United States began the decade of the 1970s without a single hospice.
In 1974 America's first hospice opened in New Haven beginning with
a home care program. A 44-bed, free-standing hospital1
was opened in 1980 with eight beds added in 1986. Hospice in North
American had finally materialized as a philosophical, social, and
medical phenomenon. The mission of this experiment was clear: to
develop a program that would fulfill unmet needs for the dying and
allow people to die with those basic elements of a good deathcare,
communication, continuity, control, calmness, and closure.
care, the goals of therapy are directed toward management of difficult
and painful symptoms, not only physical but psychosocial as well.
To achieve these goals requires a diverse team with unity of purpose,
including nursing, pharmacy, social work, volunteers, pastoral care,
nutrition, arts, physical therapy, and physicians. More than two
million Americans die each year90% with a clinical illness
and 80% within institutions. The magnitude of the problems for dying
patients and their families and friends is obviously enormous. Cancer
alone kills one person every minute in our country. Over the years,
the Connecticut Hospice has become a resource of care for patients
with terminal illness, a body of knowledge, the richness of caregivers'
observation, and the lessons learned from listening to more than
35,000 patients and their families. From the beginning, there has
FRANK J. BRESCIA, M.D., medical director,
Calvary Hospital, Bronx, New York; fellow of the Hospice Institute for Education, Training, and Research, Inc.; associate
professor of medicine, Emory University School of Medicine, chief
of the oncology section, Grady Memorial Hospital, Atlanta, GA. FREDRICK
FLATOW, MD., director of medicine, Connecticut Hospice, Inc., fellow
of the American College of Physicians. WILLIAM SCOTT LONG, Ph.D,
M.D., attending physician, The Connecticut Hospice, Branford. SANDRA
KLIMAS, R.N., B.S.N., M.P.H., vice president, Clinical Operations,
The Connecticut Hospice, Branford.
been a moral obligation to evaluate
how care is delivered, to learn from mistakes, and to address the
formal needs of sharing crucial information with a wide range of
disciplinesphysicians, medical students, nurses, pharmacists,
etc. through training, education and research. Motivation and expressions
of compassion do not necessarily equate with competency at the bedside.
Therefore, to invest in physician participation, documentation,
history taking, and patient assessment becomes important. How do
we measure and monitor what we do? How do we deliver care in an
environment where we know patients will die and where clinical options
for cure are limited or nonexistent?
Connecticut Hospice made the decision
in 1986 to address the needs of medical students and others (residents,
fellows, nurses, nurse practitioners, physician assistants) to have
exposure outside conventional hospital settings to help develop
communicative skills in dealing with dying patients and their families.
Elective programs for senior medical students are listed at the
Yale University School of Medicine and the University of Connecticut
School of Medicine. Two to four week sessions allow hands-on care
of patients and their families and friends dealing directly with
the patient's complaints, symptoms, fears, and expectations. The
curriculum encompasses pharmacological and other protocols for symptom
management that are commonplace with the hospice patient and family.
The faculty includes members of the interdisciplinary team.
who are dying become different and difficult because clinicians
treat them differentlymany times, with apathy and indifference.
At the other extreme there is an inability to address the frustration
of perceived failures, and the caregivers fall victims to their
own inventiveness in ordering tests, then seeking for a cure that
happen. Principals of good hospice care are no different from
those used in other medical care situations: clinical competence,
experienced technical skills, and a bedside manner are used to define
treatment in the patient's best interest.
for physicians is to recognize that point in the natural course
of a disease that initiates the dying process, ie, to determine
when the patient can no longer be effectively treated with a goal
to cure or prolong life. The inexperienced physician learns to ask
a series of specific questions as clinical options are reviewed:
- What does this patient and family understand?
- What does this patient and family want?
- What degree of futility is there?
- What and how severe are the patient's symptoms?
- What has been the tempo of progression over the last few weeks or months?
- Can I anticipate how the patient will die?
- What are our reasonable goals?
- Will I make this patient worse by whatever I do?
- What do I do if the patient and family disagree with my recommendations?
- What are the specific ways to involve the patient and family in decisions?
clearly about our goals for a specific patient is critical when
we must optimize the quality of life during the time remaining.
Good doctors need to learn the difference between what they wish
to happen for their patients and what the clinical reality dictates
likely will happen.
the students' clinical rotation (see Table 1) at Connecticut Hospice,
each one participates as a member of the hospice team in defining
the comprehensive plan for each patient and family. This allows
the student to witness what a coordinated effort among various disciplines
can accomplish in most situations. Beyond the severity of their
physical symptoms, patients often have distress that encompasses
their spiritual, emotional, and cultural lives. This bridge that
unites the humanity of the caregivers and those needing care requires
an appreciation of human existence itself.
of the issues explored with students is the care of patients at
home. This is an important part of clinical experience, because,
despite the difficulties in keeping patients at home, most patients
prefer to die there. Only 3% of relatives of patients who died at
home would have preferred the hospital setting.3 The
consistent factor that demonstrates satisfaction by hospice families
was the place of death. At Hospice patients can be admitted from
home care for control of symptoms and to develop a plan of care,
which involves teaching the family, then return home again. Some
communities do not have the resources and trained individuals to
meet the complex needs of patients with a terminal illness at home.
Even those families who want their loved ones at home may not fully
appreciate the burden of 24-hour care and may feel abandoned by
well do we attract younger physicians in this important work and
allow them to experience the satisfaction perceived in other areas
of medicine? Education and experience in care at the end of life
must begin early in the education process. As death is a part of
life, and we all hope for quality of life for as long as life lasts,
then hospice and palliative care must be a part of every physician's
practice. All of us agree that failure to provide proper care at
the end of life is no longer acceptable since it abandons ideals
that guide the profession. We must provide training now for physicians,
patients, and families of the future.
1.Accredited with commendation by the Joint Commission
on Accreditation of Health Care Organizations as a Hospital, Home
Care Agency, and Hospice. Licensed by the State of Connecticut,
Department of Health Services as a Short Term Hospital, Special
Hospice, and as a Home Care Agency. Certified by Medicare as a
Hospice, Home Care Agency, and Hospital. Accredited by the Accreditation
Council for Continuing Medical Education (ACCME).
2.Weisman A: Coping with Cancer. New York,
N.Y.: McGraw Hill; 1979.
3.Wilkes E: Dying now. Lancet 1984; 1:950-2.
Table 1.Two to Four Week Elective Rotation
A. One day general orientationThe
entire program is supervised by a full-time, credentialed
and privileged physician of the Connecticut Hospice.
- Introduction to hospice philosophy
- Introduction to interdisciplinary approach
B. Interdisciplinary team planning
- Ten Principles of hospice care
C. Individual student learning with preceptor
D. Discussion of selected readings (See Appendix 1 in Bibliography on page 798)
E. Pharmacological interventions in the hospice setting
F. Preceptor/student activitiesHospice
- Daily interdisciplinary rounds
- Weekly interdisciplinary team meetings
- Student presentation of medical and physical history of assigned cases
- The admission process
- Student participates in admissions
- Assignment to patients for bedside teaching, communication,
identification of problems and symptoms and detailed investigation and research.
- Active participation in patient care, including documentation of orders and progress notes.
G. Preceptor/student activitiesHospice home care
- Home visits with preceptor to inform student re: our hospice home care environment and care provided.
- Participation in home care interdisciplinary team conferences.
- Role of the community physician in hospice home care.