Abstract
Background and Aims
Chronic kidney disease (CKD) is common in the UK, especially amongst frail older people with multiple health problems. The survival benefit of kidney replacement therapy (KRT) for such patients is uncertain and the burdens significant, meaning patients make difficult decisions between planning for dialysis or opting for conservative kidney management (CKM).
People close to individuals with advanced CKD are known to play an important role in treatment decision-making, but data exploring their perspectives are limited. This qualitative study aimed to explore older, comorbid patients’ and family members’ understanding of and views regarding treatment decision-making.
Method
In-depth interviews were conducted in person in 2018-2019 among older patients with advanced CKD (>80 years old or >65 with evidence of frailty or comorbidity) and least one family member (partner/spouse/child/grandchild) per patient. Interviews used open-ended questioning, supported by a topic guide based on patient input and the literature. Transcripts were analysed using inductive thematic analysis and constant comparison to identify concepts and meanings from participants’ views and reported experiences. Codes and interviews were discussed and compared among study investigators, with consideration of wider meaning, alongside reorganisation and recoding, and thematic development.
Results
Ten patients and 12 family members (6 spouses/partners, 5 adult children and 1 adult grandchild) were interviewed. Four themes were identified: (1) “whose decision is it anyway?”; (2) “facing uncertainty”; (3) “on death and dying” and (4) “caring and being cared for”.
“Whose decision is it anyway?” speaks to perceived nuances around the ownership of decisions about kidney therapy. While some interviewees described the decision belonging solely to the patient, others described varying degrees of collaboration with and persuasion from family members (particularly partners/spouses). Clinician influence was also described by patients and family members.
“Facing uncertainty” captures patients’ and their family members’ view that decisions are contingent upon largely uncertain future circumstances.
“On death and dying” describes the pivotal role in treatment decision-making of patients’ and family members’ sense of life completion and feelings about death and dying. KRT was perceived as life-prolonging, while an acceptance of death and dying was seen to be important for consideration of CKM.
“Caring and being cared for” elucidates the importance of caring roles between patients and their family members for decisions about the future, including the specific effect of loving relationships on the value patients and their family members assign to living.
Conclusion
We found both patients and family members influence treatment decisions, which they tend to view as flexible in the face of uncertainty. The desire to prolong important family relationships was a motivator for favouring KRT, in light of an understanding of KRT as life-prolonging.
Kidney services should recognise the significance of family relationships to older patients’ treatment decision-making. Clinicians must ensure that patients and family members understand the implications of treatment choice for quality-of-life, prognosis, and end-of-life care. This is likely to include understanding which family members or close ones are important, involving these people in decision-making and recognising that changes in family situations may necessitate re-visiting previous decisions.
Chronic kidney disease (CKD) is common in the UK, especially amongst frail older people with multiple health problems. The survival benefit of kidney replacement therapy (KRT) for such patients is uncertain and the burdens significant, meaning patients make difficult decisions between planning for dialysis or opting for conservative kidney management (CKM).
People close to individuals with advanced CKD are known to play an important role in treatment decision-making, but data exploring their perspectives are limited. This qualitative study aimed to explore older, comorbid patients’ and family members’ understanding of and views regarding treatment decision-making.
Method
In-depth interviews were conducted in person in 2018-2019 among older patients with advanced CKD (>80 years old or >65 with evidence of frailty or comorbidity) and least one family member (partner/spouse/child/grandchild) per patient. Interviews used open-ended questioning, supported by a topic guide based on patient input and the literature. Transcripts were analysed using inductive thematic analysis and constant comparison to identify concepts and meanings from participants’ views and reported experiences. Codes and interviews were discussed and compared among study investigators, with consideration of wider meaning, alongside reorganisation and recoding, and thematic development.
Results
Ten patients and 12 family members (6 spouses/partners, 5 adult children and 1 adult grandchild) were interviewed. Four themes were identified: (1) “whose decision is it anyway?”; (2) “facing uncertainty”; (3) “on death and dying” and (4) “caring and being cared for”.
“Whose decision is it anyway?” speaks to perceived nuances around the ownership of decisions about kidney therapy. While some interviewees described the decision belonging solely to the patient, others described varying degrees of collaboration with and persuasion from family members (particularly partners/spouses). Clinician influence was also described by patients and family members.
“Facing uncertainty” captures patients’ and their family members’ view that decisions are contingent upon largely uncertain future circumstances.
“On death and dying” describes the pivotal role in treatment decision-making of patients’ and family members’ sense of life completion and feelings about death and dying. KRT was perceived as life-prolonging, while an acceptance of death and dying was seen to be important for consideration of CKM.
“Caring and being cared for” elucidates the importance of caring roles between patients and their family members for decisions about the future, including the specific effect of loving relationships on the value patients and their family members assign to living.
Conclusion
We found both patients and family members influence treatment decisions, which they tend to view as flexible in the face of uncertainty. The desire to prolong important family relationships was a motivator for favouring KRT, in light of an understanding of KRT as life-prolonging.
Kidney services should recognise the significance of family relationships to older patients’ treatment decision-making. Clinicians must ensure that patients and family members understand the implications of treatment choice for quality-of-life, prognosis, and end-of-life care. This is likely to include understanding which family members or close ones are important, involving these people in decision-making and recognising that changes in family situations may necessitate re-visiting previous decisions.
| Original language | English |
|---|---|
| Journal | Nephrology Dialysis Transplantation |
| Volume | 39 |
| Issue number | Issue Supplement 1 |
| DOIs | |
| Publication status | Published - 23 May 2024 |