Questioning Cancer Therapy

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

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

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

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

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

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

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

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

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

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

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

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

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

Mourning Randy Pausch on the Internet

Wired.com published an article about how people mourn in the Internet age, specifically in the recent death of Randy Pausch, whose "Last Lecture" video has been viewed by millions. Alexis Madrigal refers to the outpouring of blog posts and comments posted to online obituaries as a new form of grieving, a distributed funeral.

It dawned on me that I was witnessing a new form of grieving: the distributed funeral.

Why watch the service on TV when you can comment on the obituaries themselves? As my friend and Dwell magazine editor Aaron Britt put it Saturday, "the internet is an open letter to everyone," and people began using any form text box on any webpage, related or not to the Pausch family itself, to make known their sadness.

At some level, these comments are a bit crazy. It wouldn't make sense in any other context to write or say what people are writing in the comments sections of blogs across the country. You can't imagine telling someone about Randy Pausch's death and them saying to you, "I am real sorry for your loss Jai," because you are not, in fact, Jai.

But given the searchability of the internet, this behavior isn't that nuts. It doesn't actually matter what URL you put your condolences on, it's all part of Googleverse, so Jai could find it if she wanted to find it.

He also compares this phenomenon to other displays of public grieving that have had for celebrities and public figures.

The mourning also mimics the way that people experience Pausch's powerful oration. You interacted with Randy through a little box embedded in a webpage. Your headphones piped his voice clear and strong into the center of your brain, almost as if some deep part of your own mind was delivering his nuggets of wisdom. He was talking to you alone, not the hundreds packed into a theater or your family gathered around the television. In response, then, it made sense to get personal and say, directly, "Thanks, Randy. We'll miss you."

This mourning splits the difference between the small and generally private funerals of our friends and family and the public spectacles that marked the passings of Stalin, or Elvis, or Princess Di. Millions of people grieved alone in the asynchronous communities of the internet.

Still, at whatever scale and medium chosen, all these death rituals retain their universal purpose. They all provide convincing evidence that though the star may die, the universe continues. Though the Marine is gone, the corps lives on.

The news of Pausch's death brought me a moment of pause. My thoughts have been with his wife, Jai, and their three children. In May I had a brief encounter with Jai at a park near their home. My family was taking a long drive from Pennsylvania to the Outer Banks when we stopped to let the kids stretch their legs. I thought she looked familiar as our children played near one another, but my suspicions were confirmed when I heard her telling her son that 'Grandma Pausch' was on a bench nearby. We exchanged a few words about the challenges of keeping track of all your children when one needs to use the restroom. I quietly told her she was an inspiration when I thought her kids would not hear the conversation. It was nothing really, a simple moment. I do not know the Pausch family, but I guess this is my moment of public mourning. My deepest sympathy to the Pausch family. I am sorry for your loss. I am inspired by your courage.

End-of-Life Planning More Likely After Discussing Wishes

Researchers at the San Francisco VA Medical Center say that patients who discuss their wishes for end-of-life care are more likely to complete advance directives. The study authors say these discussions should be encouraged and recommend considering "making oral advance directives discussed with physicians legally binding in all states, since many more people talk about end-of-life care with their physicians than spell out their wishes in written form. In most states, only written advance directives have legal standing."

The study, published in the June 2008 issue of the Journal of the American Geriatrics Society, looked at 173 patients at San Francisco General Hospital who had participated in a previous study comparing preferences for different types of advance directive forms. Six months after that study, the authors asked the participants if they had made plans for their own end-of-life care.

They found that 60 percent of the participants had thought about their wishes for their own advanced care planning, 54 percent had talked about it with family and friends, 21 percent had talked with their physicians, and 10 percent had filled out advance directives.

Analyzing the results further, the authors found that the participants who had discussed advance care planning with family and friends were 12 times more likely to subsequently have discussed it with their physicians and four times more likely to have filled out an advance directive than those who had not.

Round-Up: Physicians Handling End-of-Life, Caregiving Talks, Photo Essays, Scholarships and Awards

I have so much crowding my inbox this will be a big list:

• Most weeks the New York Times Health Section features cases from different doctors. This one from Dr. Jessica L. Israel, chief of geriatrics and palliative medicine at Monmouth Medical Center, urges doctors to slow down to contemplate the moment, whether its to witness a patient's death, or to receive a patient's appreciation.
  

  It’s Monday morning and I meet my new medical student, Nelson, on the hospice unit. I am there to sign a death certificate for a man who died the night before. Nelson is flipping through the patient’s chart, and he asks me, “What are we going to do for this patient today?”
  
