End-of-Life Care: Expanding Patient Choice of Ethical Options

Report Health Care Reform

End-of-Life Care: Expanding Patient Choice of Ethical Options

January 31, 2019 43 min read Download Report
Moffit
Senior Fellow
Moffit specializes in health care and entitlement programs, especially Medicare.

Summary

End-of-life care affects all Americans. There is a large gap between what most Americans want and the circumstances that most Americans will face at the end of their lives. A key policy task is to help close that gap. Too often, partisans frame the national debate as if the only choice were between patients receiving drastic interventions or physician-assisted suicide. There is, however, a wide area between these two extreme options; policymakers should seek to support patients and families who want better options based on informed patient consent. Seriously ill patients, with assistance of their families, physicians and trusted advisors, should be the ones to decide when continued medical interventions are useful or futile, proportionate or disproportionate. The role of public officials is to ensure that patients, with their families, physicians and trusted advisors, are equipped to make difficult decisions well before they face a personal and family crisis.

Key Takeaways

There is a large gap between what most Americans want and the circumstances that most Americans will face at the end of their lives.

Too often, partisans frame the policy debate as if patients’ only end-of-life choices are drastic interventions or physician-assisted suicide.

Policymakers should ensure better options so patients, with physicians, families and advisors, are equipped to make hard decisions well before a medical crisis.

End-of-life care issues are complex and difficult, and in the realm of public policy—where a zero-sum game over ethical alternatives is the norm—these issues can further divide an already polarized nation. Too often, partisans frame the national debate as if the only choice were between patients receiving drastic interventions (such as being hooked up to a machine that artificially extends life indefinitely) or allowing physicians to assist in the suicides of their patients. There is, however, a wide area between these two extreme options. Policymakers need to exercise prudence and pursue sound public policy to create the conditions that allow individuals and families to pursue rational alternatives.

In the 21st century, death routinely follows advanced age and physical decline. The patterns of mortality have been changing; far more Americans are living longer and dying at the end of a relatively slow process of physical decline. Because the fastest-growing cohort of the American population is aged 85 and older, end-of-life issues are of increasing concern. By 2030, according to the U.S. Census Bureau, over 20 percent of Americans will be aged 65 and over, compared to just 13 percent in 2010 and only 9.8 percent in 1970.REF In addition, for Americans who have reached age 65, life expectancy has been rising.REF

There is a large gap between what most Americans want and the circumstances that most Americans will face at the end of their lives. A key policy task is to help close that gap. Most Americans want to die at home,REF surrounded by loved ones, but under current arrangements, these wishes often remain unfulfilled: Over one-third of all deaths take place in hospitals, including hospital intensive care units.REF Most older Americans who suffer from a debilitating illness surely want the best care that can be available to them. Most also want their care to be governed by strong ethical or moral standards.

According to a major report published by the Institute of Medicine, “A substantial body of evidence shows that improved care for people near the end of life is a goal within the nation’s reach. Improving the quality of care for people with advanced serious illness and focusing on their preferences may help stabilize both total health care and social costs over time.”REF

Sound Policy. America’s public officials should ensure that end-of-life decisions are left to the informed judgment of patients, with the assistance of trusted members of their families, or persons specifically designated to act on their behalf, with the advice and counsel of their physicians and, if they so desire, members of the clergy. Patients should be ultimately responsible for their decisions about when continued medical interventions would be useful or futile, proportionate or disproportionate, in view of their condition. Because end-of-life care issues necessarily involve deeply personal ethical, moral, and religious convictions, public officials must respect those convictions while affirming the inherent value and dignity of human life.

To facilitate this goal, policymakers should advance the following recommendations:

