Saturday, February 13, 2016

Never Too Young to Plan Beyond

Laura Troyani
Founding a company that encourages informed end-of-life decision-making and conversations, while certainly not unique, is uncommon. Founding it as a relatively healthy 30-something without a medical background may put me in the category of not only uncommon but unusual.  

And yet, given my conversations with professionals who deal with late-in-life and end-of-life issues, I was inspired to do so. Those conversations led me to create PlanBeyond, a new online site that helps older adults and caregivers get better educated about end-of-life medical, legal, and financial issues.

In speaking with a diverse group of professionals – from palliative care doctors, hospice care nurses to estate liquidators, estate planning lawyers and even funeral directors – I was surprised that my conversations really coalesced around one core issue: Many of the burdens they see with family members could be significantly lightened if people were just a little more proactive about exploring their final wishes and did a better job of communicating them.

Sad But Not Unusual   


Consider the story that a nurse from Illinois, Anne, shared with me. A father of two was in the intensive care unit for weeks after suffering a severe stroke. His prognosis was poor, but his wife had no idea if she should keep his feeding tube in or when to consider withdrawing it. Because they were both relatively young, neither had spoken to the other about this possibility nor had either of them completed a living will. And so here she was, a mother of two young children, relatively young herself, having to face one of the most important decisions in this man’s life…without any guidance. 

Or, consider the story of a funeral director from Georgia, John, who recounted a story of a widow planning the burial of her husband of over fifty years. She was desperate to keep costs as low as possible. Neither she nor her family had the resources to cover the cost of a standard funeral with burial. And yet, she wanted to do right by her husband. She was torn and guilt-stricken by the two options presented – cremation at a lower cost or borrowing to pay for a more expensive conventional burial. What would her deceased husband want?  The widow had never spoken with her husband about his wishes, so it was up to her to make this very personal and very difficult decision. 

Inspired to Help


I wish I could say these stories are rare, but I am discovering they aren’t. In my brief experience in this new venture I am having confirmed over and over again how important it is to explore and share a whole host of issues. With just a little research, planning and open communication about our final wishes, we can change what are often heart-wrenching decisions into ones that we accept and are at peace with. 

It’s why I was inspired to found a company that’s all about this issue, and why I encourage anyone I speak with to think just a little bit about their final weeks of life and what they really want done with them. 



Blog Editor’s Note:
Writer Laura Troyani is the founder and editor of PlanBeyond, an online site for getting common legal, financial, health and end-of-life planning issues in order and stored in one place. An increasing number of groups, many started by younger people, share Laura’s passion. Examples include My Directives and Annie Presley and Christy Howard’s new book, Read This…When I’m Dead


The Center welcomes Ms. Troyani’s contribution to the Center’s blog, emphasizing the importance of making wishes known before a crisis occurs; however, publication of her article should not be interpreted as the Center’s endorsement of PlanBeyond site contents. For recommended documents to make your healthcare wishes known, the Center encourages readers to download free copies of Caring Conversations from the Center’s website

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Monday, February 1, 2016

TOUGH CASES: Code of Ethics Now Available for Healthcare Ethics Consultants

Tarris Rosell, PhD, DMin    
Consider the following hypothetical case scenarios:

Case #1

Jessica, APN, is a member of the Hospital Ethics Committee and serves also on the HEC’s ethics consultation team. Each week, one of eight volunteer consultants takes first call on the dedicated Ethics pager. Two other team members serve as back up to the on-call ethics consultant. 

One day, a consult request is forwarded to the Ethics pager, which Jessica is carrying. It involves a patient on the Medical ICU where Jessica is also a nurse manager. She knows the patient and family, and is all too aware of their conflicted situation with hospital staff regarding goals of care. Jessica also supervises the nursing staff, which rotates care duties on Patient Joe so as not to get too burned out, given his dementia-related raging and flailing. As Jessica reads the ethics consult order, she feels conflicted about her multiple roles in this challenging situation. She wants to be of assistance for ethics, but isn’t certain that she can do so without confusion about what “hat” she’s wearing up on the unit.

What ought Jessica to do, and how would she know?

Case #2

Jonathan, PhD, is taking first call on the Ethics pager this week. One of three consult requests received involves a very messy situation involving a difficult discharge. The 56 -year old female patient, Helen, is homeless and had come to the emergency department weeks earlier in a police cruiser.

