Enhanced Psychosocial Support for Caregiver Burden for Patients With Chronic Kidney Failure Choosing Not to Be Treated by Dialysis or Transplantation: A Pilot Randomized Controlled Trial.

BACKGROUND: Family caregivers of patients with chronic kidney failure have increased burden, as reflected by their high frequency of physical and mental disturbances. The impact of enhanced psychosocial support to caregivers of patients with chronic kidney failure remains unclear. STUDY DESIGN: Open-label randomized controlled trial. SETTING & PARTICIPANTS: All new patients referred to the renal palliative clinic were screened. Caregivers of patients who met the following criteria were recruited: (1) chronic kidney failure as defined by creatinine clearance < 15 mL/min, (2) opted for conservative management by nephrology team or patient, (3) never treated with dialysis or transplantation, and (4) able to provide informed consent. INTERVENTIONS: Random assignment to treatment with enhanced psychosocial support or standard renal care (control). Enhanced psychosocial support included counseling and psychosocial interventions by an on-site palliative care nurse and designated social worker. Each caregiver was followed up at 2- to 4-week intervals for up to 6 months. OUTCOMES: Zarit Burden Inventory (ZBI) and Hospital Anxiety and Depression Scale (HADS) in caregivers and McGill Quality of Life scores in patients of both groups were compared. RESULTS: 29 pairs of family caregivers/patients with chronic kidney failure were randomly assigned (intervention, n=14; control, n=15). Mean ages of patients and caregivers were 81.6 ± 5.1 and 59.8 ± 14.2 (SD) years, respectively. The intervention group showed significantly lower ZBI scores than the control group at 1 and 3 months (22.0 ± 5.3 vs 31.6 ± 9.5 and 21.3 ± 6.6 vs 33.4 ± 7.2; P=0.006 and P=0.009, respectively). HADS anxiety scores of caregivers who received the intervention were significantly lower than those of controls at 1 and 3 months (7.1 ± 3.2 vs 10.1 ± 2.2 and 6.5 ± 4.5 vs 11.0 ± 3.1; P=0.01 and P=0.03, respectively). Insignificant reductions in ZBI and HADS scores were found at 6 months. 19 patients died (intervention, n=10; control, n=9) during the study period. LIMITATIONS: The study is limited by a relatively small sample size and short duration. CONCLUSIONS: Enhanced psychosocial support program in patients with chronic kidney failure and caregivers resulted in an early significant reduction in caregiver burden and anxiety.

End-of-life characteristics and palliative care provision for elderly patients suffering from acute myeloid leukemia.

PURPOSE: End-of-life care characteristics and palliative care (PC) utilization of elderly acute myeloid leukemia (AML) patients have rarely been reported. The aim of this study was to evaluate the cause of death, place of death and PC utilization of older adults (age 60 years or above) suffering from AML. METHODS: Patients were recruited retrospectively from two hematology units in Hong Kong, which consisted of one university department with Bone Marrow Transplant service, and one regional hospital with hematology specialty service. Collaboration with PC unit was established. Elderly AML patients referred to PC service were included. Medical records of all identified patients would be reviewed retrospectively by two PC physicians. RESULTS: From October 2011 to April 2013, 156 hematological cancer patients were referred for PC; 43 elderly AML patients were included into data analysis. The median time from AML diagnosis to death was 9.1 months. Up to 46.5% patients received supportive care alone since diagnosis. More than half of elderly AML patients died in acute ward and hematology units (53.5 %), while 30.2 % died in PC settings. Overall, 51.2% of patients spent the whole period of their final month of life in-hospital. Infection-related diagnoses contributed to 51.2% of deaths. Median time from AML diagnosis to first PC consultation was 1.0 month. PC service includes psychosocial support (100%), hospice in-patient care (30.2%), homecare (60.5%), PC outpatient clinic (14.0%) and bereavement care (93.0%). CONCLUSIONS: Elderly AML patients carry dismal prognosis with their final phase of disease mostly hospitalized in acute care settings. Infections and bleeding could complicate course of illness and lead to rapid deterioration. PC collaboration remains important in psychosocial support and coverage of dying AML patients in non-hospice settings.

