Perspectives of Canadian health leaders on the relationship between medical assistance in dying and palliative and end-of-life care services: a qualitative study.

BACKGROUND: Medical assistance in dying (MAiD) was legalized in Canada in 2016, but coordination of MAiD and palliative and end-of-life care (PEOLC) services remains underdeveloped. We sought to understand the perspectives of health leaders across Canada on the relationship between MAiD and PEOLC services and to identify opportunities for improved coordination. METHODS: In this quantitative study, we purposively sampled health leaders across Canada with expertise in MAiD, PEOLC, or both. We conducted semi-structured interviews between April 2021 and January 2022. Interview transcripts were coded independently by 2 researchers and reconciled to identify key themes using content analysis. We applied the PATH framework for Integrated Health Services to guide data collection and analysis. RESULTS: We conducted 36 interviews. Participants expressed diverse views about the optimal relationship between MAiD and PEOLC, and the desirability of integration, separation, or coordination of these services. We identified 11 themes to improve the relationship between the services across 4 PATH levels: client-centred services (e.g., educate public); health operations (e.g., cultivate compassionate and proactive leadership); health systems (e.g., conduct broad and inclusive consultation and planning); and intersectoral initiatives (e.g., provide standard practice guidelines across health care systems). INTERPRETATION: Health leaders recognized that cooperation between MAiD and PEOLC services is required for appropriate referrals, care coordination, and patient care. They identified the need for public and provider education, standardized practice guidelines, relationship-building, and leadership. Our findings have implications for MAiD and PEOLC policy development and clinical practice in Canada and other jurisdictions.

"You begin to give more value in life, in minutes, in seconds": spiritual and existential experiences of family caregivers of patients with advanced cancer receiving end-of-life care in Brazil.

PURPOSE: Facing the end of life may trigger significant distress in family caregivers of patients with advanced cancer. However, few studies have addressed the spiritual and existential concerns of these family caregivers in their end-of-life care journey. This study aimed to understand the spiritual and existential experience of family caregivers of patients with advanced cancer facing the end of life in Brazil. METHODS: A purposive sample of 16 family caregivers of hospitalized terminally ill cancer patients in Brazil participated in in-depth interviews. Data collection and analysis were based on interpretative phenomenological analysis. RESULTS: Three superordinate themes in their spiritual and existential experience were identified: (i) connectedness through caregiving, personal relationships, and spiritual beliefs; (ii) shifting hope: from death as a possibility to preparation for impending death; (iii) reframing suffering and meaning. For these caregivers, the relationship with the patient and with others, their spiritual beliefs, and hope were significant sources of meaning. Hope was sustained by death avoidance, oscillating with death acceptance and hope that it would occur with comfort. Family caregivers also experienced existential and spiritual suffering in the form of guilt, suppressed emotions, and loneliness. CONCLUSION: Health care providers should address and support caregivers' spiritual needs and their relationships with the patient and others during end-of-life care and facilitate reflection regarding existential concerns, meaning, and preparation for impending death.

Exploring key stakeholders' attitudes and opinions on medical assistance in dying and palliative care in Canada: a qualitative study protocol.

