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 current study explores the relationship between attachment styles, social support, gender and finding meaning in caregiving among spousal caregivers of colorectal cancer patients.

Sixty caregivers (30 men and 30 women) were administered questionnaires assessing attachment styles, social support and finding meaning in caregiving, using a cross-sectional design.

For male caregivers avoidance attachment is associated with their finding meaning, whereas for female caregivers social support is associated with their finding meaning.

Psychological interventions for caregivers should take into consideration gender differences and might benefit from addressing the process of finding meaning in caregiving.

The Korean advance directive (K–AD) comprises a value statement, treatment directives, preferences for cardiopulmonary resuscitation (CPR), artificial ventilation, tube feeding, and hospice care, as well as a proxy appointment. The K–AD can facilitate a patient's decision making with respect to end-of-life (EoL) care. The present study aimed to examine the extent to which patient–caregiver dyads would use the K–AD and agree on EoL care decisions.

Using a descriptive study design, 81 cancer patients were invited to participate. The final sample consisted of 44 patient–caregiver dyads who completed survey questionnaires, including the K–AD. One patient did not complete all parts of the questionnaire, and 36 (44.4%) declined to participate. Content analysis was conducted to examine the K–AD value statements. Cohen's kappa coefficient was calculated to determine the degree of patient–caregiver dyadic agreement on K–AD treatment directives (Sudore & Fried, 2010).

Our patient participants had the following cancer diagnoses: colorectal 29.5%, breast 29.5%, and liver/biliary tract cancers, 15.9%. Half of the sample had advanced-stage disease. Spouses (70.5%) or adult children (20.4%) were the primary caregivers, with perceived bonding rated as fair (31.8%) or good (65.9%). Rejection of the K–AD was mainly due to the difficulty involved in deciding on EoL care (50%). Comfort while dying was the most common theme expressed by patients (73.8%) and caregivers (66.7%). In terms of treatment directives, dyads advocated for hospice care (66.7%) and reduced support for aggressive treatments of CPR or artificial ventilation. The use of CPR (κ = 0.43, p = 0.004) and artificial ventilation (κ = 0.28, p = 0.046) showed significantly mild to moderate concordance among the dyads. Some 16 of the 21 dyads identified their spouses as a proxy, with others designating their adult children.

The degree of patient–caregiver concordance on the K–AD seemed applicable, and achieved mild to moderate concordance. Our findings are exploratory but suggest the need for EoL discussions where patient–caregiver dyads are encouraged to participate in EoL care decision making.

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.

The purpose of this study is to describe the post-treatment goals of colorectal cancer (CRC) survivors. We sought to determine whether goals were a salient concept during the period immediately following treatment, and whether a goal-setting intervention might be feasible and acceptable to these patients.

Semi-structured qualitative interviews were administered to a convenience sample of 41 CRC patients who were 0–24 months post-treatment. Topics discussed included expectations and goals for future health, cancer prevention awareness, health-promoting behavior-change goals, and post-treatment cancer issues. Content analysis was used to explore emergent themes.

Overall, participants’ health-related goals were: being healthy, getting back to normal, and not having a cancer recurrence. Most of the CRC survivors reported being proactive with their health by maintaining healthy behaviors or making healthy behavior changes, or had goals to change their behavior. All respondents had plans to maintain follow-up care and regular screening appointments. Some patients were managing treatment side effects or non-cancer issues that limited their functional abilities. Many respondents were satisfied with the care they received, and felt it was now their responsibility to do their part in taking care of themselves.

CRC survivors talk about goals, and many of them are either making or have an interest in making health behavior changes. Self-management support could be an appropriate strategy to assist patients with achieving their health goals post-treatment. Patients may need help addressing lingering treatment side effects or non-cancer issues. Healthcare providers should consider assessing patients’ goals to help patients resolve post-treatment issues and promote healthy behaviors.

Asia's first national advance care planning (ACP) program was established in Singapore in 2011 to enhance patient autonomy and self-determination in end-of-life (EoL) care decision-making. However, no known study has examined the extent to which ACP in Singapore successfully met its aims. The purpose of the current study was to examine the attitudes of local healthcare professionals on patients’ autonomy in decision-making at the EoL since they strongly influence the extent to which patient and family wishes are fulfilled.

Guided by the Interpretive-Systemic Framework and Proctor's conceptual taxonomy of implementation research outcomes, an interview guide was developed. Inquiries focused on healthcare professionals’ attitudes towards ACP, their clinical experiences working with patients and families, and their views on program effectiveness. Sixty-three physicians, nurses, medical social workers, and designated ACP coordinators who were actively engaged in ACP facilitation were recruited from seven major hospitals and specialist centers in Singapore through purposive sampling. Twelve interpretive-systemic focus groups were conducted, recorded, transcribed, and analyzed using a thematic analysis.

