Part 2: Between a Rock and a Hard Place: Clinical Ethics in Action—The Outcome

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.

The views expressed in this post are those of the author, and do not necessarily reflect the views of A.S.P.E.N.