Of the few studies that have paid attention to feelings of reward in family palliative caregiving, most are retrospective and examine the experiences of bereaved family caregivers. Although feeling rewarded has been described as an influence that may facilitate the way family caregivers handle the caregiving situation, no study has sought to identify the factors associated with feelings of reward while providing ongoing family palliative care. The aim of this study, therefore, was to identify influential factors in feelings of reward experienced by family palliative caregivers.

Our study had a correlational cross-sectional design. Family caregivers (n = 125) of patients receiving specialized palliative care were consecutively recruited from four settings. These caregivers answered a questionnaire that included the Rewards of Caregiving Scale (RCS). This questionnaire included questions about demographic background and scales to measure preparedness for caregiving, feelings of hope, perceived health, and symptoms of anxiety and depression. Correlation and regression analyses were conducted to identify factors associated with rewards.

The results demonstrated that the more prepared caregivers with higher levels of hope felt more rewarded, while caregivers with higher levels of anxiety and those in a spousal relationship with the patient felt less rewarded by caregiving.

It seems reasonable that feeling rewarded can be a significant contributor to the overall experience of providing ongoing palliative care. The situation of family caregivers has been shown to be multifaceted and complex, and such covariant factors as preparedness, anxiety, hope, and being in a spousal relationship with the patient to influence this experience.

Impaired fertility and reproductive health after cancer treatment is an important quality-of-life issue among female childhood cancer survivors (CCSs). This study aims to measure female CCSs' knowledge about their reproductive health and their exposure to and views about reproductive counseling (RC).

This is a cross-sectional, web-survey study of female CCSs aged 18 to 45 years who were diagnosed with cancer before age 21 years and currently had no evidence of disease.

Fifty-six CCSs participated (response rate = 48%; mean current age = 26). Knowledge about reproductive health after cancer treatment was severely limited within this sample of highly educated survivors (91% educated beyond high school), who provided correct answers only 32% of the time. Only 9 and 5% of the women had pursued RC with a fertility specialist before and after cancer treatment, respectively. The majority thought they had not been provided enough information about reproductive health. White ethnicity (p < 0.001), higher annual income (p = 0.007), and higher education level (p = 0.02) were significantly associated with a positive opinion about RC.

A limited number of CCSs took advantage of RC in spite of their high interest in and limited knowledge about reproductive issues. Targeted referrals for RC may allow for improved decision making about reproductive options.

Distinguishing the unique contributions and roles of chaplains as members of healthcare teams requires the fundamental step of articulating and critically evaluating conceptual models that guide practice. However, there is a paucity of well-described spiritual assessment models. Even fewer of the extant models prescribe interventions and describe desired outcomes corresponding to spiritual assessments.

This article describes the development, theoretical underpinnings, and key components of one model, called the Spiritual Assessment and Intervention Model (Spiritual AIM). Three cases are presented that illustrate Spiritual AIM in practice. Spiritual AIM was developed over the past 20 years to address the limitations of existing models. The model evolved based in part on observing how different people respond to a health crisis and what kinds of spiritual needs appear to emerge most prominently during a health crisis.

Spiritual AIM provides a conceptual framework for the chaplain to diagnose an individual's primary unmet spiritual need, devise and implement a plan for addressing this need through embodiment/relationship, and articulate and evaluate the desired and actual outcome of the intervention. Spiritual AIM's multidisciplinary theory is consistent with the goals of professional chaplaincy training and practice, which emphasize the integration of theology, recognition of interpersonal dynamics, cultural humility and competence, ethics, and theories of human development.

Further conceptual and empirical work is needed to systematically refine, evaluate, and disseminate well-articulated spiritual assessment models such as Spiritual AIM. This foundational work is vital to advancing chaplaincy as a theoretically grounded and empirically rigorous healthcare profession.

Delirium affects all higher cortical functions supporting complex information processing consistent with widespread neural network impairment. We evaluated the relative prominence of delirium symptoms throughout episodes to assess whether impaired consciousness is selectively affecting certain brain functions at different timepoints.

Twice-weekly assessments of 100 consecutive patients with DSM-IV delirium in a palliative care unit used the Delirium Rating Scale Revised-98 (DRS-R98) and Cognitive Test for Delirium (CTD). A mixed-effects model was employed to estimate changes in severity of individual symptoms over time.

