Participatory patients live with day-to-day ‘engagement’ but end-of-life is an oft-missed opportunity for participation that can result in more ‘control’ than any other time in life. End of life planning is also an opportunity for a deeper understanding of what makes life worth living.

My own participatory ‘aha’ came via a tweetchat for hospice and palliative healthcare professionals #hpm. As the only ‘layperson’ I realized how little I knew beyond DNR and CPR. I began learning from my virtual community, started blogging about what I learned, and created BestEndings.com.

The gifts that creating this website gave me:

• To better understand that palliative care equals the best possible person-centered care
• To pay attention to moment-to-moment joys and pleasures.

Here’s my TEDx talk.

While values and beliefs are the catchwords of the day, I say take a different approach to elicit meaningful ‘participation’ in orchestrating the best possible end of life: focus on comfort. In a series of interviews with patients in a complex continuing care facility, the answers about ‘comfort’ surprised even those nurses who’d come to know these patients from their years at the facility. Check out what we learned about comfort here.