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?

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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.  


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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.