1. < Cancer: Managing Symptoms

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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 1, 2022
In reply to @jimthomasintl "Palliative care is the hidden gem of medical care. It was August 20, 2021, I had..." + (show)
@jimthomasintl

Palliative care is the hidden gem of medical care. It was August 20, 2021, I had just gotten an emergency trache at St Mary's in Rochester, my chemo was bringing me down and my immunotherapy was no longer effective. A Mayo pall care doctor visited me in the hospital and gave me the boost I needed to consider pall care. The next month my oncologist told me I had < 1 year and was headed towards hospice. The pall care team took me under their wing while i tried a new immunotherapy and got off chemo. Pall care got my head straight, got me the right head meds and I got out of the ditch.

What's even better is that the Pall care team stayed with me through today. They are always there when I need them and are proactive to make sure i don't fall back into the ditch one year later. It's been the holy grail of cancer care for me. No cancer patent left behind!

Several on my colleagues at Gilda's Club https://www.gildasclubtwincities.org/ , feel the same way at their Pall care providers in the Twin Cities. Most people think its the first stop on the way to hospice-it's not.

Give it a shot!

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I want to pull out this phrase, Jim. "Most people think it (palliative care) is the first stop on the way to hospice-it's not."

Well said! When you were first told about palliative care, did you confuse it with hospice care and get worried, or did you already know about palliative care?

REPLY
1 reply
baeph | @baeph | Oct 2, 2022

This info is so important. We have been offered palliative care. We actually haven’t understood what they do and unfortunately it’s not well defined by the doctors. I will dive deeper to see how we can take better advantage of what they offer for my husband’s recovery from pancreatic cancer. Thank you for this info.

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2 replies
alive | @alive | Oct 2, 2022
In reply to @merpreb "@cindylb- I also found the lack of emotional support very disappointing. But my husband askekd me,..." + (show)
@merpreb

@cindylb- I also found the lack of emotional support very disappointing. But my husband askekd me, do you want a friend or surgeon? What a good point! Surgeons and radiologists seem to be very straightforward, dealing with precision and numbers. I do remind my radiologist, who I adore, that I am a person and he has to look at that too. He always says "Numbers don't lie" or some such nonsense. I tend to make my doctors my friends, at least my lung team.
Your husband is very lucky to have a wife as willing to help and compromise during this difficult journey. It's so important to know what kind of a person you are helping too- I take care of things immediately too, but I tend to trip over my other emotional self.
However having stage 4 lung cancer myself I also want a good quality of life. I am petrified myself of accepting my own death. I'm also thinking about looking into counseling about this through my oncologist's office.
I love, love, love the expression, "noise of married life and life itself!" I'm going to steal this term!
I am so glad that you have spoken freely as you an here. I hope that others will see the value of searching out such a person. Has your husband benefited from the counseling too?

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Thank you for sharing your experiences with palliative care! I was diagnosed with acute myeloid leukemia 6,5 years ago. I had a lot of chemo, stem cell transplant and was in and out of the hospital for a very long time. I wish I knew about palliative care at that time - I would have really benefited from it.

We had a social worker on our floor when I had my transplant, but I felt like I could have used a lot more support at that time. My hematologist oncologists were totally focusing on “fixing” me and they did. I was also focusing on surviving and beating my cancer. All other aspects of recovery were largely unaddressed. I have a strong faith in God, so prayer and meditation helped greatly. Hoping not to need it in the near future, but I am prepared to utilize it next time.

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1 reply
jimthomasintl | @jimthomasintl | Oct 2, 2022
In reply to @colleenyoung "I want to pull out this phrase, Jim. "Most people think it (palliative care) is the..." + (show)
@colleenyoung

I want to pull out this phrase, Jim. "Most people think it (palliative care) is the first stop on the way to hospice-it's not."

Well said! When you were first told about palliative care, did you confuse it with hospice care and get worried, or did you already know about palliative care?

Jump to this post

I confused it with hospice care. I had someone in one of my support group endorse palliative care, but her spouse then went to hospice. I looked at it as part of a progression towards death.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 2, 2022
In reply to @baeph "This info is so important. We have been offered palliative care. We actually haven’t understood what..." + (show)
@baeph

This info is so important. We have been offered palliative care. We actually haven’t understood what they do and unfortunately it’s not well defined by the doctors. I will dive deeper to see how we can take better advantage of what they offer for my husband’s recovery from pancreatic cancer. Thank you for this info.

