BACKGROUND: Nationally, only one-third of children survive to hospital discharge after initial presentation with out-of-hospital cardiac arrest (OHCA). Of those children who survive, less than 25% leave the hospital at their functional baseline. Given these poor outcomes, such patients could benefit from palliative care involvement.
AIMS: To characterize the existing use and identify barriers to seeking palliative care consults in children admitted to the Pediatric Intensive Care Unit (PICU) with OHCA.
DESIGN: Mixed-methods quasi-experimental study.
PARTICIPANTS: Physicians (MD/DO), nurse practitioners, and registered nurses who provide care in the PICU.
RESULTS: Overall, nurses felt palliative care was consulted "not nearly enough" (43%), while the majority of physicians (53.9%) perceived palliative care services are requested either "just the right amount" (30.8%) or "too often" (23.1%). The top 3 desired palliative services were (1) patient and family psychosocial support, (2) assistance with determining goals of care, and (3) counseling and education. Barriers to consults were forgetting/not thinking about consulting, and family refusal of palliative care consult. No statistical differences among participant groups were found for likelihood to consult palliative care, unless the patient faced imminent death.
CONCLUSIONS: Pediatric Intensive Care Unit providers desire assistance from palliative care teams for help with identifying goals of care, providing psychosocial support, as well as education to the patients and their families. Unfortunately, there remains a large discrepancy between physicians and nurses when it comes to how often palliative care is, and should, be consulted.
In the partnership between the medical departments of Würzburg University, Germany, and Nagasaki University, Japan, palliative care is a relevant topic. The aim of the study was to perform a comparative analysis of the hospital-based palliative care teams in Würzburg (PCT-W) and Nagasaki (PCT-N). Survey of staff composition and retrospective analysis of PCT patient charts in both PCTs were conducted. Patients self-assessed their symptoms in PCT-W and in Radiation Oncology Würzburg (RO-W). The (negative) quality indicator 'percentage of deceased hospitalised patients with PCT contact for less than 3 days before death' (Earle in Int J Qual Health Care 17(6):505-509, 2005) was analysed. Both PCTs follow a multidisciplinary team approach. PCT-N saw 410 cancer patients versus 853 patients for PCT-W (22.8% non-cancer patients). The Eastern Cooperative Oncology Group Performance Status at first contact with PCT-N was 3 or 4 in 39.3% of patients versus 79.0% for PCT-W. PCT-N was engaged in co-management longer than PCT-W (mean 20.7 days, range 1-102 versus mean 4.9 days, range 1-48). The most frequent patient-reported psychological symptom was anxiety (family anxiety: 98.3% PCT-W and 88.7% RO-W, anxiety 97.9% PCT-W and 85.9% RO-W), followed by depression (98.2% PCT-W and 80.3% RO-W). In 14 of the 148 deceased patients, PCT-N contact was initiated less than 3 days before death (9.4%) versus 121 of the 729 deceased PCT-W patients (16.6%). Psychological needs are highly relevant in both Germany and Japan, with more than 85% anxiety and depression in patients in the Japanese IPOS validation study (Sakurai in Jpn J Clin Oncol 49(3):257-262, 2019). This should be taken into account when implementing PCTs.
BACKGROUND: There is evidence that psychosocial and spiritual interventions of short duration, such as reminiscence therapy, provide positive impacts on quality of life and emotional and existential well-being in adults receiving palliative care.
AIM: To determine (1) the feasibility of integrating 'LIFEView', a video-based software with >1600 videos of world destinations, in palliative care settings, and (2) positive, neutral or harmful effects of using 'LIFEView' videos.
DESIGN: A mixed-methods pre-post intervention pilot study was conducted to collect feasibility and preliminary data on physical and psychological symptoms, physiological indicators, spiritual well-being and aspects of quality of life.
SETTING/PARTICIPANTS: Adult patients on an inpatient palliative care unit or receiving care from a community palliative care consultation team who were capable of providing consent and completing the outcome measures were eligible participants.
RESULTS: Overall, 27/41 (66%) participants took part in the study. Feasibility criteria, including participant acceptability, low participant burden, tool completion rate and retention rate, were fulfilled, though challenges were experienced with recruitment. Modest improvements, though non-significant, were shown on preliminary data collected on physical and psychological symptoms using the Edmonton Symptom Assessment System-revised, spiritual well-being assessed by the 12-item Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being scale and physiological measurements. Qualitative analysis revealed five themes: motivations for using 'LIFEView', perceptions of the technology, reminiscence, 'LIFEView' as an adaptable technology and ongoing or future use.
