Parcours de soins en fin de vie des patients suivis en soins palliatifs à Strasbourg : étude rétrospective

ObjectivesThe goal of palliative care is to relieve suffering and provide the best possible quality of life for patients and their families. We looked for individual factors related to a poor-quality end-of-life pathway in patients followed in palliative care.MethodsWe included all the patients followed in palliative care in Strasbourg deceased from October to December of 2020. We retrospectively collected data about these patients, their first contact with palliative care, their care pathway, and their death. Multivariate analysis was undertaken.ResultsIn total, 116 patients were included. Seventy-nine of them had cancer. At the end of life, people living in an institution were less likely to be admitted to the emergency department (OR = 0.06), as were non-communicative patients (OR = 0.08). Patients expressing a wish to die at home were less likely to be admitted to and die in an intensive care unit (OR = 0.1). Isolated patients and non-communicative patients appeared protected from aggressive treatment (chemotherapy/immunotherapy, dialysis, orotracheal intubation, cardiopulmonary resuscitation) during the last month of life (OR = 0.1, OR = 0.05).DiscussionOur study suggests a profile of patients less exposed to invasive or unreasonable care at the end of life. It leads us to pay particular attention to young subjects, with family, living at home. In our population followed in palliative care, exposure to aggressive care at the end of life appeared to be very low compared to that observed in similar studies with other populations.     

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.     

整体护理在胃肠道肿瘤患者围手术期腹腔热灌注化疗的作用

目的探讨整体护理在胃肠道肿瘤患者围手术期腹腔热灌注化疗中的作用。方法将实施整体护理的40例经腹腔热灌注化疗的胃肠道肿瘤患者设为观察组,将实施常规护理的40例经腹腔热灌注化疗的胃肠道肿瘤患者设为对照组,比较两组患者满意度、治疗效果和不良反应发生情况。结果观察组患者满意度、治疗效果均好于对照组,不良反应的发生率低于对照组,差异均有统计学意义(P<0.05)。结论对围手术期行腹腔热灌注化疗的胃肠道肿瘤患者进行整体护理,可提高满意度和临床疗效,减少不良反应的发生,从而能提高患者生存质量。     

End of life issues

Despite advances in cancer survival rates, end of life care remains a vital aspect of cancer management. The use of integrated care pathways can facilitate effective care of dying patients in a generalist setting. However, it remains important that staff are able to recognise the onset of the dying process, not only in order to make symptom control provision, but also that appropriate communication can occur with patients and those close to them. This allows the exercise of choice over place and style of care. The key symptoms at the end of life are restlessness, agitation, breathlessness, pain and noisy respiration from retained airway secretions. Ethical tensions arise from the assumptions that the use of opioids and sedatives hastens dying, but this is contradicted by available evidence.     

End-of-life care in Medicare beneficiaries dying with pancreatic cancer

BACKGROUND:

The authors' goal was to characterize hospice enrollment and aggressiveness of care for pancreatic cancer patients at the end of life.

METHODS:

Surveillance, Epidemiology, and End Results and linked Medicare claims data (1992‐2006) were used to identify patients with pancreatic cancer who had died (n = 22,818). The authors evaluated hospice use, hospice enrollment ≥4 weeks before death, and aggressiveness of care as measured by receipt of chemotherapy, acute care hospitalization, and intensive care unit (ICU) admission in the last month of life.

RESULTS:

Overall, 56.9% of patients enrolled in hospice, and 35.9% of hospice users enrolled for 4 weeks or more. Hospice use increased from 36.2% in 1992‐1994 to 67.2% in 2004‐2006 (P < .0001). Admission to the ICU and receipt of chemotherapy in the last month of life increased from 15.5% to 19.6% (P < .0001) and from 8.1% to 16.4% (P < .0001), respectively. Among patients with locoregional disease, those who underwent resection were less likely to enroll in hospice before death and much less likely to enroll early. They were also more likely to receive chemotherapy (14% vs 9%, P < .0001), be admitted to an acute care hospital (61% vs 53%, P < .0001), and be admitted to an ICU (27% vs 15%, P < .0001) in the last month of life.

CONCLUSIONS:

Although hospice use increased over time, there was a simultaneous decrease in early enrollment and increase in aggressive care at the end of life for patients with pancreatic cancer. Cancer 2011;. © 2011 American Cancer Society.     