  I wonder if he’s kidding, and I say: “Nothing. He’s dead.” Later, recalling this conversation, I still cannot believe I said it so matter-of-factly.
  
  Nelson is still holding the chart and I think I see his hands shake.
  
  “Hey, are you O.K.?” I ask. “You do know what you signed up for, don’t you? It is a palliative-care and hospice elective. People are going to die every day.”
  
  “I know, I know,” he says. “I’ve just never been near anyone who has died before.” Then he says, “Wow, it’s really a big deal.” And he sits down — because he needs to, I think; he needs to respect the moment.
  
  In this moment I learn something from Nelson, a lesson I thought I already knew. I learn to slow down, to feel the gravity of the moment, the power of time and the depth of this important work. Nelson is right. It is a big deal.

• On a similar vein, the Washington Post and Newsweek's On Faith column featured an essay from Ismael Gama, Associate Vice President of Spiritual Care and Mission Integration for Adventist HealthCare. Gama speaks about the need of all members of a health care team to understand the whole patient.
  

  In the 1920s, Anton Boisen, a pioneer in hospital chaplaincy and CPE [clinical pastoral education] , was the first to coin the term living human document in reference to the understanding of a patient’s theological needs. The living human document has since evolved to become a catch-all term in regards to understanding the theological, psychological and social needs of patients.
  
  . . .
  
  Our ability to apply this knowledge in health care, however, is largely dependent on our ability to get to the heart of an individual’s story. While CPE students are already engaged in this discussion as part of their training, we need to engage all members of the health care team in this dialogue because there are lessons in the living human document that can improve the delivery of quality, compassionate care.

• Another New York Times article that got us talking is this one about the rise in medical procedures being performed on the very old, in this case a pacemaker and defibrillator implanted in a 99 year old woman.
  

  Dr. David Goodman, a co-author of the Dartmouth Atlas of Health Care, which has studied the last two years of life, said there is much research suggesting that most aggressive treatment of late-stage chronic diseases does not actually prolong life and can actually decrease its quality. Of Mrs. Homer, Dr. Goodman said, “the odds are that she’s really an amazing exception.”
  
  “The question is not a relatively healthy, smart, sensible 99-year-old getting a life-prolonging procedure, one that prolongs the quality of life,” Dr. Goodman added. “The question becomes the 82-year-old with dementia who has cancer or congestive heart failure.”
  
  . . .
  
  But Dr. Tom Perls, founding director of the New England Centenarian Study at Boston University Medical Center, said that people who reach 100 “have demonstrated a survival prowess.”
  
  “It’s much more the case of the older you get, the healthier you’ve been,” Dr. Perls said. “In my experience, when they’re completely cognitively intact, you cannot in any way or form predict their mortality.”

• Look at Philip Toledano’s photo essay, Days With My Father. At 98, his father suffers from dementia and other health problems. Toledano's photographs chronicle his caregiving journey in a powerful way. (Thanks to The Future of Aging Blog for sharing.)

• Listen to Carol Levine on NPR's Fresh Air radio program. Levine, a home healthcare advocate, cared for her husband for 17 years, who was seriously injured in a car accident in 1990, until he died in 2007. Levine also served on the panel for HFA's 2001 teleconference on Caregiving and Loss.

• Watch this interview of Linda Edmondson, co-chair of the Attorney General's Task Force to Improve End of Life Care in Oklahoma and a member of the Governor's Hospice Advisory Board.

• View the winners of the National Family Caregiving Awards, sponsored by the National Alliance for Caregiving with support from MetLife Foundation.

• There's a caregiving scholarship available through the Rosalynn Carter Institute for Caregiving. The Mattie J. T. Stepanek Caregiving Scholarship provides financial assistance to family, professional, or paraprofessional caregivers of any age who are seeking training or education in specific skills, procedures and strategies that lead to more effective care at the same time that they serve to protect the health and well-being of the caregiver. Four $2,000 scholarships will be awarded. Deadline for application is September 15, 2008.

Media Coverage of Hastened Death Provokes Discussion

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

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

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

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

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

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

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

England's National Health Service Announces New End of Life Care Strategy

The National Health Service (NHS) in England announced a 300 million pound investment in end-of-life care on Wednesday, aimed at allowing more people to choose to die at home.

Currently, most of the 500,000 people who die each year in England do so in a hospital, despite surveys that show two-thirds would prefer to die at home with their families. There was extensive coverage of the new program in the British media, a sampling:

• Here are brief reports of the announcement from Reuters UK and OnMedica.


