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The Physician Assisted Living (PAL) Program

THOMAS HOYER, B.S., M.S.

     The Physician Assisted Living (PAL) program repre- sents a bold and I hope successful effort to help people grasp the basic concepts they need in order effectively to make choices about the time they have remaining in their lives. The basic concept, is captured in the title—Physician Assisted Living—living being the key word. Death occurs in a moment and all the time that stretches from birth until that moment is, in fact, life in which choices need to be made. The PAL program promises to create a context that will foster the learning necessary to understanding and choice.

     Begin with knowledge and choice : Alexis de Tocqueville and countless other observers have commented on the individualism that underlies our American social institutions and behavior. In today's society we take the "right" to know all there is to know about ourselves very seriously, even extending it to the right to know what information others might have on file about us. Similarly, wherever there is the option to make a choice, we take the strong view that we have a "right" to choose and included in this, is the "right" to be informed of the options, to be offered choices.

     The Medicare program was enacted with strong provisions asserting that citizens covered by the program would have the right to receive services from any provider willing to meet the program's standards and provide the care. The beneficiary makes the choices; Medicare pays the bills.

     But, of course, choice is rarely a simple issue especially if the facts are complex or obscure. For choice to be a real possibility for people, there must be information about the


THOMAS HOYER, B.S., M.S., director, Chronic Care Purchasing Policy Group in the Health Care Financing Administration' s Center for Health Plans and Providers.* Mr Hoyer has been with HCFA in various positions since 1972. He holds B.S. and M.S. degrees from Indiana University and M.B.A. from Loyola University.

possibilities available, as well as a way for the individuals to receive this information and to consider it in making their choices. The Medicare program has The Medicare Handbook and countless other publications to assist beneficiaries in learning the options and making choices. The Department of Health and Human Services (HHS) also provides grants for insurance and other kinds of counseling for the elderly. Still, the appropriate reach of HHS's efforts extends only to making sure that information is available and to assure that choices are honored. To go further than that is to invade the individual's right to choose.
    
     The result of these limitations is that we have a program that offers the right to refuse treatment; that mandates "rights" for residents of nursing homes and other providers; that requires providers to inform patients of all their rights and potential liabilities; and that instructs providers to ask whether an individual has an "advance directive" and, if so, to provide care in compliance with it. Medicare's hospice benefit, where a patient makes an "election" for hospice services, requires an exchange of information and full understanding between the patient and the hospice provider. We require that the patient acknowledge at least that "he or she has been given a full understanding of the palliative rather than curative nature of hospice care, as it relates to the individual's terminal illness."

     At the time this language was written, it was viewed as an easier way to provide a hard truth about prognosis and its result, but it was done that way because information from the hospice community persuaded HCFA that the task of helping individuals work through the issues in


*This Group is responsible for Medicare policy on durable medical equipment and devices, skilled nursing facilities, home health agencies, hospices, partial hospitalization, end-stage renal disease facilities, program of all-inclusive care for the elderly, and cost report issues.


volved required that hospice personnel spend some time in assisting patients to understand—in Connecticut's terms, the meaning of palliative care and "assisted living." It is a mark of how deeply imbued the connection between hospice and death is in our society that it has taken me many years to understand the extent to which the hospice benefit is really about living and not about dying.

     Planning health care around one's life is not a new idea. Families plan the birth of their children around jobs and vacations and other children. Elective surgery is planned around other life events to assure that their effects fit as well as possible with other activities. Similarly, the media are full of material about planning for one's retirement—perhaps the last period of life. Many of my friends are working diligently to assure that their retirement incomes and savings will be adequate to their needs. But yet, these people, who so carefully plan for an active retirement and for how their estates will pass to their children or other relatives, do not plan for that period when their functioning may be restricted by ill health, but during which they may still be active, in possession of their faculties, and capable of choosing among the alternatives that will affect the quality of their lives.

     It is in this area that I believe that the PAL initiative in Connecticut can be most useful. Not just at the time when it becomes mandatory for patients and families to begin planning, but earlier, when they recognize that they will have choices to make and begin to discuss them; earlier, when they begin to do what they need to do to make calm and rational choices.

     Choice requires knowledge of possibilities. The law and most systems of morality are based upon both knowledge and choice, and ignorance is not much of a defense if one fails to make a choice when one is offered. Then the choice will be made by others in the "default." People familiar with computers know about "defaults," since this is the term used to define the choice to which a computer program will "default" if the user does not make a choice of his or her own. People with illnesses that limit the time remaining to them and who have failed to learn their treatment options and make their choices use the "default"; they are subject to the choices of others. They have, in fact, thrown their autonomy away.

     Over the years, as citizens have learned more about the nature of the forces that affect their lives, they have developed an increased appetite for information and choices—in the labeling of the food they eat and the liquids they drink, in the financing of their homes, and in countless other areas. The mysteries of the end of life remain for many a frontier of ignorance and acquiescence in the choices of others. But there are signs everywhere that this frontier is being breached by better information and the determination of people to take control.

      More than any other strength that it has, PAL shows promise of preparing people for the choices they will need to make and enabling them to make these choices naturally and normally in the course of their everyday lives.

      I see the PAL program as a program that encourages people to choose life—right up until the end.

What Others are Saying About PAL and Hospice

     Medical science is rapidly expanding. Day by day puzzles of human biology are solved and new diagnostic possibilities are realized. Therapeutic options not imagined 25 years ago have become ordinary. However, applying advances in medical science can divert a physician's attention from the person with a disease to the disease as an entity of itself. Molecular biology is beginning to reveal how genes act as switches and motors that maintain normal bodily functions and how we respond to environmental elements that upset our well being. Genes control the mechanisms of cell survival and cell death. Susceptibility to disease is a function of gene structure. Each person has a unique genetic makeup and everyone of us responds to illness in a characteristic and unique manner. Infections and tumors are generate chemicals that activate cells of the immune system to attack and destroy or produce neutralizing substances. Other indigenous chemicals transmit signals that activate immune cells and brain cells. Areas of the brain that determine physical and emotional responses to our environment are linked biologically to the immune system in this way. Although it is recognized that emotional depression lowers resistance to disease, the potential therapeutic value of the relationship between the brain and the ability to combat illness is not yet realized.

     The tradition of medical care embodies compassion, empathy, kindness, and respect. These qualities have access to that biologic link that affects response to illness. At a stage of illness when medical science cannot cure with medicines or surgery, care of the person can maximize the quality of life. Hospice care understands the uniqueness of the person/disease interaction. It is an expression of the art of medicine.

Lewis L Levy, M.D.
Clinical Professor of Neurology, Yale University School of Medicine


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