INTRODUCTION: The Patient Dignity Question (PDQ) is a clinical tool developed with the aim of reinforcing the sense of personhood and dignity, enabling health care providers (HCPs) to see patients as people and not solely based on their illness.
OBJECTIVE: To study the acceptability and feasibility of the Portuguese version of the PDQ (PDQ-PT) in a sample of palliative care patients cared for in primary care (PC).
METHOD: A cross-sectional study using 20 palliative patients cared for in a PC unit. A post-PDQ satisfaction questionnaire was developed.
RESULTS: Twenty participants were included, 75% were male; average age was 70 years old. Patients found the summary accurate, precise, and complete; all said that they would recommend the PDQ to others and want a copy of the summary placed on their family physician's medical chart. They felt the summary heightened their sense of dignity, considered it important that HCPs have access to the summary and indicated that this information could affect the way HCPs see and care for them. The PDQ-PT's took 7 min on average to answer, and 10 min to complete the summary.
SIGNIFICANCE OF RESULTS: The PDQ-PT is well accepted and feasible to use with palliative patients in the context of PC and seems to be a promising tool to be implemented. Future trials are now warranted.
This research study aimed to describe preferences about factors related to receiving information regarding medical treatments and palliative care (PC) options for adult patients with a poor prognosis and/or their primary decision maker. A single-group descriptive study design and content analysis were utilized. Seven trained registered nurse (RN) study team members conducted interviews to obtain narrative data. All study participants preferred to learn PC services earlier in the illness trajectory and desired to learn about this service from nurses. Most reported a desire to have spouses and family involved in decisions about PC. Nearly all wanted to understand PC options ahead of time should treatment not go as planned.
BACKGROUND: Accurate awareness of the prognosis is an important factor in the treatment decision of patients with advanced cancer; however, prognostic disclosure is still subject to debate because it can reduce patient's satisfaction and increase depression.
AIM: The purpose of this study is to assess whether patients' prognostic awareness is associated with decreased quality of life (QoL) or increased depressive mood in patients with advanced cancer.
DESIGN AND PARTICIPANTS: In this cohort study, 386 patients with advanced cancer were recruited across 3 periods from December 2016 to August 2018. The outcome of this study was a change in QoL and depression according to the patients' prognostic awareness at baseline, 3 months, and 6 months.
RESULTS: This study found significant differences in changes of QoL based on patients' prognostic awareness. From baseline to 3 months, emotional functioning (P = .039), pain (P = .042), existential well-being (P = .025), and social support (P = .038) subscale scores improved significantly more in those with lack of prognostic awareness. Over 6 months, the group without prognostic awareness improved significantly in terms of physical functioning (P = .037), emotional functioning (P = .002), nausea/vomiting (P = .048), and constipation (P = .039) subscale scores and existential well-being scores (P = .025). No significant difference between the groups was found in terms of depression.
CONCLUSION: Accurate prognostic awareness may pose harm and may provide no additional benefits in terms of QoL and mood among patients with advanced cancer for a short period of time.
Treatment paradigms for advanced melanoma have changed fundamentally over recent years. A discrete choice experiment was performed to explore patient preferences regarding outcome (overall response rate, 2-year survival rate, progression-free survival, time to response, types of adverse event, probability of adverse event-related treatment discontinuation) and process attributes (frequency and route of administration, frequency of consultations) of modern treatments for melanoma. Mean preferences of 150 patients with melanoma stage IIC-IV were highest for overall response rate (relative importance score (RIS) 26.8) and 2-year survival (RIS 21.6), followed by types of adverse event (RIS 11.7) and probability of adverse event-related treatment discontinuation (RIS 9.2). Interest in overall response rate and 2-year survival declined with increasing age, whereas process attributes gained importance. Participants who had experienced treatment with immune checkpoint inhibitors valued overall response rate more highly and worried less about the type of adverse events. In conclusion, patients with advanced melanoma consider efficacy of treatment options most important, followed by safety, but preferences vary with individual and disease-related characteristics.
BACKGROUND: It is of great importance to understand how patients and their close relatives experience the pros and cons of advanced home care so as to further develop this quickly growing choice of care.
