Physician Assisted Living: The PAL Partner Initiative

GERALD E. THOMSON, M.D., ROSEMARY JOHNSON HURZELER, R.N., M.P.H., H.A.,

GILBERT FRAUNHAR, M.A., AND KAYE HOWE, M.P.H.

     PROLOGUE—With all the advances in the care of patients, our many failures in the provision of end of life care have been striking. Although in some circumstances we simply may not know what the right actions would be on behalf of patients, all agree with the need for companionate attention to the comfort of those who are dying. Connecticut's Physician Assisted Living Initiative is an exemplary program, providing a means and framework for coordinated planning by all concerned in the best interest of the dying patient. For physicians, it is the opportunity to create the best possible setting to provide responsive, support and compassionate care.

Gerald E. Thomson, M.D.,
Lambert and Sonneborn Professor of Medicine
and Senior Associate Dean
Columbia University

GERALD E. THOMSON, M.D., Samuel Lambert Professor of Medicine, assistant vice president in the Faculty of Medicine, and an associate dean in the College of Physicians and Surgeons, he was elected president of the American College of Physicians (ACP) at the college's 76th annual session March 16_19 in Atlanta. He is past president of the New York Society of Nephrology, the Society of Urban Physicians, and the Association of Academic Physicians; ROSEMARY JOHNSON HURZELER, R.N., M.P.H., H.A., president and CEO of The Connecticut Hospice, Inc., and the Hospice Institute for Education, Training, and Research, Inc. Currently chairman of the Hospice Association of America and treasurer for the National Association of Home Care. Chairman of the Yale Alumni in Public Health from 1962_96. GILBERT FRAUNHAR, M.A., Connecticut Hospice volunteer since October 1980. He received a bachelors degree from Harvard College and a Masters from the University of Bridgeport. KAYE HOWE, M.P.H., formerly Dean of Student Affairs, Yale University School of Medicine, Department of Epidemiology and Public Health (deceased 3 December 1997).

Why PAL? and Why Now?

     In recent times, awareness of the sanctity of patient
choice has reached new levels of sophistication. The new initiative in Connecticut, Physician Assisted Living (PAL) will spread across the nation. In the language of Wall Street, Americans will participate in a " technical rally" through which each of us will be given the chance to reinvest in ourselves and our future well-being. PAL is a gift to all persons, whether they are well or unwell, which introduces them to the hospice concept—a care modality that will add life to their days if not days to their lives, if and when they confront irreversible illness.

Ten Principles of Hospice Care: Patient and family are regarded as the unit of care. Services are physician-directed and nurse-coordinated. Emphasis is on control of symptoms (physical, sociological, spiritual, psychological). Care is provided by an interdisciplinary team. Trained volunteers are an integral part of the team. 6.Services are available on a 24-hours a day, seven-days a week on call basis with emphasis on availability of medical and nursing skills. Family members receive bereavement follow-up. Home care and inpatient care are coordinated. Patients accepted on the basis of health needs, not on ability to pay. There are structured systems for staff support and communication. Critical Care Nurse Volume 16, no. 1, 1993 ©1974 The Connecticut Hospice

The Introduction of Physician Assisted Living (PAL)

     The principles of hospice care (see box on previous page) were introduced to this nation through a grassroots initiative early in the 1970s when the first American hospice program, The Connecticut Hospice, Inc., began caring for its first hospice home-care patient from its New Haven headquarters on Prospect Street.

