Skip to main content

Table 10 Influencing Factors

From: Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review

Influencing factors End of Life Hastened Death
Ability (preparedness, mastery, competence, self-efficacy) Knowing what to expect, being prepared for patient’s death, feeling able to learn skills to meet new demands, taking pride in ability to care, having relevant previous experience [26, 27, 29, 30, 32,33,34,35,36,37,38, 40, 41, 43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59, 61, 62, 65, 66] Because caregivers had not facilitated hastened deaths before, few reported ability-related factors. Not knowing how to manage a difficult hastened death was stressful [16, 17].
I guess the only thing I wish is I think it would have been easier if we could have had more knowledge as far as how to do it; it would have been a whole ton smoother. And it ended up feeling fairly desperate. ...I don’t remember it as being anything negative, I just remember it as being exhausting.” (Starks et al p.117)
“[Home palliative care physician] sat me down at one point, I think the last visit before she died…. He told me what I might expect and… That was invaluable.” (Mohammed et al p1232)
Structure (social support, information, respite) Lack of support from friends and family, and lack of information about what to expect in caregiving were closely related to caregiver isolation and exhaustion. Caregivers acknowledged the importance of respite, but more often in retrospect after death [26, 28, 29, 32,33,34,35,36,37,38,39,40,41,42, 44, 46,47,48,49,50,51, 54,55,56,57,58,59,60,61,62, 64, 66]. “In retrospect. .. my sister should have been trained, or somebody, to actually watch me for two weeks. .. you need to watch that caregiver and make sure she’s getting sleep and actually has her wits about her.” (Mangan et al, p252) Experience varied by jurisdiction: Swiss caregivers and U.S. caregivers where aid in dying was illegal reported feeling isolated by potential social stigma. Where hastened death was legal, some caregivers found support from family and friends. Swiss caregivers appeared to have adequate information about hastened death, but U.S. caregivers did not always have information on how to handle difficult deaths. Respite was not mentioned in hastened death studies [15, 19, 20, 69].
“The impossibility to tell “look, he has died of assisted suicide…” it was tremendous, it was sad.” (Gamondi et al 2015, p. 150)
Satisfaction (rewards, meaningfulness, mutuality, choice and commitment) Enhancing: fulfilling sense of duty, showing love, meeting patient’s wishes, personal growth, being close with patient Enhancing: being able to help patient enact wishes, being present for aided death, helping avoid suffering, taking place in sacred or celebratory event, engaging in communal act of planning and conducting death [16, 20, 70]
Challenging: feeling inadequate when unable to meet all patient needs, needing to respect patient’s perspective [26, 27, 29, 32,33,34,35,36,37,38,39,40,41, 44,45,46,47,48,49,50,51, 53,54,55,56,57,58,59,60,61,62,63,64,65,66]
“When I got down there that morning this whole circle of her closest people had done a ritual around this killing drug, this beautiful ritual around it.. .. They were all in a circle with a candle lit and they were emptying the capsules together and they were being playful and just the most beautiful energy, loving and making jokes and everything.. .. They prepared it in a very sacred and light way.” (Buchbinder 2018, p8)
“I thought to myself, yeah, you’ve [wife] done things like that for me, it’s my turn to help you out and look after you and support you.” (Totman et al, p503)
Outlook (anxiety, depression, and psychological distress; positive emotion; optimism) Enhancing: satisfaction with performing well, feeling appreciated, closure Setting aside anticipatory grief to focus on patient, seeing patients achieve wish of peaceful death and release from suffering [17, 18, 70]
Challenging: Impending loss of patient, relentless burden of caregiving, gradual loss of closeness with patient, not wanting to harm patient’s optimism [26, 30, 31, 35,36,37, 41, 44, 46, 48, 49, 53, 54, 56, 58, 60,61,62,63,64,65]
Personal (cultural factors; caregiver burden and health; patient’s disease status, level of dependency, and duration of illness; caregiver age, gender, socioeconomic status) Exhaustion from caregiving, balancing caregiving and other life responsibilities, sense of duty to patient, patient’s acceptance or denial of condition [26, 27, 29,30,31,32,33,34,35,36,37,38,39,40, 46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62, 64, 66] Understanding patient’s current suffering, likely trajectory and the inevitability of death, shared expectation that hastened death would be more comfortable, lack of clarity about when hastened death would be appropriate [15, 70, 72]