Supportive and palliative care in hemato-oncology: how best to achieve seamless integration and subspecialty development?

While recent medical advances have led to cure, remission, or long-term disease control for patients with hematologic malignancy, many still portend poor prognoses, and frequently are associated with significant symptom and quality of life burden for patients and families. Patients with hematological cancer are referred to palliative care (PC) services less often than those with solid tumors, despite higher inpatient mortality and shorter interval between first consultation and death. The complexity of individual prognostication, ongoing therapeutic goals of cure, the technical nature and complications of treatment, the intensity of medical care even when approaching end of life, and the speed of change to a terminal event all pose difficulties and hinder referral. A modified palliative care model is an unmet need in hemato-oncology, where PC is introduced early from the diagnosis of hematological malignancy, provided alongside care of curative or life-prolonging intent, and subsequently leads to death and bereavement care or cure and survivorship care depending on disease course. From current evidence, the historical prioritization of cancer care at the center of palliative medicine did not guarantee that those diagnosed with a hematological malignancy were assured of referral, timely or otherwise. Hopefully, this article can be a catalyst for debate that will foster a new direction in integration of clinical service and research, and subspecialty development at the interface of hemato-oncology and palliative care.

Palliative care for cancer patients with severe COVID-19: the challenge of uncertainty.

Cases of coronavirus disease 2019 (COVID-19) are escalating rapidly across the globe, with the mortality risk being especially high among those with existing illness and multi-morbidity. The immunosuppressed status of some cancer patients increases their risk of infection compared with the general population, and cancer treatment within 2 weeks of COVID-19 diagnosis was reported as a risk factor for developing severe events. Palliative care workers have an essential role in the response to COVID-19 by responding rapidly and flexibly; ensuring protocols for symptom management are available, considering redeploying staffs and volunteers to provide psychosocial and bereavement care and using technology to communicate with patients and carers.

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.

Management of Anemia in Renal Palliative Care Clinic: A Patient-Centered Approach.

BACKGROUND: Despite the growing needs in nondialytic alternatives for conservative kidney management, few studies have examined the management of anemia in palliative care (PC) outpatient clinics, which represent the key point of entry for timely access to PC. OBJECTIVE: A retrospective study to review for a patient-centered approach in anemia management and symptom control. RESULTS: Over the study period from July 2020 to March 2023, a total of 158 patients were seen at our renal PC clinic, 47 were included in data analysis. Patients had a mean age and glomerular filtration rate of 81.3 (9.5) years and 8.6 (5.3) mL/min/1.73 m2, and 68.1% and 44.7% were receiving erythropoiesis-stimulating agents (ESAs) and iron supplements respectively, with only 4.3% of patients required transfusion over past six months. Mean hemoglobin was maintained at 9.8 (1.4) g/dL, with a mean POS-S renal score of 4.7 (3.2). Majority of patients (93.6%) had satisfactory rating on "weakness and lack of energy" item. CONCLUSION: A patient-centered approach in anemia management at renal PC outpatient clinics may alleviate symptom burden and minimize transfusion requirement.

"What you Say Matters": Review of Clinical Outcome of Advanced Medical Directives Between Cancer and Non-cancer Patients in a Chinese Culture Society.

INTRODUCTION: Advance medical directives (AMD) are statements made by individuals indicating the life-sustaining treatment that they would refuse in the future when they lost their mental capacity for medical decisions. While the proposal for the AMD legislation is ongoing locally in Hong Kong SAR, there are limited reviews on the clinical outcomes associated with it. OBJECTIVE: To provide a comprehensive review on clinical outcomes of signed AMD. METHODOLOGY: Retrospective, multi-center study, which includes AMD signed within five cluster hospitals. Records of signed AMD from 1st JAN 2020 to 31st DEC 2022 were retrieved from a central registry. Clinical information of each patient was obtained from the electronic patient record. RESULT: 456 patients with documented AMD were included in the study. 91.6% of AMD were signed by palliative care (PC) team. Majority (74.6%) of the patients were accompanied by family members or friends when AMD were signed. The concordance rate between the AMD and the medical care received was 89.5%. No patient revoked their AMD. Cancer and non-cancer patients showed similar rates of AMD concordance, frequency of Accident & Emergency Department (AED) visits or acute ward admissions, duration of hospital stays in the 30 days before death, and prevalence of receiving invasive or intensive treatments. CONCLUSION: Our study demonstrated that PC team currently plays a pivotal role in AMD completion, and AMD remains important in ensuring patients' care preferences are executed across different medical conditions. With the upcoming AMD legislation in Hong Kong SAR, adequate promotion and education should be launched.

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.

Combating Coronavirus Disease-2019 Outbreak in Long-Term Care Facilities for Frail Older Adults: Preventive Measures and Palliative Care Go Hand-in-Hand.

