Bringing the Best of Religion into Medicine

Yesterday I went to the funeral of my older daughter-in-law's mother. She was a much-loved person who was very active in her church. The beautiful Episcopal ceremony evoked her spirit with love and humor. The minister conducted the service in a spirit of inclusiveness and solidarity. The words from John 14:2 - "In my Father's house are many mansions" - were interpreted as reflecting love of all humanity, not as a promise to believers alone.

For me the service brought out what is best in religion. Three years ago I wrote that all liberal (i.e., inclusive) religions are comparably true and good and all fundamentalist (i.e., exclusive) religions are comparably false and bad. I continue to hold that view.

Even though I'm thoroughly in the secular humanist fold, over the years of medical practice I often found that religious language felt truer to the aims of clinical care than purely secular modes of expression. Here are four examples:

"Omniscient being." In all areas of medicine we often bump up against uncertainty. At times that my patient and I wished we knew what to do or what to expect, I might say something like "if we had access to an omniscient being, we wouldn't have to wonder about XYZ..." The concept of a god evoked our wish for the assistance that a benevolent god would give us, and at the same time, acknowledged our limitations.

"Blessing." Historically, to be "blessed" meant having god's favor. Our perfunctory"God Bless You" when someone sneezes goes back to pre-antibiotic days when sneezing might presage pneumonia and pneumonia could mean a rapid death. Even though I don't believe in a god who might intervene, comments like "let's hope that you will be blessed with better health" felt like a stronger expression of hope and possibility than they would with purely secular phraseology.

"Prayer." Many years ago, a patient of mine who conducted himself courageously despite significant impairment from chronic schizophrenia, ended an appointment by asking me to remember him in my prayers. Without thought or hesitation, I said I would. I took my patient to be requesting that I care about him deeply and feel for him  what I've written about as "the right kind of love between doctors and patients." Since I did feel that way about him I felt I was speaking truth in committing myself to remembering him in my prayers.

"Calling." In its original meaning, a "calling" came from god in the literal form of god's voice. The clinicians I respect most among physicians, nurses, social workers, and other health professionals ("profession" is another term that comes from a religious context) all think of health care as a "calling." Many religious clinicians understand the calling to health care as a call from god - literally, to do "god's work." But when I've used the concept of "calling" with first year medical students in the ethics class, it gets a mixed reception. For some it rings true. They feel "called" to a sacred profession, whether they're believers or not. But others have chided me for being too moralistic. For them, medicine is a "job." I don't try to talk them out of this view, but I do suggest that when they're with patients at the bedside, the "job" may be transformed into a "calling."

When my mother experienced the cerebral hemorrhage from which she died a few days later, the ambulance took her to a Catholic hospital. I was impressed and comforted by the spiritual wisdom of the care she and her small family (me and my father) received, especially from the nurses. And when I visited the Swami Vivekananda Hospital in Saragur, India, in 2009, I learned that twice a week they conducted a non-denominational prayer service for patients and staff. Religious language and "liberal" religious practice make superb partners for the enterprise of health care!

Euthanasia and the Slippery Slope

Some of the arguments for and against what is now being called "Physician Assisted Death" (PAD)  rest on core ethical beliefs and are intractable. But the "slippery slope" argument that legalizing PAD in limited and arguably ethically acceptable circumstances, as with the Oregon "Death with Dignity Act," will inevitably lead to ethically unacceptable actions, is testable.

PAD became legal in Oregon in 1997. In the intervening 19 years there has been no significant public pressure to legalize PAD for persons who are not terminally ill, and no evidence suggesting that PAD is victimizing vulnerable populations such as the poor, ethnic minorities, or frail elderly. PAD is a relatively infrequent event, accounting for 0.4% of deaths in 2015. Further, PAD has not undermined good end-of-life-care, another slippery slope fear. In actual fact, Oregon is among the national leaders in providing good palliative and hospice care.

But although Oregon proves that the slippery slope argument against laws modeled on the Death with Dignity Act is invalid, reports from Belgium and the Netherlands are worrisome. In those countries PAD and active euthanasia occur at 10 times the rate in Oregon. What I find most disturbing is the way Belgium and the Netherlands have extended the practice beyond the terminally ill to include people described as "tired of living" and to others suffering from otherwise non-terminal psychiatric ailments.

If you're interested in PAD and the potential validity of the slippery slope concern, please read Rachel Aviv's brilliant New Yorker article from last year - "The Death Treatment," in which she tells the story of Godelieva De Troyer:

Godelieva De Troyer

At 64, De Troyer had recently been abandoned by a boyfriend and was feeling distant from her son. She sought out Dr. Wim Distelmans, an oncologist and professor of palliative medicine (!). Distelmans, who is apparently revered in Belgium for his support for euthanasia, cuts a handsome and charismatic figure:

Wim Distelmans

De Troyer had lived a roller coaster life. Her emotional states ranged from ebullience when her relationships were fulfilling to painful despair when her important attachments were disrupted. But given the clear history of relatedness during her adult life, I would wager that virtually all experienced psychiatrists in the U.S. would have seen De Troyer's wish for death when she met with Distelmans as a transient symptom, not an autonomous choice.

Rachel Aviv was able to interview Distelmans. Here's a crucial paragraph from her article:

Distelmans told me that he had no doubts about the way he handled Godelieva’s case. He explained that she was “a very nice person, a very warm person,” and that she had “wanted to do one decent thing in her life, and that is to die in a decent way, because the rest of her life was such a horrible mess.” When I asked if he worried about transference—perhaps she had idolized him or depended too much on his opinion—he laughed and said, “I’ve never met a patient who is willing to die to please someone else.”

I'd make the further wager that most experienced therapists in the U.S. would share Aviv's speculation that a "transference" was at work. And Distelmans's statement that no one is willing to die to please someone else is sheer nonsense. If we needed more proof than "psychological autopsies" conducted after suicides provide, just think of the suicide bombers who blow themselves up with heroic martyrdom as one of their motives.

Washington (2009), Vermont (2009) and California (2016), the three additional states that have passed "Death with Dignity" laws, all follow Oregon by limiting the procedure to patients with terminal conditions from which they are expected to die within 6 months. The slippery slope argument holds no water against that approach. But advocates for similar laws in other states should recognize that there appear to be real slippery slopes across the Atlantic, and must explain clearly the difference between Belgium and the Netherlands and what Oregon, Washington, Vermont and California have done.

(I've never met Rachel Aviv, but I've written about her superb work here and here.) 

All Physicians Should be Doing Palliative Care

Here's a condensed version of a recent conversation I had with a family member:

My family member: The hospital recommended that X should have palliative care. What is palliative care?
Me: Palliative care is a specialty that focuses on symptoms - helping people suffer less and feel better. It's for people who have serious ailments. Its aim is to improve the quality of life for patients and families.
My family member: I'm confused. Isn't that what every doctor is supposed to be doing?

The question pointed to a real problem. Helping people suffer less and feel better is indeed what every doctor who cares for patients is supposed to be doing. So even though I'm a fan of palliative care, we have to ask: why does it exist?

In my view, palliative care exists for three reasons - one good and two bad.

The good reason is that we've developed a lot of knowledge about controlling symptoms and improving quality of life, ranging from medicines and devices to psychological techniques to judicious use of community resources. Orchestrating all of these often requires a skill set beyond that of primary care physicians and subspecialists. Thus the emergence of a new specialty.

Bad reason #1 is the ethos of U.S. health care. It's displayed when we physicians, coming to the end of our potentially curative interventions, say "there's nothing more I can do for you." We should know better! 2,500 years ago Hippocrates taught us that our role was to:

One of my medical heroes is a clinician/basic scientist who cared for a dear friend of mine who had an incurable cancer. My friend came for an appointment after the last known treatment had failed. The physician said, "X, the best thing I can do for you now is to give you a hug." That's what he did. When I met the physician some years later and told him how much I admired him, he thanked me and immediately asked after my friend's spouse. Palliative care was part of what this physician expected of himself! I picture Hippocrates smiling and saying "you got it right."

Bad reason # 2 is time. When physicians ask each other about the most meaningful moments in our clinical careers, the stories are often about palliation - making contact, relieving suffering, bringing comfort. But the way we have structured medical roles makes it very difficult to spend the time required for giving good palliative attention. Rather than finding ways to make more humane practice possible, we've created the specialty of palliative care.

