Delirium is a frequently encountered psychiatric disease in terminal cancer patients. However, the mechanism of delirium is unclear. The aim of our study was to investigate the relationship between administration of chemotherapy drugs that penetrate the blood–brain barrier (BBB) and the development of delirium in cancer patients.

We retrospectively analyzed 166 cancer patients (97 males, 69 females) continuously who died between September of 2007 and January of 2010 using a review of medical charts. Multiple logistic regression analysis was employed to investigate the effects of antineoplastic drugs penetrating the BBB on development of delirium in cancer patients with control for other risk factors.

In multivariate analysis, antineoplastic drugs that penetrated the BBB were significantly associated with development of delirium (OR = 18.92, CI95 = 1.08–333.04, p < 0.001).

The use of chemotherapy drugs that penetrate the BBB may be a risk factor for delirium. This information may allow palliative care doctors and medical oncologists to predict which patients are at increased risk for delirium.

Clinical practice aims to respect patient autonomy by basing treatment decisions for incapacitated patients on their own preferences. Yet many patients do not complete an advance directive, and those who do frequently just designate a family member to make decisions for them. This finding raises the concern that clinical practice may be based on a mistaken understanding of patient priorities. The present study aimed to collect systematic data on how patients prioritize the goals of treatment decision making.

We employed a self-administered, quantitative survey of patients in a tertiary care center.

Some 80% or more of the 1169 respondents (response rate = 59.8%) ranked six of eight listed goals for treatment decision making as important. When asked which goal was most important, 38.8% identified obtaining desired or avoiding unwanted treatments, 20.0% identified minimizing stress or financial burden on their family, and 14.6% identified having their family help to make treatment decisions. No single goal was designated as most important by 25.0% of participants.

Patients endorsed three primary goals with respect to decision making during periods of incapacity: being treated consistent with their own preferences; minimizing the burden on their family; and involving their family in the decision-making process. However, no single goal was prioritized by a clear majority of patients. These findings suggest that advance care planning should not be limited to documenting patients' treatment preferences. Clinicians should also discuss and document patients' priorities for how decisions are to be made. Moreover, future research should evaluate ways to modify current practice to promote all three of patients primary goals for treatment decision making.

To explore and document the needs of family caregivers of patients dying with dementia and to identify how healthcare professionals can adequately support them.

We employed a cross-sectional survey containing open-ended questions that were analyzed using qualitative methods.

Receiving information about the diagnosis and disease trajectory of dementia is essential for the caregiving families of people dying with the disease. However, at present the communication of information offered by professionals is not experienced as satisfying. Further aspects that require improvement concern issues related to time constraints, as well as practical and emotional support from professionals in the care setting. Family members would also like professionals to better assist them during and after the dying process.

Family members face multiple burdens while caring for their demented relatives and need more professional support during the course of the disease trajectory as well as in the terminal phase.

This study examines religion and spirituality among advanced cancer patients from an underserved, ethnically-diverse population by exploring patient conceptualizations of religion and spirituality, the role of religion and spirituality in coping with cancer, and patient interest in spiritual support.

Qualitative semi-structured interviews were conducted with patients who had participated in a study of a “mind-body” support group for patients with all cancer types. Analysis based on grounded theory was utilized to identify themes and theoretical constructs.

With regard to patient conceptualizations of religion and spirituality, three categories emerged: (1) Spirituality is intertwined with organized religion; (2) Religion is one manifestation of the broader construct of spirituality; (3) Religion and spirituality are completely independent, with spirituality being desirable and religion not. Religion and spirituality played a central role in patients' coping with cancer, providing comfort, hope, and meaning. Patients diverged when it came to spiritual support, with some enthusiastic about interventions incorporating their spiritual values and others stating that they already get this support through religious communities.

