
Dr. David Seres
The Clinical Ethics Case Study Series for the Food for Thought blog will explore topics and case presentations based on real patients that challenge nutrition support practitioners on an ethical level. As practicing clinicians of nutrition support, it is likely that ethical dilemmas are a daily part of your job. These posts are intended to inspire conversation and provoke thought on these challenging topics. Led by Dr. David Seres and other experts in ethics and clinical nutrition, we will help fill in the gaps.
By David Seres on behalf of A.S.P.E.N.’s International Clinical Ethics Section
The following is a discussion of the resolution of this ethical conundrum. The case has been presented, and the discussion that followed may be found in Part 1. If you haven’t read through the case and prior comments, I suggest doing so before continuing.
The Outcome
We formulated the parenteral nutrition (PN) carefully to avoid metabolic derangements. Although we were very conservative with macronutrients and volume, our patient became quite lethargic and developed shortness of breath due to congestive heart failure two days after starting PN. While the exact cause was unknown (fluid excess, nutrient deficiency, etc.), we were compelled to decrease the rate of the PN to 10 ml/h, where it stayed for the duration. Diuresis was successful in making the patient comfortable. The patient remained somnolent, but would on occasion roll over, look at the bag of PN, and smile. She died four days later.
Now that you know the final outcome of this case, let’s tease the issues apart and identify the unintentional conflicts this case demonstrates. In all of this, we are trying to protect the primary right of the patient—autonomy—while simultaneously trying to meet the patient’s stated goals.
Patient’s Right to Refuse Discussions
Our patient’s right to refuse certain discussions and her right to reject informed consent in the process made the usual conversations about risks and benefits impossible. My facility is fortunate to have excellent clinical ethicists, palliative care experts, spiritual care specialists, and patient care management professionals who all tried to open the door for a broader conversation. While such techniques as holding compassionate discussions to establish rapport, negotiating time-limited trials, and having conversations about why the patient might be fearful or averse to such discussions are the usual approaches, they were rejected quite quickly by the patient.
Patient’s Right to Demand Treatment

Photo by Jo Naylor via Flickr Creative Commons.
The patient always has the right to demand treatment, but autonomy extends to the clinician as well. There are established mechanisms for a provider to resign from a case in which their beliefs are in strong enough opposition to the patient’s demands. These beliefs may be related to a moral code, or, as in this case, the demand for the provider to do something that may be contrary to what was perceived to be in the patient’s best interests as defined by the goals the patient has specifically enunciated.
Personal vs Professional Opinions
Our opinions about the likelihood of a risk or the achievement of a goal is the key to educating patients in the informed consent process, and is the whole reason for us to be involved. However, unless invited, I believe that it is considered inappropriate for us to express our personal opinions about the acceptability of a quality of life or the reasonableness or acceptableness of risks. In other words, I should tell patients what I believe their outcomes will be, but, unless asked, I shouldn’t express personal beliefs about whether or not those outcomes would be acceptable to me. On the other hand, it is sometimes obvious that patients really desire our personal opinions, and I often ask whether the patient/family would like to hear what I would do. Patients and their families nearly always do want to know how I would personally handle a situation, but I feel strongly that we should ask before entering into this area of personal (as opposed to professional) subjectivity.
The Twist
The twist in this case made it all the more challenging. In my own ethos, I am less troubled giving someone PN in a situation such as this when I am certain they are making an informed decision. Informed consent is the process we take patients through to ensure they have autonomy, because autonomous decision making requires full knowledge of the risks and benefits of the decision being made. By the same token, the risks of PN, for as long as this patient had to live, were theoretical, while the distress she was experiencing was real, acute, and severe.
The Cost of Autonomy
Autonomy comes at a price. The price is that the burden of decision making is placed on the patient and family. I often wonder whether it is even possible for us to do a good enough job of educating patients and families in these situations to ensure that a truly well informed decision can be made. This, in particular, stems from the fact that we often haven’t a clue ourselves (or have personally differing opinions from our colleagues). Further, the way we discuss these issues with patients and families and ask them for a decision is a great way to abdicate our own responsibility for making tough choices.