The extent to which patients in Singapore can exert autonomy in EoL care decision-making is influenced by five themes: (i) collusion over truth-telling to patient, (ii) deferment of autonomy by patients, (iii) negotiating patient self-determination, (iv) relational autonomy as the gold standard and (v) barriers to realization of patient choices.

Healthcare practitioners in Asian communities must align themselves with the values and needs of patients and their family and jointly make decisions that are consistent and congruent with the values of patients and their families. Sensitivity towards such cross-cultural practices is key to enhancing ACP awareness, discourse, and acceptability in Asian communities.

Lung cancer (LC) patients have shown a predisposition for developing emotional and physical symptoms, with detrimental effects on the quality of life (QoL). This study evaluates the bidirectional relationship between main psychological disorders and clinical/sociodemographic factors with the QoL.

In this observational cross-sectional study, patients with a confirmed LC diagnosis from February 2015 to March 2018 were eligible for this study. Each participant completed screening instruments of anxiety, depression, distress, and QoL assessment. Other relevant clinical data were extracted from electronic health records. Then comparisons, correlations, and logistic regression analyses were performed.

Two hundred and four cases were eligible; of them, the median age was 61 (24–84) years, most had clinical stage IV (95%), and most were under first-line therapy (53%). Concerning psychological status, 46% had symptoms of emotional distress, 35% anxiety, and 31% depression. Patients with psychological disorders experienced a worse global QoL than those without psychological impairment (p < 0.001). Increased financial issues and physical symptoms, combined with lower functioning, were also significantly associated with anxiety, depression, and distress. In the multivariate analysis, female sex and emotional distress were positively associated with an increased risk of depression; likewise, female sex, low social functioning, insomnia, and emotional distress were associated with anxiety.

Emotional symptoms and QoL had a significant bidirectional effect on this study; this underscores the necessity to identify and treat anxiety, depression, and distress to improve psychological well-being and the QoL in LC patients.

The objective of this study was to explore and contrast the experience and meaning of breathlessness in patients with chronic obstructive pulmonary disease (COPD) or lung cancer at the end of life.

We conducted a qualitative study embedded in a longitudinal study using topic-guided in-depth interviews with a purposive sample of patients suffering from breathlessness affecting their daily activities due to advanced (primary or secondary) lung cancer or COPD stage III/IV. All interviews were audiotaped, transcribed verbatim, and analyzed using framework analysis.

Ten COPD and eight lung cancer patients were interviewed. Both groups reported similarities in their experience. These included exertion through breathlessness throughout the illness course, losses in their daily activities, and the experience of breathlessness leading to crises. The main difference was the way in which patients adapted to their particular illness experience and the resulting crises over time. While COPD patients more likely sought to get their life with breathlessness under control, speaking of daily living with breathlessness under certain conditions, the participating lung cancer patients often faced the possibility of death and expressed a need for security.

Breathlessness leads to crises in patients with advanced disease. Although experiences of patients are similar, reactions and coping mechanisms vary and are more related to the disease and the stage of disease.

Research suggests that the strength of the relationship between body image and emotional distress decreases with age. Past research has focused on expected aging-related body changes, and has not yet examined unexpected body changes (e.g., breast cancer surgery). The present post-hoc study assessed relationships between age, body image, and emotional distress in women facing breast cancer surgery.

Older (≥65 years, n = 40) and younger (<65 years, n = 40) women were matched on race/ethnicity, marital status, and surgery type. Within one week prior to surgery, participants completed measures of demographics, aspects of body image, and emotional distress (general and surgery-specific).

Results indicated that: (1) body image did not differ by age (p > 0.999); (2) older women reported less pre-surgical emotional distress than younger women (p's < 0.01); and, (3) age moderated the relationship between body image and emotional distress (p's < 0.06).

The results suggest that younger women, particularly those with poor body image, are at an increased risk for pre-surgical emotional distress. These women may benefit from pre-surgical interventions designed to improve body image or to reduce pre-surgical emotional distress.

Burnout is reportedly high among oncology healthcare workers. Psychosocial oncologists may be particularly vulnerable to burnout. However, their work engagement may also be high, counteracting stress in the workplace. This study aimed to document the prevalence of both burnout and work engagement, and the predictors of both, utilizing the job demands–resources (JD–R) model, within a sample of psychosocial oncologists.

