Psychosocial intervention in palliative care: What do psychologists need to know.

Emotional and existential suffering is prevalent in advanced diseases and psychologists have valuable skills to support people in this time of life. Yet, psychologists are rarely integrated in palliative care and relevant training is sparse. Being integrated in other areas of health, it is likely that we will be supporting these patients, whether integrated in a specialized team or not. This article is meant to serve psychologists, already skilled in the art and science of psychosocial intervention, who may find themselves supporting patients with advanced disease. Relevant history of palliative care is provided to elucidate palliative philosophy and approach. Evidence-based existential interventions will be reviewed. Integration of psychological models and both palliative theory and practice is provided to support palliative-appropriate case conceptualizations. Finally, case examples are provided throughout to help readers reconcile their existing practice in this domain of care.

Tertiary Inpatient Palliative Care within Region-Wide Services: A Retrospective Examination of Psychosocial and Medical Demographics at Admissions.

Palliative care offers symptom relief and improved quality of life. Tertiary palliative care units (TPCUs) focus on complex suffering under the care of specialist palliative physicians and interdisciplinary teams. The Intensive Palliative Care Unit (IPCU) is a TPCU integrated in well-developed region-wide palliative services in Calgary, Canada. We compared the population accessing the IPCU to published data from other Canadian sites. METHODS: A retrospective chart review was conducted using 8 sample months over a 2-year period. We gleaned psychosocial and medical demographics alongside the self-reported symptom burden on the Edmonton Symptom Assessment System. Descriptive statistics were calculated. RESULTS: Adults (n = 117) with cancer admitted to the IPCU were 5-10 years younger, had later-stage cancer, and had higher discharges to preferred locations than other published Canadian TPCUs. Up to two months before admission, most commonly reported symptoms were consistent with the outpatient literature although with higher reported intensity. DISCUSSION: With more advanced disease, younger age, and elevated symptom burden before admission, the IPCU still discharged patients to preferred locations at higher rates than other sites. This may be due to integration in the region's organized palliative care services. CONCLUSION: With proper integration, a TPCU may be able to improve quality of life and reduce deaths in hospitals.

Assessing and Preparing Patients for Hematopoietic Stem Cell Transplant in Canada: An Environmental Scan of Psychosocial Care.

Recipients and caregivers of Hematopoietic Stem Cell Transplant (HCT) have extensive physical and psychosocial needs. HCT programs recognize the need to support psychosocial wellbeing. However, evidence-based guidance for pre-HCT psychosocial services is sparse. We conducted a qualitative environmental scan of programs across Canada to better understand how programs evaluate and support patients and caregivers prior to HCT. METHODS: HCT programs across Canada were contacted with a list of questions about their psychosocial assessment and preparation process with patients and caregivers. They could respond via email or participate in an interview over the phone. Descriptive qualitative content analysis was conducted, using steps outlined by Vaismoradi and colleagues (2013). RESULTS: Most participants were social workers from hospitals (64%). Four qualitative themes arose: (a) Psychosocial Team Composition. Psychosocial assessment for HCT patients was often provided by social workers, with limited availability of psychologists and psychiatrists. (b) Criteria for assessing select HCT patients. Participants prioritized psychosocial assessments for patients with higher perceived psychosocial needs or risk, and/or according to transplant type. Limited time and high psychosocial staff demands also played into decision-making. (c) Components and Practices of Pre-HCT Psychosocial Assessment. Common components and differences of assessments were identified, as well as a lack of standardized tools. (d) Patient Education Sessions. Many sites provided adjunct patient education sessions, of varying depth. CONCLUSION: Significant variation exists in the way programs across the country assess their patients' psychosocial pre-transplant needs and assist in preparing patients for the psychosocial aspects of HCT. This environmental scan identified several strategies used in diverse ways. Further in-depth research on program outcomes across Canada could help to identify which strategies are the most successful.

Program Evaluation of a Class Addressing Psychosocial Topics in Preparation for Hematopoietic Cell Transplantation: a Brief Report.

