Table 9 Emotion Outcome

Positive emotion

Satisfaction with overall caregiving; patient’s serenity with own condition [45, 46, 49, 55,56,57,58]

Events that align with patient’s wishes [15, 17]

Distress

Patient decline, conflict between exhaustion and increasing patient needs, social isolation, breaking a promise to the patient, family conflict [27, 29, 30, 36, 37, 42, 45,46,47,48,49,50,51, 53, 56, 57, 60, 61, 63]

Complicated dying, moral distress about patient choice to die [15, 17,18,19,20, 67,68,69,70,71]

“The ‘I-killed-my-mom thing’ is big, still. Because it’s the truth—how do I come to some resolution around that?” (Starks et al, p117)

“There’s a point where you’ve done, you’ve gone overboard. You hear the 110% effort stuff; well I think it’s probably 180% effort…. You just, you become a basket case.” (Sinding, p.157)

Positive reappraisal

Caring provides opportunity for growth, respect, closeness, or strengthening family ties. Death allows patient to escape suffering. Escalating need for care results in more clinical resources [26, 36,37,38, 44, 46, 48, 51, 53,54,55,56,57, 60,61,62,63, 65].

Clinicians who would not facilitate hastened death but were supportive in other ways; in retrospect, hastened death seen as right choice [15, 16, 18, 19, 70]

“I mean it’s so wonderful that you can give someone yourself. I mean that’s a real thing to do. And that they’ll let you.” (Sinding, p. 157)

Revised goals

Reducing hopes for patient’s future, deciding to encourage the patient to “let go” to avoid further suffering, admitting patient needs institution-based care [27, 28, 30, 32,33,34, 37, 38, 45, 46, 48, 53, 56, 59,60,61,62,63]

Putting own grief or ambivalence on hold to focus on patient’s wishes, reconciling to idea of hastened death as better option than disease trajectory or unassisted suicide [15, 18, 19]

‘I had to realize that this person was no [longer] capable mentally or physically, and I had to take over the role of [parent] just like you do, first it was like a 6 year old and then a 5 year old.’ (Clukey 2008, p312)

Spiritual beliefs

Taking comfort in a larger force to supply strength or determine patient’s fate, taking comfort in an afterlife [27, 32, 33, 36, 40, 56, 58, 59, 61]

Spiritual or ritual elements, during or after death, add to closure [16, 18, 19, 68]

Positive events

Events that eased suffering, allowed for closure, or provided humor [26, 32, 33, 36, 50, 55]

In U.S. and Canadian studies, deaths were described as joyful, sacred, or peaceful, with patients’ wishes achieved [16, 68, 70, 71].