Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.
Connect
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?
-
Like -
Helpful -
Hug
3 Reactions@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.
-
Like -
Helpful -
Hug
2 ReactionsThank You Colleen.
-
Like -
Helpful -
Hug
1 ReactionHi, 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.
-
Like -
Helpful -
Hug
4 ReactionsHi @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
-
Like -
Helpful -
Hug
3 ReactionsHi @debbmol62, I add my welcome to you. You'll notice that I moved your message about palliative care (PC) to an existing discussion in the Lung Health group. If you click VIEW & REPLY, you can read all the past posts in the discussion that include great information about palliative care.
You ask specifically about pain. Managing pain is a big part of palliative care. Palliative care providers have extensive training and experience in pain management. In fact, palliative care is often referred to as "comfort care" because a main goal is to relieve pain and suffering and bring comfort. I'm really glad that you have been offered palliative care.
Here is an article about pain management and palliative care that may interest you.
- Pain (Virtual Hospice) http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Symptoms+_+Health+Concerns/Pain.aspx
What specifically would you like to know about the CDC Guidelines for Pain Management and palliative care?
-
Like -
Helpful -
Hug
4 Reactions@debbmol62- It sounds like you have had a very bad time and I don't blame you. I can certainly hear the frustration in your tone.. Have you had any chest operations that would paralyze your diaphragm? Do you know what the cause is? It is my understanding, because I am on palliative care too, that a big part of palliative care is comfort and pain control. Palliative care is taking care of all of you, not just when you are at the end of your life. Your quality of life is so important. Do you talk to your doctors about this?
-
Like -
Helpful -
Hug
3 ReactionsMy husband with stage 4 aggresive prostate cancer , spread to his lymph nodes , 2 places in his hip and its spread to his liver he hardly talks about it ,, i did make him sit down and tell me who he wants his things to go to , and got some phone numbers out of him ,, he bought a will pack but hasnt written it yet which worries me as our house would be left to me ,, but he dosent say anything ,, i have to make sure he has enough meds as he dosent tell me when running low ,, he gets up late showers , goes to get his daily paper and then sits all day on facebook ,,, i sometimes feel like the maid ,, how do you get support , i could do with some really ,, im in England , and good luck to all of you suffering with the cruelest disease
-
Like -
Helpful -
Hug
1 ReactionHi Maudie, I'm sorry that your husband is not communicating with you. It sounds like he prefers not to talk openly about the future and is perhaps in denial and scared. But you need support too. You might ask about an oncology social worker appointment.
Since you're in England, I highly recommend MacMillan Cancer Support https://www.macmillan.org.uk/
They offer so much and many different ways to get support in the manner you prefer. The website can be a bit overwhelming, so let me direct you to two key areas to get you started.
- Information specifically for Carers https://www.macmillan.org.uk/cancer-information-and-support/supporting-someone
- Macmillan Support Line 0808 808 00 00 https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/macmillan-support-line You can call during business hours
You're not alone. I look forward to hearing that you connected with someone helpful at Macmillan.
-
Like -
Helpful -
Hug
3 ReactionsPalliative 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!
-
Like -
Helpful -
Hug
6 Reactions