Does That Come With Fries?

Atul Gawande has seen medicine's future and its name is, uh, the Cheesecake Factory?

Indeed, the restaurant chain is where Gawande finds his model for the "best prospect for change."

From Gawande’s story “Big Med” in the August 13&20 New Yorker:

“Those of us who work in the health-care chains will have to contend with new protocols and technology rollouts every six months, supervisors and project managers, and detailed metrics on our performance. Patients won’t just look for the best specialist anymore; they’ll look for the best system. Nurses and doctors will have to get used to delivering care in which our own convenience counts for less and the patients’ experience counts for more. We’ll also have to figure out how to reward people for taking the time and expense to teach the next generations of clinicians. All this will be an enormous upheaval, but it’s long overdue, and many people recognize that.” 

Read more http://www.newyorker.com/reporting/2012/08/13/120813fa_fact_gawande#ixzz23htqApdo

Also, Gawande participates in a live chat on Big Medicine at noon today: 

http://www.newyorker.com/online/blogs/ask/2012/08/live-chat-atul-gawande-on-big-medicine.html

Tattoos, Hospice Nurses & Competing Wolves

I’m just discovering the blog at hospicediary.org, written by Amy Getter, a hospice nurse in Seattle. I was drawn to it by her Twitter exchange with physician Alex Smith following his blog post at GeriPal.org.

Smith writes about people getting DNR chest tattoos -- to make as unmistakable as possible their wishes against resuscitation measures. The advance directive could not be clearer, it would seem, or more certain to accompany the person, than when indelibly imprinted upon one’s chest.

In response, Getter tweeted: “I know a woman who attempted suicide and wrote no code on her chest, she was resuscitated anyway when found. Who decides?” 

“Who decides?” is a timely question, in light of recent consideration in JAMA and elsewhere of whether CPR, so rarely successful and so often brutal, should cease to be automatic.

Hospice nurses have a unique perspective into contemporary quandaries in end of life care, and so I was glad to discover her blog. Getter blogs insightfully and compassionately about the realities of caring for the dying at hospicediary.org.

I was rewarded with this gem:

An old Cherokee, teaching his grandson about life, said: "A fight is going on inside me, It is a terrible fight and it is between two wolves. One is evil -- he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority and ego. The other is good -- he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith. The same fight is going on inside you and inside every other person too.”

The grandson asked in reply: “Which of the two wolves will win?"

The grandfather answered: "The one you feed."

Overpaying for your hospital stay? Ask questions and get help!

Readers Digest has a special report in the current issue on "Why a Hospital Bill Costs What it Costs."  Kimberly Hiss points out many ways to save money on your health care bills, most of which follow a theme:  Ask Questions -- ask up front, ask about alternatives.

Can I have this done at a surgery center vs. a hospital?

Also, keep track of time actually in surgery. OR's can cost $200/minute, so if your spouse knows you were there for one hour, and the bill comes in for two, you should dispute that bill and save thousands.

Help can be available from many sources:

• http://www.healthcare.gov/law/features/rights/consumer-assistance-program 
• in your state http://www.healthcare.gov/using-insurance/managing/consumer-help/index.html
• billadvocates.com helps patients deal with overcharges
• http://patientadvocate.org/ supports people with chronic, life-threatening, or debilitating illness
• advocacyforpatients.org chronic conditions

You, too, can be an informed consumer of health care.

The Racial Divide & Informed Decision-Making

Dr. Joseph Sacco’s piece in the August 7 NY Times Science section makes about as good a case as any I’ve seen or heard that palliative care specialists are almost uniquely qualified to engage the most complex conversations on pain and end-of-life care.

Sacco writes of research findings that "upend the conventional view of preferences for care among blacks. ... What made the difference? Providing patients and their families useful information in plain English, with compassion and clarity, enabling them to make choices in keeping with their desires and beliefs.”

See the full story, a keeper for those passionate about disenfranchised communities and the end-of-life dialogue, here.

The Virtue of Patience With Patients

What do you call a doctor who for decades cares for the destitute, demoralized and demented, patients who often care little for themselves, in a medical anachronism fast giving way to politics and bean counting? You might call her blessed. She probably would.

Welcome to God’s Hotel, Victoria Sweet's loving and powerful story of a San Francisco hospital  where whisky bottles litter the grounds, patients smoke in the halls, "Bad Girls and Bad Boys" find private corners to do private things, and one nurse's shift consists pretty much of knitting blankets. (Don’t underestimate knitting. Sweet doesn’t.)

