Feb 272013
Knowing When, When Knowing Is Impossible

By Paul C. McLean

The child was her first, and there were complications and aggressive therapies from the start and for months. She was unaware that the medical team was coming to believe the baby would not survive, that aggressive treatments no longer served a therapeutic purpose and were instead doing harm. Over time, nurses began to decline providing treatments that had become too compromising, too painful, but no one said this to the mother. She isn’t sure she could have heard it then, anyway.

One nurse faithfully stayed right to the end, remaining an important source of support for the mother. Then, shortly after the child’s death, the nurse quit her job.

A quarter century later, having raised children into adulthood, there still is grief. And not simply from the profound experience of losing a child, but also from the haunting effects of retrospect -- wishing she knew then what she knows now.

And what she knows now is, aggressive attempts to save her child went on too long. The doctors should have been clearer with her, and she should have “let go” sooner.

Such retrospect doesn’t always have, or even welcome, an outlet. But the mother courageously told her story to a group of citizens from the Boston area who comprise the Community Ethics Committee (CEC), part of the non-profit Community Voices in Medical Ethics and created to bring an informed community voice into the complex dialogue around medical ethics.

The group, which aspires to a diversity reflective of the Boston area itself, has submitted a series of reports to the teaching hospitals of Harvard Medical School, through the Harvard Ethics Leadership Group. The most recent is “Medical Futility: Strategies for Dispute Resolution when Expectations and Limitations of Treatment Collide.” The mother’s story is one of several informing that study.

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 certainty. For some religious, this is like faith itself: belief in something unknowable. Death is certain; dying is unpredictable.

There are myriad forms of futile medical treatment, but the one most troubling to the CEC sometimes descends into dispute that finds physicians saying aggressive therapies and life-sustaining measures will only do harm, and loved ones saying “do everything.” Such disputes are relatively rare, and yet when they cannot be resolved among the family and care team, they are enduringly harmful to all involved.

In the middle of such disputes is a patient who typically can no longer speak, or even comprehend, and can seem to no longer feel except in reaction to the very 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 the surgeon and journalist Atul Gawande has said, is not a treatment plan.

The Community Ethics Committee wishes it could have found 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 human life that transcends the denial of death.

Paul C. McLean is a member of the Community Ethics Committee and Vice President of the non-profit Community Voices in Medical Ethics, Inc. The full report, “Medical Futility: Strategies for Dispute Resolution when Expectations and Limits of Treatment Collide,” can be read at www.medicalethicsandme.org. 

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Knowing When, When Knowing Is Impossible (Paul McLean)