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.     

Epilepsy in the end-of-life phase in patients with high-grade gliomas

Epilepsy is common in patients with brain tumors. Patients presenting seizures as the first sign of a malignant glioma are at increased risk of recurrent seizures despite treatment with antiepileptic drugs. However, little is known about the incidence of epilepsy in the last stage of disease and in the end–of-life phase of brain tumor patients. We retrospectively analyzed the incidence of seizures in the last months of life in a series of patients affected by high-grade gliomas who were assisted at home during the whole course of the disease until death. A total of 157 patients were available for analysis. Of these patients, 58 (36.9 %) presented seizures in the last month before death. The risk of seizures in the end-of-life phase is higher in patients presenting previous history of epilepsy, particularly in patients with late-onset epilepsy. Out of the 58 patients presenting seizures in the last month of life, 86.2 % had previously had seizures and 13.8 % were seizure free. Most patients may encounter swallowing difficulties in taking anticonvulsants orally due to dysphagia and disturbances of consciousness, thus anticonvulsant treatment needs to be modified in advance. Loss of seizure control in the end-of-life phase may influence the quality of life of patients and their caregivers.     

End-of-life symptoms and care in patients with primary malignant brain tumors: a systematic literature review

The aim of this study was to review the literature on end-of-life symptoms and end-of-life care of adult patients with high-grade glioma (HGG). Despite aggressive treatment, the survival of HGG patients is limited. Symptom management is paramount to maintain maximum quality of life. The goal of this review is to identify the symptoms and the potential needs of brain tumor patients and their caretakers at the end of life. A systematic literature search in PubMed and Cochrane databases was performed for the years 1946 through August 6th, 2013. A total of 6,196 article citations were identified. Based on predefined criteria, 32 articles were retained for detailed examination. Of these 32 articles, only 7 focused on end-of-life symptoms and interventions. All 7 studies were retrospective and focused on inpatients (3), outpatients (2) or both (2). All but one study involved formal hospice. Drowsiness and loss of consciousness was the most common symptom (1–90 %). Poor communication (64 and 90 %), focal neurological deficits (3–62 %), seizures (3–56 %), dysphagia (7–85 %) and headaches (4–62 %) were also frequent. Only 4 studies reported on palliative interventions. Our systematic review shows that HGG patients in the end-of-life phase have a consistently high symptom burden especially during the last days of life. There is no prospective or conclusive literature describing end-of-life symptom management in HGG patients. Prospective research will be needed to further define symptoms and management in the end-of-life phase.     

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.     

Palliative Care for Patients with Gynecologic Cancer in Japan:A Japan Society of Gynecologic Palliative Medicine (JSGPM) Survey

Purpose: To evaluate palliative care for patients with gynecologic cancer in Japan. Materials and Method: A questionnaire asking facility characteristics, systems to coordinate palliative care, current status of end-of-life care, provision of symptom relief, palliative radiation therapy and chemotherapy, and cases of death from gynecological cancer, was mailed to facilities treating gynecologic cancer. Results: A total of 115 facilities (29.3% of the total) responded to the questionnaire. Of these, 33.0 (29.0%) had a palliative care ward. End-of-life care was managed by obstetricians and gynecologists in 72.0% of the facilities. The site where end-of-life care was provided was most often a ward in the department where the respondent worked. The waiting period for transfer to a hospice was 2 weeks or more in 52% of facilities. Before the start of primary treatment, pain control was managed by obstetrians and gynecologists in 98.0% of facilities. Palliative radiation therapy or chemotherapy was administered at 93.9% and 92.0% of facilities, respectively. Of the 115 facilities, 34.0 (29.6%) reported cases of death from gynecological cancer. There were 1,134 cases of death. The median time between the last cycle of chemotherapy and death was 85 days for all gynecological cancers. The proportion of patients receiving chemotherapy in the last 30 and 14 days of life were 17.4% and 7.1%, respectively. Conclusions: This large-scale survey showed characteristics of palliative care given to patients with gynecologic cancer in Japan. Assessment of death cases showed that the median time between the last cycle of chemotherapy and death was relatively short.     

