RELIGION & THE END OF LIFE

Attached is a link to Nicholas Kristoff’s column in the NY Times (Tussling Over Jesus). It is an insightful look into an abortion controversy involving a hospital, an ethics committee, and the Catholic Church, with comments in response on line. It caught my eye in relation to Community Ethics Committee’s work because in researching medical futility and advance directives, I’ve been struck by the depth of emotion, opposition and us-vs.-them language from pro-life news sources regarding end-of-life-related health care policy changes. These “slippery slope” fears seriously complicate resolution to bioethics questions, and aren’t going away anytime soon. What’s the way forward?

http://www.nytimes.com/2011/01/27/opinion/27kristof.html?adxnnl=1&adxnnlx=1296144431-C/z04B3hQqx1XAhgR4cCrQ

Dr. Nash's perspective on palliative care issues

Dear readers,
One of our most poignant areas of research is palliative care - providing care to alleviate suffering,
often used in end-of-life care. I just ran across this abstract (and accompanying podcast) by Ryan R. Nash, MD, at the University of Alabama at Birmingham.   Nash states,  "Some in the movement have changed the responsibility of a physician from caring for the patient to eliminating a patient’s suffering. This new proposed responsibility demands success that is not possible without a willingness to render a patient unconscious or to cause their death."

What do you think?  Is it wrong to make a patient unconscious if it is the only way to alleviate someone's intractable suffering?   Is suffering a part of the dying process that we should just accept, even if it seems unbearable?

Click here for Nash's 15-minute audio podcast from the 2010 annual Center for Bioethics & Human Dignity conference:

      http://cbhd.org/content/enhanced-dying-exploring-dangers-palliative-care-moving-beyond-therapy

Abstract: The palliative and hospice movement have helped ensure quality care for patients with advanced and terminal illness. What began as a nursing led, volunteer run service for the dying has moved to the health industry and to the academy. This good movement is growing in its scope and ability. However, with this growth has come an ethical challenge to the limits of medical therapy directed to relieve the suffering of a dying patient. Some in the movement have changed the responsibility of a physician from caring for the patient to eliminating a patient’s suffering. This new proposed responsibility demands success that is not possible without a willingness to render a patient unconscious or to cause their death. This presentation will address how changing definitions of death, institutionalization of death, dualistic anthropology, and this new responsibility of medicine can encourage care beyond therapy to intentional sedation and assisted death. Corrected definitions and processes will be offered that will encourage responsible care of patients without violating accepted ethical standards.

THE GOLUBCHUK CASE: FAITH & FUTILITY

Grace is the name of the hospital where Samuel Golubchuk died. Grace in no way is descriptive of the path his death took.

In my last post, I wrote about distrust of doctors and the American health care system. The extent of that distrust can be jaw-dropping, especially living as I do near Boston, where patients come from around the world for health care. Clearly, not everyone distrusts doctors and large systems.

In my own nascent study of contemporary medical care for dying patients, I’ve belatedly discovered the case of Samuel Golubchuk in Winnipeg, Manitoba, where a medical board overseeing health care in and around Winnipeg had attempted to inject order into the medical futility chaos. The board essentially gave physicians and hospitals veto power over patients or their surrogates in end-of-life decisions.

Golubchuk had suffered a catastrophic brain injury, and in late 2007 his condition was complicated by serious conditions deemed irreversible after he was moved to Grace from a residential care facility. When ICU doctors at Grace wanted to remove him from life support, his two adult children disagreed, and successfully sued to force care to continue. The family said removing the ventilator or feeding tube would violate his beliefs as an Orthodox Jew by acting to hasten his death. And though the family succeeded in getting a temporary injunction to force care to continue, three doctors resigned rather than continue the court-ordered care (half the ICU physicians), and Samuel Golubchuk was on life support when he died in June 2008 at age 85. After their father’s death, the brother and sister dropped the suit.

