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

Posted by Merry, Volunteer 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?

@merpreb

@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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@merpreb -To answer your questions, my scan last week was all stable! I am thrilled as this shows that the Tecentriq that I started months ago is working although many had doubts switching from 3 1/2 years of Opdivo to another immunotherapy would help. I do have a Rhuematologist appt coming up in 2 weeks to see if all my pain is from one of the "itis" family. Inflammation is my worst complaint along with extremely tight muscles. Just went through a few days of prepping for this Hurricane, which will be on our coast in a few hours. Now I can actually have a day off.
BTW, I never had problems with Mayo for trials…..they had no trials back in 2014. I went to Tampa, Florida to Moffitt for the trials that I flunked out of!
Even after my husband died at Mayo, there was no offerings of any type of service. I have to be my own advocate on everything. I only see the oncologist once every 3 months for 15 minutes. They are understaffed and have grown to so much in the 5 years I have been going there.
Hopefully I will still have power at my house tomorrow morning to take a shower….have my labs and infusion at 8:45!!

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@seaspray

@merpreb -To answer your questions, my scan last week was all stable! I am thrilled as this shows that the Tecentriq that I started months ago is working although many had doubts switching from 3 1/2 years of Opdivo to another immunotherapy would help. I do have a Rhuematologist appt coming up in 2 weeks to see if all my pain is from one of the "itis" family. Inflammation is my worst complaint along with extremely tight muscles. Just went through a few days of prepping for this Hurricane, which will be on our coast in a few hours. Now I can actually have a day off.
BTW, I never had problems with Mayo for trials…..they had no trials back in 2014. I went to Tampa, Florida to Moffitt for the trials that I flunked out of!
Even after my husband died at Mayo, there was no offerings of any type of service. I have to be my own advocate on everything. I only see the oncologist once every 3 months for 15 minutes. They are understaffed and have grown to so much in the 5 years I have been going there.
Hopefully I will still have power at my house tomorrow morning to take a shower….have my labs and infusion at 8:45!!

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@seaspray– Oh no, you were in Dorian's path? Do you have anyone down there that can check?
Hip hip hooray! Such excellent news about Tecentriq. What is your status now?
I have never tried to get into any trials as SBRT has worked beautifully for me. Also my oncologist thinks that for me, any infusions would make my quality of life pretty miserable without knowing if it will do anything. My doctors have given me 22+ years so far so I'm not arguing!
Good idea seeing rheumatologist. They have so many extra blood tests that they can do to limit the focus and see what they can find.
Let me know about your home, will you?

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@ seaspray Hope the hurricane leaves you alone. We never lost power here in Ormond Beach…..flickered a few times. Mayo does now have clinical trials at least in the triple negative breast cancer area. I also went to Moffitt for a clinical trial for the breast cancer, which I also flunked out of. They had a trial of the same drug at Mayo but it didn’t start as soon as Moffitt's did and my oncologist was afraid I wouldn’t qualify at Mayo time wise as they didn’t have a start date yet and there was a time limit on how long it could be after your chemo ended. Now that it's back in my lungs, there is another trial at Mayo that I may qualify for depending on my Foundation One and PD-L1 test results.

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@merpreb

@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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My current most important cancer is hopefully a single lesion that may be a recurrence (I find out next week) and the option being considered may be adequate. There may indeed be options my docs think I will turn down because I have done so before with quality of life at my age being the most important consideration. I am being helped by the counseling and most by participation in a support group at the Cancer Support Community. More help is always appreciated. I suspect it will need to be spiritual. I have thought of joining a zen community but am pretty sure I lack the necessary discipline. I still try to participate as I can in the rescue and rehab on protected wildlife and in being in nature. And enjoy when I can socializing with amateur cosmologists who see in nature no purpose but great beauty.

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@cwm1

@ seaspray Hope the hurricane leaves you alone. We never lost power here in Ormond Beach…..flickered a few times. Mayo does now have clinical trials at least in the triple negative breast cancer area. I also went to Moffitt for a clinical trial for the breast cancer, which I also flunked out of. They had a trial of the same drug at Mayo but it didn’t start as soon as Moffitt's did and my oncologist was afraid I wouldn’t qualify at Mayo time wise as they didn’t have a start date yet and there was a time limit on how long it could be after your chemo ended. Now that it's back in my lungs, there is another trial at Mayo that I may qualify for depending on my Foundation One and PD-L1 test results.

