100

AMERICAN BAR ASSOCIATION

COMMISSION ON LAW AND AGING

HEALTH LAW SECTION

REPORT TO THE HOUSE OF DELEGATES

RESOLUTION

1

100

RESOLVED, That the American Bar Association urges federal, state, local, territorial, and tribal governments to enact legislation and regulation that will promote the following components in the provision of care to persons with advanced illness:

  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;
  1. 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;
  1. 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;
  1. Expanded research to improve care delivery and payment practices that will benefit individuals and families facing advanced illness;
  1. A strong health care workforce educated and equipped with the clinical and social skills to serve people with advanced illness and their families and caregivers; and
  1. Health information technology that promotes advance care planning and effective information sharing across time, place, and provider.

1

100

REPORT

The purpose of this resolution is to support legislation and regulation that promote access to comprehensive long-term supportive services and care for persons with advanced illness. Advanced illness occurs when 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.[1] People with advanced illness typically have multiple chronic conditions and face a progressive decline in health and function that is becoming irreversible. In short, a person with advanced illness has entered the “gray zone” between treatable and terminal illness. These are patients who may need both chronic care and acute care, as well as advanced care and eventually end-of-life care. They face a progressive disease process.

Persons with advanced illness represent a growing population in our aging society whose needs, along with their family caregivers’ needs, have been largely unmet by current health delivery and financing systems. The resolution urges development and implementation of innovations that prioritize person-centered care planning and coordination, home-based supportive services, palliative care, expanded research in delivery practices and standards, greater workforce development, effective health information technology, and finance and payment mechanisms that support care coordination and care management services.[2]

Our fragmented, uncoordinated approach to advanced illness exacts a terrible toll from our sickest and most vulnerable citizens and their families. This may be best illustrated by a story submitted to the Institute of Medicine (hereinafter IOM) as public testimony during the IOM’s preparation of its recent major report, Dying in America: Improving Quality and Honoring Individual Preference Near the End of Life:[3]

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.[4]

The inadequacies of current approaches also place a growing burden on our health care system. Hospital treatment of advanced illness absorbs a large fraction of the Medicare budget. Over one quarter of all Medicare expenditures pay for care in the last year of life, a proportion that has not changed much in 35 years.[5] Research by the Centers for Medicare and Medicaid Services (CMS)[6] shows that about 30 percent of this final-year spending is concentrated in the month prior to death, and 80 percent of Medicare dollars spent during that final month go toward hospital treatment. Moreover, geographic variability in expenditures bears little relationship to patient diagnoses, preferences, or other patient-related factors, but rather to supply of services and hospital beds.[7] Among Medicare beneficiaries who died between 2001 and 2005, Medicare in-patient costs for the two years prior to death varied almost fourfold across hospital regions, from about $15,000 in Dubuque, Iowa to more than $57,000 in Manhattan. In New York alone, inpatient spending was highest in Manhattan ($57,360) and the Bronx ($53,716), while costs were about one-third of that level in Binghamton ($18,339) and Elmira ($19,664).[8]

Most individuals facing advanced illness are not yet eligible for hospice, and many are reluctant to become “hospice patients,” often because health professionals lack skill in broaching the subject and because acceptance of hospice requires the individual to forgo regular Medicare benefits.[9] For these and other reasons, hospice is often not used as effectively as it might be. Although it was conceived as an alternative to hospitalization, hospice today often amounts to a brief final addendum to a long siege of aggressive inpatient care.[10]

The concept of “terminal condition” as a useful clinical or policy trigger for care has failed. Clinically, prognoses remain ambiguous even very close to death. For example, in one study of persons dying of heart failure, the median length of life prognosis on the day before death was a 50-50 chance of living another six months.[11] The timing of death is not precise. Good care for the dying requires taking care of many who will live for a long time with their serious illness. Accordingly, this resolution adopts the terminology of “advanced illness,” as defined above, rather than focusing on terminal condition or end of life. Advanced illness spans the progression from chronic to end-of-life care.

The resolution reflects an emerging model policy framework for access to care by persons with advanced illness. Pilots of this model have been shown to pay off in better person-centered care and in savings to Medicare. Research published by the Agency for Healthcare Research and Quality[12] and in journals such as Health Affairs[13] and the Cleveland Clinic Journal of Medicine[14] has found that prototypes such as Aetna’s Compassionate Care®[15] and Sutter Health’s Advanced Illness Management[16] (AIM)® achieve excellent patient, family and physician satisfaction scores with savings of over $2,000 per program enrollee per month. Savings are produced, not by cutting or denying services, but by providing a new kind of care management and informed decision-making to ensure that personal choice drives treatment.

