Not since the Terri Schiavo case has there been such an eruption of public debate over end-of-life issues. Section 1233 of the health care reform bill HR 3200 would create a new Medicare benefit to pay physicians for time spent on end-of-life planning with seniors. Such planning, which would be voluntary, would allow patients to discuss a broad range of issues, including hospice, living wills, advance directives and appropriate pain care.
Though relatively obscure, the section created a huge media stir. Several prominent public officials, most notably Sarah Palin, decried the provision as government rationing of care. Ms. Palin wrote that the legislation would lead to government “death panels,” determining who would live and who would die.
On such divisive issues that impact patient welfare, patient autonomy and social justice, physicians have a duty to take a leadership role. This column has discussed a revised Hippocratic Oath, and the sixth paragraph of it contains this section:
Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
Clearly, the oath provides a pretty good shield against any physician having to serve on a death panel, and would lead us to vehemently oppose any legislation that remotely endorsed such a concept. Yet, most of us in practice often do not fully meet the challenge of demonstrating great care and compassion in matters of life and death.
Fundamental to meeting this challenge is the ability to inform patients of their options in an understandable manner and to treat them in the context of their value system, a process known as shared decision making. To develop a meaningful shared decision regarding end-of-life issues, trust and time are paramount. The best setting is that of an ongoing doctor-patient relationship in which many other shared decisions have already occurred. But our current health care system sorely lacks time and tools for the process of shared decision making. In a primary care office, low reimbursement and the volume of patients make “script, test or turf” about the only viable business model.
Meanwhile, fewer than one-third of Americans have advance directives. Fewer than half of patients with terminal illnesses have them. We have all witnessed too often an aggressive pattern of care in a terminal or near-terminal case where all possible tests and interventions were employed, by default, in an attempt to prolong a patient's life.
Surveys indicate that this type of care is not what the majority of Americans desire. Patients want to die with a sense of control and dignity, with an emphasis on pain and symptom control and being in familiar surroundings. They are concerned about the burden of their dying process on their family, both emotionally and financially.
The majority want to die at home, yet according to a 2009 study in Archives of Internal Medicine by Zhang et al., 38% of those surveyed spent more than 10 days at the end of life in the ICU in a coma or on a ventilator. One-third of families lost most or all of their savings due to the patient's last illness, and one-half of patients had moderate to severe pain more than half the time in the last three days of life. Ironically, it is the status quo, in which patients lack advance directives, and not the new end-of-life Medicare benefit proposed in HR 3200 that results in patients' wishes being denied at the end of their lives.
End-of-life care is also a clear driver of our unsustainable rising health care costs. The 5% of Medicare patients who die annually account for roughly 30% of all Medicare expenditures. Further, one-third of those last-year-of-life expenses are spent in the last month of life and 78% of those costs are related to aggressive life-sustaining treatments.
Another recent study in Archives of Internal Medicine by Black et al. found that those terminally ill patients who spoke with their doctors about end-of-life care incurred $1,876 of medical costs in the last week of life, compared with $2,917 of medical costs in the last week of life for those who reported no such discussions. The higher cost was almost all attributable to aggressive care and resulted in no survival advantage and a worse quality of death. End-of-life discussions do not just save money, but also have a substantial positive impact on the quality of the dying process.
Our role as caregivers does not end with the advance directive. Patients fear physician abandonment in the dying process. After referring a patient to hospice, feeling good about adequately addressing the quality issue of dying, we often never see the patient or family again. Black et al. concluded that non-abandonment of the dying patient consisted of providing continuity, of both expertise and the patient-physician relationship, and facilitating closure of an important therapeutic relationship.
End-of-life discussions, continuity of care in the dying process, and facilitating closure of the doctor-patient relationship are all qualities of care that patients highly value and are a source of significant savings to society, but our current health care delivery system relegates them to the dank cellar closet. This must change, and physicians must lead the charge. New health care delivery models like the patient-centered medical home will let internists give patients the care, compassion and comfort they need and deserve throughout their lives, including as they face death.