Wednesday, July 5, 2017

Personalized Medicine: Our Future or Big Data Voodoo?

Kumar Ethirajan, MD
NOTE: Kumar Ethirajan, MD, an oncologist specializing in cancer genetics in the Kansas City area since 1993 and member of the Center for Practical Bioethics’ board of directors, will present this topic as part of the Center’s BIOETHICS MATTERS lecture series on Wednesday, July 19, 7:00 pm, at the Kansas City Public Library Plaza Branch, 4801 Main Street, Kansas City, MO. Bring your perspectives, questions and personal stories. Admission is free. All are welcome. 

Personalized medicine has the potential to revolutionize medicine. Actually, that’s not true. Personalized medicine IS REVOLUTIONIZING medicine. 

Personalized medicine IS our future! Yet, based on a 2013 survey by GfK, a global consumer research firm, just 27% of people have heard of the term personalized medicine and, of those, only 4% understand what the term means.

You may have heard personalized medicine referred to as genomic medicine, precision medicine or individualized medicine. Whatever you call it, it’s medicine that uses information about your genes to prevent, diagnose and treat disease. In cancer, it’s about using information about a tumor to discover certain biomarkers or genes and, hopefully, having a drug to treat it. So far, researchers have discovered more than 1800 disease genes, created more than 2,000 genetic tests for human conditions, and have 350 drugs currently in clinical trials.

So, this is great, right? Yes. But consider that some 30% of the world’s stored data is generated by the healthcare industry – and that a single patient on average generates 80 megabytes per year! With healthcare data exploding like this, shouldn’t we be thinking about the questions it raises? For example:
Who owns your genetic information and who should have access to it? Does the abnormal biomarker discovered by a testing company data belong to you or the entity that discovered it? 
Is your information secure? Can it be used against you? Is de-personalization the answer? Is one layer of de-personalization sufficient?
And what if you have your genome sequenced and it reveals some abnormality related to a currently incurable or even untreatable disease? Do you want to know?

Perhaps the first step in benefiting from this revolution is to educate ourselves. Good ethics and good medicine start with good facts. Learn more about what personalized medicine is. What’s the promise? What’s the hype? 

A good place to begin is this article in Genome Magazine. A good opportunity to learn more is at a program presented by Kumar Ethirajan, MD, a member of the Center for Practical Bioethics’ board of directors, on July 19, 7:00-8:30 pm at the Kansas City Public Library Plaza Branch. Admission is free. Reservations requested.

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Monday, June 12, 2017

World Elder Abuse Awareness Day (#WEADD)

Kathy Greenlee,
Vice President for Aging and Health Policy

Why I Am Tired and Inspired

Kathy Greenlee is the Vice President for Aging and Health Policy at the Center for Practical Bioethics. She previously served as the U.S. Assistant Secretary for Aging and Administrator of the Administration for Community Living from 2009 to 2016. She will be the keynote speaker at “A Conference on Elder Rights and Protection” in Maui, Hawaii on June 15, 2017, World Elder Abuse Awareness Day.

The United Nations recognizes June 15 as World Elder Abuse Awareness Day. Started in 2006 by Elizabeth Podnieks of the International Network for the Prevention of Elder Abuse, the day has become an international opportunity to highlight the global problem of the abuse of older people.

During my tenure as U.S. Assistant Secretary for Aging, I had the honor of observing “World Day” in venues as exotic as the White House and the United Nations Headquarters in New York City. The problem of abuse of the aged is ubiquitous. It happens in every corner of the world, in every culture. Unfortunately and outrageously, it happens to one out of every 10 older adults in the United States.

The impact of abuse can be immediate, such as a sudden punch or a sexual assault. It can develop over time, as is the case with older adults who are neglected and allowed to languish, decline and die from the horrible circumstances that accompany the failure to receive care. Elder abuse can be caused by family members who strike out because of stress, anger or greed. It can be perpetrated by strangers who befriend older people on the telephone or through the internet or who come through the front door. Criminals prey on the cognitive decline associated with advancing age and the presence of dementia.

Reasons to Be Tired 

I became aware of the scourge of elder abuse over 25 years ago when I worked in the Office of the Kansas Attorney General as a young lawyer. In many ways, I have grown up with this issue as a professional. Four aspects of the issue – euphemisms at best and excuses at worst -- continue to motivate and anger me.