Palliative care team support services by the hospital for home palliation

At Osaka National Hospital, we opened a palliative care team (PCT) since July 2004. The PCT advises the symptom management of cancer patients and supports patients' decision making. By March 2006, 355 consecutive cancer patients referred to the PCT, including 221 patients with psychiatric symptoms. The duration of the treatments for psychiatric symptoms were extended longer than for physical symptoms (physical symptoms: 47.7 days, depression: 60.4, delirium: 56.0, adjustment disorders: 57.4; p < 0.05). The reasons for this prolongation are that psychiatric symptoms (especially delirium) are often overlooked, and that home doctors and visiting nurses often hesitate to take on the home medical care because of unfamiliarity with them. The management of psychiatric symptoms at home is important for appropriate end-of-life care. The PCT and regional doctors have to work closely in cooperating with the successive palliation when the patient is transformed to home medical care.     

Differences in attitudes and beliefs toward end-of-life care between hematologic and solid tumor oncology specialists

BackgroundPatients with hematologic malignancies often receive aggressive care at the end-of-life. To better understand the end-of-life decision-making process among oncology specialists, we compared the cancer treatment recommendations, and attitudes and beliefs toward palliative care between hematologic and solid tumor specialists.Patients and methodsWe randomly surveyed 120 hematologic and 120 solid tumor oncology specialists at our institution. Respondents completed a survey examining various aspects of end-of-life care, including palliative systemic therapy using standardized case vignettes and palliative care proficiency.ResultsOf 240 clinicians, 182 (76%) clinicians responded. Compared with solid tumor specialists, hematologic specialists were more likely to favor prescribing systemic therapy with moderate toxicity and no survival benefit for patients with Eastern Cooperative Oncology Group (ECOG) performance status 4 and an expected survival of 1 month (median preference 4 versus 1, in which 1 = strong against treatment and 7 = strongly recommend treatment, P < 0.0001). This decision was highly polarized. Hematologic specialists felt less comfortable discussing death and dying (72% versus 88%, P = 0.007) and hospice referrals (81% versus 93%, P = 0.02), and were more likely to feel a sense of failure with disease progression (46% versus 31%, P = 0.04). On multivariate analysis, hematologic specialty [odds ratio (OR) 2.77, P = 0.002] and comfort level with prescribing treatment to ECOG 4 patients (OR 3.79, P = 0.02) were associated with the decision to treat in the last month of life.ConclusionsWe found significant differences in attitudes and beliefs toward end-of-life care between hematologic and solid tumor specialists, and identified opportunities to standardize end-of-life care.     

Addressing the Palliative Setting in Advanced Lung Cancer Should Not Remain a Barrier: A Multicenter Study

Background

Implementation of early palliative care (EPC) into daily oncology practice remains difficult. One of the barriers preventing oncologists from starting EPC is open communication about the palliative setting. The aim of this study was to investigate the relevance of this communication barrier.

Symptoms and problems in the end-of-life phase of high-grade glioma patients

Despite multimodal treatment, it is not possible to cure high-grade glioma (HGG) patients. Therefore, the aim of treatment is not only to prolong life, but also to prevent deterioration of health-related quality of life as much as possible. When the patient''s condition declines and no further tumor treatment seems realistic, patients in the Netherlands are often referred to a primary care physician for end-of-life care. This end-of-life phase has not been studied adequately yet. The purpose of this study was to explore specific problems and needs experienced in the end-of-life phase of patients with HGG. We retrospectively examined the files of 55 patients who received treatment in our outpatient clinic and died between January 2005 and August 2008. The clinical nurse specialist in neuro-oncology maintained contact on a regular basis with (relatives of) HGG patients once tumor treatment for recurrence was no longer given. She systematically asked for signs and symptoms. The majority of the patients experienced loss of consciousness and difficulty with swallowing, often arising in the week before death. Seizures occurred in nearly half of the patients in the end-of-life phase and more specifically in one-third of the patients in the week before dying. Other common symptoms reported in the end-of-life phase are progressive neurological deficits, incontinence, progressive cognitive deficits, and headache. Our study demonstrates that HGG patients, unlike the general cancer population, have specific symptoms in the end-of-life phase. Further research is needed in order to develop specific palliative care guidelines for these patients.     

