Physician and Nursing Perspectives on Patient Encounters in End-of-Life Care

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Original Research

Physician and Nursing Perspectives on Patient Encounters in End-of-Life Care

J Fam Pract. 2001 February;50(2):155-162

References

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Participants cited the lack of an existential orientation or spiritual reference in many patients with whom they had a negative encounter. An oncology nurse typified this perspective:

Some people are clearly afraid to die. I have seen the people who don’t seem to have much of a faith base, not religiously speaking but spiritually. I mean, if their heart and soul and mind aren’t all connected, and they don’t have a sense of purpose, of a beginning and an end, those people are very frightened to die. And some have a religious base, and some don’t. But it’s that sense of the beginning and the end. We all are born, and we’re all going to die. And people who don’t have that sense don’t do well when it comes time to die. Emotionally it’s very difficult for them.

Prognostic Certainty/Clarity

Participants identified the precision of the patient’s diagnosis and prognostic accuracy, as well as the concomitant therapeutic plan, as a facilitating factor in positive encounters. A nursing participant who works with amyotrophic lateral sclerosis (ALS) patients was representative of this orientation:

I guess we start out with the diagnosis basically [following a lengthy diagnostic work-up] and talk to them about what the diagnosis is, that it is a terminal disease.

Another participant shared that prognostic criteria provided clarity and assisted in anticipatory care planning. A pulmonologist/critical care physician shared:

[We] watch the pulmonary function decline, and they turn dyspneic enough—it’s clear, you know—we’ve got great criteria for respiratory failure, and those criteria are very black and white.

In positive encounters, both patients and physicians were able to discern with greater clarity the timing in transitioning care from cure to comfort. For some this was based on the clarity of prognosis, while others used prognosis and an analysis of the burdens and benefits of continued treatment within their conceptualization of quality of life. A family physician related the following:

I was on call, and there was a lady who was from out of town visiting a family, who had a pretty massive stroke…the family thought long and hard about “do we put a feeding tube in her”and the swallowing study showed she could swallow. But she wasn’t able to tell us what she wanted. And she wasn’t making a lot of progress…. They talked with her pastor, who had been her pastor for approximately 40 years…. They decided not to feed her or give her any intravenous fluids. They thought she had a good life, she’s had a lot of faith, she’s told them she’s ready to go and that type of stuff.

Prognostic clarity greatly enhanced positive encounters but was difficult to achieve even for experienced physicians, one of whom stated that, “you can’t outline, you know, the myriad different things that can happen.”However, participants perceived that for family members, clarity of ten was difficult to achieve, especially when interacting with multiple physicians. Patients in intensive care unit settings with multiple specialists and revolving call coverage made prognostic clarity difficult to achieve for some family members. Family members were depicted as misinterpreting different versions of the same story or being provided conflicting information:

He [the patient] had multiple physicians who were trading off and on day to day so there wasn’t the continuity…and so the family heard many different versions of what his prognosis was.

Decision Making

Participants described the degree of unanimity or being on the same page with patients and family members with regard to outcome expectations and treatment decisions as an essential element, one that differentiated positive and negative encounters. Being on the same page was facilitated by shared provider/patient characteristics, such as death attitudes and enriched interpersonal relationships, and by prognostic clarity.

Negative encounters were marked by conflict due to a discongruous assessment or care plan among providers or between family members and providers. One nursing participant described conflict with a physician son who limited the amount of pain medication administered to his dying mother. This unilateral decision to reduce pain medication left the participant feeling conflicted regarding the quality of the patient’s dying:

She had the abdominal surgery and her belly full of cancer, so she had lots of reason for pain, although his [son’s] perception was she had no reason for pain…. The whole thing just, just didn’t feel good to me.

Decision making was an ongoing process that included seeking, sharing, hearing, and processing information within one’s value system. Mismatched expectations for treatment outcomes were inherent in negative encounters and were promoted by a patient or family member’s inability to assimilate and process information accurately. One physician participant shared his perception of unrealistic expectations of family members due to technology: