“Thematic Synthesis of Qualitative Studies on Patient and Caregiver Perspectives on End-of-Life Care in Serious Kidney Illness”
Published in the June, 2014 edition of the American Journal of Kidney Diseases, a report titled, “Thematic Synthesis of Qualitative Studies on Patient and Caregiver Perspectives on End-of-Life Care in CKD” identified five consistencies among serious kidney illness patients and their caregivers. Across 26 studies conducted with more than 711 participants, this report found invasive suffering, personal vulnerability, relational responsibility, negotiating existential tensions, and preparedness were common issues among both groups. Detailed invasive suffering could include any or all of the follow: body deterioration, loss of freedom, fatigue and pain, and even financial strain. Personal vulnerability could apply to patients as well as caregivers including their misunderstanding treatment options and making incorrect judgments during the course of care. Associate caregiver responsibility deals closest to psychological trauma of prolonged invasive treatments such as feelings of being a burden, demonstrating loyalty, or the need to shield others from bad news. Other commonalities such as negotiating existential tensions and preparedness involve emotional matters including end-of-life acceptance and those more common, i.e. making clear medical decisions. “Some patients,” the study concluded, “experience physical and psychosocial frailty and feel ambivalent about prolonging life. Some caregivers believe in providing relief from suffering, but are uncertain about making decisions regarding dialysis therapy initiation and discontinuation.” With such consistency of uncertainty and trauma abounding during the dialysis process; it’s easy to understand why so many late-stage patients choose to withdraw from treatment.
It’s important to note that one should never terminate treatment without consulting their physician; particularly without considering all treatment options— even while undergoing dialysis. In conjunction with late-stage kidney disease treatments such as dialysis, patients may incorporate other forms of care, including probiotics. The American Journal of Kidney Diseases suggests that management of conditions such as serious kidney illness “should encompass palliative care strategies promoting emotional resilience, sense of well-being, and self-value.” In addition, caregivers and patients must be empowered to express concerns about the quality of care received. Communication is key in obtaining treatment one deserves; coupled with a combination of pain and mental well-being management both critical to providing hope for kidney diseases sufferers.
American Journal of Kidney Diseases “Thematic Synthesis of Qualitative Studies on Patient and Caregiver Perspectives on End-of-Life Care in Serious Kidney Illness.” Vol. 63, Issue 3. June, 2014. http://www.ajkd.org/article/S0272-6386(13)01536-9/abstract