OBJECTIVE: The aim of this study was to explore the experiences of receiving advanced home care among patients affected by life-threatening illness and their close relatives.
DESIGN: The study was an interview study conducted with patients in their homes. Some patient interviews were conducted together with a close relative participating.
SETTING/PARTICIPANTS: Patients registered in advanced home care in 2017 were offered the opportunity to participate in the study. The selection criteria were that the patient was within grade 3 of the Eastern Cooperative Oncology Group's Performance Status, older than 18 years, able to orient to time and place, and not newly registered.
ANALYSIS: The interviews were recorded and transcribed verbatim and analyzed with qualitative content analysis.
RESULTS: A total of 11 interviews were conducted: 8 with patients and 1 or 2 close relatives together; and 3 with the patient alone. It resulted in 3 main categories: create a safe environment, see the person, and better to manage care at home.
CONCLUSION: The results of this study show that patients and close relatives perceived that advanced home care was a safe and secure form of caring during advanced as well as end-of-life care.
Importance: Patients with chronic illness frequently use Physician Orders for Life-Sustaining Treatment (POLST) to document treatment limitations.
Objectives: To evaluate the association between POLST order for medical interventions and intensive care unit (ICU) admission for patients hospitalized near the end of life.
Design, Setting, and Participants: Retrospective cohort study of patients with POLSTs and with chronic illness who died between January 1, 2010, and December 31, 2017, and were hospitalized 6 months or less before death in a 2-hospital academic health care system.
Exposures: POLST order for medical interventions ("comfort measures only" vs "limited additional interventions" vs "full treatment"), age, race/ethnicity, education, days from POLST completion to admission, histories of cancer or dementia, and admission for traumatic injury.
Main Outcomes and Measures: The primary outcome was the association between POLST order and ICU admission during the last hospitalization of life; the secondary outcome was receipt of a composite of 4 life-sustaining treatments: mechanical ventilation, vasopressors, dialysis, and cardiopulmonary resuscitation. For evaluating factors associated with POLST-discordant care, the outcome was ICU admission contrary to POLST order for medical interventions during the last hospitalization of life.
Results: Among 1818 decedents (mean age, 70.8 [SD, 14.7] years; 41% women), 401 (22%) had POLST orders for comfort measures only, 761 (42%) had orders for limited additional interventions, and 656 (36%) had orders for full treatment. ICU admissions occurred in 31% (95% CI, 26%-35%) of patients with comfort-only orders, 46% (95% CI, 42%-49%) with limited-interventions orders, and 62% (95% CI, 58%-66%) with full-treatment orders. One or more life-sustaining treatments were delivered to 14% (95% CI, 11%-17%) of patients with comfort-only orders and to 20% (95% CI, 17%-23%) of patients with limited-interventions orders. Compared with patients with full-treatment POLSTs, those with comfort-only and limited-interventions orders were significantly less likely to receive ICU admission (comfort only: 123/401 [31%] vs 406/656 [62%], aRR, 0.53 [95% CI, 0.45-0.62]; limited interventions: 349/761 [46%] vs 406/656 [62%], aRR, 0.79 [95% CI, 0.71-0.87]). Across patients with comfort-only and limited-interventions POLSTs, 38% (95% CI, 35%-40%) received POLST-discordant care. Patients with cancer were significantly less likely to receive POLST-discordant care than those without cancer (comfort only: 41/181 [23%] vs 80/220 [36%], aRR, 0.60 [95% CI, 0.43-0.85]; limited interventions: 100/321 [31%] vs 215/440 [49%], aRR, 0.63 [95% CI, 0.51-0.78]). Patients with dementia and comfort-only orders were significantly less likely to receive POLST-discordant care than those without dementia (23/111 [21%] vs 98/290 [34%], aRR, 0.44 [95% CI, 0.29-0.67]). Patients admitted for traumatic injury were significantly more likely to receive POLST-discordant care (comfort only: 29/64 [45%] vs 92/337 [27%], aRR, 1.52 [95% CI, 1.08-2.14]; limited interventions: 51/91 [56%] vs 264/670 [39%], aRR, 1.36 [95% CI, 1.09-1.68]). In patients with limited-interventions orders, older age was significantly associated with less POLST-discordant care (aRR, 0.93 per 10 years [95% CI, 0.88-1.00]).
