Topic: Decision Making
February 12, 2016 | Posted By Claire Horner, JD, MA

When patients lack capacity, physicians look to family and friends to step in and provide consent for treatment on behalf of the patient. These surrogates, whether they were appointed by the patient as their health care agent or become health care surrogates by default under state law based on their relationship to the patient, have the right to receive information related to the care and treatment of the patient and have the corresponding responsibility to make health care decisions for the patient based on either the patient’s previously expressed wishes or her best interests.  What they don’t have, however, is the right to control and direct every minute aspect of the patient’s care in the hospital.  It would take several blog posts to discuss the conflicts that occur between surrogates and health care providers because of this (such as DNR orders, barriers to discharge, and demands for certain medications, to name a few), but perhaps the most concerning example of surrogate over-reach is the issue of inadequate pain management.

The use of pain medication can be difficult for both patients and providers, especially with the rate of opioid abuse in this country. Patients and their families are often afraid of the possibility of addiction, while physicians are reticent to prescribe narcotics for fear of misuse.  Whether or not a patient is a “drug-seeker” is a common question that arises when physicians are deciding what to prescribe. However, in the context of terminal illnesses – particularly at the very end of the illness – the shift in focus from curative to palliative care highlights the need for sufficient pain control in the face of nearly intractable pain.  It is in this context that denial of pain medication, or poor pain management, is most clearly an ethical issue.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

January 7, 2016 | Posted By Wayne Shelton, PhD

Alzheimer’s is a progressive disease that over time robs the person of their selfhood. Eventually the advanced Alzheimer’s patient lives in a world of discrete, fleeting moments. The former self is obliterated and all of the personal connections to former loved ones are forever lost. The current self or the “now-self” is self-contained in each passing moment so there are as many selves as there are moments. From the onset of diagnosis a patient may live for as few as 3 years to as many as 10 or more. Much depends on the age of the patient and the comorbid conditions. But it is important to make clear: Alzheimer’s is a terminal disease for which there is no effective treatment to abate the progressive symptoms or to prevent or slow the mental and physical dying process. Though death does not occur until the whole human organism ceases to function, death must also, at least partly, be understood as the gradual dying of that unique personal self. This includes the higher brain functions that allow humans to be their uniquely personal selves, with personalities, habits, loves, careers, causes, values, characters, and so on. When these aspects of the patient begin to wane, there begins the gradual loss of “critical interests”—those personal aspects of one’s life one controls as an autonomous, social human being and moral agent.

Yet, the loss of critical interests or what we might call rational selfhood, do not necessarily entail the simultaneous loss of “experiential interests” that are connected to purely biological functions.  The Alzheimer’s patient may continue to have a robust interest in food, drink, music, social interaction (even without recognizing the person with whom she is interacting), sex, and so on. Patients with robust experiential interests but no critical interests may eat hearty meals and be social in very new ways, sometimes with intimacy, with people they never knew before. But at some point in the course of the disease, even those experiential interests begin to wane and eventually disappear. At that point, patients with Alzheimer’s no longer are able to feed themselves or care for themselves in any way. In fact they may be totally puzzled having food in their mouths, not knowing how to chew and swallow, or having to go the bathroom. They live in a world where they cannot comprehend what is happening to bodies. For many, the possibility of losing all of one’s critical interests as a human being and being left with only experiential interests is terrifying. So how does one plan one’s own medical care during this time?

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

December 24, 2015 | Posted By Paul Burcher, MD, PhD

I was surprised to read recently in the New York Times that a woman has undergone a cesarean section despite her refusal to consent to the procedure.  While the details of the case are not entirely clear in the article, so I do not want what follows to be understood as a specific comment on this case, my surprise arises because I thought the ethics of refusal of consent were not in dispute.  The American College of Obstetrics and Gynecology has taken a clear position of this: it is not justifiable to perform surgery on a patient with decisional capacity without her consent. ACOG’s committee opinion, “Maternal Decision Making, Ethics, and the Law,” strongly discourages even attempting to seek a court order for treatment when a pregnant woman refuses cesarean section, and concludes with a statement that:

Pregnant women's autonomous decisions should be respected. Concerns about the impact of maternal decisions on fetal well-being should be discussed in the context of medical evidence and   understood within the context of each woman's broad social network, cultural beliefs, and values. In the absence of extraordinary circumstances, circumstances that, in fact, the Committee on Ethicscannot currently imagine, judicial authority should not   be used to implement treatment regimens aimed at protecting the fetus, for such actions violate the pregnant woman's autonomy. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

June 9, 2015 | Posted By Jane Jankowski, DPS, LMSW

Clinicians striving to help patients achieve healthcare goals often encounter the perplexing dichotomy of the patient’s stated goals and preferences and actions to the contrary. Some of these challenges can be overcome with education and close follow up to help reinforce adherence to medical recommendations, but other times, these barriers are more enigmatic.

Take for example, a patient who requires hemodialysis to sustain life. She sometimes shows up for her outpatient dialysis, but more often does not show up and is admitted to the hospital for emergent dialysis several months in a row. In consultation with her providers she is adamant that she does not want to die, and knows that she needs the dialysis to remain alive. She is discharged, and the pattern continues. Liberal scheduling with the outpatient service, transportation, reminders are all offered. Psychological tests and support are provided, and yet, her action pattern of not adhering to the treatment plan continues. Again, she is advised it is acceptable to halt and she will be offered palliative care. She refuses, and says she wants to live and will sit for dialysis. What is her genuine preference? Should we honor these statements, or accept her actions as the more authentic expression of her wishes? Though this hypothetical example is quite familiar to renal care providers, the dynamic spans many scenarios leaving many practitioners with a dilemma about the practical limits of honoring verbalized wishes that are not supported by congruent actions.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

March 10, 2015 | Posted By Jane Jankowski, DPS, LMSW

One of the challenges clinicians must learn to manage is the patient who does not adhere to medical recommendations while expressing the desire to be well. It is widely accepted that patients with the capacity to make informed decisions retain the right to make choices that are good for them and choices that are not, there are instances where capacity to make a choice becomes less relevant than the practical considerations related to achieving the patient’s goals. When patients state they wish to recover from illness but refused to comply with the necessary treatments this disconnect poses a different kind of dilemma. Morally, it is simpler to digest that that some patients will refuse treatment, and there is robust support for respecting refusals. But what do we do when a patient asks for one thing but does another? Such cases pose intractable impasses for providers who arrange care plans based on the patient’s stated goals of recovery, yet encounter what seem to be enigmatic refusals to adhere to recommendations and interventions. There is a clear obligation to attempt to understand the patient’s perspective and thoroughly as possible. What may appear to be inconsistencies in preference may very well have a logical explanation. Once efforts to unpack dissonant expressions have been exhausted, a different approach may be needed to figure out what may be possible for such a patient. The first question is often about capacity – does a patient who asks for one thing but does another possess the ability to make an informed decision? In some cases, the resolution ends here if the patient is found to be unable to make an informed decision – or does it? If the objection is strong, and the intervention requires a high degree of cooperation from the patient, capacity may be moot because there is no practical way to proceed without cooperation. For example, a patient who insists she does not want to die, but simultaneously resists life sustaining dialysis leaves providers with very few options. A patient receiving a temporary intervention to buy time for recovery may in fact, not achieve the desired healing – how long must a bridge therapy continue? In such cases, capacity may be part of the picture, but I would argue it sometimes becomes a red herring we chase instead of taking a hard look at the medical facts and practical considerations in such cases. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website. 
October 30, 2014 | Posted By Thomas Andersen, PhD

Implementation of medical quarantines in America brings into conflict various legitimate arguments regarding who, if anyone, should have the authority to restrict movements of citizens.  Quarantines are not new, but they exist now in a world with new dangers and new opportunities for abuse.

In teaching medical students in recent years, it became apparent that many students found the concept of a home quarantine to be abhorrent.  Many were aghast at the concept that a patient could be restricted from daily activities, and found it an egregious violation of civil liberties and ethical conduct.  Interestingly, these views were often not mitigated substantially when students were informed that, in former days, quarantines were fairly common in this country and elsewhere.  In a world before the Internet in which home confinement was really quite restrictive, medical quarantines for diseases such as small pox, tuberculosis, or even measles were not uncommon. Such quarantines were usually imposed by a local health official.  In addition, many families self-quarantined, or at least avoided exposure to potential sources of disease. For example, some people used to avoid many summer activities for fear of contracting polio.  Due largely to the development of vaccination, many of the diseases that would have invoked a quarantine in earlier years are no longer of concern, and the concept of quarantine has become a bit anachronistic, even in a world that offers many portals that would seemingly make confinement less onerous.  But the topic of quarantine requires renewed consideration in the world of today.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

September 9, 2013 | Posted By Marleen Eijkholt, PhD

Sarah is 10 years old and has cancer. She has lymphoblastic lymphoma, an aggressive form of non-Hodgkin lymphoma. News reports suggest that her parents and Sarah herself, decided to stop chemo treatment. “Sarah’s father said she begged her parents to stop the chemotherapy and they agreed after a great deal of prayer”. Sarah and her family are Amish. Reports note that they refused chemobecause the side effects made Sarah horribly sick, and that she was worried about losing her fertility. They decided to use a doctor who would attempt to treat the cancer with natural medicines, like herbs and vitamins. 

