Far too many people reach their advanced years without planning for how they want their lives to end. The result too often is needless suffering, reduced dignity and autonomy, and agonizing decisions for family members.
Addressing these end-of-life issues is difficult. Most of us don’t want to confront them for ourselves or our family members. And until recently, many people resisted the idea of reimbursing doctors for end-of-life counselling sessions. In 2009, Sarah Palin labelled such sessions as the first step in establishing “death panels.” Although no such thing was contemplated when Representative Earl Blumenauer (D- Oregon) proposed such reimbursement, the majority of the public believed that death panels and euthanasia were just around the corner. Even the Obama Administration subsequently backed away from efforts to allow such reimbursement.
Fortunately, this is now history. In the past year or two the tenor of the debate has shifted toward greater acceptance of the need to deal openly with these issues. At least three developments illustrate the shift.
First, talk of “death panels” has receded, and new regulations, approved in late 2015 to take effect in January of this year, now allow Medicare reimbursement for end of life counselling. The comment period leading up to this decision was, according to most accounts, relatively free of the divisive rhetoric characterizing earlier debates. Both the American Medical Association and the American Hospital Association have signaled their support.
Second, physicians are increasingly recognizing that the objective of extending life must be balanced against the expressed priorities of their patients which often include the quality and not just the length of remaining life. Atal Gwande’s best-selling book, Being Mortal, beautifully illustrates the challenges for both doctors and patients. With well-grounded and persuasive logic, Gwande speaks of the need to de-medicalize death and dying.
The third development is perhaps the most surprising. It is a bold proposal advanced by Governor Jeb Bush before he bowed out of the Presidential race, suggesting that eligibility for Medicare be conditioned on having an advanced directive. His interest in these issues goes back to the time when as governor of Florida he became embroiled in a dispute about the removal of a feeding tube from a comatose Terry Schiavo. Ms. Schiavo’s husband and parents were at odds about what to do, her husband favoring removal and her parents wishing to sustain life. In the end, although the Governor sided with the parents, the courts decided in favor of the husband and allowed her to die. If an advanced directive had existed, the family disagreement along with a long and contentious court battle could have been avoided.
The point of such directives is not to pressure people into choosing one option over another but simply to insure that they consider their own preferences while they are still able. Making this a requirement for receipt of Medicare would almost surely encourage more people to think seriously about the type of care they would like toward the end of life and to talk with both their doctors and their family about these views. However, for many others, it would be a step too far and might reverse the new openness to advanced planning. A softer version nudging Medicare applicants to address these issues might be more acceptable. They would be asked to review several advance directive protocols, to choose one (or substitute their own). If they felt strongly that such planning was inappropriate, they could opt out of the process entirely and still receive their benefits.
Advanced care planning should not be linked only to Medicare. We should encourage people to make these decisions earlier in their lives and provide opportunities for them to revisit their initial decisions. This could be accomplished by implementing a similar nudge-like process for Medicaid recipients and those covered by private insurance.
Right now too few people are well informed about their end-of-life options, have talked to their doctors or their family members, or have created the necessary documents. Only about half of all of those who have reached the age of 60 have an advanced directive such as a living will or a power of attorney specifying their wishes. Individual preferences will naturally vary. Some will want every possible treatment to forestall death even if it comes with some suffering and only a small hope of recovery; others will want to avoid this by being allowed to die sooner or in greater comfort. Research suggests that when given a choice, most people will choose comfort care over extended life.
In the absence of advance planning, the choice of how one dies is often left to doctors, hospitals, and relatives whose wishes may or may not represent the preferences of the individual in their care. For example, most people would prefer to die at home but the majority do not. Physicians are committed to saving lives and relatives often feel guilty about letting a loved one “go.”
The costs of prolonging life when there is little point in doing so can be high. The average Medicare patient in their last year of life costs the government $33,000 with spending in that final year accounting for 25 percent of all Medicare spending. Granted no one knows in advance which year is “their last” so these data exaggerate the savings that better advance planning might yield, but even if it is 10% that represents over $50 billion a year. Dr. Ezekiel Emanuel, an expert in this area, notes that hospice care can reduce costs by 10 to 20 percent for cancer patientsbut warns that little or no savings have accompanied palliative care for heart failure or emphysema patients, for example. This could reflect the late use of palliative care in such cases or the fact that palliative care is more expensive than assumed.
In the end, Dr. Emanuel concludes, and I heartily agree, that a call for better advance planning should not be based primarily on its potential cost savings but rather on the respect it affords the individual to die in dignity and in accordance with their own preferences.