The Hardest Question

The family dropped by The Residence of Arbor Hospice unexpectedly instead of setting up an appointment, which is the preferred course. So, out of desperation, they tried my line. "I'll do it," I enthused looking for an excuse to leave my computer and interact with family members.

Introducing myself to the team of five, I learned they were all visiting from out of town. Looking exhausted as families so often do by the time I meet them; California, Colorado, Washington, they were all here from somewhere else trying to do the right thing for their sister. "I can't care for her at home any longer," confessed the daughter, who was doing her best but needed support. Two days of meetings with the oncologist, the internist, the surgeon, had left them spent and bewildered. What was the right thing to do?

After the tour, I responded to a few questions, "do you have physical therapy and occupational therapy," asked one. No, I explained that our focus was on comfort care and that if rehabilitation was needed, their sister/mother would be better off in a skilled nursing facility.

When all their questions were answered to the best of my ability, I asked the stumper question. It's the question I've come to learn that stops them cold. I have only met one family who could answer it right away.

"What's important to your sister from this day forward? If she can't be cured, how does she want to spend the remainder of her life?" It is my experience that these are the questions that often don't get asked during the frantic encounters with our medical system. These questions and many like them, are asked of patients and families when a loved on is enrolled in hospice and then the hospice team works to make it happen.

"Well, she likes baths; do you have a place for a bath?" I showed her the spa room with a large jacuzzi-type tub. "She lives on the water and loves looking out on the water." I showed the pond and the beautiful gardens. "She'd like this," remarked the daughter.

I have found that when we focus on what the dying person wants, by giving them a voice, the patient and their family is energized. The mood changes from doom and gloom to one of possibilities. There is an immediate shift in energy.

So, what about you, do you know what you want at the end of your life? Here are my top three wishes:

1. I'd like to be outdoors when I die, preferably under a tree with the sunlight on my face (unless it's  
    winter of course, then I'd like to be by a sunny window).

2. I too love baths, with lots of bubbles, please.

3. Funny YouTube videos like Ellen DeGeneres - Here and Now should be playing and if we laugh
    too hard, please play some Carol King and the Beatles.

This blog entry was written by Margaret Adrain, Arbor Hospice Vice President of Marketing and Business Development. You can contact Margaret by commenting below or emailing her at madrain@arborhospice.org.