Money Matters
The patient’s wealth was a red herring that should not be factored into the decision. There are days when all of us ask about the principle of justice in providing care for patients that we feel is futile. And this will be a prominent question in our next case. Should we as a society be spending all this money to care for people we know will not have the quality of life we ourselves would want? As Dr. Barrocas pointed out, the term “futile” is not particularly useful. (And to my eye, it frankly seems often an excuse to shut down and walk away from difficult situations.) The respect for patient autonomy demands that our judgments about a patient’s quality of life not enter into the decision making (unless invited, as discussed above).
As a society, we have chosen to exclude societal justice from the ethical discussions of an individual patient. But what if there were thousands of lives in the balance? Suppose, for instance, if the patient in question had the potential to fund the program, or if there were a genocidal dictator from another country. Could we act differently in either case? Not based on current ethical and legal principles. Would we be tempted? In all honesty, I know I would have to rein in my emotions, but that is what an ethics committee is for: to help us keep our egos out of the process. Ethical behavior requires that we acknowledge our own feelings and find ways toward objectivity, not that we never have the feelings. To deny that we have these feelings is in itself a dishonest act and puts us at risk for behaving unethically.
Using PN to Treat Anxiety
Using the principle of secondary effect, the PN was justified as a means of treating the most severely distressing symptom. The theoretical risk of PN was outweighed by the acute need and the anticipation that the treatment would be effective (eg, the presence of PN would treat the anxiety). A conversation was held with the patient’s spouse, without the patient, in which the concerns about risks were able to be aired. This was acceptable in that the patient had by then indicated she would prefer any discussions about her care be held with her surrogates. The spouse assured me the patient would choose this path, regardless of risk.
Final Thoughts
Although this case occurred some time ago, as I write about the patient’s smile in reaction to the presence of the PN, I find that I am still quite torn.
I would like to thank my colleagues working in clinical ethics, palliative care, spiritual care, and patient care, and those who commented on the first part of this post, who generously made time to discuss the case with me despite being excluded from direct participation.
This was indeed a challenging case. We are very much looking forward to an ongoing dialogue. Watch for our next case, which will be presented soon. If you have a case you think may stimulate interesting discussion or for which you’d like to see different perspectives, please send a brief description to Jennifer Kuhn at [email protected] .
See Part 1 of this case.
Dr. Seres has masterfully presented a complex ethical case with similarities to many of the challenges nutrition support and other healthcare teams face on a daily basis. His concise discussion in part 2 provides a framework for applied ethics. I want to thank him, his team and the other blog contributors for an honest, collegial and diverse discussion of a topic that is often avoided in our daily interactions. Perhaps the most useful instrument in healthcare today is the retrospectoscope. which in this instance, in my view, demonstrated appropriate, if not optimal, management despite multiple restrictions.. Congratulations to the entire team including the patient, and significant others.
Dr. Seres thank you for the thought provoking discussion on the resolution of this ethical conundrum, which you outlined last month in your first blog. I enjoyed seeing how other clinicians felt about the case and what their focal point was in the dilemma.
As healthcare clinicians dealing with nutrition, ethical dilemmas are not uncommon. This case has added to the body of knowledge on how a healthcare team dealt with a clinical ethics case and provided a resolution reflective of meeting the needs of the patient.
Additional opportunities to learn about clinical ethics from an interprofessional, international group of clinicians will be presented during Clinical Nutrition Week 2014 in Savannah, Georgia
http://www.nutritioncare.org/Clinical_Nutrition_Week/Clinical_Nutrition_Week/.
