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.

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.

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.

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.

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.

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

End-of-Life Care Survey of Upstate New Yorkers

Excellus BlueCross BlueShield recently released a survey of 2,000 adults living in upstate New York to assess their attitudes and actions regarding the use of health care proxies and living wills. Key findings:

• Considerable disparity exists between consumer attitudes and behavior as they relate to advance directives. Nearly 9 of 10 adults surveyed (88%) say it is very/fairly important that they have someone who could make medical decisions on their behalf if they had an irreversible terminal condition and were no longer able to make medical decisions on their own. Yet, only 42% indicated they have actually designated a Health Care Proxy who would assume this responsibility.


• Even fewer people reported completing a Living Will (26%), although 80% said it is very/fairly important for them to have such a document.


• Perceived importance of the two advance directives was high even among those who had not completed a Health Care Proxy form or a Living Will. Among those who had not completed a Health Care Proxy form, 81% said it would be very/fairly important for them to have a Health Care Proxy. Of those who had not completed a Living Will, three-quarters (74%) felt that it was very/fairly important for them to have one.


• Overall, about 4 of 5 residents surveyed felt that every adult should have a Health Care Proxy (81%) and a Living Will. Only a small percentage thought that Health Care Proxies and Living Wills were only for old or sick people.

Read the complete Executive Summary on their website.

Remember Me - Photographs of a New Hampshire Family's Journey through Illness and Death

The Concord Monitor and their former photographer Preston Gannaway, earned the Pulitzer Prize in journalism for her photo series which chronicled the death of Carolynne St. Pierre. The moving photographs, original articles, and multimedia presentation are online at the newspaper's website. The photographer and a reporter spent two years with St. Pierre and her family as they prepared for her death and grieved afterward.

Using Humor in Caring for the Terminally Ill

From the UK Journal of Clinical Nursing, Canadian researchers spent nearly 300 hours interviewing staff, patients and their families in both palliative care and intensive care units. They report that the use of humor, by patients and their caregivers, plays a vital role in "promoting team relationships and adding a human dimension to the care and support that staff provided . . ."

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)

Future Lawyers and Doctors Learn about End-of-Life Issues Together

In California, students from the McGeorge School of Law and UC Davis' medical school met for two class sessions on dealing with the rights of the terminally ill. As reported by the Sacramento Bee, 40 law students and 90 medical students participated in the classes.

"There's room for improved understanding between doctors and lawyers generally," said (Ned)Spurgeon, who teaches health law and elder law and policy at McGeorge. ". . . Hopefully, this will mean better-educated doctors and lawyers with respect to enabling patients to have their surrogates make better decisions."

The discussions that arose show that the students do have a lot to discuss. Some pondered whether patients anxiety could be lessened by not using direct terminology like the word "death" and others questioned a mock patient's competency when she expressed a desire not to receive certain treatments. A key goal was to learn how to help patients make end-of-life decisions, and decide who will act as their surrogate when they no longer can do it themselves.

Life Before Death Photo Essay

The Guardian online has published a photography study of portraits taken before and after death, by German photographer Walter Schels. Together with the accompanying interviews, it is a very moving collection.

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."

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.

Nevada Launches Living Will Website

Nevada joined other states offering an electronic repository for patients' advance directives and living wills:

The site is the state’s first online repository for advance directives, allowing health care professionals access to decisions about their patients’ end-of-life treatment options.

Advance directives, including living wills and Durable Power of Attorney for Health Care papers, are legal documents for individuals to communicate appropriate end-of-life care ahead of time. Advance directives are used when individuals cannot communicate this information to their healthcare provider themselves.

“Typically, people think advanced directives are an issue for older people, but this is an issue that affects everyone,” said Sally Hardwick, the center’s interim director and a lecturer for the University’s School of Public Health. “When individuals have an advanced directive, it alleviates pressure on family members to make a decision and allows the individual’s wishes to be carried out by a physician.”

Only 22 percent of Nevadans have advanced directives for end-of-life care. Further complications arise about end-of-life treatment, according to a 2002 Nevada survey of emergency medical service responders and emergency physicians, because advance directives are rarely seen by emergency room personnel.

