The oncologist's role in care of the dying cancer patient

Caring for dying patients is challenging for oncologists, but a crucial aspect of cancer care. It requires highly developed communication skills and an understanding of prognostication at the end of life, which can potentially be improved by training and use of appropriate tools. Psychosocial concerns are as important as physical symptoms. Specific strategies for supporting dying patients are evolving, including dignity therapy and other meaning-based therapies. Symptoms affecting dying patients' comfort, including pain, dyspnea, delirium, and terminal secretions, require different clinical management as death approaches. Equally important is the ability to discuss transitions in goals of care from cure to comfort and supporting families and patients to make wise decisions without feeling they have been abandoned. Involving a palliative care team supports both oncologists and patients by providing whole-person assessment and care and excellent symptom control and can offer bereavement services to follow up family members after death.     

Living and dying with metastatic bowel cancer: Serial in‐depth interviews with patients

Colorectal cancer is the second highest cause of cancer deaths. There are significant physical and psycho‐social effects on quality of life with advanced disease. Despite this, there are few accounts of the patient experience from advanced illness through to dying. We elicited the longitudinal experiences of living and dying with incurable metastatic colorectal cancer by conducting serial interviews with patients for 12 months or until they died. The interviews were analysed, using a narrative approach, longitudinally as case studies and then together. Thirty‐six interviews with 16 patients were conducted. Patients experience metastatic colorectal cancer in three phases; (1) Diagnosis and initial treatment; (2) Deterioration and social isolation and (3) Death and dying. Many patients initially said they hoped to survive, but, as “private” and in‐depth accounts of the experience emerged in further interviews, so did the understanding that this hope co‐existed with the knowledge that death was near. Palliative chemotherapy and the challenge of accessing private accounts of patient experience can inhibit care planning and prevent patients benefitting from an active holistic palliative care approach earlier in the disease trajectory. This study has immediate clinical relevance for health care professionals in oncology, palliative care and primary care.     

Quality of end‐of‐life care in low‐income,uninsured men dying of prostate cancer

BACKGROUND:

The quality of end‐of‐life care was assessed in disadvantaged men prospectively enrolled in a public assistance program. That end‐of‐life care would be aggressive, moreso than recommended by quality‐of‐care guidelines, was hypothesized.

METHODS:

Included in the study were all 60 low‐income, uninsured men in a state‐funded public assistance program who had died since its inception in 2001. To measure quality of end‐of‐life care, information was collected regarding timing of the institution of new chemotherapeutic regimens, time from administration of last chemotherapy dose to death, the number of inpatient admissions and intensive care unit stays made in the 3 months preceding death, and the number of emergency room visits made in the 12 months before dying. Also noted were hospice use and the timing of hospice referrals.

RESULTS:

Eighteen men (30%) enrolled in hospice before death and the average hospice stay lasted 45 days (standard deviation, 32; range, 2‐143 days; median, 41 days). Two patients (11%) were enrolled for fewer than 7 days, and none were enrolled for more than 180 days. The average time from administration of the last dose of chemotherapy to death was 104 days. Chemotherapy was never initiated within 3 months of death, and in only 2 instances (6%) was the final chemotherapeutic regimen administered within 2 weeks of dying. Use of hospital resources (emergency room visits, inpatient admissions, and intensive care unit stays) was uniformly low (mean, 1.0 ± 1.0, 0.65 ± 0.82, and 0.03 ± 0.18, respectively).

CONCLUSIONS:

End‐of‐life care in disadvantaged men dying of prostate cancer, who enroll in a comprehensive statewide assistance program, is high‐quality. Cancer 2010. © 2010 American Cancer Society.     

