NEWSLETTER |
Issue #13: Palliative
Care
Contents:
1. A Different Kind of Healthcare
2. What Is Palliative Care?
3. The Healthcare System Has Embraced Palliative Care
4. Where is Palliative Care Practiced?
5. How Can I Learn About Palliative Care?
6. What Can I Do to Advance the Practice of Palliative Care in My
Community?
7. A Model Steering Committee
1. A DIFFERENT KIND OF HEALTHCARE
Surveys show that we want to die at home, free of pain, surrounded by the people
we love. But the vast majority of us die in the hospital, alone, and experiencing
unnecessary pain and other discomforts. While health professionals and medical
technology now allow terminal patients to live longer, for many that means living
with pain. Improvements in treatment of pain and other symptoms and a growing
understanding of the role of palliative care, or "comfort care," is changing that.
A rising chorus of patients, their families, and health care professionals say
the time has come to change how we die in America.
While conventional medical treatment focuses on finding a cure, palliative care
focuses on maintaining quality of life. Studies from the World Health Organization
show that 4.5 million patients from developing and industrialized countries die
each year in uncontrolled pain and other discomforts. Palliative care seeks to
address this concern as well as the social, spiritual and emotional burdens of
patients. This newsletter features much more information about this new approach
to care at the end of life.
2. WHAT IS PALLIATIVE CARE?
Palliative care is the comprehensive management of a patientÕs physical, psychological,
social, spiritual and existential needs. It can be part of the treatment of any
person with a serious or life-threatening medical condition for which a patient-centered
approach, pain and symptom control, family involvement and compassionate care
are needed. Palliative care affirms life and regards dying as a natural process
that is a profoundly personal experience for the individual and the family. Palliative
care neither hastens nor postpones death, but rather seeks to relieve suffering
and provide comfort, control symptoms and restore functional capacity while remaining
sensitive to personal, cultural and religious values, beliefs and practices.
Palliative care is distinguished among clinical specialties in acknowledging that
dying is a normal part of the life of every individual and every family. Because
the familyÕs experience of terminal illness does not end at the moment of death,
palliative care extends support to the family in their grief.
3. THE HEALTHCARE SYSTEM HAS EMBRACED PALLIATIVE CARE
Because the medical profession has focused for so long on prolonging life, the
transition to helping patients adjust to their end of life has not been a rapid
one; however, the medical community is working to address this problem. A 1997
report published by the Institute of Medicine entitled Approaching Death, identified
serious deficiencies in palliative care in the United States and called for the
need to improve care of patients at the end of life. The study released seven
recommendations, among them that medical training programs educate practitioners
in the care of dying patients. One year later, a review of the 50 top-selling
medical textbooks from a variety of specialties found that 24.1% of textbooks
contained some mention of direction on end-of-life care, 19.1% provided minimal
coverage of end-of-life care and 56.9% provided no direction in end-of-life care.
While no specialization exists in palliative care, medical students can participate
in curricular electives that incorporate didactic and experiential learning in
end-of-life care.
A 1998 American Hospital Association survey found that 15% of 719 responding hospitals
have an organized end-of-life service providing care and/or consultative services
to dying patients and their families and 27% have a hospital-wide, formalized
program that includes staff education for the management of acute and chronic
pain.
To help encourage the practice of palliative care, The Robert Wood Johnson Foundation
has created The Center to Advance Palliative Care (CAPC) as a resource to hospitals
and health systems interested in developing palliative care programs. The Center
to Advance Palliative Care will help assist hospitals with the planning, development
and implementation of hospital and health-system based palliative care programs
and will also promote palliative care educational opportunities for physicians,
nurses and hospital executives. Additionally, CAPC will encourage the development
of new mechanisms for financing palliative care services. Shortly, you will be
able to find information about The Center to Advance Palliative Care online at:
http://www.capcmssm.org/
The site is currently under construction but please make sure to stop by in a
few months and see all they have to offer!
Medical professionals interested in learning more about palliative care can also
check out these informative web sites:
http://www.aahpm.org
http://www.hpna.org
4. WHERE IS PALLIATIVE CARE PRACTICED?
The practice of easing pain and discomfort Ð physical, emotional, social, and
spiritual Ðand making life better for the dying and their loved ones has been
in practice for years within hospices across the country. Actually, hospice care
and palliative care share the same core values and philosophies Ð both seek neither
to prolong life nor to hasten death, but to enhance the quality of remaining life.
Palliative care extends the principles of hospice care to a broader population
that could benefit from receiving this type of care earlier in their terminal
illness. To better serve individuals with advanced or terminal illness and their
families, many hospice programs encourage access to care earlier in the illness
or disease process. Health care professionals who specialize in hospice and palliative
care work closely with staff and volunteers to address all of the symptoms of
illness, with the aim of promoting comfort and dignity.
