Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types—Manager, Carrier, Partner, Lone—each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes.

This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains.

Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life.

This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test interventions that target specific caregiver types.

Dignity therapy (DT) is a brief form of psychotherapy developed for patients living with a life-limiting illness that has demonstrated efficacy in treating several dimensions of end-of-life psychological distress. Our aim was to determine the influence of DT on demoralization syndrome (DS), the desire for death (DfD), and a sense of dignity (SoD) in terminally ill inpatients experiencing a high level of distress in a palliative care unit.

A nonblinded phase II randomized controlled trial was conducted with 80 patients who were randomly assigned to one of two groups: the intervention group (DT + standard palliative care [SPC]) or the control group (SPC alone). The main outcomes were DS, DfD, and SoD, as measured according to DS criteria, the Desire for Death Rating Scale, and the Patient Dignity Inventory (PDI), respectively. All scales were assessed at baseline (day 1) and at day 4 of follow-up. This study is registered with http://www.controlled-trials.com/ISRCTN34354086.

Of the 80 participants, 41 were randomized to DT and 39 to SPC. Baseline characteristics were similar between the two groups. DT was associated with a significant decrease in DS compared with SPC (DT DS prevalence = 12.1%; SPC DS prevalence = 60.0%; p < 0.001). Similarly, DT was associated with a significant decrease in DfD prevalence (DT DfD prevalence = 0%; SPC DfD prevalence = 14.3%; p = 0.054). Compared with participants allocated to the control group, those who received DT showed a statistically significant reduction in 19 of 25 PDI items.

Dignity therapy had a beneficial effect on the psychological distress encountered by patients near the end of life. Our research suggests that DT is an important psychotherapeutic approach that should be included in clinical care programs, and it could help more patients to cope with their end-of-life experiences.

Our aim was to compare changes in emotional processing by women newly diagnosed with gynecological cancer enrolled in either a coping and communication skills intervention (CCI) or a supportive counseling (SC) intervention. We examined the association between in-session emotional processing and patient-rated therapeutic progress.

Three therapy sessions with 201 patients were rated for the depth of emotional processing (peak and mode) during emotion episodes (EEs) using the Experiencing Rating Scale (EXP). Participants completed measures of dispositional emotional expressivity, depressive symptoms, and cancer-related distress before treatment began, as well as ratings of perceived progress in therapy after each session.

Peak EXP ratings averaged between 2.7 and 3.1, indicating that women discussed events, their emotional reactions, and their private experiences in sessions. A small proportion of patients had high levels of processing, indicating deeper exploration of the meaning of their feelings and experiences. Women in SC were able to achieve a higher level of emotional processing during the middle and later sessions, and during cancer-related EEs in the later session. However, emotional processing was not significantly associated with a patient's perceived therapeutic progress with SC. In the CCI group, higher levels of emotional processing were associated with greater session progress, suggesting that it may play an important role in patient-rated treatment outcomes.

Newly diagnosed gynecological cancer patients are able to attend to their emotions and personal experiences, particularly when discussing cancer-related issues during both short-term SC and prescriptive coping skills interventions.

Palliative sedation is a method of symptom management frequently used in hospices to treat uncontrolled symptoms at the end of life. There is a substantial body of literature on this subject; however, there has been little research into the experiences of hospice nurses when administering palliative sedation in an attempt to manage the terminal restlessness experienced by cancer patients.

Semistructured interviews were conducted with a purposive sample of seven hospice nurses who had cared for at least one patient who had undergone palliative sedation within the past year in a hospice in the south of England in the United Kingdom. A phenomenological approach and Colaizzi's stages of analysis were employed to develop themes from the data.

Facilitating a “peaceful death” was the primary goal of the nurses, where through the administration of palliative sedation they sought to enable and support patients to be “comfortable,” “relaxed,” and “calm” at the terminal stage of their illness. Ethical dilemmas related to decision making were a factor in achieving this. These were: medication decisions, “juggling the drugs,” “causing the death,” sedating young people, the family “requesting” sedation, and believing that hospice is a place where death is hastened.

Hospice nurses in the U.K. frequently encounter ethical and emotional dilemmas when administering palliative sedation. Making such decisions about using palliative sedation causes general discomfort for them. Undertaking this aspect of care requires confidence and competence on the part of nurses, and working within a supportive hospice team is of fundamental importance in supporting this practice.

Hospice is an important method of promoting quality end-of-life (EoL) care, yet its utilization is relatively low in underserved populations. The unique characteristics of a border community—such as a lack of healthcare resources and cultural integration—impact EoL decision making. The aim of our study was to assess the willingness to use hospice care services and its predictors among family caregivers of Latino patients in the United States (U.S.)–Mexico border region of Southern California.

This study analyzes secondary data from a home health agency in the U.S.–Mexico border region. Quantitative data were collected via a face-to-face interview with 189 caregivers of patients enrolled in the agency. Bivariate tests and logistic regression were employed to address our study objectives.

