Dear Patient and Caregivers,
This is 5 of 5 posts on managing graft vs. host disease symptoms! Thank you for hanging in with me.
You may want to participate in a Palliative Care program, but first, let’s clarify what Palliative Care is and isn’t. First and foremost, Palliative Care is NOT the same thing as Hospice. In many health organizations, Palliative Care is in the same department as Hospice because they are related but vastly different.
If you’re seriously ill, you may have to manage not only your medical condition but physical, emotional, and practical matters as well. You may be in pain or too tired to get through the day. You and your loved ones may feel overwhelmed by endless decisions to make or need financial assistance. This is where Palliative Care can be extremely helpful.
Palliative Care is also known as supportive care. Palliative doctors team up with your regular doctors to focus on symptoms like trouble breathing and stress. Unlike with hospice care, you can receive palliative care at any stage in your disease and continue to get treatments to cure it. Palliative care is a whole-person care that gives you an extra layer of support so you and your family can live better. You can stop receiving Palliative Care any time you want.
How can Palliative Care Help?
- Palliative Care is specialized care for people (children and adults) with serious illness and is provided by doctors, nurses, social workers, and spiritual advisors. It is provided in coordination with your primary care physician (or in my case, the transplant team). Examples of what a serious illness is are congestive heart failure, cancer, kidney or liver failure, HIV/AIDS, multiple sclerosis, stroke, Parkinson’s Disease, dementia, ALS (Lou Gehrig’s disease)
- The focus of Palliative Care is to promote quality of life for patients and their families who are living with a chronic progressive illness as given in the examples above. To reiterate, the focus of Palliative Care is not to treat or cure your disease, but to ease your symptoms and any side effects of treatment.
- The goal of Palliative Care is to address and resolve the discomfort, symptoms, and stress of serious illness. The intent is to help you and your family live the best possible life.
- Your palliative care experts will ask what you may need and want. Maybe you’d like to feel well enough to leave the hospital or to move to the next step in your treatment. Or, you may want to get stronger so you can see your daughter play baseball or attend your friend’s wedding. The Palliative Care team can help you reach these goals.
- The team can answer questions about treatment options, help you make decisions, and let your regular doctors know your wishes. You’ll have more control over your overall care this way.
- Services are provided at the same time as all other medical treatments.
Here’s my experience with Palliative Care:
I enrolled in Kaiser Permanente’s Palliative Care program one year after my stem cell transplant for a couple of reasons. First, a meaningful quality of life is very important to me, and I wanted my wishes to be followed should my condition worsen. Some patients’ cancer relapse and need to get another round of chemotherapy AND another stem cell transplant…I didn’t want to go this route if the first transplant failed. Second, I felt I needed an additional support team to work hand-in-hand with my transplant team to advocate on my behalf. And last but not least, many things can go awry when you enter the healthcare system, and I felt the Palliative Care team would do their best in honoring my wishes and advocating for me.
At my first consultation with the Palliative Care team at Kaiser Permanente, I met with the doctor, nurse, social worker, and spiritual advisor. They asked questions about my medical history, Advanced Directives (my health wishes should I be unable to make these decisions), support system, current symptoms like pain, shortness of breath, side effects from the stem cell transplant, and so on. We discussed what help I needed and how they could help me. Long story short, thankfully, I didn’t need to be hospitalized for worsening conditions or relapse. However, what was helpful was individual counseling. After about 1 year of being in the program, I decided to end Palliative Care because I was doing much, much better, physically and emotionally.
Consider Palliative Care if you or your loved ones have a serious chronic illness and you need help with managing symptoms, emotional support, transportation/logistics, pain management, counseling, financial guidance, and any other assistance or support you may need. Don’t do this alone…ask for help!