Quality of End-of-Life Care for People with Advanced Non-Small Cell Lung Cancer in Ontario: A Population-Based Study

Ensuring high quality end of life (EOL) care is necessary for people with advanced non-small-cell lung cancer (NSCLC), given its high incidence, mortality and symptom burden. Aggressive EOL care can adversely affect the quality of life of NSCLC patients without providing meaningful oncologic benefit. Objectives: (1) To describe EOL health services quality indicators and timing of palliative care consultation provided to patients dying of NSCLC. (2) To examine associations between aggressive and supportive care and patient, disease and treatment characteristics. Methods: This retrospective population-based cohort study describes those who died of NSCLC in Ontario, Canada from 2009–2017. Socio-demographic, patient, disease and treatment characteristics as well as EOL health service quality and use of palliative care consultation were investigated. Multivariable logistic regression models examined factors associated with receiving aggressive or supportive care. Results: Aggressive care quality indicators were present in 50.3% and supportive care indicators in 60.3% of the cohort (N = 37,203). Aggressive care indicators decreased between 2009 and 2017 (57.4% to 45.3%) and increased for supportive care (54.2% to 67.5%). Benchmarks were not met by 2017 in 3 of 4 cases. Male sex and greater comorbidity were associated with more aggressive EOL care and less supportive care. Older age was negatively associated and rurality positively associated with aggressive care. No palliative care consultation occurred in 56.0%. Conclusions: While improvements in the use of supportive rather than aggressive care were noted, established Canadian benchmarks were not met. Moreover, there is variation in EOL quality between groups and use of earlier palliative care must improve.     

Making Difficult Discussions Easier: Using Prognosis to Facilitate Transitions to Hospice

Patients with advanced cancer face difficult decisions regarding their treatment, and many will need to make difficult choices about end‐of‐life care because although cancer‐directed therapies are increasingly available, few provide a cure. High‐quality cancer care includes access to palliative care throughout the cancer care continuum, and increasing evidence suggests that timely enrollment in hospice can increase quality of life for patients dying from cancer. Therefore, clinicians must learn to recognize patients who are hospice‐eligible and to develop prognostication and communication skills that enable honest provider‐patient dialogue about end‐of‐life options. In this article, the authors review available tools for prognostication in advanced cancer and present a method for discussing prognosis by using the SPIKES acronym. In addition, by using patient‐identified goals and service needs, the authors recommend a method for making a hospice referral after disclosure of poor prognosis. CA Cancer J Clin 2009;59:250‐263. ? 2009 American Cancer Society, Inc.     

Chemotherapy and healthcare utilisation near the end of life in patients with cancer

The quality of medical care delivered to patients with cancer near the end of life is a significant issue. Previous studies have defined several areas suggestive of aggressive cancer treatment as potentially representing poor quality care. The primary objective of current analysis was to examine chemotherapy and healthcare utilisation in the last 3 months of life among patients with cancer that received palliative chemotherapy. Patients were selected from the hospital administration database of the Diakonessenhuis Utrecht, the Netherlands. Data were extracted from the medical files. A total of 604 patients were included for analysis (median age: 64 years). For 300 patients (50%) chemotherapy was given in the last 3 months (CT+). For 76% (n = 229) of CT+ patients unplanned hospital admissions were made in these last 3 months, compared to 44% (n = 133) of CT? patients (p < .001). Visits to the emergency room in last 3 months were made by 67% (n = 202) of CT+ patients compared to 43% (n = 132) of CT? patients (p < .001). Healthcare consumption was significantly higher in patients who received chemotherapy in the last 3 months of life. Being able to inform our patients about these aspects of treatment can help to optimise both the quality of life and the quality of dying in patients with cancer.     

Good Quality Care for Cancer Patients Dying in Hospitals,but Information Needs Unmet: Bereaved Relatives’ Survey within Seven Countries

BackgroundRecognized disparities in quality of end‐of‐life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries.Materials and MethodsA postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i‐CODE) questionnaire 6–8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient''s last days of life.ResultsOf 1,683 potential participants, 914 i‐CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their family member with dignity and respect “always” or “most of the time”; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3–17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase.ConclusionThis is the first study assessing quality of care for dying cancer patients from the bereaved relatives’ perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: {"type":"clinical-trial","attrs":{"text":"NCT03566732","term_id":"NCT03566732"}}NCT03566732).Implications for PracticePrevious studies have shown that bereaved relatives’ views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement.     

