Doctors and family members often push for futile, aggressive care

Every once in a while, there’s a magazine piece that so encapsulates the key moral issues — and irrationality — of 21st Century medicine that it warrants designation as mandatory reading for anyone who interacts with patients. Atul Gawande has written some of these; so too has Slate medical columnist, Darshak Sangavi.

The latest entry on the required reading list is Katy Butler’s “My Father’s Broken Heart,” which appeared in The New York Times Magazine on June 20th. Butler, who teaches memoir writing in California, describes the seven-year deterioration of her father Jeffrey, a retired college professor. Jeffrey Butler was active and intellectually engaged well into his 70′s. At 79, he suffered a stroke that left him with significant problems speaking, walking and putting on his clothes. Despite his initial determination to overcome the stroke’s aftereffects, he deteriorated, telling his wife, “I don’t know who I am anymore.”

A year after the stroke, Jeffrey Butler developed a painful intestinal hernia that needed to be repaired. As is routine for complicated elderly patients, the surgeon requested a preoperative cardiology clearance. The cardiologist, in turn, refused to deem him stable for surgery unless he received a pacemaker for his slow heart rhythm (which Butler doesn’t describe in detail). This wasn’t the first time the specialist had advised him to get a pacemaker; a year earlier, just prior to the stroke, it had also been recommended, and Jeffrey Butler had refused. But this time, his wife and healthcare proxy, Valerie — who was overwhelmed, fatigued and, most likely, reluctant to impede an urgent procedure that would fix her husband’s pain, consented. The couple’s primary doctor, who knew them well and who had told them a year earlier that he considered a pacemaker “overtreatment,” found out about the decision after the fact, by fax.

The pacemaker insertion and subsequent hernia repair, were, in the short-term, seemingly successful. Otherwise, though, Jeffrey Butler continued to worsen, suffering additional strokes and becoming blind, incontinent, and senile, and developing the personality changes often seen with dementia. Katy Butler painstakingly describes the devastating effect of all this on her mother, who described her life as “in ruins.” Four years after the pacemaker placement, she asked his cardiologist to turn off the device, but he refused, describing it, according to Katy Butler, as something akin to murder. And so, the family’s hellacious existence continued, until Jeffrey Butler died uncomfortably of pneumonia in the hospice wing of a local hospital, eight years after his initial stroke. The cause of his expiration was respiratory failure; his pacemaker continued to work perfectly.

Valerie Butler died a year later, after resolutely refusing open-heart surgery for two leaky valves. At the beginning of the story, she was a vigorous woman who practiced yoga and calligraphy. By the end, she was mentally sharp but physically frail, and had lost her confidence in doctors as healers looking out for their patients’ best interests, instead viewing them, in the words of Katy Butler, as “skilled technicians with their own agendas.”

As a cog in the US medical machine, it’s not difficult for me to envision how all this happened. Taken individually, the initial decisions in Jeffrey Butler’s care don’t seem particularly unreasonable. While Butler doesn’t provide all the details, a painful intestinal hernia is something that needs surgical repair, and, if the bowel becomes trapped and deprived of oxygen, life-threatening. It’s totally understandable that the surgeon would want an elderly patient with known vascular disease to be cleared by a cardiologist before undergoing anesthesia, which can directly affect the heart and blood vessels. Implanting a permanent pacemaker is more debatable, but not totally out of line; even though Jeffrey Butler was significantly impaired after his first stroke, he was still, at that point, able to communicate, walk alone, and participate in water aerobics. It’s therefore not difficult to comprehend the rationale of the consulting cardiologist — who most likely wasn’t familiar with the family’s private pain — in recommending the device.

Unlike many people in this situation, the Butlers were lucky to have a thoughtful primary care doctor, with whom they shared a close personal bond. But as is true too often, the subspecialists left him out of the discussion. Even if they had included him, Katy Butler points out, he would have been “effectively penalized” financially for taking the time to have a lengthy discussion with her parents and coordinate a plan with the surgeon and heart specialist. (Butler also notes that the original health reform bill in the US House did include reasonable payment for such discussions, which were depicted as “death panels” by the bill’s opponents — thank you, Sarah Palin).

Butler points the finger for our fix-it-fast, think-about-the-big-picture-later medical system at the medical-device and specialty lobbies in Washington and the distorted payment system their efforts have spawned, in which doctors get rewarded to do procedures instead of taking the time to communicate effectively with their patients. Despite the reimbursement system’s role in creating this irrational monster, our country’s technology-happy mentality is also to blame. Intertwined with all this is the discomfort many of us have with the end of life, in which death is viewed as a failure. While medical schools have added curricula on this topic, it’s not exactly the focus of their overall educational program.

Doctors aren’t the only ones uncomfortable with death. It’s not uncommon for family members of critically ill patients to push for futile, aggressive care, even if the medical team feels the treatment is simply prolonging the patient’s demise. One friend of mine quit critical care medicine after being forced by family members to keep their relative with end-stage Alzheimer’s on a ventilator. “That’s not why I went into medicine,” she said.

