About Palliative Care
What is Palliative Care?
How does this approach work to maintain quality of life for those who are living with
and dying from serious illnesses?
"The goal of palliative care is to maximize quality of life for patients
living with a serious or life-threatening illness. A patient can benefit from
palliative care at any stage of chronic illness, from the time the disease is
diagnosed to its final stages. It takes an entire team, including a doctor, nurse,
pharmacist, psychologist, social worker, and chaplain, to provide palliative care.
One important aspect of care is controlling the patient's bothersome physical symptoms,
such as pain, shortness of breath, nausea, and fatigue. Careful use of medications
often achieves this goal. Another aspect is helping the patient and his or her family
plan for the future and establish goals for medical care."
Linda King, MD, University of Pittsburgh School of Medicine
Why does palliative care need to be "enhanced"?
Although caring for and comforting those who are sick and suffering is an
impulse as old as humanity, the professional approach known as Palliative Care is relatively
new. It has developed over the last 30 years in response to the changes wrought by modern
medical advances on how people experience illness, dying, and death. Before the 1900's
most people died relatively quickly from acute, infectious diseases or accidents. Now, drugs,
machines, and procedures are frequently able to keep people alive for a
long time with conditions that would have previously been rapidly fatal, such as cancer and
end-stage heart, liver, lung, kidney, and neurological diseases. As a result, most people
in the United States die from long-term chronic conditions, which involve a prolonged
period of progressive loss of function and numerous distressing symptoms. Palliative
care works to alleviate these symptoms and maintain the best possible quality of life
for people whose lives technology has extended,
and their families.
Public opinion polls, medical organizations, and research institutes have clearly
documented that large numbers of seriously ill and dying patients and their families suffer
needlessly due to gaps in the healthcare system. These problems are especially persistent
in Pennsylvania, which has one of the highest proportions of elderly in the United States.
Those who die in Pittsburgh are a great deal more likely than others across the rest of the
state and the country to experience hospitalization in the last six months of life and
are at higher risk for a hospitalization to include an admission to an intensive care unit.
While some of these hospitalizations lead to meaningful recoveries or welcome improvements in
health, all too often patients bear physical, emotional, and financial burdens of unhelpful and
unwanted medical care near the end of their lives. We urgently need new approaches to the care of
critically ill patients that promote comfort, dignity, continuity of care, communication, and
family support.
Research indicates that seriously ill patients and their families want and need what
palliative care offers: relief from symptom distress; control over what happens to them;
avoidance of prolongation of the dying process; help with the burden on family caregivers;
and the opportunity to strengthen important relationships. And yet-
Too often, terminally ill patients suffer from inadequate pain and symptom control, lack of communication about
their illness and options for treatment, [and] poor psychosocial and spiritual support...
- Studies have shown that 40 to 50% of nursing home residents in the United States live in persistent pain, and
50% of hospitalized dying people have moderate to severe pain more than half the time before they die.
- Although Gallup Polls consistently show that 80 to 90% of us would prefer to die at home, the vast
majority die in institutions, many receiving unwanted, burdensome care.
- For patients who die at home, the financial, physical, and emotional burdens of care giving fall heavily
on isolated nuclear families, and predominantly on women.
Despite recent gains, palliative and hospice care reach only a small fraction of those who could benefit from them.
Many patients and families are unaware of the possibilities for compassionate, reliable,
effective care during the stressful phases of critical illness, death, and bereavement.
Only a minority of health professionals have mastered the knowledge and skills required for excellent
end-of-life care. Physicians, especially, are trained to cure disease, and they are often uncomfortable in
the presence of patients whose diseases they cannot cure or who have decided to forgo aggressive curative treatments.
As a result, the honest, open communication between doctor and patient, so necessary for realistic planning in the face
of a grave prognosis, often fails to occur.
People with serious illnesses and their families are suffering in a world where we have the resources to prevent it.
Why? According to The Institute of Medicine and a report by the National Cancer Policy Board, for palliative care to
fulfill its promise, our society must make significant progress on three fronts:
- Research into the most effective treatments for physical, psychosocial, and spiritual suffering.
- Education of health professionals in state-of-the-art pain and symptom management, communication, and other palliative care skills.
- Community engagement and education to raise people's awareness of their options for high quality palliative care so they can demand it for themselves and their loved ones.
These are the core elements of the mission of the Institute to Enhance Palliative Care.
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