End-of-Life Choice, Palliative Care and Counseling

Posts TaggedFrontline

Do Doctors Die Like the Rest of Us?

In November Dr. Ken Murray published a blog on Zocalo Public Square called “How Doctors Die.” It’s been reverberating through the Web ever since, prompting a continuous stream of comments and inspiring others to offer their own essays and input.

What struck a chord was the assertion that doctors with terminal illness often reject the long-shot technology that traps other people in cycles of hospitalizations, surgeries, procedures and chemicals, and ensures their final days will be in intensive-care lockdown. Do the same doctors who personally reject such misery recommend miserable, intrusive, painful, toxic and inhumane treatments for their patients? We can’t be sure. Dr. Murray provides no scientific studies. But he does speak of doctors who took a pass on miraculous cancer treatments, such as might “triple” the five-year survival rate. Even tripled, patients who opt for the treatment gain only a 15% chance of reaching that milestone, at great sacrifice in quality of life.

All this makes sense. Doctors are scientists, after all. They know the physical burden of intense treatments, and they know the odds are long against curing, or even lengthening life with cancers like lung, liver and pancreas. They know little has changed in cancer cure rates over the last 40 years, with the exception of childhood leukemia. And they know cancer therapy can make a person very sick and even cause the patient’s death. Bone marrow transplants, for example, have a 25% – 30% mortality rate from the treatment itself.

Dr. Murray also offered stories of regular patients, nonphysicians, who answered the siren call of medical technology only to die in misery, probably no later than they otherwise would have. This is the typical pattern of end-of-life care in America.

It reminds me of the stunning Frontline documentary about a New York stem cell transplant unit that aired in November 2010. The show included disturbing footage of specialists in this cutting-edge field, not so much cajoling their patients to accept extraordinary medical assault as communicating in behavior and attitude that there really is no other choice. To my astonishment and horror, two doctors asserted that dying patients owe it to society to suffer the agony of treatment and die under intensive care because “that is often what drives medicine forward and leads to discovery.”

The thought that these very doctors would play the odds, decline futile or invasive long-shot therapy, relax into palliative care and die at home seems an affront. Many of the comments to Dr. Murray’s blog come from the healthcare tribe — doctors, nurses, biomedical researchers — people who believe they too would refuse the treatments they regularly deliver to their patients. More than a few say their growing reluctance to inflict unnecessary suffering was the reason they left intensive care or hospital medicine.

When it comes to aid in dying (providing life-ending medication upon the request of a terminally ill, mentally competent adult) evidence suggests most doctors do want that choice for themselves. A 1997 survey of oncologists found about half could imagine a situation in which they would want assisted dying for themselves. Yet almost 7% of those could not imagine a situation in which assisted dying would be acceptable for their patients. In 2001 Dr. Linda Ganzini surveyed Oregon doctors about the state’s Death with Dignity law. She found 51% of Oregon doctors supported the new law and 53% would consider aid in dying for themselves if they were terminally ill.

I’ve always referred to that 7% and 2% as the “reverse golden rule” doctors. Withhold from others what you would desire for yourself.

But maybe that’s not as offensive as doctors who promote tough treatments to their patients that they would never accept for themselves. I’d call that the “perverse golden rule.” Urge others to endure horrific treatments you would reject for yourself.

I fully understand how complex and heart-wrenching treatment decisions can be. In differing circumstances I’ve both pleaded for and against heroic therapies for a person I loved. Yet I believe the time will come, and in the not-too-distant future, that most people see “do everything” medicine for what it is: Hardly the privilege of an elite population in a rich nation, it is rather a perverse imperative of science and technology unchecked by compassion or common sense. The truly privileged elite see this, and more often choose to die quietly in their own beds when the end of life inevitably approaches.

Good-bye Elizabeth Edwards: Thank you for Lighting the Way

Still recovering from last week’s distressing Frontline revelations of how life ends for cancer patients in the intensive care units of New York, I feel enormous gratitude to Elizabeth Edwards for showing us how to meet an imminent death with grace, courage and wisdom.

