Little is known about the effectiveness of advance care planning in the United Kingdom, although policy documents recommend that it should be available to all those with life-limiting illness.

An exploratory patient preference randomized controlled trial of advance care planning discussions with an independent mediator (maximum three sessions) was conducted in London outpatient oncology clinics and a nearby hospice. Seventy-seven patients (mean age 62 years, 39 male) with various forms of recurrent progressive cancer participated, and 68 (88%) completed follow-up at 8 weeks. Patients completed visual analogue scales assessing perceived ability to discuss end-of-life planning with healthcare professionals or family and friends (primary outcome), happiness with the level of communication, and satisfaction with care, as well as a standardized measure of anxiety and depression.

Thirty-eight patients (51%) showed preference for the intervention. Discussions with professionals or family and friends about the future increased in the intervention arms, whether randomized or preference, but happiness with communication was unchanged or worse, and satisfaction with services decreased. Trial participation did not cause significant anxiety or depression and attrition was low.

A randomized trial of advance care planning is possible. This study provides new evidence on its acceptability and effectiveness for patients with advanced cancer.

The psycho-social needs of patients with advanced chronic illness and their families include emotional, spiritual, and bereavement care. With a funding initiative by the La Caixa Foundation and design by the WHO Collaborating Center, we developed and implemented a program for the comprehensive care of terminally-ill individuals and their families, in Spain. The intent was to improve the psycho-social and spiritual dimensions of care, to generate experience and evidence, to explore models, and to act as catalyst in the Spanish National Strategy for Palliative Care.

We reviewed the process of design, implementation, and initial evaluation of the program at 18 months.

Thirty psycho-social teams’ (PST) acting as support teams projects were initiated. There were 120 full-time healthcare professionals appointed (58% clinical psychologists). These professionals received training through a comprehensive postgraduate course, and all used the same documentation. Some results were collated 18 months post-implementation. The total number of patients attended to was 10,954, and the number of relatives was 17,715. The preliminary clinical outcomes show a significant improvement in well-being, and a decrease in anxiety and insomnia, although there was a smaller impact on alleviating depression. Healthcare professionals collated results on satisfaction with palliative care (PC) services.

Based on these preliminary results, we suggest that the PST can be a model of organization that is effective and efficient in improving the psycho-social and spiritual aspects of care of terminally ill patients. Further follow-up and evaluation with validated tools are the main goals for the immediate future.

Qualitative analyses suggest that requests for physician-assisted death (PAD) may often be the culmination of a person's lifelong pattern of concern with issues such as control, autonomy, self-sufficiency, distrust of others, and avoidance of intimacy. Such characteristics may be measured by attachment style. We compared family members’ reports of attachment style in Oregonians who did and did not request PAD.

Eighty-four family members of terminally ill patients who requested PAD before death and 63 members of a comparison group that included family members of terminally ill Oregonians who died without requesting PAD rated their loved ones' attachment style in a one-time survey.

Individuals who requested PAD were most often described as having dismissive personality styles (56%) compared to 41% of comparison individuals, and on continuous measures of relational style, the highest mean score among PAD requesters was for dismissive style. There were marginally significant differences in the proportions of each attachment style when comparing the two groups (p = 0.08).

Patients’ attachment styles may be an important factor in requests for PAD. Recognition of a patient's attachment style may improve the ability of the physician to maintain a constructive relationship with the patient throughout the dying process.

The purpose of this study was to examine the efficacy and safety of aripiprazole in the treatment of delirium in hospitalized cancer patients, and to examine differential responses based on delirium subtypes.

We conducted an analysis of 21 hospitalized cancer patients at Memorial Sloan-Kettering Cancer Center (MSKCC) who had been evaluated and treated for delirium with aripiprazole, using an MSKCC Institutional Review Board (IRB) approved Clinical Delirium Database. Measures used were the Memorial Delirium Assessment Scale (MDAS), the Karnofsky Scale of Performance Status (KPS), and side effect rating at baseline (T1), 2–3 days (T2), and 4–7 days (T3). All measurements were integrated into the routine clinical care of patients. Doses of aripiprazole were adjusted based on clinical response.

