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.
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
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?
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 concepta 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,
- 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
Critical Care Nurse
Volume 16, no. 1, 1993
©1974 The Connecticut Hospice
The Introduction of Physician Assisted Living
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.
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
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
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
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.
of the paradoxes of the many advances in medical care today is that
more people are now enduring prolonged deaths from chronic, progressive,
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.
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,
PAL Partners Goals and Objectives
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
* 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
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 contendpreferably
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
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.
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
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
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 symptomsphysical,
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 manifestationssomatic,
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
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 carebereavement
care for family members after the patient's death for a minimum
of one yearwill 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
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.
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
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.
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 providersin
all specialties and disciplines, in comprehensive cancer centers,
and community hospitals, in licensed certified hospices, and home
health agencies, in intensive care and subacute carecan 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 patientsto comfort
and care always in all ways.
1.PL 93-641 was enacted and codified as U.S.C.
2.Source: Health Care Financing Administration
(HCFA), Health Standards and Quality Bureau (HSQB). Data as of
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
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.