End of life of patients treated with haemodialysis as narrated by their close relatives

Abstract

Aim The study aimed to describe end of life for patients treated with maintenance haemodialysis as narrated by their close relatives. Introduction Many patients undergoing haemodialysis are older, have several comorbidities and underestimated symptoms and are in their last year of life. To improve care, we need to know more about their end‐of‐life situation. Design Qualitative and descriptive. Methods Qualitative retrospective interviews were conducted with 14 close relatives of deceased haemodialysis patients (3–13 months after death). Data were analysed using qualitative content analysis. The study is ethically approved. Findings In the last months, a gradual deterioration in health with acute episodes necessitating hospital admissions was described. This involved diminishing living space and expressions of dejection, but also of joy. Three patterns emerged in the last weeks: uncertain anticipation of death as life fades away; awaiting death after haemodialysis withdrawal; and sudden but not unexpected death following intensive care. Findings show complexities of decisions on haemodialysis withdrawal. Conclusions Different end‐of‐life patterns all involved increasingly complex care needs and existential issues. Findings show a need for earlier care planning. The identification of organisational factors to facilitate continuity and whole person care to meet these patients' specific care needs with their complex symptom burdens and comorbidities is needed. Findings indicate the need for integration of a palliative care approach in the treatment of patients in haemodialysis care.

Work of being an adult patient with chronic kidney disease: a systematic review of qualitative studies

“… 141 247 Patients who decided to stop dialysis did not usually ask for their carers’ opinion; when physicians thought the patient was too ill to decide, carers were consulted and felt death could be liberating if the patient was in pain and with no response to treatment. 134 141 161 …”

“… 290–292 At the end of life, maintaining control was a struggle with respect to autonomy and dignity. 134 136 205 251 Patients based their dialysis withdrawal or non-acceptance decision on having lived a full life, on nature taking its course, on their fear of being a burden for their families, their bodies being invaded and dialysis accelerating death. 128 293 For some, the decision to withdraw from dialysis meant asserting their self-determination.…”

Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease: A National Registry Study About the Last Week of Life

“…19 Importantly, severe pain is found to be one reason why patients consider hemodialysis withdrawal. 20 Bereaved family members 21 have also described severe pain as an explanation for patients' decisions to withdraw dialysis. It should also be noted that besides pain, nausea and shortness of breath were also more prevalent in the study by Murtagh et al 17 One explanation for this could be that symptoms were self-reported by patients in their study.…”

Processes toward the end of life and dialysis withdrawal Physicians’ and nurses’ perspectives

“…Patients can also be ambivalent to high-stakes decisions regarding life and death, intermittently accommodating their perspectives and sayings to those of the family or to another decision course during treatment. 9 Hence, this points to the importance of exploring what the patient really wants, that is, acknowledging self-determination which also highlights that patients and family may need more time for decisions in agreement which must be respected. Still, decisions regarding dialysis withdrawal must sometimes go against what the family wants when this is not in line with the patient’s wishes or, when they cannot partake and express them, their best interests.…”

“…8 Family members also struggle to reach a sense of balance and well-being as they face growing demands and moral dilemmas during the ill person’s deterioration. 9,10…”