Patients treated for delirium with aripiprazole experienced significant improvement and resolution of delirium, with MDAS scores declining from a mean of 18.0 at baseline (T1) to mean of 10.8 at T2 and a mean of 8.3 at T3. KPS scores improved from 28.1 at baseline (T1) to 35.2 at T2 and 41 at T3. Delirium resolved (based on MDAS < 10) in 52.4% of cases at T2 and in 76.2% at T3. The mean dosage of aripiprazole required was 18.3 mg (range of 5–30) daily at T3. In our cohort of patients with hypoactive delirium, we observed a delirium resolution rate of 100% compared to the cohort of patients with hyperactive delirium (58.3% rate of delirium resolution). MDAS scores improved from 15.6 at T1 to 5.7 at T3 in hypoactive delirium and from 19.9 at T1 to 10.2 at T3 in hyperactive delirium. In patients with pre-morbid cognitive deficits and the hyperactive subtype of delirium, we observed a more limited treatment response to aripiprazole treatment for delirium. There were no clinically significant side effects noted.

Aripiprazole is effective and safe in the treatment of delirium in hospitalized cancer patients. These preliminary finding suggest that aripiprazole may be most effective in resolving delirium of the hypoactive subtype.

The purpose of this study was to develop a communication skills training (CST) module for oncology healthcare professionals on how to more effectively respond to patient anger. We also sought to evaluate the module in terms of participant self-efficacy and satisfaction.

The development of this module was based on a systematic review of the literature and followed the Comskil model previously used for other doctor–patient CST. Using an anonymous 5-point Likert scale, participants rated their pre-post self-efficacy in responding to patient anger as well as their satisfaction with the course. Data were analyzed using a paired sample t test.

During the academic years 2006–2009, 275 oncology healthcare professionals participated in a CST that focused on responding to patient anger. Participants' confidence in responding to patient anger increased significantly (p < 0.001) after attending the workshop. They also agreed or strongly agreed to five out of six items assessing course satisfaction 92–97% of the time.

We have developed a CST module on how to respond to patient anger, which is both effective and useful. Training healthcare professionals to respond more effectively to patient anger may have a positive impact on the patient–physician relationship.

Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions.

Both family members during ongoing APHC and family members 3–9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis.

Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security.

The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.

The purpose of this study was to examine the differences in phenomenology between hypoactive and hyperactive subtypes of delirium, and specifically to determine the comparative prevalence of perceptual disturbances (e.g., hallucinations) and delusions in these two subtypes of delirium.

We conducted an analysis of Memorial Delirium Assessment Scale (MDAS) items in a set of 100 delirium cases evaluated and treated at Memorial Sloan-Kettering Cancer Center (MSKCC) utilizing an MSKCC Institutional Review Board (IRB) approved Clinical Delirium Database. Individual MDAS items, reflecting the phenomenology of delirium, were compared in delirious patients classified as to motoric subtype (hypoactive versus hyperactive based on MDAS item no. 9, psychomotor activity). Particular attention was paid to differences between subtypes as to the prevalence of perceptual disturbances (MDAS item no. 7) and delusions (MDAS item no. 8).

Significant differences were found between hyperactive and hypoactive subtypes of delirium for the presence and severity of perceptual disturbances and delusions; with perceptual disturbances (e.g., hallucinations) and delusions being significantly more prevalent in hyperactive than in hypoactive delirium. The prevalence of perceptual disturbances was 50.9% and the prevalence of delusions was 43.4% in patients with hypoactive delirium. In patients with hyperactive delirium, the prevalence of perceptual disturbances was 70.2% and the prevalence of delusions was 78.7%. The prevalence of perceptual disturbances and delusions in both subtypes of delirium was significantly correlated with the presence of moderate-to-severe disturbance of consciousness/arousal (MDAS item no. 1) and attention impairment (MDAS item no. 5), but was not correlated with the presence of moderate-to-severe cognitive impairment (MDAS item nos. 2–4).

Contrary to earlier studies, which indicated extremely low prevalence rates of perceptual disturbances (e.g., hallucinations) and delusion in hypoactive delirium, our study demonstrates that the prevalence of perceptual disturbances and delusions in hypoactive delirium is much higher than previously reported (50.9% and 43.4%, respectively), and deserving of clinical attention and intervention.

Little attention has been given to assessing the importance of self-care and communication in the caregiving setting, especially caregiving for those who are terminally ill. The Caregiver Inventory (CGI), a measure of self-efficacy for caregiving that includes these two dimensions, was subjected to psychometric analyses.

