End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Archive for May, 2012

Five Tips for Families Facing End-of-Life Care

By Alexandra Sifferlin
May 31, 2012

In this week’s TIME cover story, “The Long Goodbye” (available to subscribers here), journalist Joe Klein writes about the loss of his parents. They both suffered from dementia and died within months of each other. Through their end of life, Klein became his parents’ death panel.

For the many other families facing the same journey, experts’ best advice is to prepare early. As with most difficult transitions, caring for a parent or loved at the end of life is easier if you’ve planned for it. Trying to make the best possible decisions about care often leads to added stress and confusion, especially if your family is already in a difficult situation. “It’s all pre-planning really,” says Malene Smith Davis, CEO of Capital Caring, which provides palliative care and guidance for families. “People really do cope well if they have a conversation about care with their families early. When families don’t have the conversation, that’s when there’s turmoil because no one is prepared and it’s inevitable.”

Here are some tips for making end-of-life care easier to handle:

Keep communication open. Have “the conversation” early. Make sure family members designate who they want as their health care agent if they cannot make medical decisions on their own and need someone to speak on their behalf. “The last place you want to have a conversation about who will take over as a health care agent is in an emergency,” says Paul Malley, president of Aging With Dignity, a Florida-based advocacy group for terminally ill patients. “This can be the adult child or the parent’s best friend perhaps. There needs to be a conversation about everything from what medical treatments the loved one wants to how they feel about life support. The fewer surprises the better.”

Malley recommends opening the conversation to the entire family. “So often when parents are older or have a serious diagnosis, we put them in the hot seat and say, ‘O.K., Mom and Dad, here are a list of questions you need to answer.’ Instead, bring the whole family together. Even college kids can tell their families what they want in an emergency. That way the whole family can think back and remember everyone’s wishes,” he says.

Involve your doctor. “I think it’s really important that when these medical decisions are made, the family and the doctor are present,” says Carol Levine, director of the Families and Healthcare Project at United Hospital Fund. “Not all doctors are comfortable talking about end-of-life kinds of issues.” Involving the doctor in conversations about emergency care can alleviate tension when treatment options are discussed.

Get it in writing. “It’s not enough to just have a conversation once and not talk about it again and it’s also not enough to fill out legal documents and never discuss wishes with family members,” says Malley. “Both need to be done.”

Aging with Dignity has created “Five Wishes,” a living will that is legal in 42 states and has been translated in 26 languages. The document allows families to let care providers know who they want to make health-care decisions, what medical treatments they want or don’t want, and what they want loved ones to know.

Here are some other documents the National Institute on Aging recommends for everyone:

  • Living Will: records a person’s wishes for medical treatment near the end of life
  • Durable Power of Attorney for Health Care: designates a person, sometimes called an agent or proxy, to make health care decisions when the person can no longer do so
  • Do Not Resuscitate (DNR) Order: instructs health care professionals not to perform cardiopulmonary resuscitation if a person’s heart stops or if he or she stops breathing. A DNR order is signed by a doctor and put in a person’s medical chart
  • Will: indicates how a person’s assets and estate will be distributed upon death
  • Durable Power of Attorney for Finances: names someone to make financial decisions when the person no longer can. It can help terminally ill people and their families avoid court actions that may take away control of financial affairs
  • Living Trust: provides instructions about the person’s estate and appoints someone, often referred to as the trustee, to hold the title to property and funds for the beneficiaries. The trustee follows these instructions after the person can no longer manage his or her affairs

Another document to consider, is a Physician Orders for Life-Sustaining Treatment (POLST) form. It details what the patient wants in terms of medical treatment including CPR, feeding tubes and medical interventions if the patient is not breathing or is without a pulse. The form is signed by both the physician and health proxy. Not every state has a POLST program, but here are some samples.

“Doctors feel compelled to treat, no matter what, most of the time,” says Carolyn Rosenblatt, founder of AgingParents.com, a resource for people caring for aging loved ones. ”They are also afraid of getting sued for ‘hastening death.’ The form protects them by giving them immunity. One would hope that they could then go about decision making with more common sense.”

Recognize that you might not be the best person to take over. “The person who becomes the health care proxy needs to be comfortable with that,” says Levine. “Being that person means making very hard decisions at a certain point. It is better to know if you can handle it ahead of time so someone else can take on the role if need be.” Experts recommend siblings also talk to one another early about how to divide responsibilities to avoid conflict later.