• The TimesOnline featured several articles and commentary. This article lists the key facts of the initiative. Here is a commentary that questions the desirability of dying at home. This commentary praises hospice, but worries whether the NHS can live up to the promises of the program. This writer suggest that the English discuss death more openly, in order to celebrate life.


• The BBC reported that Health Secretary Alan Johnson wants to start a national debate to get people talking about death.
  

  The strategy suggested a number of ways to encourage that, including getting funeral directors to hold open days and schools to start discussing it with pupils.
  
  Paul Cann, from Help the Aged, said: "For far too long, there has been a presumption that death should be at the convenience of the system, as opposed to respecting the individual wishes of those who are approaching their final days."
  
  But he added the challenge now was to turn "fine words into action".
  
  And shadow health minister Stephen O'Brien said the government had ignored the "wonderful contribution" made by hospices.

  
  

PBS Examines End-of-Life Discussions with Oncologists

Last month we posted a study that was reported at the American Society of Clinical Oncologists showing only one-third of cancer patients recalled discussing the end of life with their oncologist. Last week PBS' NewsHour with Jim Lehrer interviewed a cancer patient and physicians about why having these discussions can be so difficult for doctors.

Near the end of the segment, a patient whose doctor was not comfortable having this type of conversation explained why to the patient's palliative care doctor.

DR. DIANE MEIER: When I asked him about her treatment options and the pros and cons of the different treatment options, one of the treatments that he had suggested to her when I asked him about it, he said he didn't really think it would help her.

And I said, "You know, do we still want to offer her something that isn't really going to help her and might carry consequences or side effects?" And he said, "I don't want Judy to think I'm giving up on her."

And I thought that captured it perfectly, that here was a physician who cared so deeply about his patient that he wanted to convey to her his commitment to her, that he was not going to abandon her no matter what. The way he thought he had to do that was by offering treatments, regardless of how likely they were to benefit, in a way.

In addition, Dr. Barron Lerner, a professor of medicine and public health at Columbia University Medical Center in New York, describes why doctors can have difficulty in shifting the focus from treatment of the disease to provide palliation.

DR. BARRON LERNER: They feel that it's almost wrong to have that sort of discussion, that giving up is equivalent to doing something bad. And we're really not giving up here.

We're just shifting from aggressive treatment to try to kill sick cancer cells to aggressive palliation, where we're going to do as much as we can to prolong life for as long as possible and to keep the person as comfortable as possible.

Hospital Ethics Teams Raise Concerns

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

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

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

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

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

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

Swedish Study Shows Many are Not Told Spouse is Dying

From TIME Magazine, a Swedish study of nearly 700 men whose wives died from breast, ovarian, or colon cancer in 2000 or 2001 showed 40% were not told their wife's cancer was incurable, or were only told just before death. Eighty-five percent of study participants thought spouses should be told immediately. The research was conducted at the Karolinska Institute in Stockholm and appears in this month's Journal of Clinical Oncology.

The findings . . .suggest doctors need to do a better job at communicating the exact nature of an illness. Physicians are, after all, largely responsible for informing families when their loved one is facing a fatal disease — of those widowers who were told that their wife's cancer was incurable, 79% received the news from the doctor. Still, patients and families do control at least some of the information flow, Dahlstrand says. "Sometimes a spouse can block out what the doctor is trying to tell them," she says. "So, the doctor must be as straightforward and unambiguous as possible."

At the same time, patients must be clear with their health providers about how much information they wish to have and with whom they wish to share it. Previous studies have shown that patients often have an easier time dealing with a terminal diagnosis when accompanied by their families, but doctors in the United States, for example, are prevented by medical privacy laws from revealing health information without a patient's consent. Plus, not all families want all the information: the Swedish study showed that 15% of participants did not wish to know that their wife was near death.

The new study is part of a larger inquiry into how people prepare for the nearing death of a spouse. Very little research has been done on how communication before death affects a widow or widower's physical and mental well-being after their spouse is gone. One study, published last spring in the journal Death Studies, found that knowing ahead of time that a spouse is fatally ill may give the surviving partner an opportunity for closure and may prevent extreme depression later on. The paper warns that while most mourners eventually recover from the loss of a loved one, about 20% will face chronic emotional difficulties. Having a chance to say goodbye can mitigate those future problems. "It was less about how much was said, as long as you had the chance to say what you wanted to say," says lead author Patricia Metzger, a graduate student in psychology at the University of Wyoming. "People want that time to remind their spouse how much they love them."