Mean age = 7 0.2 ± 10.5 years, 51% were male, and 27 had a comorbid dementia. A total of 323 assessments (range 2–9 per case) were conducted, but up to 6 are reported herein. Frequency and severity of individual DRS-R98 symptoms was very consistent over time even though the majority of patients (80%) experienced fluctuation in symptom severity over the course of hours or minutes. Over time, DRS-R98 items for attention (88–100%), sleep–wake cycle disturbance (90–100%), and any motor disturbance (87–100%), and CTD attention and vigilance were most frequently and consistently impaired. Mixed-effects regression modeling identified only very small magnitudes of change in individual symptoms over time, including the three core domains.

Attention is disproportionately impaired during the entire episode of delirium, consistent with thalamic dysfunction underlying both an impaired state of consciousness and well-known EEG slowing. All individual symptoms and three core domains remain relatively stable despite small fluctuations in symptom severity for a given day, which supports a consistent state of impaired higher cortical functions throughout an episode of delirium.

The notion of spirituality/religious belief is recognized internationally as a domain within end-of-life care and is important in patients' and carers' quality-of-life. When faced with incurable illness, patients often become more philosophical about their life; many seek comfort in spiritual or religious philosophies. Our intention was to understand how personal spirituality and religious faith might help those living with amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) cope with their impending death.

Unsolicited narratives (internet and print-published) written by individuals diagnosed with the terminal condition of ALS/MND were analyzed thematically. Narratives from 161 individuals diagnosed with ALS/MND written over a period of 37 years (from 1968 to 2005) were included.

Our findings reveal that religious faith sustains and helps people to avoid despair, and personal spirituality helps them make sense of what is happening to them.

The use of personal narratives by people with ALS/MND has provided a vehicle for sharing their deepest spiritual and religious thoughts with others. The place of spirituality and religious faith within ALS/MND care should not be underestimated. Assessment of religious or spiritual needs should become a routine part of practice and is the responsibility of all members of the multidisciplinary team.

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.

Our aim was to evaluate interrater reliability for the diagnosis of pediatric delirium by child psychiatrists.

Critically ill patients (N = 17), 0–21 years old, including 7 infants, 5 children with developmental delay, and 7 intubated children, were assessed for delirium using the Diagnostic and Statistical Manual–IV (DSM–IV) (comparable to DSM–V) criteria. Delirium assessments were completed by two psychiatrists, each blinded to the other's diagnosis, and interrater reliability was measured using Cohen's κ coefficient along with its 95% confidence interval.

Interrater reliability for the psychiatric assessment was high (Cohen's κ = 0.94, CI [0.83, 1.00]). Delirium diagnosis showed excellent interrater reliability regardless of age, developmental delay, or intubation status (Cohen's κ range 0.81–1.00).

In our study cohort, the psychiatric interview and exam, long considered the “gold standard” in the diagnosis of delirium, was highly reliable, even in extremely young, critically ill, and developmentally delayed children. A developmental approach to diagnosing delirium in this challenging population is recommended.

This study explores the end-of-life (EoL) beliefs, values, practices, and expectations of a select group of harder-to-reach Chinese women living in England.

A cultural safety approach was undertaken to interpret 11 in-depth, semistructured interviews. Interviews were conducted in Mandarin and Cantonese. Transcripts were translated and back-translated by two researchers. Findings were analyzed using the technical analytical principles of grounded theory.

The key themes generated from our analysis include: acculturation; differential beliefs and norms in providing care: family versus health services; language and communication; Eastern versus Western spiritual practices and beliefs; and dying, death, and the hereafter.

End-of-life discussions can be part of an arduous, painful, and uncomfortable process, particularly for migrants living on the margins of society in a new cultural setting. For some Chinese people living in the United Kingdom, end-of-life care requires attention to acculturation, particularly Western versus Eastern beliefs on religion, spirituality, burial practices, and provision of care, and the availability of culturally specific care, all of which encompass issues related to gender. Stories of a purposive sample of Chinese women were viewed through a cultural safety lens to gain a deeper understanding of how social and cultural norms and expectations, in addition to the pressures of acculturation, impact gendered roles and responsibilities. The analysis revealed variations between/within Eastern and Western culture that resulted in pronounced, and oftentimes gendered, differences in EoL care expectations.

Cancer patients and their caregivers often turn to the internet for information and support following a cancer diagnosis. Research shows a need for improvement in doctors' communication with patients about internet information. The purpose of this formative assessment was to evaluate oncology trainees' skills in talking about internet information with cancer patients.