At the point when she becomes medically stable, a dilemma is encountered. How could we safely discharge this patient back to the street where she insists on going “if,” as she says, “you won’t let me stay here?” It’s cold outside, and Helen is barely ambulatory, with some signs of dementia. Follow-up self-care would require daily insulin injections and finger sticks for glucose monitoring. While the patient claims ability to do so, the attending isn’t convinced. 

Ethics is consulted, and Jonathan convenes a multi-disciplinary care meeting, including the patient. Consensus eventually is reached on a discharge plan. Helen agrees to go to a homeless shelter with a clinic. 

However, after leaving the hospital, the cab driver lets her off at a downtown intersection instead, as directed by his rider. It is a blustery and frigid winter day. Helen is wearing the thin autumn coat and sandals she had been wearing upon admission. A newspaper journalist happens to stop at the intersection where Helen stands shivering, and notes her hospital bracelet. He rolls down the window and asks if Helen is okay. She mutters that City Hospital left her off here to die. The journalist calls 911, and then makes a call to the hospital operator asking to speak with someone in Ethics. 

When Jonathan receives this page and phone call, what should he say, or not say, to the journalist, and how would he know?

Code of Ethics 

Ethics consultation, like any other professional practice in healthcare, requires professionalism of the consultant. Ethics consultants can either help or hurt those who request assistance. Sometimes even life and death hang in the balance, especially when it is unclear as to which of those two options would be the worse outcome for a critically ill patient. Always there is confidential information to be handled with care and in compliance with HIPAA rules. 

Ethics professionalism matters.

Until recently, healthcare ethics consultants familiarized themselves with the codes of ethics pertaining to other professions, but had none of their own. Jessica and Jonathan might have discerned successfully what they ought to do about their professional ethics dilemmas in the scenarios described. Now their decisions may also be guided by a code of ethics and responsibilities drafted specifically for healthcare ethics consultants.

The American Society for Bioethics and Humanities has posted A Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants as a downloadable document at http://asbh.org/publications/books. The document lists seven ethical responsibilities for healthcare ethics consultation (HCEC):

1. Be competent.
2. Preserve integrity.
3. Manage conflicts of interest and obligation.
4. Respect privacy and maintain confidentiality.
5. Contribute to the field.
6. Communicate responsibly.
7. Promote just healthcare within HCEC.

Each of these responsibilities is explained in the ASBH document, with illustrative examples provided. 

Applying the Code

In Jessica’s case, she might recuse herself from ethics consultation on grounds of #3, the need to manage conflicts of interest and obligation. One of her back-up consultant colleagues can be called upon to respond instead. 

Jonathan would be guided in his own ethics dilemma by responsibilities #4 and #6 especially, and possibly #7. The probably well-intended journalist may benefit from clarification of the situation with Helen; but any communications with him must be done responsibly, perhaps by a designated hospital spokesperson, and with HIPAA-protected privacy ensured both for the patient and her healthcare providers.

Center for Practical Bioethics personnel contributed to the development and publishing of the ASBH Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants. It is currently being utilized in hospitals in Kansas City and elsewhere for professional performance improvement toward the goal of excellence in ethics consultation.


Tarris Rosell, PhD, DMin, is the Rosemary Flanigan Chair at the Center for Practical Bioethics. He also serves as Co-Chair of the Hospital Ethics Committee and Director of the Ethics Consultation Team at the University of Kansas Hospital.

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Tuesday, January 26, 2016

New Program Will Bring Advance Care Planning to African-American Faith Communities

Richard Payne, MD

Participating Congregations in Atlanta, Chicago, Dallas, Houston, Kansas City, Philadelphia and West Palm Beach 


African Americans die at excessive levels from chronic disease1 yet use only eight percent of hospice services nationally.2 Advance care planning – the process of communicating with a healthcare agent about the care they would want if unable to speak for themselves – and increased use of hospice services could greatly improve quality of life for one of the most vulnerable populations in America, elderly African Americans. 

A new project funded by the John and Wauna Harman Foundation and others will enable the Center for Practical Bioethics to implement a two-year program working with African American faith communities and community collaborators (i.e., hospices) in four cities to increase advance care planning and use of hospice services. Cities include Atlanta, Chicago, Dallas,  Kansas City, Philadelphia, and West Palm Beach.

The rationale for the program is rooted in American history and culture. Many African Americans distrust our healthcare system – which once practiced segregation, involuntary sterilization and unethical research practices – and are understandably reluctant to engage in a process that they perceive could put them at greater risk of being underserved. African Americans are also markedly more religious than the U.S. population and more reliant on faith leaders to help them make healthcare decisions. 