     The first discussions of hospice as a concept of care began in 1967 when Dame Cicely Saunders, O.M., F.R.C.P., founder of the modern hospice movement, met with a small group of visionaries at Yale University School of Medicine. In 1974, The Connecticut Hospice initiated care for patients with cancer diagnoses, under a three-year grant from the National Cancer Institute. In 1979 Connecticut led the nation in creating the first licensure regulations for hospice care.
In the decade that followed, the hospice model of care was recognized and replicated across the country. In 1977, then Secretary of Health, Education and Welfare, Joseph A. Califano, Jr., promulgated a request for proposals for a hospice demonstration project. As a result of the information generated in that study, the federal government created the Medicare Hospice Benefit in 1983 to be part of the prospective payment system for hospitals.¹ From that time to the present, the number of Medicare-certified hospices has grown from 31 in 1984 to over 2,000 in 1996.²

     Nearly 75% of all hospice patients are age 65 or older.³ A description of the hospice population by disease category reveals that a majority of patients have diagnosed neoplasms.⁴

     Soon after its inception, The Connecticut Hospice, Inc., created the research and teaching component for hospice care in the United States, The Hospice Institute for Education, Training and Research. This Institute was incorporated in 1978 to study care of the terminally ill, and in 1995, the Institute, through its research, identified a comprehensive absence of awareness by the general public as to the existence of the hospice choice, its possible application to patients' future needs, and care barriers to effective hospice care. A similar absence of awareness was identified as well as serious gaps in knowledge and experience among health-care professionals regarding hospice care as an alternative to mainstream terminal care. As a result, the Physician Assisted Living (PAL) Partners initiative was conceived to give patients and health-care providers a means for establishing their choice of the hospice option for compassionate care in advance, so that individuals might exercise that option in a timely and productive manner.

     One of the paradoxes of the many advances in medical care today is that more people are now enduring prolonged deaths from chronic, progressive, and irreversible

diseases. If they are not aware of, or do not receive the full and appropriate care and support, they face the prospect of overwhelming physical pain, excessive financial burdens, and emotional isolation. Too often once patients learn that they have a chronic, progressive, or irreversible disease, their reaction is skewed by the demands of the disease itself, which may have degenerative cognitive components, as well as psychiatric aspects, including depression or delusional elements.

     The hospice principles have proven to be effective in addressing the special needs of these patients, yet most persons are not aware of their existence and therefore, hospice is not even considered by most patients at the end of life in the United States. PAL Partners strives to achieve the broadest dissemination of information relating to the hospice care option and the hospice principles of care, to assure the greatest possible access to, and possible choice of, hospice.

PAL Partners Goals and Objectives

     The Hospice Institute in collaboration with professionals representing medicine, law, nursing, social sciences, theology, and arts designed the PAL Partners Initiative to achieve these objectives:

* Assure that potential patients and their families are aware of their full range of health-care options when a disease is diagnosed as irreversible.

* Create greater access to hospice care by advising all potential patients of the availability of the hospice option, preferably well before they need hospice care or are experiencing serious illness.

* Afford the mechanism and opportunity for all patients to designate their preference for hospice care in writing as an advance directive.

* Educate patients and health-care providers regarding the benefits of hospice care as an early intervention for patients with advanced irreversible illness, and the appropriate clinical decision-making processes to facilitate transition to PAL Partners care giving through a hospice program.

* Encourage dialogue both at the patient and provider level around the principles of hospice care and how care might be optimized during an advanced progressive, irreversible illness.

* Inspire all physicians to continue to collaborate with patients regardless of length of life.

Advancing Patient Care Toward the Year 2000

     The emphasis of the PAL initiative is on the dialogue and conversation that should occur between physician and patient. In the current health-care environment, physicians are distanced from their patients as a consequence

of the increasing emphasis on subspecialities, the intricacies of managed care, and the specter of malpractice litigation. PAL solidifies the physician's role as part of the process of preparing for the eventuality of irreversible illness.

     The role of the physician in PAL is not only crucial, it is indispensable. The goal of PAL is to raise the level of discussion and introduce crucial questions with which the physician and patient and family must contend—preferably well in advance of the complications of serious, chronic, or irreversible illness. In the same sense that the Hippocratic tradition brings all physicians to the pledge, "first do no harm," PAL brings them to thoughtful discussion with their patients of the options available in the face of serious, life-defining illness. Physician involvement takes place not only within the hospice care modality but as part of the process of moving a patient into the hospice continuum of care. In both instances this role is one only the physician can play and a responsibility that only a physician can fulfill.