Spirituality plays a central role in the cancer experience of this underserved ethnically-diverse population. While spirituality seems to be a universal concern in advanced cancer patients, the meaning of spirituality differs across individuals, with some equating it with organized religion and others taking a more individualized approach. It is important that psychosocial interventions are developed to address this concern. Future research is needed to further explore the different ways that patients conceptualize spirituality and to develop spiritually-based treatments that are not “one size fits all.”

Depression is a serious issue for cancer patients, resulting in impaired quality of life and probably shorter survival. However, many cancer patients with depression are not treated because of the difficulties in identifying depression within this population. Our study aimed to examine caregivers' perceptions of depression among advanced cancer patients.

This qualitative study employed semistructured interviews, and we analyzed data using grounded theory and qualitative methods. We recruited caregivers from our palliative care unit (PCU) at an academic medical center.

We interviewed a total of 15 caregivers. Cancer patients' caregivers had a good theoretical knowledge of depression but also acknowledged that, in the context of cancer and because of their relationship with the patient, identification of depressive symptoms could be challenging. They considered themselves as partners in the patient's care with a supportive role. However, by assuming the role of partner in patient care, caregivers exposed themselves to emotional difficulties and an increased need for support and information.

Our results suggest a significant impact of depression in advanced cancer caregivers, and it is therefore crucial that healthcare professionals develop educational programs targeting cancer patients' families as well as specific interventions to minimize the impact of the burden of patient care on caregivers.

Delirium is characterized by disturbances of consciousness and changes in cognition that develop rapidly and fluctuate. It is common in palliative care, affecting up to 88% of patients with advanced cancer, yet often remains insufficiently diagnosed and managed. This study sought to compare rates of screening, documentation, and management of delirium across three palliative care settings — two hospices and one hospital team — and to determine whether definitive documentation of delirium as a diagnosis is associated with improved management of the disorder.

A retrospective review of patient case notes was performed in three U.K. palliative care settings for the presence of: cognitive screening tools on first assessment; the term “delirium” as a stated documented diagnosis; documented terms, descriptions, and synonyms suggestive of delirium; and management plans aimed at addressing delirium.

We reviewed 319 notes. The prevalence of delirium as a documented diagnosis ranged from 0 to 8.4%, rising to 35.7–39.2% when both documented delirium and descriptions suggestive of delirium were taken into account. An abbreviated mental test score (AMTS) was determined for 19.6 (H1) and 26.8% (H2) of hospice admissions and for 0% of hospital assessments. Symptoms suggestive of delirium were managed in 56.3% of cases in hospital, compared with 66.7 (H1) and 72.2% (H2) in hospices.

Use of the term “delirium” was infrequent in both hospital and hospice palliative care settings, as was the use of routine screening. Many identified cases did not receive targeted management. The definitive use of the term as a diagnosis was associated with clearer management plans in hospital patients. The authors suggest that better screening and identification remains the first step in improving delirium management.

When one explores the paths that sick people follow in search of meaning and a cure, one is quite likely to encounter religious knowledge and practices. Examining this facet and the spiritual experiences that arise therein leads us to the subject of identity, which systematically comes up as soon as we consider the impact of serious illness on people's lives. We need to follow the identity-building process that occurs in the disease, ruptures, and redefinitions if we are to understand how religious practices and knowledge contribute to the process.

This article discusses these elements using data collected in a qualitative research study of 10 cancer patients, carried out in Québec. Drawing on the sociology of religions, particularly the contemporary transformation of the religious and the spiritual, we attempted to understand the patients' spiritual experiences by focusing on the self-discovery that occurred through the initiatory ordeal of their illness.

We observe that these resources are particularly helpful when the patients use them to turn inwards, to pay attention to themselves, to unite the mind and body, to connect with something greater than themselves, and to transform their values so as to develop a new psychosocial version of themselves.

Our analysis shows that there is a complementary relationship between religion and illness at the crossroad of the identity-building process. This relevance demands to be attentive to the initiatory process that leads to the self-discovery and a renewal of the relationship with the self.

