In August 2009 in a speech to religious leaders, President Obama called health care reform “a core ethical and moral obligation.” What ethical concepts are fundamental in the debate that make health care reform centrally an ethical issue, if not an obligation? What is really at stake? The values of justice and liberty are arguably two ethical concepts most central to the reform debate and engender much passion in public discussion.
That public discussion has been hampered by the “chaos despite good intent” that characterized the recent history of efforts at health care reform leading up to March 2010. The Clinton administration’s attempt in 1993/1994 garnered political resistance and defeat—perhaps due in part to the perceived lack of any true negotiation process in Congress. The current administration has similarly been criticized for lack of attention to a truly collaborative process across the aisles. An effective and fair process for reform efforts is an important component of procedural fairness and consensus building that may still be missing in health reform efforts.
Six months after enactment of the Patient Protection and Affordable Care Act (PPACA), there are still many misconceptions of what the health reform legislation will do and won’t do, and much controversy. The lack of clarity about the legislation’s impact makes it difficult for many Americans to feel fully informed and thus to render a thoughtful opinion about this complex legislation, with provisions that go into effect in different phases between 2010 and 2017. And most begin, not surprisingly, with one’s own positional perspective—how will reform affect me and my family? (If I am uninsured, perhaps I see a hope for coverage. If my child is a young adult, extending coverage to age twenty-six may be welcome. If I am fully insured already, I may be concerned that reform will restrict my current choices.) How do we broaden our lenses?
This question draws us back to the twin ethical concepts of justice and liberty and their place in our understanding of health care policy.
What health care services does a democratic society wish to afford its members—both to prevent illness and protect health as well as to provide care when threatened by illness or injury? And, if there are obligations to treat members of society fairly, what does fairness—or at least a fair opportunity for health—require? A recent Robert Wood Johnson Foundation report indicates that without health care reform, current estimates of uninsured Americans—about 49.4 million in 2010—are projected to increase to 59.7 million in 2015 and 67.6 million in 2020. Addressing the inequities in access to care is one of the primary declared goals of the PPACA in the wake of rejection of a single-payer system. The Congressional Budget Office projects that reform will increase the number of non-elderly covered by insurance by 32 million (and, amazingly, reduce the federal deficit). Already enacted “high-risk pool” state programs (which will become “health care exchanges” in 2014) make it possible for those with pre-existing conditions to receive coverage, if they can afford the premiums. And these state-run health insurance exchanges would provide some choice of plans with, presumably, a basic (minimum) level of health care coverage. A recent article by Eibner et al in the September 1, 2010, issue of the New England Journal of Medicine estimates that the number of workers who will be offered employer-sponsored insurance will increase from 84.6 percent to 94.6 percent of U.S. workers with PPACA reform. While these projections for increased availability of insurance with at least a basic standard of care are promising, affordability of offered coverage continues to be an important question.
A classic value discussion that contrasts public health ethics with clinical ethics (or health care ethics at the patient’s bedside) is how one balances obligations to the individual with responsibilities to the community or society as a whole. U.S. society has traditionally placed great value on individual liberty or autonomy, the ability of the individual to make his or her own choice in health care decisions. Many critics of health care reform raise concerns about the potential loss of choice—of doctor, health care facility, type of coverage, and so forth. And the current lawsuits brought by twenty states against the federal government and challenging the constitutionality of the legislation’s mandate to purchase coverage through the health insurance exchanges, are also centered around one’s “right” to choose. Can we require that individuals purchase health insurance to provide for their own and the general welfare?
There are already many ways in which each of us has accepted certain restraints on our liberty so that society as a whole can function (for example, speed limits while driving, pollution emission controls, school attendance). Indeed the exercise of our personal freedoms may only be truly possible in a strong society that agrees to both the rights and responsibilities of its members. So the ethical challenge here may not be freedom from constraints, but a balancing of the value of personal choice defined through specific commitments such as maintaining the ability to continue with one’s current provider or purchase private insurance outside of those plans offered through the exchanges—with supporting new pathways for accessing health care. Balancing these ethical interests is at the heart of successful reform.
Choice in advanced illness and at the end of life
One particular area of the reform debate where the language of personal choice drew a great deal of attention was the discussion of “death panels.” As an ethicist who is close to patient care and involved with physicians-in-training, I was disappointed to see the incredibly important area of palliative and end-of-life care reinterpreted as imposing death and infringing on patients’ and families’ liberty. To claim that discussions about the difficult choices that face patients and families as illness advances would take away patient decision making was an insult to patients, families, and clinicians. We all need to be encouraged to have these conversations and express our choices.
Patients clearly have the right to make their own treatment decisions in consultation with their medical teams. And when patients are medically unable to make such choices, families are central to these discussions. Other assumptions are an abuse of all of the efforts that palliative and end-of-life care clinicians have spent their careers doing—supporting individuals in the ways that honor that individual’s values and beliefs as they deal with difficult decisions that sometimes are near the end of the patient’s life. This misappropriation and mislabeling of a powerful part of all of our lives provides a compelling example that language matters deeply as you construct public policy conversations.
Our current health care system is failing many Americans, and change seems essential. But the promise of health care reform is not yet reality. Implementation—and perhaps evolution—of the PPACA will raise new questions and leave others unanswered. Who will still lack coverage as we move to mandated insurance for most by 2014, and what are our obligations to those not covered? How do we answer the question of services for illegal immigrants? As the legislation is phased in, there is an opportunity for each of us to enter the conversation with constructive concern and to explicitly examine the underlying values.