Diagnosis of a parent's cancer has a profound influence on the parent, the children and the child–parent relationship, and puts all family members at risk for psychological distress. This article describes the development and the first attempts at implementation of an intervention aimed at helping people cope with difficulties arising from being both parents and cancer patients.

Based on themes discussed in focus groups with parents coping with cancer and with professionals in the field, a four-module psychological intervention was developed. The modules are: Telling and Sharing, Children’ Responses, Routine and Changes, and Learning and Awareness as a Parent. The techniques used are mainly psycho-educational and cognitive–behavioral.

Preliminary experience showed this intervention to be more feasible as a one-day workshop than as a four-session intervention. Parents who participated in two workshops reported it to be helpful in empowering them as parents and in imparting learning tools for identifying their children's needs, as well as for communicating with their children.

Intervention tailored specifically for parents coping with cancer can be relevant for their special needs. Research is needed to establish the effectiveness of this intervention.

In the United Kingdom, a Four-Tier Model of Psychological Support has been recommended for all patients with cancer and their families. This model suggests that staff at Tier 2, such as nurses, doctors, and allied health professionals, should be proficient in screening for psychological distress and intervening with techniques such as psycho-education and problem solving. Research has suggested that although communication skills training is essential for staff working in cancer services, it does not necessarily improve the detection of specific psychological disorder or staff confidence in intervening with highly distressed patients. The objective was therefore to design a training program that addressed this deficit and was easily accessible to hospital staff.

Method:. A training package was developed to train staff in the recommended skills. A literature review of teaching modalities and the effectiveness of different formats was conducted. A four-session program was developed, to be administered by staff at Tiers 3 and 4 of the model, such as clinical psychologists and counsellors.

Over 3 years, 255 sets of data were collected from staff who attended the course. Precourse, postcourse, and 6-month follow-up data were collected through the use of confidence questionnaires, developed from the literature. The data show a significant improvement in staff confidence across all domains measured, including confidence in the detection and management of psychological distress (p =.0001).

Although the results have limitations and the data are subjective, we can conclude that this course significantly improves staff confidence in dealing with psychological distress and that this increased confidence is maintained over a 6-month follow-up period.

Studies on decisional capacity have primarily focused on cognitive disorders, whereas noncognitive disorders remain understudied. The purpose of our study was to assess decisional capacity across a wide spectrum of medical and psychiatric disorders.

More than 2,500 consecutive consults were screened for decisional capacity, and 336 consults were reviewed at Bellevue Hospital Center in New York. Sociodemographic and medical variables, medical and psychiatric diagnoses, as well as decisional capacity assessments were recorded and analyzed.

Consults for decisional capacity were most commonly called for in male patients with cognitive and substance abuse disorders. Less commonly, consults were called for patients with mood or psychotic disorders. Overall, about two thirds of patients (64.7%) were deemed not to have decisional capacity. Among medical diagnoses, neurological disorders contributed to decisional incapacity, and among the psychiatric diagnoses, cognitive disorders were most frequently documented in cases lacking decisional capacity (54.1%) and interfered more commonly with decisional capacity than substance abuse or psychotic disorders (37.2 and 25%). In contrast, patients with mood disorders usually retained their decisional capacity (32%). Generally, the primary treatment team's assessment was accurate and was confirmed by the psychiatric service.

Although decisional capacity assessments were most commonly requested for patients with substance abuse and cognitive disorders, the latter generally affected the ability to make healthcare decisions the most. Further, cognitive disorders were much more likely to impair the ability to make appropriate healthcare decisions than substance abuse or psychotic disorders.

To assess hopelessness, anxiety, depression, and quality of life in cancer patients undergoing palliative treatment by comparing their scores at the onset of treatment and one month later and by assessing possible correlations with coping strategies.

Participants included 85 patients of both genders (56.5% female) diagnosed with advanced cancer who did not have curative therapeutic options who were assessed with self-applied instruments (the Beck Hopelessness Scale, the European Organization for the Research and Treatment of Cancer Quality of Life Core Questionnaire–Cancer 30, the Hospital Anxiety and Depression Scale, and the Coping Strategies Inventory by Folkman and Lazarus) at two timepoints: first before their appointment with doctors and other professionals in their first visit to the palliative care outpatient clinic (PCOC) and then as soon as patients arrived at the PCOC for their first medical follow-up visit (approximately 30 days after the first appointment).