The list is long of perfectly sound reasons for a mayor or federal department to step in and change the way things are done at Laguna Honda. That they do so, as Sweet eloquently writes in a manner more insightful than wistful, is truly sad.

I was drawn to this book for its combination of medicine and religious faith, and by Sweet's apparent ability to practice both without compromise or apology.

If aspects of the hero archetype apply,  it is fitting. Medicine was a redirection for Sweet, initially drawn toward psychology by Carl Jung, and she can seem a healer from another time -- which, AIDS patients and MRIs notwithstanding, she sort of is. While practicing medicine at Laguna Honda at the close of the 20th Century and start of the 21st, Sweet worked on a doctorate in medical history, with a particular emphasis on the 12th Century nun Hildegard of Bingen. Hildegard was a poet and writer of liturgical music. She was also a mystic, a botanist, an influential theologian and a medical practitioner.

Hildegard is no med school icon, and maybe that's as it should be. And yet Sweet places Hildegard within the historic sweep of medicine's evolution, and shines a particularly bright light on the role of time in healing. Along the way, she comes to question accepted contemporary thinking about the doctor-patient relationship.

"I'd accepted the teaching that a good doctor does not get too close to his patient," Sweet writes. "He or she does not jump into the mix, but keeps some distance, watches for the 'counter-transference,' but does not get drawn in. There is much truth in that wisdom passed down by generations of doctors. The Hippocratic physician does not fall in love with his patients, or in hate either. He keeps their secrets no matter how heinous; he does not have dinner with his patients, or buy them presents. He remains 'other' to their lives, their families, their neuroses. It is a good ground rule. For a patient to turn to someone kind but distant, caring but calm, wise but not attached, is important, is necessary. But it requires that the doctor maintain a certain distance, and this means not quite being yourself. ... and it was not something I wanted to give up any longer. I didn't want to reestablish distance; I didn't want to be a Hippocratic physician; with my patients, I wanted to be myself. Whether that was possible for a doctor, I didn't yet know."

Along this path of discovery, time, good food and joy become as important to Sweet's philosophy of healing as any diagnostic tool at her disposal. In comparing then and now -- the centuries of premodern medicine little more than a curiosity in the scientific and technological present -- Sweet seems intent on finding the baby that has been thrown out with the bath water.

Sweet is endlessly forgiving of her patients, and knows them and loves them deeply. Only such a person could perceive a place such as as Laguna Honda in San Francisco, what might have been America's last almshouse, with the affection Sweet shows.

Catholic enough to follow the footsteps in pilgrimmage of a 12th Century nun/healer, Sweet also is Zen enough to sit in the dark with a perplexing patient, agitated and agonized, see this person acting as if poisoned, and find a diagnosis in the act of sitting “like a mental state of knitting.” What had seemed an inexplicable symptom of dementia was in fact a toxic reaction to a cocktail of medications.

Sweet begins regularly to sit with patients, "and something, somehow, would happen. It would become clear what, if anything, was wrong with the patient and what, if anything, I could do about it."

Pain comes in great variety, from the physical to the existential, and Sweet strives to understand and distinguish them. This is a valuable skill, especially with a patient no longer able to communicate what’s wrong in any way but physically.

"The demented men of E6 gave me pause,” Sweet writes. “They weren't all there, and they weren't all not there either. They were demented, but not de-souled or de-spirited. ... I learned a lot about sensibility, feeling and will from those demented men of E6.”

And, she writes, “I wondered how many of those I called Bad Boys and Bad Girls were, in reality, spiritually thirsty and spiritually sick. Perhaps they were the most sensitive, the most easily hurt of all my patients, the most tortured by the human fate of knowing we are going to die."

So forgiving is Sweet that Miss Lester, a nurse as disdainful and distrustful of doctors as she is devoted to her patients, is portrayed as a lost treasure.

"Miss Lester was right to be suspicious of the medical profession,” Sweet writes and reflects on medicine’s centuries-old power struggles. “Ever since the duties of the monk infirmarian had been split between doctor and nurse, and the Latin curare split into cure and care, there'd been a battle going on for control. Who would be in command of the hospital? Doctor or nurse? Whose model  of curare would triumph? Cure or care? And this battle was joined at the French Revolution, when the doctors tried to wrest control of the Hotel-Dieu in Paris from its nursing nuns.”

At Laguna Honda, patients often are victims of their own behavior, and Sweet doesn't sugar-coat this. The patience they require is that of, well, a saint.

