By Lewis M. Cohen, MD

Harper Collins Publishers

Review by Janice Reynolds, RN, BSN

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Most nurses provide palliative care, whether we work in acute care or end-of-life care, because we manage the symptoms of critically ill people who may die. But moral distress, anger, and misinformation can abound when we forget that others do not necessarily share our sense of ethics and morality. There are those who see our goal not as quality of life, but quantity of life. Reading this book really opened my eyes and increased my understanding of those who oppose quality-focused end-of-life care. I recommend the book not only because of the subject matter, but because of psychiatrist Lewis Cohen's recognition of nurses as equals who practice at the forefront of end-of-life care.

Nursing is valued and prominent throughout this book. One passage says that

the truth [is] that physicians are rarely present when people die. Instead it is nursing staff who are the frontline combatants when death arrives.

I came to marvel not only at their firsthand knowledge but also at their honesty and mordant sense of the ridiculous that allows them to adapt and even flourish in our pain-filled setting. Nurses see the suffering, the struggles to be cured, the families' anguish, and the denial, resignation, or acceptance when death is inevitable. Pulling the plug--a rather inelegant phrase--is a complex process that forces nurses to draw upon their empathy, personal convictions, religious beliefs and professional training.

In the book we are drawn into a story of two nurses who provided good palliative care to their patient but were accused of murder by a nursing assistant. While the nurses were being investigated, they could not practice nursing, and although they were never charged with a crime, their lives were forever changed. The family of the patient they helped supported the nurses throughout the ordeal. Cohen uses this story to explore both sides of the palliative care debate, which has often been controversial.

The book really enlightens readers about the large groups of people in society who feel that patient autonomy is greatly overrated and that length of life is more important than quality of life. After the 2009 accusations that the Obama administration's health care reform plan was going to set up "death panels," many laughed, believing that these remarks came from a small fringe that did not understand Advance Directives or palliative care. But in Cohen's book, we learn that groups aligned against palliative care are numerous and have real influence. Those who resist palliative care may believe that:

God wants us to do everything to help the patient live longer;

There is a civic duty to prolong life no matter what;

Not attempting to prolong life is the same as murder;

Palliative care might be considered euthanasia (this view is strong in some disabilities groups);

Patient autonomy is not important (even when expressed in Advance Directives); or

Pain medication hastens death (which research shows does not happen when medication is given appropriately).

One phrase that is becoming more common in reference to medically futile care is "prolonging death," a shift in emphasis that may help clarify what is really happening with much care at the end-of-life.

Several years ago I cared for a patient with end-stage chronic obstructive pulmonary disease (COPD).  She chose to refuse intubation and resuscitation in her demise, a status referred to as Do Not Intubate/Resuscitate (DNI/DNR). (A recent trend is to describe this status as "Allow a Natural Death" or "AND," to clarify the goal of care in such situations.)  The nursing assistant working with me (who was also a new nursing student) reported that the patient's oxygen saturation was very low (70%) and that she was very short of breath.  I thanked the nursing assistant and said I would give the patient some morphine. I also said that the assistant did not need to do further oxygen saturation measurements. They were unnecessary since the patient didn't want to wear an oxygen mask and we knew the patient was heading toward death. Our main goal was to make death comfortable, not to prevent it. Since death was inevitable and the patient had decided to fight the disease process no further, we were alleviating her discomfort from the shortness of breath by giving her morphine so she could die peacefully.

The nursing assistant became very upset, telling me that the patient was "going to die if we don't do something," and that it shouldn't matter if the patient did not want to be intubated, we should do it anyway. I treated it as a teaching moment, and fortunately it remained that, rather than a criminal investigation, as in the story Cohen tells. But it is frightening to think it could have been otherwise.

Review by Janice Reynolds RN, BSN, BC, OCN, CHPN
Reviewed March 30, 2011
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The views expressed herein do not necessarily reflect those of the Board Members or Advisory Panel of The Truth About Nursing.

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