Communication about the ending of anticancer treatment and transition to palliative care.

BACKGROUND: Communication about the ending of anticancer treatment and transition to palliative care is a difficult task for oncologists. The primary aims of this study were to clarify family-reported degree of emotional distress and the necessity for improvement in communication methods when communicating about the ending of anticancer treatment, and to identify factors contributing to the levels of emotional distress and the necessity for improvement. METHODS: A multi-center questionnaire survey was conducted on 630 bereaved family members of cancer patents who received specialized palliative care in Japan. A total of 318 responses were analyzed (effective response rate, 62%). RESULTS: Thirty-nine percent of the bereaved family members reported that they were 'very distressed' in receiving information about the ending of anticancer treatment, and 19% reported 'considerable' or 'much' improvement was necessary in the communication methods. High-level emotional distress was significantly associated with younger patient age, female family gender, the experience of the physician stating she/he could do nothing for the patient, the physician's unwillingness to explore their feelings, and prognostic disclosure of definite survival periods without probabilities or ranges. High levels of perceived necessity for improvement in the communication methods were significantly associated with the experience of the physician stating she/he could do nothing for the patient, physicians not explaining treatment goals in specific terms, physicians not pacing the explanation with the state of family preparation, physicians not being knowledgeable about the most advanced treatments, and the atmosphere not being relaxing enough to ask questions. CONCLUSIONS: In receiving the information about ending anticancer treatment, a considerable number of families experienced high levels of emotional distress and felt a need for improvement of the communication methods. The strategies to alleviate family distress could include: (i) assuring that physicians will do their best to achieve specific goals, without saying that they can do nothing for the patient; (ii) providing information, including estimated prognosis, in careful consideration of families' preparation and the uncertainty for each patient; (iii) exploring families' emotions and providing emotional support; (iv) acquiring knowledge about advanced treatments; and (v) making the atmosphere relaxing enough to allow families to ask questions.     

Preferences regarding end-of-life cancer care and associations with good-death concepts: a population-based survey in Japan.

BACKGROUND: The aims of this study were to clarify end-of-life cancer care preferences and associations with good-death concepts. METHODS: The general population was sampled using a stratified random sampling method (N = 2548; response rate = 51%) and bereaved families from 12 certified palliative care units ('PCU-bereaved families') were surveyed (N = 513; response rate = 70%). The respondents reported their end-of-life care preferences and good-death concepts. RESULTS: Regarding place of end-of-life care, approximately 50% of the general population preferred 'Home', while 73% of PCU-bereaved families preferred 'PCU'. The concepts of 'Maintaining hope and pleasure' and 'Dying in a favorite place' were associated with the preference for 'Home'. Regarding prognostic disclosure, approximately 50% of the participants preferred some level of negotiation with the physician. The concept of 'Control over the future' was associated with this preference. Regarding treatment of severe refractory physical distress, 75% of the general population and 85% of the PCU-bereaved families preferred palliative sedation therapy. The concepts of 'Physical and psychological comfort' and 'Unawareness of death' were associated with this preference. CONCLUSIONS: End-of-life care preferences were associated with good-death concepts. It would be useful for health-care workers to discuss patients' good-death concepts to support subsequent treatment decisions.     

Timing of Palliative Care Referral Before and After Evidence from Trials Supporting Early Palliative Care

BackgroundEvidence from randomized controlled trials has demonstrated benefits in quality of life outcomes from early palliative care concurrent with standard oncology care in patients with advanced cancer. We hypothesized that there would be earlier referral to outpatient palliative care at a comprehensive cancer center following this evidence.Materials and MethodsAdministrative databases were reviewed for two cohorts of patients: the pre‐evidence cohort was seen in outpatient palliative care between June and November 2006, and the post‐evidence cohort was seen between June and November 2015. Timing of referral was categorized, according to time from referral to death, as early (>12 months), intermediate (>6 months to 12 months), and late (≤6 months from referral to death). Univariable and multivariable ordinal logistic regression analyses were used to determine demographic and medical factors associated with timing of referral.ResultsLate referrals decreased from 68.8% pre‐evidence to 44.8% post‐evidence; early referrals increased from 13.4% to 31.1% (p < .0001). The median time from palliative care referral to death increased from 3.5 to 7.0 months (p < .0001); time from diagnosis to referral was also reduced (p < .05). On multivariable regression analysis, earlier referral to palliative care was associated with post‐evidence group (p < .0001), adjusting for shorter time since diagnosis (p < .0001), referral for pain and symptom management (p = .002), and patient sex (p = .04). Late referrals were reduced to <50% in the breast, gynecological, genitourinary, lung, and gastrointestinal tumor sites.ConclusionsFollowing robust evidence from trials supporting early palliative care for patients with advanced cancer, patients were referred substantially earlier to outpatient palliative care.Implications for PracticeFollowing published evidence demonstrating the benefit of early referral to palliative care for patients with advanced cancer, there was a substantial increase in early referrals to outpatient palliative care at a comprehensive cancer center. The increase in early referrals occurred mainly in tumor sites that have been included in trials of early palliative care. These results indicate that oncologists’ referral practices can change if positive consequences of earlier referral are demonstrated. Future research should focus on demonstrating benefits of early palliative care for tumor sites that have tended to be omitted from early palliative care trials.     

