A model of psychosocial care specific for patients with multiple myeloma and their caregivers has not yet been proposed. We sought to develop a model of care that considers the specific profile of this disease.

The authors, representing a multidisciplinary care team, met in December of 2012 to identify a model of psychosocial care for patients with multiple myeloma and their caregivers. This model was determined by consensus during the meeting and via total agreement following the meeting. The meeting was sponsored by Onyx Pharmaceuticals.

The need for targeted psychosocial care for the multiple myeloma patient and caregiver throughout the disease process is essential to ensure quality of life and optimal treatment outcomes. We propose herein the first known model of care for the treatment of multiple myeloma that engages both the patient and their caregivers.

Innovative partnerships between psychosocial providers and other entities such as pharmaceutical companies can maximize resources for comprehensive program development. This manuscript proposes a model of care that promotes active engagement in therapies for multiple myeloma while engaging the individual patient and their family caregivers. This treatment approach must be evidence based in terms of distress screening tools, comprehensive psychosocial assessments, and, most importantly, in the interventions and measurements of response that clinicians apply to this population.

Previous literature has suggested that laws and regulations may impact the use of palliative sedation. Our present study compares the attitudes of French-speaking physicians practicing in the Quebec and Swiss environments, where different laws are in place regarding physician-assisted suicide.

Data were drawn from two prior studies, one by Blondeau and colleagues and another by Beauverd and coworkers, employing the same two-by-two experimental design with length of prognosis and type of suffering as independent variables. Both the effect of these variables and the effect of their interaction on Swiss and Quebec physicians' attitudes toward sedation were compared. The written comments of respondents were submitted to a qualitative content analysis and summarized in a comparative perspective.

The analysis of variance showed that only the type of suffering had an effect on physicians' attitudes toward sedation. The results of the Wilcoxon test indicated that the attitudes of physicians from Quebec and Switzerland tended to be different for two vignettes: long-term prognosis with existential suffering (p = 0.0577) and short-term prognosis with physical suffering (p = 0.0914). In both cases, the Swiss physicians were less prone to palliative sedation.

The attitudes of physicians from Quebec and Switzerland toward palliative sedation, particularly regarding prognosis and type of suffering, seem similar. However, the results suggest that physicians from Quebec could be slightly more open to palliative sedation, even though most were not in favor of this practice as an answer to end-of-life existential suffering.

Our study aimed at examining nurses' perceptions of depression in cancer patients and their role in its management.

We employed questionnaire-based semi-directed interviews. Participants were asked to classify 22 symptoms (related and specific to depression in cancer patients, related but not specific, and unrelated) as “very important,” “important,” “less important,” or “not important” for the diagnosis of depression in cancer patients at two different timepoints (baseline and after a video education program). They were also asked to complete a questionnaire exploring their perceptions about depression and of their role in its systematic screening. We recruited nurses caring for cancer patients from four different departments (palliative care unit, hematology, medical oncology, and thoracic oncology) at an academic medical center.

We interviewed 18 nurses and found that they had a good general knowledge of depression in cancer patients, with the majority of them being able to distinguish specific and important symptoms from nonspecific symptoms. Some nurses considered depression as a second-line symptom, and most did not employ a screening tool in their daily practice. All considered that they had a role to play in the management of depression, even as they acknowledged lacking specific training for that task.

Our results suggest that limited resources—especially lack of training—affects nurses' ability to correctly manage depression in their cancer patients.

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.

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.

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.

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 Family Evaluation of Hospice Care (FEHC) survey is widely employed by hospices, and several studies have examined this information to help inform and enhance end-of-life services. However, these studies have largely focused on examining relatively straightforward associations between variables and have not tested larger models that could reveal more complex effects. The present study aimed to examine the direct and mediating (i.e., via information/education, patient care, and family support) effects of demographic factors, length of stay, timing of referral, patient symptom severity, location of services, and relationship to caregiver on two outcome variables: overall satisfaction and caregiver confidence.

Surveys were collected from 3226 participants who had lost a loved one who received hospice services. Structural equation modeling was employed to examine the direct and mediating effects of the independent variables on the two outcomes of interest.

Participants reporting on racial minority patients, patients with more symptoms, and those referred too late or too early were the most likely to express some discontentment with hospice services. The information/education these individuals received was the only mediating factor significantly associated with caregiver confidence. More positive perceptions of patient care and information/education were both significantly related to greater overall satisfaction.

These findings help to (1) pinpoint those most at risk for being less satisfied with hospice, (2) identify which aspects of care may be most strongly related to overall outcomes, and (3) provide a model for examining complex associations among FEHC variables that may be employed by other researchers.