1. I am tired of calling elder abuse “scams.” I have not set out to banish the word. But it’s simply not strong enough. These aren’t scams, they are crimes. Older people aren’t tricked, they are exploited. They aren’t stupid, they are scared. By referring to the targeting of older people as scams, we fail to warn sufficiently. We need to do a better job of telling people: When you get old, people will target you and some will try to hurt you. Be aware, be informed and be careful.

2. I am tired of ageism. One of the root causes of abuse is the societal devaluing of old people. Older adults are dismissed, talked down to, ridiculed and, most tragically, ignored. Despite the overwhelming presence of older people in society, on an individual level, older people become invisible. We stop seeing them and we lose them. And in the shadows of their isolation, criminals prey.

3. I am tired of talking about older adults when we should be working with them. I feel strongly that the greatest deficit in the field of aging is the lack of presence of older people themselves. In 1984, I was trained as a volunteer in a domestic violence program. The domestic violence movement in this country was started by formerly battered women. The same can be said about the work against sexual assault. Rape survivors lead the way by bravely speaking out. This is not the case with the work to end elder abuse. The champions in this work are people just like me, professionals who are angered to the point of action and have been for years. We need to provide support and seek opportunities for older people to address the problem of abuse directly and publicly.

4. I am tired of calling them victims, yet we must hold onto this language. It is a crime to hit, slap, rape, abandon, neglect, drug and steal from older adults. Even and especially when the perpetrator is a member of the family. We need adult protective services, law enforcement, prosecutors and judges to recognize these crimes. We need to stop dismissing these crises as family matters.

Reasons to Be Inspired

I am ready to call them survivors. The most hopeful part of the work to end elder abuse is starting to emerge. We need to understand resilience. What does it mean to survive abuse in old age? How does “trauma informed care” relate to these issues? How does a person who needs functional support continue to thrive? How do victims set their own course and live the rest of their lives as survivors?

World Elder Abuse Awareness Day is a day to reflect, focus and applaud. We need this day. We need to shout and talk and listen. We need to tell each of you in the community, “We have a serious problem.” Older people are not safe. For every year we recognize World Day, each of us has taken another lap toward our own old and older age. On this day, we join the world in the sobering acknowledgement of an international epidemic. I am inspired by this work. Inspired by older people. Inspired by survivors. Inspired by our determination to bring this epidemic out into the open and fight together for it to end.


Center for Practical Bioethics

National Latin@ Network

National Center on Elder Abuse

National Committee for the Prevention of Elder Abuse

National Adult Protective Services Association

Elder Justice Coalition

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Tuesday, June 6, 2017

Good Death, or Assisted Suicide?

The Case of Mr. Perry and his Pacemaker

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

NOTE: Dr. Rosell, a bioethics consultant and educator, will present the case of Mr. Perry for ethics discussion and likely debate on Thursday, June 22, 2017 at 7:00 PM in the artfully rebuilt Westport Presbyterian Church, 201 Westport Rd, Kansas City, MO. Bring your perspectives, arguments, and personal stories of moral medical dilemma. Admission is free. All are invited and welcome.

Mr. Perry (not his real name) was 83 years old and had several medical problems. He had spent the past several months in and out of hospitals and rehab. Prior to that, he lived independently in a small Midwestern town. Widowed many years ago, he subsequently enjoyed the company of a lovely lady friend who lived down the street from the Perry home. He had five adult children and numerous grandchildren.

Life should have been relatively good for this octogenarian. But life was not good. Not anymore. “My body is all worn out. I’m worn out. Don’t want to do this anymore, Doc. They say I can’t go home and be safe. And I’m NOT going to a nursing home. No way! Just stop that little gadget that shocks me and the part that keeps my heart going. I want them stopped. Yes, the pacemaker, too. A magnet will stop it, right? Just do it. Please.”

Tired of Fighting

Mr. Perry had a cardiac resynchronization therapy defibrillator (CRT-D) implanted a few years ago. It included an electrical pacing component for heart rhythms, on which the patient was 100% dependent. The defibrillator had shocked him, more than once, just before he came to the hospital E.R. with this request. That was the last straw for Mr. Perry. No more shocks for him. No nursing home or rehab or hospitalizations or medications. And no more mechanical pacing either. “I’m tired of fighting.”

Deactivating an internal defibrillator is one thing. The patient’s cardiologist didn’t need an ethics consultation for that decision. “If he doesn’t want to be shocked again, that’s his decision. And if it went off again after he’d requested it stopped, that could be a kind of torture,” she reasoned. Deactivation happened quickly after admission from the Emergency Department. A “Do Not Attempt Resuscitation” order was placed in the chart.

