It's difficult to think of our own death, much less the passing of a loved one. According to the Conversation Project, more than 90% of us think it's important to discuss end-of-life wishes, yet only a fraction of us do it.

Those conversations happen even less frequently and it's often a taboo topic, especially among medical professionals and care providers for people with an intellectual and/or developmental disability. (IDD)

Approximately 7 to 8.5 million people in the U.S. have an intellectual and/or developmental disability (IDD), representing about 3%–5% of the total population, and they are often not at the table for end of life discussions. Why is that?

In this episode of Grave Concerns, host Cathy Wurzer dives head-long into the conversation with three guests who have helped people in the IDD community talk about their mortality and why they need to be included in these conversations.

Sarah Hall is a researcher at the University of Minnesota. She was joined by Sue Walker and Cate Saracen-Peters from Hammer and NER, one of the largest disability service providers in Minnesota.

Some of the resources discussed in this episode are here: https://www.caresearch.com.au/tel/

https://ageucate.com/

https://hammer.org/together-we-ensure-tomorrow/aging-well-end-of-life-care/

This is a follow up conversation from episode two, but this one is all about the difficult and sometimes confusing decisions patients are asked to make when filling out an advance care directive.

Join guests Susie Putzke and Jill Massman, who have walked people through the thicket of medical options, in their respective roles as a former hospital chaplain (Rev. Putzke) and director of clinical services at Quiet Oaks Hospice in St. Cloud Minnesota. (Jill Massman, RN, DNP, APRN, AGCNS-BC, ACHPN, OCN)

Information on Quiet Oaks Hospice House: https://quietoakshospicehouse.org/

Making medical decisions: https://theconversationproject.org/nhdd/advance-care-planning/

If you have a bad accident and are in a coma, or maybe you're coming close to the end of your life, do you think your medical team would know what kind of care you'd like if you couldn't speak for yourself?

There's a written form called a health care directive that outlines the kind of care you want and don't want if you're not able to make your own medical decisions.

What's the philosophy behind these legal documents? In this episode, we'll talk with one of the country's foremost experts in advance care planning, Dr. Bud Hammes, who was the force behind Gunderson Health System's "Respecting Choices" program.

Also joining us, Dr. Nneka Sederstrom, the former Chief Health Equity Officer at Hennepin Healthcare in Minneapolis Minnesota and co-founder of UzObi, an advance care planning tech company.

Our first episode is a deep conversation with a woman who was told to prepare to die as cancer riddled her body, but Deanna Thompson is still here, still living as vibrantly as possible alongside the cancer that remains at bay.

Thompson is a retired professor of religion at St. Olaf College in Northfield, Minnesota. (Deanna A. Thompson | Home is her website!)