What a contrast between the sense of darkness, denial and disaster embedded in those hospital patients and their families, and the vivid celebration of life and love that surrounded Edwards as she died among loved ones, in her own home. What a gift to see her carefully take her leave, imprinting memories on friends and children to inspire and guide them their whole lives.

While there was a fight to win, Mrs. Edwards fought hard. But unlike the dying patients in the Frontline piece, medical science served her needs, not the other way around. While the Frontline doctors asserted that long-shot, dangerously intense treatments are to be endured as what “drives medicine forward,” Edwards’ physicians candidly advised her further treatment would be “unproductive.”

Thus, medical science released her to her own best judgment. Elizabeth Edwards possessed the intellect, stature and courage to negotiate that release. The choice of dying in peace and comfort should not be the exclusive domain of those with money, power and negotiation skills. Hospice, the great idea almost entirely absent from the Frontline piece, should be the treatment of choice for everyone in the situation Edwards faced.

CNN noted this well. They quoted Dr. David Casarett, of the University of Pennsylvania. “People in hospice don’t want to die. They want to live, and they want to live well,” he said. “They want to use whatever time they have to live the best way they can. I don’t think it’s giving up. It’s making a careful choice. The easiest thing is to go after treatment after treatment, and say yes to whatever gets offered next,” Casarett added. “The bravest thing is asking yourself what’s important, who’s important, what’s best for you and your family and choosing hospice that way.

Elizabeth Edwards did all that in spades. She understood Dr. Casarett’s words, their wisdom and their promise of hope: “Throughout my life, both personally and professionally, I have had the opportunity to see how people have been affected by illness and loss and the role the healthcare system may have played as they dealt with change in their lives. I also know that people can find a great deal of hope even in the most challenging of life’s situations. Hospice and palliative care professionals support and care for people at a time when hope can be hard to find.”‘

When hope of conquering cancer becomes vanishingly small, another hope arises. This is the hope of dying well, dying gently and in comfort and peace with loved ones close. Elizabeth Edwards hoped for that and achieved a great success in making it happen. May her lesson help light the way and heal our broken manner of dying in America.

Different Worlds

The PBS Frontline show, “Facing Death” continues to resonate in blogs and opinion pieces across the nation. Many people told me how hard it was for them to watch it. The footage is indeed challenging, for it displays a parade of suffering and grief, with precious little compassion or joy in balance.

Yet the dialogue and the stories carry powerful lessons. So I watched it again and talked with others who had also watched it twice. I read the transcript. The stories reveal startling truths. Each truth warrants a blog of its own, and more. Here are a few of the most distressing:

1. Patients receiving aggressive therapies often die of those therapies, not of their underlying disease. We meet one patient who succumbs to the consequences of his treatment and others who barely survived, only to see their disease recur and die soon thereafter. A bone marrow transplant specialist tells us stem cell transplants kill up to 30% of recipient patients.

2. When doctors talk about a patient’s situation, they say very different things to each other than to the patient and the patient’s family. The difference is not only medical jargon versus plain speaking. The difference is scientific understanding versus wishful thinking.

3. Palliation and hospice play practically no role in the medical care of these patients. Hospice, the gold standard for symptom management and peaceful, gentle dying, appears only as a final receptacle for treatment “failures.”

4. To doctors, death is the enemy; suffering is not. Suffering is a heroic contribution to the advance of science, or the worthy price of living one more day in a hospital.

The concept of a “good death” does not exist in this world – the wards of Mount Sinai shown in this film. The sad truth is these patients probably relinquished any possibility of a “good death” when they signed up for the aggressive treatments we see them endure. Indeed, most of the physicians seem untrained in the elements of a good death and they discount its value as the graceful acknowledgment of mortality and compassionate legacy to bestow on family.

But there is another world. By coincidence, just a few days earlier the Dartmouth Atlas Study mapped the locations in the United States where these two worlds simultaneously exist. The first world, where patients dying of cancer endure repeated hospital admissions and long internment in the intensive therapy units of academic institutions, is in Manhattan and Los Angeles. Forty-seven percent of patients in those locales die that way. The epicenter of the other world, where cancer patients die at home and receive comfort care, is Mason City, Iowa. Only 7% of cancer patients there die in a hospital.

