Community-based palliative care

“If they told me I had six months to live, or [could instead] go to the hospital and last two years, I’d say leave me home.”

The sentiments are familiar to me.

I’ve heard many hospice patients utter such words—and certainly my own mom, who somewhat-politely refused to return to the hospital after her last admission four years prior to her death.

When her doctor recommended a trip to the ER, she chose to go home and watch Netflix with her cat and eat peppermint patties instead.

And—she lived with us, had me to take care of her, and we stayed in close contact with her physician’s office.

The context of care matters.

Regardless, the words above don’t belong to my mom or any of my former patients—but to Gerald Chinchar, a 77-year-old Navy veteran highlighted in a great article by NPR entitled, “For Some, Pre-Hospice Care Can Be a Good Alternative to Hospitals.”

The article provides an excellent overview of the benefits of community-based palliative care that is separate from hospice care. In this model, patients with severe illness can receive care at home for pain and symptom management—usually within an interdisciplinary framework—yet still pursue “curative” treatments as needed.

My mom was enrolled in such a program for several months prior to transitioning to hospice. It was such an incredible relief to have her doctor walk into her bedroom and embrace the type of care Mom wanted for the remaining months of her life.

Although the hospital is certainly the best setting for many situations—community-based palliative care may be a wonderful alternative for those with serious illness who would prefer to receive their care at home.

For more information, check out getpalliativecare.org.

And for additional resources, please visit our page, Resources for the Journey.

What’s it like to wake up the day after you planned to die?

It’s not my question, but that of BBC News writer Beth Rose. In a recent article for the outlet’s disability column, Rose tells the story of Colin Campbell, a resident of Scotland’s Inverness, who has been living with progressive disability due to multiple sclerosis (MS).

Discouraged by his growing struggle to maintain the quality of life he was accustomed to, Campbell had traveled to Switzerland to undergo evaluation for assisted suicide, since it’s illegal in Scotland.

He was approved and selected June 15, 2017 as the date of his death.

However, his plans changed when another individual with MS heard his story, Rona Tynan.

Of Tynan, Rose writes, “I heard the words ‘multiple sclerosis’ and ‘Inverness’,” she says. “So I dashed to the telly in my wheelchair and listened to Colin’s story. I felt desperate that he was feeling he had to take this action.”

I won’t repeat all of the details here, and encourage you to read the whole story on the BBC News site.

But the beautiful bottom line was that Tynan suspected that Campbell may not be getting all of the support that he was entitled to.

And she was right.

Once she helped him access it?

His quality of life improved so much that he decided to cancel his plans.

Though this post isn’t about the hot topic of assisted suicide, I’ll just give full disclosure and say that I’m not a supporter of this growing trend.

Instead, I believe that if folks get the right support and effective palliative care, they are better equipped to embrace the quality of life they long for.

And, as a Christian, I also believe that timing is up to God, not me.

If you’re not sure exactly what I mean by “palliative care,” here’s a great explanation from GetPalliativeCare.org:

We were so blessed when my mom was in need to have a community-based palliative care provider in our area. But it can be difficult to find those types of resources if you don’t know where to look. That’s why I’m really excited to see a new tool that GetPalliativeCare.org has created. Here’s the info that landed in my inbox recently:

For patients living with serious illness, locating palliative care resources in the community can be challenging. To help meet this need, we are proud to announce the newly-redesigned Palliative Care Provider Directory. With this new tool, anyone looking for palliative care resources will be able to search the directory by location and service type (hospital, home, nursing home, and office/clinic).

I just plugged in our zip code and found a provider nearby that I didn’t know about. Very cool.

If someone in your life is struggling with a serious illness and needs more support, there may be a palliative care provider nearby that can help.

You might want to check it out.

For more resources about this and other topics, please visit our page, Resources for the Journey.

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A cat. A movie. And peppermint patties. Sometimes there are alternatives to hospitalization.

Living with a disability: Why the right support can make all the difference