The aim of this study was to illuminate experiences of finding meaning in life among spouses of people with amyotrophic lateral sclerosis.

Thirteen interviews were analyzed with qualitative content analysis.

The spouses were struggling for meaning at the end of a dark tunnel. They felt limited and isolated in their proximity to death. They lived imprisoned lives, felt lonely, considered life to be unfair and incomplete, and mourned the loss of their future. However, they found meaning despite the proximity of death through cherishing their own lives, fellowship, accepting the present, and believing in meaning after the partner's death.

Meaning in life strengthened spouses' well-being and ability to find pleasure in a difficult situation. It also strengthened their will to live after the partner's death. Limitations and isolations were strong predictors of what could impair their well-being and the possibility of finding meaning after the partner's death. Spouses need individual support throughout the disease process and after the partner's death, to give them the strength to find meaning in life and prioritize what is important for them. Paying attention to what might prevent them from finding meaning could make it easier to help them in their situation. Providing joint support to the patient and spouse might also help them to see each other's situation, come together, and help each other.

We replicated a 1994 study that surveyed the state of supportive care services due to changes in the field and the increased need for such services. We provide an updated assessment, comparing the changes that have occurred and describing the current status of supportive care services in comprehensive cancer settings.

We used Coluzzi and colleague's 60-question survey from their 1995 Journal of Clinical Oncology article to frame the 98-question survey employed in the current study. Medical and palliative care directors for the 2011 National Cancer Institute (NCI) comprehensive cancer centers were surveyed regarding their supportive care services and their subjective review of the overall effectiveness of the services provided.

We achieved a 76% response rate (n = 31). The data revealed increases in the number of cancer beds in the hospitals, the degree of integration of supportive care services, the availability of complementary services, and the number of pain and palliative care services offered. There was also an overall shift toward centers becoming more patient centered, as 65% reported now having a patient and family advisory council. Our findings revealed a growing trend to offer distress screening for both outpatients and inpatients. Medical and palliative care directors' evaluations of the supportive care services they offered also significantly improved. However, the results revealed an ongoing gap in services for end-of-life care and timely referrals for hospice services.

Overall, both the quantity and quality of supportive care services in the surveyed NCI-designated cancer centers has improved.

In our context, existential plight refers to heightened concerns about life and death when people are diagnosed with cancer. Although the duration of existential plight has been proposed to be approximately 100 days, evidence from longitudinal studies raises questions about whether the impact of a diagnosis of advanced cancer may require a longer period of adjustment. The purpose of our study was to examine spiritual well-being (SpWB) and quality of life (QoL) as well as their interrelationship in 52 patients with advanced cancer after 100 days since the diagnosis at one and three months post-baseline.

The study was designed as a secondary data analysis of a cluster randomized clinical trial involving patients with stage 3 or 4 cancer undergoing treatment. SpWB was measured using the 12-item Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale (FACIT–Sp–12); common factor analyses revealed a three-factor pattern on the FACIT–Sp–12. Quality of life was measured with the Functional Assessment of Cancer Therapy–General (FACT–G). We limited our sample to participants assigned to the control condition (n = 52).

SpWB and QoL remained stable between one and three months post-baseline, which were a median of 112 and 183 days after diagnosis, respectively. SpWB was found to be associated with QoL more strongly than physical and emotional well-being. Peace and Meaning each contributed unique variance to QoL, and their relative importance shifted over time. Faith was positively related to QoL initially. This association became insignificant at three months post-baseline.

This study underscores the significance of SpWB for people newly diagnosed with advanced cancer, and it highlights the dynamic pattern of Peace, Meaning, and Faith in association with QoL. Our results confirm that patients newly diagnosed with advanced cancer experience an existential crisis, improve and stabilize over time. Future studies with larger samples over a longer period of time are needed to verify these results.

Assessment of delirium is performed with a variety of instruments, making comparisons between studies difficult. A conversion rule between commonly used instruments would aid such comparisons. The present study aimed to compare the revised Delirium Rating Scale (DRS–R98) and Memorial Delirium Assessment Scale (MDAS) in a palliative care population and derive conversion rules between the two scales.

Both instruments were employed to assess 77 consecutive patients with DSM–IV delirium, and the measures were repeated at three-day intervals. Conversion rules were derived from the data at initial assessment and tested on subsequent data.

There was substantial overall agreement between the two scales [concordance correlation coefficient (CCC) = 0.70 (CI95 = 0.60–0.78)] and between most common items (weighted κ ranging from 0.63 to 0.86). Although the two scales overlap considerably, there were some subtle differences with only modest agreement between the attention (weighted κ = 0.42) and thought process (weighted κ = 0.61) items. The conversion rule from total MDAS score to DRS–R98 severity scores demonstrated an almost perfect level of agreement (r = 0.86, CCC = 0.86; CI95 = 0.79–0.91), similar to the conversion rule from DRS–R98 to MDAS.

