Tuesday, April 14, 2015

LIVING WILLS, GREYHOUNDS AND GOALPOSTS

National Healthcare Decisions Day – April 16, 2015

By John G. Carney, MEd, President and CEO
Center for Practical Bioethics


For years, I’ve been curious to know whether people fail to complete living wills and avoid naming a healthcare agent out of procrastination or a false sense of confidence that they have plenty of time to do it later.

Reality is, if you don’t do it when you don’t have to, it’s not likely to go well when you do. Naming someone during a time of crisis to speak on your behalf can be downright cruel, especially when you’ve not shared much about the things that are really important to you.

Share What’s Important

What are those things? Well, they aren’t scary or monumental. They include things like how important laughing, talking, sharing and “just being” are to you. Don’t get all tied up in feeding tubes. Instead think about what sharing a meal means to you. Is it a means to an end or an end in itself?

I once shared a house with an older-than-me bachelor and swore when he ate at home he never cooked anything that didn’t come in a box and could go in a microwave. I, on the other hand, started just about every meal sautéing fresh onions and garlic in olive oil. Food had entirely different meanings to us, and that became starkly evident to me when we talked about his dad’s early onset Alzheimer’s and how differently he approached the question of feeding tubes when the difficult question arose in his family.

So stop worrying about a tube in every orifice! Instead think about the sharing what you want more than anything – even at the end. Don’t obsess about completing a living will (aka healthcare directive) to the point that it paralyzes you from acting. Instead, take the time to share with someone who loves and cares for you what’s important to you as you think about life in general and especially its final stages. Focus on the positive - the most fulfilling aspects of your life. This isn’t a “bucket list” of items to do, but rather a sharing of values and convictions. What do relationships, solitude, faith, nature, self-expression and art, work, music and family mean to you?

Then, when that’s all done, ask that person to be your agent. And then promise that person that you’ll do it again in a year or two down the road – or whenever you have a major event in your life – from the birth of a child to the diagnosis of a serious illness. Life happens and, while our wishes and dreams may alter, you’ll be comforted by the fact that values – real bedrock beliefs about life and love – pretty much stay the same. But don’t assume even those close to you know all that.

Recognize Greyhounds and Goalposts

Over the years I’ve learned about two very important syndromes that all of us deal with differently. One is called the “Greyhound Syndrome.” It’s the phenomenon that sometimes we experience a great freedom of anonymity sitting next to a perfect stranger (on a bus traveling cross country) and share our deepest thoughts more freely than we do with those we’ve shared a lifetime with. Hospice volunteers can regale you with stories they’ve heard, never to share again, by a dying patient. These are not necessarily dark secrets of our past so much as unvoiced hidden treasures. Some are worth sharing before we die; others are worth taking to the grave. Think about which is which.

The other syndrome is what’s called “Moving Goal Posts.” This phenomenon deals with how some future state or health condition may appear unacceptable at one point in our lives and much more acceptable at another. That’s why checking boxes and lists on living will forms doesn’t work for people in states of relative good health. But stories, treasured thoughts, values and convictions work at every level.

Have a Caring Conversation Today

So take a leap and share your stories with someone you love. And, this April 16, on National Healthcare Decisions Day, have a caring conversation. Name an agent. Start talking about what matters most and don’t make it a somber depressing discussion. Think about it as a gift to those you love that will lead to peace of mind – for you and them. Because it likely will – far more likely than leaving it to chance. Close to 85% of us will have to rely on someone else to make our final wishes known. 

If you need help getting started, we’ve got a little booklet that will help you do just that. Download a free Caring Conversations workbook or order a printed version from the Center for Practical Bioethics’ website.

Seize the moment and turn what you thought was morbid and ghoulish into the marvelous and glorious. You may just discover something about a loved one that will serve you both in the moment and for a lifetime.

Monday, April 13, 2015

Gratitude for Rev. Gardner C. Taylor

Remembered by Dr. Robert Lee Hill, Senior Minister
Community Christian Church, Kansas City, Missouri

When a comprehensive American religious history of the 20th century is finally compiled, the magisterial preaching eloquence of the Rev. Dr. Gardner C. Taylor will be remembered with astonishment and abiding, awe-struck admiration. Dr. Taylor died on Sunday, April 5. He was 96.

For more than 70 years, Dr. Taylor held forth among African American Baptists and a panoramic array of religious adherents throughout the United States and around the world as an orator with few if any peers.

MLK’s Favorite Preacher

As the pastor of the Concord Baptist Church of Christ in Brooklyn, New York, for 42 years, and afterwards in retirement, Dr. Taylor engaged the issues of his community, the nation and the world with passion, insight and effectiveness. He artfully combined the necessary durative dynamic of transcendence with the equally necessary punctiliar character of incarnation.

With Martin Luther King, Jr., who called Dr. Taylor his “favorite” preacher, he helped found The Progressive National Baptist Church in order for congregations to better address and overcome the ravages of racism and segregation in the U.S. Working from the North, he led the Concord church and many other congregations to raise funds for Dr. King’s efforts in the South.

