To explore patients' understanding of decision making in the treatment of advanced cancer and to determine the factors they believe important to these processes in their care.

Surveys were distributed to consecutive outpatients with advanced malignancy attending a comprehensive cancer treatment center.

Patients believed that the medical condition (94%), their doctors' experience (81%), and the medical literature (73%) are the most important factors for decisions made in their care. They also value their relationship with the doctor (63%) and their own (the patients') values (63%), and just over a third considered their family's values and the doctors' personality important. Most did not believe the doctors' values should influence decisions made. They were mindful of the uncertainty involved in decisions in the setting of advanced cancer.

Overall, patients were satisfied with the decision-making processes and they understood and highly regarded the incorporation of factors, other than their medical condition, in their care.

When providing care for a loved one with a terminal illness, family members often look to health care providers for guidance and expertise. The objective of this study is to explore family caregiver accounts of their experiences within the health care system and with individual providers.

A thematic analysis of secondary qualitative data was performed. Data are from a subsample of bereaved and current family caregivers (N = 31) in a prior study of coping in end-of-life cancer situations. Data from these participants referring to experiences with health care providers was thematically coded and the concept of “security” was used as an analytic lens to facilitate conceptual development and exploration.

Considered together, the findings can be viewed as manifestations of a need and desire for security in palliative family caregiving. Specifically, family caregivers' accounts illustrate the importance of feeling secure that health care services will be provided by competent professionals; feeling secure in their timely access to needed care, services, and information; and feeling secure in their own identity and self-worth as a caregiver and individual. In addition, the findings suggest a conceptualization of security that extends beyond trust in individuals to include a generalized sense of institutional trust in the health care system.

The concept of security moves beyond description of individual satisfaction or dissatisfaction with health care to identify a common, foundational need underlying such evaluations. Further empirical research is needed that explicitly focuses on caregivers' experiences of security and insecurity in the domains identified in this article. This will contribute to theory building as well as assist in identifying the causes and consequences of security.

Hospice utilization lasting for 2 weeks or less before death is considered “short.” Short, late-stage hospice admissions have been viewed as inadequate for providing end-stage symptom management, maximal comfort, and a comprehensive focus on life closure and as an underutilization of the Medicare Hospice Benefit. The purpose of this study was to explore psychosocial dynamics during late-stage hospice admissions by comparing the perspectives of hospice professionals and family caregivers. Salutogenic principles and concepts from Antonovsky's Sense of Coherence Theory (SOC) guided the inquiry.

This exploratory, descriptive study involved a developmental design. First, hospice professionals' perspectives about psychosocial dynamics commonly observed in late-stage admissions were gathered. Themes were distilled into a Psychosocial Factors Checklist (PFC). Second, interviews that incorporated open-ended questions and the PFC were conducted with 56 family caregivers of hospice patients who died from cancer within 2 weeks of admission. Participant responses were transcribed and entered into Atlas ti software for data management and coding. Responses to the PFC were clustered around the SOC constructs (manageability, comprehensibility, meaningfulness) to create corresponding subscales. Interitem correlations were conducted to explore the associations among items.

Late-stage admissions were a crisis (54%), chaotic (43%), emotional (80%), and a time of open communication (80%) and meaningful conversations (73%). Hospice utilization was “just long enough” (49%) and “too short” (49%). The Manageability subscale (M = 4.09) suggested that caregivers experienced moderate difficulty. Manageability included physical challenges, emotional responses, informational needs, and benefits/resources. Comprehensibility emerged from medical results, visual signs, and hospice guidance. Meaningfulness was personal-individual, family-shared, and spiritual-existential.

Hospice professionals and caregivers view late-stage admissions differently; they are a crisis for some but not all families. The development of a quick assessment tool for late-stage admissions has the potential for meaningful and effective intervention when time is of the essence.

The purpose of this study was to qualitatively examine the content of the psychological responses in interviews with breast cancer outpatients receiving initial medical consultation.

The participants were 180 people who visited the breast cancer outpatient clinic at Kitasato University Hospital between November 2004 and August 2005. The remaining 176 participants (39 breast cancer patients and 137 benign tumor patients; average age ± SD: 50.7 ± 12.4 years) were analyzed. Two clinical psychologists carried out the interview, asking the participants to speak freely about their anxieties, worries, thoughts, and feelings up until the medical examination. This study used a content analysis of interviews to chronologically examine psychological response of cancer patients seeking medical consultation at three points in time.

