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December 01, 2014

The Policy and Political Challenges of Being Mortal

Charles P. Sabatino

(Note: The pdf for the issue in which this article appears is not yet available for download.)


At the ABA Midyear Meeting in February 2015, the Commission on Law and Aging and the Health Law Section will cosponsor a resolution “to support legislation and regulation that promotes access to comprehensive long-term supportive services and care for persons with advanced illness.” In this article, Commission Director Charles P. Sabatino describes the resolution and the reasons therefor.

Two recent publications suggest that as a society we may be getting closer to recognizing and doing something about how we treat our sickest and most vulnerable citizens and their families as they cope with illness near the end of life. The first is the release of a landmark report from the Institute of Medicine, Dying in America: Improving Quality and Honoring Individual Preference Near the End of Life. The other is the publication of a powerful book by physician surgeon Atul Gawande, Being Mortal: Medicine and What Matters in the End.

The report by the Institute of Medicine (IOM) starts with a recognition that for patients and their loved ones, no care decisions are more profound than those made near the end of life. But our healthcare and payment system, despite the efforts of dedicated health professionals, largely fails to provide care for those nearing the end-of-life that is compassionate, coordinated, affordable, and of the best quality possible.

Consider this story, one of many submitted to the IOM:

As my 88-year-old father-in-law was in decline with eight different chronic conditions, he had more specialists than we could keep track of, and nobody was steering the ship. Most of all, his pain was poorly managed, but finding an outpatient palliative care physician was impossible, even in a city like Los Angeles. He resisted hospice mainly because he thought that meant he was giving up, so he continued to suffer and experience recurring runs to the emergency room. When he finally agreed to home hospice, his care and condition improved dramatically, and during the final month he lived under hospice he was comfortable, he had heartfelt conversations with all 11 of his children, and he died in peace and dignity in his home. It was a good death, but the period of serious, progressive illness before hospice was a nightmare, because hospice-type care is kept out of reach until the last moments of life.

Atul Gawande’s book, Being Mortal, grippingly portrays Dr. Gawande’s personal evolution as a surgeon and pillar of Western medicine into a humble awareness of what really matters to individuals nearing the end of life and how our health systems tragically miss the mark:

You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions—nursing homes and intensive care units—where regimented, anonymous routines cut us off from all the things that matter to us in life. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.

The IOM report presents a substantial body of evidence showing how broad improvements to the care of those with advanced illness are within reach. They make the case persuasively that improving the quality and availability of medical and social services for patients and their families could not only enhance quality of life through the end of life, but may also contribute to a more sustainable care system. Dr. Gawande makes the same case through his personal experience with patients, family, and innovative leaders in palliative care and gerontology.

From the perspective of the ABA Commission, these issues are not just matters of improving the quality of care. They are ultimately human rights issues, since we see access to dignified, person-centered, coordinated care consistent with the values and preferences of individuals as a fundamental right.

The Commission on Law and Aging and the Health Law Section have taken a first step to respond to the status quo by proposing a resolution that will go to the ABA’s House of Delegates in February 2015. The resolution supports legislation and regulation that promotes access to and financing of high-quality, comprehensive long-term supportive services for persons with advanced illness. It supports a system with six characteristics, based upon elements identified in existing innovative models of advanced care that have been shown to work. The key elements are reflected in the principles and policy framework articulated both by the IOM as well as the Coalition to Transform Advanced Care (C-TAC), a diverse alliance of more than 100 patient and consumer advocacy groups, healthcare professionals and providers, private sector stakeholders, and faith-based organizations.

The resolution identifies six key elements needed to create a high quality system of care for persons with advanced illness. Advanced illness is defined as the stage at which one or more conditions become serious enough that general health and functioning decline, treatment aimed at cure begins to lose its effect, and quality of life increasingly becomes the focus of care. A person with advanced illness has entered the “gray zone” between treatable and terminal illness and may need both chronic care and acute care, as well as palliative care and eventually end-of-life care.

A High-Quality System of Care for Persons with Advanced Illness

Element 1: Finance and payment mechanisms that support access to person-centered care coordination and care management across all care settings, providers, medical conditions, and time.

Care options are currently determined more by various payment incentives and resources available than by the personal goals of individuals, families, and caregivers. The current fee-for-service payment method does not encourage efficient use of services or proper care coordination and encouraged reimbursement for quantity over quality. Fee-for-service also tends to isolate episodes of care over time and location, leading providers to treat recurring medical events in isolation of one another. There is little incentive to integrate treatment over the course of time and place in order to treat the whole person, rather than discrete problems.

Care coordination and care management that reaches across care settings and treatments and provides continuity over time has been shown to be an essential component of quality chronic care. It can be provided through multiple modalities, but its success depends on its engagement with the patient and its ability to break down the system and payment silos that separate treatment settings and home and community-based services.
In its landmark 2001 report, Crossing the Quality Chasm, the IOM defines person centered as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.” The concept has become a pivotal precept in health systems reform and has also been incorporated in Medicaid regulations for home and community based services.

Element 2: Advance care planning through counseling, disclosure and meaningful discussion of prognosis, goals of care, personal values, and treatment preferences, including planning for family caregivers’ needs.

Effective advance care planning depends on an ongoing, informed, shared decision-making process among the patient, family, and providers. At its best it takes place within a community-wide health system that organizes itself to engage patients and those closest to them about their values and their healthcare goals. The ultimate goal is to make sure that patients receive just the treatment they want based on informed decisions and documentation of their preferences.