Value of religious care for relief of psycho‐existential suffering in Japanese terminally ill cancer patients: the perspective of bereaved family members

Objective: This study aimed to clarify the experience of bereaved family members of cancer patients regarding the usefulness of religious care (perceived usefulness). The value of this care to palliate psycho‐existential suffering in future patients was also examined (predicted usefulness). Methods: A questionnaire was sent to 592 bereaved family members of cancer patients who were admitted to certified palliative care units in Japan. Responses were obtained from 378 families, indicating whether the patient received religious care, the perceived usefulness of the care, and its predicted usefulness for palliation of psycho‐existential suffering. Results: About 25% (N=83) indicated that the patient had received religious care, whereas 75% (N=255) had not received it. Families of patients who had received religious care evaluated pastoral care workers (86%), religious services (82%), and religious music (80%) as ‘very useful’ or ‘useful’. Families predicted usefulness of religious care for future patients: attending a religious service (very useful or useful, 56%; not useful or harmful, 44%), a religious atmosphere (48%, 52%), meeting with a pastoral care worker (50%, 50%), and religious care by physicians (26%, 74%), and nurses (27%, 73%). Families with a religion were significantly more likely to rate religious care as useful for future patients. Conclusions: Families of patients who received religious care generally evaluated this care to be very useful or useful. For future patients, some families felt that religious care would be useful, but some did not. In Japan, religious care is more likely to provide benefits to patients who have a religion. Copyright © 2009 John Wiley & Sons, Ltd.     

Association between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center

Purpose.

Palliative care consultation services are now available in the majority of cancer centers, yet most referrals to palliative care occur late. We previously found that the term “palliative care” was perceived by oncology professionals as a barrier to early patient referral. We aimed to determine whether a service name change to supportive care was associated with earlier referrals.

Patients and Methods.

Records of 4,701 consecutive patients with a first palliative care consultation before (January 2006 to August 2007) and after (January 2008 to August 2009) the name change were analyzed, including demographics and dates of first registration to hospital, advanced cancer diagnosis, palliative care consultation, and death. One-sample proportions tests, median tests, χ² tests, and log-rank tests were used to identify group differences.

Results.

The median age was 59 years, 50% were male, and 90% had solid tumors. After the name change, we found: (a) a 41% greater number of palliative care consultations (1,950 versus 2,751 patients; p < .001), mainly as a result of a rise in inpatient referrals (733 versus 1,451 patients; p < .001), and (b) in the outpatient setting, a shorter duration from hospital registration to palliative care consultation (median, 9.2 months versus 13.2 months; hazard ratio [HR], 0.85; p < .001) and from advanced cancer diagnosis to palliative care consultation (5.2 months versus 6.9 months; HR, 0.82; p < .001), and a longer overall survival duration from palliative care consultation (median 6.2 months versus 4.7 months; HR, 1.21; p < .001).

Conclusion.

The name change to supportive care was associated with more inpatient referrals and earlier referrals in the outpatient setting. The outpatient setting facilitates earlier access to supportive/palliative care and should be established in more centers.     

