New Frontiers in Quality of Life: A Challenge to Muslim Professionals
by Dr. Robert Dickson Crane*
The Paradigmatic Revolution of Holistic Care
In 1969, Thomas Kuhn introduced the concept of paradigms and paradigmatic change by contending that major changes in civilizations occur not slowly by increments but rapidly in qualitative jumps. Soon thereafter, the science of chaos theory proved that in all the sciences and in every phenomenon of nature the established order continues by blind momentum until it conflicts with external or exogenous changes and produces chaos. Then suddenly a new paradigm appears to restore order based on an underlying coherence of reality that could not be directly observed.
The classic case of paradigmatic change is the shift from an earth-centered view of the cosmos to a sun-centered concept and finally to the modern astronomical theory that our earth and sun are relatively insignificant specks in a cosmos that in every way is simply beyond our imagination. This, in turn, is supporting the ancient view that the center of reality is the transcendent consciousness and sacred value of every sentient being.
The same series of paradigmatic revolutions has occurred over the centuries in the field of medicine. The latest one is the introduction of holistic care, which is returning the profession to where it started centuries and even millennia ago. This holism is found most strikingly in hospice, which is the new art and science of caring for the terminally ill.
The hospice movement is considered by some to be a post-modern reaction to the modernist desacralization of the person and community. The triumphalist attitude toward the conquest of nature and disease has brought improvement in standards of living but has undermined the traditionalist reverence for the human transition from this life to the next. All the world religions at their core have viewed death as a natural phase of life, as something that should be accepted without fear and even as the greatest moment of one’s life.
Medical schools traditionally have taught only curative care in the war against disease in superficial fulfillment of the Hippocratic Oath, but in recent years they have introduced courses and even degrees in hospice care designed to expand the meaning of the Hippocratic Oath in order to promote the quality as distinct from merely the quantity of life.
This new reorientation from extending life at all costs toward improving the well-being of care recipients as long as life lasts started as an organized movement in response to advances in palliating the pain of cancer patients. Older practitioners may remember the case of the visiting medical director who observed an older person in a cancer ward whose entire body was contorted in agony from unendurable pain. When he inquired about the case, he was told, “Oh, that one has been there for two days. He is dying so there’s nothing we can do for him.” Medical schools now teach their students that severe pain is no longer necessary and that such callous disregard for the comfort of the dying is malpractice.
The History of Hospice
The hospice movement to avoid the prolongation of suffering from useless effort to conquer death or from the opposite extreme of ignoring the dying was not invented thirty years ago in America, as most professionals in the field simply assume. The culture of accepting the inevitable in order to focus on easing the path from one phase of life to another has roots extending back centuries and even millennia to periods when dedicated spiritual leaders gave nurturing refuge to those in need because God loves every person and because hospice is a beautiful means for care givers to return this love.
Every child has heard of the giant Saint Bernard dogs in the European Alps who used to rescue travelers caught in blizzards by providing a little whisky in a flask to warm them up while the dogs led them as sure and powerful guides to the closest hospice. In Medieval Europe, monasteries, both large and small, served as multi-functioning sanctuaries for everyone in need, the stranded wayfarers, orphans, and religious pilgrims, and for women in labor at the beginning of life and for both women and men at its natural end.
The most famous hospice care-givers in history, at least in Western culture, were the Knights Hospitalers of the Order of St. John of Jerusalem, who in their monastery on the island of Rhodes established a separate hospice for the incurably ill. This may be considered the origin in Europe of the modern hospice tradition, whereby caring for the dying is not considered to be so much of a burden as an opportunity to ease the path of one’s fellow beings from this world to the next.
The closing of religiously motivated hospice care two or three centuries ago in Europe as part of the campaign against monasteries and formal religious institutions started a trend away from the concept of personal commitment of persons in community and toward collective governmental responsibility. Hospitals became efficient laboratories to combat disease, but were seldom equipped to offer comfort to a “traveler” near his or her journey’s end.