Considered to be the model for quality, compassionate care at the end of life,
hospice care involves a team-oriented approach of expert medical care, pain management,
and emotional and spiritual support expressly tailored to the patientÕs wishes.
Emotional and spiritual support also is extended to the family and loved ones.
Hospice care is grounded on the philosophy of enabling patients to carry on a
pain-free, alert life, and to manage other symptoms so that their last phase of
life may be spent with dignity and quality. The focus is on caring, not curing.
In most cases, the patient and family can stay together in the comfort of their
home, but hospice care is also provided in freestanding hospice facilities, hospitals,
and nursing homes and other long term care facilities.
Most often, the basic premise of hospice care is that a family member or responsible
caregiver provides the primary care to the terminally ill individual, while members
of the hospice staff make regular visits. Hospice staff includes physicians, nurses,
home health aides, social workers, trained volunteers, clergy and other counselors.
Members of the hospice staff are on-call 24 hours a day, seven days a week to
give support and care when needed. Medicare, private health insurance, and Medicaid
in 43 states cover hospice care for patients who meet certain criteria Ð usually,
patients must be terminally ill with a prognosis of 6 months or less and must
have ceased receiving curative treatment. However, this is not the case with all
hospices.
The National Hospice and Palliative Care Organization (NHPCO), one of our Outreach
Associates, represents hospice and palliative care programs and professionals
throughout the United States. NHPCO is committed to improving end-of-life care
and expanding access to hospice care so that they may profoundly enhance the quality
of life for people who are dying and their loved ones. NHPCO is an excellent resource
for information on hospice care in this country. Please visit them online at:
http://www.nhpco.org
You can also learn about hospice care by visiting the web sites of these other
On Our Own Terms Outreach Associates:
http://www.hospicefoundation.org
http://www.hospice-america.org
5. HOW CAN I LEARN ABOUT PALLIATIVE CARE?
Perhaps you had never heard of palliative care before today or before you became
involved in this outreach effort. Or, maybe you had heard the term palliative
care, but didnÕt know what it meant. There are many excellent resources for learning
about palliative care, and one of the most comprehensive sources is Last Acts.
Last Acts, one of our Outreach Associates, is a national campaign to improve end-of-life
care and communicate the many issues surrounding palliative care. Last Acts is
comprised of 496 state , local and national Partners. It is broken down into six
Task Forces and five Resource Committees that address specific areas of end of
life; for instance, the Last ActsÕ Palliative Care Task Force focuses on education
about palliative care. This Task Force created the Precepts of Palliative Care
which provide common ground for the discussion of palliative care for healthcare
professionals. The Palliative Care Task Force, in collaboration with Last ActsÕ
Family Task Force, created the lay version of the precepts Ð the vision of better
care at the end of life. These Precepts have been endorsed by 123 organizations.
Read the Precepts of Palliative Care online at:
http://www.lastacts.org/scripts/la_eln01.exe?
FNC=SeeFeature2__Ala_eln_features_html___641
And, log on to the Last Acts web site to learn more about this tremendous coalition
and all they have to offer. Last Acts also provides an extensive listing of other
palliative care web sites. You can locate Last Acts on the web at:
http://www.lastacts.org/
Some other helpful sites for information on palliative care for consumers are:
http://www.healthatoz.com
http://www.growthhouse.org
6. WHAT CAN I DO TO ADVANCE THE PRACTICE OF PALLIATIVE CARE
IN MY COMMUNITY?
There are many things that you can do to help call attention to the need for palliative
care in your own community. Work with your local hospital system to establish
a Palliative Care Hotline for Physicians. This hotline would be staffed 24-hours
a day by physicians who are board-certified in hospice and palliative care medicine
and would provide advice to medical professionals who call with questions on alleviating
suffering for their patients. Read more about establishing a hotline such as this
in the leadership guide. You can find this section online at:
http://www.pbs.org/wnet/onourownterms/
out/leader_guide/taking4_8.html
You may also want to help coordinate training for healthcare providers who regularly
care for seriously ill patients. Many of these professionals are eager for more
information on providing care at the end of life. Work to build end-of-life curricula
into existing continuing education schedules and solicit a local healthcare institution
to sponsor the training. Get more ideas for providing training in end-of-life
care from the leadership guide. Read about it online at:
http://www.pbs.org/wnet/onourownterms/
out/leader_guide/taking4_10.html
7. A MODEL STEERING COMMITTEE
We wanted to share with you what the Indianapolis steering committee was able
to accomplish with regards to palliative care. Methodist Hospital, located in
Indianapolis, used the energy the steering committee created around end-of-life
issues to go after a large grant from a local private foundation, and the hospital
has just opened their first inpatient hospice unit (12 bed). Methodist Hospital
already had home-based hospice and the steering committee worked with them to
help them see that the time was right to take the next step. We applaud the efforts
of the Indianapolis steering committee on helping to further palliative care within
their own community.
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