Over time, Sweet watches her profession transition from physician to health-care provider. GIven a tour of the new Laguna Honda building, she asks where is the doctors' office? There seems to have been an oversight, and the cost-containment strategy bans new patients but keeps the mayor's PR consultants on the payroll.

Sweet values efficiency, if not in hospital administration, then in her prose. She is a wonderful story teller and gifted at human insight, a nice skill in a writer, even better in a physician.

God's Hotel left me wondering whether an MRI would have shown Dr. Sweet anything more than she learned sitting quietly in the dark with a writhing patient. I wondered, too, whether a caring society can afford NOT to pay a nurse to sit, watch and knit.

And as efficiency came to seem, not a cure, but a disease, I was left with this sad impression:  In caring for the poor and sickly, this apparently isn’t a good time.

"God's Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine," by Victoria Sweet (Riverhead; $27.95).

(This blog post published originally at paulcmclean.wordpress.com)

Who gets what?

I've been thinking about the larger “medical futility” project to which we will soon be returning, and came across Kenneth Feinberg's book on "Who Gets What - Fair Compensation after Tragedy and Financial Upheaval".   Feinberg administered the Agent Orange settlement for Vietnam vets, 9/11 distribution, Gulf oil spill compensation, as well as TARP payments to bailout executives, along with VaTech victims.  So he has a lot of experience with allocating money, all the time under pressure from many sides.  the only thing he could be sure of is that no solution would make everyone happy.   Sometimes tort law and legislated rules tied his hands, and sometimes public expectations / pressure/ politics / public outrage were as important factors as the other factors.

I quickly read through looking for how Feinberg’s insights into who gets what, can help us with the cost aspect of medical futility: who should get what care?

The one aspect of all his deliberations that stood out to me is this:  all his dealings were public, and everyone knew what everybody else was getting.   "People will always count other people's money"

The major difference in health care cost, seems to be the complete opacity of costs -- the general public has simply no idea where the money comes from, and to what destinations it goes.   With health plan co-pays in the $20 range, and emergency room visits at $50, the REAL cost of care -- an xray, medicine, treatments, never mind hospital stays, is completely invisible to most of us.  Those in the businesses dealing with medical billing codes are much more aware, at a transaction level, but they don’t see where the river of money really flows among institutions (government, insurance, hospitals and health plans, taxpayers, caregivers, pharmaceutical, and on and on).

At the lowest transaction level, perhaps many of us would be outraged that the xray that costs $100 in a local clinic runs $2000 in some institution -- who's to know?   Maybe it is $10,000.  Nobody posts prices.  I liken this to going to the gas station without a price sign outside, telling the attendant "fill it up with super!", and perhaps charging $50/gallon gas to my "travel credit card" (I’m not paying, “insurance” is).    If I had any idea the price was $50/gal, I'd drive right past the place.  My point is, most of us don’t know even if it is billed out at $500/gal.   

It seems clear that one important factor in addressing cost, is a high level of transparency that is reflective of Feinberg's balance between stinginess and generousity:  who gets what ?   Do we feel that physicians or surgeons deserve what they are paid (do you know your doctor’s income? how about your health plan administrator)?  it's already clear that good, conscientious nursing assistants are underpaid for what they do.   How can we make up our minds whether it's ethical or supportable (or even forgiveable),  if we don't even know who is getting what ?   THAT's the first thing that's broken about the cost of healthcare: it's completely opaque black box.

If we are to make an ethical determination relating to the cost of health care, (is it just? is it ethical?), one of the essential changes is the transparency of costs: how much does it cost, and where does it go? The cost factor in medical futility, is a piece of this larger societal issue and cannot be separated.

Some other aspects of the “cost” topic might include these other related threads:

Another member of the committee points to the inelasticity of price vs demand/supply in healthcare: right now there is a glut of lobsters in the market: $3.99/lb because the supply is huge.  When the supply dries up next year, prices will be back to $9, $12, $14/lb.  Prices in healthcare related transactions don’t move like that, so those costs don't respond to normal market changes.  

There is also the matter of immediacy:  If you need that appendectomy, you're not likely to quibble on price or shop around.   

Another non-market feature of many healthcare costs seems to be a large gap between the price of a drug or service, and the incremental cost of delivering it (what does it really cost to manufacture one more pill?  trivial!  yet the price doesn't drop no matter what else happens...).   

