End-of-life care and the need for professional activism   2 comments

This post is proceeded by a short case vignette to help frame the discussion that follows.

An 85 year-old man is brought to the hospital with a fever and found to have pneumonia. The man had been diagnosed about six months ago with an incurable form of leukemia, a cancer of the bone marrow. Because of his age and medical history, his pneumonia quickly leads to respiratory failure and he is admitted to an ICU for mechanical ventilation and other critical life-sustaining measures. Over the next few weeks, the patient’s overall condition failed to improve and he suffered a number of further physiologic insults. He became anemic and was transfused two units of blood. The patient then got a bladder infection that resulted in sepsis which caused the patient to cardiac arrest before being successfully resuscitated. After all of these events and the patient’s stable but poor condition, the medical team faced a difficult situation where the patient was too sick to be transferred to a long-term acute care facility but also had little chance of significant improvement. Given the current findings and poor prognosis, the medical team asked the family to reconsider the patient’s status as a “full code,” requiring all life-sustaining measures in the event of further cardiac or respiratory failure. The family felt very strongly that “ALL” medical efforts should be afforded to the patient and refused the medical team’s request. An ethics consultation was called by the primary team.

It is estimated that better management – meaning less aggressive – of patients’ care in the last six months of their life could save $700 billion of U.S. healthcare spending, one-third of the total annual spending on healthcare. Currently, the irreconcilable differences around end-of-life decision-making problems outlined above are handled by hospitals with the use of “ethics consultations.” An ethics consultation typically triggers a review of a patient’s case by a member of the hospital’s ethics committee who has been trained to use the four principles of medical ethics to reframe a particular ethical problem and provide a recommendation for moving forward. For example, in the case above an ethics committee member would highlight the balance that must be struck between the patient’s (and family’s) autonomy to make their own medical decisions versus the continued use of limited healthcare resources on a patient who will never be independently functional and suffering a series of interventions that are likely only prolonging the patient’s guaranteed death from his cancer. The intended purpose of such an exercise is that reframing the discussion in a more analytical manner may help the family or the medical team better understand the other side and highlight a potential resolution.

However, the major limitation of the ethics consultation is that its recommendations are not legally binding and therefore truly irreconcilable differences can rarely be solved by the process. When some form of cooperative agreement cannot be reached, the ethics committee has no power to enforce a recommendation on either party. Published reviews of the history of end-of-life care and medical ethics have highlighted the limited legal protection for either hospitals or patients with end-of-life care as a major hindrance to the available options for resolving these differences of opinion. Without strict legal guidance, hospitals have been forced to utilize a quasi-legal “fair process” system when faced with patients and decision-making surrogates who insist on continued care that has become medically futile. Fair process for withdrawal of care involves an onerous series of consultative steps that requires a medical team to explore alternative care options that include cross-specialty consults, an ethics consultation, an attempt to transfer to another hospital service, and an attempt to transfer to another hospital before being able to cease futile medical interventions. It is important to note that these safeguards are necessary, but only because the government has failed to legislate a more streamlined process of ceasing futile care efforts.

While it is probably unsurprising that legislators have been wary to pick up such a hot-button political issue – particularly after the pillorying of “death panels” during recent healthcare debates – my greatest disappointment lies in lack of professional association’s attempts to fill the void. Although recommendations from professional groups like the Society of Critical Care Medicine or the American College of Physicians may not carry legal weight, such professional association guidelines are regularly used in medical malpractice cases to demonstrate whether a physician’s actions were considered “standard of care.” The issuing of such guidelines by professional organizations would provide the kind of backstop needed for physicians to more comfortably navigate ethical dilemmas like the one presented above. To date, the only national physician’s organization that has provided public recommendations  for withdrawal of care is the American Society of Nephrology with a particular focus on withdrawal of dialysis for kidney failure. In the present political climate, further efforts to manage end-of-life care will need more physician and patient groups to publicly take a stand on what qualifies as appropriate care. Without such courageous steps, end-of-life care will become a further emotionally destructive and financially untenable part of our healthcare system.

Disclosure: I have no conflicts of interests with regard to end-of-life care and medically futile interventions.

2 responses to “End-of-life care and the need for professional activism

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  1. A colleague of mine on LinkedIn raised the following issues: 1) how can it be predicted when a patient hits their “last 6 months of life”? 2) how do politicians handle any public disapproval of government measures to address end-of-life care? I think both of these question are great follow-up items to explore in more detail, but I will try to summarize my response to him here.

    The “Last Six Months”
    Focusing conversation around the “last six months” is more of a policy tool than a practical matter. The New York Times article that is cited in the original blog post uses the metric because it has been popularized by a number of important researchers including the Dartmouth Atlas of Health Care. The key point of Dartmouth’s contribution to end-of-life care is that there are grossly disparate costs when one looks at individual hospitals’ spending in the last six months of life (e.g., UCLA Medical Center is highlighted for its unusually high costs of care during the last six months of a patient’s life). That suggets that providers in different care environments are choosing varying levels of intensity of care. Most would argue that the most aggressive care environments are probably over-treating patients whose quality of life has little to no chance of improving. An important point that has been lost in much of the American healthcare debate is that “better” care does not always mean more care.

    Political Blowback
    The “death panels” debate in the American political discussion of recent years highlights just how dangerous it is for politicians to wade into this discussion. My prediction is that any solution that develops around end-of-life care will only involve legislation at the tail-end. In other words, professional associations, hospitals, and other healthcare experts will need to step forward with end-of-care standards that are then refined with iterative public consultations. Only at the end of such a process might government be helpful to consolidate legislative efforts are formalization of these standards into law. End-of-life care is too much of a hot-button political issue and a fairly complicated technical discussion to expect good policy-making to originate from legislators.

  2. Pingback: Year in Review – Best of 2012 « Blue Oceans for Health

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