CREATING A HEALTHCARE ENVIRONMENT TO PREVENT NUTRITION SUPPORT ETHICAL DILEMMAS
Tuesday, January 21, 2014 1-2:30 PM
Albert Barrocas, MD, FACS, FASPEN Podium Session Moderator
John R. Wesley, MD, FACS, FAAP, FASPEN Audience Session Moderator
Denise Baird Schwartz, MS, RD, FADA, CNSC Speaker topic: Development of a Hospital Process to Prevent Nutrition Support Ethical Dilemmas
Cheryl Monturo, PhD, MBE, ACNP-BC Speaker topic: Preventing Ethical Dilemmas in PEG Placement in Older Adults with Dementia
Humberto Arenas Márquez, MD Speaker topic: International Perspective on Nutrition Support Ethical Dilemmas
Sharon M. Durfee, RPh, BCNSP Panel Member
Alessandro Pontes-Arruda, MD, MSc, PhD, FCCM Panel Member
David Seres, MD, PNS, ScM Panel Member
I have some specific questions about the case, but would rather wait to see what other individuals (healthcare and non-healthcare) comment about from their perspective of the outcome.
Denise Baird Schwartz, MS, RD, FADA, CNSC
Chair International Clinical Ethics Section (ICES) of A.S.P.E.N.
Having arrived late to the discussion, I join Denise Schwartz, Drs Alessandro Pontes-Arruda, Albert Barrocas, and others in commending Dr David Seres for an excellent thought-provoking Clinical Ethics Case Study, and the follow-up resolution of several of the many complexities of the case. The presentation and commentary certainly brought increased focus to the importance of preventive clinical ethics, advance care planning, the potential role of a Palliative Team approach, sorting out one’s own ethical bias, and, finally, focusing on patient-centered care!
In addition to the Clinical Ethics presentation and discussion during Clinical Nutrition Week 2014 cited by Denise Schwartz above, the newly formed International Clinical Ethics Section (ICES) of ASPEN will be holding our first section meeting at CNW 14 on Monday, January 20, 2014, form 6:45 to 7:45 PM. I encourage you to join the section and attend the meeting! We will re-visit the important issues surrounding forced tube feedings of hunger strikers, and ethical feeding issues in hospitalized patient care.
John R. Wesley MD, FACS, FAAP, FASPEN
Adjunct Professor of Surgery
Feinberg School of Medicine
Northwestern University
Chair Elect, ICES
Thank you all for your interest and commentary. This post will stay open so everyone has an opportunity to ask questions, and to provide ideas for alternative solutions and dissenting views.
Dr. Seres I have several questions about the case study of the 42-year-old woman battling metastatic cancer of the biliary tract, now severely cachectic and unable to eat, with life expectancy of a few days to weeks.
You stated, “She only wants to discuss things that will extend her life, which is her primary goal regardless of cost or discomfort. Her greatest discomfort currently, over and above any symptom or physical pain, is the emotional distress she is feeling about not being fed. Her boyfriend and sister, meet everyone beforehand with strict instructions not to mention death, palliative care, DNR, or even possible complications. They produced a document signed by the patient confirming this.”
Initial Questions:
1. How long did it take for a copy of her advance directive to be placed on her chart or scanned into her electronic health record?
2. How many days from admission to initiation of TPN, since she was unable to take nutrients via the GI tract?
The advance directive was in the chart before the admission. One of the advantages of a connected electronic record.
TPN was started about 10 days from admission. The problems eating developed about 3 days after admission. Addressing the gut dysfunction symptomatically was attempted first. It was after about 7 days that the patient started expressing outrage that the conservative approach was failing and she was “starving”.
This was an excellent discussion. I have a few thoughts…
Dr. Seres mentioned that “the patient is someone used to having her way and having control over her life and her ‘staff’… ” In my many years of working on an inpatient oncology unit, I have found that people want to control their illness and mortality in the same ways as they lived their professional lives. A patient of mine, a retired union negotiator, had esophageal cancer. He “negotiated” the addition of a soft boiled egg to his clear liquid diet. Once he realized he could not swallow it he consented to the clear liquid diet and pretty quickly thereafter, placement of a gastrostomy tube. The point is that even before I knew what he did for a living, it was obvious that he was used to bargaining for what he wanted, and he could not help but continue to operate out of his professional mindset.