New York MOLST Forms Go Statewide

The Rochester Democrat and Chronicle reports that New York has passed a law to make its MOLST (Medical Orders for Life-Sustaining Treatment) form permanent and statewide. The form is very similar to POLST forms being used in other states, such as Oregon. The form requires a physician's signature, and "allows people to indicate whether they would want IV fluids, medications such as antibiotics, a feeding tube, a breathing tube or other interventions, and whether they want to go to a hospital. They can also specify whether they want only comfort measures or even certain treatment for a trial period."

Prior to the passage of this new law, the MOLST form had been used in nursing homes statewide since 2005, as well as in homes in Monroe and Onondaga counties.

Also see this review of state legal barriers to implementing POLST orders, that appeared in the March 2008 Journal of Law, Medicine & Ethics. Available from the Oregon Health & Science University (OHSU) website, the research was conducted between October 2005 and May 2006.

Hospice Social Worker Addresses Ethical Questions

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

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

Round-Up: Awards, New Caregiving Advice Column, MedPAC report and more

This week's collection of articles, posts, and items of interest from around the web:

• The Jefferson Awards, honoring contributions through public and community service , announced its 2008 winners, including the founder of a hospice in rural Mississippi.


• The Rosalynn Carter Institute for Caregiving is now taking nominations until August 15 for its 2008 Leadership in Caregiving Award.


• Judy Bachrach, journalist and contributing editor at Vanity Fair, had launched a new website on online advice column on dying well


• The Medicare Payment Advisory Commission (MedPAC), an independent Congressional agency, has released its June 2008 Report to Congress. There is a lot of information about the Medicare hospice benefit in the report. HFA will share highlights in a future post.

Increased Coverage of End-of-Life Discussion Study

Last month we shared a Chicago Tribune article about a study funded by the National Cancer Institute and the National Institute of Mental Health on whether physicians discuss end-of-life issues with patients dying of cancer. The study was presented at the annual meeting of the American Society of Clinical Oncology and showed just over a third of patients could recall having discussed end-of-life issues with their doctor.

That study is getting increased media attention this week due to the passage a bill by the California Assembly that requires health care providers to give dying patients complete answers about their end-of-life options. The bill still must pass the in the state Senate.

This AP article appearing on MSNBC includes several doctors' reaction to the study. An LA Chronicle article from Saturday also highlights the groups that support and oppose the bill. Compassion & Choices, which supports the bill, points out that a group opposing the bill, the Northern California Oncologists, appear to be in contradiction with the study, as well as the result of another study regarding the use of chemotherapy at the end-of-life (which we posted last Friday.)

Review of State Legal Barriers to Using POLST orders

Researchers examined legal barriers to implementing POLST (Physician Orders for Life-Sustaining Treatment) forms in states other than Oregon, West Virgina, and Washington. The POLST form helps translate a patient’s wishes for life-sustaining treatment into clear medical directions for health care workers. While it is generally recommended that everyone have some form of advance directive, such as a living will or health care proxy, the POLST form was developed specifically for patients who already have a serious illness.

This legal review appeared in the March 2008 Journal of Law, Medicine & Ethics and is available from the Oregon Health & Science University (OHSU) website. The research was conducted between October 2005 and May 2006. At that time parts of Wisconsin, Pennsylvania, and New York were also using a type of POLST form. Additionally, Hawaii, Idaho, North Carolina, and Tennessee began using POLST-type orders after research concluded in December 2006.

See the OHSU website for more information about individual state coverage.

Last week the California Senate Health Committee voted to approve a bill which will allow patients whose life expectancy is less than one year to utilize a POLST form.

Chemotherapy Guidance at the End-of-Life

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

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

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


• People in hospice not receiving chemotherapy live longer


• Chemotherapy prevents patients from going into hospice


• One in three families is bankrupted by serious illness


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

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

• A lack of honest information about prognosis


• Hype from drug companies and national research organizations


• People not believing their doctors or having a different perspective


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


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

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

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

• More honest communication from the beginning with patients


• Bring up hospice


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

Also see coverage of the research from USAToday and Pallimed.

Round-Up: Risk-of-Death Charts, Violent Death Rates, Obit Magazine and More

A collection of articles, posts, and websites from around the web this week.

• The Journal of the National Cancer Institute, published risk-of-death charts, offering the public way a simpler was to view health threats. The charts stress the three factors that most influence mortality, the person's age, gender, and smoking status. Read the news coverage from WebMD and the Associated Press.


• The New York Times reports on the high rate of suicides among violent death statistics. Over half of all violent deaths are the result of suicide, from 2005 data.


• An op-ed appearing in The Wall Street Journal by the Abigail Alliance for Better Access to Developmental Drugs, urges the Senate to pass a bill that would allow terminally ill patients access to experimental drug treatments.


