Introduction
The movement to improve care for the dying is world wide. For the past two and a half decades, American hospice has been part of that global effort. Today, Palliative Medicine is recognized as a formal medical specialty in the United Kingdom and Australia and our colleagues in Canada are working toward that end. These international efforts and experience represent a resource upon which we, in America, can draw.

Hospice in the United States began in the 1970's as a grassroots response to unmet needs of patients and families encountering known, incurable illness. From its roots as a social movement, hospice has served as a cradle for the evolution and maturation of palliative care. Hospice is now recognized as the dominant mode of palliative care; indeed, the word "hospice" has come to signify care for the dying that is patient and family centered and focused on comfort and improving quality of life.

While hospice is often referred to as a philosophy of care, it is also a form of care that, in America, has been strongly influenced by the Medicare hospice benefit and related reimbursement structures. As the American healthcare system struggles with virtual collapse and simultaneous reformation, innovation in modes of delivery and organization are to be encouraged.

The years of hospice clinical experience, striving to provide comprehensive care for dying patients and their families -- and learning from patients and families about their needs and life experience -- can be built upon as the larger American health care system comes late to realizing and responding to the crisis in end of life care. The Academy of Hospice Physicians and its nearly 1500 physician members represent a resource of knowledge and experience caring for persons and families encountering life-threatening illness.

End of Life Care
Dying patients are, by definition, among the very sickest patients in the healthcare system. When practiced appropriately, hospice care is often a form of "intensive care."

Hospice care represents a genuine team approach to the care of the patient and family and the management of symptoms and suffering. In addition to experienced hospice nursing evaluation, when symptoms are not readily controlled, the active involvement of a physician with special interest and expertise in palliative medicine is essential.

Consultation with specialists in medical oncology, radiation oncology, neurology, surgery and anesthesiology, psychology and psychiatry should be available and utilized as necessary.

The care team must include members with experience and special interest from disciplines of pharmacy, social work, chaplaincy as well as physical, occupational and other allied health therapies. Trained and supervised volunteers from the community can provide support, companionship and help bear witness to the unique stories, sorrows and triumphs of the person departing.

The statement "some physical pain associated with dying can not be controlled" is often repeated and widely believed. However, it is the experience of hospice physicians that physical suffering associated with dying can always be alleviated. Achieving relative comfort among the dying is not always easy. At times it requires enormous effort and fairly aggressive palliative interventions. It is, however, always possible.

How is comfort achieved? One patient at a time. By being careful, meticulous and comprehensive; by being committed to do whatever is required to achieve relative comfort; and by being willing to commit as many resources as are required to the goal of comfort as we routinely do to the goals of lifesaving and life-prolongation.

People with terminal illness have the primary need for symptom management that requires expert, often intensive, medical intervention. Thus, management of distressing symptoms is the first priority for hospice practice --- but it is not ultimate goal.

A key feature that distinguishes palliative care from other aspects of medicine is that, unlike elective surgery, fracture management, treatment of the flu, surgery for acute appendicitis, or even conditions as serious as an acute myocardial infarction, for the terminally ill patient, life can not simply be put on hold while treatment is endured.

Dying is more than a set of medical problems to be solved. The essential nature of the dying process is not medical, but experiential. Dying is, fundamentally, a personal experience. While this statement seems simplistic, its implications are profound.

Understanding the personal nature of the experience, it becomes critical to support the person in maintaining control over decisions affecting not only treatment options, but a full range of choices related to their living situation, relationships and time.

Members of the family -- by which I include close friends -- of the person dying inevitably share the experience of the dying process. Hospice, therefore, recognizes the patient with their family as the unit of care.

Deeper Goals of Hospice Care
But if management of symptoms and the outcome of relative comfort are not the ultimate goals of hospice and palliative care, what are?

Hospice clinicians know, from experience, that when symptoms are adequately controlled dying can become a rich and meaningful time of life for the person and family.