  • Educate the public on the advantages of advance planning for end-of-life care. Policymakers have a role—albeit a limited one—in encouraging such conversations and the adoption and use of end-of-life care planning documents. While policymakers should not be permitted to specify the content of end-of-life care planning documents, they should nonetheless encourage patients to adopt them in accordance with their personal ethical, moral, and religious convictions. Policymakers should remove barriers to a broader public acceptance of such planning, particularly among Medicare beneficiaries. Greater patient engagement and public awareness of the advantages of such planning can help to reduce confusion and the often bitter and costly conflict over ethical alternatives that confronts patients and their families at the end of life.
  • Test new payment models for palliative care and hospice care in Medicare. Policymakers should remove barriers to broader access to palliative and hospice care, both in traditional Medicare and in Medicare Advantage. The current fee-for-service Medicare payment system results in fragmented and disjointed palliative care for many of the most costly of the program’s beneficiaries. Moreover, with the growing popularity of the more flexible Medicare Advantage plans, the Administration should pursue appropriate demonstrations to allow for integration of hospice care in the Medicare Advantage program.
  • Expand Americans’ personal choice. In both the public and private sectors, patients may discover that with respect to the most sensitive questions concerning end-of-life care, their insurance carriers or care providers may be indifferent or even hostile to their ethical, moral, or religious beliefs. The best way to resolve this serious problem would be to create a robust consumer choice system that enables individuals to choose the health plans, benefit packages, and medical treatments and procedures that work best for them. Individuals should be able to choose health plans that offer care delivery, especially at the end of life, that reflects their religious values and moral convictions. Such a change would allow individuals and families to channel their health care dollars to the plans, medical professionals, and medical institutions that respect or share their moral and religious values concerning care at the end of life.
  • Oppose physician-assisted suicide. America’s population is rapidly aging, and our citizens face the rising personal and public costs of caring for a fast-growing cohort of senior citizens. Meanwhile, the personal and family discussions of the appropriate medical procedures for loved ones at the end of life are taking place amid an intensifying public debate over physician-assisted suicide. While federal law prohibits the use of federal funds for physician-assisted suicide, six states and the District of Columbia have legalized the practice, and other state legislatures are currently considering measures to legalize it. Such legislation not only repudiates traditional medical ethics and undermines the doctor–patient relationship, but also is likely to endanger the poor, the uneducated, the disabled, and the vulnerable.

Death and America’s Demographic Evolution

Life expectancy has increased dramatically. In 1900, the average American life span was 47.3 years; in 2007, it reached 77.9 years;REF and by 2016, it had risen to 78.8 years.REF The pattern of death has also changed dramatically. The President’s Council on Bioethics has neatly summarized the data: “In 1900, the usual place of death was at home; in 2000, it was the hospital. In 1900, most people died from accident or infections without suffering a long period of disability. In 2000, people suffered, on average, two years of severe disability on the way to death.”REF

Today, two factors shape American death and demographic trends. The first is that, overwhelmingly, the leading cause of death in persons over the age of 65 is chronic illness, most notably heart disease, cancer, and chronic respiratory disease.REF The second, as noted, is that persons over the age of 65 are also living longer. Between 1950 and 2016, mortality rates for persons between the ages of 65 and 74 declined by 56 percent.REF Medical advances, particularly advances in medical technology, have greatly contributed to this welcome expansion in longevity.REF However, the rising costs, particularly Medicare entitlement costs, have been formidable. In 1953, for example, per capita medical spending on the elderly was 70 percent higher than spending on the nonelderly; by 1970, the fourth year of Medicare’s implementation, it had jumped to 250 percent higher.REF The data show that the onset of death is largely a prolonged process of physical decline among the elderly, that medical interventions have contributed significantly to increased longevity among persons over the age of 65, and that ever larger numbers of persons are living longer in retirement.

Along with many other industrial countries with aging populations, America is confronting the daunting challenge of Alzheimer’s disease, a progressive, slow, costly, and fatal dementia for which there is no cure. According to the Partnership to Fight Chronic Disease, over the period 2017–2030, the “cumulative total cost” of Alzheimer’s will be $7.7 trillion, and among the payers, Medicare and Medicaid (the taxpayers) will absorb an estimated 70 percent of third-party payment costs.REF

Medicare, which pays for seniors’ and certain disabled citizens’ care, is “the largest insurer of medical care provided at the end of life.”REF Approximately eight out of 10 American decedents are Medicare recipients. Not surprisingly, end-of-life care regularly consumes about one out of every four dollars in total Medicare spending.REF Inpatient hospital care and physician reimbursement accounts for the largest proportion of Medicare spending, but the program also finances hospice care, specialized care for the dying, and skilled nursing and home health care.REF The most expensive Medicare beneficiaries are the so-called dual-eligible, elderly patients covered by both Medicare and Medicaid.REF In 2014, for example, traditional Medicare’s average per capita spending was $33,676 for enrollees in the last year of life but $36,037 for those who were dually eligible in Medicare and Medicaid.REF

