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?

RESOURCES:

• http://kslegislature.org/li/b2015_16/measures/documents/hb2150_00_0000.pdf
• http://www.gallup.com/poll/183425/support-doctor-assisted-suicide.aspx
• http://www.gallup.com/poll/171704/seven-americans-back-euthanasia.aspx
• https://www.youtube.com/watch?v=1lHXH0Zb2QI
• http://thebrittanyfund.org/category/videos/
• http://www.washingtontimes.com/news/2014/oct/31/oregon-womans-assisted-suicide-decision-sparks-deb/?page=all
• http://www.wsj.com/articles/a-doctor-assisted-disaster-for-medicine-1439853118
• https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf
• http://www.deathwithdignity.org/access-acts

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

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. 

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.