Finally,  how do we (our society) want to deal with "free riders" ?  Hospitals in border towns that are inundated with patients from neighboring states who are not turned away, but also don't have insurance to pay for their treatments.  Supporting free riders in many parts of the industry, is completely unsustainable.   I'm not suggesting denying services to people who obviously need it, but free riding is a key factor in dealing with the cost of healthcare in general, and more narrowly in medical futility context in particular.   Who is getting what health care for free? Don't fool yourself: "the rest of us" end up paying.

The above are personal observations.

Facts, Fears & Protections of Conscience

A friend  excitedly calls to say that not only does the Affordable Care Act have a section related to physician involvement in, as my friend put it, "death facilitating," but it supports euthanasia and mercy killing.

It's the slippery slope, my friend seems to be saying, written into law.

A few minutes later he calls back, sheepish, and like a latter day Emily Litella, says, "Never mind." He'd reread ACA's Section 1553, and it doesn't say what he thought it said.

The ACA does include policy regarding the practice alternately known as Death With Dignity or Physician-Assisted Suicide. Section 1553 even goes a step further, to include euthanasia and mercy killing.

But the law hardly promotes the practice, and in fact is written as protection against discrimination for physicians who refuse to assist a patient in this way. The ACA gives physicians in Oregon, Washington, Montana and, perhaps next, in Massachusetts, federal backing for having nothing to do with a practice the Community Ethics Committee calls Choosing Medically Induced Death.

The good news for my friend and I is, we caught the mistake and both came away better understanding what the law actually says. Given the nature of the political dialogue regarding ACA, aka "Obamacare," clarity isn't always easy to come by.

The truth of Section 1553 is just as interesting to me: that protection from an assisted suicide law was seen as necessary -- that doctors, nurses and hospitals might need cover, under the Death With Dignity Initiative, when they say no for moral, ethical or other reasons.

Under Subtitle G/Miscellaneous Provisions, ACA's Section 1553 protects physicians, health care professionals and hospitals, et al., from discrimination for refusing to participate in "assisted suicide, euthanasia, or mercy killing." Complaints of discrimination are handled by the Office for Civil Rights in the Department of Health and Human Services.

This type of clause has a name: provider refusal clause, or conscience clause. It also has a history, which I learned about in a blog post by Ann Neumann, a writer (www.otherspoon.blogspot.com), hospice volunteer and editor of TheRevealer.org, a publication of the Center for Religion and Media at New York University.

Such clauses began in 1973, according to Neumann --  in response to the legalization of abortion. "What were once 'protection' of doctors from performing medical services they morally or religiously objected to morphed into 'protection' of entire institutions, like the Catholic church, which is the second largest provider of health care in the U.S.," Neumann wrote.

I hadn't read Neumann's blog in a while, and am glad to rediscover it. She's a wonderful writer, and an astute observer of the volatile intersection of religion and medicine.

Of the conscience clause and its expanding implications for a religion's influence on medical practice, especially for marginalized individuals, Neumann wrote: "Backlash to Roe v. Wade has expanded these federal laws ... to include increased rights of doctors at the detriment of rights for patients. Some do not require referrals — a doctor is not required to give a woman, gay or elder patient a meaningful referral for services — or informed consent — a doctor is not required to tell a woman, gay, or elder patient all of their medical options."

It is interesting that ACA anticipated states going beyond permitting physicians to write lethal prescriptions by including specific language about euthanasia and mercy killing -- as recently occurred via judicial ruling in British Columbia. 

It is also interesting, and maybe ironic, that while the Death With Dignity Initiative in Massachusetts is written to shield physicians from legal repercussions -- going so far as to state that the official cause of death would be attributed to the underlying terminal disease, and not to the lethal dose -- refusing to participate requires a legal protection all its own.

A Community's Perspectives on Assisted Dying

Voters in the Commonwealth of Massachusetts will decide in November whether to legalize the practice alternately referred to as Death With Dignity or Physician Assisted Suicide.

The practice, which gives physicians the legal authority to prescribe lethal doses to competent and otherwise qualified terminal patients, already is the law, by will of voters, in Oregon and Washington state.

The Community Ethics Committee hopes to encourage and inform dialogue among Massachusetts voters with its white paper on the subject, "Choosing Medically Induced Death."


You'll find this report in the box on this blog's home page, under Publications of the CEC. Or, click here.


The title reflects the CEC's attempt to give the practice a description that transcends both the charged term suicide and what some see as the euphemistic Death With Dignity.

We hope to post a summary of this rather lengthy white paper in the near future.