Dr. Taylor also served on the New York City Board of Education and was always involved in issues that arose in the “public square” of Brooklyn and greater New York. In his later years, Dr. Taylor worried that many religious leaders and their congregations had lost their “prophetic edge” and might fall into the trap of merely mirroring a consumeristic culture.’’

Compassion Sabbath in Kansas City

Whenever he spoke and wherever he travelled, Dr. Taylor dealt with ethical issues and matters of public significance, including when he came to Kansas City.

The Center for Practical Bioethics will remain abidingly thankful for Dr. Taylor’s presence in Kansas City in 1999 at the launching of “Compassion Sabbath,” which engaged more than 80,000 faith community leaders and members in hundreds of congregations in an interfaith initiative to increase the quality of care for those facing the end of life. At a breakfast gathering at Union Station, he spoke compellingly of the need for honesty and compassion in relation to the experience of debilitation and pain at the end of life.

During the time of a sabbatical journey in 2010, I was privileged to share a long interview/conversation with Dr. Taylor in his home in Raleigh, North Carolina. In retirement, Dr. Taylor echoed in his meditations what he put forth as a preacher, pastor, and activist for the betterment of humanity. Well into his 90's, Dr. Taylor spoke plainly and with swift clarity about the process of aging. When asked about what he prayed for, he said his personal prayers were "to get out without too much pain." And he added, with a chuckle, "And I'm ready to get out, I'm ready to go."

People in the pew, the academy of homileticians, and awe-struck fellow clergy regarded Dr. Taylor as a singular personality whose like only comes around once every century or so. We would agree and only add that we’re so glad that he came to Kansas City to share his extraordinary voice for the intertwining for what is “good” and what is “right.”

Note: The Kansas City Star published an article about Dr. Gardner on April 11, 2015, describing his pulpit as “the most prestigious in black Christendom.”

Thursday, April 9, 2015

Do Your Little Bit of Good: National Pain Strategy Comment Period Ends May 20

Do Your Little Bit of Good:
National Pain Strategy Comment Period Ends May 20


2.2 Create a comprehensive population health-level strategy for pain….
(Complete before the end of 2012)


In June 2011, those of us who served on the Institute of Medicine’s committee that published Relieving Pain in America sent our report to Congress. It included sixteen recommendations to improve care for at least 100 million Americans who live with chronic pain. It provided what we referred to as a blueprint to “transform the way pain is perceived, judged and treated.”

Our first recommendation (2.1) was to “improve the collection and reporting of data on pain.” We had all been dismayed to learn how little reliable data we actually had to draw from in our process. The second recommendation (2.2) was to “create a comprehensive population health-level strategy for pain prevention, treatment, management, and research. Our “blueprint” was fundamentally a timeline which sequenced our recommendations. We ranked the population health-strategy as our first priority and asked that it be completed within 18 months, i.e., by the end of 2012.

It has been my privilege to serve on the National Pain Strategy Oversight Committee, which was charged by the Department of Health and Human Services (HHS) with developing the plan called for by the IOM. Unfortunately, that charge was not issued until the end of 2012 and the process took much longer than we had anticipated. The committee’s work was completed last summer and then it entered the vetting process. The good news, however, is that last week the National Pain Strategy Report was posted in the Federal Register. Until May 20, 2015, recommendations and comments from the public are possible.

We wish to strongly encourage all of those interested in efforts to improve chronic pain care to review this document and share your thoughts about it. You can do so by going to -
https://www.federalregister.gov/articles/2015/04/02/2015-07626/draft-national-pain-strategy

The report is only 43 pages and is organized in six sections: 1) Population Research, 
2) Prevention and Care, 3) Disparities, 4) Service Delivery and Reimbursement, 5) Professional Education and Training, 6) Public Education and Communication.

Each section contains a statement of “the problem” and then provides objectives and strategies for remedying that problem. From my perspective, some of the Report’s most important objectives are to:
• Foster the collection of more and better data for all populations, including developing metrics for measuring progress. (Good solutions always start with good facts.)
• Determine and analyze the benefit and cost of current prevention and treatment approaches and create incentives for using those treatments with high benefit-to-cost ratios. (Get the biggest bang for the buck.)
• Develop standardized and comprehensive pain assessments and outcome measures intended to increase functionality. (Move beyond 1-10 pain scales.)
• Acknowledge and address biases in pain care. (Biases that are implicit, conscious or unconscious.)
• Demonstrate the benefit of inter-disciplinary, multi-modal care, including behavioral health, for chronic pain. (Pain is a complex issue that requires complex solutions.)
• Align reimbursement with care models that produce optimal patient outcomes. (Both public and private payers are critical to reform.)

Perhaps, most important of all, however, is to improve health literacy, communication and education about pain among patients, healthcare providers, policy makers and the public. 