Talk about hospice care early. Hospice care provides medical treatment, emotional support and spiritual resources for people who are in the last stages of a terminal illness. “I often see people who get into hospice care and wonder why they didn’t hear about it sooner,” says Davis. In many cases, that may be because people see hospice as “giving up” — though, actually, people who receive palliative care at the end of life may live longer than those who continue with aggressive, life-saving interventions. Also, hospice can be a difficult topic for doctors to bring up to their patients.

Davis recommends talking about hospice care with your family early, in order have care for the longest time possible. Hospice is a Medicare program and many state Medicaid plans and private health insurance plans pay for it as well. “Talk about it early because although we all see ourselves dying in old age, it’s healthier to bring it up just in case. That way, it can be about your own personal wishes as well as the wishes of your loved one,” says Davis.

Discovered: The Magic Word

By Paula Span
The New York Times
May 30, 2012

The word “hospice” usually evokes a shift, a pivot from trying to cure to providing comfort and support at the end of life. Hospice workers help people through the final weeks and months of terminal illness, easing dying people’s pain and fear, bolstering their exhausted families.

But in one case I heard about recently, the word served a different function: It became a kind of magic shield. Simply saying it could protect against unwanted medical treatments for a vulnerable old woman who possibly wasn’t dying at all.

Dr. Sei Lee, a geriatrician and palliative care specialist at the University of California, San Francisco, who told me the story, described this use of hospice as “an amulet to ward off overly aggressive care.” He put that potent word to use a few weeks ago; the woman in question was his mother.

Sarah Kyung Lee, 76, lives in a small board-and-care home in Foster City, Calif. A tiny woman, she was out for a walk in March when she was grazed by an S.U.V. whose driver, backing up, evidently didn’t see her. “It was by all accounts, including the police report, a very low-velocity collision,” Dr. Lee said. It didn’t even dent her walker. “But it was enough that she fell and hit her head on the sidewalk.”

She was admitted to Stanford Hospital. At first, “I was hopeful she could go home in two or three days,” Dr. Lee said. Though E.R. doctors saw evidence of bleeding in the brain, subsequent scans showed it had stopped.

Hospitalizations rarely go so smoothly for older people with multiple health problems, however. Mrs. Lee had undergone two heart valve replacements and was on a blood thinner. She’d suffered two strokes and had high blood pressure. The stress of the accident kicked off an episode of recurrent atrial fibrillation, sending her heart rate to dangerous speeds. She developed delirium, as many hospitalized older people do.

Placed in a transitional care unit, “she had all these lines to monitor her heart, IVs in case they had to give her additional meds,” Dr. Lee recalled. Aides interrupted her sleep for blood tests before dawn. Fearful that she might fall if she tried to get up to use the bathroom, doctors inserted a urinary catheter.

Let me point out that if you’re a confused, hospitalized 76-year-old, the advocate you want at your bedside is Dr. Lee, author of numerous research articles on caring for frail, elderly patients. He had the expertise to know that atrial fibrillation could reverse itself. “We wanted to give my mother a chance to get better,” he explained. “In a week, there was a good chance she could snap out of this.” But he also knew how hospitals function.

His sister arrived from Oregon. “We were trying as best we could to minimize the interventions that would make our mother uncomfortable,” he said. What he wanted was “high-touch, low-tech care”: people to reorient her in Korean (Mrs. Lee spoke little English), to offer her favorite foods instead of bland mush, to let her sleep. University hospitals don’t tend to operate that way.

“I had to be hyper-vigilant,” he said, describing his conversations with every new doctor and nurse. He feared further procedures and medications. “It was exhausting feeling I had to be constantly on the lookout against the vast machinery of the hospital.”

So Dr. Lee summoned the power of the H-word and asked for hospice care. The palliative care team agreed that this patient had better than 50/50 odds of dying within six months, the prognosis required for enrollment. Yet, “I told the hospice doctors that my best guess was, she’d graduate from hospice,” Dr. Lee said. “These were all problems that with time could get better.”