Patients at the time of their first outpatient breast cancer consultation experience negative feelings before the examination, directly influenced by the suspicion of cancer. These include anxiety and worries, fear, evasion, depression, and impatience. These tendencies do not change at the time of consultation. However, in addition to negative feelings, some people also possess positive feelings, either simultaneously or at a different point in time. Further, many patients tend to talk at length about psychological responses before seeking treatment, understanding the process they went through to come to seek treatment as an important event.

It is important for medical workers to bear in mind the psychological conflicts that patients may undergo before seeking treatment and ensure that sufficient communication takes place.

Many studies have identified negative and distressing consequences experienced by informal cancer carers, but less attention has been given to positive and beneficial aspects of caring. This qualitative study examined the positive aspects of caring as subjectively constructed by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole.

Twenty-three bereaved informal cancer carers were interviewed, and their accounts were analyzed using a thematic analytical approach from a phenomenological perspective.

The participants were able to identify positive and beneficial aspects of caring. These included the discovery of personal strength, through adversity, acceptance, and necessity; the deepening of their relationship with the person for whom they cared; and personal growth through altered relationships with others and altered perspectives on living. Many participants gave accounts of focusing on these positive benefits when they reflected on their caring experiences.

We concluded that benefit finding in the face of adverse events serves an important function in allowing individuals to incorporate difficult experiences into their worldview in a meaningful way, thus maintaining positive beliefs about the world. This has implications for the development of interventions for informal cancer carers and for those who are bereaved following caring.

The negative impact of a palliative cancer diagnosis on the quality of life of patients and their partners is well documented. Unfortunately, research on interventions to improve psychological and spiritual well-being of these couples has been considered impractical because of the deleterious influence of disease progression on participation. This study evaluated the feasibility of offering the Tapestry Retreat, an intensive psychosocial intervention for palliative care patients and their partners.

Participants in the Tapestry Retreat included 15 patients with advanced breast, prostate, or colon cancer and their partners (n = 30). Also included was a natural history group consisting of 20 patients and their partners (n = 40). All couples completed questionnaires related to quality of life, distress, marital satisfaction, and existential concerns at baseline, after the retreat or 1 month after baseline, and then again at 3, 6, 9, and 12 months.

Patients in the Tapestry group were significantly more likely to be women who had received prior psychological support and were less comfortable with their finances. Partners attending the Tapestry retreat were also more likely to have received prior psychological support.

Despite issues with recruitment and retention, retreat participation was considered feasible. Recommendations for future research are discussed.

Several studies have reported high levels of distress in family members who have made health care decisions for loved ones at the end of life. A method is needed to assess the readiness of family members to take on this important role. Therefore, the purpose of this study was to develop and validate a scale to measure family member confidence in making decisions with (conscious patient scenario) and for (unconscious patient scenario) a terminally ill loved one.

On the basis of a survey of family members of patients with amyotrophic lateral sclerosis (ALS) enriched by in-depth interviews guided by Self-Efficacy Theory, we developed six themes within family decision making self-efficacy. We then created items reflecting these themes that were refined by a panel of end-of-life research experts. With 30 family members of patients in an outpatient ALS and a pancreatic cancer clinic, we tested the tool for internal consistency using Cronbach's alpha and for consistency from one administration to another using the test–retest reliability assessment in a subset of 10 family members. Items with item to total scale score correlations of less than .40 were eliminated.

A 26-item scale with two 13-item scenarios resulted, measuring family self-efficacy in decision making for a conscious or unconscious patient with a Cronbach's alphas of .91 and .95, respectively. Test–retest reliability was r = .96, p = .002 in the conscious senario and r = .92, p = .009 in the unconscious scenario.

The Family Decision-Making Self-Efficacy Scale is valid, reliable, and easily completed in the clinic setting. It may be used in research and clinical care to assess the confidence of family members in their ability to make decisions with or for a terminally ill loved one.

A qualitative pilot study was conducted to identify and describe expert behaviors in care of the dying resident in a personal care home setting from the perspective of health care aides (N = 5) nominated by their peers as demonstrating excellence in end-of-life care.

Data was collected through audio-taped semi-structured interview, and transcribed verbatim using constant-comparative analysis procedures.

The over-arching theme emerging from the data was “caring as if it were my family.” Subsumed within this main theme included the sub-themes of: (1) care of the resident; (2) tending to the environment; (3) care of the family; (4) going to bat; and (5) processing loss.

