Burdening families with CPR decisions in the face of futility is cruel

Those who know and work with me have heard me state without hesitation that it’s morally wrong to do CPR on 90-year old great grandmas. So, it was with great relief that I read the “Do Not Offer CPR” option in a recent JAMA article urging a revision of our present approach to the use of CPR for those who are unarguably at the end of life.

This is a change from the present expectation of CPR no matter what, to a set of recommendations that incorporates the question of whether CPR “harms or helps” individuals. Finally, some sanity.

Medicine attempts to balance patient autonomy with the grand directive: “First, do no harm.” Recently, I have also discovered that as a doctor, it is also my job “to do no harm” to the families and surrogate decision makers of those in my care.

Last week, I learned that even asking families to make CPR or DNR decisions in the face of almost certain death creates unnecessary harm for them as well. In the following case, I created a decision-burden for a family that they neither wanted, needed, nor could handle—a decision-burden that would not change the outcome (death), yet would likely trouble them for the rest of their lives.

This case drove home to me another compelling reason why CPR should not be offered to those who are imminently dying: not only does the act of CPR harm the dying patient, the actual act of asking the families to make futile CPR vs DNR decisions harms them as well.

Mr. Gray was an 80-year old great-grandfather of 12. For years he had taken a blood thinner for his heart condition, without any complications, until 3 days before I saw him.

3 days prior, he had fallen and hit his head, developing a large bruise across his forehead. Despite his family’s urging, he had not gone to a doctor to get it checked out. Instead, he went about his daily activities, bothered only by a mild headache. This headache suddenly became severe on the 3rd day and he began to vomit. Immediately after vomiting, he became confused.

No more messing around, the family called 911. Mr. Gray was now too confused to argue or refuse a medical evaluation.

EMS loaded him up easily enough though, and told the family to follow them for what would be a short ride to the hospital. The ride was short enough, but something terrible happened during the transport-Mr. Gray fell unconscious and stopped breathing.

What ensued on arrival to my ER was high-end aggressive emergency care: he was intubated, placed on a ventilator, we placed multiple IVs, gave mannitol, ordered emergency plasma and ran with Mr. Gray to the Cat Scanner, all within minutes.

I tapped my foot impatiently awaiting the images of his brain to load up on the computer.

“Darn it,” I muttered when I saw the pictures confirming what I had already clinically diagnosed and begun treating. A large hematoma had developed on his brain. According to the radiologist there were already signs that his brain was herniating.

Just then, I got a call from the lab. Mr. Gray’s blood thinner levels were toxic. It would take hours to correct this before Mr. Gray could even go to surgery, and what Mr. Gray did not have was hours to wait. What he did have was a large, loving and very concerned family whom I had yet to talk to in detail.

I spoke with the neurosurgeon before I gathered this family. The specialists said that due to the blood thinner toxicity, the delay would most likely make the injury unsurvivable — meaning, we expected him to die.

I let out a long sigh and said, “Yeah, that’s what I thought.”

Hanging up the phone, I braced myself to talk to the family.

When I walked into the family waiting area it seemed to be standing room only. I asked those who could to take a seat. Sitting or standing, everyone leaned forward, anxiously, with expressions mixing dread with hope.

No matter how many times one has done this, these conversations are never easy. First, I gave the general explanation of what had occurred and how bad things looked for Mr. Gray. I explained that surgery to remove the hematoma could not be performed until the blood thinner problem was corrected and that this wait would most likely prove to be “too long” for him.

Tears began to flow. Children grabbed the hands of parents and siblings looked at each other in shock.

Next, I outlined all of the “doctor-driven” decisions that would be made and explained possible outcomes. If A happens then we can do B, but if C happens then B is not an option.

Then, finally, I laid the most serious decisions on them. How would Mr. Gray die, when his time comes? Would they allow natural death by withholding CPR? Would they request an attempt at CPR? Finally, would they consider withdrawing artificial life support measures.

Already grief-stricken, I watched their eyes glaze over in fear and pain as I gave them these final options and explained that eventually we would need to have a family decision on these choices (in the absence of a pre-selected decision maker to speak for Mr. Gray).
Looking around the room at heads hung low, there was deep silence. I stared at my feet, not looking at them in an attempt to give them space for thought.

But in that quiet moment, something shifted within me. I began to feel ashamed that I had even asked such questions at all. In that moment, I began to understand that the burden I had given them was too great and complex. I was asking them to participate in choosing his death, a task that they clearly did not want- something they obviously had never discussed. And, saddest of all, after pressuring them for an answer, this answer was not going to change the outcome for Mr. Gray-he was still probably going to die and all that they would have gained from this situation is a persistent guilt burden about whether they made the right choice or not.

Suddenly, it became so clear to me that this should not even be their burden at all. In that moment, I grew to understand that it was wrong to even ask families to make such decisions in futile circumstances – that should be my job. I should be the one who guides them through this time by saying, “CPR will not bring him back to who he was, it will not help him, it would only cause us to do further damage to his dying body. Because of this, we will not perform CPR on Mr. Gray when his heart stops, but we will care for him in every other way. We will make sure that he is comfortable and that you are with him. Now is your time to say, ‘Thank you, I love you, and good-bye.’”

I lifted my head. Looking around the room, I saw the strain on everyone’s faces and knew more than ever before that the way we practice end-of-life medicine must change.

Mr. Gray and his family, taught me first hand that it is cruel to burden families with CPR decisions in the face of futility. This type of decision-making should be built into medicine. It should be part of an end-of-life algorithm that is created and supported by the entire medical establishment for 3 reasons in addition to those cited in the JAMA article:

  1. The maxim of “first, do no harm” should be extended to not just the patient, but also to the families of the dying patient in our care. We should not harm their emotional lives and consciences by asking them to make decisions about CPR that are ultimately futile. Such a burden is pointless and creates unnecessary suffering.
  2. The Patient Self Determination Act of 1990 states that a patient or patient representative has the right to refuse or accept any medical procedures offered to them. This is the legislative back bone of modern concepts of patient autonomy. Presently, CPR is the default option and is therefore automatically offered by the medical system. But, as we learned from Mr. Gray and his family, there are times when this is inappropriate.  I support the position of the JAMA article: “Physicians should not offer CPR to the patient who will die imminently or has no chance of surviving CPR to the point of leaving the hospital.” (Like Mr. Gray, whom we expected to die within 24 hours).  Instead, we should spend our energies focusing the patient and families on creating comfort, peace, and closure with their remaining time together.
  3. If the entire medical establishment agrees to create and adhere to guidelines outlining the exclusion criteria for CPR, like exclusion criteria for thrombolytics in stroke, then it cannot be argued that not offering CPR is a violation of patient autonomy. A patient or family cannot demand a procedure that is not offered when it is considered medically contraindicated.

In the end, it is we doctors who need to shoulder the burden of CPR decision making in futile situations. It is the burden for which we were trained, the years of experience caring for the dying, the hours of studying statistics and outcomes. We cannot in good conscience guide all other life-sustaining medical decisions then suddenly shift all death-determining medical decisions back to the family … it is a burden they are not equipped to bear and one they may never shed.

Monica Williams-Murphy is an emergency physician and author of It’s OK to Die.

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  • http://www.facebook.com/people/Steven-Reznick/100000549195050 Steven Reznick

    Your position makes great sense. The problem is what will the lawyers say and do when a loved one stops breathing spontaneously and peacefully?  What will happen when the professional child living out of the area finds out that everything was not tried even if futile. The ” suits” will get involved and change whatever makes sense and is compassionate.

    • karen3

      Hey Steve, you graduated in 1972.  Might I suggest that you are a bit past prime and perhaps you ought to stop sucking up valuable resources yourself???? Interested in reducing your carbon footprint substantially?  Well, maybe some other folks don’t want to either and their families don’t want their last memories to be some doctor with a green eyeshade suggesting the bed might be more profitably used by the next patient so could they all just hurry up a bit more?  You are not far from the age where you get lectures from the doctors about, gee, can’t you stop wasting my time and die. see how much you like it from that end, how dignified and respectful that feels.

  • karen3

    I am glad that you have so much faith in the integrity of the medical profession.  I, and many others, do not.  Since my mother’s death, which was the result of starvation and many, many other deliberate abusive acts of health professionals, I have had myriad others tell me stories of horrible treatment of love ones at the end of life by vulturish doctors.  The wounds and the scars of people who feel that the doctors pushed mom, dad, grandma or grandpa into a premature death because it was more convenient for the medical system are very deep and very painful.  The visceral reaction to death panels several years ago was, I think, a reaction stemming from a deep distrust of the integrity of the medical profession in end of life decision making.  I think you should consider carefully if you are projecting and rationalizing as a way of making your own job easier. Even if someone is actively dying, respect for the family is important, and taking away what little control there  is hurtful. 

