The following quotes exemplify collaborative clinical care. In the first example, the physician steps outside his comfort zone to provide medical care based on the expressed wishes of a 30-year-old man dying of an advanced brain tumor: “The issue for me was letting go of control. He was going 4 hours away to a fishing cabin and going on a boat. I was really nervous…what if he all of a sudden crashed there? It took me a while to get used to the idea that he needs to be able to do what he enjoys doing, and everybody knows that there’s a risk.”
In a second example, the physician describes collaborating with the family of an 85-year-old woman suffering a massive stroke: “Having heard from the family that they understand that Grandma has had a big stroke and isn’t going to survive…then what wishes do Grandma and the family have? Have they ever discussed this sort of situation?”
In both these examples an understanding of the patient/family experience directs the clinician toward appropriate end-of-life care and is a major source of the collaborator’s power.
Guide
As a guide, the clinician actively and personally seeks solutions for the patient based not only on the medical facts (consultant) and the patient’s values and preferences (collaborator) but also on the guide’s greater understanding of the medical context. In essence, the guide not only knows why and where the patient and family prefer to go but also how to get there.
The following quote demonstrates a clinical application of the guide role. The physician first collaborates to understand the resistance of a terminally ill patient to hospice care:
“They had been very resistant to hospice for reasons that I wasn’t quite clear on. It wasn’t until I was in the home and listened to them talk that I realized they viewed hospice as ‘people are giving up on him.’ I think nobody really was talking to the patient about whether he was willing to give up or if he was ready to die.
“Once patient and family concerns were understood, the guide role was employed: I told the wife and family, ‘We’ve maxed out our medical therapies. There’s not much more we can do for him physically, but perhaps there’s something we can do for him spiritually and emotionally.’ When it was presented to them that way, they were much more understanding. We talked about hospice philosophy and looking at death as a part of life, saying: ‘That we’re not going to resuscitate does not mean do not treat.’ That’s where I came in more as the guide and said: ‘This is what I think is reasonable. What are your expectations? What do you want, Billy? And what do you want, as far as [his] wife and kids?”
The guide role requires that the clinician interpret the patient’s experience, integrate this interpretation with the clinician’s understanding of the clinical situation, and make a recommendation based on the guide’s personal and professional understanding of the situation. The power of the guide role emanates from the clinician’s understanding of how to use the medical system to see that the goals of patient and family are realized.
Discussion
The results of our study are consistent with reports over the past 3 decades by researchers, educators, and social critics who have explored how health professionals provide end-of-life care.23-29 Despite their varying perspectives, all reflect a common theme: the need to provide care based on the unique illness experience and values of the patient and family. The majority of clinicians in our study spoke of the importance of their relationships with patients and families. More than 50% of all interview commentary addressed clinician issues of relationship and personal meaning when providing end-of-life care.
The descriptions of consultant,30 collaborator,31,32 and guide33 confirm previous theoretical discussions regarding the nature of roles and relationships between patients and physicians. The guide is the most complex of the roles described by our study cohort and lends itself to ambivalence on the part of clinicians, in light of its potential to be misunderstood as paternalism. Yet, given the vulnerability and dependence of many patients who are terminally ill, the guide provides these patients with structure, safety, support, and care—based on the patients’ values and goals—reminiscent of the role of a nurturing parent.34
The personal nature of the decisions the guide facilitates reflects the reality of medicine as a moral enterprise.34,35 Having generally witnessed many more deaths than the patient, the guide has knowledge regarding the processes of dying and medical systems that is instrumental in assuring that the desires of the patient and family are realized. A knowledge of patient and family, an appreciation of the futility of the medical situation, and an insight into the process and systems of dying afford the clinician an opportunity to shape the death experience; as Nuland36 described: “Each of us needs a guide who knows us as well as he knows the pathways by which we can approach death.”