Considering two advanced illnesses, cancer and end-stage dementia, the aim of this study was to describe the symptoms of caregiver psychological distress and burden.

In this cross-sectional study, regression analyses were calculated to explain the influence of psychological distress in caregiver burden. A t test was employed to compare differences between the symptoms of caregiver burden.

The percentage of psychological distress was similar between caregivers of cancer patients (77.6%) and caregivers of dementia patients (72.4%). In the regression analysis, cancer caregiver distress accounted for 27.9% of the variance in symptoms of burden, while dementia caregiver distress accounted for 24.4% of the variance in symptoms of burden. No significant differences were revealed when comparing caregiver burden symptoms between caregivers of the two advanced illnesses (t = 0.06; p = 0.94).

In end-of-life care for patients with dementia, due to significant levels of caregiver distress and burden symptoms, there is a need to support caregivers in the same way as is done for caregivers of cancer patients.

Adolescence is characterized by increasing liberation from parents as the young person evolves into an independent individual. Experiencing the serious illness and death of a parent during this phase implies great stress. Serious illness involves uncertainty, worry, and hope at the same time that it is necessary for everyday life to function. This study sought to describe adolescents' experiences in the serious illness and death of a parent.

The study was carried out using a qualitative method. Data were collected in interviews with five adolescents who were 14–17 years of age when one of their parents died.

The results show that the parent's illness was a strong threat, as the adolescents understood that their own and the family's lives would be greatly changed by the illness/death. The incomprehensibility of the parent's serious illness and death was a threatening condition on its own. The adolescents strived to make the inconceivable more conceivable to understand what was happening. They also described the necessity of finding different ways of relating to and managing the threat, such as restoring order, seeking closeness, adapting, gaining control, avoiding talking about the illness, not accepting and counting the parent out. The adolescents described feelings of being alone and alienated, even though they were close to family and friends and they did not actively seek support. The lives of the adolescents were changed by their experiences, beyond their bereavement over the parent. They felt that they had become more mature than their friends and that there had been a change in their thinking about life, changes in values, and changes in their views of relationships with other people.

The results of the present study can form a basis for developing a support program whose purpose would be to prevent effects on health.

In a simultaneous care model, patients have concurrent access to both cancer-directed therapies and palliative care. As oncologists play a critical role in determining the need/timing of referral to palliative care programs, their understanding of the service and ability to communicate this with patients is of paramount importance. Our study aimed to examine oncologists' perceptions of the supportive care program at M.D. Anderson Cancer Center, and to determine whether renaming “palliative care” to “supportive care” influenced communication regarding referrals.

This qualitative study used semi-directed interviews, and we analyzed data using grounded theory and qualitative methods.

We interviewed 17 oncologists. Supportive care was perceived as an important time-saving application, and symptom control, transitioning to end-of-life care, family counseling, and improving patients' ability to tolerate cancer therapies were cited as important functions. Although most claimed that early referrals to the service are preferable, oncologists identified several challenges, related to the timing and communication with patients regarding the referral, as well as with the supportive care team after the referral was made. Whereas oncologists stated that the name change had no impact on their referral patterns, the majority supported it, as they perceived their patients preferred it.

Although the majority of oncologists favorably viewed supportive care, communication barriers were identified, which need further confirmation. Simultaneous care models that effectively incorporate palliative care with cancer treatments need further development.

The purposes of this study were to develop a communication skills training (CST) workshop program based on patient preferences, and to evaluate preliminary feasibility of the CST program on the objective performances of physicians and the subjective ratings of their confidence about the communication with patients at the pre- and post-CST.

The CST program was developed, based on the previous surveys on patient preferences (setting up the supporting environment of the interview, making consideration for how to deliver bad news, discussing about additional information, and provision of reassurance and emotional support) and addressing the patient's emotion with empathic responses, and stressing the oncologists' emotional support. The program was participants' centered approach, consisted a didactic lecture, role plays with simulated patients, discussions and an ice-breaking; a total of 2-days. To evaluate feasibility of the newly developed CST program, oncologists who participated it were assessed their communication performances (behaviors and utterances) during simulated consultation at the pre- and post-CST. Participants also rated their confidence communicating with patients at the pre-, post-, and 3-months after CST, burnout at pre and 3 months after CST, and the helpfulness of the program at post-CST.

