4. PALLIATIVE CARE
We must all die. But that I can save him from days of torture, that is what I feel as my great and ever new privilege. Pain is a more terrible lord of mankind than even death itself. - Albert Schweitzer, 1931
(A) What is
Palliative Care?
(B) Guidelines for Transition from Curative
to Comfort Care
(C) Landmarks and Tasks, from
Dying Well
(A) What is Palliative Care?
Palliative care is the
comprehensive management of patients' 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 means taking care of the whole person -- body, mind,
spirit -- heart and soul. It looks at dying as something natural and personal.
The goal of palliative care is that you have the best quality of life you can
have during this time.
The following Precepts of Palliative Care, developed by
the Last Acts Palliative Care Task Force, affirm a vision of better care at the
end of life:
-Respecting patient goals, preferences and choices -Comprehensive
caring
-Utilizing the strengths of interdisciplinary resources -Acknowledging
and addressing caregiver concerns -Building systems and mechanisms of support
Palliative care affirms life and regards dying as a natural process that is a profoundly personal experience for the individual and family. Palliative care neither hastens nor postpones death, but rather seeks to relieve suffering, control symptoms and restore functional capacity while remaining sensitive to personal, cultural and religious values, beliefs and practices. One need not be dying to benefit from palliative care. It is valuable at any time during a serious illness. Hospice is one form of palliative care. And like hospice, palliative care can be provided in a variety of settings including the hospital, the nursing home and the patient's own home.
The intensity and range of palliative interventions may change as an illness progresses and the complexity of care increases. Eventually, the focus shifts to the process of dying, with emphasis on end-of-life decision making and achieving a death that is consistent with the values and expressed desires of the patient. Palliative care guides patients and families as they journey through the changing goals of care and helps the patient who wishes to address issues of life completion and closure. 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 a family's experience of terminal illness and a loved one's passing does not end at the moment of death, palliative care extends support for the family in their grief.
A typical hospice or palliative care team may include one or more doctors, nurses, social workers, home health aides, pharmacists, chaplains, and physical and occupational therapists. Increasingly, teams also call upon the skills and services of complementary therapists. Trained volunteers are critically important resources of palliative care teams. This definition of Palliative Care was reproduced from the Center to Advance Palliative Care website: www.capcmssm.org
(B) Guidelines for
Transition from Curative to Comfort
Care
When faced with a life
threatening illness, the decision to move from curative care to comfort or
supportive care is always challenging. It can be agonizing for some, it may be a
relief for others, but it will be stressful for those involved. The patient, the
family, the physician and the entire healthcare team will be involved, to some
degree, in making this decision. These guidelines create an environment for
comfort, dignity, healthy grieving and life closure based on patient and family
wishes. The goal is to foster compassion and caring while relieving physical
symptoms and addressing the psychological, social, emotional, and spiritual
needs of the patient and family. This is a difficult and stressful time. Each
person's needs are unique. What you can expect You will receive any needed pain
medication by mostly by mouth, but occasioally internally. Long-acting drugs
given on a regular schedule with another backup medication work best to keep you
as pain-free as possible. You will receive only medications and tests necessary
to treat your symptoms. Be sure to discuss all your symptoms with your
healthcare team. They cannot help you manage your symptoms without your input.
You can expect to have your questions about your treatments and illness
answered. You may eat what you want, unless your doctor requests a special diet.
It is not uncommon for people to have a decreased appetite or to stop eating as
their illness progresses. If you currently have tube feeding, IVs or TPN, you
and your doctor need to discuss if there is a benefit from continuing them.
Visits from a chaplain and social worker will assist you and your family with
spiritual and emotional concerns. This may include prayer, coping, grief and
sadness. A referral for counseling services may be made. You may want to
consider other comfort measures like massage or therapeutic touch. You should
continue to interact with family pets if so desired.
(C) Landmarks and Tasks, from Dying Well
Complete text of Dr. Ira Byock's Working Set of Landmarks and Developmental Taskwork can be found at: www.dyingwell.org
Dr. Byock writes: Although symptom management is
the first priority for palliative care, it is not the ultimate goal. Truly
person and family-centered care strives not only to ensure comfort, but also to
improve quality of life and preserve opportunities for people who are dying and
for their families to grow through times of illness, caregiving and grief. On
his website, he provides a table listing personal challenges dying people are
faced with and the tasks they must undertake to put their lives in order, to
continue to grow, even in the shadow of death. Parts of Dr. Byock's table are
detailed below:A working set of Developmental Landmarks and Taskwork for the End
of Life -Sense of completion with worldly affairs -Transfer of fiscal, legal and
formal social responsibilities -Sense of completion in relationships with
community -Closure of multiple social relationships (employment, commerce,
organizational,congregational) Sense of meaning about ones' individual life Life
review The telling of "one's stories" Transmission of knowledge and
wisdom Experienced love of self Self-acknowledgment and Self-forgiveness
Experienced love of others Acceptance of worthiness Sense of completion in
relationships with family and friends Reconciliation, fullness of communication
and closure in each of one's important relationships. Acceptance of the finality
of life -of one's existence as an individual Acknowledgment of the totality of
personal loss represented by one's dying and experience of personal pain of
existential loss Sense of meaning about life in general Achieving a sense of awe
Recognition of a transcendent realm Developing/achieving a sense of comfort with
chaos