Time spent in hospital in the last six months of life in patients who died of cancer in Ontario.

PURPOSE: To describe hospital bed utilization in the final 6 months of life in patients dying of cancer in Ontario, Canada. PATIENTS AND METHODS: Hospital separation records were linked to a population-based cancer registry to identify factors associated with hospitalization in the 203,713 patients who died of cancer in Ontario between 1986 and 1998. RESULTS: Between 1986 and 1998, 5.3% of all acute care beds in Ontario were devoted to the care of cancer patients in the last 6 months of life. The mean time spent in hospital in the last 6 months of life decreased from 34.3 days in 1986 to 22.7 days in 1998. Hospitalization rates increased exponentially during the last month of life. Patients younger than 50 years of age, women, and residents of poorer communities spent significantly longer in hospital than others. Hospitalization rates differed very little among the common solid tumors, but patients with CNS malignancies, the lymphomas, and the leukemias spent significantly longer in hospital than the other groups. There was significant interregional variations in hospitalization that were not explained by differences in case mix. There was a statistically significant inverse correlation between the rate of use of palliative radiotherapy and the hospital bed use in the county in which the patient resided. CONCLUSION: The total time spent in hospital in the last 6 months of life has decreased over the last decade, but acute care hospitals continue to play a large role in the care of patients who are dying of cancer.     

End of life issues in brain tumor patients

Despite aggressive antitumor treatment, the prognosis of brain tumor (BT) patients remains poor. In the last stage of disease, BT patients present severe symptoms due to the growing tumor or to treatment side-effects, which require adequate palliative management and supportive therapy. However, studies specifically addressing palliative care and end-of-life (EoL) issues in BT patients are lacking. This study explores symptoms experienced by BT patients in the last weeks of disease and EoL issues observed in a population of brain tumor patients followed at home until death by a neuro-oncological home care palliative unit set up in our Institution in 2000. From October 2000 to December 2005, 324 patients affected by brain tumor and discharged from our Institution were enrolled in a comprehensive program of neuro-oncological home care supported by the Regional Health System. Out of 324 patients enrolled in the home care program, 260 patients died of which 169 (65%) were assisted at home until the end of life and have been included in this study. Clinical symptoms, palliative treatments and EoL treatment decisions were collected from home clinical records. Among the 169 patients assisted at home until death, the most frequent symptoms observed in the last four weeks of life were: epilepsy 30%, headache 36%, drowsiness 85%, dysphagia 85%, death rattle 12%, agitation and delirium 15%. Palliative management of brain tumor patients requires a multidisciplinary approach performed by a well trained neuro-oncology team. Development of home care models of assistance may represent an alternative to in-hospital care for the management of patients dying of brain tumor and may improve the quality of end-of-life care. An erratum to this article can be found at     

From evidence to implementation: The global challenge for psychosocial oncology

The human dimensions of medical care were highlighted by such pioneering figures as Cicely Saunders, Elizabeth Kubler‐Ross, and Jimmie Holland and their tireless advocacy helped to build an evidence base for psychosocial and palliative interventions. In that spirit, we studied physical and psychological distress in advanced cancer and modeled pathways to distress in this population. We considered acute stress disorder as the prototype for psychological disturbances following the acute onset of life‐threatening disorders, showing that it occurred in one‐third of patients after the diagnosis of acute leukemia. To treat and prevent these symptoms, we developed Emotion and Symptom‐focused Engagement (EASE), an integrated psychotherapeutic and early palliative intervention. We showed that EASE reduced both traumatic stress and physical suffering in these patients and a large multi‐center trial is now underway. We also identified symptoms of depression and hopelessness n one quarter of patients with metastatic and advanced cancer, with worsening toward the end of life. To alleviate this distress, we developed a brief supportive‐expressive therapy, referred to as Managing Cancer and Living Meaningfully (CALM). We showed in a large RCT that CALM improves depression, distress related to dying and death, and preparation for the end of life. We have now launched a global initiative involving 20 sites to date across North and South America, Europe, Australia, and Asia to have CALM implemented routinely in cancer care. Such initiatives are needed to move psychosocial care in cancer from evidence to implementation and to fulfill the dream of Jimmie Holland that cancer care be as humanistic as it is effective.     

