Health care professionals (HCPs) caring for people with primary malignant glioma (PMG) and their carers see many of the profound challenges facing this group, yet their perspectives are not documented. This study aimed to understand and document the unique perspective of HCPs in relation to the supportive and palliative care needs of patients with PMG and their carers, with a view to developing a model of care.

Qualitative study involving semi-structured focus groups and interviews with 35 medical, nursing and allied health staff actively engaged in providing care for this patient group. Purposive and theoretical sampling from two major metropolitan hospitals and one community palliative care service in Australia was utilised to seek perspectives from a variety of disciplines and health care settings. Thematic analysis was conducted by three independent researchers, using a constant comparative method influenced by grounded theory.

Key themes relating to the needs of people with PMG which were apparent from the HCPs included: The difference in the illness course of glioma compared to other cancers; Limitations of current medical care; Challenges in balancing hope with reality of the illness; and Recommendations to improve care, including recognising the role of family and moving from a model where services are offered in response to demonstrated needs.

Current models of care based upon the classic cancer trajectory are unresponsive to the needs of people with PMG. Care may be enhanced by moving towards a proactive approach, extending the goals of care beyond medical needs and broadening the focus of care to include family needs.

Due to an urgent need for specialized palliative care (SPC) for patients with advanced cancer, an overview of available information on organization and outcomes of home-based SPC would be valuable. Our systematic review aims to give an overview of available information on the organization and outcomes of home-based SPC for patients with advanced cancer. Outcomes related to place of death, survival time, quality of life, performance status, and symptom management are included.

A PICO process search strategy consisting of terms related to cancer, palliation, and home care was employed. The search was conducted in PubMed, EMBASE, and Cochrane from January 1, 2000, to January 27, 2015. A hand search of the reference lists of the included studies was also performed.

A total of 5 articles (out of 2080 abstracts) were selected for analysis. Three additional studies were added by the hand search. Six observational and two interventional studies were evaluated. In all of these studies, the description of the SPC service was limited to the composition of the staff—no other organizational aspects were detailed. From 44 to 90% of the patients receiving home-based SPC died at home. Studies including survival and quality of life had divergent outcomes, and overall performance status did not improve. However, symptom control did improve over time.

There is a lack of controlled clinical trials and organizational descriptions regarding home-based SPC for patients with advanced cancer, resulting in poor information and a lack of evidence. Generally, home-based SPC seems to have some positive effect on pain and dyspnea, but more high-quality studies are required.

A systematic review was conducted in order to explore the effectiveness of communication-skills training interventions in end-of-life care with noncancer acute-based healthcare staff.

Articles were included if they (1) focused on communication-skills training in end-of-life/palliative care for noncancer acute-based staff and (2) reported an outcome related to behavior change with regard to communication. Sixteen online databases were searched, which resulted in 4,038 potential articles. Screening of titles left 393 articles that met the inclusion criteria. Abstracts (n = 346) and full-text articles (n = 47) were reviewed, leaving 10 papers that met the criteria for our review. All articles explored the effect of communication-skills training on aspects of staff behavior; one study measured the effect on self-efficacy, another explored the impact on knowledge and competence, and another measured comfort levels in discussing the end of life with patients/families. Seven studies measured a number of outcomes, including confidence, attitude, preparedness, stress, and communication skills.

Few studies have focused on end-of-life communication-skills training in noncancer acute-based services. Those that do have report positive effects on staff behavior with regard to communication about the end of life with patients and families. The studies varied in terms of the population studied and the health services involved, and they scored only moderately or weakly on quality. It is a challenge to draw a definite conclusion about the effectiveness of training interventions in end-of-life communication because of this. However, the findings from our review demonstrate the potential effectiveness of a range of training interventions with healthcare professionals on confidence, attitude, self-efficacy, and communication skills.

Further research is needed to fully explore the effectiveness of existing training interventions in this population, and evidence using objective measures is particularly needed. Ideally, randomized controlled trials or studies using control groups and longer follow-ups are needed to test the effectiveness of interventions.

The purpose of this study was to assess the impact of a palliative medicine consultation on medical intensive care unit (MICU) and hospital length of stay, Do Not Resuscitate (DNR) designation, and location of death for MICU patients who died during hospitalization.