INTRODUCTION: Canadians have had legal access to medical assistance in dying (MAiD) since 2016. However, despite substantial overlap in populations who request MAiD and who require palliative care (PC) services, policies and recommended practices regarding the optimal relationship between MAiD and PC services are not well developed. Multiple models are possible, including autonomous delivery of these services and formal or informal coordination, collaboration or integration. However, it is not clear which of these approaches are most appropriate, feasible or acceptable in different Canadian health settings in the context of the COVID-19 pandemic and in the post-pandemic period. The aim of this qualitative study is to understand the attitudes and opinions of key stakeholders from the government, health system, patient groups and academia in Canada regarding the optimal relationship between MAiD and PC services. METHODS AND ANALYSIS: A qualitative, purposeful sampling approach will elicit stakeholder feedback of 25-30 participants using semistructured interviews. Stakeholders with expertise and engagement in MAiD or PC who hold leadership positions in their respective organisations across Canada will be invited to provide their perspectives on the relationship between MAiD and PC; capacity-building needs; policy development opportunities; and the impact of the COVID-19 pandemic on the relationship between MAiD and PC services. Transcripts will be analysed using content analysis. A framework for integrated health services will be used to assess the impact of integrating services on multiple levels. ETHICS AND DISSEMINATION: This study has received ethical approval from the University Health Network Research Ethics Board (No 19-5518; Toronto, Canada). All participants will be required to provide informed electronic consent before a qualitative interview is scheduled, and to provide verbal consent prior to the start of the qualitative interview. Findings from this study could inform healthcare policy, the delivery of MAiD and PC, and enhance the understanding of the multilevel factors relevant for the delivery of these services. Findings will be disseminated in conferences and peer-reviewed publications.

Suicide Risk Screening and Suicide Prevention in Patients With Cancer.

Background: Suicide rates are up to 4 times greater in cancer compared with the general population, yet best practices for institutional suicide prevention are unknown. The objective of this study was to examine the association between suicide risk screening (SRS), clinician response, and suicide mortality at a comprehensive cancer treatment center. Methods: We conducted a naturalistic, retrospective cohort study of patients attending the Princess Margaret Cancer Centre, where routine screening for suicidal intent within the Distress Assessment and Response Tool (DART-SRS) was implemented in 2010. Inverse probability of treatment weighting was used to evaluate the impact of DART-SRS completion on suicide mortality from 2005 to 2014. Chart audits were conducted for clinician response to suicidality, and crude suicide rates over the study period were analyzed. All statistical tests were 2-sided. Results: Among 78 650 cancer patients, 89 (0.1%) died by suicide, of whom only 4 (4.5%) had completed DART-SRS. Among DART-SRS completers (n = 14 517), 69 (0.5%) reported suicidal intent, none of whom died by suicide. DART-SRS completion was associated with increased clinician response to suicidality (17.4% vs 6.7%, P = .04), more psychosocial service usage (30.5% vs 18.3%, P < .001), and lower suicide mortality (hazard ratio = 0.29, 95% confidence interval = 0.28 to 0.31). Crude suicide rates at the Princess Margaret Cancer Centre were lower in patients whose first contact year was after DART-SRS implementation. Conclusion: DART-SRS completion is associated with lower suicide mortality and increased access to psychosocial care, but patients who did not complete DART-SRS were at highest suicide risk. Further research is needed to identify mechanisms to ensure psychosocial and suicidality assessment in cancer patients who do not complete SRS.

'The experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care: A meta-synthesis'.

INTRODUCTION: Spirituality is a multidimensional aspect of human experience. In the context of palliative care, it is an individual resource that can be used to cope with illness and to assign new meanings to suffering. Qualitative studies that aim to investigate the experience of spirituality and the needs of family caregivers in this context are rare. OBJECTIVE: This meta-synthesis aimed to synthesise qualitative studies on the experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care. METHODS: A systematic review was performed in six databases, and 14 studies were included in this meta-synthesis. RESULTS: The results are presented as a thematic synthesis divided into two analytical themes: (1) The interweaving of spirituality with end-of-life care and (2) The dimensions of suffering and spirituality in the dying process of the loved one. Each analytical theme is explained by two descriptive themes. The results showed that family caregivers express their spirituality in a multidimensional way, giving meaning to the care provided and reassessing the meanings of their lives and their suffering. CONCLUSION: Investigating the suffering and spiritual needs of family members in this context may be of value to inform comprehensive and multi-professional psychosocial care.

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

BACKGROUND: Evidence 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 METHODS: Administrative 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. RESULTS: Late 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. CONCLUSIONS: Following robust evidence from trials supporting early palliative care for patients with advanced cancer, patients were referred substantially earlier to outpatient palliative care. IMPLICATIONS FOR PRACTICE: Following 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.

