INTRODUCTION: Talking about death and dying is evoking discomfort in many persons, resulting in avoidance of this topic. However, end-of-life discussions can alleviate distress and uncertainties in both old and young adults, but only a minority uses this option in palliative care. Even in healthy populations, talking about death is often seen as alleviative and worthwhile, but rarely initiated.
OBJECTIVE: To investigate different psychological interventions (a) encouraging the readiness for end-of-life discussions and (b) changing death attitudes in healthy adults of different ages.
METHODS: 168 participants were randomized to four different interventions (IG1: value-based intervention with end-of-life perspective, IG2: motivation-based intervention with end-of-life perspective, IG3: combination of IG1 and IG2, CG: control group). Primary outcome was the readiness to engage in end-of-life topics. Secondary outcomes were fear of death, fear of dying and death acceptance. Assessments took place before, directly after the intervention and at 2 weeks of follow up.
RESULTS: IG2 and IG3 reported significantly more changes in the readiness to engage in end-of-life discussions than the CG (F[5.61, 307] = 4.83, p < 0.001, ηp2 = 0.081) directly after the intervention. The effect of IG3 remained stable at the follow-up. There were no significant effects of the interventions on end-of-life fears or death acceptance. Acceptability of the interventions was very high.
CONCLUSIONS: Short interventions can be useful to encourage end-of-life discussions and could be integrated in health care programs. The efficacy and effectiveness of these short interventions in palliative patients are currently examined.
OBJECTIVE: Parents often feel ill-equipped to prepare their dependent children (<18 years old) for the death of a parent, necessitating support from professionals. The aim of this study is to explore health and social care professionals' (HSCPs) experiences and perceptions of providing supportive care to parents regarding their children, when a parent is dying from cancer.
METHODS: Semi-structured qualitative interviews were conducted with 32 HSCPs, including nurses, allied health professionals, social workers and doctors from specialist or generalist roles, across acute or community sectors.
RESULTS: HSCPs' perceptions of the challenges faced by many families when a parent is dying from cancer included: parental uncertainties surrounding if, when and how to tell the children that their parent was dying, the demands of managing everyday life, and preparing the children for the actual death of their parent. Many HSCPs felt ill-equipped to provide care to parents at end of life concerning their children. The results are discussed under two themes: (1) hurdles to overcome when providing psychological support to parents at end of life and (2) support needs of families for the challenging journey ahead.
CONCLUSIONS: There appears to be a disparity between HSCPs' awareness of the needs of families when a parent is dying and what is provided in practice. HSCPs can have a supportive role and help equip parents, as they prepare their children for the death of their parent. Appropriate training and guideline provision could promote this important aspect of end of life care into practice.
Limited evidence suggests carers of people with pulmonary fibrosis (PF) have a variety of information and support needs. This pilot focus group discussion, carried out in 2019, aimed to explore the needs of carers of people with pulmonary fibrosis and evaluate the impact of a UK hospice PF carers’ support group. Analysis revealed: (1) loneliness and connection, (2) negotiating with and motivating their loved-ones, and (3) the importance of the best environment for support as key themes. Participants reported a need for both practical and emotional support with the carers’ own health sometimes neglected. This evaluation concluded that peer support specifically with other PF carers was hugely valuable to the participants, as was the hospice environment itself. It is recommended that PF-specific carer support is considered when designing services for people with pulmonary fibrosis.
While hospitals remain the most common place of death in many western countries, specialised palliative care (SPC) at home is an alternative to improve the quality of life for patients with incurable cancer. We evaluated the cost-effectiveness of a systematic fast-track transition process from oncological treatment to SPC enriched with a psychological intervention at home for patients with incurable cancer and their caregivers.
Background: Ongoing assessment of psychological reaction to illness in palliative and end of life care settings is recommended, yet validated tools are not routinely used in clinical practice. The Distress Thermometer is a short screening tool developed for use in oncology, to detect individuals who would benefit from further psychological assessment. However the optimal cut-off to detect indicative psychological morbidity in patients with advanced cancer receiving specialist palliative care is unclear.
