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 outpouring 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.

Priests and Physicians who betray their trust

If you’re a moviegoer, don’t miss Spotlight, which opened earlier this month. It tells the story of the Boston Globe investigative team that broke the story about sexual abuse of children by priests. For Bostonian’s it’s a must-see. But it’s such a well-acted, well-directed film that even those with no interest in Boston or priestly behavior should find it engaging.

Sexual abuse of children is and should be a crime, whoever perpetrates it. But the story of priests who betray their calling sheds light on the most-read topic on this blog: doctor-patient sex. The further back in time we go, the more overlap we see between medicine and religion. Jesus, Muhammad and Buddha all healed sickness as well as sin. In every religion priesthood is a calling. The priest is literally called by God. I think of health care as a secular calling to which practitioners may be “called” by fidelity to our common humanity.

Spotlight shows how, priests, like physicians (especially psychiatrists), are the object of transference, that can endow them with enormous power in the eyes of their congregants/patients. When that transferential power is combined with recurrent private contact – whether in the church or the consulting room – we have the potential for great benefit or great betrayal. For too-many priests, the combination of sexual temptation in the presence of parishioners who idealized them was a devil’s brew.

For Catholic priests, celibacy adds an additional risk factor. Dylan Thomas nailed the challenge the young priest must contend with:

The force that through the green fuse drives the flower

Drives my green age: that blasts the roots of trees

Is my destroyer.

And I am dumb to tell the crooked rose

My youth is bent by the same wintry fever.

Spotlight dramatizes that while individual priests sinned, the system of the church protected them and neglected their victims by moving the offending priests from parish to parish. It required a diligent and courageous reportorial team to blow past the cover-up. Psychiatrists who betrayed their profession and exploited patients were not protected to the same extent, but it required the brave feminists who outed the offending physicians to stem the psychiatric abuse that was more prevalent in the 1960s and 1970s.

In an especially powerful moment, Spotlight shows a reporter speaking with Father Ronald Paquin. In a strangely dissociated manner, Father Paquin acknowledges that he “played around” with children, but never “raped” them and did not “gratify” himself, as if these claims exonerated him. Self-delusion is a powerful human capacity, and perpetrators frequently find ways to “justify” their actions. Last month Father Paquin, now 72, was released from prison. (For an earlier story, see here.)

It’s comforting to the rest of us to dismiss offending priests and physicians as bad apples. But that excuses us from our own responsibilities for governing the professions of priesthood and medicine. When the bystanders wanted to stone the woman taken in adultery, Jesus rebuked them: “He that is without sin among you, let him cast a stone at her.” Believers and atheists should agree that this was a true teaching.

Walking Meditation and Health Care Ethics

Health care can be frantic. Emergency rooms, intensive care units, and surgical suites are obviously high paced, but so is "ordinary" hospital and outpatient care. In my busy days of practice I sometimes had 18 appointments in 10 hours. It's not surprising that clinicians report high levels of tension.

Tension can sharpen our focus, but when it's sustained over time it can lead to irritability and distraction. These create hazards to patient safety and contribute to burnout. That kind of tension is bad.

Insofar as the conditions of practice can be modified to reduce tension, doing what's needed and possible should obviously be done. But clinical practice inevitably brings tension. For our own sake and for the sake of our patients, we need to develop ways to chill out. As the late Ken Schwartz wrote in "A Patient's Story," "...in a high-volume setting, the high-pressure atmosphere tends to stifle a caregiver’s inherent compassion and humanity." To be truly effective caretakers, we need to cherish our capacity for "compassion and humanity"!

For some, meditation is a tremendously valuable tool!

Unfortunately, meditation is often thought of as a touchy-feely matter of sitting in an uncomfortable lotus position and chanting mantras. That view confuses external practice with the internal objective. If meditation is taken to mean sitting in a quiet space for 20 minutes or more to carry out the practice, not many health professionals will make use of it.

That's where walking meditation comes in. In hospitals, doctors and nurses typically walk a few miles - in short bursts - during a shift. In my outpatient practice I often walked from my office to classrooms where I taught and to meetings at the nearby hospitals. I could even take a few paces in the office between appointments. I tried to use these interludes as opportunities for meditation.

