Palliative Care: Quality of Life at the End of Life

Facing death is often a lonely and painful experience. When cure is no longer possible, many patients and families feel abandoned. But thanks to an old concept and a new approach of looking at the end of life, the last few years, months or days of person's living can be lived in comfort and with dignity.

Palliative care or hospice can offer and assist through these final steps at the end of life. It's not a place, but a philosophy of care.

"Oftentimes doctors and nurses focus on conquering disease and prolonging life when the patient's situation suggests that they should be assisting the individual towards working to dying well," says Walter Forman, M.D., director of the Palliative Care Project. "Palliative care and hospice aims to improve the quality of life at the end of life."

The term hospice traces back to medieval times when it referred to a resting place for weary or ill travelers. The modern term was coined by Dame Ciceley Saunders who founded the first modern hospice in 1967 in a London suburb.

Saunders, who was a British physician, introduced the idea of holistic hospice care, focusing on controlling symptoms as well as spiritual and social support -- now the hallmark of hospice care.

"Hospice is not about dying, but about living every moment fully, says Forman. "The center of today's hospice philosophy is a respect for the decisions of the patient and caregivers."

An emphasis on treating disease, instead of providing care, has altered the practice of medicine. Doctors, who often view death as failure, don't always accept the idea that death is a normal part of the life cycle and that medical care has its limitations.

In palliative care, an interdisciplinary team of doctors, nurses, social workers and spiritual counselors and bereavement coordinators work together to affirm life and regard dying as a normal process. Each plays an important role at the patients' end-of-life, whether it be relieving pain or integrating the psychological and spiritual aspects in patient care.

"Patients who have stopped responding to treatment still suffer from shortness of breath, nausea, constipation, depression and a variety of other ailments," says Forman. Palliative care focuses on the prevention and relief of suffering through management of both physical and emotional symptoms.

While doctors work in the capacity to prescribe treatments , nurses are often the primary caregiver. They are at the forefront of confronting their patients' end-of-life issues, providing patient comfort and compassionate care.

Social workers, bereavement counselors and spiritual advisers help family members put affairs in order, serve as resources for community and advocacy services, provide counseling and prepare the family and patient to say goodbye.

The UNM Health Sciences Center has taken steps to integrate end-of-life care in both the clinical and academic setting. Through a grant from the Robert Wood Johnson Foundation, PERT (Palliative Care Education, Research and Training), based at the UNM Cancer Research and Treatment Center, was established. Hospice networks were set up in seven rural communities in New Mexico including: Alamogordo, Gallup, Los Alamos, Roswell, Silver City and Taos. With the help of the Indian Health Services and Dr. Judith Kitzes, the medical director for the area, palliative care was introduced to the Zuni Pueblo.

Training for end-of-life care has also been incorporated in the medical school curricula. Students are encouraged to do rotations at the UNM Senior Health Center, participate in palliative case discussions, attend hospice meetings and participate in home visits throughout the community. Many opportunities are available with different hospice agencies. Through these avenues, health care providers learn how to communicate with dying people and their families and are trained to work on interdisciplinary teams that address medical, religious and psychosocial issues with a sensitivity to different cultures, values and beliefs.

"We want to instill in future health care providers that growing old is an important phase of life," says Forman. "By incorporating palliative care in the curricula, we can assure that future providers will have the attitude, skills and knowledge to help necessary to help them serve as a compassionate and competent health care workers."
Contact: HSC Public Affairs, 272-3322

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