Palliative Care: What is it? How do I get it?

Posted by Merry, Alumni Mentor @merpreb, Sep 3, 2019

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?

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

bentrivercarla | @bentrivercarla | Sep 3, 2019

I have released by my PAalliative team because I do not need pain medications at this time and spiritual support consistent with non non-theist belief system is not available. I am fearful of my demise and do see the teams clinical psychologist periodically to deal with that and that has been helpful

alamogal635 | @alamogal635 | Sep 3, 2019

@merpreb Thatis really an eye-opener regarding the truth about Palliative Care. I had no idea--just thought it had to do with end of life issues. Thank you for enlightening at least this person.

Merry, Alumni Mentor | @merpreb | Sep 3, 2019

@seaspray- Palliative care is all care, from t he beginning of your illness to it's end. I don't think that a doctor would normally say this. My oncologist did because she was explaining something to me that I did not understand. Also palliative care is a rather new concept in treating everyone, although it shouldn't be. And it's far from complete unless it involves all qualities of life, including spiritual or religious. I know from your posts that you have had problems with Mayo in FL getting into trials and testings. But remember that palliative care also takes care of all basic care too. it's an all encompassing care regime that is slowly improving and evolving. It's far from perfect or finished. How are your scans now? How are you feeling?