The majority (83%) of family caregivers were willing to use hospice services for their loved ones. The factors impacting willingness to use hospice services included the primary language of the caregiver (OR = 6.30, CI95% = 1.68, 23.58); trust in doctors to make the right decisions (OR = 3.77, CI95% = 1.05, 13.57); and the belief that using hospice care means giving up on life (OR = 0.52, CI95% = 0.30; 0.88). Caregivers who trusted doctors to make the best decisions for their loved ones and English-speaking caregivers were more willing to utilize hospice services, while caregivers who held a strong belief that hospice care means giving up on life were less likely to consider using hospice care for their loved ones.

The willingness of family caregivers to use hospice services for their loved ones is influenced by cultural perspectives about hospice care. As the importance of family involvement in EoL care planning has been highlighted, family caregivers' beliefs about hospice care services need to be addressed within their particular cultural context.

Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes.

Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics.

The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place.

There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.

When registered nurses care for patients at the end of life, they are often confronted with different issues related to suffering, dying, and death whether working in hospital or community care. Serious existential questions that challenge nurses’ identities as human beings can arise as a result of these situations. The aim of our study was to describe and gain a deeper understanding of nurses’ existential questions when caring for dying patients.

Focus-group interviews with registered nurses who shared similar experiences and backgrounds about experiences in end-of-life care were employed to gain a deeper understanding about this sensitive subject. Focus-group interviews were performed in hospice care, in community care, and in a palliative care unit in western Sweden. A qualitative hermeneutic approach was employed to interpret the data.

Nurses’ existential questions balanced between responsibility and guilt in relation to their patients, between fear and courage in relation to being professional caregivers and fellow human beings, and between hope and despair in relation to the other's and their own death.

Nurses in end-of-life care experience various emotions from patients related to things physical, spatial, and temporal. When nurses encounter these emotions as expressing a patient's suffering, they lead to challenges of balancing between different feelings in relation to patients, as both professional caregivers and fellow human beings. Nurses can experience growth both professionally and as human beings when caring for patients at the end of life.

There is a growing body of literature describing the characteristics of patients who plan for the end of life, but little research has examined how caregivers influence patients' advance care planning (ACP). The purpose of this study was to examine how patient and caregiver characteristics are associated with advance directive (AD) completion among patients diagnosed with a terminal illness. We defined AD completion as having completed a living will and/or identified a healthcare power of attorney.

A convenience sample of 206 caregiver–patient dyads was included in the study. All patients were diagnosed with an advanced life-limiting illness. Trained research nurses administered surveys to collect information on patient and caregiver demographics (i.e., age, sex, race, education, marital status, and individual annual income) and patients' diagnoses and completion of AD. Multivariate logistic regression was employed to model predictors for patients' AD completion.

Over half of our patient sample (59%) completed an AD. Patients who were older, diagnosed with amyotrophic lateral sclerosis, and with a caregiver who was Caucasian or declined to report an income level were more likely to have an AD in place.

Our results suggest that both patient and caregiver characteristics may influence patients' decisions to complete an AD at the end of life. When possible, caregivers should be included in advance care planning for patients who are terminally ill.

Approximately 75% of prescription opioid abusers obtain the drug from an acquaintance, which may be a consequence of improper opioid storage, use, disposal, and lack of patient education. We aimed to determine the opioid storage, use, and disposal patterns in patients presenting to the emergency department (ED) of a comprehensive cancer center.

We surveyed 113 patients receiving opioids for at least 2 months upon presenting to the ED and collected information regarding opioid use, storage, and disposal. Unsafe storage was defined as storing opioids in plain sight, and unsafe use was defined as sharing or losing opioids.

The median age was 53 years, 55% were female, 64% were white, and 86% had advanced cancer. Of those surveyed, 36% stored opioids in plain sight, 53% kept them hidden but unlocked, and only 15% locked their opioids. However, 73% agreed that they would use a lockbox if given one. Patients who reported that others had asked them for their pain medications (p = 0.004) and those who would use a lockbox if given one (p = 0.019) were more likely to keep them locked. Some 13 patients (12%) used opioids unsafely by either sharing (5%) or losing (8%) them. Patients who reported being prescribed more pain pills than required (p = 0.032) were more likely to practice unsafe use. Most (78%) were unaware of proper opioid disposal methods, 6% believed they were prescribed more medication than required, and 67% had unused opioids at home. Only 13% previously received education about safe disposal of opioids. Overall, 77% (87) of patients reported unsafe storage, unsafe use, or possessed unused opioids at home.

Many cancer patients presenting to the ED improperly and unsafely store, use, or dispose of opioids, thus highlighting a need to investigate the impact of patient education on such practices.

