Insight into Patients’ & Caregivers’ Perspectives on Conservative Management in End of Life Care

Dr. Katherine Cheung

Dr. Katharine Cheung

Patients with end-stage kidney disease often experience clinical and psychological set backs that negatively impact quality of life and survival. Growing data suggest a role for conservative (non-dialytic) management for patients with advanced comorbidities. Conservative care is a refocusing of management on quality of life over quantity of life. Tong and colleagues conducted a systematic review of qualitative studies to examine patient and caregiver perspectives on conservative management and end of life care. Study author Katharine L. Cheung (KLC) discussed her findings with Dr. Jane Schell (eAJKD), eAJKD Contributor.

eAJKD: You found five themes describing patient and caregiver perspectives on end-of-life issues. Can you briefly discuss these findings and how they relate to one another?

KLC:The five themes that arose from our synthesis are:

  1. Invasive suffering
  2. Personal vulnerability
  3. Relationship responsibility
  4. Negotiating existential tensions
  5. Preparedness.

Suffering and vulnerability speak to the multidimensional frailty experienced by our patients. Preparedness is juxtaposed with the ambivalence that is felt in the relational responsibility and existential tensions.

eAJKD: What prompted you to explore patients’ and caregivers’ perspectives on conservative treatment and end-of-life care in advanced chronic kidney disease?

KLC: Older adults are the fastest growing group of dialysis patients, but the mortality rate is as high as 24% in the first six months. The literature shows that patients do not feel informed regarding the decision to initiate dialysis, and more attention has recently focused on shared decision-making. Shared decision-making is a vital component of advanced care planning (ACP) and requires an understanding of the patients’ and caregivers’ values and goals. We performed this review to highlight the work that has already been done and to identify areas for further study.

eAJKD: Multiple countries are represented in the data. From your analysis, did experience or perspectives differ between countries?

KLC: We did not find any striking differences in perspectives amongst the countries studied; however, all but one of the studies in this review are from Western, developed countries. There may be important differences between developed and developing countries.

eAJKD: Advance care planning is an ongoing process that outlines patient preferences for care, especially at the end of life. For patients with CKD, ACP has been well described, but less guidance exists for how and when this should occur in a way that attends to patient and caregivers needs. Are there insights from your work that may enhance ACP discussions with patients and their families?

KLC: Our review demonstrates that patients and caregivers wish to be more prepared with regard to their end-of-life decisions. This can come in the form of delivering accessible information, engaging with patients and caregivers about their fears and concerns including spiritual and existential tensions, and improving communication skills for providers to facilitate these discussions.

eAJKD: The results describe a high degree of functional impairment and psychosocial burden in elderly patients with CKD. Based on these findings, what kinds of services are available to address these limitations and burdens within the nephrology clinic?

KLC: A multidisciplinary clinic may be helpful to address these issues and to orchestrate care. An assessment of the functional impairment and the emotional and psychological burdens that our patients face is primary. Providers may find it useful to adopt geriatric assessments or to incorporate palliative care providers into their clinic practice. These tools and skills have the potential to address frailty and suffering, and assess caregiver burden and existential tensions.

eAJKD: This study is unique in that you also studied caregiver perspectives. Can you discuss the role of the caregiver, and unique challenges they expressed in terms of end of life and ACP?

KLC: The role of caregivers has generated interest outside of nephrology for some time, but has particular relevance to our frail older patients with advanced CKD. Many of the issues are similar to other chronic diseases, such as poly-pharmacy, frequent medical appointments, and concomitant cognitive impairment. There are also unique issues in CKD like the technical and procedural aspects of renal replacement therapy which can be alienating to caregivers and patients. Caregivers may find it difficult to observe the vulnerability of their loved ones, and may have competing interests that are especially challenging to discuss.

eAJKD: How will the results from this study inform future work?

KLC: These themes highlight the need for research in renal palliative care and the multiple aspects of frailty in patients with CKD. Through understanding the context in which our patients live and the existential tensions that caregivers and patients experience, we may be more prepared to engage in shared decision-making. Ultimately, this will help patients arrive at a decision that is aligned with their goals. We need further studies to determine how to deliver information that can be easily understood and acted upon.

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