In addition to the symptoms and emotional strain of advanced illness, this time of living we call "dying" also encompasses poignant and important opportunities.

Most concretely, with relative comfort, there is the opportunity to "get one's legal and fiscal affairs in order."

On an interpersonal level -- between family and friends -- an opportunity exists to grow closer together. The context of progressive, incurable illness often represents an opportunity to reconcile previously strained relationships, perhaps between siblings, or between a child and parent or between previous spouses. There is an opportunity to complete relationships, communicating the essence of the "five things:" Forgive me. I forgive you. Thank you. I love you. Good-bye.

On an intra-personal, there is an opportunity for life review, a chance for healing with one's past, a chance to come to peace with one's life-long expectations and through this process an opportunity to deepen ones sense of meaning about ones own life. Beyond this an opportunity exists to explore some of the uniquely human concerns of meaning and a chance to explore some of the deepest existential and spiritual questions of life. Here, too, hospice and palliative care have a role to play.

Those of us who care for the dying will not have all the answers. But it is not our answers that matter. What matters is the commitment to bring our skill and experience to bear toward the goals of, firstly, ensuring comfort and, secondly, preserving personal opportunity. What matters is our willingness to remain involved and to help the person find his or her own answers.

How do we do this? One patient at a time. When it is done well, hospice care involves a host of very simple, clinical interventions. Listening, mostly. Exploring relationships; respectfully, without prying. Gently encouraging the dying person to reach out to others, even those at great distance. Authentic hospice care takes time.

Currently, this unique mission of hospice care -- its unique value to the human experience of dying -- remains unrecognized by the health care system. Medical ethicists and health policy makers refer to hospice only in terms of symptom management or "comfort care," and thus, miss its potential to teach the deeper essence of human caring.

Obstacles to Care
The problem-based approach to care serves well when applied to the management of symptoms of terminal illness but it fails to address the fuller needs of persons and families living with progressive decline and in the shadow of imminent demise. Currently the goals of medical care for the dying are organized around the avoidance or treatment of adverse outcomes. This approach ignores the real needs of patients and families and constitutes a conceptual barrier to comprehensive end of life care. The prevailing model of medicine is built around illness and injury and the goals of cure, life-prolongation, relief of suffering and restoration of function. As discussed, hospice and palliative care looks beyond these goals to embrace preservation of opportunity for the patient and family to grow, inwardly and together. In this regard palliative medicine is similar to neonatal and pediatric medicine which include preserving opportunity for young patients to become all they can be as a central therapeutic goal.

It is well recognized that regulatory restrictions and oversight programs (such as triplicate prescription laws) constitute barriers to effective treatment of symptoms in terminal illness. While the risk of physician sanction for appropriate prescribing is perceived rather than real, without question the perception and special forms and regulatory requirements doubtless contribute to the under use of narcotics and psycho-stimulant medications.

Current diagnosis and treatment coding often leads to a charade in which tests are ordered and treatments begun to secure financial coverage for basic care to continue in the patient's preferred setting. This usually occurs in the hospital where the DRG for the patient's diagnosis has been exceeded, but it also applies to maintenance of skilled nursing visits at home for patients who are debilitated but not in acute crisis. Diagnostic and treatment codes that recognize dying as a non-disease-specific category requiring comprehensive care would be helpful.

Outcome Measures
Quality assurance processes in medical institutions and home care agencies should recognize assessment of physical pain and other sources of distress as fundamental clinical data, on a par with vital signs and post-operative infection rates. Outcome measures that reflect issues meaningful to patients and families must be refined and adopted by accrediting bodies.

Medical Education
Currently, medical and nursing education related to care for the dying, instead of being part of the solution, actually contributes to the continuing crisis in end of life care. The little time that is devoted to terminal care is focused on symptom management. And even this is woefully insufficient. Existing mentoring too often models a manner of care that is inattentive to the treatment preferences, emotional experience and physical comfort of the dying patient.