After the three colleagues resigned, another physician met with the family and their lawyer, and volunteered to oversee Golubchuk’s care. Days later, he delivered a eulogy and was a pallbearer at Golubchuk’s funeral. “I was honored and privileged to care for him,” the doctor told the mourners.

A reference from months earlier, in February 2008, caught my eye. It was from a story on LifeSiteNews.com: “The 84-year-old cognitively disabled patient’s family has been battling hospital doctors who are determined to starve and dehydrate him to death regardless of the family’s wishes.” Such a straightforward, journalistic writing style, and a matter-of-fact way of ascribing murderous intent to the doctors. The writer might have referred to Golubchuk as a dying man, but went instead with “cognitively disabled patient.” And perhaps the physicians might have been given a nod for compassion rather than being “hospital doctors determined to starve and dehydrate him to death.”

Consider that people at the end of life naturally stop eating and drinking. Forcing fluids when dying is in process can itself be cruel and painful, and no one knows this better than a doctor in ICU -- except maybe an ICU nurse.

I know little about these Canadian doctors, and perhaps they are equal parts Jack Kevorkian and Hannibal Lecter. I have my doubts, and question the motives behind media portraying them as having no regard for the sanctity of human life. This is dehumanizing and unfair.

In the opinion of the physicians, basic care of Golubchuk had ceased to be therapeutic, and made the transition to bad care. Though medical professionals regularly administer painful treatments, it is with the assumption of therapeutic purpose. Remove that purpose, even in dispute with family, and they are pointlessly inflicting pain on an elderly dying human. Such was Golubchuk’s physical state that changing his dressing or catheters was “tantamount to torture,” according to the attending who resigned. But hardened ideology demands dismissing “torture” as overstatement. As one web commenter wrote: “What I don't like is doctors exaggerating the level of pain their treatment is causing. It's obvious that doctors in Manitoba ... really are pushing for legalized killing.” The comment was as telling as it was anonymous.

Nowhere in the various media reporting on the case could I find the voice of an ICU nurse involved in Golubchuk’s care. And if I trust anyone’s judgement on whether the man’s care was bad or good, torture of necessary therapy, it is the nurses tasked with doing most of the actual hands-on work.

Though the Golubchuk case didn’t fully play out in court, the Winnipeg Regional Health Authority is investigating how officials can better handle such disputes between physicians and patients. This medical regulatory body “was the first in Canada to introduce guidelines for physicians to follow when dealing with end-of-life issues,” the Winnipeg Free Press reported. “They say the minimum goal of life-sustaining treatment is for patients to recover to a level at which they can be aware of themselves, their environment and their existence. In the event families and physicians don't agree that life support should be withdrawn, doctors have the final say.” The board’s report is due out in the spring.

Dr. Susan Block, a palliative care specialist in Boston, has called communication as demanding a procedure as surgery. But communication isn’t a uniform skill among doctors or patients. In Winnipeg, at no point was the dialogue between doctors and the Golubchuk family facilitated by a patient advocate, ethicist, or mediator, let alone a palliative care specialist. I’ve found no reference to a chaplain or rabbi’s involvement.

Here’s where I sound like a broken record: This tragic story of a man dying in a way he would never have chosen, though it played out in Canada, underscores why it is so unfortunate that “voluntary advance care planning” was removed from American Medicare payment policy. To the degree possible, the complicated and emotionally charged end of life conversation between doctor and patient needs systemic weight and encouragement.

It was acceptable for all concerned to put Samuel Golubchuk on life support in the first place. Medical judgement and Jewish law were in apparent alignment at that point. The problem came in the idea of disconnecting him from that same equipment, which the family considered no longer for a doctor to decide, but in God’s hands.

If physicians and hospitals aren’t trusted to decide when medical care is futile and a life is ending, and neither are they encouraged systemically to discuss end-of-life priorities with a patient, that’s a hell of a box in which to practice medicine.

Further, if physicians and hospitals can be forced to deliver care against their ethical judgement to honor a patient’s religious faith, could they be made to perform euthanasia or assist in the suicide of any patient who wanted to die and had no belief in the sanctity of human life? Now that is a slippery slope.

