Wednesday, June 24, 2020

National Healthcare Decisions Day 2.0

In the future, those of us who survive 2020 will use words like “scary,” and “uncontrollable” in describing this pandemic year. But right now, you can control one very important aspect of your life – the end of your life. I’m not being flippant. It’s true.
Due to the pandemic, National Healthcare Decisions Day (NHDD), which is always the day after Tax Day, is doing a reboot or a second round – a 2.0. Since Tax Day was moved to July 15, NHDD is moving to July 16. NHDD has always used the “death and taxes” slogan to remind people to complete or review their advance care directive.
On the Center for Practical Bioethics website, we’ve made it easy to host an NHDD health fair-type event at your hospital or organization with your choice of two marketing kits.
If you’re an individual who hasn’t completed your advance care directive, we offer a free download from our website of our workbook in English or Spanish. 
Whether you are an organization or an individual, you can call us anytime if you have questions or need guidance on advance care directives.
So 2020 is scary and much of what’s happening may be uncontrollable, but hosting an NHDD event or filling out your directive can be an easier accomplishment in 2020 with the Center’s resources.

Written by Monica Delles

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Thursday, September 5, 2019

Advance Care Planning and the Legacy of Dr. Richard Payne

The African American Advance Care Planning Palliative Care Network is the brainchild of the late Dr. Richard Payne, a man of great honor and distinguished character. I’ll always remember being introduced to him, initially by phone in 2006, when I was working on my Master’s in Social Work. My thesis was on African Americans at the end of life and I wanted to ask Dr. Payne if I could reference his work. He not only said yes but also became a mentor to me. I had the opportunity to work with him on multiple projects. 

Dr. Payne’s exemplary leadership was always balanced with his love for his family and his fellow man. I believe that God graced my life for 12 precious years to work with Dr. Payne and to become friends with him and his devoted wife, Terrie—the love of his life.

Our first Network meeting in Durham was indeed sacred. I learned that the meeting room where we gathered at Duke University’s Divinity School was the same place where Dr. Payne had first spoken on the topic of AA-ACP. We felt an air of peace and solidarity of mind for the work at hand—the right place, the right time, and for the right reason. Sacred indeed.

I believe I speak for us all in the Network when I say that we are committed to advancing equitable healthcare and service delivery to the most vulnerable persons in our society. I am honored to be a part of that mission. As we move forward in furthering the work of the AA-ACPN, we also continue the monumental legacy of Dr. Payne’s incredible lifework and vision.


GLORIA THOMAS ANDERSON, PhD, LMSW
Advance Care Planning & Health Living Through Faith
African American Advance Care Planning Palliative Care Network member

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Monday, February 15, 2016

Death with Dignity?

Tarris Rosell, PhD, DMin


What Kansans Need to Consider about House Bill No. 2150

(“The Kansas Death with Dignity Act”)

How would you answer the following question if a Gallup pollster asked?

When a person has a disease that cannot be cured and is living in severe pain, do you think doctors should or should not be allowed by law to assist the patient to commit suicide if the patient requests it?

As of mid-2015, nearly 7 out of 10 Americans polled answered that question, “Yes,” including 48% of those who attend church weekly. The vast majority of Americans, and 81% of young adults ages 18-34, currently favor physician-assisted suicide (PAS). Are they right? Could that large a majority possibly be mistaken?

Kansas legislators, like those in most states, have had opportunity to consider making PAS legal. It is already legal, with restrictions and regulations, in several other states, most notably Oregon, Montana, Vermont and Washington, and as of this year California. The addition of California now makes the question relevant to 1 in 10 of all Americans. The 1994 Oregon “Death with Dignity Act” served as the model in California, and also for Kansas House Bill No. 2150, introduced last year. No hearing was held.

Governor Jerry Brown, a Catholic Christian, recently signed that CA legislation after much thought. Kansas Governor Brownback, also a Catholic, seems unlikely to sign such a bill even if it were to get out of committee and garner enough support to get through both chambers of the Kansas legislature. Is this good public policy? Or are we wrong-headed in the Heartland?

One of the influences credited with raising Gallup percentages especially among young people was the physician-aided death of 29-year old Brittany Maynard.

Brittany was living in California when diagnosed with glioblastoma multiforme, an aggressive form of terminal brain cancer. After much research and discussion, Brittany decided to move with her husband and mother to Oregon so as to qualify for that state's "death with dignity" protocol. After establishing residency and meeting with physicians, Brittany received her lethal prescription of drugs, to be used or not at the recipient's will. If taken as a means to end life, Oregon law specifies that the drugs would need to be taken by Brittany's own hand. No one could do it for her.



Upon experiencing multiple seizures and cancer-related pain, Ms. Maynard decided to take a lethal dose of medications prescribed for this purpose, and thereby end her life on November 1, 2014. Close family and friends accompanied her at the time of departure. It was said to have been a peaceful death. Was it a "death with dignity?"

In a dialogue group I attend monthly, involving mostly physicians and chaplains, the Brittany Maynard case was discussed after viewing a six-minute YouTube video posted by Brittany prior to her death. I have facilitated discussion of this case with groups of seminarians and medical students, also. Each time, I poll the participants on their opinion of PAS. Regardless of the group, percentages mirror those of Gallup. So should the majority rule in Kansas on this matter?

A hospice physician friend suggested that Brittany Maynard might have utilized palliative care in hospice. He acknowledged that this could not guarantee a death without pain and suffering, but that hospice care places value on a dying patient’s dignity. Indeed, most surely do, and most hospice deaths seem relatively peaceful. This is what I, and most bioethicists I know, advocate rather than expanding access to PAS. It may well be that the American majority has been misled, and that the better way to achieve death with dignity is to promote palliative and hospice care—especially for those groups who don’t have access to comprehensive care. But really, for all of us.

Brittany and at least 859 other terminally ill patients in Oregon over the course of the last 15 years or so, have chosen a different route to their deaths. Even in Oregon this remains a remote event, affecting only about 3 deaths in 1,000. I don’t condemn them nor their assisting physicians. Condemnation gets us nowhere good. I urge thoughtful and respectful ethics dialogue instead.

I advocate for better advance care planning, earlier end-of-life conversations between patients and their physicians, and more robust discussions about goals of care in advance of health crises. Increased public funding seems necessary so as to train more palliative care and hospice physicians. More research, and research funding, is needed for rigorous evaluation of the care currently being provided to dying patients.

This seems to me the better path to death with dignity, not only in the Heartland but everywhere.

How does it seem to you?


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Tarris Rosell, PhD, DMin, is the Rosemary Flanigan Chair at the Center for Practical Bioethics.

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