As formal religion lost influence in the “West,” the cultures of spiritual awareness from “Eastern” and even Native American cultures began to help fill the gap. The concept of hospice in these cultures has been a source in recent years for adaptation through such works as David Clark’s Traditions in End of Life Care: Hospice and Related Developments in Eastern Europe and Central Asia (Facing Death), by Terese Maruyama’s Hospice Care and Culture: A Comparison of the Hospice Movement in the West and Japan, and by Sylvia Crossman’s Hozho, peintures de guerison des Indiens Navajo.
At the same time, efforts have been made for more than a century to study the old European hospices as models for the present, as evidenced by works such as Richard Wallace’s Les hospices de Paris et de Londres, published in 1877, by Henry W. Shoemaker’s “A Visit to the Great Saint Bernard,” published in 1926, and 125 Years of Caring in Dublin: Our Lady’s Hospice, Herold’s Cross, 1879-2004, published in 2004.
The turn-around came to fruition during the cultural turmoil of the 1960s, when Dr. Cicely Saunders defined and pioneered a hospice program in 1968 at St. Christopher’s Hospital in London, and when the next year Elisabeth Kubler-Ross published her On Death and Dying in America, which now ranks with Rachel Carson’s book, The Silent Spring, from the same era as a classic in developing new perspectives on life and death.
Both of these seminal thinkers focused on the power of new technologies and chemical processes in modern civilization. At the time, the greatest frontier in medicine was cancer research, and Dr. Saunders began her career by improving methods of pain control in terminally ill cancer patients. This developed into the concept of “sheltering” the dying from pain by new techniques of palliative care, which then expanded naturally into the idea of holistic treatment of all terminal pain, including the psycho-social and the spiritual. She had returned full circle to the original concept of hospice that has existed in all cultures since the beginning of human communities but had died out under the onslaught of radical secularism. During the next forty years Dr Cicely Saunders operated her St. Christopher’s Hospice in London as an international education, training, and research center and has become a symbol of modern hospice.
As with all new paradigms of thought, the modernized version of the ancient hospice concept caught on fast. The hospice movement in America spread through grassroots initiatives to provide special supportive care in a local community for both dying persons and their loved ones at home, so that the immediate family as far as possible can remain as the primary care-givers. This emphasis on private, non-governmental initiative entirely by volunteers based on their individual commitment without any government funding or private insurance, and without any administrative overhead or structures and rules, permitted a flexibility and creativity unknown to the medical establishment. In many cities of America this free-wheeling approach made it possible to innovate with alternative medicine and group therapy sessions for both the hospice patients and their families, sometimes including even music and art workshops.
Although these community based hospice programs still exist, hospice soon became a new industry that changed the nature of medicine and eventually led to required courses in hospice at the best medical schools. In 1972, the U.S. Senate Special Committee on Aging held hearings on death with dignity and on shifting elderly care from institutions to the home. This led to the first legislation to provide federal support to hospice programs.
The initial interest was in alleviating pain in cancer patients. In 1974 the National Cancer Institute funded Connecticut Hospice as a demonstration program. Further studies led Congress in 1983 to expand the Medicare program by providing a broad-based hospice benefit. Soon thereafter many private insurers recognized the benefits and cost effectiveness of hospices, for both care recipients, care-givers, and insurers, as described in chapters three and four of the author’s hospice manual, Hospice: New Frontiers in Quality of Life, and began to offer hospice benefits.
Another decade later in 1991, Congress passed a Hospice Patients’ Bill of Rights in the Patient Self Determination Act (PSDA) to promote and insure the hospice patient’s informed consent, for example, by requiring advanced medical directives through a living will and/or a durable medical power of attorney.
When government funding began to replace private non-reimburseable hospice care during the 1980s, the scale of hospice care increased dramatically and so did the need for proper oversight to assure uniform quality of care. During the next decade, in the 1990s, this increase was driven primarily by the skyrocketing cost of institutional care, especially in hospitals. This change in the competitive health care industry, which brought many hospitals close to bankruptcy, caused a shift in the expense of terminal care from hospitals to nursing homes and from both of these to home care. Studies of the economics of the health care industry showed that by the Year 2000 a quarter of all Medicare costs went to people in the last year of life, and half of this was in the last two months, primarily in expensive hospitals.
