Hellyer made her presentation at a Bioethics Grand Rounds that was sponsored by the university's Center for Christian Bioethics and by its Clinical Ethics Consultation Service. Roy Branson and Alice Kong lead the Center as its Director and Coordinator respectively. Gina Mohr directs the Consultation Service. Gerald Winslow, one of the medical center's vice presidents, and Betty Winslow, a professor in the School of Nursing, also helped to make Hellyer's visit to LLU possible.
Hellyer agrees that patients with "decisional capacity" and "strong support" are the easiest. With respect to the issues at hand, and not merely in a general way, these patients possess enough mental clarity, information and freedom reliably to decide among the available alternatives, one of which might be receiving nothing but comfort care until death comes. They also benefit from loved ones who are present and helpful.
When a patient lacks these, medical teams ask someone who knows him or her well enough to make a "substituted judgment." This is to be what the patient most likely would say, not what the close friend or relative might prefer. When thoroughgoing attempts to locate such a person fail, the team itself makes a determination as to what would be in the patient's "best interests."
Common sense and the relevant literature make it clear that when utilizing "best interests" considerations clinicians must take into account the patient's probable preferences. This is difficult because they know so little about him or her; however, in every case an honest attempt must be made to learn as much as possible. In no instance is it acceptable for clinicians wholly to disregard these subjective factors exclusively in favor of those that are thought to be completely objective.
It is difficult to imagine clinicians not doing their best to act in harmony with all they can learn about their terminally ill friendless patients. Yet Hellyer has apparently seen this happen enough times to become ethically concerned. Out of this concern, she and some her colleague have developed a protocol by which an appointed group of different specialists immerse themselves in everything that they can learn about the patient, including the narrative of his or life and as many of its subjective elements as possible, before rendering an educated guess about what he or she would probably want. This group's responsibility is to "befriend" the "unbefriended" patient.
Hellyer presented a case of an "unbefriended" patient who finally died more than 200 days after he was admitted into a medical center with a perforated ulcer that cascaded into many complications which eventually took his life. The medical team continued its therapeutic efforts perhaps longer than usual because the patient demonstrated an intense will-to-live and because he often said that he did not want to die.
Challenges emerged when his reachable relatives, who were not willing to make decisions on his behalf, suggested that his repeatedly expressed desire to live might not be reliable because he had been "mentally slow" all of his life. Things became complicated when psychiatry consultations yielded different results. They became even more difficult when one of the doctors suggested that perhaps the patient did not want to die because he was enjoying more attention and better care in the medical center than he had at any previous time.
This presented the possible option of letting him die despite his repeatedly expressed desire to live because he was "too mentally slow" to be taken seriously. The team was fortunately spared the difficulty of making this decision either way because the patient died while it was still doing its best to get him well.
This case easily perplexes. For one thing, ethical presumptions favor keeping patients alive unless doing so would only prolong their dying, or unless there is at least a preponderance of evidence which establishes that the patient does want to continue. In the case Hellyer presented, a patient repeatedly said that he wanted to live and no one—neither his relatives nor his immediate care givers nor his psychiatry consultants nor anyone else-- established that he was mentally unable to make this choice. Presumptions on his behalf, therefore, should have prevailed.
Introducing the possibility that the patient might have wanted to live because he was enjoying life more in the medical center than he had at any earlier time would seem to be irrelevant at best and invidious at worst. The easiest way to have solved this "problem" would have been to work with chaplains, social workers and similar specialists to provide him the communal support he so desperately needed. Letting him die because the only reason he wanted to live was that he was at last enjoying life seems odd.
"Best Interests" considerations are more than capable of handling cases like this one when they are employed as intended. Hellyer's call for "befriending" the "unbefriended" patient is therefore best understood as highlighting their most helpful features and introducing a protocol by which they can be more successfully utilized. Alternatives to "best interest" considerations are not needed.