One hundred and thirty-three primary caregivers completed the CGI; of those, 81 also completed the Perceived Stress Scale (PSS), Caregiver Burden Inventory (CBI), and a measure of caregiver tasks (ADLR-CG). Based on home visits, social workers also rated the caregiver tasks required (ADLR-SW). Exploratory Factor Analysis, as well as reliability and validity analyses were conducted.

Fit indices in M + I (V. 5.1) indicated a four factors solution: Managing Medical Information (α = 0.64), Caring for Care Recipient (α = 0.78), Caring for Oneself (α = 0.88), and Managing Difficult Interactions/Emotions (α = 0.76). The CGI was highly negatively related to stress (PSS, r = −0.54, p = 0.001) and burden (CBI, p = −0.37, p = 0.001); ADLR-CG was related to burden (r =  0.43, p = 0.001) but not stress. In regression and relative importance analyses, Care of Oneself and Managing Difficult Interactions/Emotions emerged as equal in terms of having the strongest and most robust negative relationships with stress and burden.

Results suggest that the CGI is a reliable and valid measure of self-efficacy for caregiving, and indicate the importance of self-efficacy for self-care and for managing difficult communication in successfully navigating the demands of caregiving for terminally ill persons.

The objective of this study was to develop a clinically relevant tool to assess parental engagement in decision making and planning for seriously ill children during palliative care consultations. Although little is known about the structure and process of planning meetings between parents and providers, less is known about the nature of parental engagement as it relates to decision making ability in pediatric end-of-life care. Using attachment and caregiving as a framework, this study clarified important dimensions of parental engagement.

Using a multi-phase, template-matching technique, both literature and pediatric palliative care consultation data were analyzed, iteratively reviewed, matched, and categorized to create a measure of parental engagement. The attachment paradigm serves as the theoretical framework for the study, which focuses on parental engagement in decision making as a caregiving system function. Attachment and related literatures as well as coping and pediatric palliative care literatures were used in the initial conceptual sampling phase.

The study yielded two groups of findings. The first set of findings centered on the findings of the literature and consultation template-matching phases of the work. These two phases yielded a conceptual model of parental engagement as a psychobehavioral complex consisting of three dimensions: information-centered dialogue, insightful participation, and achievement of a collaboratively agreed-upon plan. The final phases consisted of creation of a 9 point Parental Engagement Scale, scoring of the consultations, and establishment of initial inter- rater reliability at .80. Psychometric testing continues.

Parental engagement in decision making is a critical area for study and intervention. If we can support parents in their caregiving executive functions while understanding the psychological and emotional underpinnings of the caregiving system and parental engagement itself, we can move inquiry forward in understanding parental needs for intervention during this most profoundly challenging time.

Using data from a multi-site study of parent–child symptom reporting concordance, this secondary analysis explored the role of parent self-efficacy related to pain management for seriously ill school-age children and adolescents.

In the initial study, 50 children and adolescents who were expected to survive 3 years or less were recruited along with their parent/primary caregiver. Parent self-report data were used in this secondary analysis to describe parent self-efficacy for managing their child's pain, caregiver strain, mood states, and perception of the child's pain; to explore relationships among these variables; and to determine predictors of greater self-efficacy.

Parents expressed a wide range of self-efficacy levels (Chronic Pain Self-Efficacy Scale; possible range 10–100, mean 76.2, SD 14.7) and higher levels on average than reported previously by family caregivers of adult patients. Caregiver Strain Index scores were markedly high (possible range 0–13, mean 8.1, SD 3.8) and inversely correlated with self-efficacy (r = −0.44, p = 0.001). On the Profile of Mood States parents reported more negative moods (t = 4.0, p < 0.001) and less vigor (t = −5.0, p < 0.001) than adults in a normative sample, yet vigor rather than mood disturbance predicted self-efficacy. With the exception of child age, self-efficacy was not associated with demographics (child gender, ethnicity, household income, parent age, education, family size) or with the diagnostic groups (primarily cardiac and oncologic) comprising the sample. Younger child age, less caregiver strain, more parent vigor, and parent perception that child is without pain predicted more than half of the variance in parent self-efficacy (R2 = 0.51).