“As an emergency room doctor with an interest in bioethics, I have witnessed patients in the hospital who are very sick and then a sudden event occurs,” Reno physician Kevin Brown said. “Having access to advance directives at the hospital is a concrete way to grant the patient’s wishes.”

We've previously posted about Oregon's plans to make it's POLST orders ("Physician Order for Life Sustaining Treatment") available electronically as well.

Preparing for the End of Life

Dr. Kirth Steele, who practices practices intensive care medicine, urges readers to take personal responsibility in planning for the end of life.

This is where personal responsibility enters the picture. We owe it to our families to think about and discuss these things far in advance of the inevitable decline and/or devastating illness. This allows us to retain control of our destiny and to come to terms with our eventual death. This also represents a chance to provide a final gift to those closest to us, the gift of relieving them of a burden as we talk openly and honestly about how we want to end our lives. It gives us a chance to ease them and ourselves into a state of mind which is, admittedly, uncomfortable for all of us.

No matter how well we plan and how much we practice good health habits, death will come and for some, suffering along the way to death. However, we can spare ourselves and our family's needless suffering and indignity by thinking about our values and understanding what gives us meaning far in advance of our inevitable decline and/or devastating illness. Though we cannot control how we will die, we can choose how we approach our dying and how we care for ourselves and others in the process. That choice to care may be the most valuable possession we have.

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."

Factors to Consider in the Use of Antibiotics in Dementia Patients

D'Agata and Mitchell's study in the Archives of Internal Medicine reporting on the use of antibiotics to treat infections in persons with advanced Alzheimer's disease (A.D.) brings to mind the complexity underlying the dilemmas surrounding care of persons who can no longer make therapeutic decisions for themselves. Many patients reside in an extended care facility. Most are elderly, female and lacking in definitive advance directives regarding management of infections they may develop in their final days.

Mitchell (Hebrew Senior Life's Institute for Aging Research), informs us that patients with advanced dementia ''frequently receive antibiotic medications -- especially in the two weeks prior to their death." A recent Pallimed blog (February 27, 2008) opines that this "multi-center prospective cohort is probably the best study to demonstrate the limited efficacy of antibiotics in patients with advanced dementia."

The Archives journal also includes an editorial response to the D’Agata and Mitchell study entitled, “Antibiotic Therapy in the Demented Elderly Population: Redefining the Ethical Dilemma.” This paper, which has generated intense commentary, mentions two reasons to question the administration of antibiotics to persons in the final stages of dementia:

• the lack of lasting improvement


• the possibility of predisposing to the development strains of bacteria that are resistant to commonly available antibiotics.

The commentary also points on how the decision to treat should be made, stating:

“. . .the ethical question of treatment of bacterial infection must encompass not just the deliberation over whether to withhold or withdraw treatment, but the decision to initiate it as well. All such decisions must ultimately be made individually, based on the medical situation and the expressed wishes of the patient and family, as well as on the physician's judgment of the benefits and risks entailed in treating vs not treating.”

Addressing this need for deliberation also raises the question of whether communication between the physician and the family is adequate. While it is easy to place responsibility for failures in communication at the feet of the physician, all who work with the patient share in the responsibility to communicate with the family of patients with advanced dementia. My experience in co-leading a support group for family caregivers of patients with Alzheimer's disease reminds me over and over that communication is not a one time event. Caregivers -- institutional and family -- require support as well as education. It is economical to provide this in a group that can share its knowledge with new members. Such a group is also a tremendous asset in providing support during bereavement.

I am also concerned that the discussion about administration of antibiotics to persons with end stage dementia thus far does not adequately deal with other factors that contribute to or result from the reflexive prescribing of antibiotics to persons with infections during the final phases of dementia. In the case of hospice care, there are a number of factors (imperatives) that contribute to the need for hospice/palliative care. One of them is the Therapeutic Imperative. This term suggests that there is a pressure, an imperative, to treat vs. not treat on the part of physicians, patients, family and caregivers. Physicians are reluctant to say there is "nothing more" they can offer. Patients do not want to relinquish hope. Caregivers and family members often urge doctors to "do something." Modern medicine has been held out as a right. Patients are consumers. They know that they want "something" rather than nothing. When the patient is severely demented and unable to make decisions, the family and sometimes the caregivers are reluctant to admit the inevitability of death.

