Martin Luther once said, “Every man must do two things alone: he must do his own believing and his own dying.” A number of profound concepts are embedded in that statement, starting with the unavoidable entanglement between beliefs and the process of dying. Also noteworthy is the explicit recognition of dying as a verb and the assertion that it is something that we do rather than something that happens to us.
Characterized by wide variation in the care of terminally ill patients, the U.S. health delivery system struggles with end-of-life care. Hardly an issue unique to the United States, meeting the needs of the terminally ill and their families represents a persistent challenge for western European health care systems as well. The complex web of psychological and social issues associated with any attempt to address end-of-life care puts us at risk for systemic paralysis unless we can change the tone of discussions from shrill to measured.
Over the next 15 years, nearly 20 million baby boomers will die, most while suffering from multiple chronic conditions which pose significant challenges to the achievement of optimal balance between longevity and quality of life. Most families and virtually every physician have experiences in which loved ones or patients received medical services at the end of their lives that added only marginally or not at all to longevity while significantly compromising the quality of time that the person had left. Such services are often termed “disproportionate” by medical professionals, meaning that the benefits accruing from the intervention are not proportionate to their negative impact on the quality of life.
When asked, terminally ill patients consistently tell us that they prefer to die at home with family, not in hospitals, yet most deaths among the terminally ill occur in hospitals, very often in intensive care units (ICUs). The leading cause of death in ICUs is the decision to stop support, which means that for a significant number of terminally ill patients, the interventions themselves accounted for the conflict between what the patient said they wanted and what they actually received. As patients decline, it’s not always easy to keep them at home, especially when they lack a strong family support system, but there is an enormous gap between what terminally ill patients ask for and what we eventually provide. We need to narrow that gap.
The autonomy of a dying patient, specifically their right to refuse treatment that is in their eyes “disproportionate,” confers on a different patient the right to demand interventions which their physicians believed held no reasonable expectation of benefit. Whether arising from misinformation or misguided expectations, the demand for virtually unlimited interventional measures at the end of life has implications for an individual’s quality of life as well as broad societal impact. In the extreme, such patient autonomy could lead to demands which conflicted with the physician’s ethics.
The doctor-patient relationship is best viewed as a partnership in which the autonomy of each partner is respected and preserved. Patients have the autonomy to accept or reject services based on their assessment of the proportionality between benefits and adverse impacts on their quality of life while physicians retain the autonomy to reject extraordinary measures that do not offer a reasonable expectation of benefit to the patient.
Physicians die differently than many of their patients; doctors are more likely to have advance directives – clearly articulated preferences with respect to what they want and what they do not want at the end of life. Our bodies work and then wear out. Physicians understand the underlying physiology and are much more likely than their patients to establish advance directives that limit disproportionate measures.
It is possible to expand the use of advance directives throughout the broader population. In a remarkable grassroots initiative spanning over 25 years, more than 95 percent of the seniors of southwest Wisconsin now have advance directives during their last two years of life, and the medical teams who care for them abide by those directives more than 98 percent of the time.
Many patients and their families, as well as a significant number of medical providers, view death as a failure. Human nature likes to win and hates to lose. Palliative care and hospice services are too often viewed as throwing in the towel. Death is equated to losing and physicians often adopt a “not on my watch” perspective that reinforces the predisposition toward disproportionate measures.
The Medicare system contributes to the psychology of giving up by establishing a sharp line of demarcation between benefits for “life-prolonging” care and the hospice benefit. In an effort to establish benefit boundaries to avoid uncontrolled utilization, the Medicare program created unintended consequences. To qualify for hospice benefits, Medicare patients must relinquish their eligibility for curative treatments. The arbitrary line of demarcation reinforces the image of giving up in the minds of patients or their families.
There is no objective and consistently defined “right” amount of care at the end of life. Perhaps the better measure of a quality death is matching a care plan to the patient’s informed preference, within the boundaries of the doctor-patient partnership and reasonable expectations of incremental benefit. An 89-year-old who wants to see their great-grandchild born may choose care that for another patient would be disproportionate. A guiding principle can be found in an 1889 observation by Nietzsche: “Those who have a ‘why’ to live for can bear with almost any ‘how’.” The key to assessing the correct balance is a well-informed patient.
A root cause of the end-of-life dilemma is the lack of a connection between terminally ill patients, their families, and medical professionals around facts and expectations. Difficult conversations, if they happen at all, often occur too late. The first step in learning what a patient really wants is to pivot away from the question “What’s the matter with dad?” and to ask instead “What matters to dad?”
The best chance to fundamentally change end-of-life care rests on local initiatives, involving partnerships between health care providers, patients and their families, social networks, clergy, and community resources. Policymakers can take steps to get out of the way, such as by relaxing Medicare or Medicaid benefit designs with respect to hospice and palliative care, but the solution must be a grassroots effort, not top-down.
Martin Luther got one thing wrong; dying is not something we must do alone. Medical providers must take every step possible to arm dying patients and their families with the facts, to ensure that they have all of the information needed to make the best decision…to help them toward “right,” but in the end to allow them to be “wrong.” Because when all is said and done, only the patient knows if we got it right.