According to the National Hospice and Palliative Care Organization (NHPSO), despite the growth of hospice, only 25 percent of hospice patients died in their own homes. This percentage is growing, as shown by the increase in hospice programs in the United States from one in 1974 to 1500 a decade later and 3,700 in 2006, and also by the number of patients in each program and the percentage of those in each program who remain at home rather than go to institutional hospices. The number of hospice patients is growing in both skilled nursing facilities and home care, but the increase in home care seems to be growing faster because a major purpose of hospice care is help the terminally ill die in familiar surroundings with loved ones.
The Hospice Team
An important reason for the shift to hospice is not merely the cost saving but the better quality of care and the emotional benefits that the hospice team can facilitate at the patient’s own home. Many hospice patients have been through lengthy curative treatments by invasive surgeries, radiation, and chemotherapy while they are confined in hospitals and nursing homes. When it is clear that such curative treatments are only producing more suffering without any hope of cure, the role of home hospice is to help the patients remain at home in familiar surroundings to be with their loved ones in a care program that emphasizes the relief of pain and treatment of the symptoms of the underlying terminal disease. This symptomatic treatment is known as palliative care.
The concept and practice of hospice care as a new, holistic discipline is a permanent part of modern life, because it is an important response to changing cultural conditions. Perhaps the most important are: 1) a reaction against the impersonal secularization of society and the accompanying desacralization of life, as discussed above; 2) the renewal of spirituality in all religions as part of a broader cultural transformation; 3) greater awareness of the availability of assisted suicide and of hospice care as a better alternative at the end of life, similar to the choice between abortion and adoption at its beginning; 4) organized grass-roots efforts to provide life-affirming answers to such ethical questions; 5) demographic changes evident in the burgeoning elderly community, combined with the emergence of an educated and organized majority demanding better value and service through alternative methods of care and treatment; 6) the revolution in all fields of social science toward emphasis on quality of life; 7) technological and pharmacological advances that make quality improvement possible; and 8) advances in the health care delivery system demanded by the tax-payers who want better care at a fiscally and politically sustainable cost.
The unique purpose of hospice, as distinct from the curative medical model, is to provide appropriate care and a caring community of family and hospice team members sensitive to the patient’s needs so that the person cared for may remain in familiar surroundings and better prepare mentally and spiritually for the major transition from this life to the next.
The overall standard set out by the National Hospice and Palliative Care Organization, which was founded in 1978 as the first national hospice association, is simple:
Hospice affirms life and neither hastens nor postpones death. Hospice provides support and care for persons in the last phases of incurable diseases so that they may live as fully and comfortably as possible. Hospice recognizes dying as part of a normal process of living and focuses on maintaining the quality of remaining life.
The care of terminally ill patients is an evolving medical specialty that requires special knowledge, training, and skills. Medical schools now teach the principles of pain in order to relieve it, and they educate future doctors to treat other symptoms of terminal illness, such as dyspnea (labored and painful breathing), respiratory secretions, dysphagia (difficulty in swallowing), cough, painful hiccups, nausea, cachexia (ka-keks-e-a, dehydration and emaciation), constipation, diarrhea, bowel obstruction, pruritis (skin inflammation), neuropathy (nerve pain), fatigue, anxiety, severe depression, and delirium, and combinations of these.
Hospice care is provided by an interdisciplinary team under the supervision of a registered nurse (RN). The team members consist of nine specialists in addition to the team physician. These nine are:
1) The Social Worker as a member of the team addresses the
financial, housing, and emotional needs of the patient’s
caregivers at home.
2) The Dietary Consultant functions to assure adequate and suitable nutrition, for example, for diabetes or patients with cachexia.
3) The Chaplain offers spiritual help by working together with the patient’s own religious guides. Hospice clinicians can now eliminate 90% of the dying person’s physical pain, but holistic treatment by the Chaplain and hospice team is needed to address spiritual pain and avoid any thought by either patient or care-givers of resorting to assisted suicide.
4) The Bereavement Counselor provides psychological support for the grieving family until up to 13 months after the patient’s death in order to alert professionals to any serious depression and to help family members through the grieving process.
5) Volunteers provide a responsive ear to the patients, read to them, offer transportation, do shopping, prepare meals, take care of plants and pets, and so forth, depending on the patient’s needs. They can devote more time to individual patients than can the nurses and professional caregivers and can even offer respite care for several hours so that the constant family caregivers can be freed from time to time to lead their own lives.
