Approaching death with humility and care

I am recommending that every physician and nurse in our hospital read the cover story of today's New York Times Magazine "A right to die...the will to live" by Robin Marantz Henig.  The article describes in a way that is penetrating and analytic - but personal and humane -  the narrative of Brooke Hopkins, a bon vivant and English professor rendered quadriplegic in a cycling accident, and his loving wife Peggy Battin, who happens to be a bioethicist who has spent her career publishing on the right to die.

After years of philosophizing, legislating and teaching, our society - including its healthcare professionals - continue to struggle and suffer under the weight of decision-making at the end of life.  There are so many obstacles to getting this right.

First there is the legal clutter.  Thank goodness most physicians practice in only one state, because the hospital's role and the rights of the patient's "agent" all vary somewhat across state lines.  Then there is the evolving bioethical landscape.  How to understand patient "autonomy" and how this value balances with "beneficence" or the obligation of physician's to act always in the patient's best interest.  Additionally, there are our own biases.  There are those professionals, for example, who are so focused on death with dignity that they find it hard to understand that there are patients and families who want to fight for life.  And finally, there is intense pressure of time on nurses and doctors alike to ask the standard questions, populate the database and move on.

And so physicians in dialogue with families about the right next step are listening, inevitably, to a din of voices in their heads...the last Grand Rounds that talked about meanings of futility...Is it permissible to stop a life-prolonging treatment once started?   What if the family doesn't really know the patient's wishes?  What if the patient's healthcare agent believes that the ventilator should be disconnected but a younger sibling strongly objects?  Am I breaking a hospital rule? A law? A moral precept?

Reasonable persons can disagree sharply about what represents an authentic and autonomous decision of a patient at the end of life, whether to stop at the next intervention or to withdraw life-sustaining care.  I have heard it said that a patient who has asked not to be intubated in a formal declaration should not  be asked again at the time of crisis, because the sensation of air hunger (which probably feels like drowning) would cause many patients to change their minds.  How should we think about this?

There is hazard in all this uncertainty. I am concerned about doctors and nurses sidestepping the real issues while "normalizing" end-of-life discussions.  Populating the checkbox.  "Patient asked about appointing a healthcare proxy."  Check.  "DNR order."  Check, check.   This would be an abdication of our role and responsibility and a kind of abandonment.  What we need instead is a recognition of the fact that the end of life cannot be simplified and that there are no right answers.  Most of all we need honesty, humility and presence before the dying and those close to them.  This is the irreducible reality of our profession and what stands most starkly apart from the "business" of healthcare.