Aim: To provide the first validation of the Distress Thermometer in an advanced cancer population receiving specialist palliative care in a UK hospice setting.
Design: Receiver Operating Characteristics analysis was used to compare the sensitivity and specificity of cut-offs indicative of psychological morbidity on the Distress Thermometer in comparison to the Hospital Anxiety and Depression Scale.
Setting/Participants: Data were derived from 202 patients with advanced cancer who were approached on admission to inpatient or day hospice care, with 139 patients providing complete data on both measures.
Results: The area under the curve was optimal using a Distress Thermometer cut-off score of >=6 for total distress and for anxiety, and a cut-off score of >=4 optimal when screening for depression.
Conclusions: The Distress Thermometer is a valid, accurate screening tool to be used in advanced cancer but with caution in relation to the lack of specificity. With little variation between the area under the curve scores, arguably a Distress Thermometer cut-off score of >=5 is most appropriate in screening for all types of psychological morbidity if sensitivity is to be prioritised.
This pilot study examined the effects of Brief Problem-Solving Therapy on caregiver quality of life, depression, and problem-solving in family caregivers of hospice patients. Thirty-seven family caregivers to home-based hospice patients (mean age 62.8 [SD = 12.32]) were randomized to the study group (PST-Hospice), for a 45 minute per week/5 week intervention or comparison group of usual care plus caregiver education (UC + CE). The severity of depressive symptoms, caregiver quality of life and problem-solving functioning were assessed at baseline and follow-up. At post-test, the PST-Hospice condition had significantly higher scores on caregiver quality of life compared to UC + CE. On the Social Problem Solving Inventory-Revised Short Form (SPSI-R) measure, PST-Hospice scores clinically improved as compared to UC + CE on Positive Problem Orientation and Rational Problem-Solving subscales. In addition, this pilot study found that brief problem-solving treatment delivered by a hospice social worker appears to be an acceptable and feasible tool for routine use in the home-hospice setting.
Background: Palliative care is a modality of treatment that addresses physical, psychological and spiritual symptoms. Dignity therapy, a form of psychotherapy, was developed by Professor Harvey Chochinov, MD in 2005.The aim of the study was to assess the effect of one session of dignity therapy on quality of life in advanced cancer patients.
Methods: This was a randomized control trial of 144 patients (72 in each arm) randomized into group 1 (intervention arm) and group 2 (control arm). Baseline ESAS scores were determined in both arms following which group 1 received Dignity therapy while Group 2 received usual care only. Data collected was presented as printed (Legacy) documents to group 1 participants. These documents were a summary of previous discussions held. Post intervention ESAS scores were obtained in both groups after 6 weeks. Analysis was based on the intention to treat principle and descriptive statistics computed. The main outcome was symptom distress scores on the ESAS (summated out of 100 and symptom specific scores out of 10). The student T-test was used to test for difference in ESAS scores at follow up and graphs were computed for common cancers and comorbidities.
Results: Of the 144 (72 patients in each arm) patients randomized, 70% were female while 30% were male with a mean age of 50 years. At 6 weeks, 11 patients were lost to follow up, seven died and 126 completed the study. The commonly encountered cancers were gastrointestinal cancers (43%, p = 0.29), breast cancer (27.27% p = 0.71) and gynaecologic cancers (23% p = 0.35). Majority of the patients i.e. 64.3% had no comorbidities.
The primary analysis results showed higher scores for the DT group (change in mean = 1.57) compared to the UC group (change in mean = - 0.74) yielding a non-statistically significant difference in change scores of 1.44 (p = 0.670; 95% CI - 5.20 to 8.06). After adjusting for baseline scores, the mean (summated) symptom distress score was not significant (GLM p = 0.78). Dignity therapy group showed a trend towards statistical improvement in anxiety (p = 0.059). The largest effects seen were in improvement of appetite, lower anxiety and improved wellbeing (Cohen effect size 0.3, 0.5 and 0.31 respectively).
