Palliative care for end-stage renal disease (ESRD) is developing in Hong Kong. This is the first local study to explore the symptom burden and quality of life (QOL) of ESRD patients on chronic dialysis and palliative care. This was a prospective cross-sectional study conducted on ESRD patients in a hospital in Hong Kong from January 2006 to April 2007. Data collected included demographics, socioeconomic status, modified Charlson Comorbidity Index (CCI), prevalence and intensity of 23 ESRD-related symptoms as rated by numerical rating scale (0-10), Brief Pain Inventory and QOL by MOS SF-36. A total of 179 ESRD patients completed the study; 45 patients (25.1%) were in the palliative care group and 134 patients (74.9%) in the dialysis group. The palliative care group were older (73.1 +/- 7.1 vs 58.2 +/- 11.4 years, P < 0.001), had marginally higher modified CCI (8.5 +/- 1.9 vs 6.1 +/- 2.4, P = 0.05), had more diabetics (62.2 vs 35.8%, P < 0.001) and were of poorer socioeconomic status than the dialysis group. The mean number of symptoms was 8.2 +/- 3.9 and 9.3 +/- 4.7 in the palliative care and the dialysis group, respectively (P = NS). Fatigue, cold aversion, pruritus, lower torso weakness and difficulty sleeping were the five most prevalent symptoms in both groups, and were also among the most intense symptoms. QOL was significantly impaired in both groups. Scores of all QOL domains correlated negatively with the number of symptoms (P < 0.001). Our ESRD patients under palliative care and dialysis had overlapping symptom prevalence and intensity, significant symptom burden and impaired QOL.

A retrospective study was conducted to evaluate the symptoms prevalence and interventions initiated in the last 2 weeks of life, health care service utilization, and causes of death of patients with end-stage renal disease (ESRD under a renal palliative care (RPC) program. A total of 335 RPC patients were included, of which 226 patients died during the study period. The 5 most prevalent symptoms were dyspnea (63.7%), fatigue (51.8%), edema (48.2%), pain (44.2%), and anorexia (38.1%); and the 5 most prevalent interventions initiated were oxygen (69.5%), parenteral infusion (67.3%), antibiotics (53.5%), bladder catheterization (44.7%), and analgesic (39.8%) in the last 2 weeks of life. Each patient received 3.5 ± 4.4 outpatient clinic visit, 3.4 ± 10.3 home care visits, and 3.1 ± 2.7 hospital admissions. Besides ESRD (51.8%), the most common causes of death were cardiovascular events (18.6%) and infection (17.2%).

No abstract

The research on patients' preferred place of care and death has received increasing attention in recent decades. In palliative care, one of the main goals is to facilitate patients to stay in their preferred place of care, and to die in the place of their choice. Although ‘home' is often quoted as the most preferred place of care and death among the terminally-ill in other places, local studies suggested otherwise. In Hong Kong, death is highly institutionalized with the vast majority of deaths occurring in public hospitals. Local culture, health care system and its provision and accessibility, presence of public health care policy on palliative care and care for the terminally-ill are among the factors affecting patients' preferred and actual place of care and death. This chapter is going to provide an overview of the recent studies and to discuss the topic from the Asian perspectives, and to highlight on the debates on the related policies.