Recently, I faced a situation similar to that of Jeffrey Butler’s doctors. My residents admitted a patient with dementia who briefly passed out and was found to have an intermittent heart block. As is common with many of our patients, he had no primary care physician. Of course, our team called the heart rhythm specialists right away, and they concluded that he was, indeed, a candidate for a pacemaker. But when they called the patient’s brother to get consent, he refused. At the time, I didn’t think much of it; we documented the refusal in the chart, adjusted the patient’s medications, and sent him back to his assisted living facility with a follow-up appointment. After reading Butler’s article, I can’t think of a better solution.

Erin Marcus is an internal medicine physician and writes at New America Media.  This article originally appeared in The Huffington Post.

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  • SarahW

    You mischaracterize Palin’s “death panel” criticism. Reimbursement for end-of-life care discussions with physicians was not the object of this criticism.

    • fam med

      dear sarah w,

      as a board certified fam med doc in solo family practice and who does about 40% of his time in hospice, i considered sarah palins criticism inaccurate and harmful to the healthcare debate. but im open to discussion. could you discuss how the author mischaracterized palins death panel criticism?

    • gzuckier

      True. The mere concept of end-of-life discussions with physicians, whether reimbursed or not, was the object of Palin’s “criticism” (to use the term loosely).

  • Dr Lemmon

    I think when family family physicians have frank discussions about the evidence behind various interventions in elderly patients and elect a conservative approach (with the patient’s blessing) for their patient’s with less medications, less procedures and less screenings that the family physician is perceived as having done what he/she did out of ignorance or laziness. As patient’s get older I think we might be able to change the cause of death, but not the time of death. Often piling on medications to make numbers look better just makes patients feel worse from side effects. I remember once as a resident an elderly patient was admitted with weakness and an inability to walk. The first thing I did was thin down down her massive number of medications by 50%. That did the trick.

  • HJ

    SarahW says, “Reimbursement for end-of-life care discussions with physicians was not the object of this criticism.”

    Sarah Palin-Facebook-August 7, 2009

    ” The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil.”

    Sarah Palin-Facebook-August 13, 2009

    “Yesterday President Obama responded to my statement that Democratic health care proposals would lead to rationed care; that the sick, the elderly, and the disabled would suffer the most under such rationing; and that under such a system these “unproductive” members of society could face the prospect of government bureaucrats determining whether they deserve health care….

    The provision that President Obama refers to is Section 1233 of HR 3200, entitled ‘Advance Care Planning Consultation.’ With all due respect, it’s misleading for the President to describe this section as an entirely voluntary provision that simply increases the information offered to Medicare recipients. The issue is the context in which that information is provided and the coercive effect these consultations will have in that context.”

  • Steven Reznick MD FACP

    End of life issues are always delicate and difficult even when the issues have been discussed in advance, there is a health care surrogate, the documents are current and definitive and the patients and families wishes are known to the physician.
    Recently I had the responsiblity to terminate life supports on a patient of mine for thirty years who had pancreatic cancer. He was at home and became apneic and his aide panicked and called 911.By the time I was made aware of the situation he was sedated on a ventilator in the ER. I spoke to his health care surrogate, we reviewed and read his living will with his son, brother, significant other and best friend. Hospice of the Palm Beaches assisted in waking him up, getting him off the vent so he could verbally say good bye to his loved ones and moving him to a Hospice facility for end of life care. The patient and his surrogate had made our options very clear but the actual task of carrying out his wishes and saying good bye was extremely emotional and difficult for all. The patient hugged me and thanked me for taking charge and honoring his wishes.I knew I had done the correct thing but second guessed my actions for days to come. Deciding when enough is enough will never be easy and always subject to second guessing.

  • Dr. Pi

    Or some patients and/or families have unrealistic faith and hope that “to do something is better than to do nothing”.
    If the alternative is death, for some people even a .05% chance of recovery is a meaningful chance to cling to life. Quality is secondary for this cohort, and very difficult for everyone involved–disappointed patient and family, impotent doctors.

  • anonymous

    the pacemaker is a tiny part of the issue, but i feel like it is being wrongly blamed here. how is it debatable if the surgery itself is not debatable and the pacemaker is necessary to do the surgery?
    the pacemaker didn’t keep him alive, at least not at first. it kept him from suffering more. how much pacing was it doing?

    they fixated on him not needing a pacemaker, and focusing on turning off the pacemaker distracted the family from more important issues (apparently). the patient’s end of life was sad, no doubt, and many readers, no doubt, feel bad that the family and the patient suffered so much. the primary doctor, here might have helped assuage their unhappiness in this area. i will concede that the surgery might have been done with a temporary pacemaker in place, but few surgeons would be happy with the vagaries of the temporary pacemaker. nonetheless, once the pacemaker was in, all this energy directed towards hating the pacemaker was poorly spent.

    if the family’s primary doc is so intune with their needs and desires, why didn’t he just make the patient hospice and palliative care only early on? are we at the point in healthcare reform where we believe the primary doctor’s decision that pacemakers are overtreatment outweigh the specialists expertise? was it overtreatment when the patient was stable or blanket for all situations? why is the story about the broken heart? and not the broken mind/strokes? the dementia? or the respiratory failure?

