Early Palliative Care for Patients with Hematologic Malignancies: Is It Really so Difficult to Achieve?

Evidence points to many benefits of “early palliative care,” the provision of specialist palliative care services upstream from the end of life, to improve patients’ quality of life while living with a serious illness. Yet most trials of early palliative care have not included patients with hematologic malignancies. Unfortunately, patients with hematologic malignancies are also known to have substantial illness burden, poor quality of life, and aggressive care at the end of life, including a greater likelihood of dying in the hospital, receiving chemotherapy at the end of life, and low hospice utilization, compared to patients with solid tumors. Given these unmet needs, one must wonder, why is palliative care so underutilized in this population? In this article, we discuss barriers to palliative care integration in hematology, highlight several reports of successful integration, and suggest specific indications for involving palliative care in the management of hematologic malignancy patients.     

Practice and problem in hospice and home palliative care

In Yamaguchi Red Cross Hospital, hospice services are provided under coordination of palliative care for outpatients and for inpatients and home palliative care. The Home Nursing Center plays the central roles in home palliative care and needs to exclusively provide home medical services. We served for 25% of the patients who died of terminal cancer in the palliative care unit or at home in Yamaguchi City. In the future hospice and palliative home care services, the system to allow patients to choose in-hospital care/outpatient care/home palliative care should be established. Home palliative care should be disseminated under the coordination of local municipalities, medical institutions and welfare service organizations so that patients and families can live meaningful lives at their home where they long lived as the place they chose to live.     

Issues and challenges in palliative care for children with cancer

Although the majority of children with cancer are cured of their illness, the children who die from their disease or complications require special care at the end of life. We present special issues and challenges unique to pediatric palliative care and suggest ways in which we can face these issues and address the challenges. The care must be family centered and balance the needs of the health-care system, the child, and the family. The way in which the care is delivered, the services provided, and the place in which that care is given are not carved into a simple protocol. Quality of life is an important concept that is often overlooked. Educational initiatives for patients, families, health-care providers, and third-party payers are essential. Reimbursement for palliative care services presents a large barrier to provision of appropriate services to all children and families in need. Hypothesis-driven research must be developed to help us learn more about how best to deliver end-of-life care to children and their families.     

Management of home care for the advanced cancer patient from the standpoint of home hospice

We offer home hospice care to patients with bowel obstruction associated with advanced gastrointestinal cancer, who hope to leave hospital and be cared at home, if they understand their condition and if their families also hope to live with the patients, so that the patients can live at home to the last breath. To master various palliative techniques and nursing care services are indispensable to assure home hospice care. In this case, 1. guidance about HPN, 2. guidance about pain control, 3. arrangement of visiting nurse services and 4. application for the long-term care insurance and procurement of the bed and other nursing goods needed to be completed before the discharge from the hospital, and it is important to complete these preparations rapidly in a short period. The 24-hour communication system and appropriate care for new symptoms are the key for successfully shifting to home hospice care. At the final stage, it is important to support families and repeatedly provide guidance for the peaceful death.     

Management of the system to allow the terminal cancer patients and their families to choose from in-hospital care, outpatient care and home care at Matsuyama Bethel hospital

Hospice ward at Matsuyama Bethel Hospital opened in April 2000. The hospice care has been provided for inpatients and outpatients. We considered a system that should be established to allow patients and their families to choose from in-hospital care, outpatient care and home care. The hospice consultation for outpatients opened in April 2004. The terminal cancer patients who are within 6 months of remaining days were hospitalized to the hospice ward. After making the hospice consultation for outpatients, hospice care services have been provided for terminal cancer patients including those with more than 6 months of remaining days under the coordination of palliative care for outpatients and inpatients.     

End-of-Life Management in Pediatric Cancer

Pediatric palliative care at the end-of-life is focused on ensuring the best possible quality of life for patients with life-threatening illness and their families. To achieve this goal, important needs include: engaging with patients and families; improving communication and relationships; relieving pain and other symptoms, whether physical, psychosocial, or spiritual; establishing continuity and consistency of care across different settings; considering patients and families in the decision-making process about services and treatment choices to the fullest possible and desired degree; being sensitive to culturally diverse beliefs and values about death and dying; and responding to suffering, bereavement, and providing staff support. Any effort to improve quality of palliative and end-of-life care in pediatric oncology must be accompanied by an educational strategy to enhance the level of competence among health care professionals with regard to palliative care and end-of-life management skills as well as understanding of individualized care planning and coordination processes.     