Relationships between family physicians' referral for palliative radiotherapy, knowledge of radiotherapy, and prior training: a survey of rural and urban family physicians

ABSTRACT: BACKGROUND: The primary objective of this research was to assess the relationship between FPs' knowledge of palliative radiotherapy (RT) and referral for palliative RT METHODS: 1001 surveys were sent to FPs who work in urban, suburban, and rural practices. Respondents were tested on their knowledge of palliative radiotherapy effectiveness and asked to report their self-assessed knowledge. RESULTS: The response rate was 33%. FPs mean score testing their knowledge of palliative radiotherapy effectiveness was 68% (SD=26%). The majority of FPs correctly identified that painful bone metastases (91%), airway obstruction (77%), painful local disease (85%), brain metastases (76%) and spinal cord compression (79%) can be effectively treated with RT, though few were aware that hemoptysis (42%) and hematuria (31%) can be effectively treated. There was a linear relationship between increasing involvement in palliative care and both self-assessed (p<0.001) and tested (p=0.02) knowledge. FPs had higher mean knowledge scores if they received post-MD training in palliative care (12% higher; p<0.001) or radiotherapy (15% higher; p=0.002). There was a strong relationship between FPs referral for palliative radiotherapy and both self-assessed knowledge (p<0.001) and tested knowledge (p=0.01). CONCLUSIONS: Self-assessed and tested knowledge of palliative RT is positively associated with referral for palliative RT. Since palliative RT is underutilized, further research is needed to assess whether family physician educational interventions improve palliative RT referrals. The current study suggests that studies could target family physicians already in practice, with educational interventions focusing on hemostatic and other less commonly known indications for palliative RT.     

Symptom Burden and Palliative Care Needs of Patients with Incurable Cancer at Diagnosis and During the Disease Course

Background

Although current guidelines advocate early integration of palliative care, symptom burden and palliative care needs of patients at diagnosis of incurable cancer and along the disease trajectory are understudied.

Material and Methods

We assessed distress, symptom burden, quality of life, and supportive care needs in patients with newly diagnosed incurable cancer in a prospective longitudinal observational multicenter study. Patients were evaluated using validated self-report measures (National Comprehensive Cancer Network Distress Thermometer [DT], Functional Assessment of Cancer Therapy [FACT], Schedule for the Evaluation of Individual Quality of Life [SEIQoL-Q], Patients Health Questionnaire-4 [PHQ-4], modified Supportive Care Needs Survey [SCNS-SF-34]) at baseline (T0) and at 3 (T1), 6 (T2), and 12 months (T3) follow-up.

Results

From October 2014 to October 2016, 500 patients (219 women, 281 men; mean age 64.2 years) were recruited at 20 study sites in Germany following diagnosis of incurable metastatic, locally advanced, or recurrent lung (217), gastrointestinal (156), head and neck (55), gynecological (57), and skin (15) cancer. Patients reported significant distress (DT score ≥ 5) after diagnosis, which significantly decreased over time (T0: 67.2%, T1: 51.7%, T2: 47.9%, T3: 48.7%). The spectrum of reported symptoms was broad, with considerable variety between and within the cancer groups. Anxiety and depressiveness were most prevalent early in the disease course (T0: 30.8%, T1: 20.1%, T2: 14.7%, T3: 16.9%). The number of patients reporting unmet supportive care needs decreased over time (T0: 71.8 %, T1: 61.6%, T2: 58.1%, T3: 55.3%).

Conclusion

Our study confirms a variable and mostly high symptom burden at the time of diagnosis of incurable cancer, suggesting early screening by using standardized tools and underlining the usefulness of early palliative care.

Implications for Practice

A better understanding of symptom burden and palliative care needs of patients with newly diagnosed incurable cancer may guide clinical practice and help to improve the quality of palliative care services. The results of this study provide important information for establishing palliative care programs and related guidelines. Distress, symptom burden, and the need for support vary and are often high at the time of diagnosis. These findings underscore the need for implementation of symptom screening as well as early palliative care services, starting at the time of diagnosis of incurable cancer and tailored according to patients’ needs.

     

Research sensitivities to palliative care patients

This paper considers the methodological challenges of researching the health care experiences of palliative care patients and their families. Difficulties in defining a 'palliative care patient' are highlighted, and the question of whether there are specific ethical issues when researching palliative care explored. Methodological issues are discussed, including the negotiation of access via health professionals, the choice of appropriate data collection methods and tools, the consequences of high attrition rates and the use of retrospective surveys of bereaved relatives. Key areas for research are identified. These include patients' and families' experiences of research participation, the impact of being approached on those who decline, how the characteristics of those who participate differ from those who do not and the likely impact of this on findings. Research is also needed into patient and family motivations for participation, and whether and how these change as the disease progresses. To ensure that the voices of palliative care patients and their families are heard by both service providers and policy-makers, research in this area needs to address the methodological challenges raised in this paper, as well as continuing to explore users' views.     

Audit in palliative care: does practice change?