A comparison of two retrospective cohorts in a 17-bed MICU in a tertiary care university-affiliated hospital was conducted. Patients admitted to the MICU between January 1, 2003 and June 30, 2004 (N = 515) were compared to MICU patients who had had a palliative medicine consultation between January 1, 2005 and June 1, 2009 (N = 693). To control for disease severity, only patients in both cohorts who died during their hospitalization were considered for this study.

Palliative medicine consultation reduced time until death during the entire hospitalization (log-rank test, p < 0.01). Time from MICU admission until death was also reduced (log-rank test, p < 0.01), further demonstrating the impact of the palliative care consultation on the duration of dying for hospitalized patients. The intervention group contained a significantly higher percentage of patients with a DNR designation at death than did the control group (86% vs. 68%, χ2 test, p < 0.0001).

Palliative medicine consultation is associated with an increased rate of DNR designation and reduced time until death. Patients in the intervention group were also more likely to die outside the MICU as compared to controls in the usual care group.

General practitioners (GPs) play an integral role in addressing the psychological needs of palliative care patients and their families. This qualitative study investigated psychosocial issues faced by GPs in the management of patients receiving palliative care and investigated the themes relevant to the psychosocial care of dying patients.

Fifteen general practitioners whose patient had been recently referred to the Mt. Olivet Palliative Home Care Services in Brisbane participated in an individual case review discussions guided by key questions within a semistructured format. These interviews focused on the psychosocial aspects of care and management of the referred patient, including aspects of the doctor/patient relationship, experience of delivering diagnosis and prognosis, addressing the psychological concerns of the patients' family, and the doctors' personal experiences, reactions, and responses. Qualitative analysis was conducted on the transcripts of these interviews.

The significant themes that emerged related to perceived barriers to exploration of emotional concerns, including spiritual issues, and the discussion of prognosis and dying, the perception of patients' responses/coping styles, and the GP's personal experience of the care (usually expressed in terms of identification with patient).

The findings indicate the significant challenges facing clinicians in discussions with patients and families about death, to exploring the patient's emotional responses to terminal illness and spiritual concerns for the patient and family. These qualitative date indicate important tasks in the training and clinical support for doctors providing palliative care.

Delirium is a clinical syndrome that is known to be under recognized by palliative care teams. A wide variation in reported prevalence may reflect differences in definitions and assessment methods, patient characteristics, and study design. The aim of this study was to test an intervention to improve recognition of delirium in the inpatient palliative care setting.

We conducted a retrospective palliative care notes review of documented prevalence of delirium among 61 patients referred to the Specialist Palliative Care Advisory Team (SPCT). Subsequently, training in the use of the Confusion Assessment Method (CAM) was provided to the SPCT and a prospective survey of the prevalence of delirium measured by the CAM was undertaken with the next 59 patients referred.

In the retrospective chart review, the term “delirium” was not used, and synonyms were identified and used to establish a delirium prevalence of 11.5%. In the intervention utilizing the CAM in a prospective sample of 59 referred patients, a prevalence rate of 8.5–15.2% for delirium was found. Use of the CAM was received favorably by the SPCT.

The institution of the use of the CAM as a screening and assessment tool in the inpatient palliative care setting did not significantly increase the recognition of delirium. Reasons for the low prevalence of delirium are discussed.

Several studies have successfully tested psychosocial interventions in palliative care patients. Counseling is the technique most often employed. Dignity therapy (DT) has recently emerged as a tool that can be utilized to address patients' needs at the end of life. The aims of our study were to examine the effects of DT and counseling and to offer useful information that could be put into practice to better meet patients' needs.

We developed a pilot randomized controlled trial at the Home Care Unit of the General University Hospital of Valencia (Spain). Some 70 patients were assigned to two therapy groups. The measurement instruments employed included the Patient Dignity Inventory (PDI), the Hospital Anxiety and Depression Scale (HADS), the Brief Resilient Coping Scale (BRCS), the GES Questionnaire, the Duke–UNC-11 Functional Social Support Questionnaire, and two items from the EORTC Quality of Life C30 Questionnaire (EORTC–QLQ–C30).

