Tips for Having a Conversation About End-of-Life Care
Mike Bernhagen from Rainbow Hospice Care of Jefferson, Wisconsin, and teacher and filmmaker Terry Kaldhusdal, from Oconomowoc, Wisconsin were brought together by their personal experiences of loss to produce a documentary film called, "Consider the Conversation."
The film examines multiple perspectives on end-of-life care and features interviews with patients, family members, healthcare workers and national experts from across the country. Among those interviewed was James Cleary, MD, oncologist and former director of UW Health's Palliative Care Program.
Dr. Cleary is an international leader in Palliative Medicine and continues to develop and implement educational initiatives in palliative care for clinicians throughout Wisconsin. He is Director of the UW Pain and Policy Studies Group, a World Health Organization (WHO) Collaborating Center for Pain Policy and Palliative Care.
Following is Dr. Cleary's account of why he participated in the film, and suggestions for how families can begin to have their own conversations on the challenging topic.
A Taboo Subject
If you get the morning paper, chances are you read the obituitaries. Yet, we continue to treat death and dying as a "taboo" subject. So, it was not a hard sell getting me involved in Consider the Conversation. When Mike, a hospice worker, and Terry, a teacher and filmmaker, approached me with the story they were telling, it resonated.
Honoring people's wishes is a great aim when faced with a serious or advanced illness, but how can "we" do this if "we" never know about those wishes. Having those discussions early and often is important, but it is often a subject we avoid.
It always strikes me as somewhat ironic that we have wills and financial powers of attorney drawn up. We joke openly in my own family that we shouldn't upset my mother, because she may leave us out of her will.
But health care at the end of life remains a subject largely ignored even though it is important to us both individually and as a society. Consider the Conversation is a great vehicle to get those conversations going and it has been an honor to be involved in the project.
What to Consider When Having the Conversation
We often delay talking about end-of-life care because there just doesn't seem to be a right time to have the conversation. Yet thinking about, and having the conversation about end-of-life wishes are among the most important things you can do for yourself and your family. Dr. Cleary offers these tips as a starting point for conversation:
- Who will make health decisions for me if I can't?
- Have I documented that choice so that clinicians will know to whom to turn?
- What do I want those decisions to be?
The individual you chose to make health decisions for you in the event that you cannot, may not be the most obvious choice. Those closest to you may struggle to honor your decision. And, it's important to remember that just having the conversation does make not make things happen any sooner.
Watch Consider the Conversation
The film will air on local PBS stations, including Milwaukee and Wisconsin Public Television. Find airdates for your station on Consider the Conversation website.