Three powerful, rising, and converging trends—a rapidly aging population, the emergence of unprecedented federal entitlement costs, and the deterioration of traditional medical ethics—are the ingredients of a polarizing political storm. As New Atlantis Editor Eric Cohen has warned, “In an aging society, in which the elderly come to seem and come to feel like a paralyzing burden, the seduction of euthanasia may be too strong to resist.”REF

Of these three trends, the most dangerous for the elderly and disabled is the weakening of traditional medical ethics including a new openness to the medical killing of persons who suffer from disability or dementia. Consider the international experience. In Quebec, Canada, where euthanasia, often called “mercy killing,” is legal, a survey of caregivers found that 72 percent favored euthanizing Alzheimer’s patients, even if those patients did not previously request or consent to it.REF Such actions would directly repudiate the traditional medical ethics embodied in the Hippocratic Oath, the venerable standard of medical ethics that specifically forbids physicians from practicing euthanasia.

Patients and their families must be vigilant because the traditional Hippocratic Oath is often ignored, watered down, or rejected.REF As Dr. Gene Dorio, a palliative care physician, reports, “As a physician who screened patients for hospice eligibility, I periodically saw doctors abandon the Hippocratic Oath and misrepresent medical information.”REF Some practitioners believe that this decline in traditional medical ethics reflects the modern structure and organization of medical care delivery. Writing in the British Medical Journal, surgeon Imre Loefer observes that:

The Hippocratic ethics take no account of the impact of modern medicine. This is why the Hippocratic oath, particularly in respect to its three most essential principles—the sanctity of life, the privacy of patients, and the “do no harm” command—is increasingly subverted, ignored, altered, reinterpreted. The Hippocratic ethics do not tally any more with the reality of modern society. Whether this is regrettable or not, doctors and society must get to grips with the ethical consequences of the medical revolution.REF

Of course, no human behavior is inevitable. Americans can recover the humane tradition of medical ethics, including the Hippocratic principle that the physician is the servant of the patient and, as a servant, obligated to safeguard the privacy of the patient and protect the patient from medical harm. Public education and robust debate can change public attitudes and reverse prevailing cultural and intellectual trends. Public policy can promote ethical alternative courses of action.

Appropriate Medical Treatment. Life-saving technologies have contributed to the steady increase in American life expectancy, but they also have complicated Americans’ discussions about their own care at the end of life. As Dr. Jerry Menikoff, Director of the Office for Human Research Protections at the U.S Department of Health and Human Services (HHS), has observed, “People often say that life used to be simpler. Whether or not that is the case, it certainly is true that death used to be simpler.”REF

Today, major advances in medical technology enable medical professionals to treat and recover seriously ill patients who once were given up as lost. Boston University School of Public Health Professor George Annas warns that the routine resort to technology is overwhelming both common sense and patients’ wishes: “Death is feared and even dreaded in our culture, and few Americans are able to die at home, at peace, with our loved ones in attendance, without seeking the ‘latest new treatment.’”REF

Advances in medical technology and pharmaceutical innovation have helped and will continue to help countless patients, but technological bias saturates our culture: Because we can do something, we too often assume we should do something. In fact, one may not necessarily choose to resort to advanced medical technology in certain cases. There is a broadly recognized distinction between the use of proportionate, ordinary medical interventions and disproportionate, extraordinary medical interventions. Failure to distinguish between the two at the right time entails huge costs, both human and financial. According to Dr. Jessica Zitter, a physician providing intensive care services:

As an ICU physician, I’ve used technologies like breathing machines and feeding tubes to save lives that would have been lost just a few decades earlier. But I’ve also seen the substantial costs, both human and financial, of some medical advances. Many patients die protracted deaths while being kept alive by machines—which, research shows, they would not have chosen had there been adequate communication about their options beforehand.REF

When a patient has entered the final phase of illness, there is often severe disagreement among family members, as there is in the general population,REF about the right and proper course of action. Ideally, patients and families should have candid discussions well before action must be taken and should be equipped to distinguish between futile measures that prolong life artificially and rash actions that would result in a premature death.

While proportionate, ordinary medical care is proper, a resort to disproportionate, extraordinary medical care may not be. Likewise, terminally ill patients ought not to be pressured into being subject to “heroic” measures, especially if those measures incur severe discomfort; nor should doctors, lawyers, or government officials pressure patients into collaborating in their own suicides. Instead, to the extent possible, policymakers should facilitate a legal and regulatory environment that encourages these sensitive and informed conversations among patients and their families, their doctors, and—depending on the patient’s wishes—members of the clergy or other trusted persons.