But the pacemaker, also? He wanted it stopped. Ought we do so? Would that be ethically respectful of this patient’s autonomy? Or would it be physician-technician assisted suicide?

“If we stop the pacemaker, Mr. Perry, you will die within a few minutes.”

“Yes, I know. I’m tired of fighting. Please.”

Ethics Take-Aways

There are at least three ethics “take-aways” from pondering this situation:

1) Although most clinical ethicists and cardiologists will argue that stopping Mr. Perry’s pacemaker is ethically and medically permissible, there is a significant minority opinion that it is not. Other thoughtful people will see this as troubling, too close to the gray line between suicidality and permissible refusal of life-sustaining treatment. One survey of cardiologists indicated that 77.6% (n=787) had been involved in pacemaker deactivation. Only 34.4% reported being comfortable doing so.  Anecdotally, a pacemaker manufacturer’s technician told me that neither he nor any of a dozen colleagues would agree to participate in turning off (or down to sub-therapeutic level) a pacemaker on which the patient was dependent. Two bioethicist-physicians debate the issue in a case review published as an article titled, “Is it permissible to shut off this pacemaker?”  The one dissenting from pacemaker deactivation in a case like that of Mr. Perry claims that doing so would be assisted suicide, which he claims is wrong. Would it? Is it? We do not all agree.

2) Informed consent process, both oral and written, for cardiovascular implantable electronic devices (CIEDs) ought to include discussion of deactivation and end-of-life decisions. Clinical colleagues and I published a review of consent forms and patient charts for 91 patients who had received an implantable cardioverter defibrillator (ICD). Only one of those records gave evidence of end-of-life discussion, which could involve device deactivation.  This paucity of information provided patients regarding deactivation ought to change.

3) One might reasonably ask whether Mr. Perry chose rightly. Even if we were to conclude that it was right of his cardiologist to respect her patient’s autonomous decision, is it possible that Mr. Perry himself acted wrongly? He had grandchildren, one of whom was in the room when Grandpa died. Ought he have been willing to accept lesser independence, to endure suffering awhile longer, to rethink what matters for an acceptable quality of life—if only to spend more time with his grandchildren? Were his values ordered rightly? One need not judge by simply raising the question. I am not yet a grandfather, nor do I physically or emotionally suffer very much right now, but I think that in Mr. Perry’s situation, I would hope to value and choose differently.

  1) Mueller PS, Jenkins SM, Bramstedt KA, Hayes DL. “Deactivating implanted cardiac devices in terminally ill patients: practices and attitudes,” Pacing Clin Electrophysiol 2008 May; 31(5):560-8. 
  2) Yates, FD and RD Orr, Ethics & Medicine 24, 1 (Spr 2008): .
  3) Niewald, Broxterman, Rosell and Rigler, “Documented consent process for implantable cardioverter-defibrillators and implications for end-of-life care in older adults,” Journal of Medical Ethics 2013; 39:94-97.

Letting Go

A hospital ethics consultation landed on the side of permissibility and respect for a capacitated patient’s autonomy. Subsequently, Mr. Perry had his wishes respected, and he died peacefully surrounded by family and a family friend, who read scripture and offered prayer. A priest chaplain had previously given last rites. His lady friend sat by his side, held his hand, stroked his arm and said, “We’ve had good years together, but you’ve suffered enough. I’ll let you go.” Mr. Perry’s last words were, “Thank you.”

Bioethics Case Studies

Case studies are an important tool in bioethics, especially in practical bioethics where the focus is on real issues in real life and real time. Case studies provide a roadmap for decision-making in future cases, help drive the development of new analysis and thought about complex medical and moral dilemmas, and are an effective way to bring bioethics alive for students, healthcare providers, administrators, attorneys and, even in some situations, patients and families. (Read More)


Monday, May 15, 2017

Improving End-of-Life Care for African-Americans through Advance Care Planning in Partnership with Faith Communities

Leslie McNolty
The Center for Practical Bioethics has worked on end-of-life issues and advance care planning for more than three decades. Over the years, we’ve been enlightened and encouraged by the six reports that the National Academy of Medicine has issued on palliative and end-of-life care in the USA. These reports clearly establish that palliative care and hospice are essential to address suffering and quality care for the seriously and terminally ill. Research also shows that improving shared decision-making processes, such as advance care planning, provide a path to greater satisfaction for families experiencing the death of a loved one. We know that individuals who complete advance directive documents are more likely to have their preferences for end-of-life care respected -- particularly the preference to die at home in hospice care. 

