Palliative Care is one of those things. EVERYONE associates it with end of life care (it's also unfortunately named since no one knows what Palliative means). But guess what? That's not what it is. Here's the Mayo Clinic definition (everyone loves the Mayo Clinic (insert sandwich joke here)and check out the graphic above which details all the areas Palliative Care can support):
Palliative Care is specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness, no matter the diagnosis or stage of disease. Palliative Care teams aim to improve the quality of life for both patients and their families. This form of care is offered alongside curative or other treatments you may be receiving.
Palliative Care is extremely different than Hospice. Hospice is when you have a set time horizon, usually 6 months, and the goal is to make you as comfortable as possible. Palliative Care can help with symptom management, and really focuses on the whole you over the length of your disease (so why isn't it called Whole Person Care? Great question and that's why they need marketing help!). As the illustration above shows, there is a lot more to a patient than just medication or surgery, and Palliative Care supports you across all of it. Think of it as western medicines effort to recognize that you as a person are more than your diagnosis. Another important fact about Palliative Care is that you should engage when you get diagnosed. You can be involved with a Palliative Care team for years and years and years. Great podcast here in case anyone is interested in learning more about Palliative Care and the differences between that and hospice. I actually loved this episode. It's an interview with Dr. Banerjee, a Palliative Care specialist at City of Hope.
Ok, so why is this all relevant to Burt? My medical team is at OHSU in Portland OR (in case I haven't said that enough already) and OHSU has a Palliative Care team. So of course, I asked for a referral and Krista and I met them on Monday. For starters, they spent over an hour with us answering questions, discussing goals, filling us in on how they work and what they can do for us. We had a social worker, a nurse practitioner and a nurse on the zoom with us. They all really listened to us and the notes from the visit were extremely comprehensive and showed real active listening. Not only did we do all the things I just mentioned, but they asked about our concerns, treated us as equals, and offered to help and advocate on our behalf. We got off the phone feeling very supported and cared about.
Now, I am doing really well. My symptoms aren't very bad, I am pretty functional and independent. BUT now I have a relationship with a group who can really help us navigate this mess, can help make our lives easier and will focus on all of me (and us) and not just my medications. If you are a patient or a caregiver, you should absolutely reach out to the Palliative Care team wherever you are being taken care of. They are a great resource and will (hopefully) help you feel like there are people out there looking out for you!
As always, if you read this and want to discuss any of it in more detail, please let me know. I am now a big Palliative Care advocate!