What’s the answer? God only knows. In the meantime, some legislation would help.

BAD CARE, BY POPULAR DEMAND

Spring 2006 is when the miracle occurred. It is when medical science saved my daughter’s life with a bone marrow transplant. But there weren’t enough miracles to go around, and in the weeks just before and after the transplant, three children we’d come to know at Boston Children’s Hospital died. One young woman needed a transplant but lacked a donor. She’d spent hours on the ward playing with a younger boy who would attend her funeral, delivering a cribbage board to her casket, days before recurrent cancer killed him. Another young boy also had a cancer stubbornly resistant to treatment. He died after therapeutic options ran out, his family said goodbye, and he was removed from the respirator.

The juxtaposition of my family’s good fortune with tragedy for these other families changed me in ways I’m still sorting out. Certainly my respect for life and acceptance of death became interwoven as they’d never been. And now, with my colleagues on the Community Ethics Committee having just concluded studying the use of palliative sedation for the imminently dying, we are considering what ought to be our next ethics engagement. Two subjects stand out: medical futility and advance directives.

Medical futility is the point at which the doctor believes dying is in process and treatment is of no therapeutic value. This is a brutal truth to admit or convey, and can be a trigger point for disagreement, as the patient or family insist that “something” be done to prolong life. Who is to say nothing can be done when feeding tubes and ventilators can prolong life indefinitely? If you believe in miracles, then “doing something” can mean keeping an otherwise dying loved one alive by artificial means and praying for intervention. But faith alone isn’t a treatment plan, and so the doctor must choose between denying futile treatment or providing bad care by his or her own professional standards. Either way, integrity is compromised.

Advance directives offer a solution to this scenario, in at least some cases. An advance directive is essentially a road map drawn for the physician by the patient and spelling out what is worth fighting for, and what is not. Given the stated desire of many patients not to die in a hospital, advance directives are a means for that desire to be honored, even for a patient who can no longer express the wish.

The problem is, the better medical science gets at extending life, the worse society gets at coping with the reality of death. Just recently, a New Jersey court ducked the medical futility issue and sent it to the state legislature; a futility bill passed the Idaho senate but then stalled; a health board in Winnipeg, Manitoba, is sorting out a dispute over treatment of a man who died during a “temporary injunction” in a doctor-family futility impasse; and the Obama administration withdrew “voluntary advance care planning” from Medicare funding policy. Medical futility, advance directives and health care policy seem to be swirling in a perfect storm that is frighteningly complex for society to effectively confront, but is building off the coast like an El Nino.

The questions are so daunting that only one state legally supports a physician who refuses to provide inappropriate treatment. In Texas, if a hospital ethics committee agrees with the physician’s assessment that the patient is beyond therapeutic treatment, the law supports withholding inappropriate care. One argument used to defeat a similar measure in Idaho was that it would allow physicians to disregard an advance directive -- that is, to go against a patient’s wishes, which this argument holds sacrosanct. Such a slippery-slope fear also foresees the physician empowered to decide which lives are worth living. This view doesn’t hold physicians, or the system in which they work, in very high esteem.

Such distrust -- of doctors, health care institutions, and government -- is getting in the way of an urgently needed national conversation about how we die. Meanwhile ICUs keep more people mechanically alive, families face moral choices previous generations never had to consider, and costs are the elephant in the room.

At its influential extreme, the pro-life movement forcefully opposes the type of end-of-life planning required for an advance directive. A pro-life website recently celebrated the removal of “voluntary advance care planning” from Medicare funding (“Obama Admin Removes Death Panels After Pro-Life Backlash,” Lifenews.com). But advocating planning of end-of-life care is not the same as end-of-life advocacy. The distinction is important. Slippery-slope fears of rationing and devaluation of life put the pro-life movement in the position of tacitly endorsing and encouraging bad medical care.

