Hospice and Palliative Care
While most of us do not look forward to disease, death or the dying
process, they are an inevitable part of the life span. Death and dying, in our
society, are very much verboten subjects due to personal fears, cultural taboos
and an unwillingness to confront our own mortality. Often, personal reflection and
mourning of death are done in private and personal wishes for end-stage disease
treatment are never addressed. Dr. Elisabeth Kübler-Ross stated at a hearing
before the Senate committee on aging in 1972, “that we live in a very particular
death-denying society. We isolate both the dying and the old, and it serves a
purpose. They are reminders of our own mortality.”i Death and disease are
frightening to us. Within the concept of our own existence, we become uneasy at
its thought and find ways to avoid confronting its reality. In youth, both seem
unlikely and impossible. But as we age, we become increasingly aware of life’s
realities--it is fraught with maladies and it is terminal. Dr. Atul Guwande,
Research Director at Brigham and Women’s Hospital and Professor of Surgery at
Harvard University said that as a society, “we are not good at helping people live
a good life with a terminal illness and come to key decisions that they have to
make in a smart and appropriate way-when to let go.”ii Death is not a part of our
society’s conversation. Rather, it is the proverbial elephant in the room.
In the early 1960’s, Dr. Kübler-Ross became interested in the dying
process and subsequently proposed a universal five-stage process of dealing
with death: denial, anger, bargaining, depression, and acceptance. And while still
used today as the foundation for processing loss, in 1995, Robert Kastenbaum
and Sharon Thuell felt that Kübler-Ross’ staged concept of death excluded
variation of context and experience. They proposed that the dying experience
was not universal but instead unique and personal. That same year, they
published a paper, “Cookies baking, coffee brewing: Toward a contextual theory
of dying” that brought readers face-to-face with the death experience. They
offered a broader, more holistic approach to care of the dying. This opened the
discussion for families and health-care professionals about protecting the quality
of life and providing better care as well as preparing caregivers to deal with endof-life issues.iii This idea helped bring about a more wide-ranged, general
acceptance of hospice care.
Hospice is derived from the Latin word hospitium, which means
“guesthouse”-a place where the weary and sick travelers returning from a
religious pilgrimage could find comfort and rest.iv Today, hospice is not a place
but rather a philosophy of allowing humane and compassionate care, freedom
from pain, and grace and dignity in dying. The term hospice was first used for a
British facility founded by Dr. Cicely Saunders in 1967—St. Christopher’s
Hospice. This facility operated on the concept that: clients and families were
viewed as units, clients should be kept as free from pain and fear as possible,
emotional and social impoverishment should be kept at a minimum, client
competency should be maintained and that the resolution of conflict and the
realization of realistic desires should be assisted.v Currently, hospices, both
inpatient and outpatient, focus on giving the terminally ill an improved quality of
life. The emphasis is on prolonging living rather than prolonging dying.vi Hospice
aids a patient in acquiring some control over a largely out-of-control situation by
focusing on caring rather than curing. This holistic approach augments medical
treatment to afford a dignified means of coming to terms with death, for both the
patient and the family. While the patient and a family member acting as the
primary caregiver make the health decisions, they are informed and supported by
a hospice team. The team frequently includes the patient’s primary care
physician as well as a hospice physician. The team is supplemented with
hospice nurses, social workers, clergy, and speech, physical and occupational
therapists as needed. Hospice care is usually given in a home setting in order to
better facilitate its goals which include: assisting the patient and the family with
emotional, psychosocial, and spiritual concerns with death; pain and symptom
management; and coaching for family care-giving and respite in times of
excessive stress. This is coupled with managing the administration of
pharmaceuticals, as well as palliative care.
With the advancement of technology, has come the ability to both prolong
the dying process and inflict harm on the healing process.vii Extraordinary
treatments, while effective and available, can often impair and create life-limiting
scenarios and though quantity of life is preserved, quality of life is often
sacrificed. Palliative care came into use with the hospice concept in the 1960’s.
And what was originally a component hospice care, it has emerged as its own
entity. Palliative care, while still used in conjunction with hospice care, is no
longer synonymous with end-of-life care. It has evolved into an adjunct to
curative care of serious disease and illness. The name, derived from the Latin
palliare-to cloak, represents the care’s focus on pain and symptom “cloaking” or
management. This specialized care is directed at improving the overall quality of
life, either during disease treatment or the dying process, and it used with
success in both scenarios.viii Palliative care has proven to be powerful therapy for
serious illness that includes: cancer, congestive heart failure, COPD, kidney
failure, Alzheimer’s, HIV/AIDS and arteriolateral sclerosis (ALS). The care is
made up of pain relief, as well as relief from fatigue, nausea, constipation and
loss of appetite, breathing treatments, assistance with sleep difficulties. Like
hospice care, palliative care employs the team approach. In addition to medical
workers, massage therapists, nutritionists and other specialists, can be included
in the team. As a direct result of the use of palliative care, symptom burden is
reduced. Strength improved, as is mood and curative treatment tolerance.
Additionally, the need for acute care during treatment declines.ix An August 19,
2010 report in the NEJM cites a study funded by the American Society of Clinical
Oncology Career Development Award and philanthropic gifts that determined
that palliative care in metastatic lung cancer patients resulted in less aggressive
medical treatments in addition to longer survival times.x
Despite these positive outcomes, palliative care is underused in our
current medical setting. This is partially due to outdated and narrow perceptions
of palliative care being used solely for end-of-life care and lop-sided medical fee
reimbursement schedules. Often, it is more financially beneficial for a physician
to treat with traditional methods than to treat with the palliative adjunct. Even
though palliative care is overall more cost effective, some doctors are reluctant to
use it because reimbursement for consultation and referral is far less than for
surgery or treatment.xi
As our nation ages, the need for open dialogue about disease treatment,
death and dying process will increase. Technology will continue to evolve as will
the ability to keep a person alive. We, as a society, need to recognize that those
additional days, weeks, and months of extended life will mean very little if dignity
and quality of life are sacrificed. The need for palliative and hospice care will
never become outdated. It will, instead, become an accepted and welcomed way
to allow disease treatment and death to occur with dignity and respect—a way to
remember the humanness of our condition. Perhaps Dr. Cicely Saunders’ words
best humanize our death. “You matter because of who you are. You matter to
the last moment of your life, and we will do all we can, not only to help you die
peacefully, but also to live until you die.”
This paper fulfilled course objectives number six and nine by allowing
me to make connections between the materials provided in this class
and real world applications. I was able to then relate that information
to things that I, and my family, have experienced. Additionally, course
objective five was met by allowing me to recognize the patterns of
change and growth through the lifespan, drawing on empirical research
findings and case study information.
NHPCO-National Hospice and Palliative Care Organization. http://www.nhpco.org
New Studies in Palliative Care. NPR, The Diane Rehm Show.
http://wwwthedianerehmshow.org/show/1010-08-24/new-studies-palliative-care
iii Human Development--A Life Span View 4th Edition. Kail, Robert V., Cavanaugh,
John C.
iv HFA--Hospice Foundation of America-End-of-life resources for professional,
patients and families. http://www.hospicefoundation.org
v Ibid i.
vi Ibid iii.
i
ii
Ibid ii
What Is Palliative Care? getpalliativecare.org.
http://www.getpalliatibecare.org/whatis
ix Ibid viii
x Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer.
Temel, Jennifer S., MD, Greer, Joseph S. PHD, et al. New England Journal of Medicine
August 19, 2010. http://www.nejm.org/doi/pdf/10.1056/NEJMoa1000678
xi Ibid ii
vii
viii