The scores for hopelessness, anxiety, and depression remained stable (p = 0.24). The results were the same for the quality-of-life (QoL) variables, except for the fatigue and pain scores, which decreased (p = 0.01), and social impairment, which increased (p = 0.03). Analysis of the correlations between the coping mechanisms used after the onset of palliative treatment showed that confronting coping, seeking social support, and positive reappraisal were inversely correlated with hopelessness. Seeking social support, planful problem solving, and positive reappraisal were inversely correlated with indicators of depression. In contrast, use of the escape–avoidance strategy and reduced use of the planful problem-solving strategy were associated with increased anxiety.

The employment of problem-focused coping strategies exerted a positive impact on the end-of-life process and, above all, protected patients from the negative experiences associated with psychiatric symptoms, thus enabling them to look for alternative solutions for experiencing the end-of-life process in a more well-adjusted manner.

A scoping research literature review on “bad death” was undertaken to assess the overall state of the science on this topic and to determine what evidence exists on how often bad deaths occur, what contributes to or causes a bad death, and what the outcomes and consequences of bad deaths are.

A search for English-language research articles was conducted in late 2016, with 25 articles identified and all retained for examination, as is expected with scoping reviews.

Only 3 of the 25 articles provided incidence information, specifying that 7.8 to 23% of deaths were bad and that bad deaths were more likely to occur in hospitals than in community-care settings. Many different factors were associated with bad deaths, with unrelieved pain being the most commonly identified. Half of the studies provided information on the possible consequences or outcomes of bad deaths, such as palliative care not being initiated, interpersonal and team conflict, and long-lasting negative community effects.

This review identified a relatively small number of research articles that focused in whole or in part on bad deaths. Although the reasons why people consider a death to be bad may be highly individualized and yet also socioculturally based, unrelieved pain is a commonly held reason for bad deaths. Although bad and good deaths may have some opposing causative factors, this literature review revealed some salient bad death attributes, ones that could be avoided to prevent bad deaths from occurring. A routine assessment to allow planning so as to avoid bad deaths and enhance the probability of good deaths is suggested.

We developed a specific cognitive–existential intervention to improve existential distress in nonmetastatic cancer patients. The present study reports the feasibility of implementing and evaluating this intervention, which involved 12 weekly sessions in both individual and group formats, and explores the efficacy of the intervention on existential and global quality of life (QoL) measures.

Some 33 nonmetastatic cancer patients were randomized between the group intervention, the individual intervention, and the usual condition of care. Evaluation of the intervention on the existential and global QoL of patients was performed using the existential well-being subscale and the global scale of the McGill Quality of Life (MQoL) Questionnaire.

All participants agreed that their participation in the program helped them deal with their illness and their personal life. Some 88.9% of participants agreed that this program should be proposed for all cancer patients, and 94.5% agreed that this intervention helped them to reflect on the meaning of their life. At post-intervention, both existential and psychological QoL improved in the group intervention versus usual care (p = 0.086 and 0.077, respectively). At the three-month follow-up, global and psychological QoL improved in the individual intervention versus usual care (p = 0.056 and 0.047, respectively).

This pilot study confirms the relevance of the intervention and the feasibility of the recruitment and randomization processes. The data strongly suggest a potential efficacy of the intervention for existential and global quality of life, which will have to be confirmed in a larger study.

The aim of this study was to illuminate experiences of finding meaning in life among spouses of people with amyotrophic lateral sclerosis.

Thirteen interviews were analyzed with qualitative content analysis.

The spouses were struggling for meaning at the end of a dark tunnel. They felt limited and isolated in their proximity to death. They lived imprisoned lives, felt lonely, considered life to be unfair and incomplete, and mourned the loss of their future. However, they found meaning despite the proximity of death through cherishing their own lives, fellowship, accepting the present, and believing in meaning after the partner's death.

Meaning in life strengthened spouses' well-being and ability to find pleasure in a difficult situation. It also strengthened their will to live after the partner's death. Limitations and isolations were strong predictors of what could impair their well-being and the possibility of finding meaning after the partner's death. Spouses need individual support throughout the disease process and after the partner's death, to give them the strength to find meaning in life and prioritize what is important for them. Paying attention to what might prevent them from finding meaning could make it easier to help them in their situation. Providing joint support to the patient and spouse might also help them to see each other's situation, come together, and help each other.