Thirty-nine oncology trainees were evaluated in a baseline standardized patient assessment as part of their participation in the Comskil Training Program. As part of the assessment, standardized patients were instructed to raise the topic of internet information they had read. Transcriptions of the video-recorded assessments were coded for patient statements and trainee responses.

Fifty-six percent of trainees used a probe to get more information before addressing the content of the internet search, while 18% addressed it immediately. Eighteen percent of trainees warned the patient about using the internet, and 8% warned about and also encouraged internet use. Thirteen percent of trainees praised the patient for seeking out information on the internet.

This formative assessment indicated that the majority of trainees addressed the content of the internet search, while a minority addressed the internet as a tool and praised patients' efforts. Research in this area should examine the effectiveness of educational interventions for trainees to improve discussions about internet information.

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.

In this study, we examine whether a pathology clinic, conducted by pathologists, a novel medical tool that provides an explanation for the diagnosis of a cancer, can influence the mental state and adjustment of breast cancer patients.

We created a paper-based questionnaire and interviewed targeted breast cancer patients, who had undergone radical surgery, before and after they visited the clinic.

We found that there may be increased motivation for treatment, a greater sense of reassurance, and reduced anxiety (as indicated by the Hospital Anxiety and Depression Scale (HADS)) in the group that attended the clinic.

Our results suggest that visiting the pathology clinic may reduce anxiety over the short term. On the other hand, Mental Adjustment to Cancer (MAC) Anxious Preoccupation scores were significantly higher in this group as well, both before and after attendance, compared to the group that did not attend. The attending group may have reduced anxiety by such actions as collecting medical data on the cause of their anxiety and adopting healthier behaviors. Our findings suggest that appropriate emotional support and provision of medical information are very important in dealing with patient anxiety.

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.

To explore how patients experience being in the hospital environment and the meaning they assign to the environment during serious illness.

A qualitative study design was applied, and the data analysis was inspired by Ricoeur's phenomenological-hermeneutic theory of interpretation. Data were collected through multiple qualitative interviews combined with observations at a teaching hospital in Denmark from May to September 2011. A total of 12 patients participated.

The findings showed that the hospital environment has a strong impact on patients' emotions and well-being. They reported that aesthetic decorations and small cozy spots for conversation or relaxation created a sense of homeliness that reinforced a positive mood and personal strength. Furthermore, being surrounded by some of their personal items or undertaking familiar tasks, patients were able to maintain a better sense of self. Maintaining at least some kind of familiar daily rhythm was important for their sense of well-being and positive emotions.

The results stress the importance of an aesthetically pleasing and homelike hospital environment as part of palliative care, since the aesthetic practice and a sense of homeliness strengthened patients' experiences of well-being, relief, and positive emotions while in a vulnerable situation. Such knowledge could encourage the development of new policies regarding appropriate care settings, which in turn could result in overall improved care during serious illness.

To assess hopelessness, anxiety, depression, and quality of life in cancer patients undergoing palliative treatment by comparing their scores at the onset of treatment and one month later and by assessing possible correlations with coping strategies.

Participants included 85 patients of both genders (56.5% female) diagnosed with advanced cancer who did not have curative therapeutic options who were assessed with self-applied instruments (the Beck Hopelessness Scale, the European Organization for the Research and Treatment of Cancer Quality of Life Core Questionnaire–Cancer 30, the Hospital Anxiety and Depression Scale, and the Coping Strategies Inventory by Folkman and Lazarus) at two timepoints: first before their appointment with doctors and other professionals in their first visit to the palliative care outpatient clinic (PCOC) and then as soon as patients arrived at the PCOC for their first medical follow-up visit (approximately 30 days after the first appointment).

The scores for hopelessness, anxiety, and depression remained stable (p = 0.24). The results were the same for the quality-of-life (QoL) variables, except for the fatigue and pain scores, which decreased (p = 0.01), and social impairment, which increased (p = 0.03). Analysis of the correlations between the coping mechanisms used after the onset of palliative treatment showed that confronting coping, seeking social support, and positive reappraisal were inversely correlated with hopelessness. Seeking social support, planful problem solving, and positive reappraisal were inversely correlated with indicators of depression. In contrast, use of the escape–avoidance strategy and reduced use of the planful problem-solving strategy were associated with increased anxiety.