We also noticed with increasing alarm that African-Americans typically do not share in the benefits of advance care planning, palliative care and hospice care to the same extent that white Americans do. Statistics from the National Hospice and Palliative Care Organization consistently show severe underutilization of hospice by African-Americans – whites make up more than 80% of hospice utilization on a national level, with African-American utilization at about 8%. This disparity in hospice and palliative care utilization is particularly striking because African-Americans die at excessive levels from chronic diseases. 

Barriers and Opportunities

Unfortunately, there are significant barriers to implementing advance care planning tools in African-American communities. Many harbor a deep distrust of the traditional healthcare system stemming from egregious ethical violations in the past. Furthermore, African-Americans, who according to Pew Research Studies are know the most religious racial group in the USA, have significant religious concerns about advance care planning. For example, a survey of 205 African-American patients showed that “African-Americans were more likely to express discomfort discussing death, want aggressive care at the end of life, have spiritual beliefs that conflict with the goals of palliative care, and distrust the healthcare system.” 

Fortunately, despite all of this, a seminal report funded by the California Health Care Foundation in 2007 found that, although minority communities in California have done less advance care planning than whites, African-Americans had fewer negative attitudes about the general concept of advance care planning than do any other racial-ethnic group.5 

Nine Churches in Six Cities

In November 2015, the Center began a two-year project to work with religious communities to address advance care planning in African-American communities. With funding from the John and Wauna Harman Foundation, we partnered with VITAS Healthcare to recruit nine churches in six cities to work on advance care planning in their congregations. These churches designated advance care planning (ACP) ambassadors to teach about and advocate for advance care planning within their congregations.  

In Chicago, Dallas and Kansas City ACP Ambassadors focused first on reaching out to the clergy in their churches by making presentations at regularly scheduled work meetings. Teams in Atlanta, Philadelphia and West Palm Beach have worked through the different ministries in their churches to make presentations and organize events. At each event, Ambassadors asked the audience to commit to having a conversation about end-of-life care with their families. They also provided materials and additional information upon request following the presentation. In total, church teams organized 19 events that reached nearly 700 people. More than 200 attendees committed to having conversations with their family members about advance care planning and end-of-life care. Nearly 100 individuals approached the presenters for more information and discussion following the event. 

Crossing Over Jordan Conferences

ACP Ambassadors and VITAS Healthcare community liaisons in Atlanta, Chicago, Philadelphia and West Palm Beach each organized a half-day Crossing Over Jordan Conference to celebrate the conclusion of their six-month project and encourage other organizations in their communities to promote advance care planning. Nearly 500 community members attended these conferences, including representatives from local hospitals, assisted living centers, home health services, professional medical associations, community organizations and African-American churches.

The Crossing Over Jordan conferences were designed to exchange basic medical information about end-of-life care, as well as to celebrate the activities of the programs in traditional African-American church traditions that included music, singing, dancing and the spoken word performances.  There were also remarks from pastors and spiritual leaders connecting the idea of advance care planning with biblical scripture, and a contemporary theological exploration justifying the practice. Attendees of the Crossing Over Jordan conferences were encouraged to speak to their families and friends about advance care planning, and were told that they can rely on ongoing connection to the Center for Practical Bioethics and Vitas for resources on advance care planning in their communities.

The Center remains committed to improving end-of-life care for African-Americans by promoting advance care planning. We are planning the next stage of this project and look forward to meeting with our partners and other stakeholders in the next few months. 

i Able J, Pringe A, Rich A, Malik T, Verne J.  The impact of advance care planning of place of death, a hospice retrospective cohort study.  BMJ Supportive & Palliative Care 2013;3:168–173.
ii NHPCO’s Facts and Figures: Hospice Care in America, 2014 Edition, p. 5
 iii Rodriguez, J.M., Geronimus, A.T., Bound, J., Dorling, D. Black Lives Matter: Differential Mortality and the Racial Composition of the U.S. Electorate, 1970-2004.  Social Science and Medicine, 2015; 136-137 and 192-199
 iv Johnson K, Kuchibhatla M, Tulsky J., What Explains Racial Differences in the Use of Advance Directives and Attitudes Toward Hospice Care? Journal of the American Geriatrics Society 2008;56(10):1953-1958
 v Crawley L, and Kagawa-Singer M. Racial, Cultural, and Ethnic Factors Affecting the Quality of End-of-Life Care in California, California Healthcare Foundation Report, March 2007.   

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