This study aimed to document current palliative care initiatives, identify any reported changes in working practice as a result of audit, and determine the opinions of palliative care staff towards audit. All 31 established palliative care services within the former North West Thames Regional Health Authority were sent a brief postal questionnaire on previous and current audit activities. Of the 28 units who responded, most (78%, n =21) were currently involved in audit with a further 7% ( n =2) planning to implement audit in the near future. Changes as a result of audit included implementation of standards, for example response to referrals; improvements in documentation, for example revision of case notes; and changes to unit practice, such as converting to multidisciplinary care plans. The respondents viewed the main advantage of carrying out any audit project as the improvement or maintenance of the quality of patient care. The principal disadvantage expressed was the time-consuming nature of audit. An audit with a clear aim and thorough design can provide valuable evidence upon which new policies or strategies in palliative care can be based. By educating and training staff in audit and illustrating the benefits, any concerns about carrying out audit could be addressed.     

Awareness and use of the Rapid Palliative Radiotherapy Program by family physicians in Eastern Ontario: a survey

The Ottawa Rapid Palliative Radiotherapy Program (RPRP) was established in 1999 with the goal of facilitating access by family physicians to radiotherapy services for patients with advanced symptomatic cancer. Two years later, an audit revealed that of the 148 patients treated by the program, only 19 had been referred by family physicians.We therefore assessed awareness of the RPRP and perceptions of the effectiveness of palliative radiotherapy on the part of family physicians by surveying a random sample of family physicians in Eastern Ontario.Response rate was 50%. Only 18% of family physicians were aware of the RPRP, although 56% had previously referred patients for palliative radiotherapy. Among responders, 80% regularly provided palliative care, and these physicians were much more likely to be aware of and to refer patients for palliative radiotherapy.Our survey confirms the key role that family physicians play in providing care to patients with advanced cancer. However, significant deficits in family physician awareness of palliative radiotherapy programs and in knowledge of the effectiveness of palliative radiotherapy should be addressed to improve patient care.     

Reason why home hospice is not widespread in Japan

A home hospice care program was begun at Fukushima Rousai Hospital in 1987. Nowadays, fifty percent or more of patients who die of cancer use this program, and patients who die in their own homes have reached about 40 percent. Based on our experience, we analyzed the factors in why home hospice care is not widespread in Japan, and pointed out some factors as follows. The main factors are insufficient disclosure of information regarding diagnosis and disease progression, poor palliative care, and incompleteness of the visit medical treatment system. Other factors are doctors' zeal for cure, patients' and/or families' excessive expectation of recovery, insufficient numbers of doctors and nurses with knowledge and skills concerning the home hospice care, doctors' and/or families' conviction that death in the hospital is natural, lack of social systems that support the family, limitations in the use of medicine at insurance drugstores, and the fact that insurance cannot be adjusted for medical treatment in the patients' home.     

Lung cancer physicians’ referral practices for palliative care consultation

BackgroundIntegration of palliative care with standard oncologic care improves quality of life and survival of lung cancer patients. We surveyed physicians to identify factors influencing their decisions for referral to palliative care.MethodsWe provided a self-administered questionnaire to physicians caring for lung cancer patients at five medical centers. The questionnaire asked about practices and views with respect to palliative care referral. We used multiple regression analysis to identify predictors of low referral rates (<25%).ResultsOf 155 physicians who returned survey responses, 75 (48%) reported referring <25% of patients for palliative care consultation. Multivariate analysis, controlling for provider characteristics, found that low referral rates were associated with physicians’ concerns that palliative care referral would alarm patients and families [odds ratio (OR) 0.45, 95% confidence interval (CI) 0.21–0.98], while the belief that palliative care specialists have more time to discuss complex issues (OR 3.07, 95% CI 1.56–6.02) was associated with higher rates of referral.ConclusionsAlthough palliative care consultation is increasingly available and recommended throughout the trajectory of lung cancer, our data indicate it is underutilized. Understanding factors influencing decisions to refer can be used to improve integration of palliative care as part of lung cancer management.     