Overall, the derived conversion rules demonstrated promising accuracy in this palliative care population, but further testing in other populations is certainly needed.

Most palliative care efforts focus on assessing and improving the quality of life and quality of care for patients. Palliative care views the family as the unit of care; therefore, excellent comprehensive palliative care should also address the needs of the family and the caregiver(s). While the recent literature has offered detailed descriptions of caregiving needs in the home setting, it is crucial to describe the needs of family members who provide care for patients with advanced illness in an inpatient setting, where family members serve as the key intermediaries and decision makers. Therefore, we sought to define the relevant aspects of quality of experience for families of hospitalized patients.

We convened a series of focus groups to identify the domains important for the quality of experience of dying patients' family members. Participants included bereaved family members of patients who had died at a Veterans Administration (VA) or private academic medical center. We conducted four in-depth follow-up interviews to probe for additional details and validate our interpretation of the focus group findings.

Participants (n = 14) ranged in age from 46 to 83, with a mean of 62. All were female; 64% were Caucasian, 21% African American, and 14% did not report their ethnicity. Content analysis yielded 64 attributes of quality of family experience constituting eight domains: completion, symptom impact, decision making, preparation, relationship with healthcare providers, affirmation of the whole person, post-death care, and supportive services.

Our data have implications for clinical guidance in assisting family members in the inpatient palliative setting, which often includes patient incapacity for communication and decision making. They suggest the importance of developing corresponding methods to assist families with the tasks involved with life completion, being prepared for a crisis and imminent death, and post-death care. Provider communications and relationships are central to the processes of meeting the clinical needs of family members. Our findings should inform the development of measures to assess family experience.

Coping with cancer and its treatments has significant psychological implications for patients, and hospitalization can lead to emotional distress. Based on a community meeting (CM), a common therapeutic intervention in psychiatric wards, a unique patient–staff–caregiver group is held weekly on the radiotherapy unit of our hospital. The goals are to strengthen patient coping abilities and prompt open communications. The present study aimed at quantitatively estimating the effect of the community meeting by gauging the perceptions with respect to several therapeutic aspects.

A questionnaire was developed for patients who participated in CMs during their hospitalization based on four theoretical factors: illness perception, relations with the main caregiver, relations with other participants, and relations with unit staff.

Participants' general satisfaction with the meetings was found to be positive. The most significant aspect of the meetings, as perceived by participants, was relationships with the staff. Patients born in Israel perceived relationships with other participants more positively.

Attentive interaction with medical staff and open communications are highly important for patients and contribute to their general satisfaction with the meetings.

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

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

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

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

This study investigates the views on death among cancer patients in Japan and examines how these views are related to age, sex, and physical condition. We also investigate how these views are related to where patients would like to spend their final days and whether or not they would like to be told how long they have left to live.

We targeted 450 cancer patients receiving outpatient treatment in the radiology department at the University of Tokyo Hospital. We used the Death Attitudes Inventory (DAI) developed by Hirai to measure attitudes about death.

Of the 450 patients approached, we received responses from 310 (69% collection rate). The results of the t test and one-way ANOVA showed that, in terms of “death anxiety/fear,” the under-65 group (17.73 ± 6.69) scored significantly higher than the 65-and-over group (15.43 ± 7.69, t = 2.685, df = 280, p < 0.01); the group with KPS scores 70 or above (16.88 ± 7.21) scored higher than the group with KPS scores below 70 (12.73 ± 7.09, t = 2.168, df = 280, p = 0.03); and no significant difference was found for sex, metastasis, or treatment stage.

Our results demonstrate that, although views on death among cancer patients may differ according to sex, age, and physical condition, taking these factors into account when understanding such views can be useful in predicting where patients may wish to spend their final days.

We developed a specific cognitive–existential intervention to improve existential distress in nonmetastatic cancer patients. The present study reports the feasibility of implementing and evaluating this intervention, which involved 12 weekly sessions in both individual and group formats, and explores the efficacy of the intervention on existential and global quality of life (QoL) measures.

Some 33 nonmetastatic cancer patients were randomized between the group intervention, the individual intervention, and the usual condition of care. Evaluation of the intervention on the existential and global QoL of patients was performed using the existential well-being subscale and the global scale of the McGill Quality of Life (MQoL) Questionnaire.

All participants agreed that their participation in the program helped them deal with their illness and their personal life. Some 88.9% of participants agreed that this program should be proposed for all cancer patients, and 94.5% agreed that this intervention helped them to reflect on the meaning of their life. At post-intervention, both existential and psychological QoL improved in the group intervention versus usual care (p = 0.086 and 0.077, respectively). At the three-month follow-up, global and psychological QoL improved in the individual intervention versus usual care (p = 0.056 and 0.047, respectively).