The project, launched on December 1, 2015, includes four phases:

Phase I – Congregations in targeted cities will recruit two-to-three Advance Care Planning (ACP) Ambassadors to commit to a six-month advance care planning program. Project faculty and staff from the Center for Practical Bioethics and partners will hold a four-hour training session for ACP Ambassadors at the Samuel Dewitt Proctor Leadership and Lay Conference in Houston on February 15-18, 2016.

Phase II – ACP Ambassadors will design and implement a project to facilitate and complete advance care planning documents in their congregations. Faculty and staff will provide coaching and advice on how to teach their congregants about advance care planning, encourage them to discuss their end-of-life care with their loved ones, and assist them in completing advance care planning documents.

Phase III – Faculty and staff will work with ACP Ambassadors and their community collaborators to organize a one-day Crossing Over Jordan Conference in November 2016, where  the Ambassadors will share their project design and outcomes with the community. 

Phase IV – This phase consists primarily of post-project tracking. Faculty and staff will develop and conduct ongoing surveys of participating congregations for one year following the conclusion of local advance care planning projects to track the project’s impact.

For more information about the project, please contact Leslie McNolty, Program Associate, lmcnolty@practicalbioethics.org or 816-979-1394.





2 National Hospice and Palliative Care Organization’s Facts and Figures: Hospice Care in America, 2014 Edition, p. 5.


Richard Payne, MD, is the John B. Francis Chair at the Center for Practical Bioethics and the Esther Colliflower Professor of Medicine and Divinity at Duke Divinity School, Duke University.

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Tuesday, January 12, 2016

DEATH PANELS BACK IN THE NEWS

John Carney

At Least in the Land of Oz for People with Hepatitis C


Death Panels are back in the news, at least in the Land of Oz (i.e., Kansas). This time the target seems to be assigned to a group of conservative legislators from Kansas recommending that patients in need of expensive medications for an infectious disease should be denied them if they don't adhere to their regimens or follow physicians recommendations regarding lifestyle changes. 

During the special hearing conducted by the KanCare Oversight Committee on Tuesday, December 29, the Committee approved (by voice vote) a resolution not to cover the cost of the medications for noncompliant patients. Two members of the Committee strongly objected to the Committee’s recommendation, The Wichita Eagle reported.

A week later on Tuesday, January 5, Ron Sylvester of the Hutchinson News assigned the Death Panel” label to the legislators’ effort in publishing this editorial.

Ironic how the tables have turned. The original Death Panel label was assigned to a non-existent provision in the Affordable Care Act. While we can hope this claim to be apocryphal as well, it deserves to be examined as did the one in 2009.

Provider-Patient Relationship Interference


Hepatitis C medications work, but they are expensive. People who have the disease are often subject to stigmatization because of the infectious nature of how the disease is usually transmitted. Often, people harbor the illness in a dormant state for years and are never tested. Many may transmit it unknowingly through a variety of ways, including contaminated needles. In some cases, however lapses in infection-control procedures are at fault, such as those that occur through manicures, pedicures, piercing, tattoos and sports. To learn more click here.   

One might raise the ethical question as to why legislators need to weigh in on an issue that seems pretty clear to be part of the relationship between provider and patient. Should we begin denying coverage for oxygen to patients who continue to smoke or deny diabetes meds to patients who don’t follow prescribed diets? All of these patients bear personal responsibility. Some comply, some don’t, some struggle and fail. Alternatives may need to be identified, but why can’t we leave that to practitioner and patient? Withholding life-saving treatment for a patient who hasn’t complied may be a challenge for the healthcare team and the patient, but is it a reason to abandon the patient’s coverage? Could it be the high cost of the medication or the mode of transmission that policy makers find objectionable part?  

Alternatives to a Slippery Slope


Personal responsibility and the relationship between physicians and patients should not be turned into a series of ultimatums. Denying proven treatments for a disease by legislative fiat (regulatory or statutory) because of a failure of personal responsibility eventually leads us to the point where a likely failure of “lifestyle” or “behavior” bodes ill for every last one of us 

The Panel's recommendation needs to be "put to rest" before it has a chance to hasten a patient's death. We need to bury the whole concept of Death Panels across the political, ideological and healthcare spectrum.

Discussing and exploring ways to engage non-adherent patients is a worthy enterprise, but we’ve got to be more imaginative and innovative in our ways to achieve health outcomes than cutting off a lifeline because the patient can’t behave in an “acceptable” manner.  



John G. Carney is the president and CEO of the Center for Practical Bioethics.

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