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

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.

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.

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.

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?

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!

Hi 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.

My 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

@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?

Hi @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?

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