Artificial death extension: It means that I actually care

The names of things often greatly affect our perception. In end of life lexicon, there is a movement underway to change the name of the medical order DNR (do not resuscitate) to AND (allow natural death). No change in the medical reality of what occurs, but a radical change in our emotional reaction to the each term.

DNR: “They withholding a medical intervention” (evoking negative feelings).

AND:  “They are giving care that allows death to occur naturally.”

I certainly feel more comforted and assured by the latter, positive wording, although both phrases constitute the same medical pathway.

Now I am ready to take this a step further, I would like to rename the “full code” pathway for those who are in the final stages of a terminal illness or at the end of a long life. Instead of offering “artificial life support” to these patients, I will be offering “artificial death extension.”

Yikes! Who in their right mind would want that? Or even say such? Now before you think that I’m an insensitive brute let me explain.

Ventilators, central lines, defibrillators.  These are all ethically neutral technologies, but how we use them and how we speak of them carries great power.

When a 30-year old young mother falls over dead in a grocery store from a heart arrhythmia, me and my EMS and intensive care colleagues will use all of the mentioned technologies and more to try to revive this woman back to her middle-of-life, meaningful existence. Make no mistake about it, we will be applying all forms of artificial life support to try to get this young mother’s heart and lungs restarted.

Now in contrast, when a 90-year old great grandmother is brought to my emergency department, and I find her to be paralyzed, unable to speak, covered in bedsores, with a feeding tube taped to her abdomen — for this poor woman, any medical interventions given with the intention of reviving her is really nothing more than artificial death extension.

Does this mean that I care for this great grandmother less than I care for the young mother?

No.

In many ways, I might be more moved by her plight. Frequently, I feel a deep grief and almost a love for my frail and elderly patients whose well-meaning families have made choices that have allowed them to enter such a state of prolonged suffering. I want to give these patients my best comfort-focused care.  I want to clean their wounds and apply soft bandages, to wet their dry lips and to give them pain medications for their stiff limbs and open sores.

What I do not want to do to these patients are medical procedures which will create more suffering or to prolong that which already has gone too far. For these great grandmothers, ventilators, central lines and defibrillators will not bring them back to a comfortable and meaningful end-of-life experience: they only will make matters worse.

So now, when speaking to the families of the very frail, elderly and those with advanced terminal illness, I talk about two end-of-life pathways from which to choose:

1. Allowing natural death. Focusing on medicine that creates comfort and peace when active dying begins.

2. Artificial death extension. Medical interventions which could create unnecessary suffering and prolong the dying process for an already dying loved one

Changing from DNR and artificial life support to AND and artificial death extension doesn’t make me a brute. I think it means that I actually care.

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

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  • http://www.facebook.com/profile.php?id=614010948 Earl Smith

    Thank you for this blog. I tip my hat to my ER colleagues, who will see many many more Pal Care patients than I will as I round on a busy Pal Care in-patient service. To change the “meme”, I always write in my notes “Patient’s family have requested AND (allow natural death = DNR).”
    I agree with Dr. Williams-Murphy–we can get the jargon changed, one epiphany at a time.

  • http://asourparentsgrowolder.com/ Mike Gamble

    We all tend to forget that our choice of words can evoke dramatically different emotional responses. Pollsters, marketers and politicians — especially politicians — use this fact to manipulate their audiences emotionally. For example, while the underlying facts are identical, Americans overwhelmingly accept the new Health Care Reform law, but reject the same law when it’s called Obamacare. Similarly, the term “end-of-life-discussions” is accepted as being emotionally neutral whereas “death panels” is a highly-charged, negative emotional term.

    I fully support the use of AND (compassionate) to replace the current DNR (somewhat cold-blooded and final), even though the results are identical. However, I disagree somewhat with replacing “artificial life support” with “artificial death extension.” “Death” is a highly-emotionally-charged” word that most Americans try their very best to avoid thinking about it because it is so final. It is for that reason that I believe “artificial life support” will be much more acceptable to the American public.

  • Kevin T. Keith

    I sympathize with the concerns expressed here, but I think your suggested remedies are problematic.

    First, the language used is clearly emotionally manipulative. You are deliberately trying to shade decisionmakers’ perspectives and emotions in the direction of the decisions you approve of, rather than simply providing information.

    Second, the terms you use seem, arguably, even more euphemistic than the ones they replace. Allowing “natural death” is possible only if the death is “natural”. Once a patient is on an extensive supportive regimen, any change in their condition is mediated by the technology and treatment given them. Death cannot “just happen” under those circumstances; the final pathway to death is one chosen for and determined by the treatment team. Some natural process finally causes complete systemic failure, of course, but that process is not the same as in a patient not on life support. You cannot evade your own participation in that process by calling it “natural”, or claim that withdrawing life support or withholding resuscitation is simply a natural process that is not the result of conscious decisions and actions on the part of the treatment team and decisionmakers. “Artificial Death Extension” is far worse. “Life support” – though that term may generate inappropriate optimism – is a factually descriptive phrase. The technology used supports the patient’s vital functions, and while they are supported the patient is alive. Death is a specific process and event – death does not occur until life functions have ended, not while they are ongoing. Providing life support extends life; it does not necessarily extend death (most patients on life support are not actively dying, even though they might die without that life support). Almost everyone declines in the final years of their lives, but we do not say they are “dying” until they undergo an irreversible downturn at the very end. Life support may maintain a stable physiological state for years; calling that “dying” is simply misleading and gruesome. And even when it extends the period of active dying at the very end of life, that fact can only be possible because it is supporting life and putting off death, not the opposite.