A growing body of research supports the principles detailed in this resolution, including analyses done by the Institute of Medicine,[17] National Academy of Social Insurance, [18] the Urban Institute,[19] the Centers for Disease Control and Prevention,[20] and America’s Health Insurance Plans (AHIP).[21]

What this Resolution Does

The resolution is based upon elements identified in existing innovative models of advanced care in the literature that have been shown to work. Their key elements are reflected in the principles and policy framework articulated both by the Coalition to Transform Advanced Care (C-TAC) and the Institute of Medicine. C-TAC is a diverse alliance of more than 100 patient and consumer advocacy groups, health care professionals and providers, private sector stakeholders, faith-based organizations, and health care payers with the mission to help provide all Americans, especially the sickest and most vulnerable, with comprehensive, high quality, person- and family- centered care that is consistent with their goals and values and honors their dignity.[22]

The resolution promotes the following:

  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 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 lacks concepts of shared risk and shared accountability, thereby encouraging reimbursement for quantity over quality.[23] Fee-for-service also tends to isolate episodes of care over time, such that providers may treat recurring medical events in isolation of one another, resulting in repeated tests and other diagnostic work. There is little incentive to integrate treatment over the course of time in order to better treat the whole person, rather than discrete problems. Multiple promising initiatives have been underway under the CMS Center for Medicare and Medicaid Innovation but the evidence base for effective finance and payment mechanism is still at an early stage.[24]

Care coordination and care management that reaches across care settings, treatments and provides continuity over time has been shown to be an essential component of quality chronic care.[25] It can be provided through multiple modalities, but its success depends on its engagement with the patient and its reach across time, place, and treatment.[26]

The IOM’s recent Dying in America report recommends “financial incentives for…

Medical and social support services that decrease the need for emergency room and acute care services,

Coordination of care across settings and providers (from hospital to ambulatory settings as well as home and community).

The IOM report also directly addresses the need for person-centered care recommending that it “be seamless, high-quality, integrated, patient-centered, family-oriented, and consistently accessible around the clock.”[27]

Patient-centeredness is one of the six key elements of a well-functioning health care system, defined by the Institute of Medicine in its 2001 landmark report, Crossing the Quality Chasm,it defined patient 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.”[28] It further elaborated on several dimensions of patient-centered care: (1) respect for patients’ values, preferences, and expressed needs; (2) coordination and integration of care; (3) information, communication, and education; (4) physical comfort; (5) emotional support—relieving fear and anxiety; and (6) involvement of family and friends.[29] 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.[30]

  1. 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.[31] At its best it takes place within a community-wide health system that organizes itself to engage patients and those closest to them in discussion of their values and their healthcare goals.[32] Care plans are recorded and documented so that all health providers have access to them and know how to use them to provide the right treatment at the right time. The ultimate goal is to make sure that patients receive just the treatment they want based on informed decisions and to avoid over- or under- treatment.[33]

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.[34] The IOM describes the ideal model as a “Life-Cycle Model of Advance Care Planning” beginning at adulthood as part of primary care and continuing 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.[35]

  1. 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 DHHS Centers for Medicare & Medicaid Services (CMS) and the National Quality Forum (NQF) both provide a definition of palliative care, used 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.[36]

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 health care 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.[37]

Most people with advanced illness prefer to remain at home and, when the time comes, to die at home.[38] Thus, access to palliative care in the community is essential,[39] along with community-based supportive services to enable the individual to remain in the community[40]and to help family caregivers who provide the majority of care to family members with disabilities.[41] Palliative care has also been shown to increase patient and family satisfaction with care, lower costs,[42] and, in some cases, increase longevity for dying patients.[43]

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

Pay-for-quality initiatives have become an increasingly important policy strategy for improving quality performance and reducing health care costs in the United States.[44]

This trend in health quality requires meaningful and feasible quality measures. 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 care population across care settings, across providers, and over time.[45]

There has been progress, most notably through the National Quality Forum (NQF) which in 2012 released its report endorsing 14 measures for accountability and quality improvement in palliative and end of life care,[46] but much still needs to be done. 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.[47] It has also been attempting to identify appropriate measures for care coordination, which is especially challenging because it is a complex, multi-dimensional concept.[48]

  1. A strong health care 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 insufficient to care adequately for the growing number of Americans with advanced illness for several reasons including:

  • A pending crisis in geriatric workforce capacity.[49] Looming shortages of nurses, primary care physicians, chaplains and other spiritual advisors, direct care workers, and social workers threaten the care of individuals with advanced illness. This will place increased burden on family caregivers, who currently provide the vast majority of long-term care and, increasingly, complex care with inadequate training.[50]
  • Existing Medicare and Medicaid regulations and payment systems 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 (“dual eligible”).[51]
  • Advanced illness focused training and protocols are lacking. There is little communication among health care providers, especially across care settings, and little incentive to coordinate services with other providers. In addition, care professionals need training in the provision of basic caregiving and supportive services that can be helpful to individuals with advanced illness and avoid adverse and unwanted health outcomes (e.g., person-centered decision-making skills, care planning and transitions, palliative care knowledge and skills, medication management, etc.).[52]

One of the key recommendations of the IOM Dying in America report states: