Reflections on Bioethics -- Where Next?

First, the bad news.

Bioethics consultation services like ours are an endangered enterprise.  For one thing, there is no apparent business case.  Physicians, nurses, social workers and others spend professional time at this work without an off-setting revenue stream.  Yes, it is true that at least some consultations result in "foregoing life-extending treatment." (This issue is so common in the field that it gets its own acronym - FLET).   And FLET, in turn, reduces cost, thereby improving margin.  On the other hand, nothing imperils the legitimacy of an ethics service more profoundly than equating its success with savings to the healthcare delivery system.  Additionally,  a contingent of respected physician leaders going back over the last 30 years have expressed suspicion of ethics services, opining privately - and sometimes publicly - that Bioethics isn't necessary, or shouldn't be, "if physicians would just act ethically."

This shouldn't come as a surprise.  Indeed, the whole field of Bioethics emerged as a backlash against technological Medicine and the prevailing mid-20th century view that doctors are the most qualified arbiters of what treatment is "right" for the patient - even for value-laden choices with profound consequences. What followed might have been an era of shared decision making that recognized the physician as the expert in what could be done, based on the best medical science, and the patient as the expert in what should be done, based on her personal values and preferences.  What followed instead, to some degree, has been a simmering antagonism between health professionals, patients and families over the authority to decide, and as a corollary, objection to "outsiders" (i.e. the Ethics consultants) insinuating themselves into the doctor-patient relationship.

And Now the Good News...

The December meeting of our Bioethics Committee was so well attended that we had to have more handouts made - twice.  The agenda was so full that we needed to prioritize.  And the conversation was so energetic (and diverse and thoughtful) that, as chair, I had two problems - how to keep the meeting from segueing from Robert's Rules to something more closely resembling conversation at a large Holiday dinner...and getting a motion to adjourn at the end of our scheduled hour with dialogue among physicians, administrators, a clergyman, a nurse and a social worker going full tilt.  There was something else special about the meeting - more members of our Board of Directors attended this meeting than ever before in its history. (There were four in all, including the Chairman of the Board.)


The question is why?  Why this interest, this engagement and the sense that this is vitally important work?  Notwithstanding the observation of one member, that Bioethics Committees should be in the business of working themselves out of a job" [by educating and inculcating ethical principles at the bedside],  moral distress among caregivers remains an urgent issue.  Failures of communication and trust between families and doctors still happen.  And deciding whether an intervention is extending life or prolonging death remains an everyday challenge.  As a trustee so aptly noted, "you should really call this the Snowflake committee, because every case is unique."

How We Got Here

On a personal note, my own discovery of Bioethics began as an undergraduate at Georgetown University in the 1970's and closely paralleled the development of the field as a whole.  At that time, this was a new term for a still-new field, and a course on the topic was offered in the Philosophy Department by a junior faculty member named Tom Beauchamp (pronounced in the Southern and decidedly un-French way: BEE - champ). 

Among the luminaries writing at the time was Dr. Edmund Pelligrino, an internist whose views on the matter proceeded from his Roman Catholicism and from a philosophy of Medicine grounded in the set of obligations that bind doctor and patient.  Warren Reich, over at the new Kennedy Institute, a GU affiliated program, was working on an Encyclopedia of Bioethics.  As it would happen, my own professor had recently written - together with James Childress - the authoritative textbook for the field highlighting their own intellectual infrastructure for a clinical Bioethics that we now rely on to such a degree that many of my colleagues likely believe it was handed down from the ancients.

Along the way, someone gave Beauchamp's approach a proper name: Principlism.

This is the idea, in brief.  Ethical conflicts in the hospital can best be understood in terms of four principles; hence the name.  One of these is respect for Autonomy, the patient's right to make decisions about his own body. A second principle - nonmaleficence - is to avoid harm.  'Primum non nocere' enjoins and prohibits the physician from doing anything that would cause injury to the patient, and requires him to direct his very best effort to comply with this moral precept.  A third principle is closely related; that is, that the physician shall act always in the patient's best interest.  Known as "beneficence," this mandate is shared in varying degrees with other learned professions where a fiduciary relationship exists between the professional and the one seeking professional service.  Finally, principlists refer to a notion of distributive justice to describe a moral responsibility to apply healthcare resources in a way that is essentially fair and equitable.