The findings from this pilot study provide preliminary empirical evidence that could inform educational programs for and performance evaluation of, health care aides providing end-of-life care in personal care home environments.

In 2008 over two million family caregivers will become bereaved. The vast majority of these caregivers have provided ‘round-the-clock care for a period ranging from months to years. Bereaved family caregivers report insomnia symptoms that persist beyond 1 year, longer than what is seen in bereaved noncaregivers, placing them at increased risk of depression and complicated grief. Despite some rewarding elements, caregiving is a stressful and exhausting role that often requires the caregiver to restructure his or her life around the needs of the patient. Once the patient dies, the structure is lost. Cognitive behavioral therapy interventions are effective in providing structure. This pilot study explored the feasibility of a two-session home-based cognitive behavioral therapy–insomnia (CBT-I) intervention for bereaved family caregivers.

A 5-week longitudinal descriptive study design was used with 11 adult primary family caregivers of patients who died from cancer. A master's prepared nurse delivered two CBT-I intervention sessions in participant homes. Data collection sessions occurred at baseline, 3, and 5 weeks. A debriefing session was held at Week 6.

Participant evaluations of the intervention indicated that it was feasible and acceptable (e.g., 100% would recommend it to others); objective data further supported its feasibility (e.g., 100% completed the trial). In addition, when comparing baseline with Weeks 3 and 5, participants demonstrated improvement in insomnia and depressive symptoms.

The results of this pilot study suggest that the intervention is feasible and acceptable and produces promising effects on insomnia and depressive symptoms in bereaved family caregivers.

Symptom assessment is important in palliative care. Computerized technology (CT) is now available for use in such assessments. Barriers against implementation of CT in health care in general are well known, but less is known about how such technology is perceived by palliative health care personnel. The aim of the present study was to investigate the experience with implementation of CT among personnel in symptom assessment at a palliative care unit.

Seventeen respondents from a hospital ward unit and an outpatient clinic unit participated in an in-depth interview. A qualitative approach was used in collecting and analyzing the data.

Respondents at the hospital ward unit were better motivated than respondents at an outpatient clinic unit. It was stated that the health condition of the patient is important in their perception of the tool as useful or not. Conflicts between “high tech” and “high touch” were reported in both units.

When the implementation process is conducted in such a manner that the health care personnel are involved, benefits of the tool can be realized. Thus, effective implementation and use of high tech can lead to more time released for high touch.

This article presents a validation study of the Demoralization Scale, a 24-item, 5-point response questionnaire developed by Kissane et al. in 2004 to assess demoralization in advanced cancer patients.

One hundred Irish inpatients with advanced palliative cancer completed the Demoralization Scale and measures of depression, hopelessness, quality of life, and personal hopefulness.

Principal component analysis of the Demoralization Scale yielded four similar factors found by Kissane et al. (2004), namely, loss of meaning, dysphoria, disheartenment, and sense of failure. A new factor, the hopelessness factor, was also found in the current study. The reliability of the five factors was good, ranging from .72 to .93. Contrary to the findings of Kissane et al.'s (2004) study, divergent validity of the Demoralization Scale was not supported. Demoralized patients were significantly more likely to be depressed than those that did not score highly on the Demoralization Scale. In addition, this study found significantly lower levels of demoralization in general compared with Kissane et al.'s (2004) study.

The results of the current study show that, in an Irish palliative care context, demoralization is not differentiated from depression. Additional factor analytic studies are needed to validate the Demoralization Scale.

Tentative results from a pilot study showed that patients with advanced cancer were willing and able to take part in a group exercise intervention. Limited knowledge exists, though, about the meaning and significance of such programs. The purpose of the present study was to understand the meaning of such an intervention for the individual participant and thereby to provide knowledge for shaping future clinical practice.

Thirty-four palliative cancer patients with a life expectancy of less than 1 year completed a 6-week group exercise program. Five randomly selected individuals were interviewed 7 months after completion. Results from a self-report evaluation questionnaire identified relevant themes that formed the basis of an interview guide. These were addressed in a semistructured interview. Verbatim transcripts were analyzed with a phenomenological–hermeneutical approach.

Two main themes emerged from the interviews: (1) perceptions of the group and (2) a secure and caring setting for the group. Themes identified regarding perception of the group were a sense of belonging and commitment. Themes identified regarding a secure and caring setting for the group were a life-empowering group as a setting for enhancing coping, the qualifications of those who led the group, and a public gym as an unsuitable setting.