Planning models based on this framework have been shown to effectively elicit and document patient goals of care and preferences and comply with them in the final stages of the patient’s life. The IOM describes the ideal model as a “Life-Cycle Model of Advance Care Planning” beginning in adulthood as part of primary care and continuing as an evolving discussion through changing health and life circumstances, diagnoses of chronic conditions, declining health, and one’s final stage of life. The discussion changes according to the stage.

Element 3: Access to palliative care, community-based supportive services, and caregiver support to enable persons with advanced illness to remain in the home and community in accord with their preferences and needs.

The Department of Health and Human Services’ Centers for Medicare and Medicaid Services (DHHS CMS) and the National Quality Forum (NQF) both provide a definition to characterize palliative care in the United States:

Palliative care means patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice.

The following features characterize palliative care philosophy and delivery:

  • Care is provided and services are coordinated by an interdisciplinary team.
  • Patients, families, palliative and non-palliative healthcare providers collaborate and communicate about care needs.
  • Services are available concurrently with or independent of curative or life-prolonging care.

Patient and family hopes for peace and dignity are supported throughout the course of illness, during the dying process, and after death.
Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

Most people with advanced illness want to remain at home and, when the time comes, to die at home. So, access to palliative care in the community is important, along with community-based support services to help individuals and their caregivers. Palliative care has also been shown to increase patient and family satisfaction with care, lower costs, and, in some cases, increase longevity for dying patients.

Element 4: Expanded research to improve care delivery and payment practices that will benefit individuals and families facing advanced illness.

So-called pay-for-quality initiatives have become an increasingly important policy strategy for improving quality performance and reducing health care costs. While some measures of quality exist for homebound elders and individuals in hospice programs, a great gap still exists in developing measures that capture the experience of the advanced illness population across care settings, across providers, and over time.

There has been progress through the National Quality Forum which in 2012 released its report endorsing 14 measures for accountability and quality improvement in palliative and end of life care, but these still fall short. NQF has a current project to review potential measures of person- and family-centered care, including health-related quality of life, functional status, and experience with care. It is also working to identify appropriate measures for care coordination, a challenge that requires taking into account multiple providers and care settings.

Element 5: A strong healthcare workforce educated and equipped with the clinical and social skills to serve people with advanced illness and their families and caregivers.

The existing workforce is simply insufficient to care adequately for the growing number of Americans with advanced illness for several reasons, including:

  • We now face a looming shortage of nurses, primary care physicians, chaplains and other spiritual advisors, direct care workers, and social workers. This places increased burdens on family caregivers, who currently provide the vast majority of long-term care and, increasingly, complex care with inadequate training.
  • Existing Medicare and Medicaid regulations and payment rules often limit providers from optimizing efficiencies, using emerging technologies fully, and enabling interdisciplinary teams to provide appropriate supportive care to individuals and families living with advanced illness, especially for individuals who are eligible under both Medicare and Medicaid (called dual eligibles).
  • Advanced illness training and protocols are lacking. There is little incentive to communicate or to coordinate services among health care providers, especially across care settings. Care professionals need training in the provision of certain caregiving and basic supportive services that can be helpful with individuals with advanced illness. Training needs include person-centered decision-making skills, care planning and transitions, palliative care knowledge and skills, and medication management.

Element 6: Health information technology that promotes advanced care planning and effective information sharing across time, place, and provider.

Health information technologies hold great promise for quality and efficiency. But there are also great challenges to its meaningful use and interoperability across care systems and locations. Paper records are too tied to their physical location and vulnerable to loss and disorganized accumulation over time. Technology efforts will also have to develop standards, protocols, and incentives to ensure quality and efficacy across settings and providers.

Consistent with this position is the IOM recommendation urging policy and payment systems to:

require the use of interoperable electronic health records that incorporate advance care planning to improve communication of individuals’ wishes across time, settings, and providers, documenting (1) the designation of a surrogate/decision maker, (2) patient values and beliefs and goals for care, (3) the presence of an advance directive, and (4) the presence of medical orders for life-sustaining treatment for appropriate populations.

Challenges in Realizing the Vision

The task of creating a system with the above characteristics requires broad-based advocacy from many sectors. The ABA brings a unique human rights voice to the debate; it can speak for the interests of patients and families without the inherent conflicts of interests born by providers of care. So far, Congress has failed to address the issue comprehensively or even incrementally. Instead, it has in the past fallen into baseless debates about death panels.

Policy makers have to face up to the fact that dying is not what it used to be. Most Americans will die in old age after an extended period of decline caused by multiple chronic conditions. Within our current health non-system, there are numerous regulatory barriers—as well as clinical, social, and financial barriers—that reinforce fragmented, uncoordinated, and unsupportive care. Without solutions, the last stage of life will be characterized by financial stress, life-extending interventions that may degrade the quality of life with little benefit, and care in settings individuals hoped to avoid.

Adoption of the resolution affords an opportunity for the ABA to recharge its role in raising the consciousness of policy makers about the serious needs of vulnerable populations and reminding them that access to health, long-term, and end-of-life care is a human rights as well as a clinical and social issue. More importantly, in the end, everyone in the ABA is, or will be, profoundly affected by these issues personally if not professionally. ■

Charles P. Sabatino

Charles P. Sabatino is the Director of the American Bar Association Commission on Law and Aging in Washington, DC.