Quality of life for Hong Kong Chinese patients with advanced gynecological cancers in the palliative phase of care: a cross-sectional study.

This study investigated the quality of life (QOL) of Hong Kong Chinese patients with advanced gynecological cancers (AGC). A cross-sectional study was conducted with 53 consecutive patients with AGC who were admitted to a university-based palliative care unit. The assessment tools utilized were: the McGill quality of life questionnaire for Hong Kong Chinese (MQOL-HK); the hospital anxiety and depression scale (HADS); the Palliative Performance Scale (PPS); and the psychosocial adjustment to illness scale (PAIS), sexual relationships subscale. The mean total score of the MQOL-HK was 4.63 +/- 1.94, within which the physical domain scored the worst (mean=3.99, SD=2.15, range: 0-7). Depression symptoms were common (62 percent). The median PPS was 40 percent. Younger age, higher HADS depression scores, and higher HADS anxiety scores were significantly correlated with poorer QOL. Furthermore, younger age and depression were significant predictors for a worse MQOL-HK score. In conclusion, Chinese patients with AGC have a relatively poor QOL, especially in the physical domain and in terms of depression symptoms. Age and depression symptoms are the most important factors affecting QOL. Proper identification of physical symptoms and depression symptoms, along with appropriate treatments, are important for improving QOL for patients.

Supportive care and symptom management in patients with advanced hematological malignancies: a literature review.

BACKGROUND AND OBJECTIVE: Recent advances have led to cure or long-term disease control for patients with hematological malignancy (HM). Unfortunately, some of them still have poor prognoses and are often associated with significant symptom burden and poor quality of life for patients and families. These patients usually require supportive care including red blood cell and platelet transfusion, due to disease itself and the oncological treatment, apart from their symptom management. However, there is currently lack of the literatures review in these aspects. The objective of this review is to summarize practical supportive care recommendations for physicians or nurses practicing in palliative care (PC)/hematology-oncology unit, starting with core approaches in use of blood products for anemia and thrombocytopenia, management of tumor lysis syndrome, PC and oncology nursing care. METHODS: Evidence for this review was obtained from a search of the Cochrane database, PubMed, guidelines of European Society of Medical Oncology, British society of Hematology, American Society of Clinical Oncology, National Comprehensive Cancer Network and peer-reviewed journal articles. KEY CONTENT AND FINDINGS: For asymptomatic cancer patients who are anaemic, a threshold of haemoglobin level of 7 g/dL is considered to be safe and generally favored for blood transfusion. 'Single-unit' red cell transfusion is safer and at least as effective as 'double-unit' transfusion. Prophylactic platelet transfusion should be given to stable patients without bleeding and with platelet count less than 10×109/L. In febrile patients, the threshold is lifted to 20×109/L. There are also recommendations for the use of blood products during COVID-19 pandemic. In general, HM patients were more prone to painful infections when compared with solid cancer patients. Thus, antibiotics to treat underlying infections should be applied whenever possible and as required to control pain. CONCLUSIONS: This narrative review showed the recent literatures in the supportive care and symptom management of advanced HM patients. However, it is limited by some of the 'evidence-based' recommendations for interventions (including symptom management) based on early phase of HM populations rather than those receiving end-of-life care.

Impact of structured advance care planning program on patients' wish items and healthcare utilization.