The Language of Ending Life

Art, like morality, consists of drawing the line somewhere.

(G.K. Chesterton)

Andre Picard of The Globe and Mail is one hell of a writer. In a piece considering a British Columbia court’s approval of medical assistance in dying, and the complexities of the language surrounding the issue, Picard wonders just what was decided.

This much seems clear: The court granted to Gloria Taylor, a woman who suffers from ALS, or Lou Gehrig’s disease, the unique, for now, right to end her life at the time of her choosing with the physical assistance of a physician. Meanwhile, the Canadian Supreme Court sometime soon will resolve the case in Ontario of Hassan Rasouli, a minimally conscious man on life support caught in a wrenching moral/ethical quandary in the space between hastening death and prolonging dying. The country to the north is engaging the end-of-life debate in ways that promise illumination.

So what, Picard asks, should the right earned by Gloria Taylor be called?

“Physician-assisted suicide? Physician-enabled death? Physician-hastened death? Euthanasia? Voluntary euthanasia? Rational suicide? Suicide? Mercy killing? State-sanctioned murder? Death with dignity? And there are many more variations, each loaded with legal and moral baggage. The language we choose tends to reflect where we stand on the underlying question of whether grievously and irremediably ill people should have the right to choose to end their lives rather than let an illness take its course.”

Picard’s attempt at divining a fair and accurate term mirrors in many ways the recent struggle by the Community Ethics Committeee in Boston. With the likelihood that Death With Dignity Initiative will be on the Massachusetts ballot in November, the CEC studied and debated the question for months (in the process delaying a report on “medical futility/intractable disputes,” yet another extreme test of language and understanding). In this dicey negotiation of the line between church and state, with respect for democratic process and the values of life and choice, language emerged as central, perhaps determinant, to deciding the appropriateness of the practice.

Among CEC members, there were proponents of the term“death with dignity”; there were proponents (including myself) of “physician-assisted suicide.” We achieved consensus on neither, but settled on “choosing medically induced death.” This, we found, focused attention on two important aspects: autonomous choice and the physician’s role in providing the prescription for the lethal dose. And though as a phrase it won’t roll off anyone’s tongue, or supplant strong attachments to the better-known competition, “choosing medically induced death” most clearly addressed the CEC’s task at hand.

Calling the act of killing oneself something other than suicide can seem euphemistic and unhelpful in understanding what is taking place. And yet Picard makes a strong point, in clear and simple language, when he says “calling medically assisted dying suicide is a lot like calling surgery a knife attack.” Killing the patient is never the purpose of legitimate surgery, but suicide is without question a loaded term.

The right language is literally vital, and so difficult to agree on.

In an earlier CEC study -- of the use of palliative sedation in treating dying patients in intractable pain -- we agreed to make no real distinction among physical, emotional or spiritual pain; pain is pain, we decided. We also became convinced that while deep sedation might in fact hasten death, it also with some frequency allowed organ function to resume and the patient to live longer than expected. The intent was to treat the pain, and causing death was uncertain. We made a distinction between palliative sedation for a terminal patient, and medically induced death.

Learning about Gloria Taylor’s medical and legal ordeal led me to another excellent piece of journalism, by Douglas Todd in the Vancouver Sun. Todd looks insightfully into Taylor’s story and the broader subject of assisted dying. I’ll post more about Todd’s story in a coming blog. (Watch Taylor speak about the decision here.)

The British Columbia ruling goes further than what is proposed for Massachusetts, where an affirmative majority vote of citizens in November 2012 would allow physicians to prescribe a lethal dose -- but not to administer it. The patient, with a prognosis of six months or less to live, would be required to administer the dose.

This with near certainty would leave out an ALS patient such as Gloria Taylor, who by the time she is in her last six months likely will be physically unable to self-administer the lethal dose. Under the British Columbia ruling, apparently, should Taylor take the option, her physician could fully participate.

When Palliative Intent Is Called Into Question

Palliative care and hospice are enormously valuable but widely misunderstood medical practices for patients at end of life.  Central to the misunderstanding is the role of pain medication in the time of death. Palliative physicians can see their care intentions called into question, as a recent study has shown.

In a survey of 663 hospice or palliative physicians, more than half had been accused by patient families or even colleagues of murder, euthanasia or killing within the past five years.

Twenty five of them were formally investigated by their hospital, the state medical board or attorney general. 

None were found guilty.