Key Policies Relating to End-of-Life Care

“More than a quarter of all adults, including those aged 75 and older, have given little or no thought to their end-of-life wishes, and even fewer have captured these wishes in writing or through conversation,” according to the Institute of Medicine. “This is the case despite the results of recent polls showing that Americans worry about the potential of high costs of care near the end of life and desire not to be a burden—financial or otherwise—on family members.”REF

Advance Directives. Advance planning can take several forms. Before they become patients, persons can authorize a planning document, such as an advance directive, often in standardized legal forms that specify the person’s instructions concerning medical care. Advance directives enable persons to specify, for example, that they do not wish to be subject to “heroic” medical interventions (“extraordinary medical care”) that keep them alive artificially in the face of a terminal illness. They can authorize a medical “power of attorney” and instruct another person, usually a family member or friend, to act on their behalf to make medical treatment decisions or issue specific instructions that are compatible with their ethical, moral, and religious convictions. These instructions can cover a wide range of items such as the kinds of life-sustaining treatments that they wish to have administered in the event that they are unable to communicate their wishes—a common problem in the final stages of advanced illness.REF

The execution and transmission of these documents is also sensitive. When a patient is seriously ill and rushed to an intensive care unit within a hospital, medical professionals need to make correct and decisive decisions concerning the patient’s care, and these decisions often involve risks to the patient’s life and health. The patient and his or her family are often under great stress, breakdowns in communication can occur, and tensions often arise within the family and sometimes between the family and the medical professionals. These problems can continue or even worsen in the transfer of patients from hospitals to skilled nursing facilities and, in many cases, right back to the hospital.

In a paper-driven world, the patient’s advance directive—assuming the patient even has such a directive—may not be immediately available; it may be misplaced or in the possession of a family member who may be absent. Under pressure to take an extraordinary medical intervention, doctors and other medical professionals may have absolutely no idea what the patient has determined with regard to his own care—assuming the patient has made any such determination at all. In such a situation, Dr. Dorio warns, “[i]f there is no paperwork, hospitals get their legal teams to argue with your family over the direction of your medical care.”REF

Advance directives increasingly are included among patients’ confidential medical records and transmitted electronically. Today, given the growth of electronic health records and the rise of cybercrime, the security of these electronic communications and records is another concern. Between 2014 and 2017, more than 147 million medical records were breached nationwide.REF With advances in information technology, the safe and efficient transmission of patients’ directives, as well as appropriate access to these directives by medical professionals, skilled nursing facilities, and hospitals, is vitally important.

There is, of course, no perfect legal instrument. Patients can and do change their minds, particularly when they find themselves in a potentially terminal condition. Nonetheless, the President’s Council on Bioethics strongly emphasizes the broader advantages of such advance planning, particularly the fruitful conversations between patients and their families:

Such conversation[s] might focus not so much on specific medical treatments a patient would or would not want as on other aspects of aging and dying that might matter even more to the person: for example, being steadily cared for during the long period of illness, having the company of one’s family and friends at the end, making peace with God, having a chance to say goodbye to a particular person, dying in a quiet and dignified setting, sparing one’s family additional anguish, and other considerations not strictly medical.REF

Laws governing legal arrangements conferring powers of attorney or advanced planning directives for patients facing terminal illness, as well as permission for physician-assisted suicide, largely fall under state jurisdiction. State legislators can take steps to help patients plan for care when they are suffering from a dangerous medical condition. Many state laws, for example, require that medical facilities that provide long-term or post-acute care for patients transferred to them must provide these patients with a standardized form—a “medical order for life-sustaining treatment”—that outlines the treatment options available to them.REF Patients must, however, scrutinize these forms before signing them and make sure that they authorize only medical procedures that are in line with their own ethical, moral, or religious convictions when they are facing a potentially terminal condition.

