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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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I have been with Mayo in Florida for 5 years with stage iv and have never been offered palliative care....amazing.
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1 Reaction@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?
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2 Reactions@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.
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2 ReactionsI 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
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3 ReactionsMy husband was offered palliative care when he was diagnosed and that was a year ago. Unfortunately the team that does this for our insurance/doctors were very weak in explaining what that really was or what they could do. Just last week I finally got an answer and some support. The addition of palliative care is very important and helpful but the quality of the team providing it makes all the difference. I'm grateful to finally have found a social worker within the team who 'gets it' and is helping us get more support.
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3 Reactions@bentrivercarla - I can't imagine how that made you feel. I am terrified of dying too. Is counseling helping with this? Do you need more help with this? Have you been released from all treatments too? How do you feel about being released? In which manner were you released? I can I help?
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2 ReactionsHappy for you
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1 Reaction@cindylb- Hi! This is so encouraging to hear. People who "get it" make life easier to live with even if it's a downhill battle. Are there any special comments that have been made by your counselor that you might share with us that could help someone else?
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2 ReactionsIt has helped a bit because the psychologist listened and even pointed out that in many ways she agreed with me, helped me accept that I am more a fighter than a mystic (I was trying to be more a mystic HA). She also pointed out the current realities of the health care system which was accurate but not necessarily helpful. We did some exercises as part of a relatively new practice called meaning-centered therapy. We discussed my results the essence of which were I am afraid of death. I thought this was useless but my sweet husband pointed out that was just the test result - now we work on applying it. I am being helped enough to remain committed. My psychologist is at Mayo and I am finding her more than competent and would recommend her. Thanks
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4 Reactions@bentrivercarla- I love this, thank you.