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.

Roles of specific drug therapies for severe pulmonary arterial hypertension in palliative care: a case report.

Pulmonary arterial hypertension (PAH) is an uncommon but potentially life-threatening illness. The elevated pulmonary arterial blood pressure will lead to right heart failure and even cardiopulmonary collapse if it is severe. Apart from general supportive measures, pulmonary hypertension-specific therapies (PHST) are available to slow down disease progression, but they are not curative. According to previous studies, many patients with severe PAH often had significant physical symptoms and psychological distress for both themselves and their families at the end of life. Moreover, they would have repeated admissions due to physical deterioration and decline in functioning associated with worsening in cardiac function. Some of these patients might suffer from unnecessary aggressive interventions and resuscitation because of lack of advance care planning discussion. As such, Palliative Care (PC) would be an important element as part of the overall management. Hereby, we reported a patient with severe PAH and schizoaffective disorder achieved good outcome from the use of combination PHST and PC input. Her physical and psychosocial needs could be addressed well by PC team. This case report showed the collaborative work between PC and parent teams. While parent team was able to manage the medical conditions related to PAH, however the physical and psychosocial needs should be addressed by PC team. More importantly, the PC team has essential roles of providing advance care planning discussions with the patient and help to reduce unnecessary interventions. Furthermore, PC would coordinate the community service to support her while staying at home. Roles of PHST will also be discussed in this case. Clinicians must take into account possible hemodynamic effects of any palliative intervention for PAH.

Early integrated palliative care for haematology cancer patients-the impact on symptom burden in Hong Kong.

BACKGROUND: Evidence showed that early palliative care could have many benefits in clinical outcomes for patients living with advanced medical illnesses. In fact, most of these studies have not involved patients with advanced haematologic cancer (HC), which are known to be associated with significant physical and psychological symptoms. In Hong Kong, an Early Integrated Palliative Care (EIPC) collaboration involving both Heamatology unit of Queen Mary Hospital (QMH) and the Palliative Medical Unit of Grantham Hospital (GH) has been started since early 2018 as a better way to improve the service gap. The HC patients failed 2 or more lines of cancer treatment are identified during the joint round and hematology clinic. Some of these patients will be referred to our PC services. Our joint PC clinic has multidisciplinary input from palliative care physicians, hematologists, and clinical psychologists. The clinic program is well coordinated and structured. The HC patients are initially seen by the parent team for disease treatment and then by GH PC team for symptom control and psychosocial care. METHODS: This was a retrospective study with a review of the clinical charts and electronic healthcare records of all patients who attended the Hematology PC clinic from June 2018 to September 2020. For the inclusion criteria, patients were found eligible if they had prospectively completed Edmonton Symptom Assessment Scale (ESAS) assessments for at least the initial and follow-up visits within a range of ≥7 days and ≤60 days of the first visit. RESULTS: Thirty-eight patients ultimately agreed to the referral. The mean age was 70.5 (12.5) years old. Twenty-five patients (66%) had myelodysplastic syndrome (MDS); 10 (26%) had acute myeloid leukemia (AML). Around 50-60% of patients reported significant symptoms of fatigue, anxiety, drowsiness, and anorexia; 42% of patients had significantly depressed moods while 37% had pain. There were significant symptom improvements for pain, depression, and anxiety after follow-up visits. CONCLUSIONS: The study showed that our EIPC program resulted in a significant reduction in some of the important symptom item scores, including pain, anorexia, anxiety, and depression, after the follow-up visits.

Impact of enhanced haematology palliative care services in patients with myelodysplastic syndrome and acute myeloid leukaemia: study protocol for a randomized controlled trial.

BACKGROUND: Patients with acute myeloid leukaemia (AML) and myelodysplastic syndrome (MDS) suffer from a significant symptom burden and psychological, spiritual, social needs comparable to patients with solid metastatic malignancy. Referral to palliative care services for these haematological patients remains limited or often confined to the last days of life. We pioneered a palliative care (PC) program integrated with standard haematological care. The purpose of this trial will study the interventions by the PC team and preliminary results in the clinical outcomes. METHODS: This project is a non-blinded, randomized, controlled trial. In this study, we examine the clinical outcomes of the integrated PC program for MDS/AML patients when the 2nd lines disease treatment failed and in the presence of prognostic indicators. In group 1, patients will receive standard haematological care associated with PC (i.e., intervention group). In contrast, in group 2, patients will receive standard haematological care only (i.e., control group) with PC service only on a request basis. Patients who join the program would have to complete a standardized questionnaire to assess their quality of life and their psychological and physical symptoms. RESULTS: This is to exam the impact of the early integrated palliative care with enhanced psychosocial interventions to both advanced MDS/AML patients and their primary family members in Hong Kong. DISCUSSION: This protocol will not display any result. If future results demonstrate that the enhanced PC interventions are effective, they will provide a quality treatment plan for patients with MDS/AML. TRIAL REGISTRATION: The Hong Kong University/Hospital Authority Hong Kong West Institutional Review Board (HKU/HA HKW IRB). The registration number is UW 19-824.

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.

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.

Intensive palliative care for patients with hematological cancer dying in hospice: analysis of the level of medical care in the final week of life.

Dying of hematological oncology patients often take place in respective hematology ward or intensive care unit rather than hospice. With the increased attention to quality palliative care for hematology patients, concerns regarding their level of medical care at end-of-life need to be addressed. We conducted a retrospective review of consecutive hematological oncology patients who succumbed in a palliative unit between July 2012 and August 2013. The primary outcome measure was their level of medical care received, including administration of antibiotics, total parenteral nutrition, blood sampling, GCSF injection and blood products transfusion, during their last seven days of life. During the last seven days of life, 85.7 % of patients had blood sampling and 23.8% of patients received G-CSF injection. Total parenteral nutrition was administered in 14.3% of patients. One-third of patients received transfusion of packed cells and nearly half of them received transfusion of platelet concentrates. Almost 90% of patients received antibiotics during their last week of life. Collaboration between hematology and palliative care has resulted in successful transition of hematologic cancer patients into hospice unit in their terminal phase of illness. However, their level of medical care, even approaching last seven days of life, remained intensive. Proper allocation of medical resources and future research regarding optimal end-of-life care for hematology patients are warranted.

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.

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.