Getting End-of-Life Care Right in MA

When people are willing to consider their own mortality, they tend to want to die at home. This is not, however, what often occurs. We don’t talk about dying, and we die more often than we’d like, or than is necessary, on a hospital critical care ward.

To its credit, Massachusetts is addressing this disparity. And it will involve a more central role for the palliative care specialty. This is a very good thing.

The Massachusetts Department of Public Health is in the process of creating what it terms Regulations Regarding the Information and Counseling about Palliative Care and End-of-Life Treatment Options.

What the DPH is hearing is that the chances improve to give people the “good deaths” they wish for when the palliative care specialty plays a more central role, and the medical system knows their wishes.

The DPH sought out testimony in reaction to a draft of these regulations, and last Thursday heard from the chair of the state’s Expert Panel on End of Life Care, the executive directors of the Conversation Project and MOLST program, among several others.

By coincidence, on the day of this testimony, a Pew survey found that “at a time of national debate over health care costs and insurance ... most Americans say there are some circumstances in which doctors and nurses should allow a patient to die. At the same time, however, a growing minority says that medical professionals should do everything possible to save a patient’s life in all circumstances.”

“In all circumstances” would seem to mean regardless what the patient wants or what the doctors think best. So for about 30 percent of America, according to Pew, allowing natural death to occur is always wrong, is never in a patient’s best interests, and what the patient or doctor say can be disregarded.

Among other things, that poll is indication of the complexity of dealing directly with end-of-life care, so DPH deserves some credit for following up on the recommendations of the Expert Panel. 

Among those testifying was Carol Powers, president of the nonprofit Community Voices in Medical Ethics and co-founder of the Community Ethics Committee (sponsors of this blog). Since 2007, decision making in end-of-life medical care has been central to much of the committee’s work.

Palliative care is widely misunderstood, and its benefits both for the comfort and even the longevity of patients often are delayed.

“A very real impression among many in the community is that a transition to palliative care, and more particularly entry into the hospice care system, means no further medical treatment options will be provided, imposing a ‘death sentence,’” Powers said. (See Powers’ full testimony here.)

Palliative care needs to be clearly and carefully defined in the regulations, Powers said.

Given varying sensibilities about mortality, it is hard to the right time to broach the subject. And yet, Powers said, “A patient’s prognosis, whether it be a six-month terminal illness or a lifetime of medical interventions to address a chronic condition, should not limit the appropriateness of initiating this discussion or providing this information.”

Any pamphlets or other educational information “must be sensitive to cultural and religious perspectives; it must be in a form that assumes face-to-face conversations with a member of the patient’s health care team; and it must be provided in the context of continued and compassionate care,” Powers said.

More generally, the Community Ethics Committee is encouraged by the DPH effort.

“We believe hospitals, clinics, and long-term care facilities should have an obligation to provide information on palliative care and end-of-life treatment options,” Powers said, “and we applaud (DHP) efforts to ensure that happens.”

What if NOT making end-of-life plans cost you money ?

Granted, after you are dead, it could be the least of your worries. But if you do make plans for your estate, and ignoring this part results in significant losses to its value, maybe that is the trigger that will make some people tackle what is obviously an uncomfortable topic.

To some it is not a topic of polite conversation, to others it is shocking, morbid, inappropriate.

The Wall Street Journal and other publications have started to address end of life planning as a beneficial activity, if only to preserve value.

From the Journal article:

The end-of-life experience "is bankrupting us personally, institutionally and governmentally, and we're not getting what we want," says Mr. Hebb, who is 37.

Between the Quotation Marks

The term brain death appears without quotation marks in the subtitle of “Defining the Moment” (Shoresh Press), a work of remarkable scientific and theological understanding. But that is the last time in David Shabtai’s book you will find brain death without its typographical book ends.

“The quotation marks (are) a constant reminder of the ambiguity and imprecision of the term,” Shabtai writes.

No matter what you do with the term -- underline it, italicize, bold-face it, capitalize it, or delete it -- there is no typographical or grammatical device to anoint it with clarity. Because brain death, like so much about modern decision making at the end of life, defies clarity. 

The complete title is “Defining the Moment: Understanding Brain Death in Halakha.” Shabtai is a medical doctor, a graduate of the New York University School of Medicine. He also is a rabbi, in fellowship at the Wexner Kollel Elyon of the Rabbi Isaac Elchanan Theological Seminary. He teaches medical Halakha, the intersection of medicine and Jewish law, at Yeshiva University in New York City. (I discovered Shabtai, and his book, via Twitter.)

The complicated end-of-life negotiation between medical practices and deeply help personal values is not unique to religious Jews. Neither are many questions considered in “Defining the Moment” uniquely Jewish, though this is a book meant for halakhic decisors (those rabbis specially tasked with this defining/divining). As much as it is a deeply theological work, the book is a study of what it means to be human and mortal. And though the author’s lens is specifically Jewish, the book’s blessings are universal.

I became interested in beliefs specific to Judaism while reading about the 2008 death of Samuel Golubchuk in Winnipeg, Manitoba. At the time, Harvard’s Community Ethics Committee, of which I am a member, was preparing to study disputes between families and medical professionals over care of the dying.

At the center of these disputes is the perplexing concept of medical futility, when diagnosis and prognosis collide with beliefs, values and knowing when to let go of a loved one. These disputes, a side effect of technologies that breathe, eat and bolster immune defenses for humans who no longer can on their own, usually are resolved with a blend of patience, empathy and understanding. But when they are not resolved, the dying process can be prolonged, grief magnified and harm done to patients, doctors and nurses alike.

Such a dispute developed over the care of Samuel Golubchuk, who died after an extended time on life support while a court date was still months off. Golubchuk was not considered brain dead, but doctors came to believe his life-sustaining therapies were prolonging his dying and causing suffering. His adult children sued to continue life support, saying he would want this, as an Orthodox Jew, while intensive care physicians insisted that treatment was futile, and even harmful to the patient. One attending physician resigned from the hospital, two others from Golubchuk’s care.

Such a scenario is not unique to an Orthodox Jewish patient. Similar disputes have involved Catholics, Muslims, and believers and nonbelievers of all kinds. What they share is the uncertain knowing of when therapies have crossed from prolonging living to prolonging dying. And if dead has become difficult to define, dying is no easier.

Which underscores the importance of understanding brain death, a “new criterion for death”  introduced in 1968 by the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.

Shabtai quotes the President’s Council on Bioethics: “Calling the condition of the patient who meets a set of diagnostic tests ‘brain death’ begs the question of whether this condition does or does not warrant a determination that the patient has died. What is needed is a separate, non-prejudicial name for the condition that describes the state of the patient: a name that does not, by its use, commit one to any judgement about whether the death of the human being has occurred.”

Good luck with that. The French call it coma depasse (beyond coma). The Harvard Committee, way back in 1968, opted for “irreversible coma.” Other attempts include “irreversible apneic coma” and “brain arrest,” and the choice of the President’s Council: “total brain failure.”

“The various choices,” Shabtai writes, “reflect different value judgments as to what it means to be dead.”

More recently, when the Community Ethics Committee was beginning its study of medical futility, I described to colleagues what I had learned from coverage of the Golubchuk case by sources ranging from mainstream newspapers to right-to-life websites. I described how Golubchuk’s children were passionately committed to sustaining his life mechanically, honoring their father’s deeply held Orthodox Jewish beliefs; to do otherwise would mean hastening his death. 

Hearing my description, a CEC colleague, himself a rabbi, grimaced. “No, no, no,” he said. The family had it half right. While it is true that hastening death violates Jewish law, prolonging the dying process can also be a violation. 

So where is that line? As with brain death, how to define that moment?

(While unrelated to Shabtai’s book, it seems for worth noting that a working group for the Vatican’s Pontifical Academy of Sciences wrote in 2008: “Brain death is not a synonym for death, does not imply death, or is not equal to death, but ‘is’ death.”)

Shabtai’s book contributes greatly to providing that elusive definition of “the moment,” and does so while addressing the scarcity of organs amid growing transplantation successes and needs. When does death come and make organ harvest acceptable? When the heart stops? When respiration ceases? When the brain dies? These do not occur at once, and once all have occurred, there is little time to harvest an organ before it becomes unusable.

“One of the most pressing ethical problems of our day, defining death deeply probes the meaning of what it means to be alive,” he writes. “Aside from philosophical intrigue, determining the precise moment of death has serious practical ramifications, ranging from issues of burial, bereavement, and mourning to withdrawal of therapy.”

Delayed burial is prohibited by the Torah, and a body must be buried intact. “However,” Shabtai writes, “desecrating a corpse is not one of the three cardinal sins,  and is therefore permitted for the purpose of saving a life.” Indeed, it might be considered a mitzvah.

The nineteen chapters are broken into three sections: Defining the Moment of Death, Halakhic Texts, and Modern Opinions on Brain Death.

With no background in Halakha, I found the parsing of studies and decisions to be over my head. But this collection and assessment of Talmudic grounding and the thinking of these decisors is clearly of great value, as is Shabtai’s perspective as both a medical professional and a rabbi. 

Shabtai concludes “Defining the Moment” with a short chapter titled, in part, “Epilogue.” This is hardly remarkable. Many authors use an epilogue to tie up loose ends. But to “Epilogue,” Shaptai adds, “-- In Lieu of a Conclusion.” 

Research often concludes disappointingly with “needs more study.” And, to a certain extent, that’s true of  “Defining the Moment.” But this may be this physician/rabbi’s greatest achievement. There really is no answer that will satisfy all concerned -- be they learned rabbis, physicians, both or neither. Even within Judaism, Shabtai writes, “Deciding which approach to follow and determining practical Halakha is the sacred task of the halakhic decisor.”

There’s a certain wisdom to containing “brain death” within quotation marks. And maybe there’s also a need for a punctuation mark combining question mark, period, exclamation point and elipses.

Because some questions will outlive us all.

For more on David Shabtai and his book, visit www.definingthemoment.com

On Twitter: @MedicalHalakhah.