Hospice and palliative care in the outpatient department

In the medical environment, information disclosure to patients and respect of autonomy have spread rapidly. Today, many terminally-ill cancer patients wish to spend as much time at home as possible. In such situations the patient who has been informed that curative treatments are no longer expected to be beneficial can now hope to receive home care and visiting care from hospice/palliative care services. The essential concepts of hospice/palliative care are symptom management, communication, family care and a multidisciplinary approach. These concepts are also important in the outpatient department. In particular, medical staff need to understand and utilize management strategies for common symptoms from which terminally-ill cancer patients suffer (ex. cancer pain, anorexia/fatigue, dyspnea, nausea/vomiting, constipation, hypercalcemia and psychological symptoms). They also need to know how to use continuous subcutaneous infusion for symptom management in the patients last few days. The present paper explains the clinical practices of hospice/palliative care in the outpatient department. Also discussed is support of individual lives so that maximum QOL is provided for patients kept at home.     

Mapping the patterns of care, the receipt of palliative care and the site of death for patients with malignant glioma

High-grade malignant glioma patients face a poor prognosis, preceded by rapid functional and neuro-behavioural changes, making multidisciplinary care incorporating supportive and palliative care important. This study aimed to quantify the association between symptoms, receipt of supportive and palliative care and site of death. We undertook a retrospective cohort study between 2003 and 2009 of incident malignant glioma cases who survived for at least 120 days between their first hospitalisation and their death (n = 678) in Victoria, Australia, using linked hospital, emergency department and death data. The median age of patients was 62 years, 40 % were female, and the median survival was 11 months. Twenty-six percent of patients died outside of hospital, 49 % in a palliative care bed/hospice setting and 25 % in an acute hospital bed. Patients having 1 or more symptoms were more than five times as likely to receive palliative care. Patients who receive palliative care are 1.7 times more likely to die outside of hospital. In conclusion malignant glioma patients with a high burden of symptoms are more likely to receive palliative care and, in turn, patients who receive palliative care are more likely to die at home.     

Quality of End-of-Life Cancer Care in Canada: A 12-Year Retrospective Analysis of Three Provinces’ Administrative Health Care Data Evaluating Changes over Time

This retrospective cohort study of cancer decedents during 2004–2015 examined end-of-life cancer care quality indicators (QIs) in the provinces of British Columbia (BC), Ontario, and Nova Scotia (NS). These included: emergency department use, in-patient hospitalization, intensive care unit admissions, physician house calls, home care visits, and death experienced in hospital. Ontario saw the greatest 12-year decrease in in-hospital deaths from 52.8% to 41.1%. Hospitalization rates within 30 days of death decreased in Ontario, increased in NS, and remained the same in BC. Ontario’s usage of aggressive end-of-life measures changed very little, while BC increased their utilization rates. Supportive care use increased in both NS and Ontario. Those who were male or living in a lower income/smaller community (in Ontario) were associated with a decreased likelihood of receiving supportive care. Despite the shift in focus to providing hospice and home care services, approximately 50% of oncology patients are still dying in hospital and 11.7% of patients overall are subject to aggressive care measures that may be out of line with their desire for comfort care. Supportive care use is increasing, but providers must ensure that Canadians are connected to palliative services, as its utilization improves a wide variety of outcomes.     

Variations in the quality and costs of end-of-life care,preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study

Background  

Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients.     

RELIEF: A Digital Health Tool for the Remote Self-Reporting of Symptoms in Patients with Cancer to Address Palliative Care Needs and Minimize Emergency Department Visits

The lack of timely symptom reporting remains a barrier to effective symptom management and comfort for patients with cancer-related palliative care needs. Poor symptom management at home can lead to unwanted outcomes, such as emergency department visits and death in hospital. We developed and evaluated RELIEF, a remote symptom self-reporting app for community patients with palliative care needs. A pilot feasibility study was conducted at a large, community hospital in Ontario, Canada. Patients self-reported their symptoms each morning using validated clinical symptom measures and RELIEF would alert for worsening or severe symptoms. RELIEF alerts were monitored by palliative care nurses who would then contact patients to determine if appropriate clinical intervention could be initiated to avoid unnecessary emergency department visits. A total of 20 patients were recruited to use RELIEF for two months. Patients completed 80% of daily self-report assessments; 133 alerts were trigged, half of which required clinical intervention. No patient visited the emergency department for symptom management during the study. Clinical staff estimated five emergency department visits were avoided because of RELIEF—saving an estimated cost of over CAD 60,000. RELIEF is a feasible and acceptable method for the remote monitoring of patients with palliative care needs through regular symptom self-reporting.     

