What does “palliative care” feel like?

It’s hard to imagine what a palliative care environment is like unless your family has experienced a loved one dying in one.

Almost eleven years ago, my 89 year old mother was dying of lung cancer. Fortunately, the almost five-year course of the disease had left her mostly symptom- and pain-free. But, about a month before she died, my mom suffered a nasty fall. After a day or so of hospital tests her (very wise) physician told us, “the disease has spread to her brain; there’s nothing more we can do. I suggest we transfer her to hospice.”

Startling, but not unexpected, news.

We talked with my mother about the transfer. She was calm and knew it was for the best.

I don’t remember what I was expecting when we accompanied my mother to the hospice facility, but it certainly wasn’t the kind of vibrant atmosphere we found there.

After all, death is supposed to be solemn and foreboding.

But not here. Here, families were sitting in a spacious greatroom, watching TV, playing games and laughing. There were kids around. The staff was upbeat and engaging.

We were shown to my mother’s room and encouraged to visit any time, day or night. A staff nurse reassured us that my mom would be well taken care of and never experience any pain.

All I can say is, she was true to her word.

None of us would say the next month was easy. The palliative care doctors, nurses, social workers and assistants were strong, compassionate and reassuring. These were people who obviously were experts in helping others die with dignity. It felt like my mom, my family and I were all on a journey through foreign territory: we were heading to an unknown destination, but with experienced guides who knew the way. They had been there before and were familiar with every mile of the road.

We’d often drop in unannounced and sometimes find my mother in the greatroom, kibitzing and joking with others. Other times we’d arrive to find her peacefully resting in her bed and would slip in and out of her room after a few minutes of quiet visiting.

At some point it became clear to me that “palliative care” was designed not just to keep my mother comfortable during those last days but also to help me and everyone else around her prepare for the inevitable, too.

My mom died in her sleep at about midnight one night, about a month after entering palliative care. When she did, a nurse called, calmly and compassionately telling me that she’d passed away peacefully. It’s hard to describe that moment, but it felt like we’d successfully completed our journey.

Eleven years later, I still feel immense gratitude to the palliative caregivers who helped my mother, my family and me through her last days. It’s impossible to thank them enough for what they did for us. Her palliative caregivers were some of the most special people I’ve ever met.

I only hope that, if the circumstances warrant, that I can be guided to my destination by people like them when my own journey is through.

And, that is what I’ve stipulated in my own advance medical directive. I hope you will take the opportunity to express your wishes, too. The Universal Advance Digital Directive™ at MyDirectives.com will guide you through the process.

written by Tom Guarriello, Ph.D.

photo credit: JSmith Photo

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