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@cwm1 – So far the hurricane has been uneventful…torrential rains and wind gusts but thankfully no flooding as of now, which is high tide. Yes, Mayo does have quite a few trials going on as my oncologist is leading the lung one. That is why I no longer get to see her but once every 3 months. I was offered to try for that when I showed progression back in April but I believe it was a chemo/immunotherapy combo which I do not want to do until I exhaust all other options. Had Gamma Knife radiation end of May so the brain lesions are gone. Just watching the new adrenal gland lesion and hilar node as well as a new one in my thyroid gland. I may decide to radiate those as well although my oncologist does not think I should at this time as I have no pain with them.

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@seaspray

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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Hi @seaspray, I encourage to ask your oncologist about palliative care at Mayo Clinic. It is available at all Mayo campuses. In this archived Video Q&A Dr. Maisha Robinson shares information on palliative care at Mayo Clinic in Florida and answers questions.

– Video Q&A about Palliative Care https://connect.mayoclinic.org/webinar/discussion-on-palliative-care/

Compared to surgery, radiation and chemotherapy, it is a relatively new treatment line. Sometimes it doesn't get introduced to the patient or the patient and family may not hear that it has been offered. Like many people in this discussion, clinicians and patients alike continue to equate palliative care with hospice or end of life care. It is more than that. Like @merpreb said "Palliative care is all care, from the beginning of your illness to it's end." Palliative care focuses on LIVING with xxx (cancer, heart disease, ALS or whatever condition). It's about living with reality of disease (the road) and putting the steering wheel in your hands.

I wonder how many of you in this discussion have asked about palliative care vs. being told about it. Did you inquire about palliative care?

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@colleenyoung

Hi @seaspray, I encourage to ask your oncologist about palliative care at Mayo Clinic. It is available at all Mayo campuses. In this archived Video Q&A Dr. Maisha Robinson shares information on palliative care at Mayo Clinic in Florida and answers questions.

– Video Q&A about Palliative Care https://connect.mayoclinic.org/webinar/discussion-on-palliative-care/

Compared to surgery, radiation and chemotherapy, it is a relatively new treatment line. Sometimes it doesn't get introduced to the patient or the patient and family may not hear that it has been offered. Like many people in this discussion, clinicians and patients alike continue to equate palliative care with hospice or end of life care. It is more than that. Like @merpreb said "Palliative care is all care, from the beginning of your illness to it's end." Palliative care focuses on LIVING with xxx (cancer, heart disease, ALS or whatever condition). It's about living with reality of disease (the road) and putting the steering wheel in your hands.

I wonder how many of you in this discussion have asked about palliative care vs. being told about it. Did you inquire about palliative care?

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@colleenyoung– Thank you for additional information on Palliative Care.
I have also found more info : https://www.ajmc.com/journals/evidence-based-oncology/2016/december-2016/asco-guideline-upgrade-integrates-palliative-care-in-standard-oncology-care
How do I get palliative care if it is not offered tome: https://www.webmd.com/palliative-care/how-to-find-palliative-care
The difference between palliative care and hospice:
The Difference Between Palliative Care and Hospice
Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness.

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@colleenyoung

Hi @seaspray, I encourage to ask your oncologist about palliative care at Mayo Clinic. It is available at all Mayo campuses. In this archived Video Q&A Dr. Maisha Robinson shares information on palliative care at Mayo Clinic in Florida and answers questions.

– Video Q&A about Palliative Care https://connect.mayoclinic.org/webinar/discussion-on-palliative-care/

Compared to surgery, radiation and chemotherapy, it is a relatively new treatment line. Sometimes it doesn't get introduced to the patient or the patient and family may not hear that it has been offered. Like many people in this discussion, clinicians and patients alike continue to equate palliative care with hospice or end of life care. It is more than that. Like @merpreb said "Palliative care is all care, from the beginning of your illness to it's end." Palliative care focuses on LIVING with xxx (cancer, heart disease, ALS or whatever condition). It's about living with reality of disease (the road) and putting the steering wheel in your hands.