American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care

PURPOSE: An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This PCO addresses the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer. CLINICAL CONTEXT: Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services. By potentially improving quality of life (QOL), cost of care, and even survival in patients with metastatic cancer, palliative care has increasing relevance for the care of patients with cancer. Until recently, data from randomized controlled trials (RCTs) demonstrating the benefits of palliative care in patients with metastatic cancer who are also receiving standard oncology care have not been available. RECENT DATA: Seven published RCTs form the basis of this PCO. PROVISIONAL CLINICAL OPINION: Based on strong evidence from a phase III RCT, patients with metastatic non-small-cell lung cancer should be offered concurrent palliative care and standard oncologic care at initial diagnosis. While a survival benefit from early involvement of palliative care has not yet been demonstrated in other oncology settings, substantial evidence demonstrates that palliative care-when combined with standard cancer care or as the main focus of care-leads to better patient and caregiver outcomes. These include improvement in symptoms, QOL, and patient satisfaction, with reduced caregiver burden. Earlier involvement of palliative care also leads to more appropriate referral to and use of hospice, and reduced use of futile intensive care. While evidence clarifying optimal delivery of palliative care to improve patient outcomes is evolving, no trials to date have demonstrated harm to patients and caregivers, or excessive costs, from early involvement of palliative care. Therefore, it is the Panel's expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden. Strategies to optimize concurrent palliative care and standard oncology care, with evaluation of its impact on important patient and caregiver outcomes (eg, QOL, survival, health care services utilization, and costs) and on society, should be an area of intense research. NOTE: ASCO's provisional clinical opinions (PCOs) reflect expert consensus based on clinical evidence and literature available at the time they are written and are intended to assist physicians in clinical decision making and identify questions and settings for further research. Because of the rapid flow of scientific information in oncology, new evidence may have emerged since the time a PCO was submitted for publication. PCOs are not continually updated and may not reflect the most recent evidence. PCOs cannot account for individual variation among patients and cannot be considered inclusive of all proper methods of care or exclusive of other treatments. It is the responsibility of the treating physician or other health care provider, relying on independent experience and knowledge of the patient, to determine the best course of treatment for the patient. Accordingly, adherence to any PCO is voluntary, with the ultimate determination regarding its application to be made by the physician in light of each patient's individual circumstances. ASCO PCOs describe the use of procedures and therapies in clinical trials and cannot be assumed to apply to the use of these interventions in the context of clinical practice. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of ASCO's PCOs, or for any errors or omissions.     

Changing perspectives on palliative care

In the United States, hospice and palliative care are two distinct expressions of the hospice interdisciplinary team approach to end-of-life care, which originated in Great Britain in the 1960s. The hospice movement developed largely as a home-care program and alternative to conventional care. Hospice regulations and reimbursement allowances limit services to patients who are expected to die within 6 months and who forego many common oncologic treatments. On the other hand, palliative care is a more recent academic, medically mainstream discipline that attempts to integrate the hospice approach into oncology and other areas of clinical medicine from the earliest phases of diagnosis and treatment. Palliative care entertains all appropriate forms of care at any phase of an illness. In this review, we describe the key goals of palliative care, which include excellent pain and symptom control, psychosocial and spiritual support for the patient and family, informed decision-making, and coordinated services across the continuum of care. We focus on selected recent developments that are important to oncology practice: the role of artificial nutrition; management of malignant small bowel obstruction; communication tasks, such as information sharing, recognition of patient preferences, advanced-care planning, and bereavement care; and ethical principles related to the hastening of death.     

A psychological analysis of cancer patients and their next-of-kin

A supportive family environment is thought to enhance the capacity of cancer patients to adapt to their illness and treatment. But families, like patients, vary in their ability to cope with the impact of a cancer diagnosis in a family member and in their ability to fulfill the patient's needs. Increased understanding of the interrelationships between the family's and patient's responses to illness is of fundamental importance to the care of the patient with cancer. A heterogeneous sample of 201 cancer patients and their relatives were studied to determine compatibility of psychological status and to isolate clinical and demographic variables associated with psychological distress. Self-report tests of anxiety, mood disturbance, and mental health were applied. Despite large individual variation, the psychological status of patients and their matched relatives was closely correlated. The patient's treatment status affected both patients and their next-of-kin. Psychological well-being worsened according to whether patients were receiving follow-up care, active treatment, or palliative therapy. These data suggest a mutuality of psychological response between patients and their families. Supportive intervention for the patient or relative who manifests distress, therefore, should benefit both. Because patients and relatives involved with palliative treatment are most in need of psychological assistance, particular attention should be paid to this group, as is attempted in hospice care.     

