Fill Out Your Profile to share more about you. Learn more...

Any experience with Palliative Care?

Options

My MO added a recommendation for Palliative Care in my chart after our last visit.

I'm unclear on what it covers and how it might benefit me or my family.

I have done some reading and watched a few videos and I'm not totally impressed; seems very administrative and leaning into the social workers arena of education and away from medicine. I've seen a lot of buzzwords like 'wholistic' and 'management' and 'inter-personal partnerships' which explains nothing.

What does Pallative care entail and is it medical or not?

If you have experienced Palliative Care please tell me about it here.

Comments

  • spookiesmom
    spookiesmom Member Posts: 8,168
    Options

    For my DH. An intake nurse came, talked with both of us. All sorts of questions. Did we have burial set, did he want someone to help him shower? Just everything you could think of. That afternoon a hospital bed was delivered, 02 came, his pain meds had been adjusted and increased. Another nurse came by every few days to check on him.

    They offered me various types of help, my DD is close her DH is a nurse, so I really didn’t need them.

    I didn’t have to pay for anything. I guess Medicare covered it.

    When he got worse, an ambulance took him to inpatient hospice, where they kept him comfortable till he passed.

    Palliative care is all about keeping the patient comfortable. I thought it was wonderful.

  • maggie15
    maggie15 Member Posts: 853
    Options

    Palliative care can be at any level as long as you have a diagnosis that covers it. I'm likely to be around for a while but I have progressive radiation induced pulmonary fibrosis which falls under the diagnosis umbrella. My PCP referred me after my third fall caused by cough syncope since many of my issues were out of her comfort zone. The PC doctor contacted all of my other doctors (three different hospitals in two states,) got my meds adjusted and added one of his own. I am really happy that the passing out due to coughing has stopped and I can keep my driver license. I take most of my pain meds at night but their effect lasts into the day and I get more relief with less. He managed to improve the bigD/bigC roller coaster so that I have fewer episodes. He even found an ortho who would do meniscus surgery on me while awake since being intubated could set me on a downhill trajectory.

    Medicare part B and my medigap insurance cover it since I'm outpatient. I'm sure it's worth it to them given what I was costing in ER visits and the scans required when you knock yourself out. One of PC's specialties is pain management and they work with patients who are office visitors, at home, in the hospital or in a nursing home. The amount of social work involvement depends on the situation. One of my former students who is paraplegic is a patient at the office and he has counselors working with him on job training and finding a place where he can live independently. My mother used hospice for end of life care and it was wonderful.

    It's different from ordinary medical care because of the other services offered but I pretty much use just the medical side of it. You can keep up curative treatment at the same time so it's definitely not giving up. The medical part of hospice is supervised by the same office but that is different from palliative care. Hope this helps.

  • brutersmom
    brutersmom Member Posts: 882
    Options

    I was diagnosed in January with metastasis to the pleura of the lung. I have responded extremely well to Ibrance and letrozole. I am working and still go to the gym for aerobic classes and weight lifting. My chart says level one palliative care. Basically I meet the criteria and it allows more flexibility with treatment and services if I need it. It doesn't mean that "cure" or no evidence of active disease won't be achieved. It just means I meet the criteria. There are 4 levels.

  • AKJ
    AKJ Member Posts: 115
    Options

    I was referred to Palliative Care by my oncologist. I met with a doctor and social worker. Their main focus was to help manage my anxiety and find out what my wishes for treatment and end of life are. They increased my antidepressant and prescribed Ativan. They also referred me for counseling. It helped a lot! I don’t need to go back for awhile. They help in whatever way you need to feel more comfortable