There are excellent on line guides to walking meditation. (See here, here and here for examples.) But no approach fits everyone. I found that the excellent descriptions of how to focus on body sensation and the experience of walking didn't work for me. My mind kept wandering to matters I was fretting about. That got me riled up, not settled down.

I recently found a technique that works well for me. I like to look around as I walk. Here's what I learned to do:

1. Breathe in, and, at the same time focus my eyes on some aspect of the external world, as by saying "look at the trees," or "look at the clouds," or "look at the people."
2. As in all forms of meditation, the aim is to experience the trees, clouds, people passing by, or some other focus, not to think about them.
3. I found that for my obsessional nature, it helped to say numbers sequentially as I breathed out - one number for each cycle. That seems to help me stay with the experience rather than drifting off into ruminations. I also like to keep track of how long I can sustain the process before my mind gets filled with trivia.

I present my experience to make the point that it's kosher to develop an approach that works for us. Gurus can be helpful teachers, but the wise ones don't look for slavish followers. If walking meditation clicks for a person it can fit into the interstices of the day. Parents give children a "time out" for the child to regain some composure. Walking meditation has potential for potentially stressed out health professionals to create mini "time outs" for ourselves. When it works it serves us and our patients well! That's good ethics!

The Invisible Hand Slaps Valeant Pharmaceuticals and the Sequoia Fund

Over the years I've been a staunch critic of seeing the health care "industry" as a commodity that should be governed by market forces. But fairness and honesty compel acknowledgement when the invisible hand acts wisely and supports good ethics.

Today the New York Times reported that two of the five independent directors of the Sequoia Fund resigned in protest over the Fund's decision to increase its already large stake in Valeant Pharmaceuticals, a company whose entirely legal but ethically disgraceful business strategy is to buy drugs and impose huge price increases. When Valeant's business practices hit the front page its stock fell from $260 to $75, and Sequoia's shares fell 22%.

Here's what David Poppe, president of the firm that manages the Sequoia Fund, said about Valeant: "...we thought Valeant was aggressive but stayed within the lines. To say they're immoral is pretty strong."

Sometimes statements that are "pretty strong" are also "pretty true." Let's hope that the lesson the market is sending about exploitative pharmaceutical business practices is widely heard. So far the invisible hand has been dealing out slaps. Next time - the fist!

Vietnam, Iraq, and Health Care Organizational Ethics

Vietnam was the shaping experience for my generation. In the later 1960s, all male physicians who were not conscientious objectors did some form of military service. I opposed the war in Vietnam and was active in anti-war demonstrations, but the law did not allow selective conscientious objection. To claim CO status one had to oppose all war, and the memory of World War II - which I regarded as a "just war" - was still fresh.

When I completed psychiatry training in 1968, I had the good luck of being an officer in the Public Health Service for two years at the National Institute of Mental Health. The "real" military who were stationed in the area dismissed us as "yellow berets." But notwithstanding the insult, I was proud of being an Public Health officer.

This past winter, when my wife and I were part of the faculty in the Semester at Sea program, we visited Vietnam for 6 days. That powerful experience led me to read six excellent books about our wars there and in Iraq:

• The Things They Carried (Tim O'Brien)
• Matterhorn and What it is Like to Go to War (Karl Marlantes)
• A Rumor of War (Philip Caputo)
• The Good Soldiers and Thank You for Your Service (David Finkel)

All six books were terrific. I recommend any and all to readers who want to know more about what the war experience was like for our military. But for this blog, I want to describe three "lessons" I took from the books about the ethics of health care organizations:

1. The culture of the unit (squad, platoon & company) has enormous influence on the ethics of the unit's behavior. The military has a deeply held commitment to taking care of its wounded and dead. Soldiers risked their lives to act on this value. And, in the opposite direction, Philip Caputo described a massacre-like event carried out by the unit he was leading when he, and his men, were engulfed by hatred for the opposing soldiers. Unit culture could lead ordinary men to become heroes or monsters.
   
   In health care organizations we should recruit staff who - whatever other skills and talents they have - are caring people. But we need to pay careful attention to building and sustaining a culture of care. Good people can do bad things when the culture they are in points in the wrong direction.
   
2. In all of the books it was strikingly clear that the behavior of leaders had a profound influence on the ethical performance of the individuals in the unit. When the leaders were models of admirable conduct, the soldiers were more ethically admirable in their own front-line conduct. When the leaders elicited cynicism, bad things ensued. In Matterhorn there's a scary incident in which a soldier actually tries to kill the commander.
   