Medicare also has a role in end-of-life discussions by covering the costs of such discussions with a physician.REF By 2015, the Kaiser Health Tracking Poll found that nine out of 10 Americans support the availability of such end-of-life discussions covered by Medicare, although only 17 percent of respondents report having such a discussion.REF By 2016, an estimated 575,000 Medicare beneficiaries reported participating in end-of-life discussions with their physicians, and “[n]early 23,000 providers submitted about $93 million in charges, including more than $43 million covered by the federal program for seniors and the disabled.”REF

Whatever mechanism a person employs, whether it is an advance directive or a power of attorney, policymakers should secure and protect the central “space” for the nongovernmental institutions of civil society—patients and their families, religious organizations, and other trusted social institutions—to play the primary advisory role in assisting persons as they make the key decisions about their care at the end of life. If government officials usurp the primary role of patients and their families in these sensitive decisions, then both can become the downstream victims of transient ideological fashions or the impersonal exercise of bureaucratic power.REF

Palliative and Hospice Care. According to the Institute of Medicine:

Expecting people to understand or have meaningful conversations about end-of-life care issues presumes a common vocabulary; however, surveys show people do not understand what palliative care is or what role it plays near the end of life, do not have a clear concept of “caregiver”, and may be confused by the various titles assigned by state laws to people who serve as health care agents (such as surrogate decision makers or proxies).REF

In light of these issues, physicians may feel reluctant to refer seriously ill patients out of fear of upsetting patients and their families—a problem that is aggravated by the common confusion of palliative care with hospice care.REF

Palliative care provides a wide range of medical and related services such as pain management, including the appropriate use of drugs, and emotional support, including the relief of psychological stress. Palliative care can be used appropriately for anyone with a serious illness, regardless of his or her prognosis. Such care can help such patients manage their pain and symptoms effectively and can be provided to patients who are not necessarily suffering from a terminal condition. If the prognosis for these patients becomes terminal, then they are candidates for hospice care. As Doctor Dorio warns, however, “[g]oing on hospice should be a decision made by the patients or their loved ones, and not coerced by doctors or hospitals who might have an economic self-interest.”REF

A review of various studies in the professional literature shows that the use of palliative care reduces patient pain and discomfort, increases patient and family satisfaction, reduces hospitalization, and reduces hospital readmissions in addition to achieving cost savings.REF A New England Journal of Medicine study compared outcomes of cancer patients enrolled in palliative care with outcomes of cancer patients enrolled in standard cancer treatment. Patients receiving palliative care had fewer instances of depression, lived longer, and reported a higher quality of life than those who pursued more expensive and aggressive cancer treatment.REF

Palliative care also serves as the humane alternative for desperate patients who might otherwise consider opting for physician-assisted suicide.REF It is especially relevant for patients in states that have legalized the practice. According to the World Health Alliance, palliative care “improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”REF

There are barriers to more widespread use of palliative care: a lack of public awareness that such a spectrum of specialized care even exists; an insufficient number of medical professionals trained to serve patients enrolled in palliative care programs;REF and—importantly—a Medicare payment system that is incompatible with an effective system of integrated team-based care.

Hospice care is for terminally ill patients. Under the Medicare program, which delivers the largest share of such care, patients with a medical prognosis of six months or less to live are eligible.REFPatients receive personalized care, counseling, and medications aimed at relieving pain and symptoms and providing comfort during the course of their terminal illness.REF It is comprehensive and specialized care, providing services to control pain and distress, and it provides these patients with emotional as well as physical comfort in their last days.REF

Hospice care has grown rapidly in recent years. Researchers at the Kaiser Family Foundation reported that “[o]f all Medicare beneficiaries who died in 2014, 46 percent used hospice—a rate that has more than doubled since 2000 (21 percent).”REF That year, Medicare hospice payments totaled $15.1 billion, or an average of $11,393 per beneficiary.REF

Under current law, however, hospice is available to Medicare patients only through traditional Medicare.REF Beneficiaries in Medicare Advantage plans may still receive Medicare hospice benefits under the terms and conditions of traditional Medicare while maintaining enrollment in Medicare Advantage.

Coverage Choices. Today, 48 percent of total spending on health care is direct government spending.REF Government also heavily regulates private health care spending. Thus, government officials influence, supervise, and control the current organization, financing, and delivery of American medical care. In the private sector, large and often notoriously noncompetitive third-party payment systems, not patients, make the key benefit, financing, and care delivery decisions.

In both the public and the private sectors, patients may discover that when it comes to questions concerning end-of-life care, their insurance carriers or care providers may be indifferent to their ethical, moral, or religious beliefs. The best way to resolve this serious problem would be to create a robust consumer choice system that enables individuals to choose the plans, benefit packages, and medical treatments and procedures that work best for them. Such a consumer-oriented shift would require substantial changes in federal policy with respect to medical payment and the financing of health insurance.