Perceptions of terminally ill patients and family members regarding home and hospice as places of care at the end of life

To enable demand-based palliative care, it is important to know the perceptions of terminally ill patients and their family members regarding home and hospice as places of care at the end of life. Eight women and five men suffering from cancer and with a life expectancy of 3 months or less were interviewed. In each case one of the family members was also interviewed. Four patients spent their last phase of life at home, nine in a hospice. This paper provides further insight in the patient perspective in palliative care. The results reveal that a cohabiting partner seems an important prerequisite for terminally ill patients to stay at home. For spouses it is an obvious choice to facilitate the patients' stay at home, even when it becomes too demanding, something not discussed between spouse and patient. When sufficient care at home seems impossible and the negotiation between patients and family members results in the opinion that living at home is no longer an option, it is decided that the patient moves to a hospice. The choice for the specific setting of the patients' new residence seems to be random; one possibility is pointed out to them and seems appropriate.     

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.     

Indicators of survival duration in ovarian cancer and implications for aggressiveness of care

BACKGROUND: Ovarian cancer patients frequently receive chemotherapy near the end of life. The purpose of the current study was to develop indicators that characterize those ovarian cancer patients who have a short life span. METHODS: The medical charts of deceased epithelial ovarian cancer patients were retrospectively reviewed from 2000 through 2006. All patients received primary debulking surgery and adjuvant chemotherapy. Aggressiveness of cancer care within the last month of life was measured by chemotherapy regimens, emergency room visits, and hospitalizations. Significant clinical events (SCE) were defined as ascites, bowel obstruction, and pleural effusion. Survival quartiles were compared using chi-square and Student t test statistics. Multiple regression analysis was performed using survival duration as a dependent variable. RESULTS: In all, 113 patients with epithelial ovarian cancer were reviewed. Patients had increased hospitalizations (P < .001) and SCE (P < .001) as they approached the end of life. There was no difference in the pattern of hospitalizations and SCE between the top and bottom survival quartiles. Patients with a shorter survival time had a trend toward increased chemotherapy during their last 3 months of life (P = .057) and had increased overall aggressiveness of care (P = .013). In patients with a disease remission, the length of initial remission time was found to be significant in predicting survival (P < .01). Time to second disease recurrence was also significant in predicting survival time (P < 0.01). CONCLUSIONS: Patients who received aggressive care did not have improvement in survival. Short disease remissions and increasing hospitalizations with SCE should be indicators of the appropriateness of reducing cure-oriented therapies and increasing palliative interventions.     

The importance of quality-of-life management in patients with advanced pancreatic ductal adenocarcinoma

Pancreatic ductal adenocarcinoma (PDAC) carries a poor prognosis, and as such, a focus on quality of life is vital. This review will discuss various aspects of quality of life in patients with PDAC and their treatment. Pancreatic exocrine and endocrine insufficiency may result in issues related to nutrition, and pain and fatigue are other common symptoms, and may be managed with pharmaceutical or nonpharmaceutical methods. It has also been reported that low mood is a particular problem for patients with PDAC compared to patients with other cancers; however, the data supporting this is inconsistent. Data regarding improvements in quality of life in patients with PDAC receiving chemotherapy is also reviewed, which in some cases suggests a benefit to chemotherapy, particularly in the presence of a radiological response. Furthermore, the importance of early palliative care is discussed and the benefits reported including improved quality of life and mood, reduced aggressive interventions at the end of life and improved survival. Areas for future development may include increased use of quality of life as a trial outcome and the use of patient-reported outcomes to improve symptomatic care of patients, and particularly in those receiving active systemic treatment.     

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.     

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.     

Religious faith in coping with terminal cancer: what is the nursing experience?

This qualitative study describes nurses’ reports on the role played by religious faith in the care of patients with terminal cancer. Using Gadamer's philosophical hermeneutics and C. Roy's adaptation model as a base, in‐depth interviews were carried out with 23 nurses who had cared for patients with terminal cancer for at least 6 months. Three main themes emerged when a Gadamerian‐based hermeneutic research method was applied: faith facilitates the coping process in cases of terminal cancer, faith hinders the coping process in cases of terminal cancer and terminal illness impacts faith. The lack of univocal results indicates that the role of faith in coping with death is essentially practical, individualised and changeable. The nurse–patient relationship can help to determine the spiritual needs of cancer patients at the end of life. This source of knowledge held by the nurse, together with the rest of the multidisciplinary team, can help to improve end‐of‐life care.     