BACKGROUND: Structured advance care planning (ACP) program is an important service in the end-of-life care for patients with advanced medical illness. We pioneered a structured and coordinated ACP program for patients with advanced malignancies and end-stage organ failure in Hong Kong. This study investigated the impact of a structured ACP program on the concordance rate for patients' final wishes, patient/family satisfaction, and the number of acute admissions (AA) and length of stay (LOS) in hospital. METHODS: Patients with advanced malignancy or end-stage organ failure who were able to complete ACP forms during the current admission to medical units were recruited. Patients who could not complete ACP forms or <18 years of age were excluded. The ACP program comprised the following components: (I) baseline education (workshop/role play) in ACP sessions for linked nurses of different medical units; (II) structured ACP discussions with recruited patients and their proxies during admission, after any change in clinical status, and also at monthly intervals; (III) formal structured review of patients' goals at regular team meetings; (IV) "flagging" of advance directive (AD) in hospital computer system and (V) feedback to linked nurse on the congruence of care. Mentally competent patients who did not receive ACP and matched for disease and demographics were selected as controls in a 1:2.5 ratio. RESULTS: Two hundred forty-three patients were included for analysis between August 2016 and July 2017, of which 69 patients joined the ACP program and 174 of them did not. Two hundred and one patients (83%) had advanced cancer. All had done do-not-attempt-cardiopulmonary-resuscitation (DNACPR) order in the ACP group. The concordance rates for patients' wishes on quality of life, end-of-life and funeral arrangements were 95%, 100% and 100% respectively. Over 70% of patients and their families (N=10) showed satisfaction with the program. The ACP group also had lower mean AA and shorter LOS (0.78±0.23 vs. 1.2±0.8 episode/patient, 4.6±1.7 vs. 7.5±2.5 days, P=0.037 and P=0.023 respectively) in the last 3 months of life compared with the non-ACP group. CONCLUSIONS: This ACP program achieved high concordance rate for patients' wish items and reduced healthcare utilization.

A Pilot Comprehensive Psychoeducation Program for Fluid Management in Renal Palliative Care Patients: Impact on Health Care Utilization.

Background: Fluid management is a clinical challenge in patients with end-stage renal disease (ESRD), especially among those who opted for conservative treatment. We initiated a comprehensive program of psychosocial interventions. Objectives: To study the impact of this psychoeducational (Appropriate amount of intake, Self-efficacy, and Adherence [ASA]) program on symptom burden and acute admission rates related to fluid overload (FO) in this group of elderly ESRD patients attending renal palliative care outpatient clinic under our division. Methods: All elderly (age >60 years) patients who were followed in our renal palliative clinic had one or more acute admissions related to FO during the first three months were identified and invited to participate in this program. The palliative care nurse assessed each pair of patient/caregiver before doctor consultation, documented the symptom burden by the Edmonton Symptom Assessment Scale, provided symptom advice with use of pamphlets, monitored fluid and drug compliance, and provided psychosocial-spiritual support. The patient symptom score, body weight (BW), and three month acute admission episodes were compared before and after psychoeducation interventions by paired t test. Results: Data from 138 patients were analyzed. Of them, edema, shortness of breath, and insomnia occurred in 131 (95%), 67 (49 %), and 44 (32%) patients, respectively. A total of 125 patients (90.6%) had poor fluid/diet compliance, whereas 59 patients (42.7%) had poor drug compliance. The BW decreased significantly from 57.1 (12.8) kg at baseline to 52.5 (13.6) kg after three months of the ASA program. The acute admission rate related to FO dropped significantly from 7.6 episodes/patient/year to 6.4 episodes/patient/year. Conclusion: Our data demonstrated that the ASA program could improve patient symptoms and reduce acute hospital admissions, and thus improve the overall patient wellbeing and reduce health care utilization. Further studies are required to delineate the efficacy of different components in this ASA program and how to enhance its delivery.

Factors associated with lower quality of life among patients receiving palliative care.

AIM: This paper is a report of a study conducted to (1) assess the quality of life (QoL) and physical functioning status of patients diagnosed with advanced cancer and receiving palliative care; (2) determine if there was a statistically significant relationship between their physical functioning and QoL and (3) identify the demographic and disease-related variables related to their QoL. BACKGROUND: Achieving the best possible QoL is a major goal in palliative care. However, research findings about the relationship between QoL and demographic variables have been inconsistent. METHOD: Three hundred patients with advanced cancer were recruited from four district hospitals in Hong Kong between February 2005 and July 2006. Their QoL and physical functioning status were assessed by face-to-face interview, using the McGill Quality of Life Questionnaire (Hong Kong version) and the Palliative Performance Scale respectively. RESULTS: Participants reported reduced ambulation, inability to perform hobbies or housework, and the need for occasional assistance in self-care (mean: 64.6 out of 100, sd: 19.3, range: 20-100). QoL was fair (mean: 6.2 out of 10, sd: 1.5, range: 0.9-10). There was a weak positive association between physical functioning and QoL scores. Multiple regression analysis showed that patients who were older, female, had ever been married, or had higher physical functioning tended to have better QoL. CONCLUSION: More could be done in symptom and psychosocial management to improve patients' QoL, in particular for those who are younger, male or single, or who have lower physical functioning.