A purely principlist account of moral conflict would refract each clinical case through the lens of (often colliding) principles.  A physician receives an ambiguous result from a test for cancer, and asks the patient to repeat it.  Full disclosure would involve telling the patient that the news may be very bad (or maybe not).  Sharing this information would support the patient's right to information about his own health (Autonomy principle).  However, providing it would likely distress the patient, while doing nothing to advance his situation (raising considerations of Beneficence and Non-maleficence).  Therefore, telling the patient only that a repeat test is needed is an attractive option.  Whether this course of action is morally justified requires parsing the strength of arguments on behalf of these conflicting values.

Based on our experiences with the Ethics Consultation service, there are at least three other factors that come to bear in many, if not all cases.  One is medical information.  Good ethics starts with good Medicine.  (I have been reminded of this time and again by our committee's only card-carrying PhD Bioethicist, Dr. Robert Cassidy.)

The healthcare team and the family are at loggerheads over the question of PEG (feeding tube) insertion for a patient with advanced Alzheimer's dementia.  One side feels the procedure is necessary to "protect" the patient from aspiration pneumonia and malnutrition.  The other feels that this is an unnatural invasion at the end of life.  It should matter to us to know that studies have found no life extension benefit from this intervention for patients in this end-of-life circumstance. 

A second issue is communication.  So often, when family members are in conflict with the caregiving team, it is because messaging has been inconsistent or ineffective.

The fact is that our patients tell us about this every month, because we ask them.  One whole domain in the federal HCAHPS survey involves physician communication, and one question specifically asks how often doctors "explain things in a way you understand."  Month after month, more patients say that doctors treat them "with courtesy and respect" than answer positively to the question on clear communication.  We mean well.

Finally, there is a question of understanding.  When patients or families are in conflict with caregivers, there is, by and large, a reason.  It is our obligation to find out what it is.  But this takes time, something that is in chronically short supply in the modern hospital.  Nonetheless, getting the right medical facts, ensuring clear communication and being curious enough about the patient and family and their values and preferences and motivations - all of this is part of our job and necessary to obtaining the best outcomes for those who come to us for care.

I titled this blog entry with a question: "Where next" for Bioethics?  But I have taken up enough space for now.  Lets return to this in 2018.  Best wishes to all for a fulfilling, meaningful, ethical New Year!

Why Promoting Immunization is Frustrating, Time Consuming and Financially Counterproductive...But Crucial

"In 2015 pneumococcal conjugate vaccine, as the children’s formulation is called, reached the Bangladeshis, and Saha’s research team is intently tracking its progress. If PCVs prove as effective around the world as vaccine experts hope, they promise both a greatly lowered mortality rate—that’s many thousands of small children staying alive instead of dying before they’re old enough to start school—and much less nonmortal sickness. Less of the rapid pneumonia breathing; less of the fever, the sucking chest, the rattling cough, the blue lips, the bedside watch by parents pulled away from the paid work that supports their other children. Less … suffering, I kept hearing Saha and his Bangladeshi colleagues say, as though sensing that an outsider might need help appreciating the stakes.

"Because from the vantage of a country like the United States, it can be easy to imagine that the most pressing vaccine challenge of 2017 lies in convincing certain communities of skeptical parents that they really ought to inoculate their kids. Those efforts are important, to be sure. But even more urgent—more ambitious, more complex, involving many governments and billions of philanthropic dollars—is the international collaboration to get new vaccines to children in the developing world, where to this day the suffering caused by vaccine-preventable disease is as vivid and nontheoretical as the frantic families Saha sees every day in the halls of Dhaka Shishu."

Source: Here's Why Vaccine are so Crucial, by Cynthia Gorney; National Geographic Magazine, November 2017.  

(See: https://www.nationalgeographic.com/magazine/2017/11/vaccine-health-infection-global-children/)

WITH THE SUPPORT OF THE AMERICAN CANCER SOCIETY and Northwell's Oncology service line, a group of Huntington Hospital pediatricians and other child health professionals are collaborating to increase the rate of adolescents immunized with the human papilloma virus (HPV) vaccine known as Gardasil.  This is one of two vaccines (the other being hepatitis B vaccine) that were specifically developed to prevent potentially fatal cancers.

As noted in this month's National Geographic, the US is among a relatively small number of countries where the problem of under-immunization is decidedly NOT about access.  In fact, the CDC maps that depict immunization rates by state and locale tell a strange and interesting story: financially challenged places like Mississippi significantly outperform downstate New York, Colorado and the San Francisco Bay Area when it comes to immunizing children.  For that matter, the vaccination rate in poverty-stricken Belize is far higher than in the US overall.  

The reasons are not mysterious.  The phenomenon of "vaccine reluctance" has been so well studied that national meetings of our professional societies routinely include symposia on the topic, and research studies on how to combat it increase in number every year.  

At its core, vaccine reluctance represents a movement - a backlash - that calls into question both the science of vaccinology and the motives of the many organizations, from the WHO to the CDC, IDSA, AAP, AAPF and many others that seek to educate the general public about the following facts:

1.  Vaccine-preventable diseases continue to pose a threat to children and adults.

2.  Vaccines are among the safest pharmaceuticals on the market.

3.  The list of known, severe vaccine side effects has almost nothing in common with the list of fearsome (but mythical) side effects that are highlighted on dozens of "anti-vax" websites, and instill in thousands of parents...not certainty about the issue, but just enough doubt to cause serious damage to our national program of immunization.

What are the main drivers of this retreat from a preventive strategy that has been called the most important contribution of the 20th century?  One is certainly the very success of immunization in making previously dreaded diseases less visible, among them: diphtheria, with its throat pain, fever and suffocating airway obstruction; measles - highly contagious, red eyes, cough, fever and rash, resulting now and again in pneumonia or brain infection; and pneumococcus - agent of plain vanilla middle ear infection, but also of death-dealing sepsis, and bacterial meningitis.

Additionally, human nature is such that giving a health infant something that could make them even a little sick, or that carries even a very, very small risk of more serious harm, seems like a bad idea, even if those harms or risk are outweighed by the risks of NOT immunizing, by a large margin.

Perhaps the most potent influence on our nation's vaccine program is the social/cultural/political trend toward a kind of libertarianism that is distrustful of government, authority figures and mandates.  As Senator Rand Paul (a physician) has stated, "I think this is a question of freedom...the government doesn't own your children...parents own their children."   To the extent that science itself is seen as just one voice in the marketplace of ideas, it is no more surprising that the guidance of infectious disease experts would be dismissed as would the conclusions of climate scientists.  We are, after all, living in an era of "alternative facts."

The Huntington team convened for the first time earlier this month, to define our goals and the way forward.  Several studies have tried to determine what interventions lead to higher immunization rates and which do not.  It seems that more information doesn't necessarily improve this outcome; at least one published study found the opposite effect, when an informational strategy was applied to a previously vaccine-reluctant group of parents.  Neither does a shared decision-making model.

In fact, the most interesting study of the last few years found that the patients of clinicians who took a "presumptive" approach were more likely to be immunized that those who took a more tentative, "collaborative" stance.  (The latter group would generally open the conversation with some version of 'how do you feel about immunizing Alice with the HPV vaccine today?'  The 'presumptive' clinician, on the other hand, is likely to conclude the visit with 'I'm going to order a lipid panel for Alice, and she's due for her first dose of HPV vaccine today.  The nurse will be in with that in a few minutes.  What questions do you have?')

I'll keep you posted on our progress.  

WHO poster depicts disease burden of HPV and the vaccine program that prevents it

  

Can you hear me now?

This past week I had the opportunity to orient a large group of incoming residents to our hospital, providing some background on our institution but also giving them "the benefit of my opinion" on many matters relating to healthcare and the profession of Medicine.

I asked for a show of hands.  How many of you treat every patient with courtesy and respect?  Listen carefully to your patients? Explain things in a way they can understand?  The good news is that all the hands went up.  I haven't conducted this survey with our attending staff, but I believe that except for some (understandable) eye-rolling, the honest answers would be the same.

The bad news is that our patients don't agree.  Or, at least one time out of five they don't.  What does this tell us?

Hospitals and health systems like ours are devoting more attention than ever to physician communication skills.  In fact, it was to audit a day-long medical communication program, soon to be rolled out to our doctors, that I spent a day recently in Northwell's own university, known as CLI, the Center for Learning and Innovation.   I was already convinced that this is something we need, and that the investment of time in an effective training program could be worthwhile.  What I came away with was a sense of how much there is to learn and practice, a reminder that we can all improve (no matter how good we think we are), and that this matters in a host of ways to the patients and families who seek our care.

If you ask most physicians of my generation what they were taught about communicating with patients - at least during formal training - they will tell you how they learned to "take a history."   This is a process that begins with a "chief complaint" (it would seem that patients are, by definition, "complainers") and includes a "history of the present illness" followed by the "past medical history" and so forth.  A moment's reflection reveals, however, that understanding the data set necessary to work toward a diagnosis - important as this may be - is not the same as knowing how to communicate effectively.

(When pressed, most of us can recite at least one pearl - that we ought to sit down when we speak with the patient "because this makes it seem like we're there twice as long." It seems to be true, by the way. But mastering a single knot does not an expert sailor make.)

How do we know we need to improve?  Simply put, because we ask our patients how we're doing every day.  The questions I asked our new residents are the same questions that patients receive as part of the federal survey known as HCAHPS.

For several reasons, communicating effectively with patients and families is harder now than it ever was before.  Consider that in the past, when patients experienced durable relationships with their primary physician, who then became the physician-of-record during times of hospital care, the dynamics were quite different.  The patient chose the physician, and if the relationship didn't work, the patient chose another physician.  A long-term relationship meant that the parties really knew one another.  There was a bond, and there was confidence both in the physician's skill and in his commitment to the patient's best interest.  Care was also less complex, with fewer interventions and fewer consultations.

The contemporary hospital-based physician faces a very different scene.  Emergency physicians, hospitalists and intensivists practice in teams.  There is no pre-existing relationship with the patient, and patients are passed from one provider to another. (I am reminded of the traumatized foster child, passed from one home to another, reluctant to trust or form relationships at all...).  Consistent messaging becomes increasingly difficult, as differing communication styles intersect with bona fide differences of opinion superimposed on the dynamics of acute illness where priorities change from day to day.

In this setting, its not that effective, empathic communication isn't possible.  To the contrary, it is more important than ever, exactly because it isn't easy.  In the framework of education, we could say that the requirements are threefold - knowledge, of what comprises effective communication; skills, which means practice; and attitudes, referring to the extent to which we recognize and value relationship-based care as a foundation to creating the outcomes we want for our patients.  For many of us, exceptional skill in this domain is also foundational to our sense of professional pride and accomplishment, to what we mean when we call ourselves "physicians."

  

Empathy in Healthcare

One of my favorite experiences is running a didactic session for our Family Medicine residents  once (and often twice) each month.  Last week, however, I was a little nervous.  Having covered a lot of the core child health topics since the beginning of the academic year, I thought it time to tackle something "different" - the nascent field known as Narrative Medicine.

If Narrative Medicine (NM) has a founder, it would be Columbia internist Dr. Rita Charon. NM burst into our collective consciousness in 2004 with the publication of her seminal Perspectives essay in the New England Journal entitled "Narrative and Medicine."  Her thesis was that the telling and hearing of the patient's story - not his medical history, but his personal, self-defining narrative - constitutes a creative act, essential to the relationship between physicians and patients, and necessary to our understanding of the patient and his "dis-ease."

If Narrative Medicine is the answer, I asked our group, what is the question?  That is to say, what ailments (ours and our patients') does this new (or not-so-new) philosophy address?  One answer comes from a body of research that seeks to understand what happens to trainees between their entry to medical school and the completion of graduate training.  More exactly, what happens to their ability to recognize and connect with personal suffering, to their capacity for empathy?  

I was quite surprised to learn several years ago that empathy can be measured.  At least that is the view of the researchers who created the Jefferson Scale of Physician Empathy (JSPE).  What is even more interesting is that this validated tool has been applied in a number of research studies to the trajectory of empathy in physicians and other health professionals over time.  It turns out that those who choose Medicine enter training with a full measure of this desirable trait - more than the average person, in fact.  According to a meta-analysis of 18 studies published in 2011, the sad fact is in what happens next - empathic capacity declines.  Substantially.  For some, things get better later on, after residency and fellowship, but not for all.  

What causes this erosion of empathy?  Several factors have been proposed.  Most often discussed in teaching circles is a process of acculturation wherein a set of beliefs, attitudes and behaviors are role-modeled by more senior trainees to their younger reports.  Not only are these behaviors not sanctioned by leadership, they generally conflict dramatically with the stated mission and vision of our institutions of medical education - hence the term "hidden curriculum."  Another factor is the very frequency with which trainees encounter human suffering.  Because this suffering is a "normal" feature of the healthcare environment, the sensibilities necessary to feel for another are challenged and blunted.   As George Eliot noted in her novel Middlemarch,

"We do not expect people to be deeply moved by what is not unusual. That element of tragedy which lies in the very fact of frequency has not yet wrought itself into the coarse emotion of mankind and perhaps our frames could hardly bear much of it..." 

Narrative practice, whatever its other merits, seeks to serve as a corrective and an antidote to the hidden curriculum.  In an essay of the same name, NYU physician Jerome Lowenstein once asked "can empathy be taught"?  Since is it evident that empathy can be un-learned on the wards, perhaps, the argument goes, this novel approach to focusing attention on the humanity, the subjective and deeply personal experiences of those who seek our care, and those who provide it,  may mitigate this threat to our ability to be the physicians we intended to be. 

We should hope so.  It has been established that patient outcomes (including Hgb A1C levels in diabetic patients) are impacted by physician empathy.  There is a measure of this quality to be found in nationally-collected and publicly-reported patient experience data. ("During this hospital stay...how often did doctors listen carefully to you?").  Finally, we ourselves are impacted.  It has been observed that one feature of physician burn-out, an increasingly prevalent problem, is a sense of disconnection from our patients and of ineffectiveness in our work.  Empathic connection is exactly the inverse of burn out.  Dr. Lawrence Smith, founding dean of our heath system's School of Medicine, has stated as much by asserting that finding the stories of our patients is the best prevention for burn out.  It is curiosity about our patients and their lives, and indeed our privileged access to their most personal aspirations and fears, that creates a foundation for trust, and both defines us and sustains us as physicians. 

How Better Diagnostic Tests Can Fail to Make Us Smarter

I was rounding on our Pediatric Unit recently, and asked about a patient admitted to our service.  I was told that the patient was "admitted with a human metapneumovirus infection."  

That we happened to have this datum in hand is, of course, a side effect of rapid, broad-spectrum viral antigen testing, a fairly recent development.  Actually, these panels also detect certain bacterial pathogens, such as B. pertussis and C. pneumoniae.  This information would have been very challenging to obtain only a few years ago.

When the patient - who was eighteen months old - was described as having hMPV, I offered an opinion about why that could not possibly be the reason for admission, though I don't doubt for a moment that the toddler tested positive for this pathogen.  The problem is that the statement isn't counter-factual.  Rather, it is operating from the wrong frame of reference.  This makes it deeply and complexly wrong, and it illustrates a fairly pervasive misunderstanding about how infectious diseases operate, how clinical diagnoses are made, what such entities mean and how an appropriate plan of care comes about.

There are a few organisms that are so reliably linked to a single clinical entity that the disease state and the pathogen that cause it are one and the same thing.  I suppose I would put primary varicella or measles in this category, or maybe Shigella or pertussis.  Even with these examples, caution is in order.   For a much larger group of agents, however, infection is not "destiny."  With adenoviruses, coronavirus, rhinovirus, respiratory syncytial virus (RSV), hMPV and others the clinical presentation is incredibly variable.  Many patients experience only the common cold.  Others develop pharyngitis, largyngotracheitis, acute otitis media, bronchopneumonia or wheezing.

Quick - what's the most appropriate disposition for a patient coming to the ED with Streptococcus pyogenes infection? S. pyogenes (or Group A B-hemolytic streptococci) in children can cause pharyngitis, acute otitis media (rarely), cellulitis, erysipelas, necrotizing fasciitis, pneumonia, sepsis and more.  It is also an asymptomatic colonizer of the upper respiratory tract.  So the right answers could include home with no treatment, admit to ICU, and anything in between.  It depends on the diagnosis much more than the bug.

This obsession with getting the name, rank and serial number of each respiratory tract pathogen has engulfed adult medicine as well.  It's not that these viruses are necessarily more virulent than "plain vanilla" cold viruses.  In fact, rhinoviruses - which are of the vanilla variety - show up a fair amount, including cases of COPD exacerbation in the elderly.  No, these ARE the names of the vanilla viruses that cause sniffles every winter.  It's just that they're capable of more.  We've known this for a number of years.  But now we're putting a name to the face.

However, these pathogens are related only tangentially to the real problem before us - what clinical diagnosis and what disease state are we dealing with?  How is it managed?  When is in-patient care necessary?

What are these respiratory panels good for?  Isolation, probably.  Research and epidemiology.  Influenza detection, because there are antiviral medications.  That's probably about it.  Identifying the cause of a fever?  Be careful here.  In the winter, a large number of people will be positive, and co-infection with another pathogen is not rare.  Making a better diagnosis?  Not so fast.  Virological identification does not a diagnosis, nor a diagnostician make.