Patients undergoing hematopoietic cell transplantation (HCT) and their caregivers can experience psychosocial complications pre-, during, and post-transplant. To meet the needs of the most patients and caregivers, a class was developed to prepare patients and caregivers to prevent and manage common psychosocial challenges. We evaluated the feasibility and acceptability of the class over a 5-month pilot period. Attendance in this class became part of standard pre-transplant care. Attendees were invited to complete a questionnaire (Likert-scale and open-ended questions) to evaluate the feasibility and acceptability of this class. Data were collected over a 5-month period. Descriptive analysis was completed. Patients (n = 41) and caregivers (n = 40) were satisfied to very satisfied with the class. Patients (80%) and caregivers (65%) reported that the class met their expectations, with several describing it as worthwhile and informative. Information relating to finances and benefits were considered most helpful, followed by emotional support resources. Patients (73%) and caregivers (93%) reported that they would recommend the class to others. This education class should be provided as early as possible to ensure that psychosocial needs are addressed. Future research initiatives include further assessing the perspectives of patients, clinicians, and other stakeholders; evaluating delivery methods; and collaborating with other centers.

Responding to requests for hastened death in patients living with advanced neurologic disease.

A request for hastened death can mean many things, from an emotional plea for help with unmet needs to a request for legal provision of chemically induced hastened death. Regardless of whether the clinician supports legally available hastened death, knowing how to respond to requests for hastened death is important. Responding in an empathic and open manner will strengthen the therapeutic relationship between the patient and clinician. Suggested scripts on how to respond are provided. A framework for assessing the patient's preparation at various stages in the decisional journey is suggested. Additional factors including caring for the family and involving other healthcare providers are discussed. Last, there is some exploration of ethics considerations and a summary of legal chemically induced hastened death availability internationally.

Reflecting on Palliative Care Integration in Canada: A Qualitative Report.

Studies have identified integrated interdisciplinary care as a hallmark of effective palliative care. Although models attempt to show how integration may function, there is little literature available that practically explores how integration is fostered and maintained. In this study we asked palliative care clinicians across Canada to comment on how services are integrated across the healthcare system. This is an analysis of qualitative data from a larger study, wherein clinicians provided written responses regarding their experiences. Content analysis was used to identify response categories. Clinicians (n = 14) included physicians, a nurse and a social worker from six provinces. They identified the benefits of formalized relationships and collaboration pathways with other services to streamline referral and consultation. Clinicians perceived a need for better training of residents and primary care physicians in the community and more acceptance, shared understanding, and referrals. Clinicians also described integrating well with oncology departments. Lastly, clinicians considered integration a complex process with departmental, provincial, and national involvement. The needs and strengths identified by the clinicians mirror the qualities of successfully integrated palliative care programs globally and highlight specific areas in policy, education, practice, and research that could benefit those in Canada.

Missing in Action: Reports of Interdisciplinary Integration in Canadian Palliative Care.

Palliative care has an interdisciplinary tradition and Canada is a leader in its research and practice. Yet even in Canada, a full interdisciplinary complement is often lacking, with psychosocial presence ranging from 0-67.4% depending on the discipline and region. We sought to examine the most notable gaps in care from the perspective of Canadian palliative professionals. Canadian directors of palliative care programs were surveyed with respect to interdisciplinary integration. Participants responded in writing or by phone interview. We operationalized reports of interdisciplinary professions as either "present" or "under/not-represented". The Vaismoradi, Turunen, and Bondas' procedure was used for content analysis. Our 14 participants consisted of physicians (85.7%), nurses (14.3%), and a social worker (7.1%) from Ontario (35.7%), British Columbia (14.3%), Alberta (14.3%), Quebec (14.3%), Nova Scotia (14.3%), and New Brunswick (7.1%). Psychology and social work were equally and most frequently reported as "under/not represented" (5/14, each). All participants reported the presence of medical professionals (physicians and nurses) and these groups were not reported as under/not represented. Spiritual care and others (e.g., rehabilitation and volunteers) were infrequently reported as "under/not represented". Qualitative themes included Commonly Represented Disciplines, Quality of Multidisciplinary Collaboration, Commonly Under-Represented Disciplines, and Special Concern: Psychosocial Care. Similar to previous reports, we found that (1) psychology was under-represented yet highly valued and (2) despite social work's relative high presence in care, our participants reported a higher need for more. These finding highlight those psychosocial gaps in care are most frequently noted by palliative care professionals, especially psychology and social work. We speculate on barriers and enablers to addressing this need.