Palliative uses of methylphenidate in patients with cancer: a review.

PURPOSE: Cancer is, unfortunately, often a terminal disease. The goal of therapy for many patients with cancer is palliation of symptoms common at the end of life, including pain, depression, and cognitive dysfunction. Methylphenidate is a psychostimulant most commonly used in the treatment of attention deficit hyperactivity disorder. In this report, we review the use of methylphenidate in the palliative care of patients with cancer. METHODS: This review was written on the basis of a computerized literature search of Medline. We considered all English language publications from 1966 to present using the following key words: methylphenidate, palliative care, and cancer. Forty-nine articles were identified as being relevant for this review. RESULTS: On the basis of this review, we came to the conclusion that methylphenidate is used to ameliorate opioid-induced somnolence, to augment the analgesic effects of opioids, to treat depression, and to improve cognitive function in patients with cancer. CONCLUSION: The medical literature supports the palliative use of methylphenidate in the care of patients with cancer. Further placebo-controlled trials are needed to elucidate the precise role that methylphenidate will have in providing symptom relief to dying patients.     

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.     

Patient awareness of prognosis, patient-family caregiver congruence on the preferred place of death, and caregiving burden of families contribute to the quality of life for terminally ill cancer patients in Taiwan

Objectives: The main goal of end‐of‐life care is to achieve the best quality of life (QOL) for patients. The purpose of this study was to investigate the impact of (1) the patients' awareness of their prognosis, (2) the extent of patient–family caregiver congruence on the preferences for end‐of‐life care options, and (3) the perceived caregiving burden of family caregivers when they provide end‐of‐life care to their dying relative, on the QOL for terminally ill cancer patients in Taiwan. Methods: A total of 1108 dyads of patient–family caregiver from 24 hospitals throughout Taiwan were one‐time surveyed. Predictors of the QOL were identified by multiple regression analysis. Results: Controlling for the effects of age, financial status, and symptom distress, a novel finding of this study was that the patient awareness of prognosis, patient–family caregiver congruence on the preferred place of death, and the subjective family caregiving burden had a significant impact on the QOL of Taiwanese terminally ill cancer patients. Conclusions: QOL is not only related to the unavoidable decline in physical condition and daily functioning of the dying patient but is also related to domains that, as death approaches, have the potential to show improvement through the efforts of health‐care professionals, such as presenting prognostic information to optimize the patients' understanding and assists them with psychological adjustments, facilitating patient–family caregiver congruence on the end‐of‐life care decision regarding the place of death and lightening the caregiving burden of family caregivers. Copyright © 2008 John Wiley & Sons, Ltd.     

医院内癌症患者死亡观调查

目的 调查医院内癌症患者的死亡观及其影响因素。方法 采用自行设计的调查问卷对癌症患者进行调查。结果 发放问卷100份,回收有效问卷99份,其中介意谈论死亡相关问题的患者占27.27％。患者是否介意谈论死亡问题与其文化程度（P=0.005）、居住环境（P=0.009）、接触垂危或濒死情况（P=0.001）、接触死亡情况（P=0.003）、是否有目睹家庭成员在临终期的经历（P=0.042）及参加葬礼时的感觉（P=0.001）等有关。不介意谈论死亡的患者中,超过半数认为死亡应顺其自然;选择对临终者“尽可能抢救”和“依病情而定”的比例相近（44.44％ vs. 50.00％）;面对死亡最关心的问题是“对家庭的责任未完”（63.89％）和“亲友会哀伤”（11.11％）;2／3的患者偏好死亡地点在家中,仅有18.06％的患者选择在医院。结论 实施姑息治疗和临终关怀,并提高癌症患者的生活质量具有重要意义。     

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.     

