End-of-Life Choice, Palliative Care and Counseling

Posts TaggedNew York Times

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.

When Demented Patients Receive Feeding Tubes

May 9, 2011
The New York Times

I wrote a few months back about one of the toughest decisions families face as their elders falter: whether to allow insertion of a feeding tube. Somehow, this question seems to stir up even more doubt and anxiety than other medical interventions intended to prolong or improve life. When a senior nears death and cannot speak for herself, we may find it easier to say no to cardiopulmonary resuscitation or a ventilator than to say no to nutrition.

Nourishment, after all, is the way we show love and care from the earliest moments of life. “What happens when you get sick?” said Dr. Joan Teno, a community health physician and researcher at Brown University. “Your mom feeds you.”

So for nursing home residents with advanced dementia, sons and daughters often opt to return the favor — even though the medical consensus is that it’s not a favor. Most dementia patients will eventually develop problems with eating and swallowing as the disease progresses, but feeding them through surgically implanted tubes has not been shown to improve their survival, to prevent pneumonia or heal bedsores, or to improve their quality of life. Nevertheless, about a third of nursing home residents with advanced dementia do receive feeding tubes, usually during a hospitalization.

Dr. Teno’s most recent study, published on May 3 in The Journal of the American Geriatrics Society, goes a long way toward explaining why that happens.

She and Dr. Susan Mitchell of the Hebrew Senior Life Institute for Aging Research, veteran researchers (for 10 long years) into the use of feeding tubes, led a team surveying family members, after their relatives’ deaths, on the decisions they’d made. They interviewed 486 people in five states, two with low rates of feeding tube use (Massachusetts and Minnesota) and three with high rates (Alabama, Florida and Texas).

The fact that some American hospitals inserted no feeding tubes — zero — in patients with advanced dementia over an eight-year period while others intubated one in three, findings from a previous study by these researchers, was a tip-off that something besides medical need was at work.

What emerged from families’ accounts is that the decision process about feeding tubes hardly merits the phrase “informed consent.” Of patients who received feeding tubes, 13.7 percent of family members reported that doctors had inserted the tubes without seeking permission at all. “I just walked in and it was there. Nobody talked to me,” one relative told the interviewer.

This stunned even an old hand like Dr. Teno. “My expectation was, we’ll find there weren’t good discussions,” she told me in an interview. “I wasn’t thinking we’d find there was no discussion.”

But even when medical providers raised the issue and a feeding tube was inserted, 12.6 percent of the family respondents said they had felt pressured by the physician to agree to the procedure, and more than half believed that the physician strongly had favored tube insertion. Moreover, these talks tended to be cursory: More than 40 percent of respondents said the discussion had lasted less than 15 minutes, and roughly a third said no one had mentioned the risks involved.

“We’re falling short of our ideals,” Dr. Teno lamented.

The frequent failure to outline the problems associated with feeding tubes was particularly disturbing, in her view. When demented patients are bothered by their tubes — and almost 40 percent of family members said they had observed signs of distress — they often try to pull out the tubes. “Then they’re given drugs to sedate them, or their hands are tied down,” Dr. Teno said. In this study, where patients’ average age was nearly 88, more than a quarter of those with tubes were restrained, physically or with medication. Tubes can also cause infections, nausea, vomiting and diarrhea.

Why the apparent push for feeding tubes? “My guess is, we’ve changed hospital medicine to focus on discharge,” Dr. Teno said. “How do we move someone quickly out of the system? You put the feeding tube in, you send people back to the nursing home.”

The pressure has less to do with fees, she thought — it’s not particularly expensive to put in a feeding tube, relative to other hospital procedures — than with time. Explaining to families what feeding tubes can and can’t do, answering their questions as they grapple with the decision, takes a lot of that.

(My own theory: It also requires an acknowledgment that advanced dementia is a terminal condition. Too often, doctors still don’t want to talk about death.)

In the end, about a third of these families said they thought the feeding tube did improve their loved ones’ quality of life, while only 23.4 percent said they regretted the use of the tube. Yet Dr. Teno wonders how well those numbers reflect reality.

