Palliative Care Resources
|Sclero Forums Discussions on Palliative Care|
Palliative Care is an individualized, full-service care plan for people who have serious illnesses. The aim of it is to improve the patient's quality of life. You can enroll in a palliative care program without being in hospice.
Hospice is for people who are near the end of life and who are no longer pursuing a treatment or cure for their illness; basically it is to make people as comfortable as possible in their remaining days. Hospice always includes palliative care. (Also see Hospice Care)
However, people at any stage of a serious illness can enroll in a palliative care program. Palliative care is a covered benefit by Medicare. It is a wonderful resource for people with systemic scleroderma, to help improve quality of life. (Also see What is Scleroderma?)
What is Palliative Care? Palliative care (pronounced pal-lee-uh-tiv) is the medical specialty focused on improving overall quality of life for patients and families facing serious illness. Emphasis is placed on intensive communication, pain and symptom management, and coordination of care. Palliative care is provided by a team of professionals working together with the primary doctor. It is appropriate at any point in a serious illness and can be provided at the same time as treatment that is meant to cure. getpalliativecare.org.
Palliative Care. Serious illnesses can cause physical symptoms, such as pain, nausea or fatigue. You may also have psychological symptoms like depression or anxiety. The treatments for your disease may cause symptoms or side effects. Palliative care relieves symptoms without curing your disease. Hospice care, care at the end of life, always includes palliative care. But you may receive palliative care at any stage of a disease. The goal is to make you comfortable and improve your quality of life. MedlinePlus.
Palliative Care. Palliative care is the total care of patients who are not responsive to curative treatment. Patients may be treated at home, in the hospital, or in an inpatient hospice care facility. The goal of palliative care is to achieve the highest quality of life possible. StopPain.org.
Palliative Care Law: Humane Treatment and Good Medicine. Palliative care not only leads to better quality of life, but it can also help patients live longer. Among 151 patients newly diagnosed with metastatic lung cancer, those who at the start of the trial received palliative care in addition to standard cancer treatment lived nearly three months longer than those who received only cancer treatment. The palliative care group also reported less depression and a better quality of life, and they were less likely to choose aggressive (often painful and uncomfortable) end-of-life care. Huffington Post. 10-09-10.
What Palliative Care Benefits are Available? Coverage for palliative care may be available through Medicare, Medicaid, and private health insurance policies. Medicare and Medicaid do not use the term palliative, so coverage is provided by standard benefits. If you own a long-term care policy, there may be palliative care benefits provided by that policy. CaringInfo.org.
To find a hospice, go to Google Maps. Enter your city, state, and then "palliative care". Such as, "Edina, Minnesota, palliative care". It will show you a map and a list of all your nearby palliative care programs.
You can also ask your doctor, social worker, or other healthcare professionals for help locating or recommending palliative care programs.
Sclero Forums provides free online support for people who are interested in scleroderma and related illnesses. Below are some threads to forum discussions about work disability issues. This well-moderated bulletin board features daily discussions, chats, and photo galleries (including photos of scleroderma symptoms.) It is operated by the nonprofit International Scleroderma Network, makers of this SCLERO.ORG website. We invite you to join our friendly and welcoming group today!
In a Palliative Care Program, It's Wonderful. The palliative care involves visiting nurses, dietitians, occupational therapists, social workers and 24 hour on call help. The nurses help with pain control issues and prescriptions, vital sign monitoring, wound dressing, etc. The Occupational therapy has given me all kinds of tools to help me adjust to the loss of my right hand and weakness in general since all my muscles have atrophied because of weight loss. And the nurses are wonderful and basically only do what you want or need them to do and they come to you (No waiting in waiting rooms.) Sclero Forums. (Also see Judith Thompson Devlin)
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
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