    • http://twitter.com/Oktodie OK to Die

      Karen,

      As I stated in response to a previous post of yours, I’m sorry that you were involved in such poorly managed end of life circumstances.

      There are “vultures” in every profession,unfortunately medicine is not exempt (however, in contrast to your idea that “vulture doctors” are those who try to create premature death, I consider “vulture doctors” to be the ones who show up to perform “another” futile procedure on someone who is actively dying– that’s just plain wrong).

      I also hear you saying that we need to revise our whole approach to end of life in the medical system. I couldn’t agree more. I have had end-of-life experiences on both sides of the medical system, both as physician and as family member of a dying loved one. We need to do better, but part of that is doing things right, i.e, not creating needless decision burdens in futile cases such as the one I wrote about in the story.

      We do not sacrifice respect when we explain to the family members of certain stoke patients that their loved one does not quality for a “clot buster”, nor would we be sacrificing respect should we gently explain to a family that “Grandpa is dying now, and instead of me performing bone crushing chest compressions on him, let us go in and I want you to be with him now. Hold his hand and tell him that you love him.”

      I can’t imagine anything more respectful for the patient or the family.

      Monica Williams-Murphy, MD
      http://www.oktodie.com

  • kjindal

    Dr reznick, you are right about the lawyers as an impediment to this approach. Perhaps more of a barrier is the frequent lack of acceptance of the inevitability of death by some families, with resulting ignorant accusations of “death panels” and “abuse” and “starvation” as exemplified by the poster above.

    Unless and until doctors are indemnified for deciding AGAINST the wishes of family to not pursue futile aggressive care, nothing will change.

    • http://twitter.com/Oktodie OK to Die

      kjindal and Reznick, you both make great points which illustrate why the present paradigm is just to go ahead and perform the “CPR procedure” no matter how futile the circumstance. But these are the related questions that I am asking:

      Do we offer thrombolytics to people who do not “qualify” for this intevention in strokes? No
      Do surgeons by default offer surgical interventions that have a resulting 2% survival rate? No

      Do lawyers win cases because thrombolytics are not given to 95 year old stroke victims who are on coumadin? No (because thrombolytic use is CONTRAINDICATED in this case)
      Do lawyers solicit cases in which a surgeon refused to cut out a lung cancer in a patient who is actively dying because the cancer in his brain will kill him by tommorrow? No (because the case is futile)

      So, what I am suggesting is that we band together as a profession and create  policy outlining reccommended parameters for CPR use (Binderman’s article in JAMA is a good starting point for this). There is no reason that CPR use shouldnt be based on reccomendations and CONTRAINDICATIONS, just like other therapeutic protocols, like thrombolytics, therapueutic cooling, etc.

      Monica Williams-Murphy, MD
      http://www.oktodie.com

    • karen3

      And they should never, ever be indemnified for such a thing.  Thank God for lawyers! It’s inevitable that you will die at some point too. Can I starve you against your will???

      • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

        “…..Can I starve you against your will???…..”

        In Holland you can. Though actually, they’re more direct. Starvation takes time.
        http://en.wikipedia.org/wiki/Groningen_Protocol

        Many claim the same is done with adults as well.

  • kjohnso6

    When my father was in much the same situation as described in this article, we learned that being resuscitated in the event of a cardiac or respiratory arrest is not like on TV. It is harsh, violent, and painful. I appreciate this doctor/author’s empathy for the family members and the patient.

  • Liverpoolgirl

    I don’t think the exclusion criteria for thrombolytics can be modeled for CPR.  Exclusion criteria are designed to protect patients from a treatment that may harm or kill them.  The common denominator in CPR is the patient is already dead. CPR may restart the heart but the problems that were there before the patient arrested will remain as well as a host of new problems created by undergoing resuscitation.  Families should have the right to decide how aggressive the care should be up to and including CPR but should have all the information necessary to make this grueling decision.  Dying is very difficult but nearly dying is often much harder on the family.  However removing their decision making is not the right approach.  Thoughtful and frank discussions should be held with the family including what CPR involves and especially quality of life.

    • kjindal

      one party’s having a “right” to CPR is the other party’s obligation to abide by that. But what if the other party (ie. doctors, nurses, etc) do not want to participate in a violent act they know is futile? Should they be forced to, or do they have the right to refuse?

