Capital Commentary is the weekly current-affairs publication of CPJ, written to encourage the pursuit of public justice.
End-of-Life Care and Dying Well
Michelle Crotwell Kirtley
In October, California became the fifth state to enact “Right to Die” legislation, which allows doctors to prescribe lethal medication for terminally ill patients. In a signing statement accompanying the bill, Governor Jerry Brown summed up the reason many support physician-assisted suicide: “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn't deny that right to others.” The California law requires two different physicians to certify that the patient has six months or less to live, and the patients must be mentally competent and physically able to swallow the medication. Proponents hailed the measure as relief for suffering patients, while critics have raised concerns about the potential for abuse.
The Supreme Court has firmly rejected the idea that a “right to die” is protected by the Constitution and has left the issue to be decided by the states.i California is one of more than twelve states that have considered bills to legalize physician-assisted suicide this year alone, and the movement continues to gain momentum. In the view of Barbara Coombs Lee, president of a leading right-to-die advocacy group, “The movement has reached a threshold where it is unstoppable.” The push for physician-assisted suicide reflects two deeply held American values: individual autonomy and compassion. These culturally resonant values were given a human face in the widely told story of Brittany Maynard. When diagnosed with terminal brain cancer at the age of twenty-nine, Maynard moved from her home state of California to Oregon, where physician-assisted suicide has been legal for over fifteen years, in order to end her life.
Autonomy and Human Suffering
While a certain degree of autonomy is key to human flourishing, human dignity cannot be reduced simply to the freedom to choose and the absence of suffering. We reflect the image of a triune God who exists eternally as three unique persons in perfect unity. Human autonomy is not absolute. We are responsible to God, and we are, in the best sense, our brothers’ keepers. Our autonomy is derivative, and we were designed to flourish within a network of relationships. Such a view of human flourishing changes how we look at our fellow human beings who are facing the end of their lives. It cannot be true, as proponents of physician-assisted suicide have argued, that a decision to end a suffering life “harms no one else.” Furthermore, compassion alone is not a sufficient ethic. As Georgetown bioethicist Ed Pellegrino observed, compassion is a virtue, not a principle. Historically, great injustice has come from one person’s view of what would be compassionate for another. Forced sterilization laws of the early twentieth century may have been founded upon a sense of compassion for the weak and impoverished, but were unjust at their core. Compassion—which literally means suffering with—acknowledges the depth of agony. But actions based on compassion must be informed by ethical and moral reasoning that channels compassion towards what is good and just.
For Christians, our faith also colors how we view human suffering. Certainly, relieving suffering is a key part of our mission as Christ’s ambassadors in this fallen world. The healing miracles that Jesus performed were not only meant to declare his power over the physical world but also to communicate his intention to redeem the brokenness of that world. Jesus had compassion on the physical suffering of people he encountered, and for generations, Christian doctors and nurses have been motivated to follow in His steps to minister to the sick. His resurrected body and the scriptures affirm that our bodies are good and will be part of what is redeemed and made new. But these realities also allow us to affirm that while pain and death are evil effects of the Fall, they are not the ultimate evil to be avoided at all costs.
Many Christian traditions oppose physician-assisted suicide and are joined in their opposition by a coalition of disability rights groups, whose arguments are not religious in nature. Rather, disability rights groups have rightly sensed that lurking beneath some patients’ desires to end their lives lies a revulsion for disability itself. These groups vehemently oppose the idea that a suffering life is not a life worth living and protest our society’s obsession with youth and vigor. Although the reasons may sound noble, patients considering physician-assisted suicide because of fears of “being a burden on my family” or because of fears related to the loss of function or ability may believe that their dependency on others makes their life less valuable, a view that Scripture clearly refutes. In fact, in a review of the first fifty-six cases of physician-assisted suicide that occurred in Oregon, “the decision to seek physician-assisted suicide was more often associated with concerns about loss of autonomy and control, not fear of pain or suffering.”
If autonomy is not absolute and suffering is not the greatest evil, we must take a broader and more nuanced approach to caring for those facing a painful death. Here we should distinguish the withdrawal of life-sustaining therapies, a right firmly established in US law, from the act of intentionally ending life through the administration of lethal medication, either by the patient in the case of physician-assisted suicide, or by the doctor in the case of euthanasia. Although Christians disagree about when it is permissible to withdraw which kinds of life-sustaining therapies, most acknowledge that such a line can be crossed when a patient is nearing certain death.