Sixteen oncologists attended a newly developed CST. A comparison of pre-post measures showed improvement of oncologists' communication performances, especially skills of emotional support and consideration for how to deliver information. Their confidence in communicating bad news was rated higher score at post-CST than at pre-CST and was persisted at 3-months after the CST. Emotional exhaustion scores decreased at 3-months after CST. In addition, oncologists rated high satisfaction with all components of the program.

This pilot study suggests that the newly developed CST program based on patient preferences seemed feasible and potentially effective on improving oncologists' communication behaviors what patients prefer and confidence in communicating with patients.

Self-reported health-related quality of life (HRQoL) is an important predictor of survival alongside clinical variables and physicians' prediction. This study assessed whether better prediction is achieved using generic (SF-36) HRQoL measures or cancer-specific (EORTC QLQ-C30) measures that include symptoms.

Fifty-four lung and 46 colorectal patients comprised the sample. Ninety-four died before study conclusion. EORTC QLQ-C30 and SF-36 scores and demographic and clinical information were collected at baseline. Follow-up was 5 years. Deaths were flagged by the Office of National Statistics. Cox regression survival analyses were conducted. Surviving cases were censored in the analysis.

Univariate analyses showed that survival was significantly associated with better EORTC QLQ-C30 physical functioning, role functioning, and global health and less dyspnea and appetite loss. For the SF-36, survival was significantly associated with better emotional role functioning, general health, energy/vitality, and social functioning. The SF-36 summary score for mental health was significantly related to better survival, whereas the SF-36 summary score for physical health was not. In the multivariate analysis, only the SF-36 mental health summary score remained an independent, significant predictor, mainly due to considerable intercorrelations between HRQoL scales. However, models combining the SF-36 mental health summary score with diagnosis explained a similar amount of variance (12%–13%) as models combining diagnosis with single scale SF-36 Energy/Vitality or EORTC QLQ-C30 Appetite Loss.

HRQoL contributes significantly to prediction of survival. Generic measures are at least as useful as disease-specific measures including symptoms. Intercorrelations between HRQoL variables and between HRQoL and clinical variables makes it difficult to identify prime predictors. We need to identify variables that are as independent of each other as possible to maximize predictive power and produce more consistent results.

The aim of this study was to explore the symptom experience of patients with cancer, identify changes in symptoms over time, and explore the congruence of symptom reports between patients and their informal caregivers.

This was a prospective longitudinal evaluation of symptoms over 1 year from start of treatments (T1) using the Memorial Symptom Assessment Scale. Assessments and follow up took place at 3 months (T2), 6 months (T3) and 12 months (T4). A heterogeneous sample of 100 patients with cancer participated, providing 325 assessments over time. Furthermore, 82 caregivers also participated, providing 238 dyadic patient–caregiver assessments over the same time.

The most commonly occurring, and by far most distressing, symptom was “lack of energy.” Common symptoms reported were lack of concentration, difficulties sleeping, shortness of breath, cough, pain, dry mouth, and feeling drowsy. Symptom occurrence and distress improved over time, particularly from T2 to T3 (p < 0.05), but the “chronicity” of some generic symptoms was notable. Caregivers tended to overestimate occurrence and distress compared to patients, particularly in symptoms of psychological nature; κ statistics had a highest coefficient of 0.45, suggesting moderate agreement between patients and caregivers at best.

More attention needs to be paid to the commonly reported symptoms by patients, as they have the potential of impacting on quality of life (QOL). As patient–caregiver reports had moderate agreement, effort should be directed to improving this agreement, as caregivers are often communicating patient symptoms to clinicians.

Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation.

We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care. In keeping with the realist approach, we examined all relevant literature to develop theories that could explain how music therapy works.

A total of 51 articles were included in the review. Music therapy was found to have a therapeutic effect on the physical, psychological, emotional, and spiritual suffering of palliative care patients. We also identified program mechanisms that help explain music therapy's therapeutic effects, along with facilitating contexts for implementation.

Music therapy may be an effective nonpharmacological approach to managing distressing symptoms in palliative care patients. The findings also suggest that group music therapy may be a cost-efficient and effective way to support staff caring for palliative care patients. We encourage others to continue developing the evidence base in order to expand our understanding of how music therapy works, with the aim of informing and improving the provision of music therapy for palliative care patients.