Palliative Care Consultation in Advanced Chronic Kidney Disease with Pain.

BACKGROUND: There is little data on pain management in patients with advanced chronic kidney disease (CKD) who have opted for palliative care. OBJECTIVE: We investigated the prevalence, severity and management of pain in advanced CKD patients attending Renal Palliative Care out-patient clinics under our Division. METHODS: Consecutive patients referred to the Renal Palliative Care Clinics at two hospitals under our Division from July 2012 to June 2016 were included. All the patients were managed according to a multi-disciplinary protocol led by palliative care specialists, including serial assessments with the Edmonton Symptom Assessment System. MEASUREMENTS: Response to pain management was defined as a difference by 2 points or more, and factors predictive of response were assessed by logistic regression. RESULTS: Data from 253 patients were analyzed. Of them 107 patients (42%) experienced pain symptoms: 45 patients (42.1%) rated their pain as mild (score 0-3), 51 (47.7%) as moderate (NRS score 4-6), and 11 (10.2%) as severe (score 7-10) by using numerical rating scale. The response rate to pain management was 53.2%. Neuropathic pain was a predictor for lack of response. DISCUSSION: Pain is common in advanced CKD patients receiving palliative care. While this seems to have been underrecognized, the symptom is potentially amenable to management. We recommend routine assessment of pain burden in this patient population.

Palliative care for a mentally incompetent end stage renal failure patient: why is it important?

People with intellectual disabilities are among the most disadvantaged groups in society. Here we report a mentally incompetent end stage renal failure (ESRF) patient with frequent emergency visits who made a significant improvement in symptoms control and reduction in casualty visits after introduction of renal palliative care service. Multidisciplinary approach would be useful in this case.

Reduction of acute hospital admissions and improvement in outpatient attendance by intensified renal palliative care clinic follow-up: the Hong Kong experience.

BACKGROUND: End-stage renal failure patients often fail to attend scheduled renal palliative care clinic (RPCC) follow-up because of acute hospital admissions, causing negative impact on patients' well-being and health care burden. MEASURES: The rates of RPCC attendance, emergency department (ED) attendance, and acute hospital admission per patient from January 2013 to June 2013 were analyzed. INTERVENTION: Patients who had more than one ED visit within three months were invited to intensify their RPCC follow-up schedule for symptom assessment, medical advice, psychosocial-spiritual care, and social worker support in the subsequent three months. OUTCOMES: Nineteen patients were included. The rate of ED attendance (2.63 vs. 0.63, P < 0.007) and acute hospital admission (1.59 vs. 0.58, P < 0.009) was reduced significantly after intensified follow-up. Clinic attendance rates improved from 56% to 85%. CONCLUSIONS/LESSONS LEARNED: Our pilot results suggested that intensifying RPCC follow-up minimized the utilization of acute medical services and improved outpatient attendance at RPCC.

Pain relief and palliative care in Hong Kong.

Palliative care started in Hong Kong in 1982. It gradually established an increasingly important role in cancer care. Hong Kong is fortunate because analgesic drugs and expertise from various disciplines and specialties in pain management are readily available. A holistic approach to pain management has been adopted; various dimensions of pain are assessed and managed, and outcomes evaluated. Despite efforts in public education, patient-related barriers to pain management still exist, and it is important that misconceptions of patients be corrected. To promote the quality of palliative care and pain management, efforts have been made to provide training of healthcare professionals, and on formation of professional societies for palliative care doctors and nurses. In Hong Kong, palliative medicine achieved medical specialty status in 1998, with a curriculum and a structured training program designed for doctors interested in this field. Efforts are underway to further improve palliative care and pain management in Hong Kong through the formation of consultative teams in general hospitals, enhanced liaison with nursing homes, and possibly by redefining the role of traditional Chinese medicine in pain management.