6) Physical therapists help in safe positioning and movement and generally in making the patient more comfortable, as well as to facilitate the patient’s maximum level of physical and psychological independence through energy conservation techniques and safety measures.
7) Speech therapists deal with cerebral vascular accidents (CVA), tracheotomies, laryngetomies, and various neurovascular diseases.
8) Home health aides, known as Certified Nursing Assistants (CNAs), provide personal care and assist with activities of daily living. Under the supervision of the RNs they are the frontline eyes and ears of the hospice team.
9) The pharmacy specialist provides service, education, and information about medications, reviews the medication regimen, and participates in the IDT meetings.
The tenth member of the team is the hospice physician or Medical Director, who serves as a resource for the hospice in all its work. He certifies the need for services, advises on the Plan of Care, and signs all verbal orders. The hospice physician provides guidance on revising policy and procedures and serves on the hospice’s advisory committees and governing board.
The direct management of the Interdisciplinary Team can be by consensus or under the direction of an RN Leader. The Team meets at least every two weeks to monitor and update all patient care, with more frequent meetings and telecoms as needed. The Team reports at a monthly meeting to the hospice’s Administrator / Executive Director.
The hospice physician participates in the regular meetings of the interdisciplinary team or group (IDT or IDG) as a consultant for problem solving in meeting the patient’s needs. He serves as liaison with the patient’s primary doctor, if any, and visits the patient as needed. He also cooperates with the Director of Volunteers by supporting the hospice organization through teaching and educating the surrounding community.
Hospice has grown medically out of increased knowledge in the fields of oncology, geriatrics, and psychotropics. Hospice physicians are required to receive continuing education from such organizations as the American Academy of Hospice and Palliative Medicine in order to keep up with the state of the art. The medical profession now offers board certification from the Board of Hospice and Palliative Medicine (ABHPM) designed to qualify doctors to serve as hospice medical directors and to function not as independent entrepreneurs but as members of a team.
Since hospice care is holistic, designed to care for the physical, social, emotional, and even spiritual needs of the dying person and also of this person’s family, the roles of independent or family physicians and team physicians differ in important ways.
Since the hospice physician interacts not solely with the patient but with all the members of an interdisciplinary team, he is not the focus of attention, an autonomous Chief Executive Officer or CEO, but a participative and collaborative consultant. At the same time, he is expected to provide continuing education for other team members at the Interdisciplinary Team’s meetings.
In many cases, the patient continues with his or her own personal doctor, so that the hospice physician functions as a clinical advisor to this doctor. In other cases, the patient’s doctor turns the patient over entirely to the hospice physician. In all cases, the patient or the patient’s representative has the final authority over the entire hospice team’s program of care.
The holistic revolution in modern medicine best exemplified in hospice has not yet run its course and, in fact, is constantly building. Legislative initiatives are on the books to expand the role of hospice care beyond the limitations that have served well in the past. Many advocates for expansion of Medicare coverage would like to broaden the availability of hospice care to those who could benefit from it but do not now qualify. This provides a challenge for Muslim professionals to enrich the emerging spiritual revolution in America with the wisdom of hospice as once practiced in the classical period of Islam.
The inevitable institutionalization and bureaucratization resulting from government funding need not detract from the personal commitment that gave rise to the modern revival of hospice care. Wise legislators have tried to assure the continuance of hospice as an issue of conscience by mandating that a percentage of the hospice work continue to be carried out by unpaid volunteers. These volunteers not only contribute whatever skills they have to help individual hospice patients but serve as the public eyes and ears of the hospice movement and as educators for the broader public. The hospice movement has been successful because volunteers, including Muslims, traditionally have been on its front lines in promoting this revolutionary innovation in quality health care. They must continue to play an essential role in maintaining the movement’s original inspiration.
* The author of this article earned a doctorate, J.D., in comparative legal systems and normative philosophy from Harvard Law School. He joined the hospice movement in 1985 when he served as a Muslim representative to the Interfaith Conference of Metropolitan Washington (IFC) and as Director of its Dialogue Commission. He is currently Director of Volunteers and Community Relations at Maximum Hospice and Palliative Care, Inc., located in Chicago, Illinois.