That 18 month old patient with hMPV - what would the right care be?  Home with reassurance? The floor with bronchodilators?  The PICU?  Since her active problem was gastroenteritis, fluid replacement was the ticket.  The same fluids we would have administered before the viral panel came to town.    

Doc, What Would You Do If This Were YOUR Father?

When families are faced with decision making at the end of life, the physician is there to provide accurate medical information, to serve as a resource, and just possibly to be a shoulder to lean on.  Is it "best care" for the physician to also share his personal opinion about what he would do...about the dialysis, the ventilator, or the vasopressors?  Or is this too intrusive or otherwise "out of bounds"?  In the December issue of the journal Pediatrics, several bioethicists opine on whether a neonatologist is acting in the best tradition of the profession...or not...when he makes a specific recommendation - against tracheostomy - in the case of a three month old neurologically devastated, former 23 week premie, emphasizing to the family that this child will never communicate meaningfully, enjoy most of what children typically experience, become independent, or live other than on life support in a perpetual state of chronic illness (1).

By and large, ethicists oppose a "directive" approach that effectively substitutes the values and preferences of the physician for those of the patient or his decision-making Agent.  The argument is that such a paternalistic approach is objectionable exactly to the degree that it infringes on the autonomy rights of the patient. In the same paper, a commentator suggests that a directive approach can be ethical if, and only if, four criteria are met.  As they apply specifically to the care of the infant in the above case, I will generalize them for our purposes: (1) how certain is the prognosis?...(2) how certain is the negative effect on the patient's and family's life if the life extending intervention is pursued?...(3) is the family adequately informed about the options?...and (4) will the physician's directive approach damage the physician-patient relationship? By this view, a directive approach will not pass muster if it fails any of the above tests.

On the other hand, there is a principle known as the "best interest standard" (BIS) that has been endorsed internationally as foundational to the ethical care of children.   The treating physician needs the permission of the child's parent to render major medical care, but he is ethically bound to refrain from seeking permission to carry out interventions that fail the BIS.  To some degree, this concept stands in opposition to unrestrained parental Autonomy and offers acknowledgement of the physician's own ethical values and responsibility.  

The pediatric case study cited above is both different from and similar to the situation in the adult ICU, where the intensivist is treating, for example, an 80 year old retired attorney with CML and multi-organ system failure.  The medical facts are different, of course.  The infant may (or may not) live for years on end after the contemplated tracheostomy, while the elder patient's lifespan is sharply demarcated.  One patient faces a potentially long but severely limited life, while for the other, the question is not whether the patient will die, but how.  In both cases, however, a "best interest" consideration arises.  Ethical distress, occurring when health professionals feel powerless to avoid inflicting unhelpful, injurious interventions on their patients, affects many nurses and physicians working in Critical Care settings and elsewhere.  Does the best interest standard, as it exists in the field of Pediatrics, have a parallel in adult Medicine?  Should it?

Arguably, this issue can be understood as a restatement of the "futility" problem. The narrowest definition of futility is applicable to interventions that will not achieve the desired biomedical goal (such as defibrillation restoring an effective cardiac rhythm).  There is strong consensus that the physician is not only entitled, but also duty bound to refrain from administering treatments that are known to be ineffective.  A "best interest" standard correlates better with a broad definition of futility that categorizes as inappropriate interventions that achieve physiological goals but fail to restore the patient to a state of health that is consistent with a "reasonable" quality of life, physical independence or, in some cases, personhood per se. On the other hand, broad definitions of futility face criticism from those who would argue that patient's values and preferences (and not the physician's) should guide decision-making when the issue is "quantity vs quality" of life.

There is also the issue of "quality of death."  When the condition is clearly terminal, and ongoing treatment is clearly burdensome to the patient, to what degree should Autonomy considerations (expressed through third parties who may or may not be capable of representing the patient) outweigh and over-rule the judgment of the healthcare team?  Shouldn't incapacitated adult patients also have the benefit of care from physicians who comply with a "best interest" standard? And if this is so, should the family not, at the very least, have the benefit of the physician's opinion?

What do YOU think?  Write to this blog.  Let's start a debate for 2017.

Ref: (1) Blumenthal-Barby J, Loftis L, Cummings CL, et al. Should Neonatologists Give Opinions Withdrawing Life-sustaining Treatment?. Pediatrics. 2016;138(6):e20162585