Referrals to a voluntary sector cancer day care centre: a descriptive study

In the UK, recent guidance on supportive and palliative care has acknowledged the contribution of voluntary organizations, including their role in palliative day care. Similarly, research has tended to focus exclusively on palliative day care as opposed to comparable care for people with cancer, regardless of prognosis. This paper describes a case record review study conducted at a nurse-led voluntary sector cancer day care centre. The study focused on referrals over a one-year period in terms of user demographics, referral sources/reasons and subsequent care given. It was found that 220 referrals (including 106 self-referrals) were made during the year. Of these, 70.9% were people with cancer and the remainder were carers/bereaved people. Those referred broadly reflected national statistics on age, gender and cancer diagnosis. Carers were rarely referred by professionals, few lived in inner-city neighbourhoods and some had no informal support. Non-specific referral reasons, such as 'support', tended to be translated into specific therapies, such as complementary therapies and counselling, at initial assessment. Care offered at the centre appeared to supplement and complement that provided by local statutory services. The study raised issues for practice and further research that may be relevant to those working in similar centres.     

Clinical support for families in the palliative care phase of hematologic or oncologic illness

This article focuses on families' needs for support and care when the patient is receiving palliative care. Health care professionals providing care to patients with hematologic or oncologic illnesses are coming to understand that care for the family must begin at the time of patient's diagnosis and treatment. Families who do not receive adequate information and support in the early phases of the patient's treatment have greater needs, less trust and confidence in the health care system, and cope more poorly in the later stages than families who have been informed and supported throughout the course of the illness. This article documents the needs of families in the palliative phase of a patient's hematologic or oncologic illness and provides empirically based recommendations for assessment and care of the family unit.     

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 detection in patients with cutaneous melanoma

BACKGROUND: Despite the importance of early detection in preventing mortality from melanoma, little is known regarding how patients with the disease come to diagnosis. METHODS: The authors prospectively evaluated 471 newly diagnosed melanoma patients between 1995 and 1998. Patients completed a questionnaire that included 1) identification of the person who detected the lesion, 2) the anatomic location of the lesion, and 3) family history of melanoma. Logistic regression analysis was performed to examine the relation between detection patterns and lesion thickness, adjusting for age, gender, anatomic site of the primary lesion, and family history of melanoma. RESULTS: The majority of patients detected their own melanoma (n = 270; 57%). Females were more likely to self-detect than males (69% vs. 47%; P < 0.0001). Physicians detected the melanoma in 16% of patients (n = 74), followed by "spouse" in 11% of patients (n = 51). Within this group, detection by wives was 7.5 times more common than detection by husbands (P < 0.0001). Logistic regression analysis revealed that physicians were 3.6 times more likely to detect thin lesions (相似文献   

Palliative radiotherapy knowledge among community family physicians and nurses

Background. Primary care physicians and nurses care for patients with advanced cancer and need to be aware of the role for palliative radiotherapy (PR). Methods. We surveyed 250 family physicians, family medicine residents, and nurses attending oncology educational symposia to determine their knowledge of PR. Results. The survey response rate was 59%, and most respondents (77%) were involved with the care of cancer patients. Many (58%) thought that their knowledge of PR was insufficient for their needs. Although bone metastasis and spinal cord compression were frequently recognized indications for PR, only 50% of other assessed indications for PR were correctly identified. Almost all respondents stated that they wanted to learn more about PR. Conclusions. More education regarding PR is required for primary care physicians and nurses caring for cancer patients.     

Toward population-based indicators of quality end-of-life care: testing stakeholder agreement

BACKGROUND: Quality indicators (QIs) are tools designed to measure and improve quality of care. The objective of this study was to assess stakeholder acceptability of QIs of end-of-life (EOL) care that potentially were measurable from population-based administrative health databases. METHODS: After a literature review, the authors identified 19 candidate QIs that potentially were measurable through administrative databases. A modified Delphi methodology, consisting of multidisciplinary panels of cancer care health professionals in Nova Scotia and Ontario, was used to assess agreement on acceptable QIs of EOL care (n = 21 professionals; 2 panels per province). Focus group methodology was used to assess acceptability among patients with metastatic breast cancer (n = 16 patients; 2 groups per province) and bereaved family caregivers of women who had died of metastatic breast cancer (n = 8 caregivers; 1 group per province). All sessions were audiotaped, transcribed verbatim, and audited, and thematic analyses were conducted. RESULTS: Through the Delphi panels, 10 QIs and 2 QI subsections were identified as acceptable indicators of quality EOL care, including those related to pain and symptom management, access to care, palliative care, and emergency room visits. When Delphi panelists did not agree, the principal reasons were patient preferences, variation in local resources, and benchmarking. In the focus groups, patients and family caregivers also highlighted the need to consider preferences and local resources when examining quality EOL care. CONCLUSIONS: The findings of this study should be considered when developing quality monitoring systems. QIs will be most useful when stakeholders perceive them as measuring quality care.