Our study indicates that an individually adjusted group exercise program, with competent leaders, can provide a setting to enhance psychological well-being in cancer patients with life expectancy below 1 year. Small sample size, however, limits the possibility to generalize the findings.

The induction of sedation at the end of life is a much debated practice and not very documented. The goal of this study was to explore the practice from both a clinical and ethical point of view.

Data were collected through semistructured interviews with 19 Quebec physicians working in palliative care.

Doctors' first priority was their patients, not patients' families. Clinically, the therapeutic aim of sedation was strictly to relieve suffering on the part of the patient. Ethically, getting the patient's consent was imperative. The family's consent was only required in cases of incapacity. Generally, sedation and euthanasia were seen as two distinct practices.

There are still very few guidelines regarding end-of-life sedation in Québec, and its normative framework is more implicit than explicit. It should be noted that most of the respondents regarded sedation and euthanasia as two distinct practices.

This study aims to explore and understand how people with advanced cancer create meaning and handle everyday life through activity.

A purposive sample of seven participants was recruited from a larger study. Data were collected through qualitative interviews and participant observations conducted in the participants' home environments while they were engaged in activities to which they assigned particular value. Interpretive analysis was conducted using narrative theory and relevant literature.

The study shows how people in conditions of advanced cancer fashion narratives useful for handling everyday life with advanced cancer. A meta-narrative of “saying goodbye in a good way” provided an overall structure for the participants as they attempted to create desired narratives negotiated in context of the individuals' sociocultural life and in the proximity of death. A narrative of “being healthy although ill” provided an arena for exploring the contrast between simultaneously feeling well and severely ill. Further emplotment of activities in “routines and continuity” was identified as a means to provide a safe, familiar framework stimulating participants' everyday agency. “My little Mecca” was identified as a narrative reflecting the activity of life-confirming experiences and taking time out.

The identified narratives performed and told in daily life may guide the development of palliative care services to support people with advanced cancer in creating meaning in the remains of their lives.

The treatment experience for patients undergoing surgical treatment of colorectal cancer (CRC) liver metastasis is understudied. This study sought to identify common themes in this experience in order to identify factors of importance in treatment decision making.

The study utilized the phenomenological qualitative research approach. In-depth patient interviews conducted by a nurse researcher were tape-recorded and analyzed using the Colaizzi procedural steps.

All participants were interviewed and included 7 men and 5 women, ages 43–75, each with treatment experience with both chemotherapy and major surgery. Participants did not recall their decision to undergo liver surgery as a single event, rather as another in a series of health care choices during the long continuum of their CRC cancer disease experience. Seven common themes that emerged from the analyses of interviews as having significant impact on their treatment experience were communication with the health care provider, support from others, the patient's own attitude, cure uncertainty, coping strategies, hospital care concerns, and Internet information.

This study identified factors of importance to patients that may serve to enhance communication, education, treatment satisfaction, and access to surgery for patients with CRC liver metastases. Further validation of our findings with a broader patient population is necessary.

The relatives’ burdens in palliative care are considerable and may cause fatigue. The overall aim of this study was to gain a greater understanding of fatigue in relatives of patients cared for in palliative care settings.

This study has a descriptive, comparative, and cross-sectional design. The sample consisted of relatives of all patients cared for in palliative care settings in Uppsala County during a specific day. Relatives completed a questionnaire consisting of the Multidimensional Fatique Inventory (MFI-20) and questions from the Karolinska Sleepiness Scale (KSS) and Karolinska Sleep questionnaire (KSQ).

Relatives (n = 56) scored high on every dimension on the MFI-20 scale. Two significant negative correlations were found to exist between age and fatigue, with younger relatives reporting more mental fatigue (p < .01) and more reduced activity (p < .01) than older relatives. Relatives of patients in institutional care had higher values concerning mental fatigue (p < .01) and reduced motivation (p < .05). Relatives of mostly bedridden patients were significantly more tired but did not have significantly less motivation than relatives of mostly ambulatory patients.

The findings imply that fatigue is highly prevalent in relatives of patients in palliative care. The sample in this study scored higher in comparison with norm values and also in comparison with relatives of patients with end-stage renal disease. Their scores were similar to those of cancer patients undergoing radiotherapy.

This article aims to highlight potentially high levels of childhood sexual abuse within Cancer and Palliative Care Service users.

