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Palliative Care: What is it? How do I get it?
I know that I have been confused as to what palliative care means until my oncologist recently used it in reference to me me! I said, "Whoa, hold your horses am I dying or near the end, I have plans?" All of my life I have known it to be in reference to dying patients, keeping them comfortable and pain free. Boy was I wrong!
"The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease and treatment. Palliative care also treats emotional, social, practical, and spiritual problems that illnesses can bring up. When the person feels better in these areas, they have an improved quality of life.
Palliative care can be given at the same time as treatments meant to cure or treat the disease. Palliative care may be given when the illness is diagnosed, throughout treatment, during follow-up, and at the end of life.
https://medlineplus.gov/ency/patientinstructions/000536.htm
I am blessed to have such an excellent oncologist. Dr. Jennifer Temel is an expert in palliative care and uses it with her patients along with other doctors caring for that patient. Palliative care needs to begin at diagnosis and follow you through your illness- from hang nail to manicure. (http://www.dfhcc.harvard.edu/insider/member-detail/member/jennifer-s-temel-md/)
So with out further blathering please read what she has to say because she says it perfectly.
https://www.ascopost.com/archive/meetings/2015-palliative-care-in-oncology-symposium/jennifer-s-temel-mds-expert-perspective-palliative-care-in-2015/
(By the way, it's true- the camera does add 10 lbs on!)
My palliative care has been excellent since the very beginning. After surgery I have had every pain and discomfort tended to, medicines or suggestions given to me, explanations made as clear as they could on the day that I asked. I think of palliative care as having a new "mommy."
This is the video that Dr. Temel refers to at the end of her talk. https://www.ascopost.com/archive/meetings/2015-palliative-care-in-oncology-symposium/vicki-jackson-md-mph-on-effective-care-integration-and-the-comanagement-model/
What have your Palliative care experiences been like?
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The problem is with most local Oncologist not referring to Mayo they prefer not to offer pain and other symptom relief! Even if you are diagnosed with metastatic cancer or you are referred to a radiation oncologist for chemo or radiation, go off hospice and can’t get back on hospice til a correct PET scan done !
Lost my trust with medical professionals
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1 ReactionHi Cathy - Can you explain a little more about what you are talking about? Palliative care is different than hospice, and can be accessed before hospice, or during a hiatus such as you are describing.
Here is a pretty good definition, "Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment."
Are you looking for a return to hospice, or would palliative care suit you at this point?
Sue
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4 ReactionsPalliative Care vs Hospice Care
https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care#:~:text=Palliative%20care%20is%20specialized%20medical,to%20cure%20their%20serious%20illness.
When talking to medical professionals about your/his care, especially with palliative care, it helps to say how the care will help maintain independence. The patient is an important part of the decision making team, and their voice should he heard. The insurance company is always motivated by what will cost it the least. And staying independent means less costs for them.
What types of care might help with independence? It depends on the diagnosis, for instance, if a patient has had throat/mouth issues and is at risk for losing the ability to swallow, then ongoing speech therapy services may extend the time that swallowing is functional. Even though the goal is not to fix the problem - but therapy could help make eating independently last much longer.
Same goes for pain. If some type of exercise or PT alleviates some of the pain then the patient may be able to move more and stay healthier- less co-morbid health issues, better self-care.
Other care that may reduce health decline and maintain independence: muscle strength, balance, reducing pain to stay active, engaging in social events, maintaining skills needed for a hobby or to cook for oneself. Think like the insurance company - how will the patient’s functioning affect costs over time. Keeping you healthy and independent is much cheaper for them than long term high cost care.
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