Methodologic validation
The themes, models, and 2 interview transcripts were reviewed by 2 expert consultants with experience in qualitative research on end-of-life care and chronic debilitating disease. They assessed the validity of the research process and model development.21,22 These experts confirmed the methodologic approach, affirmed that the transcripts supported the coded model, and noted that the results were consistent with their own past research experience.
Face validity faculty interviews
Long interviews were conducted with a convenience sample of 8 faculty at 2 other residency sites. Researchers described the previous interview process and presented a written summary of the roles and relationship model coded from the data. Dialogue was encouraged with nonspecific prompts to enrich the data and avoid interviewer bias. Interviews were recorded, transcribed, and coded by the researchers to assess face validity and further develop the roles and relationship model using a grounded theory approach.
Face validity focus groups
Two focus groups were conducted with a total of 10 faculty at 2 additional sites. The entire model (themes, communication, roles, and relationships) was presented, and dialogue was encouraged. The researchers recorded, transcribed, and reviewed the focus groups to further assess face validity and refine the model.
Content validity
In a manner identical to that of the focus groups, the researchers presented the entire model at 2 of the 3 sites where faculty provided the initial 20 interviews. These sessions were audiotaped, transcribed, and reviewed by the researchers. The model presented was considered a valid, clinically plausible summary of the content of the initial interviews.
Results
Content analysis of the roles and relationships described by the study cohort revealed 3 distinct clinician roles in the provision of end-of-life care that we termed “consultant,” “collaborator,” and “guide.” All roles were viewed as important; none was more valuable than another; and the roles appeared to build on each other, often merging. Roles were implemented fluidly, with clinicians moving from one role to another as circumstances dictated. Although clinicians tended to describe successful cases, they freely discussed the challenges of end-of-life care, noting that less-than-ideal results were frequent. Thus, the models were described as “best practice” rather than routine care.
Consultant
The consultant provides expert medical information to the patient and family based on the biomedical model and the disease process. The power of the consultant role emanates from the clinician’s medical authority and special knowledge. The consultant presents information to help the patient and family understand the diagnosis, prognosis, and treatment. Once this knowledge is understood, the patient and family determine its meaning to them and decide on treatment. If the patient or family cannot decide or understand the medical implications of their particular situation, the consultant decides based on the medical facts.
A pediatrician illustrated the application of the consultant role in 2 situations involving newborns with severe heart anomalies. Here the physician describes the difficulty of using only medical facts to assist the family in deciding whether to discontinue the ventilator: “I remember saying: ‘The only thing that’s keeping the baby alive at this point is the ventilator. How do you feel about making the decision to turn that off?’ I remember it was a very cruel thing to have them make the decision.”
The physician continued: “Next time I said: ‘We have to sit down and talk about how your baby is doing because he died, and I’m going to turn off the machines now.’ I don’t think we should put them in the position of having to make this decision. We should make this decision and tell them what we’re going to do.” In this situation the clinician employed biomedical expertise to determine the appropriate medical care and outcome for the patient and family. In both cases the decision centered on continuing or discontinuing a medical intervention (respirator) and avoided discussion of the parents’ affective experience. Hallmarks of the consultant role include a biomedical focus, disease-centered decision-making processes, and the clinician’s assumption of authority based on biomedical expertise.
Collaborator
The collaborator exchanges information with the patient and family to promote a common understanding of the diagnosis and illness experience, working with them to choose a treatment path. The collaborator incorporates all components of the consultant role and additionally requires the clinician to understand the patient/family experience. The collaborator considers patient and family issues that need to be addressed to understand the medical facts, appreciates their past experiences with serious illness, determines what information would be difficult for them to accept but would benefit them if they were challenged to confront it, and recognizes that the patient and family hold ultimate responsibility for making treatment decisions.