Conclusion: Dignity therapy showed no statistical improvement in overall quality of life. Symptom improvement was seen in anxiety and this was a trend towards statistical significance (p = 0.059).
This study aims to analyse the impact that a psychological intervention programme has on the emotional state of family caregivers of patients at the end of life. The study is longitudinal with two arms (control and experimental). Data was collected from 154 primary family caregivers of patients at the end of life as well as from their respective 154 care-recipients. The intervention programme has shown its effectiveness in reducing anxiety, emotional distress and burden in the family caregivers of end-of-life patients. A reduction of anxiety of patients whose family caregivers participated in the intervention was also observed.
Context: There has been increasing evidence of the role of mindfulness-based interventions in improving various health conditions. However, the evidence for the use of mindfulness in the palliative care setting is still lacking.
Objectives: The objective of our study was to determine the efficacy of a single session of 20 min mindful breathing in alleviating multiple symptoms in palliative care.
Methods: Adult palliative care in patients with at least one symptom scoring =5/10 based on the Edmonton Symptom Assessment Scale (ESAS) were recruited from September 2018 to December 2018. Recruited patients were randomly assigned to either 20 min mindful breathing and standard care or standard care alone.
Results: Forty patients were randomly assigned to standard care plus a 20 min mindful breathing session (n=20) or standard care alone (n=20). There was statistically significant reduction of total ESAS score in the mindful breathing group compared with the control group at minute 20 (U=98, n 1 = n 2 = 20, mean rank 1 = 15.4, mean rank 2 = 25.6, median reduction 1 = 6.5, median reduction 2 = 1.5, z=-2.763, r=0.3, p=0.005).
Conclusion: Our results provided evidence that a single session of 20 min mindful breathing was effective in reducing multiple symptoms rapidly for palliative care patients.
As the COVID-19 pandemic wears on, its psychological, emotional, and existential toll continues to grow and indeed may now rival the physical suffering caused by the illness. Patients, caregivers, and health-care workers are particularly at risk for trauma responses and would be well served by trauma-informed care practices to minimize both immediate and long-term psychological distress. Given the significant overlap between the core tenets of trauma-informed care and accepted guidelines for the provision of quality palliative care (PC), PC teams are particularly well poised to both incorporate such practices into routine care and to argue for their integration across health systems. We outline this intersection to highlight the uniquely powerful role PC teams can play to reduce the long-term psychological impact of the COVID-19 pandemic.
BACKGROUND: To assure patient-centred end-of-life care, palliative interventions need to account for patients' preferences. Advance care planning (ACP) is a structured approach that allows patients, relatives and physicians to discuss end-of-life decisions. Although ACP can improve several patient related outcomes, the implementation of ACP remains difficult. The col-ACP-study (collaborative advance care planning) will investigate a new ACP procedure (col-ACP-intervention (German: Hand-in-Hand Intervention)) in palliative cancer patients and their relatives that addresses individual values and targets barriers of communication before an ACP process.
METHODS: In a randomised controlled trial, 270 cancer patients without curative treatment options and their relatives will receive either 1) col-ACP 2) a supportive intervention (active control group) or 3) standard medical care (TAU). col-ACP comprises two steps: a) addressing various barriers of patients and relatives that discourage them from discussing end-of-life issues followed by b) a regular, structured ACP procedure. The col-ACP-intervention consists of 6 sessions. Primary endpoint is the patients' quality of life 16 weeks after randomisation. Secondary endpoints include measurements of distress; depression; communication barriers; caregivers' quality of life; existence of ACP or advance directives; the consistence of end of life care; and others. Patients will be followed up for 13 months. Multivariate analyses will be carried out. Qualitative evaluation of the intervention will be conducted.
DISCUSSION: Augmentation of a regular ACP program by a structured psycho-oncological intervention is an innovative approach to target barriers of communication about end-of-life issues. Study findings will help to understand the value of such a combined intervention in palliative care.
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.