Outcomes From a Patient-Centered, Interprofessional, Palliative Consult Team in Oncology.

Background: Palliative care aims to improve suffering and quality of life for patients with life-limiting disease. This study evaluated an interdisciplinary palliative consultation team for outpatients with advanced cancer at the Tom Baker Cancer Centre. This team traditionally offered palliative medicine and recently integrated a specialized psychosocial clinician. Historic patient-reported clinical outcomes were reviewed. There were no a priori hypotheses. Methods: A total of 180 chart reviews were performed in 8 sample months in 2015 and 2016; 114 patients were included. All patients were referred for management of complex cancer symptomatology by oncology or palliative care clinicians. Patients attended initial interviews in person; palliative medicine follow-ups were largely performed by telephone, and psychosocial appointments were conducted in person for those who were interested and had psychosocial concerns. Chart review included collection of demographics, medical information, and screening for distress measures at referral, initial consult, and discharge. Results: A total of 51% of the patient sample were men, 81% were living with a partner, and 87% had an advanced cancer diagnosis. Patients were grouped based on high, moderate, or low scores for 5 symptoms (pain, fatigue, depression, anxiety, and well-being). High scores on all 5 symptoms decreased from referral to discharge. Pain and anxiety decreased in the moderate group. All 5 low scores increased significantly. Sleep, frustration/anger, sense of burdening others, and sensitivity to cold were less frequently endorsed by discharge. Conclusions: Patients who completed this interdisciplinary palliative consult service appeared to experience a reduction in their most severe symptoms. Visits to patients during existing appointments or having them attend a half-day clinic appears to have reached those referred. With interdisciplinary integration, clinicians are able to collaborate to address patient care needs. Considerations include how to further integrate palliative and psychosocial care to achieve additional benefits and ongoing monitoring of changes in symptom burden.

Exploring the screening capacity of the Fear of Cancer Recurrence Inventory-Short Form for clinical levels of fear of cancer recurrence.

OBJECTIVE: Fear of cancer recurrence (FCR) is a common concern among cancer survivors. Identifying survivors with clinically significant FCR requires validated screening measures and clinical cut-offs. We evaluated the Fear of Cancer Recurrence Inventory-Short Form (FCRI-SF) clinical cut-off in 2 samples. METHODS: Level of FCR in study 1 participants (from an Australian randomized controlled trial: ConquerFear) was compared with FCRI-SF scores. Based on a biopsychosocial interview, clinicians rated participants as having nonclinical, subclinical, or clinical FCR. Study 2 participants (from a Canadian FCRI-English validation study) were classified as having clinical or nonclinical FCR by using the semistructured clinical interview for FCR (SIFCR). Receiver operating characteristic analyses evaluated the screening ability of the FCRI-SF against clinician ratings (study 1) and the SIFCR (study 2). RESULTS: In study 1, 167 cancer survivors (mean age: 53 years, SD = 10.1) participated. Clinicians rated 43% as having clinical FCR. In study 2, 40 cancer survivors (mean age: 68 years, SD = 7.0) participated; 25% met criteria for clinical FCR according to the SIFCR. For both studies 1 and 2, receiver operating characteristic analyses suggested a cut-off ≥22 on the FCRI-SF identified cancer survivors with clinical levels of FCR with adequate sensitivity and specificity. CONCLUSIONS: Establishing clinical cut-offs on FCR screening measures is crucial to tailoring individual care and conducting rigorous research. Our results suggest using a higher cut-off on the FCRI-SF than previously reported to identify clinically significant FCR. Continued evaluation and validation of the FCRI-SF cut-off is required across diverse cancer populations.

Reported distress in patients living with advanced cancer: changes pre-post interdisciplinary palliative rehabilitation.