Even though motivated by the best of intentions in many cases, publicly sanctioned physician-assisted suicide subverts human flourishing. The potentials for abuse, coercion, and manipulation alone, not only by caregivers but even more subtly or unintentionally by physicians themselves, are sufficient reason to oppose it. An exhausted caregiver could even unconsciously manipulate a patient into seeing themselves as an emotional or financial burden. Family members who stand to gain from death but lose from the extensive costs of end-of-life care may coerce or manipulate a patient into “choosing” suicide. As Pellegrino noted, a physician’s own views of what kind of suffering would make life no longer bearable can influence his recommendations to his patient, and medical professionals themselves are not immune to the kind of emotional burnout in a particularly heart-wrenching cases that would make “getting it over with” attractive. Furthermore, there are very few conditions in which physicians can confidently predict that a patient only has six months or less to live. Most physician-assisted suicide laws are predicated upon the assumption that physicians can confidently distinguish a “legitimate” request for assisted suicide from a request borne out of depression. Yet as one study noted, physicians treating end-of-life conditions only accurately diagnose less than 40 percent of actual cases of depression. For these and other reasons, the United Kingdom—not known for being socially conservative—overwhelmingly rejected a similar proposal around the same time that California approved its assisted suicide bill.
End-of-Life Care and Dying Well
Yet it is not sufficient to merely lobby against physician-assisted suicide, as important as that is. Christians should also look closely at why suicide is an attractive choice for some who are terminally ill, and how we can serve these patients and their caregivers. Technological advances have allowed us to treat previously fatal diseases and sustain life, in some cases seemingly indefinitely. But as life expectancy grows, so do the incidences of debilitating, progressive diseases such as Alzheimer’s and cancer. The pain that accompanies these and other terminal illnesses such as amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) can be excruciating and is often inadequately controlled. The suffering that patients and their caregivers face at the end of such a journey is real and intense, draining financial and emotional resources. Because our mobile, individualistic society has become increasingly disconnected, many patients and their families are going through this ordeal feeling isolated and alone.
Hospice care has evolved to provide multifaceted care for terminally ill patients and their caregivers. As one study explained, “hospice is provided in both home and facility-based settings by an interdisciplinary team of professionals—physicians, nurses, medical social workers, therapists, counselors, and volunteers—who coordinate an individualized plan of care for each patient and family.” When implemented well, hospice can provide support for patients and caregivers and aid everyone involved in learning “the art of dying well,” an idea largely lost in the modern West until the horrific suffering caused by two world wars forced societies to face death on a massive scale. The modern hospice movement was launched by a Christian after World War II, trained first as nurse, then as a social worker, and then as a physician, who believed that caring for the dying was a physical, emotional, and spiritual process. The experience of Dame Cicely Saunders along with her research led to new understandings of the need for palliative care, and she helped found the first hospice in 1967 in London. Her research and philosophy, built upon by nurses, physicians, chaplains, non-profit foundations, and legislators in the United States, led to the enactment of a hospice benefit in Medicare in 1982.
Despite our modern medical establishment’s embrace of the idea of specialized, holistic care for the dying, injustices in the structures of end-of-life care within our healthcare system have prevented many from receiving the physical, emotional, and spiritual support that hospice care can provide. Medicare and Medicaid pay for hospice care for patients with six months or less to live, but in order to qualify, patients have to forego treatment of their disease and must be in the care of a physician who can certify their eligibility. Patients must also be adequately informed and educated about the hospice benefit. Studies have shown that in areas where access to healthcare is more limited, an increased number of eligible patients are unaware of their option to choose hospice care. For patients who are not yet old enough to qualify for Medicare, states must first certify that they meet the disability requirements for Medicaid, adding one more often lengthy, tedious, and complicated bureaucratic layer to the process. In states where physician-assisted suicide is legal, it is often easier to get the lethal prescription from a doctor than to fill out the forms and procedures necessary to get financing for end-of-life care.
Improving Hospice and End-of-Life Care
The transition into hospice care can be facilitated by better advance end-of-life planning. Until quite recently, Medicare did not reimburse physicians for the time spent talking through the various aspects of end-of-life care, including advance directives and hospice care. Preparation of the patients and their community for the decisions that are likely to come will better equip patients to navigate the hospice benefit if it becomes necessary.