During a routine audit, data was collated to quantify a perceived high level of disclosure of pre-existing psychological trauma within the palliative care caseload of a Macmillan Children and Families Therapist. Families comprised adults (generally parents or step-parents), one of whom was terminally ill or recently deceased who had direct responsibility for children and young people aged under 20 years old. Each family had at least two members using the service for advice, emotional support or counselling.

A childhood sexual abuse rate of 33% for women and 10% for men was revealed. Of 59 families, 49% had one or more members who had experienced childhood sexual abuse. In addition a further 9% of adults had experienced severe physical and emotional abuse in childhood. Many families had faced multiple trauma.

Palliative care clinicians have access to detailed personal and family history during a highly vulnerable transition. While confidentiality is paramount it is essential to develop better data collection methods and raise the profile of childhood sexual abuse as a major contributing factor to morbidity. A whole family assessment is crucial to ensure child protection and emotional care for children facing the loss and subsequently bereaved of a parent or a carer. Clinicians must be able to offer a range of approaches which provide distressed patients with a history of childhood abuse some sense of emotional containment at the end of life, a challenge which cannot be overstated.

Our objective was to determine the knowledge, attitudes, and practices of physicians and nurses on Palliative Care (PC) in Lebanon, across specialties.

We performed a cross-sectional descriptive survey using a self-administered questionnaire; the total number of completed and returned questionnaires was 868, giving a 23% response rate, including 74.31% nurses (645) and 25.69% physicians (223).

Significant differences were found between medical and surgical nurses and physicians concerning their perceptions of patients' and families' outbursts, concerns, and questions. Knowledge scores were statistically associated with practice scores and degree. Practice scores were positively associated with continuing education in PC, exposure to terminally ill patients, and knowledge and attitude scores. Acute critical care and oncology were found to have lower practice scores than other specialties.

Formal education in palliative care and development of palliative care services are very much needed in Lebanon to provide holistic care to terminally ill patients.

There is a paucity of randomized controlled trials (RCTs) to evaluate models of palliative care. Although interventions vary, all have faced a variety of methodological challenges including adequate recruitment, missing data, and contamination of the control group. We describe the ENABLE II intervention, methods, and sample baseline characteristics to increase intervention and methodological transparency, and to describe our solutions to selected methodological issues.

Half of the participants recruited from our rural U.S. comprehensive cancer center and affiliated clinics were randomly assigned to a phone-based, nurse-led educational, care coordination palliative care intervention model. Intervention services were provided to half of the participants weekly for the first month and then monthly until death, including bereavement follow-up call to the caregiver. The other half of the participants were assigned to care as usual. Symptoms, quality of life, mood, and functional status were assessed every 3 months until death.

Baseline data of 279 participants were similar to normative samples. Solutions to methodological challenges of recruitment, missing data, and “usual care” control group contamination are described.

It is feasible to overcome many of the methodological challenges to conducting a rigorous palliative care RCT.

Fatigue is currently recognized as an undertreated symptom in cancer. To date the association between fatigue and inflammatory activation has not been examined in patients with advanced cancer. Our exploratory investigation considered whether variations in routinely available hematological parameters relate to the severity of fatigue reports.

Fatigue, white blood cell differential, and hemoglobin concentration were assessed in 44 Stage IIIb and IV non-small-cell lung cancer (NSCLC) patients. Days of survival and the relative timing of treatment discontinuation were also recorded. Relationships between fatigue intensity and length of survival and between fatigue and hematological variables were examined using binomial and linear regressions respectively.

When we controlled for effects related to age, gender, and time until treatment termination, more intense fatigue was associated with shorter survival (β = −.34, p = .03). Lower hemoglobin concentrations were associated with more intense fatigue (β = −.36, p = .04). When we controlled for the effect attributable to hemoglobin, higher neutrophil (β = .43, p = .01) and monocyte (β = .31, p = .05) concentrations were associated with reports of more severe fatigue.

This exploratory study provides empiric data showing that the severity of fatigue reported by advanced-stage NSCLC patients is significantly associated with length of survival. Consistent with existing data, linear regression identified a negative association between fatigue intensity and hemoglobin concentration. When we controlled for this effect, further linear regressions identified significant relationships between fatigue and blood concentrations of neutrophils and monocytes. Further, the magnitude of relationship between myeloid cell concentrations and fatigue was similar to the effect size identified for the relationship between hemoglobin and fatigue. Thus, the indirect measure of inflammatory state provided by routinely assessed myeloid cell counts appears to play as strong a role as the established variable, hemoglobin, in accounting for the fatigue reported by this sample of advanced-stage lung cancer patients.