Contrasting approaches to end of life and palliative care in end stage kidney disease

Abstract Background: Palliative care is increasingly becoming an accepted treatment choice for many individuals diagnosed with end-stage kidney disease (ESKD). Yet, its utilisation is non-existent in many lower- and middle-income countries (LMICs). This study explored the perceptions of individuals with ESKD and their informal caregivers on palliative care as a treatment option for the disease in Ghana.Methods: This was a phenomenological study, with an in-depth analysis of data collected from nine individuals with ESKD and six informal caregivers through individual, face-to-face semi-structured interviews. The study was conducted in two renal centres within the Kumasi metropolis, Ghana among individuals with ESKD seeking care from both renal centres and their informal caregivers.Results: Three main themes were derived from this study – motivation for initiating haemodialysis, facing realities of haemodialysis, and considering palliative care. Participants felt that haemodialysis (HD) was not meeting their health expectations and demonstrated a general willingness to utilise palliative care if it would reduce suffering. Conclusions: This study has shown that individuals with ESKD or their informal caregivers would consider palliative care services, if available. It paves the way for discussions about Palliative care for ESKD to begin across renal centres within Ghana and other similar settings. Exploring perspectives of clinicians in such settings could inform strategies on how to implement Palliative care for ESKD management in such settings.

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Renal palliative and supportive care in South Africa – a consensus statement

African Journal of Nephrology ◽

10.21804/23-1-4009 ◽

2020 ◽

Vol 23 (1) ◽

Author(s):

Nicola Wearne ◽

Rene Krause ◽

Bianca Davidson ◽

Frank Brennan

Keyword(s):

South Africa ◽

Palliative Care ◽

Kidney Disease ◽

Supportive Care ◽

Healthcare Professionals ◽

Consensus Statement ◽

Communicable Diseases ◽

End Stage Kidney Disease ◽

High Burden ◽

End Stage

In South Africa, there is a high burden of end-stage kidney disease (ESKD). This is due to the burgeoning epidemics of communicable diseases like HIV/AIDS and non-communicable diseases, particularly hypertension and diabetes mellitus. One of the most difficult situations encountered by healthcare professionals dealing with patients with ESKD in South Africa is the management of a conservative or palliative care pathway for the many patients who have no other option. Patients with advanced chronic kidney disease (CKD) have a high burden of physical and psychosocial symptoms, poor outcomes, and high costs of care. Many patients are managed in primary healthcare settings and either do not have access to palliative care or are not referred appropriately. Renal supportive and palliative care involves a multidisciplinary approach to managing patients with ESKD, to ensure that symptoms are managed optimally and to provide support during advanced disease. It aims to improve quality of life for patients and their families and must be provided alongside curative medical care. This support should include those unable to gain access to life-saving dialysis and it should also provide care for patients where dialysis is not the best option. The aim of this consensus statement is to assist healthcare providers to improve the management of symptoms and biosocial factors of patients with end-stage kidney disease in a South African context. The document was compiled through consensus building among healthcare professionals across South Africa. The professionals that are represented included nephrologists, palliative care physicians, social workers, nurses, paediatricians and hospital managers. We wish to acknowledge the contribution of Dr Frank Brennan, a leading expert in renal palliative and supportive care, who assisted greatly in the compilation of this document.

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Perceptions of patients with end-stage kidney disease (ESKD) and their informal caregivers on palliative care as a treatment option: a qualitative study

10.21203/rs.3.rs-26605/v1 ◽

2020 ◽

Author(s):

Catherine Sarfo-Walters ◽

Edward Appiah Boateng

Keyword(s):

Palliative Care ◽

Kidney Disease ◽

Treatment Option ◽

Phenomenological Study ◽

Informal Caregivers ◽

Structured Interviews ◽

End Stage Kidney Disease ◽

Middle Income ◽

Depth Analysis ◽

End Stage

Abstract Background Palliative care is increasingly becoming an accepted treatment choice for many individuals diagnosed with end-stage kidney disease (ESKD). Yet, its utilisation is non-existent in many lower- and middle-income countries (LMICs). This study explored the perceptions of individuals with ESKD and their informal caregivers on palliative care as a treatment option for the disease in Ghana. Methods This was a phenomenological study, with an in-depth analysis of data collected from nine individuals with ESKD and six informal caregivers through individual, face-to-face semi-structured interviews. The study was conducted in two renal centres within the Kumasi metropolis, Ghana among individuals with ESKD seeking care from both renal centres and their informal caregivers. Results Three main themes were derived from this study – motivation for initiating haemodialysis, facing realities of haemodialysis, and considering palliative care. Participants felt that haemodialysis (HD) was not meeting their health expectations and demonstrated a general willingness to utilise palliative care if it would reduce suffering. Conclusions This study has shown that individuals with ESKD or their informal caregivers would consider palliative care services, if available. It paves the way for discussions about Palliative care for ESKD to begin across renal centres within Ghana and other similar settings. Exploring perspectives of clinicians in such settings could inform strategies on how to implement Palliative care for ESKD management in such settings.

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

Nursing Ethics ◽

10.1177/0969733019848050 ◽

2019 ◽

Vol 27 (2) ◽

pp. 419-432

Author(s):

Lena Axelsson ◽

Eva Benzein ◽

Jenny Lindberg ◽

Carina Persson

Keyword(s):

Decision Making ◽

Kidney Disease ◽

End Of Life ◽

Healthcare Professionals ◽

Moral Distress ◽

Qualitative Content Analysis ◽

Family Members ◽

Research Approach ◽

End Stage Kidney Disease ◽

End Stage

Background: Nurses and physicians in nephrology settings provide care for patients with end-stage kidney disease receiving hemodialysis treatment along a complex illness trajectory. Aim: The aim was to explore physicians’ and nurses’ perspectives on the trajectories toward the end of life involving decisions regarding hemodialysis withdrawal for patients with end-stage kidney disease. Research design and participants: A qualitative research approach was used. Four mixed focus group interviews were conducted with renal physicians (5) and nurses (17) in Sweden. Qualitative content analysis was used to analyse data. Ethical considerations: Ethical approval was obtained (Dnr 2014/304-31). Findings and discussion: Findings illuminated multi-faceted, intertwined processes encompassing healthcare professionals, patients, and family members. The analysis resulted in four themes: Complexities of initiating end-of-life conversations, Genuine attentiveness to the patient’s decision-making process, The challenge awaiting the family members’ processes, and Negotiating different professional responsibilities. Findings showed complexities and challenges when striving to provide good, ethical care which are related to beneficence, nonmaleficence, and self-determination, and which can give rise to moral distress. Conclusion: There are ethical challenges and strains in the dialysis context that healthcare professionals may not always be prepared for. Supporting healthcare professionals in not allowing complexities to hinder the patient’s possibilities for shared decision-making seems important. An open and continual communication, including family meetings, from dialysis initiation could serve to make conversations involving decisions about hemodialysis withdrawal a more natural routine, as well as build up a relationship of trust necessary for the advance care planning about the end of life. Healthcare professionals should also receive support in ethical reasoning to meet these challenges and handle potential moral distress in the dialysis context.

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