The Journalist, the Mom & the Decision

I have to read more by Charles Ornstein. Here’s a health journalist who “gets it” on many levels -- including the deeply personal.

In “How Mom’s Death Changed My Thinking About End-of-Life Care,” he recounts for ProPublica.org the ramifications of his family’s decision-making about his mother’s life support. 

A few insights and highlights:

• “In all my reporting, I'd never realized how little the costs to the broader health-care system matter to the family of a patient.”

• “You can know somebody's wishes and still be confused about the appropriate thing to do.”

• When a doctor says, “We have plenty of money in the U.S. health-care system to make sure that we're supporting families in coming to a decision that they can all feel good about. I feel very strongly about that,” he leaves Ornstein to question: “Plenty of money? How did this mesh with his view that too much money is spent on care at the end of life? He said his concern is more about situations in which end-of-life wishes aren't known and cases where doctors push treatments for terminal illnesses that are clearly futile and that may prolong suffering.”

Read the full story here.

Does Care Continue When Treatment Ends?

“Examined Lives: Withdrawing care in the ICU” is a powerful and highly recommended essay with valuable insight about the point at which it becomes clear to the medical care team that a patient is beyond therapeutic or curative efforts.

That it comes from an intensive care nurse makes it that much more valuable, as the ICU nurse is most closely connected to the patient in the bed, and perhaps understands better than anyone, even the physician, the patient’s status is in the transition from life to death.

And yet a word choice by the author, used in the headline and throughout the piece, somewhat undercuts the message for me: “withdrawing care.”

“Intensive care is the place where we hold back death after an acute illness or injury, largely by breathing for patients with machines and by stabilizing their vital signs with a host of powerful drugs,” the nurse and author, Kristen McConnell, writes. “Some patients do well and recover, others can’t, and sometimes a patient’s family realizes that his health won’t meaningfully improve, or that he would not want to live in his condition, and decides to withdraw care. The first time I saw this was haunting.”

But isn’t treatment what is being withdrawn in such a case? Isn’t care the reason such treatment is being withdrawn? Doesn't care continue until the patient is gone, and even afterwards? Isn’t it care that allows a person to die in relative peace? 

McConnell herself seems to get this, as she writes of a dying patient: “The doctor put in orders to withdraw care and discontinue the medications, but I wanted to wait until the tube was actually out before stopping those, because I didn’t want him to die while he still had a plastic tube taped to his face and snaking down his throat, pushing air into his lungs.”

In this case, a tube -- a treatment -- was withdrawn, while care continued. 

This may seem the niggling point of a copy editor, and yet maybe understanding the difference between treatment and care, and not using them interchangeably, is what has earned palliative care specialists such a good reputation in end-of-life medical practice.

When Care of the Dying Descends into Conflict

This post is adapted from the Community Ethics Committee’s newly released report, “Medical Futility: Strategies for Dispute Resolution when Expectations and Limits of Treatment Collide.” 

In December 2012, before the Supreme Court of Canada, the attorney for a patient’s family refuted a medical assessment of futility with these simple words:  “The treatment is 100 percent effective. It permits him to breathe.”

If only it were that simple. Once-terminal diseases have become treatable and even curable, and the human brain sometimes surprises doctors. And yet, we still die. We say we don’t want to die hooked up to tubes and monitors in a hospital bed, but increasingly we do, in a state that the surgeon and author Atul Gawande named “warehoused oblivion.” 

Sometimes dying can be a time of great clarity and meaning, especially when all parties involved acknowledge that the process is taking place and is not reversible. But acknowledgment requires acceptance of something we cannot know with absolute certainty. For some religious, this is like faith itself: belief in something unknowable. Death is certain; dying is unpredictable.

For the better part of two years, the Community Ethics Committee has conducted a study of “medical futility” in end-of-life care, a destructive, shape-shifting reality of the modern Intensive Care Unit. There are myriad varieties of medical futility, but the one most troubling sometimes descends into dispute that finds physicians saying aggressive therapies and life-sustaining measures will only do harm, and loved ones saying do everything. In the middle of this is a patient who typically can no longer speak, or even comprehend, and can seem to no longer feel except during the therapies in dispute.

Perhaps no one is more aware of this than the modern ICU staff, who increasingly are asked to provide technological life support and otherwise “do everything” to unconscious and irreversibly dying patients at the request of family members who hope sometimes for divine intervention, sometimes for a miracle more scientifically based. The key word is hope. And hope, as Gawande has said, is not a treatment plan.

The Community Ethics Committee wishes there could be a simple formula with a clear biological and spiritual threshold, beyond which therapy and life-sustaining technologies would be abandoned while suffering would be compassionately treated and the dying process allowed to proceed naturally to a peaceful end. Unfortunately, there is no such formula or threshold. There are only individual patients and their families and caregivers - mortals all. 

But what do we as a society tell our physicians and nurses, the religious and non-religious alike, who are devoted to curing and caring for fellow humans, having committed themselves to doing no harm? How do we empower them to use their best judgment and to do the right thing? The determination to continue or stop treatment requires human judgment, flawed and error-prone as it is. Truly knowing the difference between hastening death and prolonging dying is impossible. And yet to whatever degree we can know this, it is important. It is vital in that word’s purest sense. Perhaps the best we can do is to treat each case individually and compassionately with a deep respect for a human life that transcends the denial of death.

In those cases when medical futility results in intractable dispute, these were areas of special concern to the CEC: the compromised integrity and burnout of the care team, nurses in particular; the importance of protecting the vulnerable, of allowing for disagreement, and putting the patient first; and making certain there is someone with an empowered voice among the care team who is considering the “whole” patient, and not just symptoms and vital statistics.

Among its recommendations, the CEC would like to see more medical institutions to develop strong palliative care, and not to wait until a patient is near death to make use of it. Care of patients at the end of life is immeasurably enhanced by the involvement of medical personnel trained in palliative care – both in their particular skill in conducting constructive dialogue with patients and families about end-of-life issues and in their expertise in pain management and in developing effective end-of-life care plans.

Palliative is a relatively new specialty in medicine but has proven especially capable of knowing the “whole” patient, compassionately and respectfully treating suffering, and ultimately allowing for the “good death” many of us say we want. But too often palliative care is systemically marginalized, and put off till “all hope is lost.” Palliative care needs to be brought into the mainstream of medical practice.

And even though palliative care is increasingly available in mid-size to large hospitals nationally, it is significantly less likely to be available at the public and other hospitals where 47 million Americans who are either uninsured or geographically isolated get their medical care. (See http://www.capc.org/)

Advance directives are an imperfect means of giving voice to patients’ wishes and values when they can no longer speak for themselves, but they are an important tool for physicians in serving the best interests of patients who often arrive as strangers in need, especially in the emergency room setting. The MOLST system deserves full backing in Massachusetts. It is the CEC’s belief and experience that the more individuals and society discuss complex end-of-life questions, the less often disputes over medical decisions will arise.

Finally, when in those few but wrenching cases where decision-making over care of the dying results in intractable conflict, there must be a means for society to resolve the dispute fairly, compassionately and expeditiously. In Massachusetts, the CEC believes the most promising means of making this happen would be as a new and uniquely crafted component of the state’s external review process for determining “medical necessity.” Such a dispute resolution process is needed not only for the sake of the medical care teams and for the families, but it is especially needed in serving the best interests of the patient.

To read the CEC’s full report, "Medical Futility: Strategies for Dispute Resolution when Expectations and Limits of Treatment Collide," go here.