Palliative Care Helped Me Identify My Long-Term Needs for COPD 

Palliative care is different from hospice. Here are the basics and how it’s helped me feel empowered in my chronic obstructive pulmonary disease (COPD) care.

A few months ago, my conditions were flaring, and I was facing ankle reconstruction. I was concerned about pain control and how my COPD would do after the anesthesia. Around the same time, someone in the Bezzy COPD forum mentioned palliative care.

I began to look into what palliative care was all about, and it didn’t take me long to say, “Sign me up!”

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What’s palliative care?

The National Institute on Aging defines this form of care as “focused on improving quality of life for people with serious illnesses and their care partners.” Palliative care is about nurturing your well-being as you navigate a long-term illness that will most likely continue to progress.

Your local hospital system usually provides palliative care, but sometimes, a large physician’s practice will offer it. It’s easy enough to find it through your doctor, insurance company, or your state’s Department of Aging. Medicare and most major insurance companies cover palliative care costs.

Palliative care doesn’t have as many set rules as hospice does. There’s no anticipation of death in the near future.

How it’s different from hospice

Palliative care can help someone and their family cope with illness, but it’s very different from hospice. It’s not a preparation for the end of life.

It’s about increasing your quality of life as you deal with your health situation. They know that your loved ones need this as much as you do, so they’re brought into the discussions with your permission.

The condition(s) you receive treatment for can include cancer, kidney disease, heart conditions, dementia, and lung diseases such as COPD.

There’s also more than just the nurses that come with hospice. Most palliative care departments include doctors, nurses, physician assistants or nurse practitioners, social workers, and sometimes connections to religious organizations.

What palliative care can do for you

Palliative care is not the same in each place. A lot of it depends on the staff available. You have to discuss what you need and see how much they can help you. I was hoping that they could help me with pain medication and work coordinating my specialists.

While they couldn’t do what I wanted exactly, palliative care was able to help me with some things I didn’t expect, including letting each of my doctors know they’d be there to help me with anything that they couldn’t.

I found out palliative care has a dedicated social worker who can organize rides, equipment (including oxygen), rehabilitation, and other things I didn’t even know my insurance covered, like meals for when I came home after surgery.

Palliative care can also help you with advanced care planning, which includes a healthcare power of attorney, a living will, and an advance directive. It’s one of those things we don’t want to think about doing, but it’s very important to have experienced professionals do it with you. The fact that this service is free is a big help to me.

When to consider palliative care

My therapist and doctors have always told me how wonderful I am about managing my healthcare and advocating for myself. There have been times when I didn’t feel that way.

I also started to have more moments when I felt it all too much. I needed some help with it all, and that’s what led me to palliative care.

The only “rule” for palliative care is that you have at least one progressive condition, meaning it will more than likely continue to worsen. Next, ask yourself if you’re having trouble arranging your care and if you’re preparing for when the disease becomes more debilitating. If you say yes to either of these questions, that’s the time to check out palliative care in your area.

It doesn’t matter your age or stage of your COPD. You also don’t have to make any commitment to how often you use palliative care. You won’t know everything they can offer until you make that call. Knowledge is powerful for you and your family, especially if they’re your caregivers.

Takeaway

In an interesting twist of fate, my palliative care doctor was my first primary care doctor when I moved to the Midwestern United States 16 years ago. She left the practice to raise her children. I’ve been speaking with her every month, and I find it comforting.

I tell her the problems I’m having and my fears for the future. She offers suggestions and referrals and lets me know if it’s something she thinks the social worker can help with. I know my condition(s), especially my COPD, will continue to get worse.

I certainly hope it’s a slow process, but I’m glad I joined palliative care to help me through it.