Symptom management in gynecologic malignancies

Patients with gynecologic cancer experience significant symptom burden throughout their disease course and treatment, which negatively impacts their quality of life. The most common symptoms in gynecologic cancer include pain, fatigue, depression and anxiety. Palliative care, including symptom management, focuses on the prevention and relief of suffering and improvement in quality of life, irrespective of prognosis. In a comprehensive cancer care model, palliative care, including symptom management, is offered concurrently with anticancer therapies throughout the disease course, not just at the end of life and not only once curative attempts have been abandoned. Good symptom management begins with routine symptom assessment and use of a standardized screening tool can help identify patients with high symptom burden. Literature regarding epidemiology, assessment and management of pain, fatigue, nausea/vomiting, lymphedema, ascites, depression, anxiety and sexual dysfunction in gynecologic oncology patients will be reviewed in this article.     

Insights into hospitalisation of advanced cancer patients: a study of medical records

The aim of this study was to explore reasons for the hospitalisation and place of death outcomes of terminal cancer patients. The methodology involved a qualitative content analysis of medical records pertaining to the last 3 months of life of 39 patients with one of four malignancies: prostate, breast, lung, or haematological. The results presentation is organised around three themes: decision hierarchy in health care, meanings of ‘home’, and late recognition of dying. Based on the detailed findings, this paper suggests that important insights into the broader goals of advanced cancer patients are offered by allied health staff, and that more effective use of the multidisciplinary team may support endeavours to achieve more home deaths for cancer patients who want this outcome. The analysis also provides new insights into the meaning of ‘home’ in interactions between advanced cancer patients and health professionals. The wish for ‘home’ appears bound up with other patient goals and the implications of this are discussed.     

Days spent in acute care hospitals at the end of life of cancer patients in four Swiss cantons: a retrospective database study (SAKK 89/09)

Number of days spent in acute hospitals (DAH) at the end of life is regarded as an important care quality indicator for cancer patients. We analysed DAH during 90 days prior to death in patients from four Swiss cantons. Claims data from an insurance provider with about 20% market share and patient record review identified 2086 patients as dying of cancer. We calculated total DAH per patient. Multivariable generalised linear modelling served to evaluate potential explanatory variables. Mean DAH was 26 days. In the multivariable model, using complementary and alternative medicine (DAH = 33.9; +8.8 days compared to non‐users) and canton of residence (for patient receiving anti‐cancer therapy, Zürich DAH = 22.8 versus Basel DAH = 31.4; for other patients, Valais DAH = 22.7 versus Ticino DAH = 33.7) had the strongest influence. Age at death and days spent in other institutions were additional significant predictors. DAH during the last 90 days of life of cancer patients from four Swiss cantons is high compared to most other countries. Several factors influence DAH. Resulting differences are likely to have financial impact, as DAH is a major cost driver for end‐of‐life care. Whether they are supply‐ or demand‐driven and whether patients would prefer fewer days in hospital remains to be established.     

Opioid use in dying patients in hospice and hospital, with and without specialist palliative care team involvement

Newspapers claim that patients in hospices have their opioid doses increased to a point at which doctors know that they will die. However, research has produced conflicting results about whether hospice patients receive higher doses of opioids. This study investigated the differences in opioid prescribing between cancer patients dying in hospice and hospital with and without hospital palliative care team (HPCT) involvement and non-cancer patients dying in hospital, in Dundee, UK. The only statistically significant difference in the mean dose of opioids was that the cancer patients were prescribed and received higher doses of opioids than non-cancer patients. There was no statistically significant difference in the mean dose of opioids prescribed to and given to the different groups of cancer patients dying in different settings, indicating that the claims of the press are untrue. The cancer patients dying in hospital who were not on the HPCT records more commonly received Tramadol, which may indicate a reluctance of hospital doctors to move from weak opioids to strong opioids.     

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.