“We mismanage this final chapter of life, and it can be traumatic for family members,” she said. (She’s also a hospice medical director.) In the aftermath, “people have to make peace with their decisions.”

But perhaps they would have reached different decisions if they’d gotten more information, and more unbiased information, before they had to make them.

Yearning for Freedom and Control

Jane Brody wrote about advance care planning in yesterday’s New York Times and directed people to Compassion & Choices for our free Good to Go Guide. Our phones have never been busier. Everyone here has dropped their usual duties to answer calls and send materials to people all over the country. In just a few hours we counted 600 requests by telephone. Even greater numbers of people downloaded the documents directly from the website.

What’s the reason for this enormous demand? Once again, we see the simple, overwhelming desire of people everywhere to chart their own course as the end of their lives comes into view. A person’s last days may still be off in the distant horizon, but the yearning for a death that honors the life and the determination to remain a FREE person is palpable when thoughts turn to life’s end. .

Ms. Brody suggested people complete two documents. One is a Living Will to document your wishes. The other designates your Health Care Agent, to carry out your wishes with concrete decisions about procedures or treatments if you become unable to speak for yourself. The documents work in concert and sailing forth with only one means you’re boat is inherently leaky.

A Living Will alone is incomplete. It needs a designated agent: a specific person you charge to negotiate the death you feel fits the values and beliefs of a lifetime. It’s important to name this person, and most important, to talk with this person, preferably with other loved ones present. They will be able to confirm and validate future decisions so the agent doesn’t bear sole weight of responsibility.

A designated Health Care Agent (or Proxy) needs a Living Will as firm, undeniable evidence of your choices. Let’s face it; doctors may apply enormous pressure to accept tests and burdensome treatments with extremely low chance of recovery or substantial improvement. Your Healthcare Agent will need the strength of documentation to say with conviction, “I’m sure my dad would not want that, if there’s no chance he’ll return to a functioning life.”

I don’t think most doctors fully realize how deeply people care that their ideas and their principles, govern their end-of-life decisions. Doctors seem to think what matters most to people is how many days they exist on this planet.

No, doctors. For most people, it is not how long our days measure, but the measure of our days that grips our minds in the quiet moments of dawn. When we awaken early and thankfully greet another day, we nod to our acknowledged mortality and comfort ourselves with one hope — that our deaths will be on our own terms, in full expression of who we are and the life we lived.

Keep Your Voice, Even at the End of Life

by Jane Brody
New York Times
January 17, 2011

The specter of “death panels” was raised yet again this month, prompting the Obama administration to give in to political pressure a second time in its effort to encourage end-of-life planning.

Of course, the goal of this effort was not to make it easier to “pull the plug on grandma” in order to save the government’s money, as some opponents would have it. The regulation in question, which was withdrawn just days after it took effect on Jan. 1, simply listed “advance care planning” as one of the services that could be offered in the “annual wellness visit” for Medicare beneficiaries.

The widespread misconceptions about the regulation were exemplified in a letter to the editor published Dec. 29 in The New York Times. “Death panels,” the writer said, would have denied her 93-year-old mother colon cancer surgery that has given her the chance to live “several more years.”

But that is not at all what the regulation would have done. Instead, “by providing Medicare coverage for end-of-life planning with a physician, it would have encouraged doctors to talk to their patients about their wishes and made it far easier and more likely for these important conversations to take place,” said Barbara Coombs Lee, president of Compassion & Choices, an organization that helps people negotiate end-of-life problems.

With payment schedules that limit doctor visits to a mere 15 minutes or so, it is unreasonable to expect physicians to spend 30 or more unreimbursed minutes discussing with patients the many decisions that can arise at the end of life.

Encouraging such conversations might indeed save money in the long run. Doctors and hospitals are paid only for treating living patients, so there is always a possibility that financial incentives, conscious or unconscious, would prompt many expensive if futile life-extending measures — efforts that many patients would veto if they could.

In a study of patients with advanced cancer published in March 2009 in Archives of Internal Medicine, the costs of care during the last week of life were 55 percent higher among those who did not have end-of-life discussions with their doctors.

At least as important, the quality of life in their final days was much worse than among those who did have such discussions. Countless studies have shown that extensive medical interventions can make the last weeks of life an excruciating experience for patients and those who care about them.

