ASBH Annual Meeting Presentations by the CEC

Members of the CEC will be presenting two panels at the upcoming ASBH Annual Meeting in Washington, DC and we are excited to share our work among the broader ethics community.

On Friday, October 7 from 8 AM to 9 AM we will be at Congressional Room C presenting our Report on Medical Decision-Making for Unrepresented and Unknown Patients.

On Saturday, October 8 from 3:15 PM to 4:15 PM we will be at Congressional Room A presenting our Report on Palliated and Assisted Voluntarily Stopping Eating and Drinking.

We look forward to seeing you there; to hearing your questions, comments, and insights; and to continuing the ethics dialogue!

Chaplains, Decisions & the Most 'Alone' of Patients

By Paul C. McLean, April 14, 2016

In making decisions about medical treatment for patients who are “incapacitated and alone,” as an influential American Bar Association study once described them, there is a tension among medical judgment, ethics and the law that may be necessary but can do harm to a patient’s best interests. 

A judge’s comment from a 2015 California Superior Court ruling captures this tension well: “The court acknowledges that this order will likely create problems in how many skilled nursing facilities currently operate. ...  The court has considered this burden and weighed it against the due process concerns, and finds that the due process rights of these patients is more compelling. The stakes are simply too high to hold otherwise.” 

In other words, however justifiable, consideration of best interests of these patients and the medical judgment of those directly caring for them carried less weight than due process rights. This is a set-up for medical indecision, poor care and moral distress among caregivers.

The patient and care team alike deserve better. And so the question becomes, is it possible that patient best interests, the ethical principle of respect for persons, and the legal guarantee of due process might each be honored? If so, how?

In an imperfect system, the best process increasingly is seen to be a multidisciplinary decision-making committee within the institution, working from clear policy guidelines and including members of the institutional ethics committee.

The Community Ethics Committee, of which I am a longtime member, has just completed its report on Medical Decision-Making for Unknown & Unrepresented Patients, submitting it to the ethics leadership of Harvard Medical School and posting it on this website (see PUBLICATIONS). 

For the first time, I’ve felt it necessary to take serious issue with a CEC report. CEC reports always reflect a group “voice,” and individual differences are not unusual. This time, I see too much difference between the group voice and my own.

The first difference is fairly trivial. Early in this study, I was in the minority in deciding what to call this class of patients. The CEC opted for Unknown & Unrepresented. I preferred, and still do, the designation Unbefriended, for a patient who not only lacks capacity and the voice of an informed, caring, unbiased surrogate, but has no constituency calling attention to the patient’s plight. 

This point is significant because this patient’s strongest advocates, often their sole advocates, are by default the medical team providing care. But in making medical decisions, something crucial is missing: the patient’s values. Without them, it is easy for bias to cloud medical judgement — sometimes concerning decisions about withholding or withdrawing life-sustaining treatments.

The patient is at the mercy of the care team, and the care team is compromised and in many cases experiencing moral distress, which affects more than one patient. The patient deserves better, as does the care team.

I commend the CEC, and in particular our chair and report author Carol Powers, for both recognizing and drawing attention to the invaluable contribution of hospital chaplains in the medical decision-making process for a patient whose wishes and values are a mystery, and who has no one to speak for them. 

This is especially true when treatment decisions must be made inside the institution —  in some cases, “off the radar.” 

A properly trained chaplain can perhaps uniquely advocate for the patient’s values and best interests as well as play a key role in building understanding and confidence in a process prone to public suspicion and distrust — especially in circumstances when limited availability of resources might influence, or be seen to influence, the treatment decision.

In nursing homes, critical care units and other institutions caring for the extremely vulnerable, such pressure on treatment decisions is increasing midway through a 30-year doubling of the nation’s elderly population; Unknown & Unrepresented (or Unbefriended) Patients have scared off or outlived loved ones, and ethical quandaries about their best interests are increasingly common, as are the stresses placed on care providers. Again, both deserve better.

As the CEC has discovered, chaplains play essential roles in medical decision-making processes in San Diego, Memphis and elsewhere. 

However, in elevating the chaplain’s role, the CEC seems to render existing, multidisciplinary institutional ethics committees — often consisting of physicians, nurses, ethicists, psychologists, social workers, lawyers, and community members — almost irrelevant to the process.

I believe this is a mistake, diminishes the recommendation, and potentially harms the CEC’s unique, important and well-earned voice.