While the whole population is at risk from infection with the coronavirus, older people-often frail and subject to multimorbidity-are at the highest risk for the severe and fatal disease. Despite strict infection control and social distancing measures, frail adults in long-term care facilities may be at particular risk of transmission of respiratory illness. Treatment decisions are often complex attributed to the heterogeneity of this population with regards to different geriatric domains such as functional status, comorbidity, and poly-pharmacy. While measures must be taken to prevent the novel coronavirus from spreading through these facilities, it is also essential that residents with coronavirus disease 2019 (COVID-19) have access to the symptom management and support they want and deserve. What most nursing home residents want during the course of their illness is to be able to stay in their facilities, to be surrounded by the people they love most, and to feel relief from their physical and emotional pain. By addressing the limited access to hospice and palliative care delivery in nursing homes, we can prevent unnecessary suffering and pain from COVID-19 as well as lay the groundwork for improving care for all residents moving forward.

Dealing With Death Taboo: Discussion of Do-Not-Resuscitate Directives With Chinese Patients With Noncancer Life-Limiting Illnesses.

BACKGROUND: Noncancer patients with life-limiting diseases often receive more intensive level of care in their final days of life, with more cardiopulmonary resuscitation performed and less do-not-resuscitate (DNR) orders in place. Nevertheless, death is still often a taboo across Chinese culture, and ethnic disparities could negatively affect DNR directives completion rates. OBJECTIVES: We aim to explore whether Chinese noncancer patients are willing to sign their own DNR directives in a palliative specialist clinic, under a multidisciplinary team approach. DESIGN: Retrospective chart review of all noncancer patients with life-limiting diseases referred to palliative specialist clinic at a tertiary hospital in Hong Kong over a 4-year period. RESULTS: Over the study period, a total of 566 noncancer patients were seen, 119 of them completed their own DNR directives. Patients had a mean age of 74.9. Top 3 diagnoses were chronic renal failure (37%), congestive heart failure (16%), and motor neuron disease (11%). Forty-two percent of patients signed their DNR directives at first clinic attendance. Most Chinese patients (76.5%) invited family caregivers at DNR decision-making, especially for female gender (84.4% vs 69.1%; P = .047) and older (age >75) age group (86.2% vs 66.7%; P = .012). Of the 40 deceased patients, median time from signed directives to death was 5 months. Vast majority (95%) had their DNR directives being honored. CONCLUSION: Health-care workers should be sensitive toward the cultural influence during advance care planning. Role of family for ethnic Chinese remains crucial and professionals should respect this family oriented decision-making.

Advance Care Planning in Chinese Seniors: Cultural Perspectives.

In traditional Chinese culture, death was sensitive and mentioning it was sacrilegious and to be avoided. Many Chinese families object to telling the patient a "bad" diagnosis or prognosis, which may hinder the chance in advance care planning (ACP) discussion. While death remains an inevitable consequence of being born, as such, it is important that human beings recognize its inevitability and plan ahead of a good death. Advance care planning enables patients to assert their care preferences in the event that they are unable to make their own medical decisions. In China, a rapidly aging demographic presents additional challenges to quality end-of-life care. The adoption of palliative care in China has been slow, with a curative approach dominating health-care strategies. In this article, we would summarize China's current situation in population aging, palliative care development, and Chinese cultural values on death and dying and review the advance directive and end-of-life care preferences among Chinese elderly patients. Current literature recommended the use of indirect communication approaches to determine Chinese seniors' readiness. In individual practice, using depersonalized communication strategies to initiate the discussion was recommended to determine older Chinese seniors' readiness.

End-of-life Characteristics and Palliative Care Provision for Patients With Motor Neuron Disease.

Motor neuron disease (MND) is a neurodegenerative disease and manifested as progressive decline in physical, respiratory, swallowing and communication function, and ultimately death. Traditional model of care was fragmented and did not match with multifacet needs of patients and carers. Furthermore, there could be lack of integrated care at end of life for patients with MND in most lower- and middle-income countries or in places with inadequate palliative care (PC) coverage. In view of this, a special workgroup for patients with MND, which includes neurologist, respiratory physician, rehabilitation specialist, and PC physician was formed in Hong Kong since year 2011. In various disease phase, each specialty team plays a leading role in coordinated care of patients with MND. From July 2011 to June 2017, a total of 52 patients with MND were referred for PC; 41 deceased patients with MND were included into data analysis. Major cause of death remains pneumonia (54.8%) and respiratory failure (40.5%). Most of the patients with MND (66.7%) died in acute ward and neurology units, with only 11.9% dying in PC units and hospices. The PC team plays a major role in advance care planning (ACP), and most patients had their ACP documented at second or third PC clinic visit (93.8%). Patients with MND often have limitations in mobility, swallowing difficulty, respiratory insufficiency requiring ventilator support, and various psychosocial needs. This highlighted the importance of early PC referral.

Supportive & palliative interventions in motor neurone disease: what we know from current literature?

