How palliative care patients’ feelings of being a burden to others can motivate a wish to die. Moral challenges in clinics and families

Abstract

The article explores the underlying reasons for patients’ self‐perception of being a burden ( SPB ) in family settings, including its impact on relationships when wishes to die ( WTD ) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB , (b) correlations between SPB and WTD , and (c) SPB as a relational phenomenon. We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB . These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted.

Perceived Burdensomeness and the Wish for Hastened Death in Persons With Severe and Persistent Mental Illness

“…In addition, it seems possible that patients with SPMI might benefit from a palliative care approach ( 4 ). In cases of perceived burdensomeness, this issue must be addressed in the therapeutic process to alleviate that element of suffering ( 28 , 32 , 34 , 35 , 37 ), not least because patients have indicated that it is difficult to talk about this with their family ( 34 ).…”

“…There is also a risk that relatives may unconsciously or unintentionally pressure the patient to seek MAID ( 17 ) and that their opinion may play an important role in any such decision, regardless of whether the patient has a mental illness ( 9 , 15 , 38 ). For example, a patient might reject MAID because their family is against this approach ( 17 , 34 ). In one study of family members of patients who lacked decision-making capacity (DMC), Winter and Parks ( 44 ) found that when there was any disagreement, family members tended to favor life-prolonging rather than palliative care approaches and that the decision was influenced more by family members than by the patient's own preference.…”

“…In one study of family members of patients who lacked decision-making capacity (DMC), Winter and Parks ( 44 ) found that when there was any disagreement, family members tended to favor life-prolonging rather than palliative care approaches and that the decision was influenced more by family members than by the patient's own preference. In some cases, patients might avoid speaking with family members about the fear of being a burden and might overestimate that burden by linking that feeling to the issue of MAID ( 34 ). This might lead some patients to refuse MAID because they perceive it as a burden on their families, prompting troubling inner conflict and greater suffering ( 34 ).…”

“…In some cases, patients might avoid speaking with family members about the fear of being a burden and might overestimate that burden by linking that feeling to the issue of MAID ( 34 ). This might lead some patients to refuse MAID because they perceive it as a burden on their families, prompting troubling inner conflict and greater suffering ( 34 ). If a patient also perceives themselves as a burden to society as a whole, this may prompt a wish for hastened death ( 34 ).…”

“…This might lead some patients to refuse MAID because they perceive it as a burden on their families, prompting troubling inner conflict and greater suffering ( 34 ). If a patient also perceives themselves as a burden to society as a whole, this may prompt a wish for hastened death ( 34 ). For example, some authors have suggested that patients may be inclined to request MAID because they feel they are a financial burden to society, and that legalization of MAID may seem to confirm society's desire to ease that burden ( 32 ).…”