I have regular contact with primary care residents, and over the years a number have chosen further training in palliative care. It's not that they've turned against primary care - it's that they concluded that palliative care was the best way for them to practice medicine as they hoped to when they went to medical school. This is also why some physicians in practice choose the "concierge" format, in which they limit the size of their practice and make up for lost income by charging a fee for "belonging" to the practice.

But my belief that when we physicians care for patients we should all be doing palliative care isn't, alas, practical in 2016. I ended the dialogue by saying - "In principle you're right - every doctor should be doing that. But it isn't happening. Palliative care is a great idea for X. Go for it!"

Dreams of the Dying

A fascinating New York Times article about the dreams of people who are close to death brought to my attention a study of end of life dreams and visions carried out by clinicians at a Cheektowaga (a suburb of Buffalo) hospice and published in the Journal of Palliative Medicine.

The researchers systematically followed 66 hospice patients to ask them on a daily basis about dreams and visions. 87% reported having these experiences. The majority were comforting. The brief summaries cited in the article are moving.

28 days before his death, Barry (age 88) dreamt of driving somewhere unknown and was comforted by hearing his mother say, ‘‘It’s all right. You’re a good boy. I love you.’’ 

4 days before his death, Roger (age 73) dreamt about his best friend from childhood and saw him running out of the house with his glove and bat while laughing. They had shared a love of baseball throughout life. 

37 days before her death, Barbara (age 52) dreamt of her deceased father and brothers, hugging her and ‘‘welcoming her to the dead.’’ They seemed to be preparing to go somewhere but ‘‘they haven’t said’’ where.

The researchers conclude:

The results of this study suggest that a person’s fear of death often diminishes as a direct result of ELDVs, and what arises is a new insight into mortality. The emotional impact is so frequently positive, comforting, and paradoxically life affirming; the individual is physically dying, but their emotional and spiritual identity remains present as manifested by dreams/visions. In this way, ELDVs do not deny death, but in fact, transcend the dying experience, and present a therapeutic opportunity for clinicians to assist patients and their families in the transition from life to death, thereby providing comfort and closure.

But the researchers tell us that despite the commonness and value of such experiences, patients, families, and clinicians report being reluctant to openly discuss end of life dreams and visions for fear of ridicule and doubts concerning medical legitimacy. This is the downside of our hyper scientific approach to health care. Apart from the constraints of time that plague medical practice, young physicians I have worked with report that although dealing with spiritual/existential matters like end of life dreams and visions seems enormously valuable for both patients and physicians, they don't feel  they have developed the skills and depth of understanding that is required.

Years ago, when I taught medical students at the Howard University clinic in Washington, DC, many of our patients came from the rural South. I was impressed with how often they reported visions of a dead family member. As we listened to these experiences, it was clear that the patients were not hallucinating or experiencing psychosis. The exchanges they reported - like the dreams of the patients near death - were meaningful to them, and to us. And towards the end of his life, when I was visiting my three-times widowed father in Florida, he told me that he was expecting a "visit" from his own father, who came to him in dreams every year or two, in a way that gave comfort and joy.

The study I've summarized is potentially very influential. By making such personal experiences the focus of scientific study they bring what might be seen as solely the spiritual matters for pastors to deal with or psychopathology to be treated by psychiatrists within the orbit of what clinicians can listen to, work with, and learn from.

How to Deal with Controversy over Physician Assisted Death

We in the U.S. are not skilled at resolving controversy. We're vulnerable to demonizing those who hold different views on issues that matter a lot to us. Polarizations like "pro life" vs "pro choice" harden into rigid convictions. Physician assisted death (PAD - sometimes referred to as "physician assisted suicide") could fall into the same intractable trap. The American Association of Hospice and Palliative Medicine (AAHPM) teaches us how to approach the issue in a morally mature manner.

With regard to whether it is ethically acceptable for a physician in a state that allows physician assisted death (currently Oregon, Washington, Montana, Vermont and California) to prescribe a potentially lethal medication for a terminally ill patient that the patient can use if he chooses, the AAHPM believes, as I do, that "sincere, compassionate, morally conscientious individuals stand on either side of [the] debate." That's the opposite of demonization. This crucial recognition leads the Association to take what it calls "a position of 'studied neutrality' on the subject of whether PAD should be legally regulated or prohibited."