Psychotherapeutic Approach for Advanced Illness: Managing Cancer and Living Meaningfully (CALM) Therapy.

With advances in medical treatment and an aging population, there is an increasing global burden of advanced and life-limiting illnesses. Individuals living with these conditions may experience substantial distress related to disease progression, changes in important roles and life goals, loss of meaning, and uncertainty about the future, but there has been limited evidence to inform their psychotherapeutic care. Managing cancer and living meaningfully (CALM) therapy is a brief, evidence-based, semistructured intervention that provides a framework to address practical issues, such as navigating the health care system and treatment decisions, and existential issues, including finding meaning and hope in the face of mortality. CALM has been shown to alleviate and prevent depression and to facilitate preparation for the end of life among patients with advanced cancer. It is being adapted to other life-threatening illnesses and different cultural contexts and health care settings. Advocacy is needed to support such approaches for individuals living with advanced and life-threatening illness.

Exit Music: The Experience of Music Therapy within Medical Assistance in Dying.

Since the 2015 Canadian legalization of medical assistance in dying (MAiD), many Canadian music therapists have become involved in the care of those requesting this procedure. This qualitative study, the first of its kind, examines the experience of music therapy within MAiD, exploring lived experience from three perspectives: the patient, their primary caregiver, and the music therapist/researcher. Overall thematic findings of a hermeneutic phenomenological analysis of ten MAiD cases demonstrate therapeutically beneficial outcomes in terms of quality of life, symptom management, and life review. Further research is merited to continue an exploration of the role of music therapy in the context of assisted dying.

A cross-sectional gender-sensitive analysis of depressive symptoms in patients with advanced cancer.

BACKGROUND: Patients with advanced cancer commonly report depressive symptoms. Examinations of gender differences in depressive symptoms in patients with advanced cancer have yielded inconsistent findings. AIM: The objective of this study was to investigate whether the severity and correlates of depressive symptoms differ by gender in patients with advanced cancer. DESIGN: Participants completed measures assessing sociodemographic and medical characteristics, disease burden, and psychosocial factors. Depressive symptoms were examined using the Patient Health Questionnaire, and other measures included physical functioning, symptom burden, general anxiety, death related distress, and dimensions of demoralization. A cross-sectional analysis examined the univariate and multivariate relationships between gender and depressive symptoms, while controlling for important covariates in multivariate analyses. SETTING/PARTICIPANTS: Patients with advanced cancer (N = 305, 40% males and 60% females) were recruited for a psychotherapy trial from outpatient oncology clinics at a comprehensive cancer center in Canada. RESULTS: Severity of depressive symptoms was similar for males (M = 7.09, SD = 4.59) and females (M = 7.66, SD = 5.01), t(303) = 1.01, p = 0.314. Greater general anxiety and number of cancer symptoms were associated with depressive symptoms in both males and females. Feeling like a failure (ß = 0.192), less death anxiety (ß = -0.188), severity of cancer symptoms (ß = 0.166), and older age (ß = 0.161) were associated with depressive symptoms only in males, while disheartenment (ß = 0.216) and worse physical functioning (ß = 0.275), were associated with depressive symptoms only in females. CONCLUSIONS: Males and females report similar levels of depressive symptoms but the pathways to depression may differ by gender. These differences suggest the potential for gender-based preventive and therapeutic interventions in this population.

The impact of attachment security on death preparation in advanced cancer: The role of couple communication.