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

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

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

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

Caregivers play a key role in the management of patients with cancer. However, some studies have suggested that caregivers have even more unmet needs than the patients.

To better identify the needs and changes in the lifestyles of the caregivers in our practice and to plan a targeted support project to decrease caregiver burden, we administered the Caregiver's QoL Index–Cancer (CQoLC) to 200 consecutive caregivers. This questionnaire assesses psychological well-being, the relationship with healthcare professionals, administration of finances, lifestyle disruption, and positive adaptation.

Our data showed that being a caregiver to a patient with metastatic disease negatively affected females mostly with regard to mental and emotional burden, while men complained more about their sexual life (42.3 vs. 33.6%), although this result was not significant. Some 93.5% of caregivers reported that they were pleased with their role, while 83.4% were concerned about financial difficulties.

We strongly believe that early supportive care directed not only at patients but also to caregivers may improve the quality of life (QoL) in this population. We are currently developing a targeted support project to decrease caregiver burden.

There is no standardized and universally accepted pain classification system for the assessment and management of cancer pain in both clinical practice and research studies. The Edmonton Classification System for Cancer Pain (ECS–CP) is an assessment tool that has demonstrated value in assessing pain characteristics and response. The purpose of our study was to determine the relationship between negative ECS–CP features and some pain-related variables like pain intensity and opioid use. We also explored whether the number of negative ECS–CP features was associated with higher pain intensity.

The electronic charts of 100 patients at an outpatient supportive care clinic in a comprehensive cancer center were reviewed for variables like patient characteristics, initial ECS–CP assessment, morphine equivalent daily dose (MEDD), opioid rotation, Edmonton Symptom Assessment Score (ESAS), and use of adjuvant analgesics.

Some 91 of the 100 charts were eligible for analysis. The most common primary cancer type was gastrointestinal (22.1%). The median pain intensity was 6, and the median MEDD was 45 mg. Neuropathic pain was associated with higher median pain intensity (7 vs. 5, p = 0.007) and median MEDD requirement (83 vs. 30, p = 0.013). Psychological distress was associated with higher median pain intensity (7 vs. 5, p = 0.042). Incident pain was also associated with a trend toward higher pain intensity (6 vs. 5, p = 0.06). A higher number of negative ECS–CP features was associated with higher pain intensity (p = 0.01).

The ECS–CP was successfully completed in the majority of patients, demonstrating its utility in routine clinical practice. Neuropathic pain and psychological distress were associated with higher pain intensity. Also, neuropathic pain was associated with a higher MEDD. A higher sum of negative ECS–CP features was associated with higher pain intensity. Further studies will be needed to verify and explore these observations.

When infants are at risk of being born at a very premature gestation (22–25 weeks), parents face important life-support decisions because of the high mortality for such infants. Concurrently, providers are challenged with providing parents a supportive environment within which to make these decisions. Practice guidelines for medical care of these infants and the principles of perinatal palliative care for families can be resources for providers, but there is limited research to bridge these medical and humanistic approaches to infant and family care. The purpose of this article is to describe how parents at risk of delivering their infant prior to 26 weeks gestation interpreted the quality of their interpersonal interactions with healthcare providers.

Directed content analysis was employed to perform secondary analysis of data from 54 parents (40 mothers and 14 fathers) from the previously coded theme “Quality of Interactions.” These categorized data described parents' encounters, expectations, and experiences of interactions that occurred prenatally with care providers. For this analysis, Swanson's theory of caring was selected to guide analysis and to delineate parents' descriptions of caring and uncaring interactions.

Parents' expectations for caring included: (a) respecting parents and believing in their capacity to make the best decisions for their family (maintaining belief); (b) understanding parents' experiences and their continued need to protect their infant (knowing); (c) physically and emotionally engaging with the parents (being with); (d) providing unbiased information describing all possibilities (enabling); and (e) helping parents navigate the system and creating a therapeutic environment for them in which to make decisions (doing for).