Jump to this post

@baeph, my understanding of palliative cancer, especially for cancer, can be defined as comfort care or helping to manage the side effects of cancer and its treatments for the patient and their family and supporters. Palliative care concentrates of managing symptoms, like pain, depression, nausea, mobility, etc. - anything that affects quality of life. Palliative care is meant to enhance a person's current care by focusing on quality of life for them and their family.

Current care can include patients for whom their cancer is expected to go into remission or is metastatic and everything in between.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 3, 2022
In reply to @baeph "This info is so important. We have been offered palliative care. We actually haven’t understood what..." + (show)
@baeph

This info is so important. We have been offered palliative care. We actually haven’t understood what they do and unfortunately it’s not well defined by the doctors. I will dive deeper to see how we can take better advantage of what they offer for my husband’s recovery from pancreatic cancer. Thank you for this info.

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Hello @baeph Here is some information from Mayo Clinic's website that gives a good description of palliative care.

--Palliative care
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
How is your husband feeling now? What concerns do you have regarding his treatment?

REPLY
Merry, Alumni Mentor | @merpreb | Oct 3, 2022
In reply to @alive "Thank you for sharing your experiences with palliative care! I was diagnosed with acute myeloid leukemia..." + (show)
@alive

Thank you for sharing your experiences with palliative care! I was diagnosed with acute myeloid leukemia 6,5 years ago. I had a lot of chemo, stem cell transplant and was in and out of the hospital for a very long time. I wish I knew about palliative care at that time - I would have really benefited from it.

We had a social worker on our floor when I had my transplant, but I felt like I could have used a lot more support at that time. My hematologist oncologists were totally focusing on “fixing” me and they did. I was also focusing on surviving and beating my cancer. All other aspects of recovery were largely unaddressed. I have a strong faith in God, so prayer and meditation helped greatly. Hoping not to need it in the near future, but I am prepared to utilize it next time.

Jump to this post

@alive, Oh, I'm so glad that you found out about Palliative Care. You've had a pretty rough road and I love your sign-in name that celebrates it. Palliative care works very well if and when you need it, but sometimes you have to ask for it. And it also depends on the person helping you the most whether you get the support you want or need.

I think that in this day we all have to look into ourselves for most of the comfort, as you did turning to your faith. Part of the healing process has us doing this, looking to ourselves for strength that we didn't know we had.

Stay well and use your strength if you ever need it for this again! You've done so well!

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carsoncreek | @carsoncreek | Oct 25, 2022

I was recently diagnosed with Pulmonary Sarcoidosis. And, I also have a twisted aorta that is somewhat calcified. I have 100% confidence in Mayo, MN, and love everyone there. Next week, I see a Pulmonary Physician and Cardiovascular Doctor. Along, with more testing. I may be interested in Palliative Care at some point. I am curious about whether I can get it down here in Southeast Iowa. How can I find out more about it?

REPLY
2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 26, 2022
In reply to @carsoncreek "I was recently diagnosed with Pulmonary Sarcoidosis. And, I also have a twisted aorta that is..." + (show)
@carsoncreek

I was recently diagnosed with Pulmonary Sarcoidosis. And, I also have a twisted aorta that is somewhat calcified. I have 100% confidence in Mayo, MN, and love everyone there. Next week, I see a Pulmonary Physician and Cardiovascular Doctor. Along, with more testing. I may be interested in Palliative Care at some point. I am curious about whether I can get it down here in Southeast Iowa. How can I find out more about it?

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There are some palliative care resources in southern Iowa, but it will depend upon where you live. I don't usually advise Dr. Google, but in this case, you might try this search:
Palliative Care near me [your zip code or nearest medium sized town or city]

Sue

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 29, 2022
In reply to @carsoncreek "I was recently diagnosed with Pulmonary Sarcoidosis. And, I also have a twisted aorta that is..." + (show)
@carsoncreek

I was recently diagnosed with Pulmonary Sarcoidosis. And, I also have a twisted aorta that is somewhat calcified. I have 100% confidence in Mayo, MN, and love everyone there. Next week, I see a Pulmonary Physician and Cardiovascular Doctor. Along, with more testing. I may be interested in Palliative Care at some point. I am curious about whether I can get it down here in Southeast Iowa. How can I find out more about it?

Jump to this post

In addition to @sueinmn’s recommendation to look for local palliative services, you may also wish to talk to your Mayo pulmonologist and/or cardiologist about palliative care options at Mayo Clinic.

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