Self-reported sleep disturbance (SD) is a distressing symptom in patients with advanced cancer. There are limited data on the treatment of SD and predictors to response of SD to outpatient supportive care clinic (OPC) consultation. The aims of our study was to determine the frequency, intensity, and correlates of SD as assessed with the Edmonton Symptom Assessment System (ESAS) sleep item at the time of initial consultation and identify the predictors of improvement in SD at follow-up.

We reviewed the records of consecutive patients with advanced cancer presenting to the OPC. ESAS scores were obtained at the initial and subsequent visits between January 2008 and February 2010. All patients underwent screening for SD (0–10 scale: 0 = best sleep, presence of SD defined as ≥3) and interdisciplinary assessment and treatment, including drug review, counseling, sleep hygiene review, and drug therapy. A response was defined as a 1-point improvement at the follow-up visit on the Edmonton Symptom Assessment Scale (ESAS) sleep item score. Baseline patient characteristics, medication use, and ESAS scores were analyzed to determine their association with response.

The median age was 58 years, and 53% of patients were men. The most common cancer type was head and neck or lung (36%). Of the 442 patients, 330 had baseline SD (score ≥3/10, 75%). Median and mean (standard deviation) baseline SD scores were 5 and 5.1 (2.9). The multivariable regression model found the intensity of baseline ESAS sleep item scores to be associated with baseline sedative use, baseline ESAS pain scores, baseline ESAS fatigue scores, baseline ESAS feeling of well-being scores, and sedative use (R2 = 0.22). Sleep disturbance response at first follow-up was seen in 196 of 330 patients (59%). Moderate to high SD score and anxiety at initial visit with odds ratios (OR) of 2.53 (p = 0.0007) and 1.59 (p = 0.048), respectively, were associated with a response.

Both the frequency and severity of SD were high. Response to supportive care consultation was substantial. The severity of SD and anxiety at the initial visit predicted a response at first follow-up. Further research is needed.

Since February 2016, French Claeys-Leonetti law has recognized patients' right to confront incurable diseases with short-term prognosis and refractory physical or psychological or existential symptoms by requesting continuous deep sedation until death (CDSUD). Determining when psychological or existential distress is refractory and unbearable remains complex and controversial.

This review provides a comprehensive thought on CDSUD for advanced incurable patients with refractory psychological and/or existential distress in palliative care settings. It offers guidance on psychiatric or psychological diagnosis for explaining patients' requests for CDSUD.

A narrative literature review (2000–2019) was conducted on the MedLine search about the use of palliative sedation in cases of refractory psychological and/or existential distress.

(1) Definitions of “refractory symptom,” “refractory psychological distress,” and “refractory existential distress” are inconsistent; (2) alternative diagnoses might obscure or be obscured by psycho-existential distress; and (3) criteria on meanings, reasons for requests, decision-making processes, and functions are evolving in practice.

Before implementing CDSUD, palliative healthcare professionals should seek input from psycho-oncologists in palliative care. Mental health professionals should analyze and assess the reasons for psychological and/or existential distress, consider the intentionality processes of requests, and explore alternative diagnoses, such as depressive or adjustment disorders, demoralization syndrome, desire to hasten death, and desire for euthanasia. Therapeutic responses (e.g., pharmacological and psychotherapeutic) should be implemented before deciding that psycho-existential distress is refractory.

The diagnosis of terminal cancer begins one of the most complex and challenging individual experiences of human life that requires multiple coping responses, one of those being hope. There are few studies that provide descriptions of hope over time for adults, ages 20–59, with advanced stage cancer. The purpose of this study was to describe hope as defined and experienced by young and middle age adults with advanced stage cancer.

This descriptive, longitudinal qualitative research study interviewed 12 hopeful adults with advanced stage cancer once a month for 3 months.

By definition, this population exhibited high levels of hope at study entry. Hope scores did not change overtime. Four qualities associated with high levels of hope included: reliance on strong spiritual beliefs, maintenance of positive attitudes, accommodation of cancer symptoms, and the presence of supportive resource people. The emphasis or importance of each quality and specific hope related goals were determined and defined individually. Hope goals varied in degree of expectancy and concreteness and require reassessment as conditions change.