See the compelling story of one such physician,  the study, and why communication and meticulous note-taking are essential throughout the palliative care process, here.

And  here, see why the Community Ethics Committee found terminal sedation, the treatment most likely to get a palliative physician's intent called into question, to be an ethically justifiable practice. Indeed, the CEC found it to be an important option in the best interests of the patient.

Oregon Studies the Value of Medicaid

“The study put to rest two incorrect arguments that persisted because of an absence of evidence. The first is that Medicaid doesn’t do anything for people, because it’s bad insurance or because the uninsured have other ways of getting care. The second is that Medicaid coverage saves money. It’s up to society to determine whether it’s worth the cost.” 

Don’t miss the NY Times report on Oregon’s insurance/health-care experiment.

Checking into "God's Hotel"

The emergent wonders of medical science can make relatively recent practices seem like relics from the Dark Ages. And yet not all change is for the better.

For Dr. Victoria Sweet, change transformed San Francisco’s Laguna Honda Hospital from “the last almshouse in America” into an “efficient, computerized 21st-century rehabilitation center.” This transformation has educated Dr. Sweet, a proponent of slow medicine, in the “inefficiency of efficiency.”

Dr. Sweet spent twenty years practicing medicine at Laguna Honda, a large facility caring for the  city’s destitute and ill, and has written about this experience in “God’s Hotel: A doctor, a hospital and a pilgrimage to the heart of medicine.”

Reading Dr. Abigail Zuger’s review of “God’s Hotel” has put it on my summer reading list, along with “Writer, M.D.: The best contemporary fiction and nonfiction by doctors” and Kenzaburo O’s “A Personal Matter,” which I recently discovered on a short list of “moral distress in literature,” along with “Huckleberry Finn” and Toni Morrison’s “The Bluest Eye.”

Zuger writes of Laguna Honda: “At one point, almost every county in the nation had a place like it, where patients could live for months, years, as long as it took. These medical back wards, like their psychiatric counterparts, have now evaporated in the name of community-based services: the old Laguna Honda was called the last almshouse in America.” 

Through excerpts, reviews and interviews, “God’s Hotel” has the feel of a companion piece to the compelling, contemporary documentary film “The Waiting Room,” recorded in Oakland’s Highland Hospital. Where “God’s Hotel” documents the way the indigent and ill were treated in a bygone time not so long ago, “The Waiting Room” shows the often dreadful way they are treated now, just across the San Francisco Bay.

There is no longer the money or the time for the kind of humane care that Laguna Honda provided.

“Caring for those who care little for themselves entails immense frustration and wasted time, but time was one thing the doctors had -- time and the medieval medical interventions of regular meals, clean linens, cheerful surroundings and the opportunity for careful observation,” Dr. Zuger writes. “Occasionally a remarkable transformation would result from very little more than those simple things, the miserably self-destructive becoming well and whole.”

What, to Sweet, makes a good doctor? "The good doctor makes the right diagnosis and prescribes the proper treatment. But the better doctor also walks with his patient to the pharmacy. And the best doctor waits in the pharmacy until his patient swallows the medicine."

The Death of Dudley Clendinen

Dudley Clendinen wrote movingly and eloquently about his intent to kill himself before ALS made the act impossible. But he died in a hospice on Wednesday, as a result of the disease, his daughter said, not by his own hand.

He is remembered in the NY Times. 

End-of-Life Algorithm: A Silly Idea?

I tweeted about a blog post the other day titled “Algorithm for End-of-Life Decision-Making.” The post was from Thaddeus Pope, an authoritative voice on the law and medicine, especially as relates to cases of medical futility, or when the care team and patient/family devolve into intractable dispute over the efficacy of treatment. 

Awhile later came a response from a self-described “conservative physician” practicing in a “very blue state.”

“An algorithm?” the physician tweeted. “Silly!”

The doctor is probably right. The idea that complex decisions for the dying might fit a single set of rules, a neat calculation, no doubt is silly. But then the physician “explained” his own process for assessing treatment options: “I seek out the best algorithm I can find in hopes it will tell me what to do.” At which point I diagnosed him as superior, sarcastic, and smugly devaluing of even the attempt to give decision-making at the end of life some cohesive, comprehensible shape. 

Perhaps the doctor’s cynicism is built on years of experience, but I’m guessing he doesn’t run a big city emergency room, attend to many patients sustained mechanically in an ICU, or give much weight to the writing of Atul Gawande.

