deaths in Massachusetts were at homes in 1997. Despite legislation to increase end-of-life options, the number had only risen to 22 percent by 2005. Conway, who is a representative from the Institute for Healthcare Improvement, a non-profit organization based in Cambridge, addressed the difficulty in changing those statistics. “We live in a world of islands. Doctors do their piece, nurses do their piece, hospitals do their piece,” Conway said. “We haven’t yet put together a system to support the delivery of end of life care.” He also stated, “This is not something that will be solely fixed on one hospital, one clinic, one doctor’s office at a time,” Conway said. “It’s going to require coordination from everybody, from the people at health care companies to the ambulance driver. The community will be coming together in the name of the patient.”

As we noted in our original coverage of the Dartmouth study, hospice care was the only type of non-acute care that did not follow the variation in increased costs. A second article focusing on costs of end-of-life care in Grand Junction, Colorado appeared in today's The Denver Post. Grand Junction had one of the lower costs per patients recorded by the Dartmouth Atlas. Several factors are likely coming together to help lower these costs that involve how physicians are reimbursed and reviewed. Also helping, "Grand Junction has one well-respected, nonprofit hospice that works closely with the local medical community to provide care for those with severe chronic illnesses and to give options to those who otherwise might have to be treated and die in hospitals. Hospice caregivers attend more than half of all deaths in Mesa County."

We will continue to share new articles that refer to the Dartmouth Atlas on a local level, and we are encouraged to see some coverage now being given to the role that hospice can play in providing excellent end-of-life care.

UPDATE 4/28/08: The Miami Herald has joined in with an analysis of the Dartmouth Atlas for southern Florida. The article reports on testimony given by Peter Orszag, the director of the Congressional Budget Office, during a Senate hearing. The Herald reports on costs at six hospitals covered by the Atlas. The article noted that one of the lower cost hospitals also had a higher rate of referrals to hospice.

The report compares three Miami-Dade hospitals with high HCI scores -- Westchester, Mount Sinai and Hialeah -- with three that have much lower scores -- South Miami, Baptist and Jackson Memorial. Of these, Baptist has the lowest percentage of intensive care unit care during a final illness (25 percent) and the highest percentage admitted to hospice (46 percent), where treatment concentrates on comfort and alleviating pain.