Conclusions and Relevance: Among patients with POLSTs and with chronic life-limiting illness who were hospitalized within 6 months of death, treatment-limiting POLSTs were significantly associated with lower rates of ICU admission compared with full-treatment POLSTs. However, 38% of patients with treatment-limiting POLSTs received intensive care that was potentially discordant with their POLST.
Background: Despite improvements in diagnostics and therapy, the majority of lung tumours are diagnosed at advanced stage IV with a poor prognosis. Due to the nature of an incurable disease, patients need to engage in shared decision making on advance care planning. To implement this in clinical practice, effective communication between patients, caregivers and healthcare professionals is essential. The Heidelberg Milestones Communication Approach (MCA) is delivered by a specifically trained interprofessional tandem and consists of four milestone conversations (MCs) at pivotal times in the disease trajectory. MC 1 (Diagnosis): i.e. prognosis; MC 2 (Stable disease): i.e. prognostic awareness; MC 3 (Progression): i.e. reassessment; MC 4 (Best supportive care): i.e. end of treatment. In between MCs, follow-up calls are carried out to sustain communication. This study aimed to assess to what extent the MCA was implemented as planned and consolidated in specialized oncology practice.
Methods: A prospective observational process evaluation study was conducted, which focused on the implementation fidelity of the MCA. All MCs during two assessment periods were included. We analysed all written records of the conversations, which are part of the routine documentation during MCs and follow-up calls. Adherence to key aspects of the manual was documented on structured checklists at the beginning of the implementation of the MCA and after 6 months. The analysis was descriptive. Differences between the two assessment periods are analysed with chi-square tests.
Results: A total of 133 MCs and 54 follow-up-calls (t1) and of 172 MCs and 92 follow-up calls (t2) were analysed. MC 2 were the most frequently completed conversations (n = 51 and n = 47). Advance care planning was discussed in 26 and 13% of MC 2 in the respective assessment periods; in 31 and 47% of MC 2, prognostic awareness was recorded. The most frequently documented topic in the follow-up calls was the physical condition in patients (82 and 83%).
Conclusion: The implementation of a trajectory-specific communication concept was largely successful. Additional studies are needed to understand how fidelity could be further improved.
Trial registration: DRKS00013469 / Date of registration: 22.12.2017.
In this issue of JAMA, Lee and colleagues examine the association between Physician Orders for Life-Sustaining Treatment (POLST), which involve portable medical orders that document treatment limitations for out-of-hospital emergency care and for limiting overtreatment at the end of life. The authors studied adults with chronic life-limiting illnesses who were hospitalized within the last 6 months of life and who had completed a POLST before their last inpatient admission. Among 1818 patients enrolled, 656 (36%) had POLST orders for “full treatment” and 1162 had orders for either “limited additional interventions” (761 [42%]) or “comfort measures only” (401 [22%]). Among the combined latter 2 groups, 472 (41%) were admitted to the intensive care unit (ICU), 436 (38%) received POLST-discordant intensive care, and 204 (18%) received POLST-discordant life-sustaining treatments, defined as mechanical ventilation, vasoactive infusions, new renal replacement therapy, or cardiopulmonary resuscitation. Patients with cancer or dementia were less likely to receive POLST-discordant intensive care, whereas patients hospitalized for traumatic injuries were more likely to receive POLST-discordant intensive care. These results are sobering.
BACKGROUND: Cancer and its treatment can cause persistent psychosocial consequences for patients. Although distress among the general cancer population has been well studied, many patients who report high distress do not receive specialty, follow-up care. We know little about the distress needs of those who attend appointments with support services. Improved knowledge of this subpopulation of patients with cancer may improve supportive care service delivery.
METHODS: This is a descriptive chart review that examines results from a cancer distress tool in an outpatient supportive care clinic and explores factors associated with distress among patients who attend an appointment for support beyond usual oncologic care. All adult patients with a cancer diagnosis presenting to the supportive care clinic during a 120-day period for an initial intake completed a self-report needs assessment tool. A review of medical records was then conducted. Primarily descriptive statistics, mean comparison, and correlational analysis summarized the data.
RESULTS: Nearly 48% of individuals rated very severe distress in at least one area of functioning. Areas with the highest average distress ratings included pain, fatigue, sleep, and anxiety. No significant associations were found between total distress scores and demographic or illness-related variables. Anxiety and depression were higher among those scheduled to see a behavioral health specialist than a palliative provider.
CONCLUSIONS: Patient and illness factors were not associated with needs among those who attended appointments with support providers. Study results suggest that a biopsychosocial approach from interdisciplinary providers is warranted to manage the needs of patients referred for additional supportive care.
BACKGROUND: Decision-making in palliative care can be complex due to the uncertain prognosis and general fear surrounding decisions. Decision-making in palliative care may be influenced by spiritual and cultural beliefs or values. Determinants of the decision-making process are not completely understood, and spirituality is essential for coping with illness. Thus, this study aims to explore the influence of spirituality on the perception of healthcare decision-making in palliative care outpatients.
METHODS: A cross-sectional study was developed. A battery of tests was administered to 95 palliative outpatients, namely: sociodemographic questionnaire (SQ), Decisional Conflict Scale (DCS), Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being scale (FACIT-Sp), and a semi-structured interview (SSI) to study one's perception of spirituality and autonomy in decision-making. Statistical analyses involved descriptive statistics for SQ and SSI. The Mann-Whitney test was used to compare scale scores between groups and correlations were used for all scales and subscales. The analysis of patients' definitions of spirituality was based on the interpretative phenomenological process.
RESULTS: Spiritual wellbeing significantly correlated with greater levels of physical, emotional and functional wellbeing and a better quality of life. Greater spiritual wellbeing was associated with less decisional conflict, decreased uncertainty, a feeling of being more informed and supported and greater satisfaction with one's decision. Most patients successfully implemented their decision and identified themselves as capable of early decision-making. Patients who were able to implement their decision presented lower decisional conflict and higher levels of spiritual wellbeing and quality of life. Within the 16 themes identified, spirituality was mostly described through family. Patients who had received spiritual care displayed better scores of spiritual wellbeing, quality of life and exhibited less decisional conflict. Patients considered spirituality during illness important and believed that the need to receive spiritual support and specialised care could enable decision-making when taking into consideration ones' values and beliefs.
CONCLUSION: The impact of spiritual wellbeing on decision-making is evident. Spirituality is a key component of overall wellbeing and it assumes multidimensional and unique functions. Individualised care that promotes engagement in decision-making and considers patients' spiritual needs is essential for promoting patient empowerment, autonomy and dignity.
BACKGROUND, AIM, AND HYPOTHESIS: This randomized controlled trial aimed to compare the impact of a physician's attire on the perceptions of patients with cancer of compassion, professionalism, and physician preference. Our hypothesis was that patients would perceive the physician with formal attire as more compassionate than the physician wearing casual attire.
MATERIALS AND METHODS: One hundred five adult follow-up patients with advanced cancer were randomized to watch two standardized, 3-minute video vignettes with the same script, depicting a routine physician-patient clinic encounter. Videos included a physician in formal attire with tie and buttoned-up white coat and casual attire without a tie or white coat. Actors, patients, and investigators were all blinded to the purpose and videos watched, respectively. After each video, patients completed validated questionnaires rating their perception of physician compassion, professionalism, and their overall preference for the physician.
RESULTS: There were no significant differences between formal and casual attire for compassion (median [interquartile range], 25 [10-31] vs. 20 [8-27]; p = .31) and professionalism (17 [13-21] vs. 18 [14-22]; p = .42). Thirty percent of patients preferred formal attire, 31% preferred casual attire, and 38% had no preference. Subgroup analysis did not show statistically significant differences among different cohorts of age, sex, marital status, and education level.
CONCLUSION: Doctors' attire did not affect the perceptions of patients with cancer of physician's level of compassion and professionalism, nor did it influence the patients' preference for their doctor or their trust and confidence in the doctor's ability to provide care. There is a need for more studies in this area of communications skills.