Gratefully, I found a welcome antidote to that exchange at kevinmd.com, where Dr. Marya Zilberberg argues for models synthesizing “everything that we know about a specific course of action” to produce “a number driven by probability.” 

“The absurd complexity of information in medicine deserves no less,” Dr. Zilberberg writes. “It’s time to start the probability revolution.”

Silly?

===================

Late last year, the American Journal of Bioethics published “Should the ‘slow code’ be resuscitated?" That is, are there end-of-life cases in which resuscitation efforts might be justifiably half-hearted?

The authors’ summary reads: “Most bioethicists and professional medical societies condemn the practice of slow codes. The American College of Physicians ethics manual states, Because it is deceptive, physicians or nurses should not perform half-hearted resuscitation efforts (slow codes). A leading textbook calls slow codes dishonest, crass dissimulation, and unethical. A medical sociologist describes them as deplorable, dishonest and inconsistent with established ethical principles. Nevertheless, we believe that slow codes may be appropriate and ethically defensible in situations in which cardiopulmonary resuscitation (CPR) is likely to be ineffective, the family decision makers understand and accept that death is inevitable, and those family members cannot bring themselves to consent or even assent to a do-not-resuscitate (DNR) order. In such cases, we argue, physicians may best serve both the patient and the family by having a carefully ambiguous discussion about end-of-life options and then providing resuscitation efforts that are less vigorous or prolonged than usual.”

One of the authors is interviewed here. 

Some pros & cons are considered here.  


==============

It ought to surprise no one that the dispute resolution process within the Texas Advance Directives Act is controversial -- it quite literally is a matter of life and death, and carries the potential of taking decision-making power away from a patient or surrogate while bypassing the constitutional guarantee of due process.

How often does this happen? The Texas Hospital Association is attempting to find out by surveying hospital ethics committees within the state to determine how often TADA’s dispute resolution is used. 

TADA is unusual in the way it empowers hospitals and physicians to resolve disputes; no other state in the country goes so far. But the province of Ontario also has established a process for dispute resolution known as the Consent and Capacity Board, which unlike TADA actually takes the decision outside the hospital. 

While TADA is being surveyed, the CCB will be headed to court.

The Canadian Supreme Court has agreed to hear the dispute between the family of patient Hassan Rasouli and his physicians. (Court papers here.) It is rare that a dispute in end-of-life care reaches such an authoritative and decisive level. 

Grief & the Oncologist

In recent books, studies and simply among chat groups on Twitter, better, earlier and ongoing dialogue concerning end-of-life issues is seen as pivotal to improved medical decision-making serving the patient’s best interests.

Often the patient is the focus of much of this perceived need for dialogue, with the implication that it’s primarily the patient or surrogate decision-makers who need educating -- which is what makes a scheduled article in Archives of Internal Medicine so intriguing. The subject is grief, sometimes a grief born of carrying burdensome news before death has even taken place. And yet this  grief is experienced not by patient or family, but by oncologists.

"Nature and Impact of Grief Over Patient Loss on Oncologists' Personal and Professional Lives" is the product of collaboration by an interdisciplinary team of authors from Toronto and Montreal -- notably including psychologist, palliative specialist and oncologist.

The authors find that oncologists experience grief in ways both common and unique, and suffer when they compartmentalize their feelings.

"The theme of balancing emotional boundaries captured the tension between growing close enough to care about the patients but remaining distant enough to avoid the pain of the loss when the patient died," the authors write.

Easier said than done? You bet.

"Few oncologists felt they had been able to do this entirely effectively, although they recognized that the inability to balance these boundaries might be problematic for them."

Oncologists experience expected aspects of grief, the authors say, but also emotions related their sense of responsibility and holding bad news that can arise even prior to the patient's death.

This grief can’t help but impact the care of other patients.

“Of greatest significance to our health care system is that some of the oncologists' reactions to grief reported in our study (eg, altered treatment decisions, mental distraction, emotional and physical withdrawal from patients) suggest that the failure of oncologists to deal appropriately with grief from patient loss may negatively affect not only oncologists personally but also patients and their families.” 

The authors eloquently connect oncologist grief with a darkly apt metaphor: cigarette smoke.

"We found that for oncologists, patient loss was a unique affective experience that had a smokelike quality,” they write. “Like smoke, this grief was intangible and invisible. Nonetheless, it was pervasive, sticking to the physicians' clothes when they went home after work and slipping under the doors between patient rooms.”