While we must follow guidelines and evidence based practice, we must also remember that before our patients became “patients,” they lived their day-to-day lives as CEOs, school teachers, realtors, doctors, nurses, etc., before illness became their new normal. While we may not agree with what they want, and it might not be in their best interest, I feel that is is important to consider their perspectives. This frequently makes having an open dialogue on difficult topics a little easier to accomplish.
David, thank you for sharing such an interesting case!
I am reminded of Carol Gilligan’s book, In A Different Voice (1982), in which she describes the different responses an 11 year-old boy and girl give when presented with the following problem to solve: A man named Heinz has a wife who is ill, and knows that there is a drug at the pharmacy that could save her life, which he cannot afford to buy. Should Heinz steal the drug?
The boy focuses on the sentence this way: SHOULD Heinz steal the drug? He discusses it as a logic problem, what to do when there is a conflict between the property rights of the druggist and the potential to save a person’s life. The girl focuses on it this way: Should Heinz STEAL the drug? She envisions the problem to be one of relationships, that the puzzle lies in why the druggist would not give Heinz the drug, and suggests ways in which that issue could be resolved so that Heinz would get the drug without stealing it.
This ethical dilemma is this case is, “Should we start PN to treat this patient’s suffering even though it will not prolong her life?” The presumption in the discussion is that the question is, Should we or should we not start PN? My question is, as a consultation-liaison psychiatrist, How should we treat the patient’s suffering? From the description in the initial post: “Her greatest discomfort currently, over and above any symptom or physical pain, is the emotional distress she is feeling about not being fed. She is obsessed with this, talks about it constantly, cries about it, and begs for TPN.” Although it’s not stated directly, it’s likely, given that this is far from her normal state, that she is also mildly delirious as well. It’s not uncommon that delirious patients will present as highly anxious and fixated on one particular symptom or one part of their treatment.
So my first thought in a situation like this would be to evaluate the patient and treat the anxiety and delirium directly with a low-dose neuroleptic, and see if the preoccupation with TPN persisted or not. If this did not work, and other options for treating the patient’s psychological suffering failed as well, you could consider starting PN purely as an anxiolytic. But the psychiatric evaluation would have also helped with the ethical dilemma by giving you an informed opinion about the odds of the patient feeling better psychologically if TPN were started, so that the surrogate could better weigh the risks and benefits.
In any case, I think this way of looking at the problem helps clarify where the issue is in a case like this. It’s actually a question of method — HOW to treat the patient’s suffering — where PN is only one of the options available.
The most important thing about this whole story is that the fact that the patient smiled whenever she saw the PN bag means you made the right choice. In the end, she died more comfortably because you’d helped relieve her suffering. And that is the best result that any of us can hope for.
Although every patient is unique from their values, culture, faith, illness, and family situation, this case study has provided so many opportunities for learning. This past week is the second time that I have been able to incorporate a concept from the case into my clinical practice of ethical decision-making. Thank you to Dr. Seres and all who added to the discussion.
To continue the discussion, if a similar case occurred at your facility, what would be the role of the clinicians listed below in preventing the ethical dilemma? These are some of my initial thoughts, please add your comments to the discussion.
1) physician: as the patient care coordinator
2) nurse: care coordinator at the bedside; perhaps staffing allowed just a few nurses who knew the patient well to take care of her
3) dietitian: coordinator of the nutrition care process within the first 2 days of the hospitalization, as this patient would have been screened at high nutrition risk
4) pharmacist: would have been involved with the decision about parenteral nutrition, prior to the compounding addressing the “clinical indication” section of the form