The diverse perspectives of a multidisciplinary ethics committee, including chaplains, provide an effective, arguably unique counterbalance to physician bias in a way no single discipline can.

As discussed in this new report, the CEC learned a lesson from its earlier study of decision-making in cases of medical futility. At that time, the CEC recommended creation of an external, quasi-judicial decision-making panel. 

Impressed in particular with the work of the Consent & Capacity Board in Ontario, Canada, I advocated for that model. But as an idea that would require funding and training without much of a constituency to promote it, it was not a practical recommendation in times of austerity. 

Similarly, there is a history of state, local and national groups studying the plight of Unknown & Unrepresented Patients and recommending investment in public guardianship sufficient to meet the need. These recommendations rarely are adequately acted upon. 

Despite clear, expert guidance from multiple studies, too little has changed — except the patient population, which continues to increase. One troubling study showed that incapacitated patients without representatives remain in critical care up to 50 percent longer than similar patients who are represented, an indication of indecision that serves no one’s best interests.

And so the CEC is wise both to endorse the concept of an internal decision-making team, and to attend to the pressing need for public buy-in for such an idea. Elevating the role of chaplains can play an important part. 

An internal decision-making team can be responsive, efficient, accountable, and make decisions focused on the patient and grounded in moral/ethical principles. 

But the best of these internal decision-making teams are by design multidisciplinary, and the CEC seems to have overlooked this.
Two models worth further attention are found in New York (supported by statute, notably) and the Department of Veterans Affairs. Both set clear and accountable policy for medical decision-making within the institution and allow for judicial recourse as needed. 

Essentially, they establish and require a systemic form of due process within the institution, which is crucial for a vulnerable patient who can express neither agreement nor disagreement with care decisions, and whose perceived interests can become lost in a devotion to due process.

There is no perfect solution to this decision-making quandary, and with adequate funding, public guardianship as an extension of the judicial process might well be the ideal. But society’s track record of adequately supporting this with funding and training is not promising.

There also is a certain irony to something missing from the CEC’s report — any mention or recommendation of a role to be played by community members — patients and families included.

These morally and ethically complex decisions require public awareness, buy-in and participation if they are to respect both individual patients and the larger society at whose mercy the patients find themselves. 

As several CEC members know from personal experience, community members increasingly are valued participants on hospital ethics committees. So who better to advise on the community’s role in medical decision-making for an incapacitated, vulnerable community member than a group long dedicated to giving the community a voice in the bioethics dialogue? 

Perhaps this is for CEC consideration, and membership growth, in the future.

I again commend the CEC, and our chair, Carol Powers, for advocating for a vulnerable and marginalized patient, for seeing the wisdom of an empowered decision-making process within the institution, and for validating the role of chaplain.

The CEC is unique in its structure and purpose, its volunteer participants are admirably dedicated to challenging, consequential work, and the teaching hospitals and ethics leadership of Harvard Medical School have been visionary in seeing the value of such a group voice.

Amid the medical profession’s need for public buy-in, the CEC is a model that merits adoption elsewhere.

Love Wins

“Why?” is one of the first questions we humans ask.  Developing ethical justifications to support decisions is an essential part of my participation in the CEC: the details of “why” influences life-and-death decisions made by patients, caregivers, family, and health proxies. Facts are cold.  I believe that real life decisions ultimately depend on love.

The CEC (Community Ethics Committee) works hard to establish a rational basis for conclusions and positions.  But I’m realizing that our emotions usually decide.  I’d like to think that love wins, but lots of emotions have to be considered too.   

When our daughter was making college decisions, I was the rational engineer who got out the whiteboard and made lists of schools, reasons pro and con, and mapped strategy in a perfectly reasoned way.  But neither my daughter nor her mother looked at the reasoned charts, and I ultimately agreed that we would trust our daughter’s gut.  What she felt was the right destination for the next four years of her life was what mattered.  Rational decision making had almost no influence.

The idea that our positions and decisions are based on feelings more than reason was affirmed again when I read about religion’s place in secular medicine:  some basic moral philosophy and meta-justifications are all we have at the end of it.  In any case, authors quit before they get to the best part, the decision on life or death.  I’m convinced now that it is our emotion, “who and what we love” that counts.  

What are stock markets, after all? Numbers going up and down, they are the sum total of investors’ emotions: greed, anxiety and hope. There is not so much fact and reality in the investment world as an emotional index of how the investors feel at that moment.

