“Pain is a more terrible lord of mankind than even death itself.” –Albert Schweitzer, M.D.
Palliative care is comprehensive care for people with life-limiting illness. It is a team approach focusing on the needs of ill people and their families. Palliative care is valuable at any time during a serious illness; one doesn’t have to be dying to benefit. Patients can continue to fight their disease, while palliative care focuses on improving their quality of life.
Hospice is one form of palliative care. Like hospice, palliative care can be provided in a variety of settings including hospitals, nursing homes, and a patient’s home. Currently, in order to receive hospice care, a doctor has to certify that a patient’s life expectancy is six months or less and both patient and doctor must agree to forgo further surgery, radiation or chemotherapy directed at prolonging life. Palliative care attempts to avoid these conditions and seeks to serve people earlier in the course of illness.
Physical comfort is the first priority for palliative care, but it is not ultimate goal. Relief of pain, breathlessness, or other physical discomfort is precious in its own right. But this respite also allows people the time and energy needed to attend to deeply personal questions that serious illness imposes. “Now that I am sick and not likely to get better, what matters most?” “If I were to die suddenly, what would be left undone?”
Palliative care is distinguished among clinical specialties in acknowledging that dying is normal–part of the life of every individual, and every family. Relatives and close friends are deeply affected by their loved one’s illness and approaching death. They are often inundated with the day-to-day, moment-to-moment, practical, and difficult tasks of caregiving.
Improving the experience of living for seriously ill patients and their families is, therefore, another primary goal of palliative care. And 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 and bathing aides, pharmacists, chaplains, and physical and occupational therapists. Increasingly, teams also draw upon the skills and services of complementary therapists. Trained volunteers are critically important resources of palliative-care teams. They may help with housekeeping, perhaps cooking or running errands, or making an afternoon outing possible. The essential service volunteers provide is the gift of their time and undivided personal attention.
Dying is almost always hard, but it need not be horrible. With skillful guidance, hospice and palliative care can help people deal with the stress of advancing illness and disability and the inherent sadness of dying.
When a measure of comfort is assured, people often find valuable opportunities:
a chance to communicate their feelings to key people in their lives;
a chance to reconcile previously strained relationships;
a chance to tell treasured stories;
a chance for healing the pain of one’s past;
a chance to come to peace with one’s life-long expectations and frustrations.
These are opportunities to explore meaning and to connect to a spiritual realm, not out of a sense of desperation, but because these have become the things that matter most.
The process of life completion can enrich the quality of the ill person’s remaining days and affect the lives of family members for years to come. While the effective management of symptoms remains fundamental, palliative care strives to promote opportunities for the person and family to grow, individually and together, during this poignant and often precious time of life.
If you think you or a family member would benefit from hospice or palliative care, you are probably right! Ask your doctor or nurse to help. Even when it is not possible to add many days to life, the opportunity exists to add life to one’s days.
Reprinted with permission by Dying Well (http://www.dyingwell.org)
Ira R. Byock M.D.