This pilot study confirms the relevance of the intervention and the feasibility of the recruitment and randomization processes. The data strongly suggest a potential efficacy of the intervention for existential and global quality of life, which will have to be confirmed in a larger study.

Although “fatigue” and “depression” are well-accepted clinical terms in the English language, they are ill defined in many other languages, including Portuguese. We aimed to investigate the most appropriate words to describe cancer-related fatigue (CRF) and depression in Brazilian cancer patients.

The interviewers read to patients two clinical vignettes describing fatigued patients and two others describing depressed patients. Participants were asked to choose from among “fatigue,” “tiredness,” “weakness,” “depression,” and “sadness” the best and worst terms to explain the vignettes. In addition, they were administered an instrument containing numeric rating scales (NRSs), addressing common symptoms, including the aforementioned terms. Pearson correlation analysis and accuracy diagnostic tests were conducted using the Hospital Anxiety and Depression Scale (HADS) and the Functional Assessment of Cancer Treatment–Fatigue (FACIT–F) as references.

Among the 80 participants, 40% reported that the best term to explain the concept of CRF was “tiredness,” and 59% chose “sadness” as the best descriptor of depression. Regarding diagnostic accuracy, the areas under the curve (AUCs) for “fatigue,” “weakness,” and “tiredness” were 0.71, 0.81, and 0.76, respectively; the AUCs for “depression” and “sadness” ranged from 0.81 to 0.91 and 0.73 to 0.83, respectively. Negative correlations were found among FACIT–F fatigue subscale scores and NRS scores for “fatigue” (r = –0.58), “tiredness” (r = –0.67), and “weakness” (r = –0.62). Regarding depression, there were positive correlations between HADS–D scores and both NRS for “depression” (r = 0.61) and “sadness” (r = 0.54).

“Tiredness” was considered the best descriptor of CRF. Taking into consideration the clinical correlation with depression scores, the term “depression” was accepted as the best term to explain the concept of depression.

The purpose of this study was to assess the factors that predict the effectiveness of palliative care in patients with advanced cancer.

Cross-sectional data were collected from 240 patients recruited from three tertiary care hospitals in Bangkok and suburban Thailand aged 18 years or older who were willing to participate; able to speak, read, and write Thai; were not receiving aggressive cancer treatment; and had been diagnosed with advanced-stage cancer. Participants were asked to complete a Personal Information Questionnaire (PIQ), a Palliative Care Assessment Form (PCAF), and the Spiritual Well-Being Scale (SWBS).

The significant predictors of the effectiveness of palliative care in patients with advanced cancer were found to be spiritual well-being (p = 0.000) and palliative care strategies: a combination of pharmacological and psychosocial care, mind–body intervention, and spiritual care; physical management; and traditional medicine, herbal treatment, and diet management (p = 0.027). The likelihood of effectiveness for patients whose spiritual well-being and palliative care strategies scores increased by an average of one point increased by factors of 1.058 and 2.271, respectively.

These findings suggest that patients who experienced better spiritual well-being and who employed a variety of palliative care strategies also experienced enhanced effectiveness of palliative care.

The recently validated Cornell Assessment for Pediatric Delirium (CAPD) is a new rapid bedside nursing screen for delirium in hospitalized children of all ages. The present manuscript provides a “developmental anchor points” reference chart, which helps ground clinicians' assessment of CAPD symptom domains in a developmental understanding of the presentation of delirium.

During the development of this CAPD screening tool, it became clear that clinicians need specific guidance and training to help them draw on their expertise in child development and pediatrics to improve the interpretative reliability of the tool and its accuracy in diagnosing delirium. The developmental anchor points chart was formulated and reviewed by a multidisciplinary panel of experts to evaluate content validity and include consideration of sick behaviors within a hospital setting.

The CAPD developmental anchor points for the key ages of newborn, 4 weeks, 6 weeks, 8 weeks, 28 weeks, 1 year, and 2 years served as the basis for training bedside nurses in scoring the CAPD for the validation trial and as a multifaceted bedside reference chart to be implemented within a clinical setting. In the current paper, we discuss the lessons learned during implementation, with particular emphasis on the importance of collaboration with the bedside nurse, the challenges of establishing a developmental baseline, and further questions about delirium diagnosis in children.

The CAPD with developmental anchor points provides a validated, structured, and developmentally informed approach to screening and assessment of delirium in children. With minimal training on the use of the tool, bedside nurses and other pediatric practitioners can reliably identify children at risk for delirium.