Findings advance knowledge of parent self-efficacy in managing the pain of a child with life-threatening illness. Results can be used to design supportive interventions enhancing parents’ caregiving roles during their child's last stages of life.

The aim of the study was to describe family members' experiences of content, structure, and approach of a potential intervention including a support group program for family members of persons with life-threatening illness.

The study was a pilot project in a developmental phase in which a potential intervention, a support group program, was investigated. The design of the study was qualitative descriptive. Twenty-nine family members were interviewed by telephone after taking part in the program. The interviews were analyzed using qualitative content analysis.

The results indicate that the support group program could work as an acceptable and useful intervention for family members. The program was experienced to cover topics of immediate interest reflecting life close to severely ill persons. The structure of the program was found to be inviting, offering an opportunity to establish relationships with other participants and the caring team in a warm atmosphere.

The study indicates the importance of health professionals inviting and interacting with family members during ongoing palliative care. The results could inspire nursing staff to initiate, develop, and deliver similar interventions.

Depression is common among chronically ill patients and their relatives. In this article, we investigated the prevalence of depression among relatives of cancer patients in Jordan, and studied the relation between several socio-demographic, disease- and treatment-related factors, together with the occurrence of depression among those relatives.

A cross-sectional survey study was conducted at a major university hospital in Jordan. Relatives of cancer patients were interviewed for socio-demographic information, and medical records were checked for information about disease and treatment of patient. Psychological status of the relative was assessed using the Hospital Anxiety & Depression Scale (HADS).

The prevalence of depression in our sample was 81.9%. Age and degree of relatedness were significantly correlated with the occurrence of depression among relatives of cancer patients. Significant correlations were also detected between depression among patient's relatives and the stage of the disease. Positive predictive factors for depression included relatives being middle aged, close relatedness, patients being in advanced disease stage, and on chemotherapy or undergoing surgery for cancer treatment.

Depression is prevalent among relatives of cancer patients. Therefore, more attention is needed to detect changes in the psychological state of vulnerable relatives of cancer patients, in an effort to reduce the occurrence of depression.

This article examines the views and opinions of staff from a larger study exploring the palliative and end-of-life care needs of patients with progressive long-term neurological conditions (PLTNC).

Eighty staff, in a range of professions from three types of care services provided to people with PLTNC in England, took part in 14 focus groups and 3 individual interviews. Sites included six long-term residential neurological care centers, an inpatient service at an urban hospice, and a multi-disciplinary outpatient service for people with Huntington's disease.

Findings show a concordance between the views of staff from across the three types of participating services. Staff placed particular emphasis on teamwork, support from community-based resources, and developing rapport with patients in order to provide high quality palliative and end-of-life care. All staff perceived that identifying the dying phase was a particular challenge, sometimes resulting in patients being admitted to hospital at the end of life in contravention of their expressed advance wishes for place of death.

This article adds to a small body of literature that seeks staff views and opinions about the rewards and challenges of providing palliative and end-of-life care to people with complex needs arising from long-term conditions. Although this article focuses primarily on the challenges of caring for people with neurological conditions, many issues reported are of wider relevance for the delivery of palliative and end-of-life care in other conditions.

Religious participation is positively associated with mental health, but attendance at worship services declines during serious illness. This study assessed whether home visits by clergy or laity provide benefits to seriously ill patients who may have difficulty attending religious services.

A cross-sectional study design nested in an observational epidemiologic cohort study was used. The regionally representative sample of patients had metastatic lung, colorectal, breast, and prostate cancer (n = 70); Class III and IV congestive heart failure (n = 70); or chronic obstructive pulmonary disease with hypercapnea (n = 70) and were observed regarding clergy–laity support in their natural environments. Dependent variable: 10-item Center for Epidemiologic Studies – Depression Scale. Independent variable: A one-item question measuring how much helpful support patients received from clergy or other persons from church, temple, synagogue, or mosque. Covariates: demographic, health, social support, religiousness.

Depressed mood was negatively associated with clergy–laity support in a non-linear pattern. Depressed mood was also positively associated with functional deficits and a lifetime history of difficulties related to religious involvement.

In lieu of worship attendance when people are sick, home visits by members of a patient's religious community may bolster mood by providing continuity of instrumental, emotional, and spiritual support.

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.