CONCLUSION: A future adequately powered study to investigate the impacts of 'LIFEView' on patient well-being and quality of life appears to be feasible.
Purpose: The aim of the study was to determine the effectiveness of dignity therapy for end-of-life patients with cancer.
Methods: This study used a quasi-experimental study design with a nonrandomized controlled trial. Dignity therapy was used as an intervention in the experimental group, and general visit was used in the control group. Thirty end-of-life patients with cancer were recruited, with 16 in the experimental group and 14 in the control group. Outcome variables were the participants' dignity, demoralization, and depression. Measurements were taken at the following time points: pre-test (before intervention), post-test 1 (the 7th day), and post-test 2 (the 14th day). The effectiveness of the interventions the two groups was measured using the generalized estimating equation, with the p value set to be less than 0.05.
Results: After dignity therapy, the end-of-life patients with cancer reflected increased dignity significantly [ß = -37.08, standard error (SE) = 7.43, Wald 2 = 24.94, p < 0.001], whereas demoralization (ß = -39.55, SE = 6.42, Wald 2 = 37.95, p < 0.001) and depression (ß = -12.01, SE = 2.17, Wald 2 = 30.71, p < 0.001) were both reduced significantly.
Conclusion: Clinical nurses could be adopting dignity therapy to relieve psychological distress and improve spiritual need in end-of-life patients with cancer. Future studies might be expanded to looking at patients vis-à-vis end-of-life patients without cancer to improve their psychological distress. These results provide reference data for the care of end-of-life patients with cancer for nursing professionals.
Bereavement care is considered an integral component of quality end-of-life care endorsed by the palliative care movement. However, few hospitals and health care institutions offer universal bereavement care to all families of patients who die. The current COVID-19 pandemic has highlighted this gap and created a sense of urgency, from a public health perspective, for institutions to provide support to bereaved family members. In this article, drawing upon the palliative care and bereavement literature, we offer suggestions about how to incorporate palliative care tools and psychological strategies into bereavement care for families during this pandemic.
BACKGROUND: Informal caregivers of palliative patients show higher levels of depression and distress compared with the general population. Fegg's (2013) existential behavioural therapy was shortened to two individual 1-h sessions (short-term existential behavioural therapy).
AIM: Testing the effectiveness of sEBT on psychological symptoms of informal caregivers in comparison with active control.
DESIGN: Randomised controlled trial.
SETTING/PARTICIPANTS: Informal caregivers of palliative in-patients.
METHODS: The primary outcome was depression; secondary outcomes were anxiety, subjective distress and minor mental disorders, positive and negative affect, satisfaction with life, quality of life and direct health care costs. General linear mixed models allow several measurements per participant and change over time. Reasons for declining the intervention were investigated by Rosenstock's Health Belief Model.
RESULTS: Overall inclusion rate was 41.0%. Data of 157 caregivers were available (63.1% females; mean age: 54.6 years, standard deviation (SD): 14.1); 127 participants were included in the main analysis. Participation in sEBT or active control was not significantly associated with post-treatment depression. Outcomes showed prevailingly significant association with time of investigation. Self-efficacy, scepticism of benefit of the intervention, belief of better coping alone and support by family and friends were significant factors in declining participation in the randomised controlled trial.
CONCLUSION: Inclusion rate was tripled compared with a previously evaluated longer EBT group intervention. By shortening the intervention, inclusion rate was traded for effectiveness and the intervention could not impact caregivers' psychological state. Early integration of sEBT and combination of individual and group setting and further study of the optimal length for caregiver interventions are suggested.
The psychodynamic treatment of dying cancer patients is a relatively neglected area in practice and the literature. Death anxiety in these patients often results in countertransferences that lead therapists to exclude dying patients for treatment or avoid discussing their patients' concerns about dying. This article offers the reader an exposure to a clinician's immersion in the psychodynamic treatment of cancer patients for over 40 years and offers recommendations that meet the needs of patients facing death. Interventions that may lessen the patient's death anxiety and the therapist's countertransferences include: advocating for the patient's quality of life, taking a common sense approach to denial, helping the patient accept “uncertainty” regarding prognosis, providing a flexible approach that includes support and medication, validating the patient's life contributions, elevating the patient's self-esteem, and exploring the patient's concerns about dying. In addition, the article will also provide many case examples of meaningful psychotherapeutic work at the end of life, including mastering longstanding psychological conflicts, forgiving oneself for past mistakes, establishing a legacy, and healing relationships.
