A new physician-written book sheds much-needed common sense on end-of-life care in the ED.
“The Spirit that is in all beings is immortal in them all: for the death of what cannot die, cease thou to sorrow.”
Without reference to Pascal’s Wager or rehashing the Richard Dawkins/Francis Collins debates, let’s start with the premise – one constant we can all hold hands and sing Kumbaya about – that we’re all going to die. Where we go after death is a major debate, but this column has neither the space nor the inclination to carry on that fight. Despite the fact that we are no good in this country at talking about death, it is not going to go away any time soon. It awaits communists and capitalists, Muslims and Jews, people who run marathons and people who are getting fat and lazy sitting on the couch. Death is the universal invariant which sets the frame of reference for this experience which we are all sharing.
All three of the major monotheistic religions which form the brotherhood of the children of Abraham put forth the notion that we will return to God, without qualifying it by our age at the time of such transmutation or the condition of the body. So I ask the question: Why are we the only modern western society which can’t let go? We beat the near dead like dogs. In fact if we did to our dogs what we are doing to our old infirm relatives we would be charged with animal cruelty.
There are things I generally miss about not attending in the emergency department anymore. But one thing I don’t miss is pulling back the sheets on a nursing home transfer on a clearly end-stage patient whose family is demanding “everything” be done.
What does “everything” mean anyway? I feel it is immoral to prolong suffering. If we can’t give meaningful life and import to a patient’s condition, what are we doing? Nobody ever said that the physician was under any legal or moral obligation to participate in this macabre dance of death. My personal experience since 1968 until now is that when the family was really spoken with they did not want to torture their dying relatives with unnecessary suffering. What really amazed me over the years was the fact that so few of them had actually been spoken to by their primary care doctor about what was going to happen to their loved one. Just as we teach families how to care for newborns we need to thoughtfully instruct them as to reasonable expectations at the end of life. When in doubt, at nursing homes, staff make the default judgment of having a near dead patient whisked away to the dernier cri of lights and sirens. This is Shakespeare’s “Full of sound and fury, signifying nothing” taken to the reductio ad absurdum.
Since the United States economy is falling into the abyss of unconscionable debt, and the largest part of the rise in that debt is healthcare, we cannot avoid this debate.
Thankfully, now enters a publication full of reason, ready to at least begin the proper debate – a consigliere in this sea of indecision. Monica Williams-Murphy, MD and her husband Kris Murphy have this month published a book called “It’s OK to Die.” Monica is an emergency physician who, like the rest of us, has grown weary of going home after spending her shift dealing with end-of-life care issues and asking herself if we as a people have gone insane. Her husband Kris, though not a physician, is an intelligent tax-paying citizen who has watched this dance of death in his own family.
As I was reading the book I wondered why I hadn’t written it myself. It’s so obvious, so clear, so full of exactly what each of us sees every shift in the department. It is not only the human story of what we do every day – how we feel as the “magicians” – but also the story of being caught in the middle between the suffering patient and the unprepared families. But I didn’t write the book, and thank God these two intelligent and sanguine people have. They confront the problem with insight and without animus. They have usurped thoughts we have all had and married them not just to introspection, but to an action plan.
The book spends no time with useless bits of information and yet covers a broad array of topics – many of which are not usually included in medical texts. There is a must-read chapter entitled, “We agreed to let mom die,” in which the authors go through the problem with having multiple family members in the department and the various discussions that can go on as to whether advanced technology is going be used. Another must for physicians is the section which deals with the movement from high tech to “high touch” care. One needs to know that when God puts his hands on, you should take your hands off.
This is not always clear in the heat of the moment in the emergency department. How do we make these decisions? How do we bring everybody along? How do we decide what type of technology will be used in the last moments of our life? The section on new directions of end-of-life care gets down into this nitty gritty. The book covers how to write orders on patients who are about to die, what should be included and what should be commented upon. How do we bring the nursing staff and other hospital personnel into meaningful alignment so that the goals of the patient and family are clear to us all?
Another highlight of the book is the discussion on end stages and what the patient will look like and how to communicate these facts to the family. All the small details which are never really discussed in medicine become considerably more important when you’re dealing with the families of the near dead.
There is a touching chapter entitled “Six things that must be said to make it OK to die.” Read it. Read it not as a doctor but as a person that has lost a friend or family member. It brought back memories of my own father’s death and how I could have done it better. By the time my mother died I had learned a lot. I wish I’d had some of the insights of this book to use with many of the families I’ve dealt with over the years. If you are counting on our salacious fourth estate to carry on this type of discussion, don’t hold your breath. These neebobs would rather comment on Bieber’s paternity or Kardashian’s gluteus maximus and consider these the important issues of our time.
The kakistocracy we call our government has neither the intelligence nor the stomach for the translation of such debates into policy. So much for lawyers. No, if we want this done we must do it ourselves. If you are more than casually interested in the future of this society, help carry on the debate. Do not be dissuaded by the dilatory process which has been set up to thwart our long-term goals. To quote from It’s OK to Die, “Medicine should be involved in 1) relieving suffering of the patient, 2) relieving unnecessary suffering of the families as they go through this horrific event, 3) to act as mindful stewards of the collective treasure of the United States.”
Vox clamantis in deserto.