Understanding parents' prenatal caring expectations through Swanson's theory gives deeper insights, aligning their expectations with the palliative care movement.

Music-thanatology is a palliative modality that uses harp and voice to provide bedside vigils, particularly for terminally ill or actively dying. We sought to determine the benefits of music vigils for terminally ill patients.

Survey of 55 family members, whose terminally ill loved one experienced a music vigil during hospitalization, regarding effects on the patient's breathing, relaxation, comfort, pain and ability to sleep. Written comments on negative and positive results of the vigils were coded using content analysis.

Family members perceived that the vigils resulted in modest improvement in the patients' breathing, relaxation, comfort, and ability to sleep, with fewer positive effects on pain, and almost no negative effects. Open ended comments focused on the positive benefit in increasing calm, relaxation, comfort. Comments on the positive effects for the family were almost as common as comments on the positive results for the patient.

The use of music-vigils in palliative care should be investigated more extensively as our study supports that this intervention has benefits, almost no risk, minimal cost, and may improve patient-family experience of the dying process.

Admission of a cancer patient to a palliative unit when near the final stage of their disease trajectory undoubtedly impacts their relatives. The aim of our study was to illuminate and interpret relatives' lived experiences of health personnel's provision of care in a palliative ward.

A phenomenological/hermeneutic approach was employed that was inspired by the philosophical tradition of Heidegger and Ricoeur and further developed by Lindseth and Nordberg. The perspectives of the narrator and the text were interpreted by highlighting relatives' views on a situation in which they have to face existential challenges. The analysis was undertaken in three steps: naïve reading, structural analysis, and comprehensive understanding, including the authors' professional experiences and theoretical background.

Six subthemes appeared: the dying person, the bubble, the sight, the cover, the provision for children's needs, and the availability of immediate help. These components were further constructed into three themes: the meaning of relating, the meaning of action, and the meaning of resources. Our comprehensive understanding of the results suggests that the most important theme is “acting with dedication and expertise.”

The following aspects are crucial for relatives of cancer patients hospitalized in a palliative ward: time and existence, family dynamics, and care adjusted to the situation. Our study results led to reflections on the impact of how nurses behave when providing care to patients during the palliative phase, and how they interact with relatives in this situation. We found that cancer patients in a palliative unit most appreciate nurses who act with dedication and expertise.

Surrogates involved in decisions to limit life-sustaining treatment for a loved one in the intensive care unit (ICU) are at increased risk for adverse psychological outcomes that can last for months to years after the ICU experience. Post-ICU interventions to reduce surrogate distress have not yet been developed. We sought to (1) describe a conceptual framework underlying the beneficial mental health effects of storytelling, and (2) present formative work developing a storytelling intervention to reduce distress for recently bereaved surrogates.

An interdisciplinary team conceived the idea for a storytelling intervention based on evidence from narrative theory that storytelling reduces distress from traumatic events through emotional disclosure, cognitive processing, and social connection. We developed an initial storytelling guide based on this theory and the clinical perspectives of team members. We then conducted a case series with recently bereaved surrogates to iteratively test and modify the guide.

The storytelling guide covered three key domains of the surrogate's experience of the patient's illness and death: antecedents, ICU experience, and aftermath. The facilitator focused on the parts of a story that appeared to generate strong emotions and used nonjudgmental statements to attend to these emotions. Between September 2012 and May 2013, we identified 28 eligible surrogates from a medical ICU and consented 20 for medical record review and recontact; 10 became eligible, of whom 6 consented and completed the storytelling intervention. The single-session storytelling intervention lasted from 40 to 92 minutes. All storytelling participants endorsed the intervention as acceptable, and five of six reported it as helpful.

Surrogate storytelling is an innovative and acceptable post-ICU intervention for recently bereaved surrogates and should be evaluated further.

