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Published: Synapse 2011, Vol. 2
The loss of quality of life is often one of the most difficult issues faced by individuals and families dealing with a serious illness or chronic medical disorder. But, over the last decade or so, the medical community has increased its focus on the importance of maintaining and enhancing quality of life during illness and treatment.
Palliative care, a relatively new discipline in the field of healthcare, is a recognized medical specialty that uses a team approach to help patients with debilitating chronic conditions live life as comfortably - and as fully - as possible each and every day.
Joan Snyder's mother, Wini Vorbach, never wanted to be a burden on anyone. Even when her health was failing, she never complained. Neighborhood Health worked closely with Wini and Joan to make sure her needs were met without her having to ask for help.
There is often confusion between the terminology "palliative" and "hospice" care. Although both provide care that emphasizes patient goals, relief of pain and suffering, and quality of life, there is a difference. Unlike traditional hospice programs, in which trained caregivers help alleviate pain and provide physical, emotional and spiritual support at the very end of life, palliative care is not dependent upon prognosis and can be offered in conjunction with curative and other life-sustaining medical treatments. Palliative care may be offered as part of a hospice program, but it is not limited to hospice or end of life care.
The approach of palliative care is designed to help patients and their families manage the disabling effects of chronic disease regardless of the patient's life expectancy or plan of care. Palliative care is not about treating or curing disease; it is about helping patients and families better cope with the challenges of a disease and/or the side effects of treatment. And it is available from the point of initial diagnosis.
"Very often, people think of palliative care as pre-hospice. But, in reality, the goal of palliative care is really to relieve suffering and support the best quality of life for patients and families no matter what their disease or stage of illness," says Heidi Owen, Neighborhood Health's Director of Hospice Services. "It may not be a life-limiting illness, but it may be an activity-limiting illness. Many patients who receive palliative care aren't expected to die any time soon."
Neighborhood Health, a subsidiary of The Chester County Hospital and Health System, has been offering home care and hospice services for 100 years. Always at the forefront of care, the West Chester-based organization was one of the first providers in the region to offer palliative care services in the home environment. Today, palliative care plays an integral part in both the hospice and home care programs.
"Palliative care takes the traditional home care and hospice medical models and adds other supports to them," explains Andrea L. Devoti, President and CEO, Neighborhood Health. "Over the years, we have identified that there are times when people in our community need palliative care and may not realize it's available to them. We want everyone to know that these services are offered locally right here."
Debbie Travers, RN, a homecare nurse with Neighborhood Health explains the details of care to one of her new patients in the palliative care program.
The Neighborhood Palliative Care Program brings together a diverse, multidisciplinary team of professionals who look beyond the strictly medical and physical issues involved with fighting disease to find ways to address a patient's quality of life issues. The highly skilled team includes nurses, physical and occupational therapists, social workers and clergy. Each patient's doctor is also part of the care team, as is the patient and their family.
"Our nurses are in constant dialogue with our patients' doctors. We keep each other abreast of where we are going, the challenges to care, and how we can progress in making sure that the patient continues to be comfortable," said Pat Bush, Director of Home Care Services. "We make sure doctors, nurses, the patient and their loved ones are always 'on the same page' and working together toward the same goals."
"The patient is always involved in the planning of care, as is the family," Bush continues. "Our physical and occupational therapists work very closely with the family on things like home modifications that will help make the patient's quality of life better."
Once mobilized, the palliative care team works together to identify a patient's sources of discomfort and/or pain, which may involve problems with breathing, fatigue, insomnia, depression, or bowel or bladder issues. The team then determines the best plan of care to offer relief. For the patient, that might include medication, massage therapy, relaxation techniques, counseling, or other options. For the family, it may mean education, training, spiritual support, or respite services.
"Just as the medical community has become more aware of the importance of a 'whole person' approach to meeting patient needs, the public is becoming savvier and more in control of their medical care," says Devoti. "As a patient, you have the right to care that is focused on improving your ability to function and to enjoy quality of life."
If you believe that you or a loved one would benefit from palliative care, talk to your doctor. A physician referral is necessary. Also check with your insurance provider. Private insurance coverage varies, depending upon the company, policy, and specific services required. Although Medicare and Medicaid do not include a specific palliative care benefit, many treatments and medications are covered through standard benefits.
For more information about palliative care, call Neighborhood Health at 610.696.6511. A customer service team is available to answer your questions. You may also want to visit www.neighborhoodhealthandhospice.org to learn more about the many programs and services provided by Neighborhood Health.
By Beth Eburn
Photos by Rick Davis
Last Updated: 11/28/2011