On the hard ethical decisions that will have to be made by the computer and software programs that will govern self-driving cars, what will the program decide when the car is going at 70 miles per hour, and a child, mother, and baby carriage dash into the road?  It is traveling too fast for brakes to help.  Doing nothing: the child, baby, and mother will surely perish.  There is a choice:   steering to the right, the car runs into some elders at the bus stop who would be crushed. There’s a third option: the program could decide to steer left, off the cliff, and commit car-i-cide, killing both the passenger and destroying the car.  What will your so-smart autonomous self-driving car decide?

 

It is hard enough for a human to make such decisions, never mind an emotionless robot.   In that impossible scenario, the right decision for a person, will most likely be governed by who or what that person loves most.  A dearly loved family member will probably trump any stranger.  To love someone so much that you will do anything for them also means a choice to drive off the cliff and sacrifice your own life, is never entirely off the table.

After letting this stew for a while, and watching the current political spectacle, I also came to the conclusion that not only “Love Wins”, but “Hate Wins” as well.   Our basest animal bigoted racist xenophobic selves will use our love or our hate to drive our decisions. Sadly for some, some decisions will be forced on them by some people who think they know better how others ought to act.  Will our better selves come out and do the kind and compassionate thing?

Reason alone is far from sufficient. When my health care proxy decides whether I live or die, I hope it will be done with love and compassion.

Shukong Ou has been a member of CEC since 2011.

When Medical Ethics Enters the Campaign

Ethical questions in medical care and science will be prevalent throughout the presidential election season. How deeply they are considered will vary greatly. In the past week, two in particular have come to the fore, and how well they were engaged is worth considering.

Asked in Saturday’s Republican debate whether he would consider quarantining Americans returning this summer from the Olympics in Brazil, New Jersey Gov. Chris Christie said, “You bet I would.”

Christie, you will recall, was a vocal supporter of quarantine during the Ebola outbreak, memorably locking up Kaci Hickox in a tent for three days when the nurse returned from caring for Ebola patients in Sierra Leone (though she tested negative for Ebola). So perhaps the certainty of Christie’s reply, now that Zika is the new viral fear, is not surprising.

Rival candidate Ben Carson, a neurosurgeon, countered that “just willy-nilly going out and quarantining people because they’ve been to Brazil, I don’t think that’s going to work.”

In reporting this story, the news service STAT (www.statnews.com) noted that while the World Health Organization has declared a global public health emergency because of Zika, WHO “has not called for quarantining anyone who may have been exposed to the disease. In Zika-affected countries such as Colombia, pregnant women infected with the virus sometimes share rooms in the maternity wards with women who do not have Zika, with only a mosquito net to separate them. There is no evidence the virus can be transmitted through casual contact, or through sneezes or coughs.”

Mortality and care of the dying also became a campaign topic during a town hall sponsored by CNN, when Jim Kirhan, an 81-year-old, terminally ill man, asked Hillary Clinton how she would “advance the respectful conversation that is needed” about physician-assisted dying.

“It's very personal to me and resonates probably with many other people who are elderly dealing with health issues,” Kirhan said. “The question is coming to me as a person who is walking with colon cancer. And I'm walking with colon cancer with the word terminal very much in my vocabulary, comfortably and spiritually.”

The Washington Post said Clinton was “stumped” by the question. So it’s worth considering Clinton’s complete, seemingly impromptu reply.

“I really appreciate your asking the question,” Clinton said. “And I have to tell you, this is the first time I've been asked that question. And I thank you for it, because we need to have a conversation in our country. There are states, as you know, that are moving to open up the opportunity without criminal liability for people to make this decision, in consultation by their families, even, in some cases, with medical professionals. But the issue is whether the medical professionals want to be involved or just be counselors. So it is a crucial issue that people deserve to understand from their own ethical, religious, faith-based perspective. So here's how I think about it.

“I want, as president, to try to catalyze that debate because I believe you're right, this is going to become an issue more and more often. We are, on the good side, having many people live longer, but often, then, with very serious illnesses that they can be sustained on, but at some point, don't want to continue with the challenges that poses.

“So I don't have any easy or glib answer for you. I think I would want to really immerse myself in the ethical writings, the health writings, the scientific writings, the religious writings. I know some other countries, the Netherlands and others, have a quite open approach. I'd like to know what their experience has been

“Because we have to be sure that nobody is coerced, nobody is under duress. And that is a difficult line to draw. So I thank you so much for raising this really important, absolutely critical question that we're all going to have to do some thinking about.”