Once he wielded the amulet, “the change was fairly instantaneous.” And well-timed: The next day, as his mother awaited discharge, nurses noticed flecks of blood when she vomited, which sometimes signals internal bleeding. The normal procedure would have involved a naso-gastric tube (something Dr. Lee had tried on himself as a medical student and found intensely uncomfortable), then sedation and insertion of a second tube through her esophagus, into her small intestine. “But they didn’t do it,” Dr. Lee explained, with relief, “because she was under the care of a hospice.”

Instead, he took his mother home. Over the next four weeks, Pathways Hospice sent nurses, social workers, aides and a chaplain to her residence. Because she wasn’t a typical hospice patient, the Lees still encountered policies that didn’t quite fit her needs; for example, she didn’t need pain medication. Nonetheless, Mrs. Lee recovered her mental clarity, ate and slept better, regained strength.

“Invoking hospice allowed me and my sister to relax and have some confidence that the care she was getting was what she needed,” Dr. Lee said. Mrs. Lee, who was indeed discharged from hospice last month, is doing well.

Each year, more than 15 percent of elderly patients leave hospice care, usually because their health has stabilized, according to a 2008 study; some will return as their decline resumes. Discharge can be nightmarish for a family that’s come to rely on hospice help, but those are the Medicare rules hospices must play by.

Caring for those expected to recover is not what hospices are designed to do, of course. And Dr. Lee’s gambit wouldn’t work for most of us; we lack his knowledge.

But it’s a cautionary tale, if we needed another, of how hospital policies can be at odds with the needs of frail elders. The way to ensure the most personalized, least invasive care for Mrs. Lee was to say, in effect, “We’re taking her home to die.”

What’s wrong with this picture?

When Doctors Grieve

By Leeat Granek
The New York Times
May 25, 2012

My mother died of breast cancer in 2005 after living with the disease for nearly 20 years. Her oncologist, whom I knew from the time I was 9 years old, was her doctor for most of that time. I practically grew up in the hospital, and my family felt quite close to the health care providers, especially the oncologist. After my mother died I wondered if the feeling was mutual.

Do doctors grieve when their patients die? In the medical profession, such grief is seldom discussed — except, perhaps, as an example of the sort of emotion that a skilled doctor avoids feeling. But in a paper published on Tuesday in Archives of Internal Medicine (and in a forthcoming paper in the journal Death Studies), my colleagues and I report what we found in our research about oncologists and patient loss: Not only do doctors experience grief, but the professional taboo on the emotion also has negative consequences for the doctors themselves, as well as for the quality of care they provide.

Our study took place from 2010 to 2011 in three Canadian hospitals. We recruited and interviewed 20 oncologists who varied in age, sex and ethnicity and had a wide range of experience in the field — from a year and a half in practice in the case of oncology fellows to more than 30 years in the case of senior oncologists. Using a qualitative empirical method known as grounded theory, we analyzed the data by systematically coding each interview transcript line by line for themes and then comparing the findings from each interview across all interviews to see which themes stood out most robustly.

We found that oncologists struggled to manage their feelings of grief with the detachment they felt was necessary to do their job. More than half of our participants reported feelings of failure, self-doubt, sadness and powerlessness as part of their grief experience, and a third talked about feelings of guilt, loss of sleep and crying.

Our study indicated that grief in the medical context is considered shameful and unprofessional. Even though participants wrestled with feelings of grief, they hid them from others because showing emotion was considered a sign of weakness. In fact, many remarked that our interview was the first time they had been asked these questions or spoken about these emotions at all.

The impact of all this unacknowledged grief was exactly what we don’t want our doctors to experience: inattentiveness, impatience, irritability, emotional exhaustion and burnout.

Even more distressing, half our participants reported that their discomfort with their grief over patient loss could affect their treatment decisions with subsequent patients — leading them, for instance, to provide more aggressive chemotherapy, to put a patient in a clinical trial, or to recommend further surgery when palliative care might be a better option. One oncologist in our study remarked: “I see an inability sometimes to stop treatment when treatment should be stopped. When treatment’s futile, when it’s clearly futile.” From a policy standpoint, this is an especially worrisome finding, given the disproportionately high percentage of heath care budgets spent on end-of-life care.

Unease with losing patients also affected the doctors’ ability to communicate about end-of-life issues with patients and their families. Half of our participants said they distanced themselves and withdrew from patients as the patients got closer to dying. This meant fewer visits in the hospital, fewer bedside visits and less overall effort directed toward the dying patient.