The Academy believes that a basic level of competence in palliative medicine should be part of every physician's training and, thus, part of basic medical education. This must include the science and clinical practice of symptom assessment and management as well as the evaluation and intervention of psychosocial stress in the process of dying.

Teaching facts in absence of a cohesive framework for care and which support the real experience of the patients and families contributes to an overly reductionistic approach to therapeutic planning. When clinicians internalize a meaningful, satisfying framework from which to approach the dying patient and family, requisite facts are readily acquired.

Many Academy members emphasize the value of illness narratives in clinical and ethical teaching. The stories of patients and families tend to capture the fundamental nature of the dying and engender understanding that is not constrained by the conceptual model of medicine.

Undergraduate medical education should emphasize case study format. In this manner ethical decision-making and the management of symptoms can be taught while the experience of the patient and family living with progressive illness and in the shadow of imminent demise can be considered. The stories of our patients and their families constitute a powerful means of fertilizing the clinical imagination.

Mentoring is another essential way of conveying this fuller approach to end of life care and is important at the undergraduate, residency and fellowship level of physician education.

Continuing medical education programs must include greater emphasis on management of symptoms and suffering and on the deeper goals of palliative care. Here, as well, case study format deserves emphasis.

Expertise in Palliative Medicine and the Question of Specialty Status
The question of whether or not specialty status for Palliative Medicine is desirable is potentially divisive. Physicians of various specialties can be expected to have differing opinions on the need for a formal new subspecialty. This question is, however, only one way to frame the issue of how our system of health care should respond to the need for recognized expertise in end of life care.

There is broad agreement that a means of acknowledging documented proficiency in palliative medicine is desirable and that access to physicians with special expertise in the field needs to be expanded. There is also agreement that increased clinical research in palliative care is essential and will require active involvement of physicians with special interest, knowledge and experience.

The Academy supports a three tiered approach to improving the level and accessibility of palliative medical expertise. On a fundamental level, every clinician requires a level of awareness of the issues involved and basic competence in assessing and treating pain and other distressing symptoms. To achieve this goal, curriculum change is required at the level of undergraduate medical and nursing education. Similar changes are required in post-graduate training in primary care specialties as well as subspecialty training of relevant fields (such as oncology, pulmonology, nephrology, cardiology and neurology.) Correspondingly, requirements for Board recertification in primary care medical specialties and, where applicable, in medical license renewal should reflect the importance of correcting acknowledged existing deficiencies in terminal care.

Secondly, each community should have available recognized expertise in palliative medicine for the purpose of clinical consultation, ongoing education, program development and quality assurance. In some communities a single consultant level physician may suffice, while in very large communities, each large medical center or system will require its own consultant(s).

Thirdly, regional specialty centers for palliative medical referral, training and research are required to support the other tiers of this system.

The Academy of Hospice Physicians believes that full specialty status for palliative medicine is presently not necessary. Instead, the Academy has embarked upon an effort to establish an "added qualification" credential in Palliative Medicine. This credential will require existing Board Certification in a recognized medical discipline, documented experience in hospice or palliative care, and satisfactory performance on a certifying examination. To this end, the American Board of Hospice and Palliative Medicine has been established. The mission of the Board is to develop a formal credentialling process and construct and administer a certifying examination. Application to the American Board of Medical Specialties is planned. As a necessary step in this development, an initial examination is being offered in November of 1996.

A Research Agenda for Palliative Care
In recognition of the importance of end of life care, funding resources should be directed toward research in multiple aspects of palliative medicine. Specific areas that would benefit from intensified clinical research include:

• symptom evaluation, particularly with demented or poorly responsive patients and with young children
• symptom management, pharmacological and intervention approaches
• psychosocial assessment and intervention modalities
• outcome measures such as quality of care, quality of life assessment, family experience assessment, bereavement needs and support assessment

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