      • Liverpoolgirl

        I have spent many years in critical care and have never been forced to do anything I viewed as unethical or futile. I have provided care including CPR to patients that I knew were going to die but it has often been while waiting for families to arrive or decisions about care to be made. Not to minimize the “violence” of CPR but the patient has died. Some of the care provided to the living causes pain and distress and we are honest in our descriptions to the families. Unfortunately the situation described is the one of the easier situations ethically. There is a lot of grey in medicine and it is extremely difficult to care for someone when a family expresses that their loved one told them they “want everything done” and we know the patient is sure to die. The psychological burden of allowing someone to die is too much for some people.

  • lauramitchellrn

    Families sometimes need “permission”  from physicians and nurses to make these decisions. No code doesn’t mean no care.

    “CPR will not bring him back to who he was, it will not help him, it
    would only cause us to do further damage to his dying body. Because of
    this, we will not perform CPR on Mr. Gray when his heart stops, but we
    will care for him in every other way. We will make sure that he is
    comfortable and that you are with him. Now is your time to say, ‘Thank
    you, I love you, and good-bye.’”

    This is one of the most eloquent things I’ve ever read. It’s gentle, yet realistic. It’s the statement that we longed to give when I worked in critical care.

  • http://onhealthtech.blogspot.com Margalit Gur-Arie

    There is a certain idealization here of the situation where an elderly and previously ill gentleman is found in probably certain life-end circumstance, surrounded by a large loving family. Is this a typical occurrence?
    What about a less idyllic picture? What about a small family, or no family? What about the many instances where prolonging someone’s life in the face of “probable” death, would impose a different kind of burden – a financial one, on the family, or perhaps the entire system? Are we sure that a physician’s responsibility to do “no harm” extends beyond the patient?  And if so, how far does it extend?

    Also, there is in my mind a big difference between not presenting CPR as an option, and presenting CPR as a probably (here’s that pesky little word again) futile option.

  • http://www.caduceusblog.com/ Deep Ramachandran

    Monica, great article. I think you have come to the same conclusion that me and other ER and Critical Care physicians have come to. In such situations, I outline the prognosis as you have, and try to get a feel from the family of where they are in understanding that a loved one is dying. I then make my recommendation of what I would do, and explain what I would not do (CPR and life support) and why. In that way, while I am taking away the major burden of decision making, I’m still giving them power to disagree and make other decisions.
    In the minority of cases where families do want to continue, I always try to be supportive but continue to reinforce the idea of having realistic goals along the way.
    I do wonder about what another commentor mentioned. Some people may be survived by family members who might sue because they disagreed with the decision to withhold therapy. That can happen no matter how eloquent, caring, or correct you are as a physician. I have seen many physicians who do offer the family everything and ask that they choose in order to minimize their own legal risk.  

  • crichardsoncae

    Good points. The key element to me is that this 90 yo senior person and his entire family had blissfully ignored that death is “when” not “if” [the "need to have a family decision on these choices (in the absence of a pre-selected decision maker to speak for Mr. Gray)"]. A better way is to nudge people to accept realistic, finite expectations, discuss their values, and arrive at clear advanced directives. We did this with our children when they were in junior high and that prepared two generations to appreciate each day and bettter accepte a good death. As we all age, we continue to discuss the topic–more openly and comfortably.

  • Sapphire Storm

    I am sorry, I disagree with your assumption that doctor’s must make the decisions about end-of-life medical procedures. I think it is totally appropriate to say: “CPR will not bring him back to who he was, it will not help him, it would only cause us to do further damage to his dying body.”
    But I think that you unintentionally deny the wisdom and intelligence that most people have beyond their emotional attachment to their relative. Truly, it is never up to the doctor to make these decisions~ why? Because it is not their family members, it is not their right. All you can do is offer information and legal choices. This puts doctors in an untenable position of being “all-knowing” and ‘god-like”. That is a perception that serves no one. What would be better is to have the GP inform the patient of the side effects of a drug (I have almost never gotten this information during a GP visit that included a prescription); and it could also help to invite family members to doctor’s visits. This way there is informed decision making that lies with those with whom it *should* lie (in my opinion).
    People are not burdened by these decisions any more than any other medical/health/financial (etc) decision they have to make for a loved one. I would honestly never want a doctor to make this decision for me; I would want information, compassion, empathy…whatever, but not a paternalistic attitude that implied I could not make an informed decision for my loved one. Having been IN this situation a few times, I did not feel uncomfortable with the decisions I chose.

  • Sapphire Storm

    CPR is a quite different procedure than the ones you mentioned. As I have learned, it is not successful most of the time. And if it is; if the family chose this, then so be it. How can the hospital-state rectify letting a person die based on its parameters rather than the family’s? It seems compassionate in one sense, but in another, it seems very “big brother”.

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