Despite treatment availability, many cancer patients experience severe pain. Although patient assessments of care are increasingly employed to evaluate quality of care, little is known about its association with cancer symptom burden. The objective of our study was to examine the association between patient-reported quality of care and pain severity in a nationally representative cohort of cancer patients.

Quality of care was measured in three domains: physician communication, care coordination/responsiveness, and nursing care. Quality scores were dichotomized as optimal versus nonoptimal. Pain was measured on a scale of 0 (least) to 100 (worst). We utilized multivariable linear regression to examine the association between patient-reported quality of care and pain severity.

The analytic sample included 2,746 individuals. Fifty and 54% of patients, respectively, rated physician communication and care coordination/responsiveness as nonoptimal; 28% rated nursing care as nonoptimal. In adjusted models, rating physician communication as nonoptimal (versus optimal) was associated with a 1.8-point higher pain severity (p = 0.018), and rating care coordination/responsiveness as nonoptimal was associated with a 2.2-point higher pain severity (p = 0.006).

Patient-reported quality of care was significantly associated with pain severity, although the differences were small. Interventions targeting physician communication and care coordination/responsiveness may result in improved pain control for some patients.

Hospice patients often struggle with loss of meaning, while many experience meaningful dreams. The purpose of this study was to conduct a preliminary exploration into the process and therapeutic outcomes of meaning-centered dream work with hospice patients.

A meaning-centered variation of the cognitive–experiential model of dream work (Hill, 1996; 2004) was tested with participants. This variation was influenced by the tenets of meaning-centered psychotherapy (Breitbart et al., 2012). A total of 12 dream-work sessions were conducted with 7 hospice patients (5 women), and session transcripts were analyzed using the consensual qualitative research (CQR) method (Hill, 2012). Participants also completed measures of gains from dream interpretation in terms of existential well-being and quality of life.

Participants' dreams generally featured familiar settings and living family and friends. Reported images from dreams were usually connected to feelings, relationships, and the concerns of waking life. Participants typically interpreted their dreams as meaning that they needed to change their way of thinking, address legacy concerns, or complete unfinished business. Generally, participants developed and implemented action plans based on these interpretations, despite their physical limitations. Participants described dream-work sessions as meaningful, comforting, and helpful. High scores on a measure of gains from dream interpretation were reported, consistent with qualitative findings. No adverse effects were reported or indicated by assessments.

Our results provided initial support for the feasibility and helpfulness of dream work in this population. Implications for counseling with the dying and directions for future research were also explored.

Continuous deep sedation (CDS) is a way to reduce conscious experience of symptoms of severe suffering in terminally ill cancer patients. However, there is wide variation in the frequency of its reported. So we conducted a retrospective analysis to assess the prevalence and features of CDS in our palliative care unit (PCU).

We performed a systemic retrospective analysis of the medical and nursing records of all 1581 cancer patients who died at the PCU at Higashi Sapporo Hospital between April 2005 and August 2011. Continuous deep sedation can only be administered safely and appropriately when a multidisciplinary team is involved in the decision-making process. Prior to administration of CDS, a multidisciplinary team conference (MDTC) was held with respect to all the patients considered for CDS by an attending physician. The main outcome measures were the frequency and characteristics of CDS (patient background, all target symptoms, medications used for sedation, duration, family's satisfaction, and distress). We mailed anonymous questionnaires to bereaved families in August 2011.

Of 1581 deceased patients, 22 (1.39%) had received CDS. Physical exhaustion 8 (36.4%), dyspnea 7 (31.8%), and pain 5 (22.7%) were the most frequently mentioned indications. Continuous deep sedation had a duration of less than 1 week in 17 (77.3%). Six patients (0.38%) did not meet the appropriate criteria for CDS according to the MDTC and so did not receive it. Although bereaved families were generally comfortable with the practice of CDS, some expressed a high level of emotional distress.

Our results indicate that the prevalence of CDS will be decreased when it is carried out solely for appropriate indications. Continuity of teamwork, good coordination, exchange of information, and communication between the various care providers are essential. A lack of any of these may lead to inadequate assessment, information discrepancies, and unrest.

