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.”
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.
17 Comments
Dr. Henry,
Thank you for your review and more importantly your observations on the “real world” found in EVERY emergency department. Monica and I believe “It’s Ok to Die” should be read by every EM,FP,GP,Gerontologist, Oncologist, etc, who has elderly patients (as well as read by those patients and their families. )—-(Of course I have a direct financial interest in seeing this happen, but the book, or as we call it, “The Cause,” is hyper important.)
While the effort to get Medicare to include end-of-life care planning, in the services it will compensate physicians to conduct has TWICE been recently shot down, their is hope that a third time trying will be successful!
(For those that would like to get a copy of the book, it is ONLY available right now at OKtoDie.com in both hard copies and eBook versions.)
I worked in an ER for two years and constantly saw patients with no hope, who were ready to go, be wheeled in by squads with their DDNRs resting on their laps with the rest of their paperwork. Family members have a level of selfishness when they do not understand that their loved ones, too, are mortal. We do not know how to address death in this country. We cling to life in romantic but childish ways, and many do not understand that’s not only OK to die, but we need to die. Thank you for shedding light on this book.
Emergency Physicians have become the defacto experts on end-of-life medical decision-making and as such, we should be leading the national debate on issues related to death and dying. Trajectories for health care are set or changed based on what care we initiate or withhold in the Emergency Department. Join with me in educating the nation. Visit http://www.oktodie.com to buy the book or write your stories so that others may learn from your expertise.
Thanks for your support,
Monica Williams-Murphy, MD
I prefer to think that it is NOT ok. I prefer to seek life with determination.
I agree with seeking quality of life with determination (self-determination to be precise).As a 90 year old grandma, I will not seek quantity of days over quality. I will not be found lying barely conscious in an ICU receiving the full court press to buy me extra hours. Instead, I will accept fewer days, for days that are more full of life.
Dr. Henry’s opinion is in step with new ACP ethics guidelines. As long as Americans are paying for Medicare, and as long as Medicare is paying for Americans’ health care, we all have a responsibility to mindfully protect the money we’re paying the government for our health care. Physicians must fulfill this responsibility by a) honoring their professional oath to ‘do no harm’, and by b)acting in the best interest of the patient. Likewise, our citizens must fulfill this responsibility by a)accepting that medical treatments which will not improve the patient’s clinical outcome are a harmful waste of their own money, and by b)realizing these treatments are never, ever in the best interest of the patient – – whether at the beginning of life, the middle of life, or the end of life.
Greg,
Nice job as always. I am a risk management subscriber and enjoy you in that setting, too. Am I correct in assuming that the 4th estate is the media? And could you please translate the latin bit at the end? (I didn’t make it that far in catholic school.)
“The voice of one crying in the wilderness”
From John the Baptist preaching the Book of Isaiah.
And here I thought those classes would never come in handy 🙂
to bdillon, Dr Barton has supplied the correct translation to the oft quoted Latin phrase. I do think of myself as one who keeps bringing up issues but no one is listening. The 4th estate is indeed the media. It has gone out of fashion to write pensive pieces. TV wants the 7 second sound bite. We need to lower the heat and raise the discussion. Where is William Buckley when we need him? His program Firing Line brought great debate for over 20 years. Nothing has surfaced to take its place. I would love to host a rebirth of that program. Greg
It has been my understanding for many years that physicians are not only allowed, but obligated not to provide care that is futile. We know enough about the stats on resuscitation of the elderly to know that resuscitation for the very elderly is indeed futile. No lack of a DNR form changes that.
Response to Dr Bernhard, Amen brother. Last year American Heart stopped mandating atropine in cardiac arrest. While they were at it they should have done the same with epi (remember high dose epi. what a crock!)and while we are at it we need to deep six everything else in the drug box intended for end of life cardiac arrest. What we need to do is stop doing CPR at all except in selected cases. The problem is CPR has moved from being a science to being an industry. There are more people making money with it than dying from it. Stop the public insanity. Greg
I agree with your comments and recently wrote a blog you might enjoy and agree with, titled: 10 reasons why its wrong for me to do chest compressions on your 90 year-old grandmother!
http://www.oktodie.com/blog/37-10-reasons-why-its-wrong-for-me-to-do-chest-compressions-on-your-90-year-old-grandmother
Whether we as individuals choose to ‘rage against the dying of the light’ as Dylan Thomas would have it or ‘pass mildly away’ as John Donne would seem to suggest, all will travel to Hamlet’s undiscovered country.
As physicians we should hearken to Dr. Henry’s voice calling us to prepare the way. We should prepare our patients for and allow a good death. Reading Dr. Murphy’s book and learning about the POLST paradigm are two good ways to start.
Dr Bernhard.Your piece is worthy of wider circulation. I have no idea why this issue has not gotten more attention. One reason may be no one ever got promoted by studying doing nothing but comfort care.
Looking to buy the book in large print… Please advise.
I would like to add that Chaplains and Pastoral Care ministers would benefit greatly from this book–as we are witnesses to many of these heroic and insane procedures. We are the ones that have to deal with the families that don’t understand what’s going on, because the Dr. and nurses did NOT communicate at all or in a language they could understand. I personally witnessed a 95-year old receiving CPR for well over 15 minutes, who experienced internal bleeding and broken ribs!I watched in disbelief!I applaud your book and have already recommended it to seminary students & Professors as well as hospital depts.
I have a good friend, aged 102 who is “ready to go” and she is not enjoying life. Her mind is sharp, but she is legally blind and very DEAF and I told her, euthanasia is legal in Oregon and Washington States. Would the right thing be, for her grown son (a lawyer) to take her up to one of those states, to visit a doctor who assists in euthanasia or could you send me an address or email address so I can find out more for her. Thanks. This is a subject that definitely needs to addressed I’d like to read the book and will send for a copy of it. She would need a “talking book” but I could tell her what she needs to know. She has lived alone since her husband died, many years ago.