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In a recent story in the New York Times, Katy Butler described her parents’ experiences with illness, the health care system, and the decline of her mother’s well-being in-step with her father’s physical and cognitive decline.

Butler’s beautiful account of her parents’ lives before the onset of illness and subsequent to her father’s stroke, pacemaker placement, and progression to advanced dementia and frailty are moving in the human story alone.

But what struck me in reading the story, and some of the hundreds of comments which were posted from readers, was that this story is not just about pacemakers, health care costs, and the age old conflict between the risks and benefits of medical interventions and appropriateness in individuals of a given age or level of frailty. A retired cardiologist commented that the pacemaker was not, as with a defibrillator, keeping Butler’s father alive (in what Butler described as his final years in “purgatory”) but was regulating a bradycardia which might otherwise have given him significant symptoms (although prior to the pacemaker placement, Butler noted he was asymptomatic). What I learned from this remarkable story was that a focus on pacemakers as something which could be perceived as a ‘life-sustaining’ intervention is too narrow a view of Butler’s story. I have begun to question our medical and cultural perspectives of distinguishing between medical interventions which are procedural (such as device placement, CPR, surgery) and those which are pharmacologic.

If one considers ‘life-sustaining’ treatment, one often encounters the standard list: CPR, mechanical ventilation, pressors, defibrillators, dialysis, etc. When we discuss ‘end of life’ care and ‘advanced directives’ we naturally primarily discuss significant interventions such as these. But medical illness, and an individual’s experience of illness or decline, will often bring the individual to encounter the less procedural (eg pharmacologic) treatment modalities earlier. We generally don’t question Jehovah’s Witnesses’ choice to avoid blood products. And we generally don’t question a preference for ‘no-code’ in a patient with terminal cancer. The classic tension in choosing pharmacologic treatment or not in a life-death situation is with chemotherapeutics in patients with cancer. But reading Butler’s article, I began to see her father’s story as one not just about the appropriateness of a pacemaker and the ethics of when and how to turn one off. I began to see the story as the tug and pull between medical science/technology and ‘natural death’ (however a given individual defines it).

As physicians, as practitioners of medicine, we have been trained to try our best to diagnose and treat illness, discomfort, debility. But where do we draw the line (the distinction) between what we think we should do medically for a patient, what medicine can scientifically do for a patient, and what a patient wants for his/her own life and death. Someone choosing to die without life support in the comfort of their home and after stopping extraneous medications which do not promote comfort (the usual hospice picture) can be seen as choosing a ‘natural death.’ But do we draw that distinction only at the, quote “end of life”? Do we discuss ‘natural death’ only with those who are ‘approaching their final chapters?’ What does natural death mean? All illness may not lead to death. But certainly many diseases and conditions, if untreated (or suboptimally treated) will lead to further morbidity and possibly death. Perhaps our patients who avoid medical care and medications for their hypertension and diabetes are telling us they want to live their life ‘naturally’ (with all the risk and future burdens of these conditions). We are quick to judge these patients as ‘non-compliant’, or perhaps more empathically ‘needing more education, guidance, patient-centered direction.’ But I think about my patient with angina and coronary artery disease who is knowledgeable and cognitively competent who chooses to live his life with yoga, herbals and holistic modalities. No aspirin, no beta blocker, no statin. Perhaps he, just like Butler’s parents, is choosing his ‘natural’ course to life and death. And, thus, medications and procedures suddenly become one. How an individual defines life-sustaining could start with carvedilol and atorvastatin.

I recognize at this point someone will undoubtedly point out to me that the risks and side effects of procedural interventions far outweigh those of most pharmacologic interventions, and that is why we tend to distinguish between a pacemaker and aspirin. As with all things geriatrics and palliative, there is no right or wrong answer. But the more I care for patients at different stages of their lives (whether a frail 66yo, a robust 85yo, a dying 73yo), the more I realize that I’m generally not the one who defines where living and dying blend and where ‘natural death’ begins (if ‘natural death’ is what my patient chooses).

by: Helen Kao

This Post Has 5 Comments

  1. I cried a little after reading this memoir. The pacemaker was certainly a metaphore for life-sustaining treatment, and perhaps unfairly became the focal point of the author's angst.

    But the source of the author's angst – as you note Helen – is that physicians failed to see the big picture here, and were too caught up in their narrow fields of expertise. Respecting her father's previously expressed values and wishes meant stopping measures that might prolong his life, including (perhaps) turning off the pacemaker.

  2. I am very saddened by this article and the misrepresentation it creates. A pacemaker should not be compared to life-sustaining treatment. My father has had a pacemaker for 25 years and has lived a normal life. He was already 63 years old when he got it.Can you imagine if we had decided that he shouldn't get a pacemaker because he is already an old man? What will be next? Hearing aids?

  3. This article highlights exactly what heppens when we, as practitioners do not take a patient-centered approach. There is a reason that the courts uphold autonomy and there is a reason that informed consent is a legal requirement. A signature on a paper is consent, but informed consent is so much more…

  4. Dear Helen,

    You put this so eloquently. I agree wholeheartedly with what you are saying.

    It is now my lifes work. I feel nurses are more well versed in this understanding that quality of life far outweighs quality of life.

  5. As a palliative Care NP this is the questions we face every day. What is quality of life? Not for us, not what WE think it is but that of the patient. I think we should have that conversation with everyone so that we are supporting their goals.
    As providers we are obligated to provide the best care possible. But I agree, not always with technology, pharmaceuticals, or the latest greatest advances in medicine. I often see conflicts of the providers goals and the patient's goals and you bring up a great point, who is driving the care.

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