Many cancer patients report changes in how they experience meaning in life and being confronted with life's limitations, understanding themselves as being vulnerable, finite, and free beings. Many would like to receive psychotherapeutic help for this. However, psychotherapy for these concerns often either focuses primarily on meaning in life (e.g., meaning-centered/logotherapy) or on existential givens (e.g., supportive–expressive therapy). The relationship between meaning in life and existential givens seems relatively unexplored, and it seems unclear how therapists can integrate them. The present article aims to explore the relationship between meaning and existential givens.

Martin Heidegger was a founder of existentialism, inspiring both meaning therapies and supportive–expressive therapies. Therefore, we systematically apply his understanding of these phenomena, elucidated by four elements in his central metaphor of “the house.”

(1) Walls: In everyday life, we construct ordinary meanings, like the walls of a house, to protect us from our surroundings, wind, and rain. (2) Surroundings (“existential givens”): Confronted with cancer, the meanings/walls of this house may collapse; people may start seeing their surroundings and understand that they could have built their house at a different location, that is, they understand the broad range of possibilities in life, their responsibility to choose, and the contingency of current meanings. (3) How to design, build, and dwell: People may design, build, and dwell in their house in different ways: they may lock themselves in their house of impermeable “ordinary meanings” and deny the existence of existential surroundings; they may feel overwhelmed by all possibilities and be unable to experience meaning; they may build the house as their true home, use life's possibilities, and listen to their true self by building permeable “existential meanings.” (4). Navigator: People may experience inner guidance to navigate in designing, building, and dwelling in this house.

Meaning in life and existential givens are intertwined. Therefore, we suggest that it is necessary for psycho-oncologists to address both. Further clinical validation is required.

The overall aim of this study was to discover how chaplains assess their role within ethically complex end-of-life decisions.

A questionnaire was sent to 256 chaplains working for German health care institutions. Questions about their role and satisfaction as well as demographic data were collected, which included information about the chaplains' integration within multi-professional teams.

The response rate was 59%, 141 questionnaires were analyzed. Respondents reported being confronted with decisions concerning the limitation of life-sustaining treatment on average two to three times per month. Nearly 74% were satisfied with the decisions made within these situations. However, only 48% were satisfied with the communication process. Whenever chaplains were integrated within a multi-professional team there was a significantly higher satisfaction with both: the decisions made (p = 0.000) and the communication process (p = 0.000).

Although the results of this study show a relatively high satisfaction among surveyed chaplains with regard to the outcome of decisions, one of the major problems seems to reside in the communication process. A clear integration of chaplains within multi-professional teams (such as palliative care teams) appears to increase the satisfaction with the communication in ethically critical situations.

The two goals of our study were to (1) identify which of five types of social support (Informational, Esteem, Emotional, Tangible, Belonging) are most cited by hospice nurses and family caregivers and (2) determine the match in perception of support needs.

As part of a larger multiphase project, focus groups were conducted with former family caregivers and hospice nurses to discuss their experiences of home hospice care and to gather their opinions on the important issues involved in that care. Transcripts of focus group discussions were coded for support type (Informational, Esteem, Emotional, Tangible, Belonging) based on definitions from the literature. Nurse and caregiver data were compared to assess for potential match.

Analysis of coded data suggested that nurses see different types of support to be needed in equal measure across their caseloads, while caregivers expressed priorities for some types of support. Illustrative examples of each type of support are provided and discussed.

Because matching support provided with the type of support desired has been linked to improved physical and psychological outcomes, it is important to focus on this match in healthcare populations particularly vulnerable to psychological stress, including family caregivers of home hospice patients. This research has implications for interventions to match support provision to caregiver needs, or for education for home hospice providers to ensure that they are not only sensitive to the possibility of a broad range of needs but also to the necessity to tailor care to those needs.