It’s a hopeful sign to to see a pallative specialist, psychologist and oncologist working together -- because a recurring scenario has the oncologist working heroically on a cure until all hope is lost, at which point the patient falls off an emotional cliff, palliative care is called in to mop up, and the compartmentalizing oncologist returns to another case that isn’t hopeless yet.

What worked well in producing this article -- the collaborative, interdisciplinary approach -- can be just as effective in provision of medical care. And in supporting the needed dialogue.

And, the authors conclude: “One way to begin to ameliorate these negative effects would be to provide education to oncologists on how to manage difficult emotions such as grief starting at the residency stage and as continuing education throughout their careers, with the recognition that grief is a sensitive topic that can produce shame and embarrassment for the mourner.”

(NOTE: Thanks to Carol Pollard at Yale for the tip to this article)

Communication as End of Life Specialty

Ever since writing recently about a roundtable discussion of palliative care in the ICU, I’ve wanted to know more about a participant, Dr. J. Randall Curtis, and the End of Life Care Research Program at the University of Washington School of Medicine.

Curtis, a founder of the UW program, is a pulmonary and critical care physician whose research involves measuring end-of-life care for patients with acute and chronic illness. According to its website, the EOL program’s mission is “to improve the quality of palliative and end-of-life care for patients and their families.”

Titles of publications and current studies give some insight into the priorities of the program: “Balancing Hope and Truth-telling for Patients with Cancer or COPD,” “The Transition from Cure to Comfort: Managing Death in the ICU,” and “A Randomized Trial of an Interdisciplinary Communication Intervention to Improve Patient and Family Outcomes in the Intensive Care Unit.” 

It is evident that Curtis’ program puts a laser focus on the role of communication in improving care and outcomes. Of its four current research goals, three directly involve efforts to improve communication between doctor and patient (or family).

I also found Curtis quoted in “Terminal Uncertainty,” a lengthy piece of reporting published by Seattle Weekly in 2009, in the months between passage of the Death With Dignity Initiative and its implementation in Washington State. The story focused on the rather abysmal batting average of physicians answering the question, “How much time do I have left?” 

A doctor’s ability to predict a terminal patient’s time left was a central component of Death With Dignity Initiatives passed in Oregon and Washington, and it is a key safeguard of the version headed for the Massachusetts ballot in November, as terminal patients must be in their last six months to qualify for the lethal prescription. But given the unpredictable nature of death, does “six months” have any real meaning? 

It would appear that the physician’s shortcoming for prognosticating time left is related not to competence, but to the limits of what is knowable. In research that led to its report “Palliative Sedation – Continuous Deep Sedation as Comfort Care until Death,” the Community Ethics Committee struggled to give meaning to the term “imminently terminal.” Did it mean days? Weeks? Months? Days to weeks, we decided.

Here’s a time element that is somewhat more reliable: Should Massachusetts voters approve the Initiative in November, it will be legal by this time next year for physicians in the state to prescribe a fatal dose to competent terminal patients.

In the Seattle Weekly story, Curtis tells reporter Nina Shapiro about treating an elderly man on a ventilator with severe emphysema. "I didn't think I could get him off life support," said Curtis, who saw the man daily fail a test to breathe on his own. The man did not want to be kept alive by machine, and so Curtis and the family made the hard choice to disconnect him, with the “knowledge” that he would die.

The man didn’t die, though, and in fact began to improve, which Curtis couldn’t explain except to say that "being off the ventilator was probably better than being on it. He was more comfortable, less stressed." Curtis says the man lived for at least another year.

In another case, a woman suffered from septic shock and multiple organ failure, but her family insisted on life support, and Curtis respected their wishes. "I thought she would live days to weeks," he said. But she improved, left the hospital and returned for a visit a half-year later.

"It was humbling," Curtis told Seattle Weekly.

Amazing, even? "It was not amazing. That's the kind of thing in medicine that happens frequently."

Maybe such ambiguous scenarios are to be stared at in wonder, not understood or explained, but they are revealing in the context of what “six months to live” means. But acknowledging the ambiguity probably makes for improved communication with the family of a dying patient. Which is what made me want to know more about J. Randall Curtis in the first place.

The Choice Not to Aggressively Treat

Diane Rehm’s radio show recently presented a powerful, personal story of end-of-life decision-making. In short, Amy Berman told of opting not to aggressively treat her Stage 4 breast cancer, but to rely significantly on palliative care to enhance what time she has left. The interview is highly recommended.

Below are links to stories that take the interview a bit further.

From Amy Berman, and from palliative physician Diane Meier.