Topic: Autonomy
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 28, 2016 | Posted By Claire Horner, JD, MA

Gestational surrogacy contracts have been in the news again recently as a gestational surrogate reports that the intended father, having discovered that she is expecting triplets, is demanding that she undergo selective reduction to abort one of the fetuses.  Situations such as these, while often not reported, are not necessarily uncommon.  In 2013, a gestational carrier was offered $10,000 to abort when a second trimester ultrasound discovered congenital heart and brain abnormalities.  Despite a well-established Constitutional right to privacy that includes a pregnant woman’s right to procure – or refuse – an abortion, surrogacy contracts routinely include provisions that not only prohibit a surrogate from having an abortion unless there is a medical need, but also give the intended parents sole discretion to determine whether the surrogate should abort where there is evidence of a physical abnormality or other issue.  Such provisions have not been tested in court, but would almost certainly be unenforceable based on the surrogate’s Constitutionally-protected right to reproductive autonomy.


In India, where there is an estimated $400 million surrogate tourism industry, women agree to be surrogates in exchange for $5,000-7,000, which is far more than they could make otherwise.  In many clinics, surrogates live in dormitories for the duration of the pregnancy and their food and medical care is provided by the clinic.  There are also reports that some clinics have policies against pregnancies of 3 or more fetuses – meaning that selective reduction may occur as a matter of course to reduce the number of fetuses to 2 or 1.  If this is in fact happening, are the surrogates (or even the intended parents) aware of what is happening?  Are they given a voice in the medical care and treatments they receive?  Or are the decisions made by the intended parents or the clinic, and simply imposed on the surrogate?


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 14, 2015 | Posted By Wayne Shelton, PhD

The role of family surrogates in providing a voice for incapacitated patients is of crucial importance. Usually, surrogates have the best interests of the patient in mind and try to work with the physician in charge to provide the best treatment possible for the patient. In most cases there is agreement between the surrogate and the physician about the treatment plan and the goals of care. But as those of us who do clinical ethics consultations know, there are some cases, maybe 5% or fewer, where there are serious conflicts between surrogates of patients lacking capacity and physicians. I want to briefly explore a type of conflict that we seem to be seeing more often—when the surrogate attempts to get too involved in the medical management of the patient. Let me use a couple of sample cases to illustrate the type of conflict I have in mind.

The first is the case of an elderly patient with dementia and with multiple medical problems, including severe pressure ulcers. This patient requires regular dressing changes for the pressure ulcers in order to keep them clean and well managed, requiring the patient to be turned, which causes her significant discomfort. When these dressing changes happen, the standard of care is to make sure the patient suffers as little as possible, so a small amount of morphine is given. But the family surrogate informed the nurse that she should not use morphine, as she wanted the patient to remain as alert as possible at all times. When the nurse tries to perform the dressing changes without giving morphine the patient groans, grimaces, and appears agitated and in pain. The nurse feels distraught that she is causing the patient to suffer unnecessarily.

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.

November 20, 2015 | Posted By Benita Zahn, DPS

I like watching a doctor drama as much as the next person. But I don’t watch it like my friends. That’s because I’m always on alert to the bioethical issues playing out on the small screen. Often the show writers get the issues right and the program, along with its entertainment value, serves as an educational tool for the community. But when they get it wrong my forehead wrinkles and I grit my teeth. And that’s just what happened while watching a recent episode of the long running ‘Grey’s Anatomy’.

The show centered around a female patient who was diagnosed with a pituitary tumor that was causing her to add inches to her height but more importantly, threaten her life. She was given two options: surgery or probable death. The chief of surgery, the persuasive and powerful Dr. Miranda Bailey ( played by Chandra Wilson) made a clear case for surgery. But the patient wasn’t buying it and wanted to be released from the hospital. Here’s where my brow began knitting. The good Dr. Bailey wouldn’t let her go.

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 23, 2015 | Posted By Wayne Shelton, PhD

The issue of truth telling in medicine was a lively concern in the early days of modern medical ethics during the 1970’s. A new moral awareness had emerge that provided a clear moral rejection of the paternalistic approach taken in the physician-patient relationship that prioritized the traditional values of beneficence and non-maleficence over truth telling. Of course the key development that fueled this new moral perspective as well as the growing passion for medical ethics was the newfound sense that arose beginning in the 1960’s that patients with capacity have a fundamental right both to refuse unwanted treatment and give voluntary informed consent to treatments they were considering. It became obvious to students of medical ethics that if patients are to be able to exercise their right to give voluntary informed consent they must receive a full and accurate disclosure of the relevant information necessary for them to make a decision.