3. Being in a war shapes soldiers, both for better and worse. Retired General Peter Chiarelli (described in David Finkel's books) was so moved by what he learned about traumatic brain injury, post-traumatic stress, and suicide among veterans, that in his retirement from the military he is devoting himself to suicide prevention. In health care we're not literally in combat, but there are "war-like" experiences in fighting for the health of individual patients. More of us need to emulate General Chiarelli and move from immersive front-line experience to advocacy for social justice and societal benefit. (See here and here for stories about General Chiarelli.)

I've been critical of the ubiquitous use of war metaphors as seen in obituaries that describe the deceased person's "heroic fight with cancer/heart disease...." When physicians feel that death is their mortal enemy they are at risk for overtreating patients. Over the years I've heard students use the term "flogging," as in "the oncologists are flogging the patient again with another treatment that will just make him sicker..." But there are other aspects of war that model what we should strive for in health care: ethical leadership, a culture of caring, and experience-based advocacy.

Professional Societies and Stewardship in Health Care

Three imaging specialists from Johns Hopkins published a short but VERY important article - "Medical-Imaging Stewardship in the Accountable Care Era" - in the October 29 issue of the New England Journal of Medicine. (Unfortunately, the article is available free only to subscribers.)

The authors are leaders in imaging at Johns Hopkins. In their eminently practical article, they recommend that hospitals and medical groups designate internal experts to set standards for "appropriate" use of imaging studies. CT, MRI and other technologies are, arguably, the most important diagnostic advances in the last 25 years. When used "appropriately" they are the source of enormous benefit. When used "inappropriately" they are the source of high costs without concomitant benefit, and sometimes cause harm when incidental findings lead to unneeded biopsies or other interventions.

I put the word "appropriate" into quotes because in health management jargon it's used as if it's a statement of fact. In reality, it's a contestable judgment about value. The term, like its cousin "medical necessity," allows the health system and political leaders to pretend that we're just dealing with science, and not making value judgments about interventions and resource allocation.

Many health insurers have turned to radiology benefit management companies to oversee the use of imaging services. When this function is carried out well it applies evidence-based criteria to the ordering process and offers educational services to the clinicians whose orders they are reviewing. However, no matter how well the external review process is conducted, an unavoidable "us versus them" dynamic often emerges. In principle, self-management within a hospital or medical group is a preferable approach. Put simply, if it's good clinical care and "appropriate" resource allocation, we clinicians should be doing it ourselves, and not require external "disciplinarians" to enforce good practice.

What I just said is not a critique of radiology benefit management companies, but, rather, a reflection on a structural dynamic. In growing up, when we start to do the "right thing" on our own rather than depending on our parents to guide us, we're carrying out the same actions but in a more mature manner. That's what we should be doing as clinicians in our medical practices!

In "Medical-Imaging Stewardship in the Accountable Care Era," the authors are illustrating the kind of leadership professional societies and leaders within a profession can provide. Evidence based use of imaging and "appropriate" resource allocation are what we should be doing because it's the right way to provide health care. A true profession doesn't require or want health insurers to take responsibility for these core elements of professionalism.

The medical profession hated managed care when it emerged in the 1980s and 1990s. But if we had been managing ourselves in a clinically and socially responsible manner, external review would not have been needed. We left a vacuum. External entities then filled it.

Two teaching cases about unneeded MRIs

Readers who teach may find these two cases useful. But I think they'll be interesting for most thoughtful adults. 

CASE I.  Many years ago I wrote a hypothetical case for a session on rationing for medical students.

Tension Headache

You are a primary care physician at a not-for-profit health maintenance organization (HMO) that serves 500,000 members, paid for by capitation, a monthly premium paid to the HMO by the members’ employer, Medicaid, or Medicare. The premium revenues create a budget to care for the entire HMO population. 

Susan Jackson, a 28 year old office worker, consults you about headaches. For the past month she has had frequent headaches at the end of the work day. The headaches are much less frequent on the weekends. She describes the headaches as a dull, mild to moderate pain, that feels like tightness or a band around her head. She is otherwise healthy. Her neurological examination is normal. She identifies clear stressors at work.