Psychosocial-oncologist (N = 417) clinicians, recruited through 10 international and national psychosocial-oncology societies, completed an online questionnaire. Measures included demographic and work characteristics, burnout (the MBI–HSS Emotional Exhaustion (EE) and Depersonalization (DP) subscales), the Utrecht Work Engagement Scale, and measures of job demands and resources.

High EE and DP was reported by 20.2 and 6.6% of participants, respectively, while 95.3% reported average to high work engagement. Lower levels of job resources and higher levels of job demands predicted greater burnout, as predicted by the JD–R model, but the predicted interaction between these characteristics and burnout was not significant. Higher levels of job resources predicted higher levels of work engagement.

Burnout was surprisingly low and work engagement high in this sample. Nonetheless, one in five psychosocial oncologists have high EE. Our results suggest that both the positive (resources) and negative (demands) aspects of this work environment have an on impact burnout and engagement, offering opportunities for intervention. Theories such as the JD–R model can be useful in guiding research in this area.

Family-centered care provides family members with basic needs, which includes information, reassurance, and support. Though national guidelines exist, clinical adoption often lags behind in this area. The Geisinger Health System developed and implemented a program for reliable delivery of best practices related to family communication to patients and families admitted to the intensive care unit (ICU).

Using a quasiexperimental study design and the 24-item Family Satisfaction in the Intensive Care Unit questionnaire (FSICU–24©) to determine family satisfaction, we measured the impact of a “family communication pathway” facilitated by tools built into the electronic health record on the family satisfaction of neurosurgical patients admitted to the ICU.

There was no statistically significant difference noted in family satisfaction as determined by FSICU–24 scores, including the Care and Decision Making constructs between the pre- and post-intervention pilot population. The percentage of families reporting the occurrence of a family conference showed only minimal improvement, from 46.5% before to 52.5% following the intervention (p = 0.565). This was mirrored by low numbers of documented family conferences by providers, suggesting poor uptake despite buy-in, use of electronic checklists, and repeated attempts at education.

This paper reviews the challenges to and implications for implementing national guidelines in the area of family communication in an ICU coupled with the principles of clinical reengineering.

The death of a child from cancer is an intense and life-changing loss for a parent. Guided by the principles of patient- and family-centered care, hospital-based caregivers developed a program to provide bereavement support for parents through phone calls and mailings. The aim of the present qualitative phenomenological study was to understand how parents experienced participating in this bereavement program.

A total of eight parents from six families participated in a focus-group evaluation of the two-year hospital-based bereavement program. Two social work clinicians/researchers independently analyzed the transcript of the focus group to define themes.

Four themes were identified: (1) lived experience of grief, (2) importance of relationships with the hospital-based team, (3) bereavement support from hospital-based providers, and (4) extending bereavement care.

Participants indicated the value of ongoing communication and connection with members of the healthcare team, who were often central to a family's life for years during their child's cancer treatment. Parents also provided suggestions for extending bereavement support through continued contact with providers and informal annual gatherings, as well as through a peer (parent-to-parent) support program.

The aim of this study was to investigate the primary concerns of terminally ill cancer patients in a Short-Term Life Review among Japanese, Koreans, and Americans to develop intervention programs to be tailored to patients in other countries.

Twenty Japanese, 16 Korean, and 7 American terminally ill cancer patients who were in the hospice wards of general Christian hospitals in each country participated in this study. Medical staff members (nurses, social workers, clinical psychologists) performed Short-Term Life Review Interviews with each patient. Patients reviewed their lives in the first session, the interviewers made simple albums for each patient in the week following the first session, and patients and interviewers then confirmed the contents of the album. The treatment period was 1 week. Measurement instruments included the Functional Assessment Chronic Illness Therapy–Spiritual (FACIT-Sp) and the Hospital Anxiety and Depression Scale (HADS). The contents of each interview session were transcribed, and correspondence analysis and a significance test were conducted on these data to select characteristic words or phrases.

Using the FACIT-Sp scores, the following concerns were chosen, in descending order of frequency. In Japan, primary concerns consisted of such ideas as “good human relationships and transcendence,” “achievements and satisfaction,” “good memories and important things,” and “bitter memories.” In Korea, “religious life,” “right behavior for living,” “strong consideration for children and will,” and “life for living” were primary concerns. In the United States, “love, pride, will to children,” “good, sweet memories,” and “regret and a feeling of loss” were primary concerns.

We clarify the differences among the primary concerns from the Short-Term Life Reviews, arguing that we can improve the spiritual well-being of terminally ill cancer patients by focusing on the primary concerns within each country.