Le couple est "une foule à deux" disait Freud. Il s’agit d’une relation entre deux êtres qui est marquée d’un fonctionnement particulier. Le couple a ses habitudes, ses modes de vie, ses règles de fonctionnement plus ou moins tacites. Face à la maladie, le couple est ébranlé. Chacun vit une réalité différente avec ses appréhensions et ses craintes qui lui sont singulières : "Je n’ai pas le droit de me plaindre, c’est lui qui est malade…". Une asymétrie se crée entre "celui qui est malade" et "celui qui est (censé) être bien portant". Pourtant, le partenaire de vie est touché, lui aussi, dans son corps et dans son être. Des troubles du sommeil, de l’appétit, une fatigue physique et psychique, sont souvent constatés. Un sentiment d’impuissance, de culpabilité, de non-légitimité "à dire" ce qu’il ressent à son proche malade est prégnant. Un climat de non-dits règne au sein du couple. Au travers de situations cliniques relatées, nous partirons de l’observation que le soutien apporté aux proches permet de maintenir les ressources personnelles de l’aidant et favorise "l’accordage" relationnel, la communication au sein du couple. Aider le couple dans les différentes crises induites par la maladie grave, peut lui permettre de développer une nouvelle dynamique. De manière préventive, cela permet de favoriser la transmission et l’accompagnement du deuil à venir pour le proche.
By 2060, almost 25% (98 million) of the population is expected to be aged 65 or older. Health care professionals who provide hospice and palliative care are overtasked and demonstrate symptoms of burnout. Narrative medicine and mindfulness interventions create meaningful connections with patients, improve the delivery of patient-centered care, and enhance the health of the caregivers. In this pilot program, health care professionals in hospice and palliative care settings were invited to participate in a study to evaluate the impact of narrative medicine or mindfulness on measures of burnout and empathy. Participants completed baseline and 12-week post-intervention surveys of burnout and empathy, as well as weekly journals of their experience. Mean overall scores for depersonalization were significantly reduced at 12-week post-intervention. There were no significant changes in emotional exhaustion or empathy compared to baseline. This brief, weekly intervention may be beneficial for both patients and health care professionals in the hospice and palliative care setting.
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.
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.
Background: Critical illness increases the risk for poor mental health outcomes among both patients and their informal caregivers, especially their surrogate decision-makers. Surrogates who must make life-and-death medical decisions on behalf of incapacitated patients may experience additional distress. EMPOWER (Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience) is a novel cognitive-behavioral, acceptance-based intervention delivered in the intensive care unit (ICU) setting to surrogate decision-makers designed to improve both patients’ quality of life and death and dying as well as surrogates’ mental health.
Methods: Clinician stakeholder and surrogate participant feedback (n = 15), as well as results from an open trial (n = 10), will be used to refine the intervention, which will then be evaluated through a multisite randomized controlled trial (RCT) (n = 60) to examine clinical superiority to usual care. Feasibility, tolerability, and acceptability of the intervention will be evaluated through self-report assessments. Hierarchical linear modeling will be used to adjust for clustering within interventionists to determine the effect of EMPOWER on surrogate differences in the primary outcome, peritraumatic stress. Secondary outcomes will include symptoms of post-traumatic stress disorder, prolonged grief disorder, and experiential avoidance. Exploratory outcomes will include symptoms of anxiety, depression, and decision regret, all measured at 1 and 3 months from post-intervention assessment. Linear regression models will examine the effects of assignment to EMPOWER versus the enhanced usual care group on patient quality of life or quality of death and intensity of care the patient received during the indexed ICU stay assessed at the time of the post-intervention assessment. Participant exit interviews will be conducted at the 3-month assessment time point and will be analyzed using qualitative thematic data analysis methods.
Discussion: The EMPOWER study is unique in its application of evidence-based psychotherapy targeting peritraumatic stress to improve patient and caregiver outcomes in the setting of critical illness. The experimental intervention will be strengthened through the input of a variety of ICU stakeholders, including behavioral health clinicians, physicians, bereaved informal caregivers, and open trial participants. Results of the RCT will be submitted for publication in a peer-reviewed journal and serve as preliminary data for a larger, multisite RCT grant application.
Trial registration: ClinicalTrials.gov, NCT03276559. Retrospectively registered on 8 September 2017.
