December 5, 2013 | Posted By Marleen Eijkholt, PhD

Early November 2013: TB, a 32 year old deer hunter from Indiana, falls 16 feet from a tree while on a hunting trip and crushes his spinal cord. He injures his C3,4 and 5 vertebrae, but does not suffer any brain damage. TB’s prognosis includes paralysis from the shoulders down and potentially life-long dependence on a ventilator. His family asks the physicians if they can get him out of sedation and remove his ventilator, so that he can decide about how to proceed with his treatment. Once awake, TB hears his prognosis and asks to stop treatment. He dies one day after incurring his injury.

Several factors seem to have sparked the headlines and stir controversy, and I would like to focus on one of these. I question whether TB’s decision was and could be informed. Using this case, I propose that TB’s decision was perhaps a shot in the dark. I raise some of the pressing questions about informed consent in the clinical ethics context. I ask how we should ensure informed decision making, what we should do to enlighten patient’s perspectives and what we should do if patients refuse information that we consider material in the decision making process? 

TB’s decision was made extremely soon, i.e. one day after the injury. Yet, diverse reports seem to suggest that TB’s refusal was informed. He had discussed life in a wheelchair with his wife and indicated that such life would not be desirable for him. His explicit statements were made perhaps in the context of his sister’s job. TB’s sister was a nurse, and, allegedly, knew what life was like with a spinal cord injury due to her professional experiences. The reports seemed to imply that she was a good consultant for her brother and they could have had informed discussions. Adding both components, the situation would seem nearly an ‘ideally informed’ refusal in the traumatic circumstances.  

So why am I questioning the deer hunter’s decision? Previous research that I was involved in, illustrated that spinal cord injured (SCI) individuals’ decisions about medical treatment shift over time. This seems correlated to increasing appreciation of their quality of life with the injury. Severely spinal cord injured individuals, often young active men, come to some sort of acceptance of their injury and sometimes even attributing greater quality of life than before the injury. In another study we illustrated that health care professionals and spinal cord injured individuals perceive risks and priorities differently. TB’s sister was a nurse who probably had a particular perspective on what life was like as a spinal cord injured individual. Accordingly, I am concerned that the deer hunter was perhaps not well informed; he had not yet lived the life of a spinal cord injured individual yet and had not been informed by a person who suffered the same injuries

Do I see an alternative route and a solution for this challenge to TB’s consent or to informed consent in general? In the spinal cord and stem cell research context, I proposed that we should adopt a peer support model for decisions to participate in trials. However, this may not be suitable for all decisions, including end of life decisions. These decisions may be too personal, or people may shy away from such model and refuse information about the experience of other people. Perhaps TB would have declined to speak to other individuals with a spinal cord injury to hear about their experiences on a vent and their quality of life, especially if he was under the impression that he knew his situation. Should we have forced the injured perspective upon him?

Perhaps informed consent is always a shot in the dark: we don’t know what we don’t know. We can only contribute with as much information as possible. I hope that through my experience as a clinical ethicists I will be able to find more enlightened answers than I have now to the most challenging questions in the informed consent process: Which are the best means to do provide all the information to patients? How far do we go in forcing information on people to make ‘more informed’ decisions? How long should we wait until we accept that a patient has made an informed decision, and how do we prevent people from rejecting information that physicians feel is material to the decision? 

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.