Clinical trial identification number. NCT03168763
IMPLICATIONS FOR PRACTICE: The significance of physician attire as a means of nonverbal communication has not been well characterized. It is an important element to consider, as patient preferences vary geographically, are influenced by cultural beliefs, and may vary based on particular care settings. Previous studies consisted of nonblinded surveys and found increasing confidence in physicians wearing a professional white coat. Unfortunately, there are no randomized controlled trials, to the authors' knowledge, to confirm the survey findings. In this randomized, blinded clinical trial the researchers found that physician's attire did not affect patients' perception of the physician's level of compassion and professionalism. Attire also did not influence the patients' preferences for their doctor or their trust and confidence in the doctor's ability to provide care.
Gender inequality in the form of gender-based violence manifests throughout the course of women's lives but has a particularly unique impact at end of life. We sampled 26 patients and 14 caregivers for this qualitative critical ethnographic study. The study purpose was to describe the lived experience of female palliative care patients in rural Malawi and their caregivers. The specific aims were to (i) analyse physical, spiritual and mental health needs and (ii) guide best healthcare practice. The study was informed by feminist epistemology, which drew us to an analysis focused on how gender inequality and gender-based violence affect the care of those with terminal illness. In this article, based on our findings, we demonstrate how gender inequality manifests through the intersecting gendered vulnerabilities of patients and their caregivers in rural Malawi. The findings specifically provide insight into the gendered nature of care work and how the gendered life trajectories of both patients and caregivers intersect to impact the health and well-being of both groups. Our findings have implications on how palliative care can be scaled up in rural Malawi in support of women who are experiencing intimate partner violence at end of life, and the caregivers responsible for their well-being.
BACKGROUND: Decisions to limit use of life-sustaining treatment occur frequently during hospitalizations, and portable medical orders (also known as Portable Orders for Life-Sustaining Treatment (POLST)) can ensure that patient preferences regarding resuscitation are followed after discharge.
OBJECTIVE: To determine the frequency and predictors of completion of POLST orders for adults with change during hospitalization in resuscitation status to Do Not Resuscitate.
DESIGN: Retrospective observational study at level 1 trauma and academic hospital in Minneapolis, MN, USA PARTICIPANTS: All adults (18 years or older) hospitalized between June 2017 and June 2018, inclusive, with code status changed from Full Code to DNR. For patients with more than one hospitalization during this study interval, only the first hospitalization when DNR was ordered was included in this analysis.
MAIN MEASURES: Completion of POLST orders by time of discharge.
KEY RESULTS: From 2017 to 2018, 160 adults had a change from Full Code to DNR status during index hospitalization and survived to discharge, most (156 patients) to a nursing care facility. Of these, only 50 (31.2%) had POLST orders provided at discharge. Documentation of informed refusal of intubation in addition to DNR status was a significant predictor (OR 4.1, 99% CI 1.5-11.0) of POLST orders on discharge, as was admission to a medical service compared with non-medical service (OR 3.2, 99% CI 1.1-12.2). Palliative care consultants, rather than primary providers on the hospital services, completed most POLST orders.
CONCLUSIONS: Despite primary hospital providers engaging in conversations regarding resuscitation and entering DNR orders during hospitalization, the majority of patients in our study discharged to other care facilities without POLST orders. POLST orders are a simple palliative care tool available to primary hospital providers to help ensure continuity of plan of care at discharge for patients who wish to avoid invasive life-sustaining treatments and/or cardiopulmonary resuscitation.
This study explores how medical students feel about caring for terminally ill patients as well as how their medical courses prepare them for addressing end-of-life (EOL) issues with patients. Four hundred and five Mexican medical students were surveyed through the Student Views on Death questionnaire. The vast majority of students (94%) felt that physicians should inform patients of their impending death. Most students said they felt comfortable talking with (61%) or examining (76%) terminally ill patients. However, only half the students actually talked with patients about death. Participants in our study were interested in learning about EOL medical attention, yet most considered themselves poorly prepared to offer this type of care to terminally ill patients. The study provides objective data on a topic that has scarcely been explored in Mexico, data that will be useful in designing educational activities to improve EOL medical training.
AIMS AND OBJECTIVES: To synthesise and map the literature on the psychological outcomes reported following debriefing of healthcare providers who experience expected and unexpected patient death in either clinical practice or simulation setting.