An Individual Decision

Although talk about end-of-life options has often emphasized avoiding unwanted, intrusive and futile care, that does not mean everyone would or should make that choice. Many patients, especially younger ones, might be inclined to ask that every conceivable measure be taken.

Dr. Josh Steinberg, a primary care physician in Johnson City, N.Y., routinely discusses end-of-life desires with very ill patients. He told me about an AIDS patient who was down to 77 pounds and had no strength, no appetite and failing kidneys. But the man refused hospice care, saying he wanted to go home and live as well as possible for as long as possible.

“Though we didn’t think he’d last more than a day or two, we got lucky,” Dr. Steinberg said. “We stumbled on a new treatment, he rallied, and he’s home doing well right now.”

For other patients, hospice care is the right decision. Studies have found that terminally ill patients are likely to live longer, with a better quality of life, when they choose hospice over aggressive treatment to the bitter end.

The point is that end-of-life care is an individual decision that should be thoroughly discussed with one’s family and physicians. Studies have shown that when doctors don’t know a patient’s wishes, they are inclined to use every possible procedure and medication to try to postpone the inevitable. More often than not, this shortens patients’ lives and prolongs bereavement for the survivors.

In an interview on the syndicated news program “Democracy Now!” on Jan. 5, the writer and surgeon Dr. Atul Gawande said that patients with terminal cancer who discuss end-of-life choices with their doctors “are less likely to die in the intensive care unit, more likely to have a better quality of life and less suffering at the end, do not have a shorter length of life, and six months later their family members are markedly less likely to be depressed.”

Plan While You Still Can

For many more of us these days, the end does not come swiftly via a heart attack or fatal accident, but rather after weeks, months or years battling a chronic illness like cancer, congestive heart failure, emphysema or Alzheimer’s disease. When doctors do not know how you’d want to be treated if your heart stopped, or you were unable to breathe or eat and could not speak for yourself, they are likely (some would say obliged) to do everything in their power to try to keep you alive.

A year ago, my husband was given a diagnosis of Stage 4 cancer. As his designated health care proxy, I had agreed long before he became ill to abide by the instructions in his living will. If he was terminally ill and could not speak for himself, he wanted no extraordinary measures taken to try to keep him alive longer than nature intended.

Knowing this helped me and my family avoid agonizing decisions and discord. We were able to say meaningful goodbyes and spare him unnecessary physical and emotional distress in his final weeks of life.

Preparing these advance directives should not wait until someone develops a potentially fatal disease. Patients in the throes of terminal illness may resist discussions suggesting that death may be imminent, and close family members may be reluctant to imply as much.

Indeed, judging from national studies and people I know (including a 90-year-old aunt), most Americans regardless of age seem reluctant to contemplate the certainty that one day their lives will end, let alone discuss how they’d want to be treated when the end is near.

A study published in January 2009 in The Journal of the American Geriatric Society showed that 40 percent of people questioned had not yet thought about advanced-care planning and 90 percent hadn’t documented their wishes for end-of-life care.

Ideally, everybody over 18 should execute a living will and select a health care proxy — someone to represent you in medical matters.

Compassion & Choices has an excellent free guide and “tool kit” to help people prepare advanced directives. They can be downloaded from the organization’s Web site, www.compassionandchoices.org (select the “care” tab, then “planning for the future”) or call (800) 247-7421 for a free hard copy of the documents.

At the End of Life, Denial Comes at a Price

Today’s New York Times blog, The New Old Age, highlights the economic impact of end-of-life care discussions. The article addresses the recent finding that patients who discuss their end-of-life treatment preferences with their physicians end up spending an average of 36 percent less than patients who didn’t.

An excerpt: “Dr. Holly Prigerson, a professor of psychiatry at Harvard Medical School and an author of the study, explained that the patients who never talked about their end-of-life wishes were more likely to be resuscitated, intubated or put in intensive care — or all of the above. Patients who had had those conversations generally opted for comfort, or palliative, care at home or in a hospice at much lower cost.”

The Times blog mentions Compassion & Choices as a resource for patients who want guidance on talking with health care providers and making treatment decisions.

Read it here.