A cardiologist shared his willingness to learn from an elderly patient who challenged his traditional treatment paradigm by refusing a recommendation for bypass surgery:
Maybe my bias was to do what I had been trained to do, which was to send her for bypass, put her through some misery, and maybe not have changed the outcome that much, you know maybe added a year or so, put her through quite a lot of trauma. But she removed my personal bias.
Vulnerability was typified by one participant who related:
This one was hard for me personally…. It was painful for me, because I really liked him, but rewarding on the other hand because I was able to really support him in his autonomous decision to do what he wanted to do.
Death attitudes, whether avoidant or accepting, were also key elements in this category. A nurse participant suggested that death avoidant attitudes were major factors in negative encounters:
But this particular physician can sidestep some of these tough conversations. And that doesn’t make him a bad physician, that’s just his style. He doesn’t do well with those conversations. He’s actually quite a good oncologist, just bad with end-of-life conversations.
A sufficient knowledge base and skill level in caring for dying patients also were important characteristics. Most participants stated their lack of formal education in palliative care as an impediment to providing good care in these settings. As one physician candidly shared, “We learn end-of-life care by the seat of our pants, by the mistakes that we make.”
Patient Characteristics
Patient characteristics such as attitudes, values, and knowledge were important components of participants’perceptions of positive and negative encounters. Within the context of positive encounters, patients were described as proactive, information-seeking, educated, having a clear vision, and focused on reality. Patients in these settings were perceived as facing reality from the onset of diagnosis and being capable of finding something positive in the face of death.
He [the patient] realized that not everything in life is fixable. He said, “This is no tragedy [death]; this is what happens in life.”But as treatments didn’t do any good anymore, he made a decision. He said, “I’ve got to get out and enjoy life.”
In contrast, patients in the negative encounters were perceived as fearful, demanding, untrusting, continually searching for ways to fight the disease, unwilling to give up, and living in chaotic family systems. One patient who had battled cancer for 6 years and spent the last weeks of his life in the intensive care unit was described by a nurse participant:
He [patient] did not want to give up, wanted to be positive, did not want to hear a negative thought, a negative piece of information, and had a physician who kind of went along with that …[which] created a big problem because here you have a man who’s dying basically, and they [family] don’t want to hear it. So that’s probably the problem in a nutshell.
Interpersonal Relationships
Interpersonal relationships were networks of family members, friends, and care providers that either facilitated or impeded the encounters. Participants identified multiple elements in positive encounters: the provider’s sense of connection and a congruent belief system with the patient, patients with supportive relationships with family members and friends, and patients with an existential or spiritual support system. The provider’s sense of connection was captured by an oncologist who related: “We connected on a personality level. I was a shepherd of his, so to speak…personally. I connected with him probably more than I do with most people.”
These positive relationships were also strengthened by common belief systems that were inclusive of patients’ existential or spiritual beliefs. One participant stated, “We could talk about spiritual issues, and maybe that was the thing that bonded us.”Participants also identified coherent and consistent patient belief systems in their positive encounters, “He talked openly about dying and that he wasn’t afraid. He felt that spiritually he was ready.” Also, in their depictions of positive encounters participants cited families and friends who provided emotional support yet allowed for the patient’s wishes to be honored.
Negative encounters were highlighted by strained uncomfortable provider-patient relationships characterized by a lack of trust. Participants identified patients and family members in conflict, hindering supportive relationships. These strained relationships were marked by a lack of acceptance of diagnostic and prognostic information by both patients and families. This lack of acceptance would be manifested in anger and hostility toward providers as one participant related:
He would burst into tears and say, ‘you can’t just let her die. You have to do everything.’ So there was never a no code on this woman even though she was clearly end stage.