OBJECTIVE: Attachment security protects psychological well-being in patients with advanced cancer, but its effect on death preparation in this population has not been demonstrated. We examined the relationship of attachment security to death preparation in advanced cancer and tested whether couple communication mediates this relationship and whether gender and age moderate this mediating effect, using longitudinal data from a psychotherapy trial. METHODS: Patients with advanced cancer who lived with a partner (Nbaseline = 289) completed measures of attachment security (attachment avoidance, attachment anxiety), couple communication, and death preparation (preparation for end of life, life completion) and attendant health involvement (relationship with healthcare provider). A moderated mediation model was evaluated at each time period (baseline, 3 months, and 6 months). RESULTS: Couple communication mediated the relationship of attachment security to preparation for end of life and life completion (b's = -.06 to -.10). Anxiety × Gender effects on baseline couple communication (P's = .016) indicated that women with greater attachment anxiety reported worse communication than their male counterparts. Couple-communication × Gender × Age effects on baseline preparation for end of life (P = .007-.020) suggested that women showed better preparation with better couple communication. Younger patients reported less preparation than older patients, especially with poorer communication, but their preparation increased with better communication, especially in younger men. CONCLUSIONS: Attachment security supports death preparation in advanced cancer partly through better couple communication. Couple-based psychotherapeutic interventions, especially for younger individuals and women with attachment anxiety, may facilitate constructive conversations and death preparation.

"I'm going to push this door open. You can close it": A qualitative study of the brokering work of oncology clinic nurses in introducing early palliative care.

BACKGROUND: Early palliative care improves quality of life during life-prolonging treatment for patients with cancer, but the role of nurses in facilitating the early involvement of palliative care is unclear. AIM: To conceptualize the psychosocial processes involved in the introduction and provision of palliative care by oncology nurses. DESIGN: A constructivist qualitative grounded theory study was conducted. SETTING/PARTICIPANTS: A total of 20 nurses (6 staff nurses, 10 nurse practitioners, and 4 advanced practice nurses) completed semi-structured interviews. Participants were from multiple ambulatory care oncology clinics (i.e. breast, pancreatic, hematology) in a comprehensive cancer center. RESULTS: The core category, brokering palliative care, represented the overarching concept of the study that linked other subcategories. The other subcategories were as follows: opening the door-creating the possibility of discussing early palliative care at a time when patients show signs of being receptive to this discussion; building trust-establishing relationships with patients as a starting point for open discussions about palliative care; tackling misconceptions-addressing patients' assumptions about palliative care as signifying death; and advocating with oncologists-seeding the process of referral by bringing patients' concerns forward. CONCLUSION: Oncology nurses play a central role in "brokering" the introduction of early palliative care; this process is supported by their relational proximity to patients and their location "in between" the patient and the oncologist. Training all nurses in palliative care and empowering them to have proactive discussions in a collaborative practice context would allow greater access to early palliative care.

A Qualitative Study of a Compassion, Presence, and Resilience Training for Oncology Interprofessional Teams.

The well-being of health care providers may be challenged by their work, with evidence that oncology health care providers are a high-risk group for burnout. The present qualitative pilot study evaluated a mindfulness-based group intervention, referred to as Compassion, Presence, and Resilience Training (CPR-T), for oncology interprofessional teams. The purpose of this study was to elucidate the subjective experience of oncology health care providers receiving CPR-T and their perceptions of its benefits, risks, or challenges. The CPR-T was delivered to providers from two oncology teams in a large cancer center in Canada. Ten of these providers participated in semistructured interviews 1 to 5 months after completing the CPR-T. The interview transcripts were coded using a thematic analysis strategy. Five benefits of the CPR-T were identified: learning to pause, acquiring a working definition of stress and self-care, becoming fully present, building self-compassion, and receiving organizational acknowledgment and recognition of stress. In addition, two participant-identified challenges were recognized: sharing vulnerability within interprofessional teams and committing to a sitting meditation practice. These findings demonstrate positive transformations as a result of the CPR-T, as well as important challenges, and have important implications for holistic health care practice in oncology. Further research is necessary to validate the findings of this explorative study.

Pain in patients with newly diagnosed or relapsed acute leukemia.