By identifying an individual's hope goals, palliative care clinicians can then plan and implement interventions to move toward that hope goal.

Delirium is a frequent and severe complication of serious pediatric illness. Development of a nonpharmacologic approach to prevent pediatric delirium may improve short- and long-term outcomes in children and their families. In this brief report, we describe the development of a quality improvement project designed to methodically promote the family member's engagement, comforting, and orienting activities with their critically ill child to decrease delirium rates.

We created a developmentally specific Delirium Prevention Toolkit for families. In a feasibility pilot, March through June 2016, we offered the kit to 15 patients and their families. On discharge, families were asked to describe use of the toolkit and whether or not it was helpful for them.

Twelve of 15 patients and families used various elements of the toolkit, particularly the headphones, music, and games; no one regularly used the blank journal. All reported that it was easy and helpful to have as support for their stay in the pediatric intensive care unit.

This pilot demonstrated practicality of a nonpharmacologic delirium prevention toolkit in the pediatric intensive care unit, and satisfaction from patients and families.

To improve the palliative care and more effectively meet the needs of young patients and their families at the end of life, the authors investigated the place of death of adolescents and young adults treated in their institution and identified some of the factors influencing the choice of place of death.

The parents and/or partners of adolescents and young adults (15 to 25 years old) who died at Institut Curie (cancer center) between 2000 and 2003 were contacted. Twenty-one families agreed to participate in the interview between October 2005 and April 2006. Analysis of the interviews comprised a descriptive part and a thematic part.

Nineteen out of 21 (90%) families declared that they did not really choose their child's place of death due to lack of time. However, all families said that they preferred the hospital. No family attended a bereavement group after their child's death and only 3 families (14%) consulted a mental health care professional. Thematic analysis showed that representations and beliefs concerning life and death at least partly determined the family's capacity to discuss the place of death with their child.

Although progress has been made over recent years in France, there is still considerable room for improvement of palliative care to more effectively meet the needs of young patients and their families at the end of life.

Although hospice agencies are required to provide informal caregivers (family or friends of the patient) with formal bereavement support when their loved one passes, most bereavement interventions lack standardization and remain untested. We employed the Dual Processing Model of Bereavement as a theoretical framework for assessing the potential of a secret Facebook group for bereaved hospice caregivers.

A mixed-methods approach was utilized to analyze online communication (posts and comments) in the secret Facebook group, and self-reported outcome measures on depression and anxiety were compared pre- and post-intervention.

Sixteen caregivers participated in the secret Facebook group over a period of nine months. The majority of online talk was oriented to restoration, revealing abrupt and anticipated triggers that evoked feelings of loss. Caregivers also shared loss orientation through storytelling, sharing and giving advice, and encouraging others to manage the challenges of coping. Caregiver anxiety and depression were lower after the intervention.

This pilot study provides insight into the use of a secret Facebook group to facilitate bereavement support to caregivers. Findings highlight the promise of Facebook for hospice bereavement support. Providers and researchers are encouraged to explore the positive outcomes associated with bereavement support.

End-of-life (EoL) communication in long-term care (LTC) homes is often inadequate and delayed, leaving residents dying with unknown preferences or goals of care. Poor communication with staff contributes to families feeling unprepared, distressed, and dissatisfied with care. Family care conferences (FCCs) aim to increase structured systematic communication around goals and plans for the end of life. As part of the Strengthening a Palliative Approach to Care (SPA–LTC) project, FCCs were implemented in four LTC sites in Ontario, Canada. The purpose of this substudy was to examine FCC content and such guiding processes as documentation and multidisciplinary staff participation.

A total of 24 FCCs were held for residents with a Palliative Performance Scale score of 40% (nearing death). Data were collected from conference forms (i.e., Family Questionnaires, Care Plan Conference Summaries), site-specific electronic chart documents, and fieldnotes. Directed content analysis of data was informed by the Canadian Hospice Palliative Care Association's Square of Care Model, which describes eight domains of care: disease management, physical, psychological, social, practical, spiritual, EoL, and loss/bereavement.