• An article from The New York Times discusses the role of geriatric care managers.


• And last, Obit Magazine, which describes itself as a magazine that explores death as an integral part of life.

More on Hospitals Handling of Early Infant Death

Last month we posted an article about how two hospitals handle early infant death in Berks County, Pennsylvania. Earlier this week, Tampa Bay Online published two articles about a bereavement program, Cherished Moments, at Brandon Regional Hospital in Florida. One article discusses the program, which includes photographing the baby, and creating a box for mementos. The other article profiles the nurse, Laurie Van Damme, who began the program.

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

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

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


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


• no more likely to meet criteria for depression.


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

Heart Failure Patients Overestimate Their Life Expectancy

Researchers from Duke University Medical Center note that many heart failure patients overestimate their life expectancy, reports ScienceDaily. This is important because it can effect their decisions regarding treatment options.

The research showed that among 122 patients with heart failure enrolled in the Duke University Heart Failure Disease Management Program, the patients, on average, believed the would live about 40 percent longer than what accepted survival models predicted.

While the reasons underlying the phenomenon aren't clear, scientists say the finding may hold important implications about options such as high-end medical devices, transplantation or palliative care -- important decisions that have enormous impact on patients' quality of life and clinical outcomes.

Providing Spiritual Support to the Dying

This Sacramento Bee article discusses an end-of-life seminar attended by more than 50 local faith leaders.

Hospice College of America (a distance-learning subsidiary of HFA) offers an online course, Engaging Faith Communities in End-of-Life Care. The course is for clergy and faith leaders designed to enhance understanding of issues related to end of life care, and to provide techniques to help clergy and lay leaders to assist members of their congregations who are facing an end-of-life medical crisis. This course was developed by Hospice Foundation of America in cooperation with the Florida Department of Elder Affairs and The Center on Aging at Florida International University.

Black Cancer Patients Choose More Aggressive End-of-Life Care

Today, at the annual meeting of the American Society of Clinical Oncology in Chicago, researchers from the Dana-Farber Cancer Institute in Boston will report on findings showing black patients with advanced cancer were more likely than whites to die in a hospital intensive care unit. Researchers surmise this shows a greater preference for life-extending treatment even at the end-of-life.

"This is the first study focused on black/white differences that prospectively asked [terminal cancer patients] what kind of care they wanted at the end of life, and then documented the kind of care they actually received and the place of their death," said Elizabeth Trice, MD, PhD, of Dana-Farber, lead author.

Although they ruled out a number of possible explanations for the black/white differences, the investigators weren't able to identify precisely why blacks tended to prefer more-aggressive care.

"There is something different about the way black patients and white patients approach the end of life," Trice said, which may be based in cultural attitudes, religious beliefs, and how thoroughly they have been informed about and comprehend their prognosis, among other things.

Data on the preferences was obtained from the Coping with Cancer study led by Holly Prigerson, PhD, director of the Center for Psycho-social Oncology and Palliative Care Research at Dana-Farber and an associate professor of psychiatry at Harvard Medical School. That study is recruiting 800 cancer patients and their informal caregivers, such as family members.

The researchers recorded the location of death for 231 white and 61 black patients who had stage IV metastatic cancer, and who had been interviewed when they entered the study. Black patients were over four times more likely to die in a hospital ICU than white patients, they found.

Report on UK Pilot Program to Improve End of Life Care

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

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

. . .

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

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


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


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


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


• appropriate places for 'viewing' the deceased.

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

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

Addressing End-of-Life Issues in African-American Families

A Kansas City radio station recently spoke to Kansas City Hospice President Elaine McIntosh and social worker Gloria Thomas Anderson about end-of-life issues in different cultures. Anderson has written a booklet addressing these issues in the African American community. To listen to the interview, click the "Listen" button under the headline of this page.

“I hope the information in this booklet empowers African Americans to make the best health care decisions before they are unable to communicate what they want for themselves,” said Anderson, who was inspired by her own family’s experiences. “I want African Americans to know that end-of-life care isn’t about giving up. It’s about quality of life.”

HFA's 2009 teleconference will focus on ways of understanding the impact of cultural diversity at the end of life. We will post more information about the topic as it becomes available.

How Hospitals Handle Early Infant Death

A recent article from my local newspaper, the Reading Eagle (PA), discusses how two area hospitals help families whose babies die at birth. One hospital hangs a yellow rose on the mother's door, so all hospital staff know the family has lost a baby. They allow parents to spend as much time as they want with their child.

Berks County’s two hospitals — Reading Hospital and St. Joseph Medical Center — have support systems in place that help families cope with infant death.