The author of the report, Dartmouth Medical School professor Dr. David Goodman, says, “We know that the care [patients] receive has less to do with what patients want and is more about the hospitals they happen to get care at. Generally, the care often doesn’t represent their preferences.” In an interview, he said, “On average, patients, particularly with advanced cancer, would much prefer to receive care that allows them the highest quality of life in their last weeks and months — and care that allows them to be whenever possible at home and with their family.” A news release from the National Hospice and Palliative Care Organization cites the study to confirm that many patients receive aggressive treatment when they’d prefer comfort care, and “for frail elderly patients, and any patient with advanced cancer, these treatments have limited or no benefit.”

Limited or no benefit. People living in the worlds of Manhattan and Mason City do not differ in their rates of cancer survival, or how long they are likely to live with advanced cancer.

One of the touchstones of my advocacy is the example set by Jacqueline Kennedy Onassis. Although she lived at the epicenter of the aggressive treatment world, she died like a Mason City native. Diagnosed with non-Hodgkins Lymphoma in early late 1993 or early 1994, she received care at a prestigious academic center — Cornell-New York Hospital. She continued to work as long as she could. On May 18, 1994 she visited her hospital physicians for the last time. She left without allowing them to admit her, returning home instead. There she died the next day.

In announcing her death to the crowds gathered outside her apartment, her son, John Kennedy Jr. said, “My mother died surrounded by her friends and her family and her books, and the people and the things that she loved. She did it in her own way, and on her own terms, and we all feel lucky for that.”

The physicians of Manhattan would do well to learn how to enable patients to follow her noble and courageous example.

Facing Death? Frontline Shows Who Will and Will Not

Last week the Dartmouth Atlas Project released startling information about how many Americans with end-stage cancer die in intensive care units and acute care hospitals, with all the attendant invasive procedures, family isolation and suffering that implies. About one third, as it turns out. Too many, considering almost everyone’s stated preference is to die at home.

The Project’s other revelation was astronomical variation by location . People dying of cancer in New York City are seven times more likely to end their days tethered to tubes, probes and machines than those dying of the same diseases in Iowa City. Seven times. The cancer patients in New York don’t live longer than those in Iowa City. It’s just that technology and agony are more likely to dominate their last days.

Tonight, the PBS show Frontline illuminates the Dartmouth data with a bedside view of the New York style of end-of-life care. Called “Facing Death: Families make end-of-life choices” it offers examples of physicians, patients and families who do face death honestly and others who studiously avoid facing it. I encourage those who want to understand how current medical practice fails patients at the end of life, and glimpse avenues toward hope, to watch the Frontline documentary with these questions in mind:

  • Several doctors are highlighted, working with patients and talking to us about their experience and philosophy. Which doctors seem to center their work and perspectives on patients? Which focus on procedures and symptoms?
  • Where does effective, clear communication among doctors, patients and families appear? Are some communication styles ineffective?
  • Among all the patients, families and physicians portrayed, who acknowledge death is approaching?
  • Who initiates discussion of the quality of the patient’s remaining days? Who stops the discussion by changing the subject?
  • Who speaks with a clear and forthright voice about a patient’s situation, needs and desires? Who blurs their statements with phrases like “I’m not sure . . . .?”
  • When do doctors present full information about options – potential harms and benefits – and allow patients to make explicit informed choices?

Will the medical profession – particularly those in New York – be affected by this Frontline documentary? Will it spur medical educators to develop classes on how to talk meaningfully with people nearing the end of life? Young doctors need to learn to ask more open-ended questions, take more time to find out what is on people’s minds and be more honest about what to expect from the treatments they offer. It should persuade acute care physicians to enlist chaplains, psychologists or others prepared to support patients and families through the grief of impending death, if they cannot do it themselves.

“Facing Death” should spur everyone to work hard to extract a candid assessment of any treatment’s chance for success. We should prepare our loved ones with knowledge of our beliefs, attitudes and preferences. Sadly, most of the physicians shown here do not work from a model with their patients at the center, and few communicate in a style that gives full and frank information and solicits patient input. Until they change, patients and families must themselves face an approaching death and drive the discussion of end-of-life choices.