CONTEXT: Psychological symptoms are common among palliative care patients with advanced illness, and their effect on quality of life can be as significant as physical illness. The demand to address these issues in palliative care is evident, yet barriers exist to adequately meet patients' psychological needs.
OBJECTIVES: This article provides an overview of mental health issues encountered in palliative care, highlights the ways psychologists and psychiatrists care for these issues, describes current approaches to mental health services in palliative care, and reviews barriers and facilitators to psychology and psychiatry services in palliative care, along with recommendations to overcome barriers.
RESULTS: Patients in palliative care can present with specific mental health concerns that may exceed palliative care teams' available resources. Palliative care teams in the USA typically do not include psychologists or psychiatrists, but in palliative care teams where psychologists and psychiatrists are core members of the treatment team, patient well-being is improved.
CONCLUSION: Psychologists and psychiatrists can help meet the complex mental health needs of palliative care patients, reduce demands on treatment teams to meet these needs and are interested in doing so; however, barriers to providing this care exist. The focus on integrated care teams, changing attitudes about mental health, and increasing interest and training opportunities for psychologists and psychiatrists to be involved in palliative care, may help facilitate the integration of psychology and psychiatry into palliative care teams.
Background: Adults with metastatic cancer frequently report anxiety and depression symptoms, which may impact health behaviors such as advance care planning (ACP).
Objective: The study leveraged acceptance and commitment therapy (ACT), an evidence-based approach for reducing distress and improving health behaviors, and adapted it into a multimodal intervention (M-ACT) designed to address the psychosocial and ACP needs of anxious and depressed adults with metastatic cancer. The study evaluated M-ACT's acceptability, feasibility, and efficacy potential.
Design: The study was designed as a single-arm intervention development and pilot trial.
Setting/Subjects: The trial enrolled 35 anxious or depressed adults with stage IV cancer in community oncology clinics, with a referred-to-enrolled rate of 69% and eligible-to-enrolled rate of 95%.
Measurements: M-ACT alternated four in-person group sessions with three self-paced online sessions. Acceptability and feasibility were assessed through enrollment, attendance, and satisfaction ratings. Outcomes and theorized intervention mechanisms were evaluated at baseline, midintervention, postintervention, and two-month follow-up.
Results: Participant feedback was used to refine the intervention. Of participants starting the intervention, 92% completed, reporting high satisfaction. One-quarter did not begin M-ACT due to health declines, moving, or death. Completers showed significant reductions in anxiety, depression, and fear of dying and increases in ACP and sense of life meaning. In this pilot, M-ACT showed no significant impact on pain interference. Increases in two of three mechanism measures predicted improvement on 80% of significant outcomes.
Conclusions: The M-ACT intervention is feasible, acceptable, and shows potential for efficacy in community oncology settings; a randomized trial is warranted.
BACKGROUND: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking.
AIM: To evaluate perceived psychological support in relation to end-of-life decisions of neonatologists and nurses working in Flemish neonatal intensive care units and to analyse whether or not this support is sufficient.
DESIGN/PARTICIPANTS: A self-administered questionnaire was sent to all neonatologists and neonatal nurses of all eight Flemish neonatal intensive care units (Belgium) in May 2017. The response rate was 63% (52/83) for neonatologists and 46% (250/527) for nurses. Respondents indicated their level of agreement (5-point Likert-type scale) with seven statements regarding psychological support.
RESULTS: About 70% of neonatologists and nurses reported experiencing more stress than normal when confronted with an end-of-life decision; 86% of neonatologists feel supported by their colleagues when they make end-of-life decisions, 45% of nurses feel that the treating physician listens to their opinion when end-of-life decisions are made. About 60% of both neonatologists and nurses would like more psychological support offered by their department when confronted with end-of-life decisions, and 41% of neonatologists and 50% of nurses stated they did not have enough psychological support from their department when a patient died. Demographic groups did not differ in terms of perceived lack of sufficient support.
CONCLUSION: Even though neonatal intensive care unit colleagues generally support each other in difficult end-of-life decisions, the psychological support provided by their department is currently not sufficient. Professional ad hoc counselling or standard debriefings could substantially improve this perceived lack of support.
OBJECTIVES: To determine the satisfaction of relatives of deceased patients with the care received in a palliative care unit (PCU) and compare it with cases in which a team with specific psychological care were not involved.
MATERIAL AND METHODS: An anonymous survey (n=202) was administered to the relatives (response rate, 42.1%), which evaluated 9 issues related to the process of dying and the overall assessment of the care.