BACKGROUND: Patient death occurs in both the clinical and simulation environments and can result in psychological stress in healthcare providers and students. While debriefing following patient death has demonstrated the ability to promote positive psychological outcomes, addressing the psychological or emotional stress of the event is inconsistently addressed.
DESIGN: A scoping review was conducted using the Arksey and O'Malley framework.
METHOD: The Cochrane Library, MEDLINE, CINAHL, PsycINFO, JBI and Scopus databases were searched with English language constraints and no limit on publication date. The Scoping Reviews (PRISMA-ScR) Checklist was used (Annals of Internal Medicine, 2018, 169, 467) (see Appendix S1).
RESULTS: Eighteen articles (16 research papers and 2 review papers) met the inclusion criteria. Of the 16 research papers, 9 reported on debriefing models in the simulation environment and 7 in the clinical setting. The types of debriefing models found in the simulation setting tended to focus on healthcare providers' learning, while those in the clinical setting typically focused on healthcare providers' emotional reactions and resulted in positive psychological effects.
CONCLUSION: Debriefing has the potential to positively affect psychological outcomes of healthcare providers who experience patient death. The type of debriefing that is selected is a key component to achieving these positive outcomes.
RELEVANCE TO CLINICAL PRACTICE: This scoping review identified the debriefing frameworks used in both simulation and clinical environments following patient death events, and any associated psychological outcomes. There is a need for debriefing to occur after each death in either environment; however, there is a lack of evidence-based debriefing frameworks that can be used in both the clinical and simulation environments to promote positive psychological outcomes.
Background: Glioma patients make frequent decisions regarding treatment and end-of-life care despite cognitive limitations. We evaluated the feasibility of incorporating the Macarthur Competence Assessment Tool for Treatment (MacCAT-T) to assess decision-making ability in glioma patients.
Methods: High-grade glioma patients were consented to an IRB-approved prospective study at one of three treatment decision time points. Patients completed the Montreal Cognitive Assessment (MoCA) and providers informally assessed patient decision-making ability based on neurologic examination. The MacCAT-T, designed to assess patient decision-making domains, was administered by a research assistant. MoCA, provider assessment, and MacCAT-T results were compared to determine whether the MacCAT-T provided additional information. To assess feasibility, we measured administration time and obtained qualitative patient feedback.
Results: Eleven patients (median age = 68 years, median Karnofsky Performance Status [KPS] = 80–90) were enrolled. MacCAT-T administration averaged 18.5 minutes. Ninety percent of patients reported “increased knowledge of their treatment options” after taking the MacCAT-T. Clinicians deemed 10 patients to possess sufficient decision-making ability, yet, 6 of them demonstrated impairments in reasoning on the MacCAT-T. Seven patients yielded discordant MOCA and MacCAT-T data, five patients with MOCA score =26 showed qualitative MacCAT-T impairments in Reasoning and five patients who scored <21 were within nonimpaired ranges for three of four decision-making domains.
Conclusion: MacCAT-T administration was feasible and informative to patients but findings were discordant from MOCA and informal provider assessments. The MacCAT-T may help in identifying mild Reasoning impairments related to patients' initial treatment decisions and should be studied further to determine its role in clinical practice.
Background: A psychiatric advance directive (PAD) is designed to prevent involuntary mental health interventions by enabling people with serious mental illnesses to plan ahead for their own treatment during a future incapacitating crisis. This study implemented PAD facilitation in assertive community treatment (ACT) teams.
Aims: We examined ACT clients’ attitudes toward PAD facilitators, satisfaction with PAD facilitation, the short-term impact of PAD completion on subjective sense of empowerment and attitudes toward treatment, and whether the type of PAD facilitator made a difference.
Methods: Participants were randomly assigned to be offered PAD facilitation by a peer support specialist or non-peer ACT team clinician, and interviewed at baseline (n = 145) and post-facilitation 1–2-month follow-up (n = 116), to assess perceived consumer-directedness of PAD facilitation, empowerment and various treatment attitudes. Mean scores before and after the intervention were compared for PAD-completers, non-completers, and those who completed a PAD with a peer vs. non-peer. The effect of PAD completion was assessed using logistic and linear regression analysis.