Pediatric palliative care in the community

Answer questions and earn CME/CNE Early integration of pediatric palliative care (PPC) for children with life‐threatening conditions and their families enhances the provision of holistic care, addressing psychological, social, spiritual, and physical concerns, without precluding treatment with the goal of cure. PPC involvement ideally extends throughout the illness trajectory to improve continuity of care for patients and families. Although current PPC models focus primarily on the hospital setting, community‐based PPC (CBPPC) programs are increasingly integral to the coordination, continuity, and provision of quality care. In this review, the authors examine the purpose, design, and infrastructure of CBPPC in the United States, highlighting eligibility criteria, optimal referral models to enhance early involvement, and fundamental tenets of CBPPC. This article also appraises the role of CBPPC in promoting family‐centered care. This model strives to enhance shared decision making, facilitate seamless handoffs of care, maintain desired locations of care, and ease the end of life for children who die at home. The effect of legislation on the advent and evolution of CBPPC also is discussed, as is an assessment of the current status of state‐specific CBPPC programs and barriers to implementation of CBPPC. Finally, strategies and resources for designing, implementing, and maintaining quality standards in CBPPC programs are reviewed. CA Cancer J Clin 2015;65:315–333. © 2015 American Cancer Society.     

Spirituality and religion in oncology

Despite the difficulty in clearly defining and measuring spirituality, a growing literature describes its importance in oncology and survivorship. Religious/spiritual beliefs influence patients' decision‐making with respect to both complementary therapies and aggressive care at the end of life. Measures of spirituality and spiritual well‐being correlate with quality of life in cancer patients, cancer survivors, and caregivers. Spiritual needs, reflective of existential concerns in several domains, are a source of significant distress, and care for these needs has been correlated with better psychological and spiritual adjustment as well as with less aggressive care at the end of life. Studies show that while clinicians such as nurses and physicians regard some spiritual care as an appropriate aspect of their role, patients report that they provide it infrequently. Many clinicians report that their religious/spiritual beliefs influence their practice, and practices such as mindfulness have been shown to enhance clinician self‐care and equanimity. Challenges remain in the areas of conceptualizing and measuring spirituality, developing and implementing training for spiritual care, and coordinating and partnering with chaplains and religious communities. CA Cancer J Clin 2013;63:280–289 . ^© 2013 American Cancer Society .     

End of life issues in older patients

Elderly patients with cancer at the end of their life have very unique features associated with their care. As the population of the United States ages, these issues will involve more patients, and end-of-life care has the possibility of consuming more health care costs. With regard to unique care issues, the elderly with cancer at the end of their life are more at risk for untreated pain and depression and are more likely to commit suicide than their younger counter parts. Advance directives are important to discuss with patients and their families so that the patient can designate an individual as the health care proxy and so that discussion around end-of-life care can occur before patients clinically decline so that patients' wishes are known and futile care can be avoided. Hospice care is a Medicare-sponsored program that elderly and nonelderly patients can enter for the last 6 months of their lives. This article discusses barriers to hospice referral.     

Developing quality indicators for cancer end‐of‐life care

Quality indicators applicable to cancer end‐of‐life care exist, but have not been widely implemented. To advance this field, the authors worked with the Agency for Health Care Research and Quality and the National Cancer Institute to organize a national symposium to discuss key issues and future goals, based on a conceptual framework. Discussions focused on 8 key domains in end‐of‐life cancer care: pain; dyspnea; communication, care planning, and decision making; psychosocial care; communication about chemotherapy; depression; continuity, coordination, and care transitions; and spirituality and closure. Key themes included the need for clarity on definitions and key aspects of care within domains, the need to start implementing indicators in more developed domains, and the importance of high‐quality symptom assessment and documentation of key processes. Key areas for future work include development of more outcome indicators, methods to better incorporate indicators and patient‐reported outcomes into clinical processes of care, and coordination across domains and settings. Measuring the quality of end‐of‐life cancer care is essential to understanding how best to improve patient outcomes and care. Cancer 2009. © 2009 American Cancer Society.     

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.     

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.