The employment of problem-focused coping strategies exerted a positive impact on the end-of-life process and, above all, protected patients from the negative experiences associated with psychiatric symptoms, thus enabling them to look for alternative solutions for experiencing the end-of-life process in a more well-adjusted manner.

Studies on decisional capacity have primarily focused on cognitive disorders, whereas noncognitive disorders remain understudied. The purpose of our study was to assess decisional capacity across a wide spectrum of medical and psychiatric disorders.

More than 2,500 consecutive consults were screened for decisional capacity, and 336 consults were reviewed at Bellevue Hospital Center in New York. Sociodemographic and medical variables, medical and psychiatric diagnoses, as well as decisional capacity assessments were recorded and analyzed.

Consults for decisional capacity were most commonly called for in male patients with cognitive and substance abuse disorders. Less commonly, consults were called for patients with mood or psychotic disorders. Overall, about two thirds of patients (64.7%) were deemed not to have decisional capacity. Among medical diagnoses, neurological disorders contributed to decisional incapacity, and among the psychiatric diagnoses, cognitive disorders were most frequently documented in cases lacking decisional capacity (54.1%) and interfered more commonly with decisional capacity than substance abuse or psychotic disorders (37.2 and 25%). In contrast, patients with mood disorders usually retained their decisional capacity (32%). Generally, the primary treatment team's assessment was accurate and was confirmed by the psychiatric service.

Although decisional capacity assessments were most commonly requested for patients with substance abuse and cognitive disorders, the latter generally affected the ability to make healthcare decisions the most. Further, cognitive disorders were much more likely to impair the ability to make appropriate healthcare decisions than substance abuse or psychotic disorders.

Most cancer patients experience the time when a doctor must “break the bad news” to them, a time when it is necessary for patients to call upon their self-determination to aid in the battle with cancer. The purpose of our study was to clarify the percentage of times doctors deliver bad news to patients at the end of life in each of four different situations, and to define the most common recipients of this bad news. We compare these results for two timepoints: 2006 and 2012.

The study had a national cross-sectional design consisting of self-completed questionnaires sent to all hospitals that provide cancer care. We mailed them to hospital directors in January and February of 2012, requesting a reply. The results of the same survey in 2006 were employed as a point for comparison.

A total of 1224 questionnaires were returned during 2012. 1499 responses collected in 2006 were employed as reference data. Some hospital characteristics had changed over that interval; however, the new data obtained were representative for patients being treated in Japanese cancer care hospitals. In hospitals with 300–499, there were significant differences between 2006 and 2012 in the providing information about (“disclosure of cancer diagnosis,” “therapeutic options for treatment,” and “a life-prolonging treatment”). In addition, the likelihood of doctors delivering bad news to patients and family members (as opposed to family members only) at the end of life increased from 2006 to 2012.

Our results suggest that the overall incidence of bad news being disclosed has increased, especially in hub medical institutions for cancer care. Advanced treatment options or domestic legislation may have influenced the frequency or type of bad news.

The multidimensional burden that results from providing care to a patient with cancer is well documented and a growing number of psychosocial interventions have been developed to address this burden. None, however, target existential distress, a critical, common element — and potentially driving mechanism — of caregiver burden. Meaning-Centered Psychotherapy (MCP) is a structured psychotherapeutic intervention originally developed by our group to target existential distress and spiritual well-being among patients with advanced cancer. We are currently developing Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C). The objective of this qualitative study is to describe the application of MCP to the unique experience of caregivers of patients with advanced cancer.

A case study of a participant from an initial MCP-C group is presented, with a focus on the application of sources of meaning to the cancer caregiving experience.

The exploration of critical sources of meaning in the participant's life generally, and related to caregiving specifically, highlighted significant areas of growth, including an increased understanding of the historical context shaping her experience of providing care, the recognition of the need for improved self-care and reconnecting with meaningful activities, and the possibility for continued connectedness to others and the world, despite the limitations resulting from her husband's terminal illness.

Existential distress is a critical and often overlooked element of burden among cancer caregivers. MCP-C is intended to target this component of burden and address this critical gap in the palliative care literature. Clinical trials are underway to evaluate the efficacy of MCP-C delivered over the Internet. Future studies are needed to evaluate the benefits of MCP-C for particularly burdened groups of caregivers, such as caregivers of patients with brain tumors and those undergoing hematopoietic stem cell transplantations, and to identify target points of delivery that will optimize the intervention's benefits.