    Finally, this essay is completely devoid of any mention of the patient’s own values. As has been extensively discussed in this context, patients may have different reasons for wanting or not wanting life support. Some may find great value in extended life of any kind, however diminished. Some may prefer to terminate support even when they might otherwise have survived for a long time. The goal should be to provide patients with clear descriptive information, helping them understand what choices are available to them and what the result of each one is likely to be – with specific regard to the goals or values the patients are trying to serve in making those choices. There is no obvious right answer for any patient, regardless of age or condition, until it is known what that patient wants, and what their values and priorities are. A debilitated 90-year old woman (why it’s relevant that these women are “mothers” or “grandmothers” is not clear to me) may very well choose to cling to life even through extreme discomfort, and it’s her right to do so. It’s not always true that a 30-year-old woman necessarily wants aggressive intervention.

    Attempting to make others’ decisions for them by euphemistically shading their comprehension of their options is not a service to them, and treatment descriptions deliberately worded so as to influence, not support, the patient’s decisionmaking are not compatible with the bedrocks of clinical ethics: autonomy and informed consent.

    • buzzkillersmith

      Manipulation and influence are inevitable in this situation, as in just about every medical encounter, because of asymmetry of knowledge and experience. The physician has a duty to act in what he or she thinks is in the best interests of the patient, and having seen a lot of pointless suffering in patients who are destined to die very soon, we should influence people to try to avoid this. If that’s manipulation, I hope someone manipulates me when the time comes.
      Certainly your concern with patient autonomy is valid, and I for one who never issue a DNR order for anyone if the patient refuses. If the patient is incapacitated and has left no instructions, I ask the family.
      Sometimes you have to put the pt on the vent, bp support, etc., and give the pt or the family time to see how these things go. After a while they often prefer to withdraw therapy.

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

      Kevin

      Thanks for your detailed thoughts on this subject. Since
      this essay is narrowly focused on magnifying the power of our words, you do not
      know my true and whole position.

      In my book, “It’s OK to Die”, I write extensively about the
      supreme importance of true informed consent, patient autonomy and self-determination.
      My typical pattern of communication with critically ill patients and families
      usually begins with raw data, an explanation of what the data means and a
      neutral discussion of medical options available. Then, I explore the goals,
      wishes, values of the patient and try to explain which medical therapies most
      likely support these. Finally, I talk to them about the implications of choices
      and alternative meanings of the medical terms we use. Then usually, they begin
      to ask deeper questions. Sometimes they spontaneously ask me questions like, “So,
      if we removed the ventilator and the blood pressure support medications, and he
      was just on his own, ‘naturally’, would he be dead?” Other times they simply
      ask, “What do you think, doctor?”

      It is at this point that my words matter most. Although you
      argue that my explanations are too opinionated or too simplistic, it is at this
      juncture that the patients and families want to hear me speak from the heart in
      manner they understand. If I have established myself as someone who is
      trustworthy and compassionate, they want to know what I would do for my own
      family member and what I have seen over my years of practice. They are exactly
      asking me for simple and straightforward opinions. People often resonate with these
      opinions, such as explaining that choosing aggressive interventions on
      debilitated nursing home patients may only prolong suffering and delay
      inevitable dying. Further, these opinions must be delivered in terminology that
      they can understand, which may in fact be over-simplified according to logician
      standards.

      Our patients want and need doctors who are willing to enter
      into the struggle of medical-decision making with them, to share their opinions,
      but ultimately, to help them find a choice that is right for their minds and
      hearts. This is less easily accomplished if the doctor acts as a neutral
      repository of medical data alone.

      Thanks for your analysis. We need more people thinking broadly
      about how we communicate at the end of life across the board.
      Monica Williams-Murphy, MD

  • karen3

    All I have to say is that people like you are why my family will never, ever voluntarily go to an ER, even if dying. Dear god, I can’t think of anything worse than having a manipulative grim reaper hovering over me trying to get me to die faster. Sick, just sick.

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

      Hi again Karen,
      We have had this discussion before and you know that I am not a grim reaper. I sit for long periods of time at the bedside of my ill patients trying to know their true hearts desire about quality of life and creating a peaceful dying process when that inevitable time comes. I do not control the process, the patient does.
      I also surmise that you had a very bad experience once with a critically ill loved one and I am sorry for that, but that does not mean that all doctors are uncaring brutes (although you are free to hold that opinion if you’d like).
      Monica Williams-Murphy, MD

    • Sandy

      Karen,

      The day when you have a loved one suffering from a terminal disease is the day when your opinion of self-righteousness will change.

      The reality of the day is that “most” people would prefer to die with dignity!

      Sick? No, I don’t think so… it’s just a necessary part of the human condition!

      BTW, if you’ve ever had a pet and it was suffering… what would you do?

      Would you let it suffer?

  • leslie fay

    As as respiratory therapist of almost 40 years I believe that the American public needs a serious wake-up call. They think dying is optional and everything can be fixed like it is on television. When doctors say do you want us to do “everything” no one has a clue as to what that means. Everyone envisions that a few days in the hospital and the patient will be as good as new. The doctors needs to say something like “your father is dying. We can make him comfortable to ease the process or we can put him on life support and extend the process but he will still die because we cannot reverse his disease process”. Then he needs to indicate that the later is very unpleasant for the patient and that at no point will he be “his old self” no matter what we do. Families really need to actually think about the patient instead of themselves! If the patient has signed a DNR(whatever it happens to be called)then the family should be encouraged to respect that wish. The VAST majority of families override a patient’s wishes frequently due to their own gult, ignorance and last but certainly not least, greed. Personally, I feel that it should be illegal for anyone to override a patient’s personal choice.
    No matter what having to make such a momentous decision at warp speed will always be difficult which is why everyone should discuss their wishes with their family and have all of the legal paperwork taken care of well in advance.

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