Aggressiveness of care in a prospective cohort of patients with advanced NSCLC

BACKGROUND: Optimal end of life care of patients with terminal cancer is poorly understood. In this study, the aggressiveness of care is described in a cohort of patients with newly diagnosed advanced nonsmall-cell lung cancer (NSCLC). METHODS: Patients within 8 weeks of diagnosis of stage IIIb (with effusions) or IV NSCLC were enrolled in a study to examine the feasibility of involving palliative care services early in the provision of cancer care. Participants received standard oncology treatment and integrated palliative care. All patients were followed prospectively to assess anticancer therapy usage, hospital admissions, hospice utilization, and location of death. RESULTS: At the time of analysis, 40/46 (87%) of enrolled patients had died, with a median length of follow-up of 29.3 months. Aggressive care measures in the final month of life included rates of anticancer therapy (40%), emergency department visits (48%), and hospital admissions (50%). Sixty-five percent of patients received hospice care before death, with a median length of stay of 16 days. Patients with heightened baseline anxiety and mood symptoms were more likely to receive anticancer therapy at the end of life compared with those without such symptoms. CONCLUSIONS: This study demonstrates the frequent use of aggressive measures at the end of life among patients with advanced NSCLC in a tertiary care center, as shown by the number of patients receiving anticancer therapy within 30 days of death and brief utilization of hospice services. Further research is needed to identify predictors of aggressive care and to develop interventions enhancing decision-making at the end of life.     

“The Talk:” Discussing Hospice Care

Referral of advanced cancer patients for hospice care is of growing importance for oncologists. Hospice care is high quality and high value care that can benefit the patient and family’s experience of living and dying with terminal cancer. We are challenged to become a part of the shift from hospice meaning “giving up” to hospice meaning “giving more, but differently.” The purpose of this report is to frame a communication approach that any oncologist can incorporate into his or her practice that will facilitate the timely referral of appropriate patients for hospice care. Combining the strengths of oncology, palliative, and hospice providers in a complementary fashion allows us to serve patients and their families in the most meaningful way.     

How is place of death from cancer changing and what affects it? Analysis of cancer registration and service data

We aimed to compare trends in place of cancer death with the growth of palliative care and nursing home services, and investigate demographic, disease-related and area influences on individual place of death, using registration data for 216404 patients with breast, lung, colorectal and prostate cancer and aggregate data on services in South East England. Between 1985 and 1994 there was a trend away from hospital death (67-44%), to home (17-30%) and hospice death (8-20%). After 1995, this partly reversed. By 2002, hospital death rose to 47%, home death dropped to 23%, hospice death remained stable and nursing home death rose from 3 to 8%. Numbers of palliative care services increased, but trends for hospice and nursing home deaths most clearly followed the beds available. Cancer diagnosis and treatment influenced individual place of death, but between 1998 and 2002, age and area of residence were associated with most variation. Older patients and those living in more deprived areas died more often in hospitals and less often at home. Despite more palliative care services the proportion of people dying at home has not increased. Variation by age, deprivation and area of residence is unlikely to reflect patient preference. More active surveillance and planning must support policies for choice in end of life care.     

Advancing a comprehensive cancer care agenda for children and their families: Institute of Medicine Workshop highlights and next steps

This article highlights key findings from the “Comprehensive Cancer Care for Children and Their Families” March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clinician investigators, advocates, and members of the public to discuss emerging evidence and care models and to determine the next steps for optimizing quality‐of‐life outcomes and well‐being for children and families during pediatric cancer treatment, after treatment completion, and across the life spectrum. Participants affirmed the triple aim of pediatric oncology that strives for every child with cancer to be cured; provides high‐quality palliative and psychosocial supportive, restorative, and rehabilitative care to children and families throughout the illness course and survivorship; and assures receipt of high‐quality end‐of‐life care for patients with advancing disease. Workshop outcomes emphasized the need for new pediatric cancer drug development and identified critical opportunities to prioritize palliative care and psychosocial support as an integral part of pediatric cancer research and treatment, including the necessity for adequately resourcing these supportive services to minimize suffering and distress, effectively address quality‐of‐life needs for children and families at all stages of illness, and mitigate the long‐term health risks associated with childhood cancer and its treatment. Next steps include dismantling existing silos and enhancing collaboration between clinical investigators, disease‐directed specialists, and supportive care services; expanding the use of patient‐reported and parent‐reported outcomes; effectively integrating palliative and psychosocial care; and clinical communication skills development. CA Cancer J Clin 2016;66:398–407. © 2016 American Cancer Society.     