As part of that effort, hospital staff puts together memorial boxes for families. Those boxes include photographs, locks of hair, knitted clothing and small shells used to baptize the babies.

"We want to create as many memories as we can," said Lori Meredith, a nurse in the neonatal intensive care unit at Reading Hospital. "It is a lot of memories to create in a short amount of time."

Physicians Discussing End-of-Life

The Chicago Tribune's Triage blog featured an interview last week with Dr. Martha Twaddle, chief medical officer of the Midwest Palliative & Hospice CareCenter, in response to new research showing that physicians do not discuss end-of-life issues with patients dying of cancer. Researchers followed 603 people with end-stage cancer, looking at the medical care they received and asking patients about conversations with their doctors.

Q. The researchers talk here of end-of-life discussions. What does that involve?

A. The doctor will say: ‘We don’t have anything left to treat the disease. So we need to talk about what you goals are and what is meaningful support for you and your family.’

Q. What happens instead when these discussions don’t occur?

A. The conversations revolve around the tasks at hand instead of the big picture. The doctor will say the results of your last scan showed this. The therapeutic interventions available to you are these. I think we should begin with such and such treatment or wait and see what the next scan shows and make a decision. It’s always about the next procedure or test. The focus is on the minutia as opposed to the person and their experience of the disease and what are the most likely outcomes.

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.

Advice for Oncologists Discussing Death with Patients

Pallimed, a hospice and palliative medicine blog, discusses a recent Journal of Clinical Oncology article that addresses how oncologists should discuss death with their patients. The article encourages physicians to use clear language about death and dying with patients, rather than using familiar euphemisms. Drew Rosielle, the founder of the blog and a palliative care doctor, discusses his take on the article here.

Oregon's POLST Orders Are Going Electronic

Oregon, the state that pioneered the POLST order ("Physician Order for Life Sustaining Treatment"), annouced that they are building an electronic registry of the orders that will be available in 2009. The registry is completely voluntary and will allow paramedics and other emergency workers to call a central hotline to find out if a patient has a POLST order. A survey by the Oregon Health & Science University found that paramedics were not always able to find a patients POLST order during a medical emergency.

The Hospice and Caregiving Blog has previously posted 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

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

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

Schools Debate Honoring Parents Wishes at the End-of-Life

A December 9 Chicago Tribune article discussed the role public schools play in honoring end-of-life decisions for children in their care. Some parents, who have struggled through a child's life-threatening illness for years, have made the difficult decision of establishing a Do Not Resuscitate (DNR) order for their child. However, end-of-life decisions are not the province of the family alone, as this article illustrates.

While hospitals have experience with DNRs, schools are treading on new territory. Some schools may have a policy of ignoring such orders; in others, confusion may exist over what actions the order allows, according to reporter Jeff Long's article. Long's report indicates that end-of-life questions and debates are arising in areas where they were never discussed before.

Documentary Airing on Bio Channel Addresses End-Of-Life

The documentary "Six Months", which premiered on the Bio channel on Dec. 5 and is continuing to air, follows two people as they deal with their terminal illnesses. The Chicago Tribune's blog review of the show has received many responses to its headline question: Six Months to Live: What Would You Do?

Why Talking About End-of-Life Issues Is So Difficult, And So Important

Patricia Wen of The Boston Globe writes of the difficulty of discussing end-of-life matters with family members. She tells the struggle of one daughter to openly talk about signing a 'Do Not Resuscitate' (DNR) order with her terminally ill mother. Wen reports that both physicians and a patient's relatives delay in making decisions about DNR orders.

Massachusetts is considering introducing the POLST form ("Physician Order for Life Sustaining Treatment") which is being used by other states already.

Health and Human Services Makes Report on Advance Directives Available Online

The U.S. Department of Health and Human Services recently posted a June 2007 report online, “Literature Review on Advance Directives.” Conducted by the RAND Corporation, the report examines medical literature on the use of advance directives, whether they have met their intended goals, and what can be done to enhance the use and value of advance directives and advance care planning. The report also reviews past efforts to promote advance directives, including the national Last Acts campaign (funded by the Robert Wood Johnson Foundation) which ended in 2005 and other state-specific programs.

The conclusions of the report are not encouraging. The reports states, “. . . evidence suggests that end-of-life decision making in the United States is often poorly implemented with patients receiving care inconsistent with preferences toward the end of life, a poor match of aggressive care with prognosis, undue suffering, and wasted resources.” Advance directives are not helping improve patient care the way they were intended, but they offer hope that there is promise if we continue to investigate and learn from the most successful models of advance care planning.