Although there is no cure for motor neurone disease (MND), the advent of supportive interventions including multidisciplinary care (MDC) has improved treatment interventions and enhanced quality of life (QOL) for MND patients and their carers. Our integrative review showed evidence-based MDC, respiratory management and disease-modifying therapy that have improved the outcomes of patients diagnosed with MND. Supportive approaches to nutritional maintenance and optimization of symptomatic treatments, including management of communication and neuropsychiatric issues, improve the QOL for MND patients. Notwithstanding improvement to care and QOL, survival benefit has become evident with the advent of a MDC framework, early treatment with non-invasive ventilation (NIV). In addition, weight maintenance remains critical, as weight loss is associated with more rapid disease progression. The endof- life phase is poorly defined in MND patients and treatment remains challenging, yet effective symptom control through palliative care (PC) is achievable and essential.

The Effect of Using an Electric Fan on Dyspnea in Chinese Patients With Terminal Cancer.

BACKGROUND: Fan therapy is often suggested for relieving the symptom of dyspnea in patients with advanced cancer, but relevant literature among Asians is limited. OBJECTIVE: Phase 2 clinical trial to assess the clinical feasibility and outcome of using an electric fan to alleviate the symptom of dyspnea in Chinese patients with advanced cancer. METHODS: Thirty patients with advanced cancer having unresolved breathlessness were recruited from Hospice and Palliative Care Centre of Kiang Wu Hospital in Macau. Participants were randomly and equally allocated to the experimental group and the control group, respectively. OUTCOME MEASURES: Verbal numerical rating scale (NRS) of breathlessness, respiratory rate (RR), and saturation of peripheral oxygen (SpO2) was collected before and after the intervention. RESULTS: T test was used to analyze the data collected. There was a significant difference in the NRS scores of the experimental group ( P < .01), indicating a significant reduction in the patients' sensation of breathlessness after fan therapy, whereas no significant difference was found in the objective statistic results of RR and SpO2. No significant difference ( P > .05) was found in the control group for all the 3 variables before and after routine treatment. CONCLUSION: The results of the study suggested that fan therapy could be effective in alleviating dyspnea in Chinese patients with advanced cancer. It should be considered as one of the nonpharmacological treatment option. Future large-scale phase 3 clinical trials are warranted.

Use of Erythropoietin-Stimulating Agents (ESA) in Patients With End-Stage Renal Failure Decided to Forego Dialysis: Palliative Perspective.

Normochromic normocytic anemia is a common complication in chronic kidney disease (CKD) and is associated with many adverse clinical consequences. Erythropoiesis-stimulating agents (ESAs) act to replace endogenous erythropoietin for patients with end-stage renal disease having anemia. Today, ESAs remain the main tool for treating anemia associated with CKD. In current practice, the use of ESA is not limited to the patients on renal replacement therapy but has extended to nondialysis patients under palliative care (PC). Current evidence on ESA usage in patients with CKD decided to forego dialysis often have to take reference from studies conducted in other groups of patients with CKD, including pre-dialysis patients and those on renal replacement therapy. There is paucity of studies targeting use of ESAs in renal PC patients. Small-scale retrospective study in renal PC patients had suggested clinical advantage of ESAs in terms of hemoglobin improvement, reduction in fatigue, and hospitalization rate. With the expected growth in elderly patients with CKD decided to forego dialysis and manage conservatively, there remains an urgent need to call for large-scale prospective trial in exploring efficacy of ESAs in this population, targeting on quality of life and symptoms improvement outcome. This article also reviews the mechanism of action, pharmacology, adverse effects, and clinical trial evidence for ESA in patients with CKD under renal PC.

The development of neurology palliative care service for motor neuron disease (MND) patients: Hong Kong experience.

BACKGROUND: Motor neuron disease (MND) is a neurodegenerative disease characterized by loss of motor neurons in the spinal cord, brainstem and motor cortex. Clinically it is manifested as progressive decline in physical, respiratory, swallowing and communication function and ultimately death. Traditional model of care was fragmented and did not match with patients and carers multi-facet needs. METHODS: A special workgroup for MND patients that includes neurologist, respiratory physician, rehabilitation specialist and palliative care (PC) physician was formed in Hong Kong since year 2013. In various disease phase, each specialty team play a leading role in coordinated care of MND patients. RESULTS: From Apr 2013 to Mar 2015, 41 patients newly diagnosed with MND were cared in our model. 96.4% agreed to participate in the ACP discussion. Seventy-five percent of them opted for do-not-attempt cardiopulmonary resuscitation (DNACPR) and no intubation/mechanical ventilation. There were 16 (51.6%) of patients passed away within the review period. All of them succumbed with no CPR performed which was honoring their wish. The average duration under PC was 118 days. CONCLUSIONS: Strategies toward standardizing care delivery for MND patients and carers may help to address the physical, psychosocial and spiritual needs of MND patients. The experience shared from this article conceptualizes the roles of various multi-disciplinary team members, with emphasis paid on PC team position in taking care of advanced MND patients.

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.