Effect of erythropoiesis-stimulating agents on hemoglobin level, fatigue and hospitalization rate in renal palliative care patients.

OBJECTIVES: To investigate the effect of erythropoiesis-stimulating agents (ESAs) on hemoglobin (Hb) level, fatigue and hospitalization rate in renal palliative care (PC) patients. METHOD: A retrospective cohort study was done between April 2011 and January 2013 in renal palliative care clinic of clustered hospitals in Hong Kong. The study participants included end-stage renal patients (CrCl < 15 ml/h) decided not for dialysis (ESA 39 patients; control 31 patients). From healthcare databases, we retrieved the patient demographics, laboratory results, reasons and time of hospitalizations during the study period. Fatigue was measured by Edmonton Symptom Assessment Scale. RESULTS: Most were elderly patients and about half of patients had underlying diabetes mellitus. Baseline mean Hb levels were similar (7.57 ± 0.97 g/dL for ESA vs 7.77 ± 0.72 g/dL for control). Mean Hb was raised significantly after 3 and 6 months of ESA injections (9.42 and 9.40 g/dL respectively, P < 0.05). Fatigue was reduced significantly at 3 and 6 months after treatment (P = 0.006 and P = 0.017 respectively). All-cause hospitalization was reduced significantly and there was a trend toward reduction in red blood cell transfusion requirement in the ESA group (P = 0.084). CONCLUSION: This study demonstrated that use of ESAs in renal PC was effective and might help in reducing fatigue and hospitalizations rate.

Combination therapy with low-dose metolazone and furosemide: a "needleless" approach in managing refractory fluid overload in elderly renal failure patients under palliative care.

BACKGROUND AND OBJECTIVE: End-stage renal failure (ESRF) patients under palliative care could live for months or even years after deciding not to start dialysis. They could experience significant symptom burden with recurrent fluid overload due to poor renal reserve. This could imply repeated hospital admissions for parenteral diuretics, which may destabilize their community support and limit their precious time spent with family. Diuretic therapy remains the cornerstone of managing fluid overload, but when per-oral administration become ineffective, parenteral diuretics may cause extra discomfort with potential infective complications. Metolazone, since its introduction in 1970s, has been proven effective in managing refractory heart failure, but whether its potential effect could be applied in ESRF patients not receiving dialysis is awaited to be proven. METHOD: In our case series, we recruited elderly renal failure patients under palliative care with refractory fluid overload resistant to oral furosemide (120-160 mg daily dose), which was successfully managed after addition of low-dose metolazone (2.5-5 mg) for short duration (2-5 days). Reasoning behind not to initiate intravenous diuretics was discussed. RESULTS: All patients show good tolerance to combined diuretics without significant blood pressure fluctuation or electrolytes disturbance. Peripheral and pulmonary edema was clinically improved. Body weight reduction of 2.0-5.0 kg was achieved. CONCLUSION: Our case series support the use of above regimen as a potential alternative in ESRF patients under palliative care, without bearing the parenteral route of treatment burden.

Use of sertraline for antihistamine-refractory uremic pruritus in renal palliative care patients.

BACKGROUND: Uremic pruritus is a common and distressing symptom occurring in 42% to 75% of end-stage renal dialysis (ESRD) patients, even in patients who are adequately dialyzed. METHODS: We conducted a retrospective review of consecutive patients who presented to the renal palliative care clinic in a single institution with pruritus refractory to antihistamines between April 2011 and September 2012. A total of 99 patients were screened during this period; 20 were eligible for this study. Sertraline was initiated at 25 mg daily orally for the first month, with dosage increment of 25 mg monthly according to clinical response up to a maximum of 200 mg daily as necessary. Patients were followed up every 2 to 4 weeks in the renal palliative care clinic. RESULTS AND CONCLUSIONS: Study results showed that low-dose sertraline was effective for antihistamine-refractory uremic pruritus in renal palliative care patients. Further placebo-blinded randomized-controlled studies are warranted to clarify our findings.