Neither medical futility nor advance directives came up during my daughter’s illness. We never got to the point of no more options for medical treatment, and maybe I’d feel differently if we had. But therapeutic options ran out and hard choices were made by the other three families, with whom we shared doctors and nurses dedicated to saving all our children’s lives. Those physicians didn’t make judgements on lives worth saving; they acknowledged with sadness the limits of their life-saving skills.

Whichever one we study first, medical futility and advance directives will be on the CEC’s radar for a long, long time. Anything this difficult to talk about -- for doctors and patients, and for the society we live in -- must matter a great deal. In the dialogue, perhaps we’ll discover the renewable nature of trust.

THE POLITICS OF END-OF-LIFE DIALOGUE

When I was a newspaper copy editor, death was death. There was no getting around it, no matter how much a kind-hearted writer wanted to soften the blow. And so when that journalist wrote in an obituary or other life remembrance that the individual “passed away,” my job was to replace the euphemism with clarity and call it what it was: Death.

I thought about this a few years ago when a sibling called to tell me Mom had “passed on.” It didn’t help my sadness to think Mom hadn’t died, but instead had “passed on.” But that was no time to play copy editor. I thought about this again while reading the New York TImes story headlined “U.S. Alters Rule on Paying for End-of-Life Planning” (January 5, 2011). The story told of the Obama administration’s decision to delete references to end-of-life planning from Medicare regulations covering annual physicals under the new health care law. (http://www.nytimes.com/2011/01/05/health/policy/05health.html?_r=1&emc=eta1)

Deleting reference to voluntary advance care planning, according to an administration official quoted in the Times, “should not affect beneficiaries’ ability to have these voluntary conversations with their doctors.” I’d like to think this is true, and I don’t doubt that the phrase “voluntary advance care planning” would become ammunition for those who would gut the new health care law for fear of federal government. Perhaps the deletion will help the health care law survive the new Congress.

As a colleague on the Community Ethics Committee pointed out, the health care law got in trouble for allowing the doctor to charge for his or her time in discussing voluntary advance care planning with the patient. These conversations are crucial to helping a patient understand options and set goals of care. Now, those discussions may continue, but they won’t be "billable" in a pure sense. As such, they are not systemically encouraged, and these doctor-patient dialogues need to be systemically encouraged, for ethical reasons, for economic reasons, and simply to encourage good care.

The Minnesota Star-Tribune said it well: “Advocating end-of-life care planning does not equal end-of-life advocacy.” This is an important distinction, and it is lost in the Medicare policy change, a political change with no regard for the conversation that is surely taking place right now on an intensive care ward in which the patient has no say in his or her own fate. Perhaps the patient would like to die at home, as most would, but it’s too late for that choice to be considered. Perhaps the patient would not want extreme measures to extend life, but the family doesn’t know that, because the conversation never took place. Perhaps well considered “goals of care” would clarify the path ahead, but the unconscious are past the point of goal consideration.

I’m not worried about those doctors already artful and gifted at the end-of-life conversation, or the patients and families who approach death with grudging acceptance and eyes wide open. They don’t need the support of clearly stated policy. I am worried about the doctors for whom this conversation is an artless dance, at best, and end of life is a topic that is somehow taboo. I am worried about their unfortunate patients, and the nurses caught in the middle, burning out fast, and thinking about a career change.

If the end-of-life dialogue survives this Medicare language change, that’s what matters most. And maybe it’s wise of the Obama administration to avoid the controversial language while upholding the integrity of the policy. That, too, is an artful dance.

But the end-of-life conversation between doctor and patient is a sacred exchange. It is perhaps the ultimate intersection of art and science. It is enormously difficult, and doctors and patients are not uniformly able to explain or comprehend. This makes it all the more important that the conversation not be put off until the patient is no longer conscious, which occurs far too often. This is unthinking. It is cruel to family members who must make brutally hard choices and guess what the patient would have wanted. It unnecessarily compromises the doctor’s guidance for care. And it’s a sad reflection on the state of a nation that prides itself on its medical care, but on the subject of death would rather pass.