PURPOSE: Patients are living extended life with advanced cancer making it chronic rather than imminently terminal. Literature on the experience of living with advanced cancer is emerging, indicating ongoing polysymptomatic burden, lack of information, burnout (patients and caregivers), and emotional concerns, all of which contribute to emotional distress. The interdisciplinary Ottawa Palliative Rehabilitation Program (PRP) offers a scarce clinical resource for this population. The current research aimed to explore changes in self-reported distress for patients who completed the PRP, from baseline to program completion. METHODS: A secondary analysis of self-report and clinical measures was performed for 180 patients who completed the PRP. Measures included the Distress Thermometer and the Problem checklists. Descriptive statistics described the sample, paired-sample t tests examined changes in Distress Thermometer scores from baseline to PRP completion, and McNemar's tests revealed whether the most commonly endorsed checklist items changed by PRP completion. RESULTS: Participants (n = 180) had advanced heterogeneous cancers (mean age = 62.18, 49.4% male). From baseline to completion, significant reported changes included decreases in endorsement of clinical distress (from 55.6 to 38.9%; p < 0.001) and decreases in 7/10 of the most commonly endorsed checklist problems (p values ranging from 0.016 to <0.001). CONCLUSIONS: A number of endorsed checklist problems significantly decreased, as did overall self-reported distress. Compared to the existing literature that does not show improvements, our finding begins to support that palliative rehabilitation may benefit patient levels of distress by improving function and quality of life. Psychotherapy, anesthesia, and additional intervention for cognitive difficulties may further benefit patients.

The longitudinal course of depression symptomatology following a palliative rehabilitation program.

PURPOSE: Patients with advanced cancer have increased life expectancy but suffer from ongoing burden. Depressive symptomatology is their most common mental health concern. The Ottawa Palliative Rehabilitation Program (PRP) offers rehabilitation for this population. It offers 8 weeks of individualized interdisciplinary rehabilitation, post cancer treatment. Interventions include medical (physician and nurse), physiotherapy, occupational therapy, dietary, and social work using a general self-efficacy framework. Pilot data suggest benefits in a range of domains, including ratings of feeling "depressed." We examined whether reduced symptomatology was maintained 3 months after PRP completion. METHODS: Participants with advanced heterogeneous cancers who completed the PRP were mailed the Hospital Anxiety and Depression Scale (among others) 3-month post-PRP (n = 44). Demographic and medical information were obtained from patient files. RESULTS: There was a significant linear trend (mean T1: 6.79 ± 2.29; T2: 5.23 ± 3.06; T3: 4.59 ± 3.34; p = 0.007) with statistically and clinically significant decreases in reported depressive symptomatology between T1 and T2 (p = 0.042) and T1 and T3 (p = 0.007). There was a significant decreases in number of cases reporting symptomatology scores in the clinical range from T1 to T3 (p = 0.038). CONCLUSION: Patients who undergo a palliative rehabilitation program may experience relief of mild depressive symptomatology, maintainable 3-month post-PRP. The sample was exhibiting mild symptomatology and these results may not be generalizable to those with higher scores; a lack of specialized psychosocial clinician may have affected the acquired sample. Experimental designs are needed to more thoroughly compare these findings to independent rehabilitation interventions.

Empirical validation of the English version of the Fear of Cancer Recurrence Inventory.

PURPOSE: Cancer patients report that help in managing fear of cancer recurrence (FCR) is one of their greatest unmet needs. Research on FCR has been limited by the very few validated, multi-dimensional measures of this construct. One exception is the Fear of Cancer Recurrence Inventory (FCRI), originally developed and empirically validated in French. The present study validated the English version of the FCRI. METHODS: The FCRI was translated into English using a forward-backward translation procedure and pilot-tested with 17 English-speaking cancer patients. Cross-cultural equivalency of the French and English versions was established by administering both forms to 42 bilingual cancer patients. Last, 350 English-speaking breast, colon, prostate, or lung cancer patients were asked to complete the FCRI. A subsample (n = 135) was mailed the FCRI again one month later to evaluate test-retest reliability. RESULTS: The English translation of the FCRI was well accepted by participants. There was no item-bias when comparing bilingual participants' answers on both versions. A confirmatory factor analysis supported the hypothesized seven-factor structure. The English version has high internal consistency (α = .96 for the total scale and .71-.94 for the subscales) and test-retest reliability (r = .88 for the total scale and 56-.87 for the subscales). CONCLUSIONS: The English version of the FCRI is a reliable and valid measure of FCR applicable to breast, colon, prostate, and lung cancer patients. Its multi-dimensional nature makes it an attractive research and clinical tool to further our knowledge of FCR.