Physicians who support PAD will be disappointed that the Association does not endorse it. Physicians who oppose PAD will be disappointed that the Association does not oppose it. What the Association chose to do was to tell its members and society itself how patients can best be cared for if and when PAD is legal. Here's the essence of their view, quoted - with slight modification - from the AAHPM policy statement:

• The permissibility of PAD is dependent upon access to excellent palliative care. No patient should be indirectly coerced to hasten his death because he lacks the best possible medical and palliative care.
• Requests for PAD emanate from a patient with full decision-making capacity.
• All reasonable alternatives to PAD have been considered and implemented if acceptable to the patient.
• The request is voluntary. Safeguards should focus in particular on protection of vulnerable groups including the elderly, frail, poor, or physically and/or mentally handicapped. Coercive influences from family or financial pressure from payors cannot be allowed to play any role.
• The practitioner is willing to participate in  PAD, never being pressured to act against his own conscience if asked to assist a patient in dying.
• The most essential response to the request for PAD...is to attempt to clearly understand the request, to intensify palliative care treatments with the intent to relieve suffering, and to search with the patient for mutually acceptable approaches without violating any party's fundamental values.

The AAHPM has provided admirable ethical and clinical guidance. "Studied neutrality" reflects moral wisdom, not wishy-washy waffling. AAHPM is doing what a professional association does at its best - offering clear guidance to members, the medical profession as a whole, and to wider society.

How Long Should We Live?

Spending Thanksgiving with my two sons/daughters-in-law and five grandchildren made me more aware than usual about the generations, the passage of time, and mortality. Those musings led me to look at a post I'd written for the (now discontinued) Over 65 blog. I'm republishing that post followed by some further reflections:

Why I Hope Not to Die at 75
Posted on Friday, September 26th, 2014 at 8:00 am.By James Sabin
I feel uniquely qualified to comment on Zeke Emanuel’s much-discussed article “Why I Hope to Die at 75.” I’m smack in the middle of the year he hopes will be his last. In addition, many years ago I wrote a book about health care organizational ethics with him (and Steven Pearson). I loved working with Zeke and admire the creative work he’s done on medical ethics and health policy.

Zeke says, correctly, that with limited exceptions, as we pass beyond 75 we typically lose physical and mental capacities, with the result, in his view, that “by 75, creativity, originality, and productivity are pretty much gone for the vast, vast majority of us, resulting in diminished productivity.” Although Zeke recognizes that we “accommodate [to] our physical and mental limitations” by diminishing our expectations and “restrict[ing] activities and projects, to ensure we can fulfill them,” at 57, he is horrified by the vision of diminution.

In Zeke’s view, to be remembered “framed not by our vivacity but by our frailty is the ultimate tragedy.” If a patient said this to me, I’d respond, “We can understand that losing vivacity and becoming frail is sad, but how can we understand why being remembered that way is ‘the ultimate tragedy’ for you?” Over the years, with patients who didn’t want to live beyond a particular age, we virtually always found highly personal fears underlying their picture of what the age meant.

We 75ers know from experience that Zeke has the facts right. I’ve experienced most of the changes he attributes to the age. But as is the case even for people who experience vastly more severe challenges than diminished aerobic capacity and declining productivity, most of us ferret out opportunities to contribute to the world and derive satisfaction. Many posts on Over 65 speak to this effort.

Zeke’s facts may be right, but what about the values he espouses? If Zeke were 17 his article would read as the exuberant outpourings of a brilliant adolescent. But he’s not 17 – he’s one of the leading bioethicists and policy experts in the world. As a result, rather than being understood for what he’s doing – presenting an unflattering view of himself in order to provoke thought in others, the Twitterati see him as telling others what values they should adopt. Even more foolishly, some claim that his highly idiosyncratic perspective, which I believe he will ultimately come to see as misguided, proves the truth of the “death panel” lie.

Many readers of Over 65 will agree with Zeke’s critique of American culture as too focused on the duration of life and too inattentive to the purposes of our lives. He calls this cultural type the “American Immortal.” But very few are likely to emulate his prediction that even if he is in excellent health at 75 he will decline all medical interventions except for relief of pain. No flu shots. No antibiotics for pneumonia.