The report may also be downloaded as a PDF file.

Study to Look at End-Of-Life Decisions Made by Rural African-Americans

Cathy Campbell, an assistant professor at the University of Virginia's School of Nursing, is conducting a study into how African-Americans in rural Virginia make end-of-life decisions. One goal of the study is to develop support mechanisms for these families. Professor Campbell is looking for more participants.

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

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

States Looking Into Developing New End-Of-Life Directives

Recent studies have shown that the use of the POLST form ("Physician Order for Life Sustaining Treatment") in Oregon has had dramatic results in end-of-life interventions. The POLST form differs from a health care proxy in that it spells out clear medical directions. Fifteen other states use similar types of forms, and other states, including Massachusetts and California, are looking into how to bring these types of forms into their health care systems.

Maine Attorney General Discusses End-of-Life Care

Steve Rowe, Maine's Attorney General, sat on a panel for a town hall meeting on end-of-life care held on October 25, 2007 at Miles Memorial Hospital in Maine. The panel included hospice administrators and a bereavement counselor, as well as physicians. In 2004, a conference was held for healthcare professionals, but this meeting was formed to learn how different communities in Maine deal with hospice and end-of-life care. The information gathered at October's meeting, along with a future meeting to be held in Portland, will be used in considering legislative initiatives for the state.

New Publication Focuses on Issues of Ethics and Pain Managment

The issue of pain management at the end of life is an ongoing concern for professionals and families. While hospice professionals offer special skills in this field, many health care professionals have not received proper training or have a comprehensive understanding of the critical importance of pain management in end-of-life care.

The Center for Practical Bioethics' most recent publication (PDF) looks at Bioethics and Pain Management, and includes articles from Dr. Richard Payne of the Institute on Care at the End of Life at Duke University and Betty Ferrell, City of Hope Medical Center.

PBS Program Takes a Behind-the-Scenes Look at a Funeral Home

FRONTLINE's The Undertaking, to be broadcast October 30 on PBS, enters the world of Thomas Lynch, a writer, poet and undertaker whose family for three generations has cared for both the living and the dead in a small Michigan town. Check here for local listings.

The role of hospice is discussed in the series, including the pediatric hospice program at Angela Hospice Care Center in Livonia, MI.

Spiritual Care Coordinators Attend Hospice Patients

This October 28, 2007 in-depth article in The Journal News (NY) follows Mary Wasacz, one of two spirtual care coordinators for Hospice & Palliative Care of Westchester, New York. The hospice usually cares for between 80 and 100 patients, and more than half request spiritual care.

Tutu Discusses Differences In Death and Dying Rituals

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

(www.fhssa.org)

Ohio Marks Living Wills and Advance Directives Week, Oct. 14-20

Ohio Gov. Ted Strickland has declared October 14-20 to be Living Wills and Advance Directives Week. This article describes the various documents that can be useful when making end-of-life decisions, as well as how people can have their wishes honored when they can no longer make those decisions for themselves.

While the article focuses on completing documents in Ohio, the Hospice Foundation of America has some general information about Advance Directives.

The Controversy Over Medical Futility Laws in Texas

The New England Journal of Medicine July 2007 issue included an article by Robert D. Truog, M.D., addressing the ethics behind the Texas Advance Directives Act. This act allows hospitals to withdraw life support if an ethics committee has determined that life support is medically inappropriate, as long as the hospital gives 10-day notice to the family and attempts to find an alternate provider. The article addresses some of the ethical considerations that go into making such a determination. An October 11, 2007 Letter to the Editor in the Journal by Robert L. Fine, M.D., a physician and clinical ethicist who was involved in the development and use of the Act, attempts to refine some of Truog arguments and argues for the support the Texas act, stating that, ". . .the Texas process remains the best approach when family requests conflict with professional obligations at the end of life."

Perinatal Hospice Programs Offers Assistance for Families Experiencing the Earliest Loss

This article in The Des Moines Register discusses the Perinatal Hospice Programs at a local hospital. The program is "for patients who have been given a nonviable diagnosis or a life-threatening diagnosis for an unborn child." A March 2007 Health article from The New York Times provides an excellent description of perinatal hospice and its history.

Tension Exists Between Physicians and Patients, Particularly at the End of Life

This Boston Globe article addresses the tensions that can develop between physicians, their patients, and their patients' families. These conflicts can be especially daunting when treating a patient with a serious illness or at the end-of-life. The article points to a growing conflict as the nature of the doctor-patient relationship evolves.