People with severe persistent mental illness (SPMI) experience a greater burden and severity of chronic disease, late diagnosis, and premature death compared with the general population. Those with SPMI also receive fewer medical treatments, poor quality of care, and are less likely to receive palliative care. A systematic scoping review was undertaken to determine the extent, range, and nature of research activity about people with SPMI requiring palliative care, and to identify gaps and opportunities for future research.

A systematic scoping review was undertaken in September 2017 and updated in May 2018 to map literature on this topic, determine the extent and range of what has been published, and report the findings. This five-stage framework was conducted by (1) identifying the research question; (2) identifying relevant studies; (3) determining study selection; (4) charting the data; and 5) collating, summarizing, and reporting the results. A narrative approach to analysis was used to synthesize and interpret findings. A search of multidisciplinary healthcare databases resulted in 46 included articles.

Four major themes were identified from the included studies: complexity of care; limited access to care (both through systems and healthcare providers); competence and autonomy; and the potential for relationships between mental health and palliative care.

This review reveals a highly vulnerable population with complex needs that are not reliably being met by the healthcare system and providers. Research in this area must continue to develop using rigorous qualitative and quantitative study designs, and interventions should be developed and tested based on existing knowledge to inform care. The voices of people with SPMI in need of palliative care must be represented in future studies to address gaps. To expand a body of literature addressing mainly individuals, system perspectives and sociocultural analysis can bring much to contextualizing the experience of living with SPMI in the palliative phase of care. Adoption of a palliative approach, which promotes the principles of palliative care across nonspecialized care settings provided by nonspecialist palliative providers, has the potential to increase access to high-quality palliative treatment for people with SPMI.

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.

Health care professionals report a lack of skills in the psychosocial and spiritual aspects of caring for dying people and high levels of moral distress, grief, and burnout. To address these concerns, the “Being with Dying: Professional Training Program in Contemplative End-of-Life Care” (BWD) was created. The premise of BWD, which is based on the development of mindfulness and receptive attention through contemplative practice, is that cultivating stability of mind and emotions enables clinicians to respond to others and themselves with compassion. This article describes the impact of BWD on the participants.

Ninety-five BWD participants completed an anonymous online survey; 40 completed a confidential open-ended telephone interview.

Four main themes—the power of presence, cultivating balanced compassion, recognizing grief, and the importance of self-care—emerged in the interviews and were supported in the survey data. The interviewees considered BWD's contemplative and reflective practices meaningful, useful, and valuable and reported that BWD provided skills, attitudes, behaviors, and tools to change how they worked with the dying and bereaved.

The quality of presence has the potential to transform the care of dying people and the caregivers themselves. Cultivating this quality within themselves and others allows clinicians to explore alternatives to exclusively intellectual, procedural, and task-oriented approaches when caring for dying people. BWD provides a rare opportunity to engage in practices and methods that cultivate the stability of mind and emotions that may facilitate compassionate care of dying patients, families, and caregivers.

The purpose of this case series was to describe patients with aberrant drug-related behaviors and similar patterns of dose escalation in whom interdisciplinary assessment revealed different bases for their dose increases.

During the period from December 26 to December 30, 2011, the medical records of two patients with opioid-related aberrant behaviors were reviewed.

We described two patients with a significant cancer history and different comorbidities who presented with different aberrant drug-related behaviors and opioid requirements.

Opioid-related aberrant behaviors can be interpreted in different ways, and two of the more common syndromes in cancer patients are chemical coping and pseudoaddiction. In advanced cancer patients, the boundaries between these conditions are not as clear, and diagnosis is often made retrospectively. Furthermore, there have been relatively limited studies describing these two syndromes. Thus, they continue to pose a diagnostic and treatment challenge that requires different approaches for effective management of symptoms. The key characteristic between the two syndromes is that the behaviors displayed in chemical coping are motivated by obtaining opioids to relieve psychosocial distress, while in pseudoaddiction these behaviors are motivated by uncontrolled nociceptive input. Close monitoring of the pain syndromes, aberrant behaviors, and opioid requirements over several visits is usually necessary to distinguish the two syndromes.

Hope, despair, and hopelessness are dynamic in nature; however, they have not been explored over time. The objective of the present study was to describe hope, hopelessness, and despair over time, as experienced by palliative care patients.

We employed a qualitative longitudinal method based on narrative theories. Semistructured interviews with palliative care patients were prospectively conducted, recorded, and transcribed. Data on hope, hopelessness and despair were thematically analyzed, which led to similarities and differences between these concepts. The concepts were then analyzed over time in each case. During all stages, the researchers took a reflexive stance, wrote memos, and did member checking with participants.

