Papa Day: Admiral Byrd with His Dog; Willard Day Boyer (Papa Day), 1995

The difficult questions raised by individuals as they near life's end resonate with deep spiritual significance. What and why is death? Is there any meaning or value in the experience of dying? What is the role of hope in the care of the dying? Do dying and death offer anything to those who are not at life's end?

The existing medical model, built upon Cartesian-Newtonian reductionistic and deterministic assumptions, is ill-equipped to meet not only these spiritual questions, but also the need for physical comfort at life's ending.

Since the only permissible goal of patient care in the medical model is to cure or stop the progression of disease, patients whose disease continues to progress can be seen only as failures.

Therefore, as patients approach death, medical practitioners tend to do even more of the same kinds of things that have not prevented the disease from progressing, regardless of the physical, emotional, or spiritual stress these efforts cause patients and their families. Meanwhile, the absence of adequate palliation—pain control, for example—has been widely documented.

It was this inability of the medical model to deal with the reality of patients who die that motivated Dame Cicely Saunders and the interdisciplinary team she gathered in London in the 1960s at St. Christopher's Hospice. Accepting that death is a normal part of human life, Dame Saunders and her team established a system of comprehensive care that embraces the physical, emotional, spiritual, existential, and relational dimensions of dying.

The focus of physical care in hospice is aggressive management of symptoms that cause distress. Without successful symptom management patients have little energy or ability to address the other stressful issues involved with dying, including those that are spiritual and existential.

Hospice Comes to the U.S.
The integration of the spiritual mission of hospice continued through the work of Florence Wald and her team in New Haven, Conn., as they planted the British model from St. Christopher's Hospice in American soil in 1974.

Hospice in the U.S. in the 1970s was essentially a grassroots movement that was radically mission-driven, volunteer-intensive, and dedicated to providing an alternative for individuals at life's end. Clergy and religious institutions often provided leadership, resources, and volunteers.

During this time the work of Elisabeth Kübler-Ross, Gerald Jampaulsky, and Steven Levine, among others, focused very directly on the spiritual nature of the dying process. Within religious communities themselves there was an emphasis on engaging the community as an instrument of social change. Internally, congregations experimented with how to provide more meaningful corporate worship experiences and deepen the personal spiritual practices of individual members.

Hospices benefited from all this activity as they sought to provide clear options so that persons could self-direct the quality of their dying by experiencing a broad range of visualizations, guided imagery, art and music, and spiritual practices. In this manner, the dying are "empowered" to review life. Using spiritual resources, the dying bring closure to life through attention to reconciliation, identity, meaning, purpose, and transcendence.

Regulating Hospice
Congress affirmed the earlier successes of the hospice movement when in 1982 it voted to include hospice as a benefit covered by Medicare. In order to preserve the uniqueness of hospice while institutionalizing it, several requirements were built into the regulations that exist for no other healthcare provider: at least 80 percent of all care must be provided in the community at home; at least 5 percent of all care must be provided by trained volunteers; spiritual counseling is a required core service, not an option; and bereavement services must be provided for family members.

Impact of Reimbursement
The establishment of reimbursement resulted in a rapid expansion of the number of hospice providers with a corresponding dramatic increase in the numbers of patients and families who could access hospice care.

Consequently, hospices were established less to provide an alternative self-directed choice to traditional health care and more as another program of existing healthcare providers, such as hospitals, home health agencies, nursing homes, and for-profit and not-for-profit healthcare systems. These providers brought a business orientation that had not been necessary when hospice was almost exclusively a voluntary enterprise. Business expertise was essential because hospices had expensive drugs and treatments to pay for, salaries to support, and programs to maintain. Some flexibility and freedom were lost as the regulations and reimbursement scheme standardized admission criteria, mandatory services, policies, and staffing patterns.

What of Spiritual Care?
Spiritual care is provided in the nation's 3,000-plus hospice programs in a variety of ways, whether by chaplains trained in Clinical Pastoral Education or by community clergy. The "role blurring" common in hospice means that spiritual care may also be provided by physicians, nurses, social workers, aides, and trained volunteers.

This care may address spiritual conflicts that sometimes arise in the disjuncture between personal experience and religious beliefs. The care may also address the presence of guilt, the need for forgiveness, the experience of reconciliation, completion of unfinished or unresolved business, fear of retribution and/or punishment for wrongs, the need for rituals and prayer, and the fear of abandonment and isolation. These specific issues arise within the larger context of reviewing life, sensing closure, and experiencing transcendence.

Challenges to the Spiritual Work of Hospice
Because of changes in regulatory oversight, federal fraud and abuse initiatives, and shifting interpretations of legal requirements, there has been a significant decrease in the length of stay of the majority of patients admitted into hospice programs. Approximately two-thirds of all hospice patients die within 30 days of admission. Hospice programs, thus, are doing more crisis management—because death is imminent—rather than facilitating a thoughtful, intentional, progressive experience of the end of life that stresses its spiritual dimensions and meaning.

Although hospices in the 1970s primarily served an elderly white, middle class, well-educated cancer population, the advent of AIDS in the 1980s challenged hospices with different populations—and needs—and with corresponding radical differences in spiritual orientation and approach. As hospice has widened to serve more and different kinds of patients and families, it confronts the challenges of structuring and delivering end-of-life care to persons with very different belief systems, values, cultures, family structures, economic and education status, religious traditions, spiritual practices, and expectations of the meaning and value of life's ending.

To answer these challenges we look to the historic creativity of the hospice movement, the way it engages cultural forces to change Americans' attitudes and perceptions about dying and death, and how its boards, paid staffs, and volunteers reflect and identify with the diversity of populations in the community served by the hospice. Central in this creative work will be the reframing of the core of hospice's inherited spiritual mission: What does it mean to be dying?

Paul R. Brenner is Executive Director of Jacob Perlow Hospice, Beth Israel Medical Center, New York, N.Y.