Physicians and other health care professionals also need more robust training in end-of-life care and pain management. Regulations controlling access to Schedule II narcotics can make pain management more complicated for terminally ill patients. Studies have shown that these regulations have led physicians to either under-prescribe pain medication or prescribe inappropriate (and less effective) pain medications, either because of the regulations themselves or fears of addiction or hastening death. Further exacerbating the problem is a shortage of trained palliative care and hospice professionals and a lack of coordination between hospice care, acute care hospitals, and long-term care facilities. Because palliative care became its own specialty several years ago, some medical professionals are now uniquely trained in the science of making patients more comfortable in the face of sickness and disease. Nonetheless, workforce shortages and a shortage of hospice beds remain a significant problem.
Inequities in access to hospice care also prevent many patients from being adequately cared for as death approaches. A recent study demonstrated that over 75 percent of the 700,000 hospice beneficiaries in the United States between 1999 and 2000 were non-Hispanic white patients. Low-income patients also underutilized hospice care. As the same study observed, “Lack of diversity in hospice teams and sensitivity to the cultural values of diverse communities has historically been a barrier to hospice care. Hospice providers who come from different cultural and ethnic backgrounds to the patients that they serve may be less likely to recognize the religious traditions of their patients or inadvertently to impede care from the patients’ religious community.”
Compounding these economic and structural barriers to end-of-life care are the fractured communities and broken families that leave many without strong social networks and emotional and spiritual supports. As the hospice movement recognizes, people who are in pain and facing imminent death need more than quality medical care. Physicians are trained to care for and treat the body. In our increasingly secular culture, physicians have become the intermediaries between life and death. Yet death is not merely a physical phenomenon. Social workers, counselors, psychologists, and faith communities must come alongside doctors and nurses to meet the emotional, spiritual, and psychological needs of a terminally ill patient in a holistic way. Hospice care is designed to and should fully utilize all of these professionals and volunteers with expertise in various spheres. But in order to deliver effective care, diverse institutions—government, healthcare institutions, churches, social workers—must seamlessly cooperate. Here again we see the need for faith-based organizations to maintain their freedom to partner with government while giving full expression to their faith so that vulnerable patients have access to quality, holistic, culturally contextualized care.
For their part, churches should not merely delegate their responsibilities to hospital chaplains or pastors. Rather, we must seize the opportunity to be salt and light to a culture that fears death and is repulsed by disability by equipping congregations to minister to the dying in their communities. This can take a variety of forms, from hospice choirs to faithful parishioners sitting with dying patients or providing relief for exhausted caregivers. In this way, with our hands and feet we can demonstrate that the old and the infirm are worth our time and energy. Christians can also help community-based institutions, many of which are faith-based, become more equipped to help the clients they serve. From helping patients and their families fill out forms to directing patients to appropriate forms of counseling, community organizations that are trusted by local residents are in an ideal position to serve the most vulnerable who are often not availing themselves of the help that hospice can provide.
As one comprehensive review of the state of end-of-life care in our country noted, “too many Americans die unnecessarily bad deaths—deaths with inadequate palliative support, inadequate compassion, and inadequate human presence and witness. Deaths preceded by a dying marked by fear, anxiety, loneliness, and isolation.” Yet the Census Bureau predicts that by 2030, 20 percent of our population will be over the age of 65. It is not enough for Christians to protect life at its final stages by opposing physician- assisted suicide. We must also advocate for reforms that will better honor the dignity of terminally ill patients and better enable all patients to access this care. Yet this, too, is not enough. We must call institutions to fulfill their God-given responsibility to care for the dying and be part of repairing the broken social fabric that has left many patients and their families isolated at such a vulnerable stage of life.
Questions for Reflection:
- What is your own attitude towards the disabled or dying? To what degree have we bought into our broader culture's worship of youth and vigor?
- Are there places in your community where you can serve the dying or those caring for sick and dying family members?
- Is physician-assisted suicide legal in your state? If not, have such laws been proposed? What are the ways in which you can civilly advocate against such measures?
-- Michelle Crotwell Kirtley is the Bioethics & Public Policy Associate at the Center for Bioethics & Human Dignity and a former health and science policy advisor on Capitol Hill. She is also a Trustee of the Center for Public Justice and a 2003 alumnae of the Center’s Civitas program in faith and public affairs.
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Capital Commentary is a weekly current-affairs publication of the Center for Public Justice. Published since 1996, it is written to encourage the pursuit of justice. Commentaries do not necessarily represent an official position of the Center for Public Justice but are intended to help advance discussion. Articles, with attribution, may be republished according to our publishing guidelines.”