The FCCs addressed an average of 71% of the content domains, with physical and EoL care addressed most frequently and loss/bereavement addressed the least. Two goals and five interventions were documented and planned on average per FCC. Examination of the processes supporting EoL communication found: (1) advantages to using FCC forms versus electronic charts; and (2) high levels of multidisciplinary participation overall but limited participation of personal support workers (PSWs) and physicians.

Communication around the end of life in LTC can be supported through the use of FCCs. Description of content and FCC processes provides guidance to persons implementing FCCs. Recommendations for tailoring conferences to optimize communication include use of specific conference forms, increased bereavement discussion, and further engagement of PSWs and physicians.

The Bereavement Risk Assessment Tool (BRAT) was designed to consistently communicate information affecting bereavement outcomes; to predict the risk for difficult or complicated bereavement based on information obtained before the death; to consider resiliency as well as risk; and to assist in the efficacy and consistency of bereavement service allocation. Following initial development of the BRAT's 40 items and its clinical use, this study set out to test the BRAT for inter-rater reliability along with some basic validity measures.

Case studies were designed based on actual patients and families from a hospice palliative care program. Bereavement professionals were recruited via the internet. Thirty-six participants assessed BRAT items in 10 cases and then estimated one of 5 levels of risk for each case. These were compared with an expert group's assignment of risk.

Inter-rater reliability for the 5-level risk scores yielded a Fleiss’ kappa of 0.37 and an intra-class correlation (ICC) of 0.68 (95% CI 0.5-0.9). By collapsing scores into low and high risk groups, a kappa of 0.63 and an ICC of 0.66 (95% CI 0.5-0.9) was obtained. Participant-estimated risk scores yielded a kappa of 0.24. Although opinion varied on the tool's length, participants indicated it was well organized and easy to use with potential in assessment and allocation of bereavement services. Limitations of the study include a small sample size and the use of case studies. Limitations of the tool include the subjectivity of some items and ambiguousness of unchecked items.

The collapsed BRAT risk levels show moderately good inter-rater reliability over clinical judgement alone. This study provides introductory evidence of a tool that can be used both prior to and following a death and, in conjunction with professional judgment, can assess the likelihood of bereavement complications.

Our aim was to describe the clinical evolution and needs of children with spinal muscular atrophy type I treated in a domiciliary palliative care program.

We undertook a retrospective chart review of nine consecutive patients. Descriptions of the clinical and demographic profile of children with spinal muscular atrophy (SMA) type I were referred to a pediatric palliative care team (PPCT).

Six males and three females were admitted to the PPCT, all before six months of age, except for one afflicted with SMA type I with respiratory distress. The median time of attention was 57 days (range 1–150). The domiciliary attention mainly consisted of respiratory care. The patient with SMA type I with respiratory distress required domiciliary mechanical ventilation by tracheotomy. In all cases, a nasogastric tube (NT) was indicated. As end-of-life care, eight required morphine to manage the dyspnea, four received it only by enteral (oral or NT) administration, and four received it first by enteral administration with continuous subcutaneous infusion (CSI) later. Three of the four patients with CSI also received benzodiazepines. While they were attended by the PPCT, none required hospital admission. All the patients died at home except for the one attended to for just one day.

Domiciliary care for these patients is possible. The respiratory morbidity and its management are the main issues. Application of an NT is useful to maintain nutritional balance. Morphine administration is necessary to manage the dyspnea. Palliative sedation is not always necessary.

The working ages (25–65 years) are a period when most people have significant work, financial, and family responsibilities. A small proportion of working age people will face an expected premature death from cancer or other life-limiting illness. Understanding the impact an expected premature death has on this population is important for informing support. The current study set out to summarize research describing the effects that facing an expected premature death has on employment, financial, and lifestyle of working age people and their families.

A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment, and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children.

Fifteen quantitative and 12 qualitative studies were included. Two-thirds (n = 18) were focused on cancer. All studies identified adverse effects on workforce participation, finances, and lifestyle. Many patients were forced to work less or give up work/retire early because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with nonmalignant disease.

Working age people facing an expected premature death and their families have significant unmet financial, employment, and lifestyle needs. Comparing and contrasting their severity, timing, and priority for people with nonmalignant conditions is required to better understand their unique needs.