Hospice management of patients receiving cytotoxic chemotherapy: problems and opportunities.

In Britain, the specialty of palliative medicine continues to develop, encouraging the referral of patients early in the palliative phase of their illness. This had led to an increased number of patients receiving palliative chemotherapy and hospice care concurrently, posing special problems to the professionals involved. In this retrospective study, 52 patients were identified who received chemotherapy and hospice care simultaneously. Case notes were reviewed to reveal problems arising from sharing the duty of care. The poor quality of communication between professionals, perhaps reflecting a limited understanding of the various roles in patient care, we found to cause significant difficulties. The duration and discontinuation of cytotoxic therapy seems to be a particularly difficult matter. Hospice admission often signalled the end of this treatment. In a third of the patients, no decision was taken to stop chemotherapy despite the last dose being an average of just 1 week before death. The value of chemotherapy for patients who are too ill to return home is questioned. Seven patients were diagnosed as suffering from chemotherapy-induced sepsis and neutropenia either by hospice inpatient or home care teams, and were admitted to their acute centres accordingly. Most patients who died during the study period received terminal care in the hospice. Suggestions are made on improving professional education and communication, including the use of a ''chemotherapy card''.     

Statutory and voluntary sector palliative care in the community setting: National Health Service professionals' perceptions of the interface

Following the rapid service development brought about by the hospice movement, specialist palliative care services are involved with up to 50% of all patients dying with cancer in the United Kingdom, although the primary health care team remains the main provider of community based palliative care. This paper discusses findings from a survey of palliative care provision in the south west of England, and describes the perceptions of the primary care team (general practitioners and district nurses) about the interface between themselves and voluntary sector specialist palliative care providers (hospice in-patient units, hospice home care nurses and other charitably funded specialist palliative care nurses). The voluntary sector services are run with a mixture of funding from charitable sources (public donations, legacies, charitable trust moneys), and statutory funding (grants and recurrent contracts from central government, district health commissions, and local health care trusts). The interview and questionnaire data suggest that the voluntary sector services are perceived variably as substituting, supplementing, complementing and duplicating the services provided by the primary care team. Drawing attention to these dimensions and the ambivalence sometimes felt by general practitioners and district nurses could provide a means of negotiating consensus on appropriate professional tasks and facilitating interprofessional practice in what is increasingly a mixed economy of statutory and voluntary funded health care.     

Working with a palliative care team

The interdisciplinary team is fundamental to the successful delivery of quality palliative care. Ideally, the oncologist is an integral part of either the palliative care or hospice team and serves to maintain continuity of care through the end of life. In the United States, barriers can complicate the oncologist's easy integration into the hospice team as patients often remain at home. Also, there may be philosophical or clinical practice differences between oncology and palliative care at first glance. This article focuses on ways to overcome these potential obstacles and use differences in training to strengthen the team's impact. A significant part of oncology practice includes managing difficult symptoms, mitigating suffering, and discussing priorities of care--all elements of palliative medicine that oncologists perform daily. Participating on a palliative care team may be natural for oncologists, and some might elect to provide integrated palliative cancer care for patients throughout the course of their disease and at the end of life. Thus, there is a need to enrich the general oncologist's knowledge of specialized palliative medicine, as recommended by the major cancer organizations, including the American Society of Clinical Oncology and the European Society of Medical Oncology.It is important to know when to incorporate a palliative or hospice care team into the routine management of a cancer patient and what benefits these referrals can provide. Oncologists have an obligation to provide high-quality palliative care to all patients in an integrated fashion, including patients with advanced cancer enrolled in clinical trials for early therapeutics.     