Results: There was no evidence of bias against peer-facilitators. There was a modest positive impact of PAD facilitation on treatment attitudes and empowerment.
Conclusions: PAD facilitation by peer support specialists and others working in community mental health settings supports recovery.
BACKGROUND: Patients with advanced cancer are increasingly expected to self-manage. Thus far, this topic has received little systematic attention.
AIM: To summarise studies describing self-management strategies of patients with advanced cancer and associated experiences and personal characteristics. Also, to summarise attitudes of relatives and healthcare professionals towards patient self-management.
DESIGN: A systematic review including non-experimental quantitative and qualitative studies. Data were analysed using critical interpretive synthesis. Included studies were appraised on methodological quality and quality of reporting.
DATA SOURCES: MEDLINE, Embase, Cochrane Central, PsycINFO, CINAHL, Web of Science and Google Scholar (until 11 June 2019).
RESULTS: Of 1742 identified articles, 31 moderate-quality articles describing 8 quantitative and 23 qualitative studies were included. Patients with advanced cancer used self-management strategies in seven domains: medicine and pharmacology, lifestyle, mental health, social support, knowledge and information, navigation and coordination and medical decision-making (29 articles). Strategies were highly individual, sometimes ambivalent and dependent on social interactions. Older patients and patients with more depressive symptoms and lower levels of physical functioning, education and self-efficacy might have more difficulties with certain self-management strategies (six articles). Healthcare professionals perceived self-management as desirable and achievable if based on sufficient skills and knowledge and solid patient-professional partnerships (three articles).
CONCLUSION: Self-management of patients with advanced cancer is highly personal and multifaceted. Strategies may be substitutional, additional or even conflicting compared to care provided by healthcare professionals. Self-management support can benefit from an individualised approach embedded in solid partnerships with relatives and healthcare professionals.
A growing body of research demonstrates the feasibility and efficacy of psychological interventions for adult patients with advanced cancer. Findings from quantitative studies of psychotherapeutic interventions with primary psychological outcomes for such patients are reviewed here and recommendations for best practice are made. We consider these interventions according to three broad phases in which they are most commonly applied: soon after diagnosis of advanced cancer, when living with the disease, and at or near the end of life. Cumulative evidence from well-designed studies demonstrates the efficacy of psychosocial interventions for patients with advanced disease to relieve and prevent depression, anxiety, and distress related to dying and death, as well as to enhance the sense of meaning and preparation for end of life. Individual and couple-based interventions have been proven to be most feasible, and the development and use of tailored and validated measures has enhanced the rigor of research and clinical care. Palliative care nurses and physicians can be trained to deliver many such interventions, but a core of psychosocial clinicians, including social workers, psychologists, and psychiatrists, is usually required to train other health professionals in their delivery and to ensure their quality. Few of the interventions for which there is evidence of effectiveness have been routinely incorporated into oncology or palliative care. Advocacy on the basis of this evidence is required to build psychosocial resources in cancer treatment settings and to ensure that psychological care receives the same priority as other aspects of palliative care in oncology.
Advanced cancer, with its considerable physical symptoms and psychosocial burdens, represents an existential threat and major stressor to patients and their caregivers. In response to such stress, patients and their caregivers use a variety of strategies to manage the disease and related symptoms, such as problem-focused, emotion-focused, meaning-focused, and spiritual/religious coping. The use of such coping strategies is associated with multiple outcomes, including quality of life, symptoms of depression and anxiety, illness understanding, and end-of-life care. Accumulating data demonstrate that early palliative care, integrated with oncology care, not only improves these key outcomes but also enhances coping in patients with advanced cancer. In addition, trials of home-based palliative care interventions have shown promise for improving the ways that patients and family caregivers cope together and manage problems as a dyad. In this article, we describe the nature and correlates of coping in this population, highlight the role of palliative care to promote effective coping strategies in patients and caregivers, and review evidence supporting the beneficial effects of palliative care on patient coping as well as the mechanisms by which improved coping is associated with better outcomes. We conclude with a discussion of the limitations of the state of science, future directions, and best practices on the basis of available evidence.