    • gzuckier

      Yes; the case described would seem a bad example, since, as pointed out, all the decisions made were correct; the most questionable being the cardiologist’s decision to not “pull the plug” on an implanted pacemaker, which does not really seem all that questionable, compared to the decision to not implant one, which in this case would have consigned the patient to an open-ended period of hernia pain. I can’t imagine the decision being made to not implant the pacemaker and let him live in pain, because there’s a chance he might not live all that long.

      It reminds me of a variant on “The Monkey’s Paw”, where the wife, informed that her husband was killed in a car accident, makes the wish that her husband be restored to the state he was in before the crash, forever; unfortunately, before the crash he was having the heart attack which made him crash…..

  • LastoftheZuchinniFlowers

    This ‘death’ conundrum will always be with us. This has been most obvious to me in neonatal/pediatric rescues. OF COURSE we will do Everything and Anything to save young patients with their whole lives ahead of them! I too, have felt heroic after one of these codes. How peculiar then, after spending time in a Pedi-rehab ‘hospital’ (euphemism for pediatric long term care) where near drownings and anoxic encephalopathic babies and children spend their lives on PEG tube feedings, breathing through permanent tracheostomies and enduring endess incontinence…sadness of the highest order. OK – some of these (a small percentage) DO walk out the door subsequent from their ‘near drownings’, those almost always in salinated, cold water, albeit with developmental deficits. And how joyous THOSE discharges ARE! Yet, how many more drowned in their backyard pools while mom and dad said, “I thought YOU had the baby!!!” Only to be ‘recussitated’ in EDs to the self-congratulatory back thumps of the Code Pink teams who never SEE the inside of these Ped-’rehabs?” It’s not always so clear cut as external vs. implanted pacemaker. Our plague as providers? We must always USE rescue protocols, regardless of their origin in various subspecialties. Even in cases of DNR, as the author cites, a code is often called much to the dismay and horror of family who has already crossed that Rubicon. God help us all when all we have is a ‘living will’ and ‘advanced directive’ which is not worth the paper it’s written on in the day to day exigencies of denying death.
    As a parent – I would demand everything be done for MY child, were he/she God forbid, in extremis. But the dilemma remains.

    Finally, Mrs. Palin’s inarticulate commentary on the myriad medical machinations brought to bear in these sad and painful events, once again prove her to be an unskilled user of de riguer sound bites while being devoid of insights vis a vis these complex, ethical events. I refuse to blame the ‘doctor’, my colleagues, or myself. These are not clear cut, ‘best medical evidence’, algorithmic processes. They are the most difficult and gut wrenching processes in medicine and often taken out of our hands even while we labor to salvage what is left of a once viable human being.
    If Mrs. Palin was possesed of ANY insights, she would know (and SHOULD know) what myriad levels of medical, surgical and socioeconomic care are routinely given to babies with trisomy 21 and how, people like her own, seemingly robust ‘elderly’ parents now have greater access to adult care than at any prior time in the nation’s history. That we warehouse our elderly in this country is less a function of today’s political climate than of our national religion which worships youth, beauty and an unlined face instead of wisdom, value and knowledge gained by octegenarians and above.

    Our generation did not invent this problem. We are just the latest to deal with mortality – our dreaded enemy. Many Eastern societies REVERED and paid obesiance to their elderly – yet permitted ‘Down’s’ and other anomalous babies to perish from their concomitant cardiac and/or other major organ defects.

    We must become more sage in our behaviors, in our use of new medical data gained from the emerging field of Genomic Medicine AND in our innate motivations which led us to this honored career path. We’ve lost our way in a manner inversely proportional to our knowledge gained.

    • gzuckier

      Yeah, really; how often do doctors suggest some variant of benign euthanasia for Down Syndrome/Trisomy 21 kids nowadays? Quite the opposite, I would think, as medicine has made great strides extending these kids’ life spans, as well as mainstreaming their lives to a large degree. I’m pretty sure that’s also the case in those “Socialist dystopias” like Canada.

  • Molly Ciliberti, RN

    Some times the correct diagnosis is “dying”. I can only hope to die quickly at home so I don’t wind up in an ICU (the last place on earth that I want to die; I know I used to work there.) Not wanting aggressive care is often the sane choice because the quality of life is so poor and may only get worse with the aggressive treatment. I guess I will have to have DNR tattooed on my chest after all, just in case my family isn’t available to say leave her alone!

    • jp

      I’m a GP and i totally agree- please spread the word to patients and the public that doing more is not always better.
      I love the tatoo idea!

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