Proxy perspectives regarding end-of-life care for persons with cancer

BACKGROUND: Each year, greater than a half million people die of cancer in the U.S. Despite progress in increasing access to palliative oncology services, end-of-life care still needs improvement. Measuring the quality of the end-of-life experience is difficult because of patient debility and reduced consciousness as death approaches. Family proxies have been proposed as valuable informants regarding the quality of end-of-life care. This article describes family proxy perspectives concerning care at the end of life in patients who died of advanced cancer. METHODS: In the context of a novel outpatient palliative care demonstration project, 125 family proxy respondents completed a structured survey by telephone 3 months to 6 months after the patient's death from breast, lung, or gastrointestinal cancer. Four key quality of care indicators were measured: decision-making and physician communication, location of death, hospice involvement, and end-of-life symptoms. RESULTS: Proxies reported that 78% to 81% of patients completed at least 1 form of advance directive and approximately half of them were helpful in guiding care. Communication with physicians regarding end-of-life treatment wishes occurred in 67% of cases, but only 57% of the patients actually made a plan with their physician to ensure that their wishes were followed. The majority of patients died in their location of choice, most often at home, and greater than half had hospice involvement for an average of 41.8 days before death. During the last week of life, the majority of patients experienced troublesome physical and emotional symptoms. CONCLUSIONS: Measurement of proxy perspectives is feasible as an indicator of the quality of end-of-life care, and the results of the current study provide actionable data for areas of improvement in palliative oncology care.     

Facilitating hospice discussions: a six-step roadmap

Hospice programs provide comprehensive, compassionate care to dying patients and their families. However, many patients do not enroll in hospice, and those who do generally receive hospice care only in the last weeks of life. Although patients and families rely on their physicians to discuss hospice, there is often inadequate communication between patients and physicians about end-of-life issues. We describe a Six-Step Roadmap for navigating discussions about hospice adapted from the SPIKES protocol for delivering bad news: setting up the discussion, assessing the patient's perception, inviting a patient to discuss individual goals and needs, sharing knowledge, empathizing with the patient's emotions, and summarizing and strategizing the next steps.     

A population‐based study on the determinants of hospice utilization in the last year of life for Taiwanese cancer decedents, 2001–2006

Background: No population‐based studies conducted outside Western countries have identified determinants of hospice utilization for all ages and cancer groups. Objective: To evaluate associations between hospice utilization in the last year of life and patient demographics, disease characteristics, physician specialty, hospital characteristics, and availability of healthcare resources at the hospital and regional levels in Taiwan. Methods: Retrospective cohort study using administrative data among 204, 850 Taiwanese cancer decedents, 2001–2006. Results: Rates of hospice utilization increased significantly (12.99–17.24%) over the study period. Hospice utilization was more likely for cancer patients who were female; over 65 years old; currently or formerly married; with ≤1 concurrent disease; diagnosed with breast cancer or cancer having a poorer prognosis; with distant metastasis, and longer illness duration (>2 months since diagnosis); receiving care in a teaching hospital or hospital with an inpatient‐hospice unit; and receiving care in a region with greater density of inpatient‐hospice beds. However, patients with hematological malignancies and esophageal cancer were less likely to use hospice care. Conclusions: Despite the 1.33 times increase in hospice utilization among cancer patients who died from 2001 to 2006, only one in six Taiwanese cancer decedents used hospice care in their last year of life. Our findings regarding determinants of hospice utilization should be used by healthcare professionals and policy makers to guide the development of policies and interventions that facilitate prognosis disclosure and EOL care discussions between physicians and patients, especially younger patients, to help the transition from curative to palliative care. Copyright © 2010 John Wiley & Sons, Ltd.     

Palliative care needs in a District General Hospital: a survey of patients with cancer

Although sophisticated treatment of cancer requires the resources of specialist cancer treatment centres, most patients with cancer still undergo initial diagnostic investigation and treatment in district general hospitals (DGHs). The DGH frequently remains the principle site of referral for management of symptoms and terminal care. This survey was carried out at a DGH which has no palliative care services. It aimed to demonstrate the need for such services by collecting data on inpatients with cancer and interviewing members of the nursing staff. Of 63 patients studied, 76% were admitted as emergencies, 50% had newly diagnosed cancer and 27% died in hospital. The majority (85%) were cared for on general medical, surgical and care of the elderly wards. Assessment of patients' symptoms suggested thet 39 (62%) might have benefited from the services of a palliative care team. Interviews with nursing staff highlighted the need for improved communication between professionals, increased staff education and support, and highlighted the particular difficulties that exist in caring for patients with advanced cancer and their families on busy acute general hospital wards. Imaginative and flexible approaches to the design and delivery of palliative services are essential if patients with cancer in DGHs are to receive the highest standards of care at all stages of their illness.