     It is well established and fully acknowledged that health care revolves around the medical management of patient care. The physician's orders determine the course of the patient's treatment, and, with the advent of managed care, physician authorization now dictates the reimbursement for patient care. The physician must not only direct care at the bedside, but must steer the care process through a maze of medical review and payment mechanisms. PAL Partners must be envisioned as an all-encompassing dimension of patient care, not bounded by revenue and reimbursement parameters, but broadly translated into a wide variety of settings, all of which have the shared goal of improving palliative treatment in the crucial weeks and months of a patient's final illness.

     It is anticipated that PAL will be integrated into medical schools, nursing and other professional colleges, and teaching hospitals, as well as the continuing education of health-care professionals.⁵ Internet access to the Physician Assisted Living website will continue the dialogue and exchange of information that PAL initiates. The educational component of the PAL initiative will enable the PAL Partners concept to realize its full potential in facilitating the physician's role in translating its 10 principles into reality for their patients who have executed a PAL directive.

The Premise of PAL

     PAL proposes 10 principles which, though immutable, are eminently flexible. They are adaptable to every community and every care system, and to the special circumstance of the providers and recipients of health care. The 10 principles upon which PAL is founded are pliant, guiding philosophies that describe what care givers should

know to address the needs of patients and families. While PAL promotes advance consideration of issues related to care of the patient with an irreversible illness, the configuration of end-of-life care can be adapted to each changing situation regardless of the time at which PAL is introduced.

The Ten Principles:

1.The patient and family are the unit of care.—The PAL initiative supports the family's participation in the care of a seriously ill patient by making provision in advance for the array of services the patient chooses to receive. The patient's election of the hospice philosophy guides the care she will receive and defines the levels of care and types of services to be provided. Inclusion of the family not only acknowledges their role as care givers but includes their care needs and mandates that those needs be addressed as part of treatment both before and after the patient's death.

2.Services are physician-directed and nurse coordinated.—The PAL Partners initiative and the physician's role in caring for the patient recognizes that the physician-patient relationship is central to patient choice and decision-making.¹ The role of the professional nurse is to utilize the nursing skills, integrating all dimensions of hospice care and the treatment of all symptoms. The physician and nurse team constitute the infrastructure on which all patient care planning is founded regardless of setting. The principles of hospice care need not be limited in their application to the confines of formalized, certified hospice programs.

3.PAL emphasizes control of symptoms—physical, sociological, spiritual, psychological.—In fulfilling the mandate of the PAL initiative, hospice care provides comprehensive management of symptoms related to advanced irreversible illness. The goal of hospice care is control of pain in all its manifestations—somatic, sociological, spiritual, and psychological. The physician's control of the pharmacological and nonpharmacological interventions is the means by which pain and symptom management is accomplished.

4.Care is provided by an interdisciplinary team of care givers.—The PAL Partners initiative facilitates the patient's election of services ranging from medical and nursing care to social work, financial counseling, chaplaincy, pharmacy, dietary consultation and services, volunteer support, and bereavement follow-up. The interdisciplinary approach to hospice care calls upon all specialties to contribute to patient well-being, supporting and guiding care at the end of life.

5.Trained volunteers are an integral part of the team.—The utilization of volunteers and the mandate that allhospice care shall include volunteer support⁶ brings the

talents, experiences, and resources of the many to patient and families in need of hospice care,⁷ supplementing the services of the professional staff.

6.Services are available 24-hours a day, seven-days a week.—PAL Partners validates the need of patients and families to have not only continuity of care but continuous, uninterrupted access to care givers with the skills as well as the knowledge of their needs.