Home palliative care of brain tumor patients from our clinic

This study investigated whether or not home palliative care of brain tumor patients was possible and various ideas for accomplishing this, over the 2 1/2 years since our clinic was opened. There were 22 patients, aged 42-72 years, comprising 7 cases of glioblastoma, 14 cases of metastatic brain tumor, and 1 case of unknown origin. The control of intracranial hypertension and attacks of convulsion was possible with oral medication or suppositories, but not injection. The prognosis of cancer patients which changed home care showed no remarkable changes, and the home care rate was 53%. Malignant brain tumor patients were able to enjoy time with their families at home during the terminal stage, and die with dignity.     

Quality of End-of-Life Care in Gastrointestinal Cancers: A 13-Year Population-Based Retrospective Analysis in Ontario,Canada

Population-based quality indicators of either aggressive or supportive care at end of life (EOL), especially when specific to a cancer type, help to inform quality improvement efforts. This is a population-based, retrospective cohort study of gastrointestinal (GI) cancer decedents in Ontario from 1 January 2006–31 December 2018, using administrative data. Quality indices included hospitalizations, emergency department (ED) use, intensive care unit admissions, receipt of chemotherapy, physician house call, and palliative home care in the last 14–30 days of life. Previously defined aggregate measures of both aggressive and supportive care at end of life were also used. In our population of 69,983 patients who died of a GI malignancy during the study period, the odds of experiencing aggressive care at EOL remained stable, while the odds of experiencing supportive care at EOL increased. Most of our population received palliative care in the last year of life (n = 65,076, 93.0%) and a palliative care home care service in the last 30 days of life (n = 45,327, 70.0%). A significant number of patients also experienced death in an acute care hospital bed (n = 28,721, 41.0%) or had a new hospitalisation in the last 30 days of life (n = 33,283, 51.4%). The majority of patients received palliative care in the last year of life, and a majority received a palliative care home service within the last 30 days of life. The odds of receiving supportive care at EOL have increased over time. Differences in care exist according to income, age, and rurality.     

Issues related to family history of cancer at the end of life: a palliative care providers’ survey

Addressing the concerns of end-of-life patients or their relatives about their family history of cancer could benefit patients and family members. Little is known about how palliative care providers respond to these concerns. The purpose of this pilot study was to assess palliative care providers’ knowledge about familial and hereditary cancers and explore their exposure to patients’ and relatives’ concerns about their family history of cancer, and their self-perceived ability to deal with such concerns. A cross-sectional survey was conducted in the Quebec City (Canada) catchment area among palliative care professionals. Fifty-eight palliative care professionals working in hospice, home care and hospital-based palliative care units completed the questionnaire. All physicians and 63% of nurses occasionally addressed concerns of patients and relatives about their family history of cancer, but they reported a low confidence level in responding to such concerns. They also showed knowledge gaps in defining features of a significant family history of cancer, and most (78%) would welcome specific training on the matter. Our findings highlight the relevance of offering education and training opportunities about familial cancers and associated risks to palliative care providers. The needs and concerns of end-of-life patients and their families need to be explored to ensure palliative care providers can adequately assist patients and their relatives about their family history of cancer. Ethical implications should be considered.     

Patterns of death among patients treated at a Department of Medical Oncology in Spain