A total of 29 palliative care patients (mean age, 65.9 years; standard deviation, 14.7; 14 females) were included, 11 of whom suffered from incurable cancer, 10 from severe chronic obstructive pulmonary disease, and 8 from severe heart failure. They were interviewed a maximum of three times. Participants associated hope with gains in the past or future, such as physical improvement or spending time with significant others. They associated hopelessness with past losses, like loss of health, income, or significant others, and despair with future losses, which included the possibility of losing the future itself. Over time, the nature of their hope, hopelessness, and despair changed when their condition changed. These dynamics could be understood as voices in a singing choir that can sing together, alternate with each other, or sing their own melody.

Our findings offer insight into hope, hopelessness, and despair over time, and the metaphor of a choir helps to understand the coexistence of these concepts. The findings also help healthcare professionals to address hope, hopelessness, and despair during encounters with patients, which is particularly important when the patients' physical condition has changed.

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

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

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

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

The relationship between the patient and physician is at the heart of good medical care, and trust is an essential component of this relationship. To enable the oncologist to better form a trusting relationship with the patient, this article describes four factors that influence patient trust.

Thematic literature review and a clinical vignette.

The authors discuss four factors that influence patient trust. These factors are whether and how the oncologist (1) minimizes the potential for shame and humiliation during the medical encounter, (2) manages the power imbalance between doctor and patient without abuse or misuse, (3) demonstrates to the patient an appreciation of how he or she is suffering from experience of cancer, and (4) demonstrates to the patient how he or she is suffering from the treatment provided by the oncologist. The authors illustrate these factors with a clinical vignette.

The cancer patient is best cared for by an oncologist who can not only understand disease and treat medical problems, but also accompany the patient through the illness experience. This requires an appreciation of the challenges to trust that are inherent in the special characteristics of the patient–physician interaction.

The purpose was to describe the physical, psychological, social, and spiritual needs of patients with non-cancer serious illness diagnoses compared to those of patients with cancer.

We conducted a retrospective chart review of all patients with a non-cancer diagnosis admitted to a tertiary palliative care unit between January 2008 and December 2017 and compared their needs to those of a matched cohort of patients with cancer diagnoses. The prevalence of needs within the following four main concerns was recorded and the data analyzed using descriptive statistics and content analysis:

• • Physical: pain, dyspnea, fatigue, anorexia, edema, and delirium

• • Psychological: depression, anxiety, prognosis, and dignity

• • Social: caregiver burden, isolation, and financial

• • Spiritual: spiritual distress

The prevalence of the four main concerns was similar among patients with non-cancer and cancer diagnoses. Pain, nausea/vomiting, fatigue, and anorexia were more prevalent among patients with cancer. Dyspnea was more commonly the primary concern in patients with non-cancer diagnoses (39%), who also had a higher prevalence of anxiety and concerns about dignity. Spirituality was addressed more often in patients with cancer.

The majority of patients admitted to tertiary palliative care settings have historically been those with cancer. The tertiary palliative care needs of patients with non-cancer diagnoses have not been well described, despite the increasing prevalence of this population. Our description of the palliative care needs of patients with non-cancer diagnoses will help guide future palliative care for the increasing population of patients with non-cancer serious illness diagnoses.

Occupational and physical therapists can have a significant impact on the quality of life of terminally ill cancer patients. In the critical care setting, rehabilitation is often overlooked. However, occupational and physical therapists work with critically-ill patients to create realistic and meaningful goals for improving comfort, mobility, socialization skills, and ability to care for oneself regardless of disease state and medical status. The following case report describes rehabilitation intervention with a young woman diagnosed with osteosarcoma and leukemia during the final stage of her life.

This case report highlights the use of patient-centered goals and the importance of close collaboration between the patient, occupational therapist, and physical therapists to achieve a higher quality of life.

A collaborative effort by the occupational and physical therapists yielded positive outcomes as defined by the patient, patient family, and the medical staff in the critical care setting.

Palliative care patients may benefit from occupational therapy (OT) and physical therapy (PT) intervention. Rehabilitation specialists are skilled at working with patients to set realistic and meaningful functional goals. Further study on rehabilitation treatment to improve quality of life among patients in palliative care is needed.