Editor’s note: This post is part of a periodic Health Affairs Blog series on palliative care, health policy, and health reform. The series features essays adapted from and drawing on an upcoming volume, Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Care Reform, in which clinicians, researchers and policy leaders address 16 key areas where real-world policy options to improve access to quality palliative care could have a substantial role in improving value.
If the needs of older adults with serious illness are to be met in ways that are different from today, then the education and training of physicians and nurses will need to be different.
The fundamental approach to decision-making for the older adult with serious illness needs to change from the standard approach to the palliative care approach. In the latter, overall goals of care are established for the patient in the context of his or her family. These goals take into account what is known about the illness, what is inevitable versus what is modifiable, the prognosis, and patient and family preferences. Then, plans to achieve these goals are established.
In contrast, the standard approach is to first, identify all of the problems through diagnostic testing and then to solve each of the biological problems. This approach has guided American medicine since the 1970s and assumes that a person’s health is the sum of the component biological parts.
From the Standard Approach to the Palliative Care Approach
Clinicians are developed by apprenticeship; they learn by doing. Consequently, meaningful changes in clinician behavior with regard to palliative care will not be achieved unless such clinicians observe the desired approaches modeled by others that they respect, then practice under supervision, and are rewarded when they so practice.
Historically, in the U.S., as elsewhere in the western world, the care of older adults with serious illness was seen as a routine part of life;.it was accepted that older people would become frail and ill, and eventually die. That changed, however, in the second half of the century, when doctors began to push back against the inevitability of aging, applying the scientific method to human illness, in the hope of deconstructing the process of getting old and dying into component parts that could be addressed.
Older adults were no longer dying of “natural causes” but rather from the consequences of atherosclerotic diseases (myocardial infarctions, stroke, congestive heart failure) or lung disease (primarily smoking-induced emphysema) or dementia. The scientific method demonstrated successful cures of such common causes of death.
While this scientific approach also markedly reduced infectious diseases as a cause of death, chronic degenerative diseases such as cancer, heart failure and dementia became more common. Person-centered concerns including function, cognition and quality of life were marginalized in favor of those things that were amenable to the new scientific model of American medicine. It became apparent, however, that science could not eliminate disease and death.
A New Topic of Conversation
The disconnect between the scientific approach and person-centered concerns became a topic of conversation in the 1960s. Patients wanted to talk about their impending death when modern medicine was not able to change the eventual outcome.
Elizabeth Kuebler-Ross from the University of Chicago Medical School did important work in this field. She brought together real patients facing death in teaching sessions with medical students, residents and other students. Kuebler-Ross’ work was striking and effective in that she modeled the new behavior in front of doctors working with real patients.
But teaching hospitals and “standard” medicine did not embrace the change. Despite this resistance to change, a grass-roots ‘hospice movement’ started in North America with the creation of a large number of hospice programs that provided support teams in the patient’s home. Unfortunately, this occurred far away from where new physicians and nurses were apprenticing in the nation’s teaching hospitals.
Palliative Care Education
While the changing societal needs and an aging, chronically ill population requires that medical and nursing education respond in kind, there is no clear evidence of “what works” in education reform.Simply extending existing resources to add palliative care is not a workable plan, given the absence of faculty skilled in palliative care and infrequent structured performance-based assessments. There is a need for faculty training and additional education models and curricula to integrate palliative care in educational programs.
Although some medical schools have curricula on death and dying, the education is provided predominately through scattered didactic courses during the preclinical years. The effectiveness of the curricula is limited by the absence of immediate clinical application of the material, and hence, no opportunity to develop the necessary skills to alleviate the suffering of the patient and their loved ones.
Although several national organizations have presented curricula and position statements on the importance of this subject, no clear standards or widely adopted curricula have yet emerged for either undergraduate or graduate training in palliative medicine in the United States, or for clinical practice in the hospital, nursing home or hospice, with the exception of one facet of palliative care—pain management. Postgraduate training of physicians is a little better.
Recent initiatives have begun to address the need for palliative care education. These efforts include development and dissemination of new educational recommendations, training materials, and training requirements at both the medical school and residency levels and for nursing students and other health professionals.
In response to a clear need, private and public groups have worked to determine the core competencies that physicians, nurses and others should possess in order to provide adequate palliative care for patients and their families. The Liaison Committee for Medical Education (LCME), the accrediting body for all 126 medical schools in the U.S., mandated that all accredited medical schools must include education in palliative care. Similar standards were established for the 16 Canadian medical schools, with the American Association of Colleges of Nursing (AACN) also embracing such standards.
A major step forward to meet this educational need was the development and initial dissemination of the Education for Physicians on End-of-life Care by the American Medical Association that has reached more than 90,000 practicing physicians. This curriculum has been widely adapted to teach medical students, residents, nursing students, social workers, chaplains and the public.
The companion national effort is the End-of-Life Nursing Education Consortium (ELNEC) project, to develop educational tools for undergraduate nursing faculty to ensure that core skills in palliative care were taught as part of the core nursing curriculum. The ELNEC curriculum has been adapted for nurses in practice as well as in special populations and settings.
Since 2000, the American Association of Colleges of Nursing (AACN) has partnered with the City of Hope to develop and disseminate palliative care education to undergraduate and graduate nursing faculty and students as well as practicing nurses through ELNEC. In the first 14 years of this project, over 17,500 nurses and other members of the interprofessional health care team, from all 50 states, the District of Columbia, Puerto Rico, and 78 countries have attended a national ELNEC course.
However, classroom teaching on topics such as pain and symptom management, bereavement support, and communication are best reinforced in the clinical setting. Structured mentoring of nurses new to palliative care is needed.
The Integration of Palliative Care into the Health Care System
Palliative care is the responsibility of all physicians. This includes basic approaches to the relief of suffering and improving quality of life for the whole person and his or her family. It also includes the establishment of overall goals to care for those with serious illness.
Knowledge alone will not change practice and hence, patient and family experience. But formal recognition of palliative medicine and palliative nursing is a first step. A 1997 report from the Institute of Medicine (IOM) set the stage for specialization in the health care system’s approach to end-of-life care by calling for the development of specialty-led professional expertise in palliative medicine in the United States. A new report from IOM on end-of-life care is scheduled for publication at the end of June.
Palliative medicine and nursing needs to be integrated throughout the care system. To achieve the necessary policy and behavior changes to reach this goal, concerted efforts must be made at all levels in medical schools and nursing schools, with extensive continuing education in palliative care required for physician and nurses already in practice. To achieve the necessary policy and behavior change, concerted efforts must be made at various levels.