Over the last couple of days, their court battle has been outlined in the media. The hospital, where Sarah had been treated with chemotherapy, had applied for limited guardianship.  Guardianship would allow them to ‘force’ chemo therapy on her, particularly as they estimated her chance of long-term survival around 85% after treatment. Initially, this guardianship request was refused on grounds that it was the parents’ right to end treatment, while on appeal the judge ruled her best-interest had to be reconsidered. However, the most recent judgment reasoned that the parents were concerned and informed, that they have a right to decide about treatment for their child, that there was no guarantee for success of the chemo, and that guardianship & treatment would go against the girl’s wishes as it could cause her infertility. Guardianship was refused; Sarah’s health is governed by her parents.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

May 1, 2013 | Posted By Paul Burcher, MD, PhD

When Beauchamp and Childress wrote their first edition of Principles of Biomedical Ethics, Immanuel Kant figured prominently in their discussion of the principle of autonomy.  Now he warrants barely a mention in the same, much revised chapter of the sixth edition.  Why the substantial de-emphasizing of Kant’s philosophy, when he wrote such important ethical treatises in which the human ability to make free and autonomous choice is so central?  Isn’t his philosophy the basis for our biomedical principle of autonomy?  The surprising answer is no, it cannot be. One reason is that Kant’s philosophical use of the principle of autonomy is actually quite different than the biomedical principle.  The other answer is that Kant’s principle does not provide a philosophical justification for the protection of patient’s rights.  I will explain both of these perhaps surprising claims.  But I do believe there is still a role for Kantian autonomy in the discipline of bioethics:  it remains a valid criterion (or yardstick) for when physicians should accede to patient requests for treatment.

Autonomous choice for Kant is ethical choice.  When we choose a course of action because it is consistent with the Categorical Imperative, we are choosing autonomously because we are freely choosing to obey an ethical law rather than being a slave to our passions and desires—we are not being pushed along by the world, we are initiating a new action for reasons that are somewhat “otherworldly” because they are neither empirical nor material, the ethical law is a priori and therefore “above the fray”.  But patients choose a course of action in healthcare for many reasons, and most of these reasons are amoral, and some may even violate Kant’s Categorical Imperative, such as refusing treatment for a non-terminal condition.  Kant saw any “suicide” as a violation of the second statement of the Categorical Imperative because human life must never be treated as a means to an end, and suicide abandons life for some reason (intractable pain, depression, despair), thereby treating it as a means, not an end in itself.  The point of this is that most decisions in a healthcare setting do not qualify as autonomous under Kant’s framework, because they are not ethical decisions in a strict sense.  They are done for personal reasons, which need not conform to moral law.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

April 18, 2013 | Posted By Ricki Lewis, PhD

You have your genome or exome (the protein-encoding part) sequenced to help diagnose a puzzling set of symptoms, and something totally unrelated, and unexpected, turns up – a so-called “incidental finding.”

Surprises, of course, aren’t new in medicine. The term “incidental finding” comes from “incidentaloma,” coined in 1995 to describe an adrenal tumor found on a scan looking for something else. I had one — a CT scan of my appendix revealed a polycystic liver. A friend had it much worse. She volunteered to be a control in an Alzheimer’s imaging trial, and her scan revealed two brain aneurysms!

Geneticists have long expected an avalanche of incidental findings from clinical (exome or genome) sequencing. Researchers from Baylor College of Medicine and NHGRI and elsewhere described several cases at the American Society of Human Genetics annual meeting last fall. My favorites:

- A boy had his genome sequenced as part of a project to better diagnose syndromes of developmental delay, intellectual disability, and seizures. Researchers found the aorta weakening of Marfan syndrome, gave the boy a repurposed drug in clinical trials, and he’s ok.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

March 25, 2013 | Posted By Marleen Eijkhjolt, PhD

This blog post solicits for your opinion, so please stick with me. 

There are two prominent sad realities in my clinical ethics fellowship. The first is that many cases deal with end-of-life issues. The second is that there are many ‘lonely’ patients, who often die in the hospital ‘alone’. The two issues combined tend to raise some unfortunate but fascinating clinical PELSI (Policy, Ethics, Legal and Social Issues). One such issue is: Who should make medical decisions at a patient’s end-of-life when this patient lacks capacity and there is no surrogate? 

In the State of New York, we have the Family Health Care Decisions Act (FHCDA) that governs many of these issues, including end-of-life decisions in absence of a surrogate. (I will explain the legislative scheme below) However, this legislation does not solve all problems, as the written word leaves leeway for different interpretations and practices. One of these problems is related to decisions to withhold or withdraw life-sustaining treatment, and can be phrased as: Who should be the second, independent concurring physician in such decisions, in cases where the patient lacks capacity and there is no surrogate?

Let me explain. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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