Physicians are reluctant to be in a position where they have declined ordering a medication including antibiotics for elevated temperature in patients with advanced dementia. It is easier to order the medication even if it is against the physician's better judgment to do so. Further, physicians are cognizant of the legal implications of not providing a medication to treat a specific condition (like an apparent pneumonia) because of the risk of not practicing in accord with the standards of the community. The threat of being sued for malpractice is a constant presence in the lives of all physicians. In addition, our current system of physician reimbursement limits the frequency of visits. Time spent communicating with family and caregivers is covered only minimally, if at all. Due to the limited time physician are able to spend with patients’ families, it is not unusual for families to be unaware of all that is going on, including prognosis and the efficacy or lack of efficacy of various treatment alternatives.

Physicians need to speak with the family directly in order to communicate the reality of their loved one’s condition, and the efficacy of treatment options. Unfortunately, our current medical ethics, legal realities, and financial reimbursement structure work against this type of ongoing communication. The Archives commentary has created a dialogue in the area of medical ethics. There are many other areas to address regarding the difficulties in caring for persons with advanced dementia.

William M. Lamers, Jr., M.D.

POLST Orders May Be Coming to Washington State

The House in Washington state passed a bill that would establish POLST forms (Physician Orders for Life-Sustaining Treatment) that would allow individuals to express their end-of-life wishes. The bill is now headed to the state Senate. From The Seattle Times,

"House Bill 2494 directs the state Department of Health to develop a simple form that spells out a person's preference regarding emergency and life-sustaining treatment. The legislation also limits legal liability for health-care providers who act in accordance with the preferences expressed on the form."

"'For health-care providers in a medical emergency, it is a standard and understandable practice to do everything possible to save a person's life,' said Rep. Jim Moeller, D-Vancouver, who serves on the House Health Care and Wellness Committee. 'But the Physician Orders for Life-Sustaining Treatment form recognizes a basic truth: People have a right to personal feelings that don't necessarily fit with that practice.'"

Read our other posts about the POLST form.
http://www.hospicefoundation.org/blog/2007/12/why-talking-about-end-of-life-issues-is.html

http://www.hospicefoundation.org/blog/2007/11/states-looking-into-developing-new-end.html

http://www.hospicefoundation.org/blog/2007/12/oregons-polst-orders-are-going.html

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

End-of-Life Decision Making

Their names were Joe and Helena, and as we sat in the living room, their anguished expressions and trembling voices said it all. Their mother, Rose, had end-stage cancer and had just come home from the hospital on hospice care. Joe and Helena diligently shared the caregiving responsibility. They were eager to discuss a range of issues with me, but one thing troubled them in particular:

“The worst thing,” said Joe, “is how much she hates the feeding tube in her stomach. It’s so uncomfortable for her when we pour in the food. She has said all along that she didn’t want the tube, but when she was in the hospital they told her it was necessary temporarily, so she reluctantly agreed to it. The problem is, she’s never going to be able to eat on her own, so now the tube can’t come out.” [Read the full article here.]
His sister nodded tearfully and agreed, “When we put the food in, she looks at us pleadingly, asking us with her eyes not to do it. But we have no choice.”

And so began a lengthy, emotional discussion about end-of-life decisions, the goals of care, and the benefits and burdens of treatment. No one had told them that honoring their mother’s wish by removing the tube could be a loving and compassionate decision.

After I left, Joe and Helena continued the discussion throughout the evening and into the night, with each other and with their mother. In the morning they agreed to remove the feeding tube. They kept Rose’s lips and mouth moist, and delivered exquisite comfort care until she died a few days later. At the wake, and several times in the year since, they have expressed how grateful they are that they were able to frame the issue of tube feeding in a way that allowed them to honor their mother’s wishes, make her more comfortable, and give them a sense of peace mixed in with their grief.

Most of us don’t like to think or talk about serious illness and death, so when we find ourselves coping with our own or a loved one’s terminal illness we often feel as though we’re in uncharted territory and have no guideposts by which to navigate. Discussions about what kinds of treatment we want or don’t want at the end of life are likely to be more useful if we have them well before the decisions have to be made. Everyone, no matter how young or how healthy, should have an advance directive and designate a health-care proxy (even my 20-something kids have done so). Designating a health-care proxy is, in fact, especially important. There may be unforeseen circumstances or decisions at a future date, and those decisions will be made by someone; the only way for us to retain control over who speaks for us when we cannot speak for ourselves, is to designate who that person should be.