The Demoralization Scale (DS) is the most widely used measure for assessing demoralization. Following the recent clamor for brief assessment tools, and taking into account that demoralization has proved to be a symptom that needs to be controlled and treated in the palliative care setting, a shorter scale is needed. The aim of the present research is to introduce and evaluate the Short Demoralization Scale (SDS).

We employed a cross-sectional design that included a survey of 226 Spanish palliative care patients from the Hospital General Universitario de Valencia. We employed the SDS, the DS, and the Hospital Anxiety and Depression Scale (HADS).

The confirmatory factor analysis supported the one-factor structure of the SDS (χ2(5) = 12.915; p = 0.024; CFI = 0.999; RMSEA = 0.084; CI95% = [0.028, 0.141]). The reliability was found to be appropriate, with a value of Cronbach's alpha (α) equal to 0.920. A cutoff criterion of 10 was established, which favored the interpretability of the instrument.

The SDS corrects previous limitations, has a simple scoring system, is cost-effective, and is widely and fully available. In addition, our findings demonstrate that the SDS can be employed effectively in the clinical context.

Our aim was to examine the accuracy of the German version of the Distress Thermometer (DT) compared with the Hospital Anxiety and Depression Scale (HADS) in patients with palliative care needs living at home.

Ours was a 15-month cross-sectional study beginning in September of 2013 in Germany with consecutive patients cared for by a palliative home care service. The survey was implemented during the initial visit by a home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the DT and HADS were applied, and sociodemographic and medical data were collected.

A total of 89 persons completed both the HADS and DT questionnaires (response rate = 59.7%; mean age = 67 years; female = 55.1%; married = 65.2%; living home with relatives = 73.0%; oncological condition = 92.1%; Karnofsky Performance Scale [KPS] score: 0–40 = 30.3%, 50–70 = 57.3%, >80 = 6.7%). The mean DT score was 6.3 (±2.3), with 84.3% of participants scoring above the DT cutoff (≥4). The mean HADStotal score was 17.9 (±7.8), where 64% of participants had a total HADS score (HADStotal) ≥15, 51.7% reported anxiety (HADSanxiety ≥ 8), and 73% reported depression (HADSdepression ≥ 8). Using the HADS as a gold standard, a DT cutoff score ≥5 was optimal for identifying severe distress in patients with palliative care needs, with a sensitivity of 93.0%, a specificity of 34.4%, a positive predictive value (PPV) of 73.3%, and likelihood ratios LR+ = 1.42 (<3) and –LR = 0.203 (<0.3).

The DT performed satisfactorily compared to the HADS in screening for distress in our study and can be employed as an instrument for identification of patients with distress. Consequent to the high prevalence of distress, we recommend its routine use for screening distressed persons at home with palliative care needs in order to offer adequate support.

The purpose of this study was to develop a reliable and valid scale that broadly measures knowledge about palliative care among non-healthcare professionals.

An initial item pool of 38 true/false questions was developed based on extensive qualitative and quantitative pilot research. The preliminary items were tested with a community sample of 614 adults aged 18–89 years as well as 30 palliative care professionals. The factor structure, reliability, stability, internal consistency, and validity of the 13-item Palliative Care Knowledge Scale (PaCKS) were assessed.

The results of our study indicate that the PaCKS meets or exceeds the standards for psychometric scale development.

Prior to this study, there were no psychometrically evaluated scales with which to assess knowledge of palliative care. Our study developed the PaCKS, which is valid for assessing knowledge about palliative services in the general population. With the successful development of this instrument, new research exploring how knowledge about palliative care influences access and utilization of the service is possible. Prior research in palliative care access and utilization has not assessed knowledge of palliative care, though many studies have suggested that knowledge deficits contribute to underutilization of these services. Creating a scale that measures knowledge about palliative care is a critical first step toward understanding and combating potential barriers to access and utilization of this life-improving service.

The presence of a child afflicted with a life-threatening illness is a difficult situation for the child's siblings, especially when their own needs are left unmet. The present article describes the first three phases of research involved in the conceptualization, development, and content validation of an initial version of the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically ill Children].

The first phase of the development of this instrument was conducted using qualitative methodology (focus groups: 6 siblings, 8 parents). The second phase consisted of validating the content of a pool of items developed according to the needs identified in the first phase. Some 21 participants (3 psychometricians, 3 researchers, 9 clinicians, and 6 siblings) evaluated each item for relevance and clarity. Finally, during the third phase, the acceptability and administration procedures of the preliminary version of the instrument were assessed qualitatively by five siblings.

The first phase led to production of a typology made up of 43 needs in 10 different environments. The second phase allowed for selection of the items that were clearest and most relevant, based on expert opinion. This procedure gave rise to a first version of the IBesFEMS, which consisted of 48 items.

The IBesFEMS appears to be a promising tool for specifically assessing the needs of the adolescent siblings of seriously ill children.