It’s an absurd question when you mull it over. It’s mildly rude, it’s unusual, and it’s disturbing to contemplate. It can be a threat or it can signal sympathy. So let me ask you: how would you like to die?
Even the sardonic Tyrion Lannister, from the epic and brutal Game of Thrones on HBO, wants familiar comfort (click the image to see what he has to say).
Like Tyrion, most people want to live a long life and die at home. They want to pass gently, not as their ribs break or a tube is shoved down their throat. But too often, their family and their health care team don’t know what they want. Too often, their wishes aren’t expressed or aren’t communicated to the people taking care of them.
But this could all change. Last year, the tireless efforts of Susan Hickman, Dr. Jerry Walthall, and the members of the Indiana Patient Preferences Coalition finally paid off: the Indiana legislature passed a new medical order, the Physician Order for Scope of Treatment (POST).
How might the POST form change end-of-life care? I noted the basic features of the POST form last year, and as I pointed out then, it applies to patients with serious illness and can be a tremendous help in ensuring their treatment preferences are honored.
To wit, a recent study suggests that a POST form could help you spend your last hours at home, if that’s your goal. Of course, there’s more to the study, but here’s the take-away:
Of about 12,000 patients who filled out Oregon’s equivalent of the POST and who selected comfort measures only, 93 out of every 100 died at home. Only seven out of every 100 died in the hospital.
Of about 40,000 patients who didn’t fill out the equivalent of a POST form, 36 out of every 100 died in the hospital.
But the POST form is just that: a form. By itself, a form can’t make this kind of difference. The POST form needs to be part of a broader movement—a movement toward improved Advance Care Planning.
Advance Care Planning sets the stage for treatment decisions that respect the choices of patients with serious illness. Advance Care Planning should include identifying a health care representative (particularly in Indiana). It should also include meaningful conversations about what you would want as the end comes near.
But how do you have a meaningful conversation about what you or your patients want at the end of life? NPR recently highlighted The Respecting Choices approach to these conversations and the program is worth a listen. As they note, this approach, which comes from La Crosse, Wisconsin, has been wildly successful: 96 percent of people who died in the La Crosse community had completed some form of Advance Care Planning, whereas nationally, the average is around 50 percent.
When members of the Northeast Indiana health care community (and myself) were given the opportunity to have Linda Briggs, Associate Director of Respecting Choices, join Susan Hickman in Fort Wayne for training in the Respecting Choices approach, we jumped at the chance.
But how will Advance Care Planning improve how we respect patients’ choices at the end of life? The Respecting Choices training pushes us to rethink health care at the end of life. Improving Advance Care planning requires a cultural shift, a move away from the way things are to the way things could be. For example, one of the first things I learned was that the question is not, “How do you want to die?” but “What does it mean to YOU to live well?”
Moving forward, here’s what I need you to do: send this story to every hospital administrator, physician, nurse, social worker, and any other healthcare professional in Northeast Indiana you know. We need patients to think and talk about their choices, but as importantly, we need healthcare professionals who are ready to have these conversations. The individuals listed below have already been trained to facilitate conversations about patient choices, but more training will take place in the fall.
In the meantime, at 8 AM on June 24 at Aging and In-Home Services, a panel of local experts, including Keith Huffman, Katie Hougham, Dr. Geoff Randolph, and I, will be talking about and answering questions about POST and Advance Care Planning. The event is free and open to the public. Please RSVP to Katie Hougham.
Even if you can’t make it to the panel, if you’d like to be keep informed on how we’re improving Advance Care Planning in Northeast Indiana, get in touch with the Northeast Indiana Coalition for Advance Care Planning (NICA). You can like us on Facebook, follow us on twitter, or send an email to Katie Hougham (the NICA Project Coordinator).
Finally, we should all be proud of the individuals listed below and their home institutions. They will trailblaze the effort to improve Advance Care Planning in Northeast Indiana, to improve the care of patients at the end of life, and to respect the choices of patients in all phases of life.
Trained Facilitators and their home institutions:
- Visiting Nurse - Robin Hassig*, Katelyn Hougham*
- Parkview Whitley - Duane Ginder, Char Conrad, Sasha Shumpert, Alicia Williams
- Covington Commons - Shari Rivera
- Fort Wayne Medical Education Program - Dr. Aaron Coray, Dr. Amy Dawson, Heidi Musgrave, PhD, John Musgrave, PysD
- Millers Merry Manor Columbia City - Dawn Mast, Audree Ousley, Tricia Starnes
- Lutheran Hospital - Susan Berghoff*
- St. Joseph Hospital - Liz Andrews-Murry
- From Blufton - Anita Rediger- Pastor; Mary Lynn Frank- Christian Care Retirement Community
- Others - Kathy Hybarger- Healthcare Excel
(*Also trained as a Respecting Choices Instructor)
Abraham Schwab is an associate professor of philosophy and medical ethicist at IPFW.
Opinions expressed in this column are those of the individual writer and do not necessarily reflect the opinions of the staff, management or board of Northeast Indiana Public Radio. If you want to join the conversation, head over to our Facebook page and comment on the post featuring this column.