If it’s too difficult to approach these issues directly in your family, you can start by talking about a news item or a friend’s experience. It’s often less threatening to discuss such issues in terms of someone else. And sometimes it’s helpful to make it a group/family activity (that’s how my kids ended up with advance directives during a family reunion). What’s important is to get the discussion started.

A life-threatening illness can cause families to come together more than they have in years, as it did for Joe and Helena, or there may be so much disagreement and tension that the crisis only makes things worse. In either situation, it’s advisable to reach out to healthcare professionals from different disciplines—nurse, social worker, chaplain, or doctor—who can help us find our way. Culture and religious beliefs inform end-of-life decisions, especially regarding feeding tubes, so it is good to be able to call on people who are familiar with those issues. The transition from curative to palliative treatment is often a difficult one for patients and families, and it’s helpful to have the perspective of professionals who are familiar with the journey. They can help us keep in mind the goals of care, to ensure that treatment decisions conform to those goals.

And in the event of disagreement between the patient’s family and the medical team, a consultation with the hospital ethics committee is advisable. Any interested party can request the involvement of the ethics committee to help resolve disputes.

A life-threatening illness is not only a medical event, it is also an intensely personal journey of the heart and mind. It’s no wonder individuals are likely to approach the experience differently. Families may be torn between hope and despair, denial and acceptance, holding on and letting go, and coming to terms with the family as it is becoming rather than as it was. That is natural. And understandable. And forgivable. When all is said and done, it is not as important to be “right” as it is to be dedicated, humble, and forgiving.
Joyce Davidson, MS, CT

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."

Quality of End-of-Life Care To Be Examined in New Jersey

The New Jersey Hospital Association is holding a meeting of hospital medical directors to address patient end-of-life care. The medical directors are looking at a variety of solutions to improve care, including increasing use of palliative care, hiring end-of-life specialists, and promoting the use of advanced directives. The Star-Ledger recently completed a series on end-of-life care in the state, "New Jersey's High Cost of Dying," which showed Medicare patients in the state see more doctors, have more tests, and undergo more procedures at the end of life than in other states.

How Elders and Adult Children Discuss End-of-Life Preferences

This study appearing in the January 2008 issue of the CDC's Preventing Chronic Disease examines how adult children and elderly parents discuss end-of-life issues. Two researchers from the University of Georgia interviewed two groups, 15 older adults and 15 younger adults. The researches looked to answer the following questions.

1. How do elders express their EOLPP [end-of-life preparation and preferences] to their children?
2. Are their children receptive?
3. What are the barriers to this exchange of information?
4. What facilitates these discussions?
5. What differences emerge from examining the older and younger adults’ responses separately?
   

One of the research team's conclusions is that there is potential for health care and public health professionals to facilitate the dicussion about end-of-life preferences. They feel that this is a public health issue and offer the study as an initial step in understanding how children and their elderly parents approach the topic of dying.

California Offers a Pediatric Palliative Care Pilot Program

Five counties in California have been selected to prepare a new palliative care program for children with life-threatening illnesses. This would allow children to receive palliative and hospice care, while still continuing with aggressive medical treatment. California's pilot program can offer an alternative to parents who struggle with choosing hospice for their children. An article from the Santa Cruz Sentinel notes:

"Dying is not a prescribed science, especially with kids," said Ann Carney Pomper, executive director of Hospice Caring Project of Santa Cruz County, which takes care of five to 10 children each year. "It's difficult for parents to have to say 'yes' to some kind of indication that death is near.

"With the waiver, 'what is best for my kid?' can be the question," Pomper said.

Emotional Preparations for the End-of-Life Are Also Important

This article from the Gannett News Service, reminds readers that there are more than financial and legal preparations to consider when facing end-of-life decisions. Think about getting your emotional affairs in order at the same time you are completing a will, trust, or power-of-attorney papers. This may include sharing memories with family members or preparing letters for them.