If that view holds for the next 18 years, which I doubt will happen, I hope that when Zeke declines a flu shot or an antibiotic for a treatable infection his physician will be guided by “Four Models of the physician-patient relationship,” an article Zeke wrote in 1992 with his then-wife Linda. Here’s how they described the “deliberative model”:

“The aim of the physician-patient interaction [under the deliberative model] is to help the patient determine and choose the best health-related values that can be realized in the clinical situation . . . The physician’s objectives include suggesting why certain health-related values are more worthy and should be aspired to . . .” (emphasis added)

The values Zeke anticipates applying are not “the best health-related values” for a healthy 75 year old. It is not “worthy” to invite healthy life to end sooner than need be out of fear that we will be remembered as a frail elder, not as a vigorous youngster. That would be neurosis, not wisdom.

I mentioned above that I had the privilege of working on a project and writing a book with Zeke. I understood him to be a warm-hearted person and a gifted teacher who evinced respect and affection for a wide range of humanity quite independently of whether they were “creative” and “productive.” I believe the article he is being roundly attacked for is actually a gift. Zeke wants us to think seriously about what we value in life. By presenting views that many have found repugnant, and that I see as understandable but wrong, he’s achieving his purpose of provoking thought and discussion.

Zeke gives himself an out in the final paragraph of his long (5,000 words) article: “I retain the right to change my mind and offer a vigorous and reasoned defense of living as long as possible.” (I trust by that he means “as long as possible” in a state in which he can appreciate life and respond to others in a meaningful way.) I’m prepared to bet that when Zeke turns 75 he will no longer regard youthful vigor and stunning productivity as the only values worth living for. If I’m alive, I’ll look forward to his contributions to Over 65 when he hits that birthday in 18 years!

This morning the New York Times carried an article on "Mothering my Dying Friend." The author - Catherine Newman - presents a powerful picture of what it was like to care for her best friend who was dying of ovarian cancer at 47. It's an excellent piece. If you want to read about the experience of (a) caring or (b) dying, follow the link.

I focused on (b). To me, Zeke Emanuel's wish to die at 75 in order to avoid the waning of intellectual and physical energy, seems more like a younger man's phobia about vulnerability than wise thinking about life. But I agree with Zeke that it's important for us to think about how we want to handle aging, illness and death before trouble hits the fan.

I know from many conversations with friends in their 70s and 80s that a majority wish for a more rapid demise than Catherine Newman's friend experienced. Physician assisted suicide is the most talked about approach to hastening death, but VSED, ("voluntary stopping eating and drinking") is a more common practice. When we're close to the end of our lives, we typically experience less hunger and thirst. While some clinicians and facilities are reluctant to honor a patient's decision to stop eating and drinking, there's a strong emerging trend in law and ethics to honor VSED when chosen by competent adults, as evidenced by the strong recommendation made in a recent review of literature on the topic:

...we think that the issue of suicide, euthanasia and hastened death should not be regarded as a last resort option. They have to be discussed early with the affected persons and not in the last days of life. If options of prematurely ending one’s life are known beforehand, VSED is an expression of autonomy and control, and therefore a sign of the patient’s competence. 

Thinking about mortality over this holiday weekend led me to add a codicil to my advance directive. In an aging society, clinicians, health care organizations, and the wider public, need to reflect of values and policies. I'll be writing more about the topic in the future.

Learning about end-of-life care

The "death panel" frenzy propounded by Sarah Palin and an army of uninformed and ill-intentioned allies when the administration proposed paying physicians for conversations with their patients about end-of-life care has come to a quiet conclusion.

Medicare  has finally authorized payment for advanced care planning "at the discretion of the beneficiary" in both the outpatient and hospital setting. These discussions require sensitivity, thoughtfulness, and time. Medicare will pay $86 for the first 30 minutes and up to $75 more for 30 additional minutes. The fee is far from lucrative when overhead costs for maintaining an office are taken into consideration, but it recognizes and compensates physicians for a core medical responsibility - collaborating with patients at every phase of life.

The moral of this happy story is that although it took six years, it shows that we are capable of moving beyond disinformation and hysteria and understanding what caring medical practice requires!

(For previous posts about "death panels" see here, here, here and here.)