Sharing ministries—health arrangements based on voluntary cooperation among patients who pay into a common health fund for mutual care—are an alternative to conventional health insurance. The attractiveness of these programs, which are mostly Christian cooperatives, stems precisely from the fact that the doctors and medical professionals in such programs deliver medical services in accordance with the religious principles of the subscribers. Although sharing ministries are a valid option for many patients, Congress and the Administration should go further to ensure that Americans have a personal choice of health insurance plans that can also provide care delivery in accordance with the ethical, moral, and religious convictions of their enrollees.REF

Physician-Assisted Suicide. Patients suffering from serious illness are not limited to the choice of unwanted life-prolonging care or assisted suicide to end their lives. This is a false dilemma. As noted previously, many alternatives are available to seriously ill patients, including the appropriate referral for palliative and hospice care.

The original Hippocratic Oath for physicians states: “I will keep [the sick] from harm and injustice. I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect.” Accordingly, doctors should provide ordinary medical care to alleviate pain and suffering, and thus enable patients to die a dignified natural death, but they should not kill patients or assist them in killing themselves. Medical killing is the ugly reality that such euphemisms as “death with dignity” and “aid in dying” seek to conceal.REF

Federal law prohibits federal funding for “any health care item or service furnished for the purpose of causing, or for the purpose of assisting in causing, the death of any individual such as by assisted suicide, euthanasia, or mercy killing.”REF Six states (California, Colorado, Hawaii, Oregon, Vermont, and Washington) as well as the District of Columbia, however, have enacted laws legalizing physician-assisted suicide. State legislators who resort to the legalization of physician-assisted suicide, as explained in a Heritage Foundation analysis,REF are enacting statutes that would endanger the weak and the vulnerable, corrupt the practice of medicine, undercut the traditional doctor–patient relationship, compromise family relationships, and betray the dignity and equality of human persons.

Of particular concern is the fact that normalization of this practice endangers those who are poor, weak, or socially marginalized. As Marilyn Golden, a senior policy analyst with the Disability Rights Education and Defense Fund, warns:

The legalization of assisted suicide always appears acceptable when the focus is solely on an individual. But it is important to remember that doing so would have repercussions across all of society, and would put many people at risk of immense harm. After all, not every terminal prognosis is correct, and not everyone has a loving husband, family or support system.REF

Similarly, Dr. Ezekiel Emanuel, a professor of health policy at the University of Pennsylvania and adviser to former President Barack Obama, offers the poignant observation that in the final analysis, the legalization of physician-assisted suicide will have a disparate impact:

Whom does legalizing assisted suicide really benefit? Well-off, well-educated people, typically suffering from cancer, who are used to controlling everything in their lives—the top 0.2 percent. And who are the people most likely to be abused if assisted suicide is legalized? The poor, poorly educated, dying patients who pose a burden on their relatives.REF

The example of several European countries—the Netherlands, Belgium, Luxembourg—suggests that safeguards to ensure effective control have proved inadequate. In the Netherlands, “legal and medical guidelines” specify that patients can be euthanized based on a “free and explicit” request by the patient. In fact, an independent examination of the data shows that patients have been euthanized without such requests in thousands of cases, including cases in which doctors “hastened” death by the inappropriate use of pain-killing drugs or medical care was withheld or withdrawn to “hasten” death.REF

The most common justifications for physician-assisted suicide are pain or the fear of pain and extended suffering, the prospect of being kept alive artificially by advanced medical technology, and the belief that the practice will guarantee a large number of patients a “good death.”REF In fact, as Dr. Emanuel explains, these justifications are largely groundless:

Patients themselves say that the primary motive is not to escape physical pain but psychological distress; the main drivers are depression, hopelessness and fear of loss of autonomy and control…. Typically, our response to suicidal feelings associated with depression and hopelessness is not to give people the means to end their lives but to offer them counseling and caring.REF

Victoria Reggie Kennedy, the wife of the late Senator Edward M. Kennedy of Massachusetts, perhaps said it best, writing in opposition to “a so-called ‘Death with Dignity’ initiative” that was on the ballot in Massachusetts in 2012:

My late husband Sen. Edward Kennedy called quality, affordable health care for all the cause of his life. Question 2 turns his vision of health care for all on its head by asking us to endorse patient suicide—not patient care—as our public policy for dealing with pain and the financial burdens of care at the end of life. We’re better than that. We should expand palliative care, pain management, nursing care and hospice, not trade the dignity and life of a human being for the bottom line.REF

Strengthening End-of-Life Care

Much has been done and there is more that can be done to help fulfill patients’ wishes at the end of life. Policymakers should develop policies that support the ability of patients and their families or designated representatives to make good decisions about end-of-life care in consultation with their doctors, other trusted advisers, and members of the clergy.REF Specifically:

  • Educate the public and promote advance planning directives through the private sector, states, and Medicare. First, private associations or religious institutions can undertake public awareness campaigns that highlight the potential benefits of advance planning for end-of-life care. Churches and religious organizations, in particular, can (and some do) provide the appropriate guidance for their congregants in such planning documents, clarifying the ethical and moral issues involved in the provision of end-of-life care. This planning can take the form of appointment of persons with power of attorney in health matters and specific medical instructions in instances of terminal illness, including advance directives. In all cases, whatever the legal instrument a person chooses, the law should guarantee that any such planning instruments are compatible with patients’ ethical, moral, and religious values.

    Second, states should make sure that the transmission of advance directives is effected in accordance with relevant privacy laws. States can promote the safe and efficient transmission of medical records, including patients’ advance directives, as part of their responsibility to write laws and regulations. Maryland, for example, has established an “electronic advance directives” registry that allows 48 acute-care Maryland hospitals to receive and transmit patients’ advance directives while protecting patient privacy.REF

    At the federal level, Medicare should provide enrollees with unbiased information on advance planning in its annual Medicare and You handbook for beneficiaries. In addition, the Center for Medicare and Medicaid Innovation (CMMI) could test the effect of economic incentives, whether premium discounts or reduced cost sharing, for enrollees in traditional Medicare and Medicare Advantage who voluntarily choose to file personal advance directives that are compatible with their ethical, moral, and religious convictions.REF Conceptually, the use of economic incentives for advance planning would be analogous to the practice of some private businesses and health insurers that provide their enrollees with premium discounts if they enroll in wellness programs or participate in prevention programs. Today, for example, 46 percent of large firms already lower premiums or cost sharing for employees who complete a health risk assessment.REF

  • Move forward with innovative payment models for palliative care in Medicare. Traditional Medicare covers about two-thirds of all Medicare beneficiaries. Traditional Medicare currently finances palliative care services at standard government reimbursement rates under its existing fee-for-service system, but care for specific services, funded through Medicare Parts A or B, is unnecessarily fragmented and incompatible with the team approach that such care requires. Thus, palliative care is burdened by Medicare’s rigid and inflexible bureaucratic payment system. To remedy this, HHS should continue to move forward with three promising changes to expand access to palliative care.

    In Medicare Advantage, the Centers for Medicare and Medicaid Services (CMS) is proposing rule changes that would give Medicare Advantage plans greater flexibility in providing supplemental benefits. With regard to seriously ill patients, the proposal would allow these plans to offer “home-based palliative care,” a benefit for persons with a life expectancy beyond six months: “This change will allow MA-contracted nurses and social workers—whose time is not directly billable under traditional Medicare Fee for Service—to go into the home to provide the high quality services that palliative care includes.”REF

    HHS Secretary Alex Azar is also examining two new payment models that would aim to secure better value for palliative care dollars.REF A proposal from the American Academy of Hospice and Palliative Care Medicine would test a Medicare payment arrangement for interdisciplinary palliative care teams that would consist of base payments adjusted for measures of performance. These Medicare palliative care teams, alternatively, could share bonuses and losses in meeting performance goals in taking on the total cost of care for enrolled patients.REF

    The Coalition to Transform Advanced Care proposes the creation of an alternative payment arrangement for the care of patients in their final year of life. Its Advanced Care Model would replace traditional Medicare payment with a payment system that includes quality bonuses for performance by a multidisciplinary team of doctors, nurses, and social workers.REF

  • Test innovative proposals in Medicare Advantage to expand access to hospice care. Traditional fee-for-service Medicare alone has the legal authority to provide hospice services. Yet Medicare Advantage, a system of competing private health plans, covers more than one-third of the Medicare population and is growing rapidly.