It’s worth stressing that most physicians want what is best for their patients and that the outcome of any medical intervention is often unknown. It’s also worth noting that oncologists and other physicians who are dealing with end-of-life issues are right to put up some emotional boundaries: no one wants their doctor to be walking around openly grief-stricken.

But our research indicates that grief is having a negative impact on oncologists’ personal lives and that there is a troubling relationship between doctors’ discomfort with death and grief and how patients and their families are treated. Oncologists are not trained to deal with their own grief, and they need to be. In addition to providing such training, we need to normalize death and grief as a natural part of life, especially in medical settings.

To improve the quality of end-of-life care for patients and their families, we also need to improve the quality of life of their physicians, by making space for them to grieve like everyone else.

Massachusetts Debates ‘Death With Dignity’

By Paula Span
The New York Times
May 29, 2012

The memorial service for Michael Southerland recently drew more than 200 people to the Unitarian Society in Northampton, Mass. Friends, neighbors and co-workers offered funny and moving stories.  They sang; they cried. They hugged his wife and daughters.

And they circulated petitions to put a “death with dignity” law on the Massachusetts ballot in November. The forms awaited signatures at the back of the hall, next to the guest book.

Mr. Southerland, a veteran day care teacher and serious runner, had noticed the first symptoms two years earlier. Eventually, doctors diagnosed amyotrophic lateral sclerosis, Lou Gehrig’s disease. He was only 60 when it killed him.

“People suffering from A.L.S. provide a good talking point” for the campaign to pass the law, his widow, Debra Hertz, told me. “A terminal illness, no treatment and no hope, just the certainty of a death pretty much everyone would abhor.”

Mr. Southerland had looked forward to retirement, to grandchildren. “He didn’t want to die,” Ms. Hertz added. But he also declined to prolong his relentlessly constricting life.

“If he could have taken control into his own hands, I believe he would have,” she said. “I know he would have wanted to have the option. But it wasn’t available.”

If the Death With Dignity Act passes, it will be.

November in Massachusetts would be plenty interesting this year even if the only electoral fireworks came from a high-profile Senate race and a presidential election pitting the candidate who carried the state four years ago against the candidate who was once its governor.

The Bay State will attract even greater attention, though, because this question is quite likely to be on the ballot.

Consider this an update. Last fall, when I talked with some of the 350 volunteers circulating petitions, they sounded confident about collecting 70,000 certified signatures by the end of the year. They more than succeeded, which meant the state legislature had until May 1 to act. It didn’t — to no one’s surprise — so volunteers for the organization backing the referendum, Dignity 2012, have headed back out with their clipboards.

If they can gather another 11,000 signatures by July 2, the public will decide whether the state’s physicians can lawfully prescribe medications with which terminally ill patients can end their lives. (You can read the exact language here.)

Oregon enacted essentially the same law allowing self-administration of lethal drugs in 1997, and Washington in 2009. Though their adversaries often used “slippery slope” arguments, the number of residents who have taken advantage of the laws remains quite small. After meeting all the requirements and undergoing the mandated waiting periods, 114 people received lethal prescriptions last year in Oregon and 103 in Washington. In both states, about a third of those who qualified ultimately decided not to use the drugs.

But the controversy was intense in those states, with contentious public debate and expensive media campaigns, and it will be this round, too. In both camps, fund-raising has already begun.

“It has potent national implications,” the Rev. J. Brian Hehir, secretary for health care and social services at the Roman Catholic Archdiocese of Boston, said of the referendum. “We are talking about fundamental human values, deeply personal choices.”

Catholic doctrine doesn’t mandate futile medical treatments or high-tech interventions for the dying, Father Hehir said; it supports hospice and palliative care. But, he said, “We do oppose direct, intentional, purposeful taking of human life, one’s own or others’.” The archdiocese, intent on defeating the referendum, plans to join forces with other religious groups and with some disability advocates.

Massachusetts will be a very different arena: heavily Catholic (46 percent, according to a 2009 Gallup poll) and largely Democratic, it is also home to a knot of medical schools and facilities. Several prominent physicians, including two former editors of The New England Journal of Medicine, were among the original petitioners seeking a “death with dignity” law. The Massachusetts Medical Society has opposed the law, however.