7.Family members receive bereavement follow-up.— A PAL election assures that the preventive aspect of hospice care—bereavement care for family members after the patient's death for a minimum of one year—will be available to support them in their grief after the loss of a beloved friend or family member, enabling them to go on fully to live their lives

8.Home care and inpatient coordinated.—In electing the hospice option through PAL the patient or patient-to-be elects a full scope of services delivered in any number of inpatient or home settings. The specific way in which the precepts of hospice care are carried out is secondary to the goal of creating universal access to hospice for all who choose it.

9.Patients are accepted on the basis of their health needs, not on ability to pay.—PAL assures the patient and family that access to care will never be denied at the time when care becomes most resource-demanding and when resources are most likely to be most depleted.

10.There are structured systems for staff support and communication.—PAL acknowledges that the care of a seriously ill or terminally ill patient requires the full attention of a robust staff who can function in a well orchestrated way. Maintenance of the infrastructure for staff to develop, refine, and continually nurture their strengths as care givers as well as teachers of patients and their families is essential to the continued success of the hospice plan of care.

The Future for PAL Partners

     The hospice movement has been, in a sense, the victim of its own success. As more individuals have learned about the hospice concept and hospice care is more readily available, so too has the perception of hospice as the talisman of life's end become more commonplace. Contrary to popular perception, the specialized care of hospice is equally applicable to patients with advanced disease as it is to patients with a severely limited life expectancy. PAL, in embracing the principles of hospice care, offers hope to patients and their families.

Conclusion

     PAL must be seen as a beginning that initiates discussion not only between health-care professionals and their patients, but among care-giving professionals of all

disciplines. PAL prompts the care giving community to define what care givers should know. PAL is the educational program to prepare caregivers for difficult issues that arise in the face of irreversible illness. PAL will serve as the means that defines the characteristics of the knowledgeable provider who is prepared to serve the patient and family confronting terminal illness. It is the means by which providers and patients alike can:

Communicate on issues related to their care in the event of serious illness;
Articulate their concerns, wishes, and reservations about these issues;
Recognize the issues they need to resolve; and
Evidence their decisions in a written document that articulates care preferences.

     As we approach the millennium, the hospice movement enters a new era in its evolution embodied in the PAL Partners initiative. The import of PAL is that it establishes a set of values which all providers—in all specialties and disciplines, in comprehensive cancer centers, and community hospitals, in licensed certified hospices, and home health agencies, in intensive care and subacute care—can apply to the care of their patients by engaging their patients in considering and committing to the PAL principles. PAL opens up a frontier for care-giving in the next century that returns to the grassroots origins of hospice care. As this century approaches its close, PAL fulfills the prophecy hospice has put forth for all patients—to comfort and care always in all ways.

REFERENCES

1.PL 93-641 was enacted and codified as U.S.C. 1965.

2.Source: Health Care Financing Administration (HCFA), Health Standards and Quality Bureau (HSQB). Data as of December 1996.

3.National hospice usage by client age, gender, race, and marital status, 1994. Hospice Facts and Statistics 1996: A publication of the Hospice Association of America. 1996; p. 7.

4.Table 14: Percent of current clients receiving hospice care, by first-listed diagnosis at admission, 1994. Hospice Facts and Statistics 1997: p. 7.

5.The Hospice Institute has created an educational initiative, entitled Train the Trainer © for which it has received funding to 1) educate physicians and health care professionals of all disciplines regarding the appropriate criteria for referral of a patient and family to hospice care and 2) provide hands-on training in hospice care. The curriculum for Train the Trainer is designed to equip those who receive the training to return to their home institution or agency and train others.

6.The federal standard on which all hospice care is modeled, (42 U.S.C. Section 1965 et seq.) requires that a hospice must document and maintain a volunteer staff sufficient to provide administrative or direct patient care in an amount that, at a minimum, equals five percent of total patient care hours of all paid hospice employees and contract staff.

7.Hospice Facts and Statistics: 1996; published by the Hospice Association of America, indicate that approximately a quarter of a million patients in the United States die each year in need of a palliative care intervention.