I wonder how many of you in this discussion have asked about palliative care vs. being told about it. Did you inquire about palliative care?

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Hi @colleenyoung, Thank you for the info. I am now aware Mayo does have it but has never been discussed. I don't see a doctor for 3 months, just a nurse who might be able to point me in the right direction. My mayo has no support groups for lung cancer and I don't need drugs so not sure what else they might offer. As I had my treatment yesterday, I will ask the nurse in 3 weeks when I go back.

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@merpreb

@colleenyoung– Thank you for additional information on Palliative Care.
I have also found more info : https://www.ajmc.com/journals/evidence-based-oncology/2016/december-2016/asco-guideline-upgrade-integrates-palliative-care-in-standard-oncology-care
How do I get palliative care if it is not offered tome: https://www.webmd.com/palliative-care/how-to-find-palliative-care
The difference between palliative care and hospice:
The Difference Between Palliative Care and Hospice
Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness.

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Merry, there are a couple of older discussions on Connect regarding the difference between palliative care and hospice:
– In this discussion, @IndianaScott shares his favorite resources and explanations https://connect.mayoclinic.org/discussion/palliative-care-vs-hospice-care/?
– Palliative Care and Hospice Care https://connect.mayoclinic.org/discussion/palliative-care-and-hospice-care/

I also really like the articles on Virtual Hospice's website http://www.virtualhospice.ca
– What Is Palliative Care? http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/What+Is+Palliative+Care_/10+Myths+about+Palliative+Care.aspx
– 10 Myths about Palliative Care http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/What+Is+Palliative+Care_/What+Is+Palliative+Care_.aspx

Merry, what have you appreciated the most about the consult with your palliative care team?

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@colleenyoung

Merry, there are a couple of older discussions on Connect regarding the difference between palliative care and hospice:
– In this discussion, @IndianaScott shares his favorite resources and explanations https://connect.mayoclinic.org/discussion/palliative-care-vs-hospice-care/?
– Palliative Care and Hospice Care https://connect.mayoclinic.org/discussion/palliative-care-and-hospice-care/

I also really like the articles on Virtual Hospice's website http://www.virtualhospice.ca
– What Is Palliative Care? http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/What+Is+Palliative+Care_/10+Myths+about+Palliative+Care.aspx
– 10 Myths about Palliative Care http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/What+Is+Palliative+Care_/What+Is+Palliative+Care_.aspx

Merry, what have you appreciated the most about the consult with your palliative care team?

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@colleenyoung– Thank you for these. I must say that the palliative care is mostly from my oncologist. At MGH the oncologist is the "main" guiding force in lung cancer, even if you aren't receiving chemo, which is my case. But she does work with my surgeon and radiologist.
What I have appreciated the most is the gentle honesty of my Oncologist and they offer of other types of help, counseling, support groups, etc. MGH has an array of support groups, massages, etc that are available to cancer patients. I have yet to take advantage because I live in another state. But I will if I need it for sure. I also appreciate the fact that I am listened to and understood.

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Thank You Colleen.

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@debbmol62

Hi, I have a long list of incurable Diseases , CHF COPD, Pulmonary Hypertension a 75% Paralyzed Diaphragm ex ex and they put me on Palliative care and my question is under the CDC new Guidelines of Pain does it apply to PC ?? I am in sooo much pain that i can't do nothing for myself and i have no quality of Life 🙁 can someone please answer this for me and Thank You and i hope everyone has a Great Day.

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Hi @debbmol62 I am sorry to read of your many health issues. That must be a tough road you are on for sure.

Due to my wife's brain cancer, for years she was on palliative care, prior to her entering hospice care. I know that a portion of her palliative care was always pain-management oriented. I know in her situation they didn't want her in unnecessary pain and I would guess that is how all physicians feel.

Have you discussed pain management with your doctor?

Strength, courage, and peace

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