Our cultural approach to the subject needs a re-invention from stem to stern (including true euthanasia, thinks I, with a few appropriate safeguards against the impatience of expectant heirs). Instead, we avoid even thinking about it, much less taking steps to ensure that our wishes will be granted -- especially in case we may later be unable to express them. Some religious traditions facilitate that willful procrastination in the belief that choosing the moment of each person's passing is the province of the divine (personally, I wouldn't presume to bother my deity with it ? there must be much better uses of immaculate time and attention).
The Institute of Medicine (an affiliate of the National Academy of Sciences) made a small dent in the problem this week, issuing a lengthy report titled "Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life." The report questions the wisdom of treatment that extends chronological life, irrespective of its quality. It notes that terminal patients typically receive high incidences of preventable hospitalizations. ICU costs often exceed $10,000/day, and treatment is administered by specialists unknown to the patient (if sentient) and by alien machinery.
By contrast, so-called palliative care that focuses on comfort and emotional support is associated with higher quality of the life that remains for the patient. The report indicates that those who receive palliation also may even live longer on average than patients who do not receive such care. That sounds like a pretty good, last deal ? so why isn't it the medical industry standard?
Enter the facts that 1 -- most end-of-lifers are not in a position to make immediate decisions about their care, and 2 -- the 'default mode' of treatment in such cases is 'acute care.' That's another term for multiple procedures conducted in a fee-for-service environment, done most efficiently in a hospital setting. Docs are pretty good at those individual, Small Picture procedures, even if they can be over-zealously performed (e.g., a 60 Minutes report of a pap smear done on a octogenerienne, who was dying of a hospital-acquired infection). The patient's Big Picture interests can get ignored in the process.
Thus, 'advance care planning' is essential to ensure that patients receive the care they actually want, based on decisions they make when they are best able to do so. But we avoid those conversations ? seeing them as 'awfully awkward' when they ought to be considered 'awfully damned important,' instead.
The Report recommends several far-reaching changes to the current medical industry status quo.
1 ? end-of-life patients should be covered by their insurers (public and private) for "comprehensive" care that integrates all their needs: physical, emotional, social and spiritual, with access to palliative care as consistent with each individual's expressed, informed preferences. Palliative care should be coordinated among small-picture experts with the ultimate quality-of-life goal in mind.
2 ? there should be a major push for advance care planning, with quality treatment standards established that are "measurable, actionable and evidence-based." These standards should kick-in as early as children can reasonably make their own decisions, and continue throughout as part of the way folks conduct their whole lives. Clinicians should be responsible to initiate these planning processes, and integrate them into their routine patient relationships.
3 ? The medical Establishments ? from med schools through certifiers to health care deliverers -- should mobilize to develop appropriate training in both palliative care and patient communication skills, both of which are lacking in current curricula and processes.
4 ? policies and payment systems should be brought in-line to respond to patients' "values, goals, informed preferences, condition, circumstances and needs" ? thus reducing acute care crises and unnecessary, non-value-adding expense.
5 ? there needs to be a massive mobilization of "civic leaders, public health and other governmental agencies, community-based organizations, faith-based organizations, consumer groups, health care delivery organizations, payers, employers, and professional societies" (read: 'everybody'), to sea-change our cultural approach to the concept of death. The goal of this national conversation needs to be to encourage conscious, comprehensive and informed consideration of options for end-of-life care.
This is such a rational, sensible, humane and cost-saving set of proposals that the cynical temptation is to conclude there's simply no chance of its coming to pass. I do fear that major obstacles include both inertia, and the fact that SOMEbody is making a potload of money on all that late-inning acute care.
That said, I hope this effort succeeds. In my own perfect world, with those two months left in my local tenure, I'd be presented with the choice of a check for $100,000 and a happy pill on one hand, or some gruesome course of treatment on the other (hold the prostate exam, please). From this vantage, that pill looks pretty good.
In the world that actually exists, I'm calling my doc on Monday. We need to talk.
*Laura Nyro/Blood Sweat and Tears: "And When I Die"