Do behavioural self-blame and stigma predict positive health changes in survivors of lung or head and neck cancers?

UNLABELLED: Survivors of lung or head and neck cancers often change tobacco and alcohol consumption after diagnosis, but few studies have examined other positive health changes (PHCs) or their determinants in these groups. The present study aims to: (a) document PHCs in survivors of lung (n = 107) or head and neck cancers (n = 99) and (b) examine behavioural self-blame and stigma as determinants of PHCs. We hypothesised that: (a) survivors would make a variety of PHCs; (b) behavioural self-blame for the disease would positively predict making PHCs; and (c) stigma would negatively predict making PHCs. METHODS: Respondents self-administered measures of PHC, behavioural self-blame, and stigma. Hierarchical multiple regression analysis tested the hypotheses. RESULTS: More than 65% of respondents reported making PHCs, the most common being changes in diet (25%), exercise (23%) and tobacco consumption (16.5%). Behavioural self-blame significantly predicted PHCs but stigma did not. However, both behavioural self-blame and stigma significantly predicted changes in tobacco consumption. CONCLUSIONS: Many survivors of lung or head and neck cancers engage in PHCs, but those who do not attribute the disease to their behaviour are less likely to do so. Attention to this problem and additional counselling may help people to adopt PHCs.

Does fear of cancer recurrence predict cancer survivors' health care use?

INTRODUCTION: Fear of cancer recurrence (FCR) is the most frequently cited unmet need among cancer survivors. Theoretical models of FCR suggest that patients with elevated levels of FCR will more frequently consult health care professionals for reassurance about their health. However, the relationship between FCR and health care utilization has not yet been firmly established. We examined the relationship between FCR and quantity of medications, number of emergency room (ER) visits, outpatient visits, specialist visits, allied health visits, and hospital overnight visits. METHODS: A total of 231 participants diagnosed with breast, colon, prostate, or lung cancer in the past 10 years were recruited from a cancer survivor registry. Participants were sent a survey package that included demographic and medical characteristics, a health care utilization questionnaire, and the Fear of Cancer Recurrence Inventory. RESULTS: A multiple regression analysis indicated that higher FCR significantly predicted greater number of outpatient visits in the past 6 months (ß = .016, F(1, 193) = 5.08, p = .025). A hierarchical multiple regression indicated that higher FCR significantly predicted greater number of ER visits in the past 6 months when controlling for relationship status and education level (F(1, 179) = 4.00, p = .047). CONCLUSIONS: The relationship between FCR and health care use has been understudied. Results indicate that patients with elevated FCR may indeed use more health care services. We recommend that clinicians monitor health care use in patients who are struggling with FCR.

The impact of intolerance of uncertainty on anxiety after receiving an informational intervention about HPV: a randomised controlled study.

This study examined the impact of intolerance of uncertainty (IU) and an informational intervention about human papillomavirus (HPV) infection on perceived uncertainty about one's HPV testing status (referred to as 'HPV uncertainty') and anxiety. IU, HPV uncertainty and other pre-intervention measures were assessed through mailed questionnaires. Participants were then randomly assigned to receive either a long (N = 125) or short (N = 124) HPV-specific information pamphlet or a long (N = 131) or short (N = 115) control pamphlet about cancer prevention. Participants subsequently completed measures of HPV uncertainty and anxiety. Providing a lot of HPV information increased HPV uncertainty more than providing little HPV information and cancer prevention information. Among women who received the long HPV or the short control pamphlet, those with higher IU were more anxious than those with lower IU. Women with higher IU are more likely to seek HPV information, but they may also be at risk for experiencing higher anxiety because factual uncertainties about HPV cannot be resolved through the provision of more information.