Up to the early 1960’s, patients coming into the health care system very well may not have had an opportunity to give voluntary informed consent. Giving patients this opportunity just wasn’t part of the medical culture. In the early 1960’s it was common for oncologists to not disclose a diagnosis of cancer; by the late 1970’s there was almost universal agreement that full disclosure was the expectation. The full moral force of the principle of respect for patient autonomy happened relatively quickly, especially after the Belmont Report of 1978, which articulated the basic principles of medical ethics (though non-maleficence was subsumed under beneficence). There is no question that the physician-patient relationship has been evolving ever since with new levels of expectations and involvement of patients and their surrogates. There is now universal agreement that physicians are expected to be truthful to patients and accurately disclose their medical condition, including diagnosis and prognosis. Without this first basic step of truth telling in disclosing the medical facts to the patient about their condition, patients cannot exercise their right to express their preferences and wishes about medical treatment and care goals, and specially give voluntary informed consent to medical interventions to treat their condition.

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.

November 17, 2014 | Posted By Wayne Shelton, PhD

Let me emphatically state at the outset of this short blog: I have always thought the elective termination of pregnancy (ETOL) was a serious moral issue. As I have taught students over the years on this topic, to fully appreciate the moral conflict around abortion (or any other moral conflict) one must be willing to put oneself in the middle of two important value positions. In other words, one must be willing to hold and take seriously in one’s mind simultaneously two opposing thoughts or value positions in order to weigh them fairly.  

Though I don’t think that a fetus is a person with a personal or social identity, it is biologically human—and that alone is a relevant piece of moral information. The fetus has a unique genetic code and has the potential to grow to full term into a new baby and eventually grow into a child, adolescent, and adult human being. Because a fetus has the potential to become a full-fledged member of the human community, all things equal, we should not destroy it. But rarely in human life are all things equal.

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 3, 2014 | Posted By Paul Burcher, MD, PhD

I was at a conference last week in medical ethics, and I was surprised by, or perhaps appalled at, the attitude displayed by many of the philosophers regarding the importance of medical knowledge in medical ethical decision making. Several of them proudly announced a total ignorance of the medical issue they were speaking on, and also showed no interest in what I would call “real world” implications of their conclusions.  Although I have a PhD in philosophy, I am not a philosopher in the sense that I am capable of, or interested in, spinning arguments from “thin air” with no grounding in medical facts, and no implications for real medical practice.  Medical ethics must begin in real life issues and problems, and end with equally real and meaningful conclusions that can be applied, and sometimes even empirically tested. 

This is not to say that philosophers cannot make good, or even great, medical/clinical ethicists. But they need to begin with a healthy respect for the way in which the “facts on the ground” inform the ethical decision-making.  A brief example illustrates my point.  In Hilde Lindemann Nelson’s famous article explaining narrative ethics, she discusses the case of Carlos and Consuela. Carlos is an HIV positive gang member wounded in gang violence, who is recovering from his injuries in a hospital.  He is now ready for discharge, but needs dressing changes at home.  He wants his sister Consuela to do the dressing changes, but he insists that she not be told about his HIV status.  While Dr. Lindemann Nelson uses this case to make several excellent points about the limitations of principle based ethics, one aspect of the question, crucial to any ethical reasoning on the case, is obviously the transmissibility of HIV infection through dressing changes.  This “fact” is an essential aspect that underpins any ethical judgment regarding the case.  The conflict between patient confidentiality and duty of nonmaleficence (toward Consuela) pivots in part on the fact that HIV is not readily contagious, and simple universal precautions should make the risk to Consuela essentially nil.

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 24, 2014 | Posted By Paul Burcher, MD, PhD

I was recently surprised to read in the New York Times that a woman had undergone a cesarean section despite her refusal to consent to the procedure. The details of the case are not entirely clear from the article, so I do not want what follows to be understood as a specific comment on this case. However, the source of my surprise was my assumption that the ethics of refusal of consent were not in dispute.  The American College of Obstetrics and Gynecology has taken a clear position on this: it is not permissible 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 the following statement:

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 Ethics cannot 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. 

This committee opinion gives six strong and compelling arguments for these conclusions, and I will not repeat them here, but I encourage readers to review them.  What I would like to now focus on is the thinking that may lead some physicians to believe it is ethically permissible to override a patient’s autonomous choice.

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.

February 17, 2014 | Posted By Bruce White, DO, JD

Last month, a New Mexico trial court judge ruled that a terminally ill patient had a constitutionally protected right to aid in dying from a physician without risking criminal prosecution for assisted suicide. Judge Nan G. Nash of the Second District Court in Albuquerque based her opinion in the New Mexico Constitution: “This court cannot envision a right more fundamental, more private or more integral to the liberty, safety and happiness of a New Mexican than the right of a competent, terminally ill patient to choose aid in dying.” Thus, the state became the fifth to permit physician-assisted suicide, following Oregon (1997, approved by voter referendum), Washington (2006, approved by voter referendum), Montana (2009, allowed by state supreme court opinion), and Vermont (2013, enacted by the state legislature).

The case was brought by two oncologists (Drs. Katherine Morris and Aroop Mangalik) who asked the court to clarify the state’s assisted suicide law and allow them write a lethal dose of a drug for a 49-year-old patient (Aja Riggs) with advanced uterine cancer. Critical to the case may have been the December trial testimony from the patient: “I don’t want to suffer needlessly at the end.”

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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