PURPOSE: Acute leukemia (AL) is associated with substantial morbidity and mortality. We assessed the prevalence and correlates of pain in patients with newly diagnosed or relapsed AL. METHODS: Patients with newly diagnosed or relapsed AL admitted to a comprehensive cancer center completed the Memorial Symptom Assessment Scale (MSAS), which assesses prevalence, severity, and distress associated with pain and other symptoms. Factors associated with severe pain were assessed using logistic regression. Two raters completed chart reviews in duplicate for patients with severe pain (MSAS severity ≥ 3/4) to determine the site of pain. RESULTS: Three hundred eighteen patients were recruited from January 2008 to October 2013: 245 (77.0%) had acute myeloid or acute promyelocytic leukemia (AML/APL) and 73 (23.0%) had acute lymphoblastic leukemia (ALL); 289 (90.9%) were newly diagnosed and 29 (9.1%) had relapsed disease. Pain was reported in 156/318 (49.2%), of whom 55/156 (35.3%) reported severe pain (≥ 3/4). Pain was associated with all psychological symptoms (all p < 0.005) and some physical symptoms. Severe pain was associated with younger age (p = 0.02), worse performance status (p = 0.04), ALL diagnosis (p = 0.04), and time from onset of chemotherapy (p = 0.03), with pain peaking at 4 weeks after chemotherapy initiation. The most common sites of severe pain were oropharynx (22; 40%), head (12; 21.8%), and abdomen (11; 20%). Only 3 patients (0.9%) were referred to the symptom control/palliative care team during the month prior to or following assessment. CONCLUSIONS: Pain is frequent, distressing, and predictable in patients undergoing induction chemotherapy for AL. Further research is needed to assess the efficacy of early supportive care in this population.

Integration of oncology and palliative care: a Lancet Oncology Commission.

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.

Managing Cancer and Living Meaningfully (CALM): A Randomized Controlled Trial of a Psychological Intervention for Patients With Advanced Cancer.

Purpose Individuals with advanced cancer experience substantial distress in response to disease burden and impending mortality. Managing Cancer And Living Meaningfully (CALM) is a novel, brief, manualized psychotherapeutic intervention intended to treat and prevent depression and end-of-life distress in patients with advanced cancer. We conducted a randomized controlled trial to compare CALM with usual care (UC) in this population. Methods Patients with advanced cancer were recruited from outpatient oncology clinics at a comprehensive cancer center into an unblinded randomized controlled trial. Permuted block randomization stratified by Patient Health Questionnaire-9 depression score allocated participants to CALM plus UC or to UC alone. Assessments of depressive symptoms (primary outcome), death-related distress, and other secondary outcomes were conducted at baseline, 3 months (primary end point), and 6 months (trial end point). Analyses were by intention to treat. Analysis of covariance was used to test for outcome differences between groups at follow-up, controlling for baseline. Mixed-model results are reported. Results Participants (n = 305) were recruited between February 3, 2012, and March 4, 2016, and randomly assigned to CALM (n = 151) or UC (n = 154). CALM participants reported less-severe depressive symptoms than UC participants at 3 months (Δ = 1.09; P = .04; Cohen's d = 0.23; 95% CI, 0.04 to 2.13) and at 6 months (Δ = 1.29; P = .02; d = 0.29; 95% CI, 0.24 to 2.35). Significant findings for greater end-of-life preparation at 6 months also favored CALM versus UC. No adverse effects were identified. Conclusion Findings suggest that CALM is an effective intervention that provides a systematic approach to alleviating depressive symptoms in patients with advanced cancer and addresses the predictable challenges these patients face.

Caregiver quality of life in advanced cancer: Qualitative results from a trial of early palliative care.