So far the Senate front-runners have said nothing about the act, and probably neither will. “I’m not sure, on a question like this, that people look to political leaders,” said Stephen Crawford, a spokesman for Dignity 2012. “They look to their families.”

In the Southerland-Hertz family, the decision was clear. As Ms. Hertz begins reassembling her life, she wants to get more involved with Dignity 2012, gathering additional signatures, helping voters grasp what the proposed law allows — and doesn’t.

A.L.S. kills slowly, leaving plenty of time for discussion, so she knows what Mr. Southerland thought. “My husband and I both felt strongly that Massachusetts should pass this referendum,” she said. “People should have that choice. He didn’t.”

Should Doctors Learn to Grieve?

Why is it so difficult for doctors to confront the truth when a patient is dying, and almost impossible for most to talk about it openly with the patient and loved ones?

Last week I shared a hunch. A journalist asked me the question, “Why do doctors find these conversations so hard?” I said I could only speculate. But I would base my guess on decades of practice as a nurse and physician assistant, and watching doctors from the vantage points of those allied professions.

My guess was that doctors are among the people in our society most frightened by death. Their fear reinforces our society’s death taboo. They have not yet learned to live in harmony with mortality, and they don’t know how to grieve. Every dying patient presents another opportunity to deny the inherent role of loss and sadness in every human being’s life story. They act as though awareness of our transience does not define human consciousness, nor form the basis of our common shared humanity. In this way doctors are a bit “inhuman.”

The reporter said, “Wow, that’s really interesting.” Then the conversation ended.

This week comes news that science corroborates my hunch. The scientific study feels like synchronicity, coming so close on the heels of my flight of ideas.

Sunday’s New York Times carried Dr. Leeat Granek’s description of research into whether oncologists grieve when their patients die. She reports her central finding that, “Not only do doctors experience grief, but the professional taboo on the emotion also has negative consequences for the doctors themselves, as well as for the quality of care they provide. “

Dr. Granek’s study reveals that most oncologists suffer from unacknowledged grief, and they experience their sadness all mixed up with feelings of guilt, self-doubt, failure and powerlessness. They keep these feelings to themselves because that is the professional code. As an aside, I’ll mention here that professional approval of suppressed grief almost went to the extreme of labeling demonstrable grief a mental illness. But the panel of psychiatrists updating the DSM (Diagnostic and Statistical Manual of Mental Disorders – the bible of mental illness and its billing codes) bowed to public criticism and reverted to a two-month exception for bereavement in its definition of depression.

Granek’s work found that doctors’ unacknowledged grief comes out in impatience, irritability, emotional exhaustion and inattentiveness. Half the study participants admitted their thwarted grief affects the care of subsequent patients. It motivates them to continue aggressive, fruitless treatments long after palliative care would be more appropriate and to distance themselves from patients as death approaches.

We must draw the stunning and unavoidable conclusion that doctors’ averted grief constitutes an important cause of the deplorable end-of-life care that is America’s norm. Patients receive warrantless treatment through repeated hospitalizations and suffer the inevitable pain, bodily invasion, isolation and loneliness it brings. Perhaps instead of calling for more medical education, we should call for guidance in grief resolution and support for its expression.

When he was 82 my father suffered a fatal heart attack during a minor surgical procedure. After he died, my sister and I brought my mother to the hospital. I have always admired the doctor who came to us in the visitation room, crouched next to my mother’s chair, and wept. He gave my mother a great gift, and even through her creeping dementia, she never forgot it. He didn’t know my father well, but he was willing to feel and reveal his unity with the universal tragedy of losing one who is most dear. “You are not alone,” his tears said to her. “You and I and all human beings who love deeply must also someday bear the pain of loss.”

Grieving openly serves the important function of assuring ourselves and others that it is normal, and temporary, and part of a full and authentic life. Only suppressed grief threatens one’s mental health.
With training and practice, I believe doctors could learn to experience the sadness of a patient’s death, acknowledge it, decouple it from feelings of guilt or inadequacy, and move to the other side of grief. As poet Mary Oliver reminds us, though we must journey through black rivers of loss, the other side is salvation.

Doctors would do well to heed Oliver’s advice:

To live in this world
you must be able
to do three things:
to love what is mortal;
to hold it

against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.