Samira K. Beckwith, LCSW, CHE, looks at these conflicts (PDF), as well as familial disagreements in general, for HFA's book, Living With Grief: Ethical Dilemmas and End-of-Life Care. She also discusses the role of hospice in resolving these conflicts.

A Family Practice Physician in Maine Discusses the Emotional Impact of Caring for Patients at the End-of-Life

An October 3, 2007 article in The Lincoln County News examines the impact of providing end-of-life care on physicians. Dr. Chip Teel, discusses how he and his patients navigate this phase of life. Teel states, “It is an enormous privilege to be a part of someone’s end of life."

World Health Organization Issues First-Ever Guide to End-of-Life Care

This week, the World Health Organization released a document aimed at national health ministers. The guide contains formulas for calculating how many people in a country are in need of such care, and outlines typical obstacles to providing it: national laws that make it hard for pharmacists to stock powerful painkillers, lack of training for doctors and nurses, and fears of addiction on the part of patients. It also cites countries that offer good end-of-life care despite national poverty, notably in Uganda and in the state of Kerala in India.

A Professor's Final Lecture to His Students and Beyond

Carnegie Mellon professor Randy Pausch's final lecture to his students has been widely reported on. Pausch is suffering from pancreatic cancer and has a few months to live. His words have inspired not only the students he teaches, but a much larger audience on the importance of living your life to the fullest each day.

HFA's A Guide to Recalling and Telling Your Life Story is a beautiful, award winning workbook designed to help a person tell his or her life story. Page by page, it suggests topics--such as Family, Adult Life, Growing Older, and Reflections--and questions to reflect upon. The questions can be helpful to the person sharing the memories, as well as provide other family members with a way to elicit stories and experiences.

New Law in North Carolina Gives Patients More Control in End-of-Life Decisions

The new law, which took effect Oct. 1, allows patients to state whether they want medical treatment withdrawn at the end-of-life. There is debate about the law. Supporters argue it is easier for patient to convey their wishes, while opponents say the law is slanted towards withholiding treatment.

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

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

Hospice Patient Shares His Outlook on Care

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

Spirituality in Medical Curriculum

Along with memorizing body parts and learning to diagnose and treat diseases, students in the School of Medicine and Biomedical Sciences are being introduced this fall to a new set of courses incorporating spirituality into their training to become physicians. Fourth year students can select a popular elective, "Faith, Medicine, and End-of-Life Care."

Clergy and faith leaders can also enhance their understanding of issues related to end-of- life care. Hospice College of America offers an online course developed by the Hospice Foundation of America in cooperation with the Florida Department of Elder Affairs and The Center on Aging at Florida International University. Engaging Faith Communities in End-Of-Life Care.

Home Funerals: A New Option for Honoring Your Loved One

MSNBC reports a new trend in funeral care: keeping it at home. "A home funeral can encompass a memorial service, wake, viewing or a combination of the three. It's also an intimate experience: Friends or family members might help wash and dress the body, build or decorate a casket, plan a memorial service or accompany the deceased to the burial site or crematory."

In all but a few states, at-home ceremonies can be conducted with little regulatory interference. While not appropriate for some deaths—disfigurement, sudden loss, or when some family members are uncomfortable with the idea—participants oftentimes report that they more readily accept the finality of the loss, as well as feeling more "in control," of the death.

The Importance of Volunteers in Hospice and Palliative Care

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

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

Memory Bears Help Families Remember Their Loved Ones

Hospices around the country have found that creating a memory object can be very beneficial to a bereaved family. Participants in HFA's 2007 teleconference, Living With Grief: Before and After the Death, learned about Memory Bears—teddy bears sewn by VITAS hospice volunteers using a piece of clothing or other material from a loved one who has died. The video clip above is of a hospice volunteer who makes the bears for bereaved families.

Other hospices have made Memory Quilts to remember loved ones. Harry Hynes Memorial Hospice in Wichita, Kansas created a beautiful woven tapestry to memorialize lost loved ones. The tapestry won HFA's Call for Artwork contest for the cover of its 2007 Living With Grief book. The contest is now underway for the 2008 book cover, Living With Grief: Children and Adolescents.

The Role of Hospice for Patients and Families

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

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

Published September 24, 2007.

The Physician's Role at the End-Of-Life

American Medical News published an article about the physician role in offering comfort to a terminally ill patient. The article discusses a variety of studies that have shown that greater communication by physician can help patients dealing with a terminal illness and help families through bereavement. Doctors who remain more distant can leave families feeling abandoned.

Learn more about the role of caregivers in preparing for the end-of-life from HFA's 2007 Teleconference, Living With Grief: Before and After the Death.

Published September 3, 2007