RESULTS: The overall satisfaction was high (mean score of 9.22); the score for the full team was 9.40, while that of the team without the psychologist was 8.40 (P=.005). The items that scored highest were "team availability", "information received" and "assistance for facing the disease", followed by "pain control", "peaceful death", "assistance for patient-family communication", "grief support" and "quality of life".
CONCLUSIONS: Based on the relatives' assessment, the hospital PCU teams help increase the quality of care at the end of life.
Palliative care (PC) is perhaps the most inherently interdisciplinary specialty within health care. Comprehensive PC is delivered by a core team of physicians, nurses, social workers, spiritual care providers, pharmacists, and others who address the broad range of medical, psychosocial, and spiritual needs of those living with serious illness. While PC clinicians are typically skilled in screening for distress, the best path to follow when patients screen positive for psychosocial distress or exhibit mental health challenges may not always be clear. This article brings together the perspectives of experienced social workers practicing across PC and hospice settings. It seeks to identify opportunities and rationale for the integration of palliative social work (PSW) in the provision of quality, person-centered, family-focused, and culturally congruent care for the seriously ill. Increasing recognition of the impact of social determinants of health highlights the critical importance of including PSW if we are to better understand and ultimately address the broad range of factors that influence people's quality of life.
OBJECTIVES: A goal of family-focused therapies in oncology is to help families communicate effectively about illness and its management. Yet there has been no examination of whether and how conjoint sessions are conducive to this process. In this study, we: (a) described the extent of cancer-specific communication during family sessions at the end of life; (b) identified characteristics associated with SC; (c) determined the association between SC and longer-term family bereavement outcomes.
METHODS: Data were collected as part of a randomized controlled trial of Family Focused Grief Therapy (FFGT) for advanced cancer patients and their families. Demographics, depressive symptoms and family functioning were assessed at baseline. Cancer-specific communication, perceived responsiveness to communication, and therapeutic alliances were reported after each session. At 13-months bereavement, surviving families were assessed for symptoms of depression and prolonged grief disorder (PGD).
RESULTS: Participants were 257 advanced cancer patients and family members receiving FFGT at the end of life. On average, participants perceived significantly more cancer-related communication in session (SC) than at baseline. Both therapist-family, and within-family alliances were associated with SC, especially for those with more severe depressive symptoms at baseline. Long-term outcomes were moderated by perceived responsiveness to in-session communication: for those who perceived high responsiveness, SC was associated with fewer depressive and PGD symptoms in bereavement.
CONCLUSIONS: Conjoint family sessions can effectively increase communication about cancer at the end of life. Clinicians should consider key contextual factors in their effort to facilitate this process: perceived responsiveness, family role, alliances with therapist and within-family.
CONTEXT: Palliative care encompasses an interdisciplinary team, including mental health care professionals, to address psychological distress of cancer patients.
OBJECTIVES: To present the implementation of an outreach counseling program via videoconferencing or telephone to patients receiving care in an outpatient palliative care clinic and to compare patients using this service to those who only received psychological counseling in our outpatient clinic.
METHODS: We conducted a retrospective chart review of cancer patients seen for psychology counseling services in an outpatient supportive care center between June 2015 and March 2017.
RESULTS: We reviewed 2072 unique patients (52% of the total patients seen at the outpatient Supportive Care Center), who had 4567 total counseling encounters across outreach and outpatient settings. A total of 452 (22%) patients participated in a combination of outpatient and outreach counseling services. Patients who participated in outreach services had significantly more encounters (311 [69%] had two to five sessions) compared with those who had outpatient services only (1137 [70%] had one session only) (P < .001). Outreach patients also had shorter times between the initial and follow-up encounters (median 14 days) compared with those who had outpatient services only (median 30 days) (P < .0001).
CONCLUSIONS: Outreach telehealth counseling services was found to enhance palliative care patient access to psychological counseling. These services represent an additional modality for providing continuous psychological care.
Narratives that frame the end of life with dementia as undignified reveal moral claims on which lives are considered worth living. These claims are deeply rooted in the medicalization of death and its appeal to dignity. Drawing from ethnographic fieldwork in nursing homes for people with dementia in The Netherlands, I demonstrate how the end of life with dementia is managed through such moral frames. Specifically, I elaborate on the production of lives (not) worth living and explore how family members welcomed the death of a loved one with dementia. I argue that the welcoming of death is not an act of indifference but can be seen as a form of care.