You explain that this is a classical pattern for tension-type headaches and give practical advice on what to do. You predict that the headaches will improve as Susan learns to master the stressors and to build more relaxation into her day. Susan thanks you, but says that a friend who had headaches received an MRI, which showed a tumor that required surgery. With some urgency she says “unless you can guarantee that there is no possibility whatsoever that I have a tumor, I want an MRI. What harm can an MRI do?”

You know that the likelihood of a tumor is vanishingly low, and that established standards of care do not recommend imaging studies in a situation like Susan’s. There is no medical contraindication to getting an MRI, but you know that it would cost between $1500 - $2000, which would come out of the budget for the HMO population. You reflect on what to do, and how to explain your thinking about the MRI to Susan.

CASE II. Today I read the following case on the excellent "Costs of Care" blog:

Doc, I need an MRI

By Patricia Czapp, MD

“Doc, I need an MRI for my back.”

I recognized the voice immediately and turned to greet one of my favorite patients, Mr. P. There he was, smiling, leaning on his walker.

Mr. P visits me several times a day in my primary care office that is essentially in his living room.  The practice itself, sized fewer than 1,000 square feet, is on the first floor of a high-rise apartment building that houses disabled and low-income adults.

My team and I provide primary care to the residents of the building  (a public housing unit) and the surrounding community, a diverse population that has in common these characteristics:  social isolation, low health literacy and low general literacy, a high prevalence of behavioral health problems, and limited transportation.

We came to practice in the building because our health system, Anne Arundel Medical Center, several years ago noted a high number of ED visits from individuals of one address. We visited the address to meet the residents of the building and their landlord, the local housing authority.

We found a population of individuals who were aged beyond their years, suffering from preventable complications of chronic disease and for whom a visit to the hospital met medical as well as nonmedical needs…individuals like Mr. P.

Mr. P is a man living a marginalized existence. He thrives when people take the time to listen to him, touch him, and show him that they care. For many decades , he found this comfort in the ED. When his landlord agreed to try an experiment with us, we came to practice in his building.  Mr. P was one of our earliest patients.

We provide a low-cost alternative to meet his needs and do so with kindness, tolerance and generosity.

“What happened to your back, Mr. P?” I asked.  “Did you fall or hurt yourself”?
“No Doctor, I Just woke up, got out of bed and it hurt real bad for a while.  I could hardly stand up. ”

Rather than lecture him about the lack of medical necessity for an MRI, I accompany him to his modest apartment where we review the condition of his bed and mattress and suggest alternative ways to use pillows to support his back.   Mr. P beams, “Thank you so much.”  And then shuffles toward the Community Room.

If we had not been there to intercept Mr. P, he would have dialed 911. It shocks many to learn that individuals use the ED for nonmedical needs. But for some, this is the only way they feel human.

Our practice has been open for two years. In that time, we have experienced a significant decrease in medical 911 calls, ED visits, admissions and readmissions of residents of the apartment building. They have an alternative now to the ED, and we meet their social needs in their living room – one visit at a time, sometimes multiple times a day…
“Doc, I need a CT scan for my head.”
___________________________________________________________________
Patricia Czapp, MD was contestant of  “The Best Care, The lowest cost: one idea at a time” – a collaboration between Costs of Care, Healthcare Financial Management Association, Strata Decision Technologies, and Yale-New Haven Health.

"Tension headache" works well with medical students and residents. It ends with a resource allocation dilemma. Ms. Jackson wants a guarantee of absolute certainty, which is virtually never possible. The MRI is not required for good clinical care, but if  it cost $15-$20, not $1,500-$2,000, should it be covered because of her understandable anxiety? And, however one thinks through the dilemma, what should the primary care physician actually say to Ms. Jackson?

The second case is a beautiful example of ministering to one's patient - clinical practice as a calling. It's invites learning about "hotspotting" - meeting the real needs of people who are "overutilizing" expensive medical care. Mr. P was suffering, but ED visits were not the best pathway to relief. Dr. Czapp's remarkable practice has the potential to reduce costs even as it provides vastly better care for the population she serves.

Political candidates continue to bash their opponents by accusing them of health care rationing. Cases like these allow us to understand how cost reduction and frank rationing can be conducted in an ethically admirable, clinically sound manner.