Introduction. Despite significant advances in the palliative care of cancer patients with terminal disease, a considerable proportion of them still die at hospital. The causes of this fact are multiple including sociocultural, familial, and sanitary reasons. Material and methods. A retrospective study was performed on the place and cause of death among patients treated at a Department of Medical Oncology in two time periods (10/1996–10/1997 and 2001) in order to assess the actual situation and its evolution through the last years. Our department assumes both the active treatment and the palliative care of patients assigned to its area. In 2001, 1,254 new cases were referred and 1,006 hospital admissions were recorded, with a median stay of 11 days. In the same period, 424 patients died. Results. Of them, 250 (59%) deaths occurred at hospital (25% of the department discharges). The most common neoplasms were lung (24%), colorectal (14%), and breast (9%). The median hospital stay was 8 days (range, 1–60). The causes of death were cancer progression (79%), intercurrent diseases (11%), and complications during active treatment (10%). In comparison with the former group, among patients dying at home there was a greater relative percentage of women, diagnoses of breast cancer, lymphoma and multiple neoplasms, elderly patients, and deaths due to tumor progression. Conclusions. Nearly 60% of cancer patients who die in our environment do it at hospital. Of them, 20% do not die specifically of tumor progression. The pattern of deaths at home is somewhat different. Sanitary resources should be adapted to the particular care features of each department, favoring the development and coordination of palliative care units, both hospital-based and home care teams.     

Does palliative care improve outcomes for patients with incurable illness? A review of the evidence

Patients with incurable illness experience considerable physical and psychological distress, which negatively impacts their quality of life. Palliative care clinicians primarily seek to alleviate suffering, enhance coping with symptoms, and enable informed decision making. In this article, we review the efficacy of various palliative care interventions to improve patients' quality of life, physical and psychological symptoms, satisfaction with care, family caregiver outcomes, health-service utilization, and quality of end-of-life care. We have identified 22 randomized studies that evaluate the efficacy of various palliative care interventions. Palliative care research has been hampered by methodological challenges related to attrition and missing data due to progressive illness and death. In addition, interventions to date have varied widely in the focus and extent of services, with only eight studies entailing direct clinical care by palliative care specialists, making comparisons across trials challenging. Despite these limitations, accumulating evidence shows that palliative care interventions do improve patients' quality of life, satisfaction with care, and end-of-life outcomes. Five of seven studies which examined quality of life as a primary outcome reported a statistically significant difference favoring the palliative care intervention. Ten studies examined patient and/or family caregiver satisfaction with care, and seven of these reported greater satisfaction with palliative care intervention. However, data are lacking to support the benefit of palliative interventions for reducing patients' physical and psychological symptoms. We conclude the review by discussing the major obstacles and future directions in evaluating and implementing standardized palliative care interventions.     

Attitudes of medical oncologists toward palliative care for patients with advanced and incurable cancer: report on a survery by the European Society of Medical Oncology Taskforce on Palliative and Supportive Care

BACKGROUND AND METHODS: In part of a quality improvement program, the European Society of Medical Oncology (ESMO) surveyed its membership regarding their involvement in and attitudes toward the palliative care (PC) of patients with advanced cancer. RESULTS: Of 895 members who responded, 82.5% were European and 12.1% were American. Sixty-nine percent of respondents reported that patients with advanced cancer constituted a major proportion of their practice; for 22% of respondents, patients with advanced cancer constituted most of their practice. Only a minority of respondents collaborated often with a PC care specialist (35%), a palliative home care service (38%), an in-patient hospice (26%), or a psychologist (33%). In response to questions regarding specific involvement in PC clinical tasks, respondents were involved more commonly in treating physical symptoms, such as pain (93%), fatigue (84%), and nausea/emesis (84%), than in managing psychological symptoms and end-of-life care issues, such as depression/anxiety (65%), existential distress (29%), or delirium (12%). Forty-three percent of respondents reported that they directly administered end-of-life care often, and 74% reported that they derived satisfaction from their involvement in end-of-life care. Overall, 88.4% of respondents endorsed the belief that medical oncologists should coordinate the end-of-life care for their patients, but a substantial minority (42%) felt that they were trained inadequately for this task. Positive attitudes toward PC were correlated highly with the degree of direct involvement in PC practice. Practitioners in private practice or teaching hospitals had substantially more positive attitudes regarding PC compared with physicians based in comprehensive cancer centers (P < 0.05). Although most of the responding medical oncologists expressed positive views regarding their involvement in the PC of patients with advanced cancer and dying patients, 15% of respondents had pervasively negative views. CONCLUSIONS: Most ESMO oncologists recognize the importance of PC and supportive care for patients with advanced cancer. Despite this, many are prepared inadequately for these tasks, and actual participation levels commonly are suboptimal.