Susan E. Mazer, Ph.D. Blog

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Hi, and welcome to my blog! I'm Susan E. Mazer -- a knowledge expert and thought leader on how the environment of care impacts the patient experience. Topics I write about include safety, satisfaction, hospital noise, nursing, care at the bedside, and much more. Subscribe below to get email notices so you won't miss any great content.

End of Life Care Decisions, Part 2: Knowing What to Do, When

March 13, 2015

OLYMPUS DIGITAL CAMERAThe topic of end of life care has been on many of our minds recently. Last week I wrote about the choice between “do not resuscitate” (DNR) and “allow natural death” (AND) in end of life care.

In a series of essays called “The End”, published by the New York Times last month, people who work in fields dealing with death and dying, and those who have experienced the death of a loved one, explored issues related to end of life care.

A recent opinion piece by Dr. Ira Byock in the Times makes a strong case for increased and improved hospice and palliative care. He looks for the public outrage about brutal suffering at the end of life because of a lack of training and proactive involvement of physicians in planning.

Over 800 readers responded to Byock’s argument with stories and opinions ranging from praise for the article to frustration for either what was not said, or the narrow path Byock offers. The rebuttals were in line with the ongoing controversy regarding the polarized views of the right to life and the right to die.

In this case, given the stature of Byock and his expertise on end of life issues, it was surprising that he was silent on the question of whether one should have the right to die if life is no longer worth living and death is not necessarily imminent.

Oregon’s Death with Dignity Act, passed in 1994, has yielded interesting results about how terminally ill patients might choose, if they could choose, to end their own suffering. There had been concern that there would be a flock of requests and Oregon would become the death capital of the country.

However, that is not what has happened.

To date, in the 20 years since the statute passed, 1,123 people have submitted requests for medication that would end their life.  Only 723 have actually died by ingestion of such medication. Others died from other causes or chose to not use it.

Regardless of how you feel about suicide or physician-assisted suicide, how we die remains an unresolved issue in our society at large; basically the dilemma sits on the question of whether human beings have any right to choose the method or time of their own death.

The quandary over where medicine stops and God starts, where scientific prognoses yield to the will of the patient, where science must answer to other concerns, such as values and ethics, has remained unresolved and messy.

Nonetheless, in-depth discussions continue that reveal both fears and hopes, myths and realities, and the great ambiguity that lies between our opinions and our experience.   And, for each of us, each time we venture into this difficult arena, is critical to helping us make decisions and accept outcomes over which we have no control.

Our nurses, physicians, patients and families, and medical researchers each have a role in caring for the ill and making life better, longer, and healthier. At the same time, there is often a sense of helplessness when all the science and right medical practice cannot save a life.

The reality is that today we can save a life that otherwise would have been lost; we can bring someone back from the brink of death and from death itself. I am not sure we know how and when to do, or not to do, everything we can.

Critical care nurses deal with these complex issues daily, as do emergency room nurses. The ethical quandary of when a patient dies and the clinician takes responsibility goes to the heart of the issue.

Acknowledging and grieving the loss of life for the clinical team is critical to remaining humanized in an otherwise technologically-dominated system. Years ago, Rick Pozda, manager of the ICU at St. Luke’s Hospital in Houston, TX, had the idea for staff to sign and send a card to the family as a way to deal with their own sense of loss.

Our hospital and hospice clients share how having The C.A.R.E. Channel creates a sacred space that is comforting to patients and families. Transforming a room into a sacred space in which life can end in peace is an art that mitigates the painful detachment of medical science.

What is clear is that while the patient dies, the families and staff live for the rest of their lives with the memories of those last moments.

What are you doing to support your team in managing these profound questions of life and death as it occurs in front of them?

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