BACKGROUND: Early involvement of palliative care improves patient quality of life; however, quantitative studies have not yet demonstrated a similar effect for caregivers, for whom the construct of quality of life is less well developed. AIM: To conceptualise quality of life of caregivers from their own perspective and to explore differences in themes between those who did or did not receive an early palliative care intervention. DESIGN: Qualitative grounded theory study. SETTING: Tertiary comprehensive cancer centre. PARTICIPANTS: Following participation in a cluster-randomised trial of early palliative care, 23 caregivers (14 intervention and 9 control) of patients with advanced cancer participated in semi-structured interviews to discuss their quality of life. RESULTS: The core category was 'living in the patient's world'. Five related themes were 'burden of illness and caregiving', 'assuming the caregiver role', 'renegotiating relationships', 'confronting mortality' and 'maintaining resilience'. There was thematic consistency between trial arms, except for the last two themes, which had distinct differences. Participants in the intervention group engaged in open discussion about the end of life, balanced hope with realism and had increased confidence from a range of professional supports. Controls tended to engage in 'deliberate ignorance' about the future, felt uncertain about how they would cope and lacked knowledge of available supports. CONCLUSIONS: Caregiver quality of life is influenced profoundly by the interaction with the patient and should be measured with specific questionnaires that include content related to confronting mortality and professional supports. This would improve delineation of quality of life for caregivers and allow greater sensitivity to change. Registration: clinicaltrials.gov NCT01248624.

Lost and stranded: the experience of younger adults with advanced cancer.

PURPOSE: There has been increased awareness recently of the unique medical and psychosocial needs of adolescents and young adults (AYAs) with cancer. However, the existing AYA literature is mainly focused on curative disease or survivorship rather than on advanced disease. Using qualitative methodology, we sought to understand the experience of younger adults with advanced cancer. METHODS: Participants were interviewed using open-ended, discovery-oriented interviews. Data was analyzed using thematic analysis. In total, ten English-speaking advanced cancer patients who were being treated at a comprehensive cancer center in Canada, were interviewed. Participants were between the ages of 18 and 35, and seven of them were female. RESULTS: The diagnosis of cancer was universally experienced as isolating and unexpected, with serious illness regarded as a problem of older individuals. The core challenge of living in the face of dying was felt to be constantly present yet typically unarticulated. Meaning-making tended to be constructed around future-oriented goals rather than upon the life that had been lived. Individuals felt forcefully removed from the stream of life, with a perceived interruption in the developmental tasks of establishing adult identity, becoming autonomous, and forming new relationships. All cited a need for young adult-specific services, yet none could describe specific services that would be beneficial. Many expressed reluctance to engage in individual psychotherapeutic treatment. CONCLUSIONS: Advanced cancer in younger adults was perceived by them as isolating and as interfering with age-appropriate developmental tasks. Creative and flexible psychosocial support programs are needed to engage this population with limited expected survival.

Experiences of patients and caregivers with early palliative care: A qualitative study.

BACKGROUND: Early palliative care improves quality of life and satisfaction with care and is increasingly endorsed for patients with advanced cancer. However, little is known about the experience of receiving early palliative care from a patient and caregiver perspective. AIM: The aim of this qualitative study was to determine, from a participant perspective, the experience of receiving early palliative care and elements of that care. DESIGN: Qualitative grounded theory study using individual interviews. SETTING/PARTICIPANTS: The study took place at a comprehensive cancer centre. Patients ( n = 26) and caregivers ( n = 14) from the intervention arm of a cluster-randomised controlled trial of early palliative care versus standard oncology care participated in qualitative interviews. Participants were asked to comment on their quality of life, the quality of care provided over the intervention period and their experiences with the palliative care team. RESULTS: Participants described feeling supported and guided in their illness experience and in their navigation of the healthcare system. Specific elements of early palliative care included prompt, personalised symptom management; holistic support for patients and caregivers; guidance in decision-making; and preparation for the future. Patients with symptoms particularly valued prompt attention to their physical concerns, while those without symptoms valued other elements of care. Although three patients were ambivalent about their current need for palliative care, no distress was reported as a consequence of the intervention. CONCLUSION: The elements of care described by participants may be used to develop, support and refine models of early palliative care for patients with cancer.