More than 80 pain and policy experts from across the country volunteered their time to develop this report. Many others in federal agencies have also been involved, and all agreed to the following vision:
If the objectives of the National Pain Strategy are achieved,
the nation would see a decrease in the prevalence across the
continuum of pain, from acute, to chronic, to high-impact
chronic pain, and across the life span from pediatric through
geriatric populations, to end of life, which would reduce the
burden of pain for individuals, families and society as a whole.
Americans experiencing pain – across the broad continuum —
would have timely access to  a care system that meets their
bio-psychosocial needs and takes into account  individual
preferences, risks, and social contexts.  In other words they
would receive patient-centered care.


Further Americans in general would recognize chronic pain  
as a complex disease and a threat to public health and a just
and productive society. 


All those involved in developing the report are committed to getting it right, and to do so, it is critical that people living with chronic pain, their families and those who care for them (especially primary care providers) provide input and feedback. To paraphrase Bishop Desmond Tutu, “Do your little bit of good…. It is those things put together that change the world.”


https://www.federalregister.gov/articles/2015/04/02/2015-07626/draft-national-pain-strategy


Wednesday, April 1, 2015

It is Time to Ditch Pain Scales

Western medicine is in large part based on objective evidence. If you can’t see, touch, taste or weigh it, it simply does not exist. Unfortunately, pain is subjective, with no “litmus test.” Each individual’s pain experience may vary depending on one’s genes, culture and/or world view, including religious beliefs.
Pain scales were an attempt by well-meaning people to address this problem. The idea was that if a mechanism were devised to make pain more comprehensible, less subjective, not quite so “slippery,” people with pain would get better care. And, at the same time, those who care for them could be more confident that they were doing the right thing when prescribing medications that have serious side effects, including addiction and unintended death. Pain scales also helped assure providers that they were treating people fairly — without regard to age, race, ethnicity, etc. - so that a person with a pain score of seven would be treated like any other person with a pain score of a seven.
Unfortunately, this grand experiment has not worked.

Although today pain is assessed far more often than it was before pain was labeled the 5th Vital Sign and pain scales were devised, there is significant evidence that pain care is no better than before.
On March 30, an article by Amy Dockser Marcus appeared in the Wall Street Journal titled, “In search of a better definition of pain.” In it, Tamara Michael, a 45-year old women who lives with chronic pain due to Multiple Sclerosis, describes work she has done with a group of researchers to come up with a better way to assess patients’ needs for pain control. They have come up with a narrative assessment based on functionality, i.e., a person’s ability to do activities of daily living (ADLS) – things most of us take for granted like the ability to dress ourselves, prepare a meal, or drive a car.
I applaud Ms. Michael and the researchers working with her and others in the article who commented on the need for a better mechanism to accomplish the goals that motivated those who developed the Pain Scale. However, I think there is a bigger issue here than what assessment tool we use and that is the stigmatization of those who live with chronic pain, which has led to the erosion of trust between healthcare providers and those who live with chronic pain.
Pain patients are often characterized as “drug seekers,” malingerers, lazy and told that their real problem is “all in their head.” They are also seen as putting those who care for them and prescribe pain medications at risk of scrutiny by state medical boards, as well as local, state and federal law enforcement agencies. Although pain is the number one reason people seek medical care and the desire to address pain and suffering is what “calls” most people to the healthcare professions, we are at a “medical impasse.” Doctors feel threatened by their patients, and those living with pain feel abandoned by their physicians.  
So, how do we find our way out of this quagmire? The Institute of Medicine report, Relieving Pain in America, published in 2011, called for a “cultural transformation in the way pain is perceived, judged and treated.” It also called for a shift from a biomedical to a bio-psychosocial pain management models, i.e., an approach that provides access to multi-modal treatment that could include medications and interventional procedures, but also access to counseling and behavioral health, physical therapy and exercise, diet and nutrition counseling, chiropractic care, acupuncture, massage and other complementary and alternative treatments. Bio-psychosocial approaches are both comprehensive and individualized. 
In 2015, a National Pain Strategy Report, which is an effort to operationalize recommendations made in the IOM report, will be published. I am hopeful that it will serve as the springboard for the “cultural transformation” called for in the IOM report. However, I believe that, until the loss of trust between pain patients and healthcare professionals is restored, it will have little impact, and from my point of view, the only thing that will restore that is communication – respectful communication.
I was in the hospital recently and noticed that at the foot of my bed was a whiteboard that told me the name of the hospitalist, the nurse and the nurse aide on duty. It also included a 1-10 pain scale printed right on the board, including little happy-to-sad faces for patients who do not read. When one of my daughters saw it, she said, “Wow! Mom, the pain scale is printed right on the board. That ought to make you feel great.” Unfortunately, it did not. It made me think about how difficult it will be to undo the 1-10 Numeric Pain Scale and to put in its place a more patient-centered approach, like the one reported in the Wall Street Journal, or an even simpler, more humanistic approach such as physicians asking, “How are you today?” Then listening to and respecting the patient’s response. 

Written by Myra Christopher
Kathleen M. Foley Chair in Pain and Palliative Care

Learn more at http://www.practicalbioethics.org