Dr. BJ Miller Talks Electrocution, Amputation, and #EOL Care

I stumbled upon this great TedTalk from Dr. BJ Miller, hospice and palliative care physician at the Zen Hospice Project in San Francisco. Dr. Miller was seriously injured in college during an electrocution accident, and had several limbs amputated. He later went on to medical school, and became a hospice and palliative care doctor. It is about twenty minutes long, but well worth the watch, especially if you are currently in need of some inspiration. I hope you enjoy it.

Dr. BJ Miller
Dr. BJ Miller

Dr. Miller says in this moving piece:

We ask too much of our hospitals. They are places for acute trauma and treatable illness. They are no place to live and die; that’s not what they were designed for.

What do you think? We recently featured an article that talked about how dying at home has real benefits for patients and families. We here at HAN are working on promoting the Care Planning Act and PCHETA to help people learn about and access options for their end-of-life care. What else can be done to promote this idea? TedTalks are a very popular method of discussing big ideas, do you have any other suggestions? Let us know in the comments!

NHPCO Hosts Congressional Briefing on We Honor Veterans

NHPCO's Jon Keyserling talks with Heartland Hospice Volunteer Coordinator Lt. Col. David Benhoff, USMC (Ret.)
NHPCO’s Jon Keyserling talks with Heartland Hospice Volunteer Coordinator Lt. Col. David Benhoff, USMC (Ret.)

NHPCO and HAN had a big day today! We were on Capitol Hill, along with the Department of Veterans Affairs, talking to congressional staffers about the We Honor Veterans program and the unique needs of Veterans at the end of life.

Over 60 congressional staffers attended the event, as well as representatives from several other aging and health-related organizations. Speakers included NHPCO’s Jon Keyserling, as well as the Executive Director of Geriatrics & Extended Care Operations at the Department of Veterans Affairs, Dr. Thomas Edes, and the Heartland Hospice Volunteer Coordinator, Lt. Col. David Benhoff, USMC (Ret.).

There were very few empty seats in our briefing room!
There were very few empty seats in our briefing room!

We got a lot of great traffic on social media for our event too! Thank you everyone who favorited, retweeted, and tweeted with #WeHonorVets. We even got retweeted by Senator Mike Crapo!

There was a robust discussion with several good questions from the audience. One staffer specifically wanted to know what Congress could do to help. Of course we told her about the Care Planning Act, and nuances of the Medicare Hospice Benefit and how it interfaces with VA policy. But I also want to open it up to you: Do you work with the We Honor Veterans program? Do you have any suggestions for improvement? Is there anything you think Congress could do that would improve the care Veterans receive at the end of life? Let us know in the comments!

Clergy Promoting Death Discussions

Taylor pointed toward the pews, telling people that they were going to die. She called out younger and older congregants by name, saying that they, like herself and everyone else in the room, would one day stop breathing.

That is the beginning of a great article by Huffington Post reporter Jaweed Kaleem, investigating the Conversation Sabbath. The Conversation Sabbath is a movement spurred by The Conversation Project, a non-profit that is “dedicated to helping people talk about their wishes for end-of-life care.” The Conversation Sabbath is aimed at getting clergy to address the difficult questions of life, death, and communicating one’s wishes to family.

Clergy members can sign up to join the Conversation Sabbath, a 10-day event starting November 6, during which they commit to talk, teach, and engage with their members about sharing their “unique wishes for care through the end of life.”

 

Engaging with clergy is an important acknowledgement that the end of life is more than just a medical pronouncement. While the Care Planning Act, and PCHETA may help medical personnel to engage on these topics, how do we support non-medical professions engaging with their members on end-of-life issues? Who else needs to be involved in these discussions? Let us know your thoughts in the comments!

Do Doctors See Death as Failure?

Dr. Shoshana Ungerleider has a new article on Vox.com where she grapples with how doctors are trained to address death, both medically and in communications with patients. She wrestles with doctors’ approach to death:

Maybe it’s easier to just give someone more treatment instead of stopping and telling her that she’s dying. These conversations are never easy, no matter how many times you’ve had them. They can be enormously difficult even under the best circumstances, and often the circumstances are more like a patient (or, more often, his family) arguing, denying what’s going on and demanding to see another doctor. Maybe we just don’t want to go through it. Or maybe we hide behind more tests and procedures to make ourselves feel better — like we’re still fighting. Like we haven’t failed yet.

That part struck me: do doctors see death as failure? I recognize that their job in many circumstances is to prolong life and forestall death, but death will happen at some point regardless of all medical technology. One of the first principles of medical practice is “First, do no harm.” At what point does the prolonging of life at all costs constitute a harm done to the patient?

Dr. Ungerleider’s article left me with a feeling that most doctors are not appropriately trained on how to address the end of life. Now, certainly, patients need to take an active role in this, from discussing their desires for their end-of-life experience with family members, to creating advance directives and living wills, etc. Families need to respect the wishes of dying loved-ones, and be comfortable making the choice to stop unnecessary medical interventions when there are no explicit wishes known. But doctors are the driving force behind much of what happens in the course of treatment, and they need to be given the resources to have end-of-life planning conversations, and the training to know when to stop unnecessary medical intervention. Doctors need to be trained on how to explain to patients with life-limiting illnesses what their options are, and give the patients space to think about and engage with their options so that they can have a say in how the course of treatment progresses. I found this paragraph extremely telling:

I felt unusually at ease talking to Mr. Jones. After delivering the news, I decided to venture into unusual territory: I asked him what he understood about his diagnosis and his future. He explained that he had read online how he likely had only months to live, but that his oncologist wanted him to continue chemotherapy for now. Then I asked him what he wanted. To my surprise, he paused. After a moment, he looked up, tears welling in his eyes.

“I’ve had a wonderful life,” he said. “I have an amazing family who loves me, and I want to be at home with them, not here in the hospital.” He started crying. He grabbed my hand. “No one has asked me what I want. Can I please go home? All I want is to be home.”

“All I want is to be home”. At the end of life, after so much has happened to a person, whether it be an elderly Veteran who survived war and raised a good family, to a young child who has suffered too much for their short life, shouldn’t such a simple request be honored? All the medical technology in the world can’t replace the comfort of home and family. We need to give doctors the training and support to ask these questions, to talk to their patients about options for care. “What do you want for your end-of-life experience,” is certainly a difficult question to ask, but doctors are doing the patient a disservice if they don’t ask it.

 

Did this article make you think? Check out our resources on The Care Planning Act and see what HAN is doing to support and promote advanced care planning. 

Kinnser to Fund Scholarships for Advocacy Intensive

HAN is happy to announce that we have an additional scholarship sponsor for the 2016 Advocacy Intensive! Kinnser Software has agreed to join Outcome Resources as co-sponsors to help us ensure that we can include as many Hospice Advocates as possible at next year’s event! Advocacy Intensive sponsors are responsible for helping over fifty Hospice Advocates afford the trip to DC, and they help HAN provide all Advocacy Training free of charge to attendees. We would not be able to do what we do without our sponsors, so everyone please give a big Thank You to our new scholarship sponsors, Kinnser Software, Inc.!

“NHPCO has proven to be a valuable resource for our organization, and helps us ensure that our customers are up-to-date on the rapid deployment of changes occurring in our industry. We are happy to be a part of their annual Advocacy Intensive”  – Jeff McQuilliams, Kinnser Software, Inc.

KinnserSoftware-logoHIGHRES

Do you know of an organization that would like to help us expand the availability of the Advocacy Intensive? Have them email us! We are always looking for scholarship sponsors to help us involve as many Hospice Advocates as we can!