    CMMI could test the provision of hospice care within the Medicare Advantage program through a demonstration to allow Medicare Advantage plans to offer hospice benefits with the broad flexibility to meet the holistic needs of dying patients. Such a demonstration would determine whether these private health plans could secure lower costs, better outcomes, and higher satisfaction among hospice-care patients and their families than is achieved through traditional Medicare.

  • Expand personal choice of health plans and providers. In both the public and the private sectors, patients may discover that their insurance carriers or care providers are indifferent to their ethical, moral, or religious beliefs with respect to end-of-life care. Resolution of this serious problem could best be achieved through creation of a consumer choice system that enables individuals to choose the insurance coverage, benefit packages, and medical treatments and procedures that work best for them. Such a consumer-oriented shift would require substantial changes in federal policy on medical payment and the financing of health insurance.

    Washington policymakers should start by inviting religious organizations to sponsor health plans within the two federally organized, consumer-driven health insurance programs, Medicare Advantage and the Federal Employees Health Benefits Program (FEHBP). Such plans would be able to offer services, including end-of-life care, that are consistent with the religious values of their subscribers or policyholders. Likewise, Congress and the Administration should eliminate any regulatory or statutory barriers, particularly the restrictive tax treatment of health insurance, that today frustrate or penalize individuals and families who may wish to purchase new and innovative health plans in the individual health insurance markets.REF

  • Oppose physician-assisted suicide. Thus far, six states (California, Colorado, Hawaii, Oregon, Vermont, and Washington) and the District of Columbia have enacted laws legalizing physician-assisted suicide. Notwithstanding favorable polling, there seems to be a residual moral uneasiness about these laws. The District of Columbia enacted its assisted suicide law in 2017, for example, but not one patient has invoked the law, and only two out of the District’s 11,000 physicians have signed up to assist in suicide.REF Policymakers at the state and federal levels should oppose further efforts to legalize physician-assisted suicide, and state legislators should roll back existing laws that legitimize physician-suicide.

Conclusion

Given the combination of a rapidly aging population and the increasing budgetary pressures of federal health entitlements, end-of-life care issues require the attention of all Americans—patients and their families and friends as well as policymakers. As Eric Cohen has observed:

The real challenge upon which the future of American bioethics will turn is learning how to live and die without trampling on the principle of human equality in the name of medical research, and learning how to step aside for the next generation without treating the debilitated elderly with a fiscally responsible inhumanity.REF

The role of public policy in this area is limited. Policymakers should oppose physician-assisted suicide, an option that is incompatible with the inherent value of human life. They should encourage advance planning for end-of-life care and access to the benefits of palliative care by promoting public awareness and by improving Medicare payment. At a time when there is deepening conflict over moral values in health care, policymakers should break down barriers that prevent Americans from exercising their personal choice from among different types of health plans and teams of medical professionals. Specifically, Americans should be able to choose the kinds of health plans they want, including those that respect their ethical values and religious convictions, as they make these sensitive end-of-life decisions.

Congress and the Administration need to improve the financing and delivery of care in Medicare with a goal of expanding greater patient choice and injecting, to the degree possible, market competition that will improve care delivery and secure better patient outcomes. The Trump Administration should follow through on other Medicare demonstrations that would lay the groundwork for major improvements in the care of the seriously or terminally ill. Most important, the Administration should test and report progress on alternative payment models for palliative care and hospice care in Medicare.

Public officials should recognize that their role is a supportive one. The key decision-makers in this area are individual persons, as patients, in consultation with their families or designated caregivers and with the advice, counsel, and assistance of trusted medical and religious authorities. Public officials’ contribution is to ensure that patients and their families, with the assistance of their doctors and other trusted advisers, have the necessary space and resources to discuss and sort through difficult decisions well before they face a personal and family crisis.

—Robert E. Moffit, PhD, is a Senior Fellow in the Domestic Policy Studies Department, of the Institute for Family, Community, and Opportunity, at The Heritage Foundation. Hannah Howard, a Heritage Foundation intern and graduate fellow in health policy, contributed research to this paper. The author is also grateful to Ryan T. Anderson, PhD, William E. Simon Senior Research Fellow in American Principles and Public Policy in the DeVos Center for Religion and Civil Society, of the Institute for Family, Community, and Opportunity, for helpful advice and comments.

Authors

Moffit
Robert Moffit

Senior Fellow