The results of repeated-measures t tests showed statistically significant differences with respect to the dimensions of dignity, anxiety, spirituality, and quality of life for both groups. However, depression increased in the DT group after the intervention, and there were no differences with respect to resilience. Therapy in the counseling group did not negatively affect depression, and resilience did improve. When post-intervention differences between groups were calculated, statistically significant differences in anxiety were found, with lower scores in the counseling group (t(68) = –2.341, p = 0.022, d = 0.560).

Our study provided evidence for the efficacy of dignity therapy and counseling in improving the well-being of palliative home care patients, and it found better results in the counseling therapy group with respect to depression, resilience, and anxiety.

The nursing profession demands knowledge, awareness, and experience regarding the ethnic, religious, cultural, and social constructs involved in patient care. Non-Muslim nurses must have theoretical and empirical insights into treatment methods and caring for terminally ill Muslim patients. In particular, non-Muslim nurses should acquire knowledge of Islamic rules and regulations. They should also be familiar with the unique religious and sociocultural practices that pertain to healthcare practices. Our study aimed to explore non-Muslim nurses' experiences in caring for terminally ill Muslim patients and their families regarding physical, social, cultural, spiritual, and religious practices. The study also sought to investigate the context or situations that influence these experiences as described by the nurses.

In this qualitative descriptive study, 10 nurses working in medical, oncology, and oncology/palliative care units in a tertiary care hospital in Saudi Arabia were interviewed. A modified Stevick–Colaizzi–Keen method was employed for data analysis.

Three main themes constituted the nurses' lived experiences: family matters, end-of-life practices, and nurse challenges. Cultural values, religious practices, and a family approach to the process of care influenced nurses' experiences. Issues related to an absence of palliative care integration and the unavailability of members in the interdisciplinary team also influenced their experiences. Nurses showed a lack of cultural knowledge of some practices due to a lack of awareness of cultural diversity and the unavailability of formal cultural education.

Provision of culturally competent care at the end of life for Muslim patients in Saudi Arabia requires a thoughtful understanding of religious and cultural practices as well as knowledge of the role of the family throughout the care process. The introduction of a cultural care nursing delivery model that incorporates a cultural education program with Islamic teachings and practices at its core is recommended.

Persons with ALS differ from those with other terminal illnesses in that they commonly retain capacity for decision making close to death. The role patients would opt to have their families play in decision making at the end of life may therefore be unique. This study compared the preferences of patients with ALS for involving family in health care decisions at the end of life with the actual involvement reported by the family after death.

A descriptive correlational design with 16 patient–family member dyads was used. Quantitative findings were enriched with in-depth interviews of a subset of five family members following the patient's death.

Eighty-seven percent of patients had issued an advance directive. Patients who would opt to make health care decisions independently (i.e., according to the patient's preferences alone) were most likely to have their families report that decisions were made in the style that the patient preferred. Those who preferred shared decision making with family or decision making that relied upon the family were more likely to have their families report that decisions were made in a style that was more independent than preferred. When interviewed in depth, some family members described shared decision making although they had reported on the survey that the patient made independent decisions.

The structure of advance directives may suggest to families that independent decision making is the ideal, causing them to avoid or underreport shared decision making. Fear of family recriminations may also cause family members to avoid or underreport shared decision making. Findings from this study might be used to guide clinicians in their discussions of treatments and health care decision making with persons with ALS and their families.

Burnout syndrome is a work-related professional distress. Palliative care physicians often have to deal with complex end-of-life situations and are at risk of presenting with burnout syndrome, which has been little studied in this population. Our study aims to identify the impact of clinical settings (in a palliative care unit (PCU) or on a palliative care mobile team (PCMT)) on palliative care physicians.

We undertook a cross-sectional study using a questionnaire that included the Maslach Burnout Inventory (MBI), and we gathered sociodemographic and professional data. The questionnaire was sent to all 590 physicians working in palliative care in France between July of 2012 and February of 2013.

The response rate was 61, 8% after three reminders. Some 27 (9%) participants showed high emotional exhaustion, 12 (4%) suffered from a high degree of depersonalization, and 71 (18%) had feelings of low personal accomplishment. Physicians working on a PCMT tended (p = 0.051) to be more likely to suffer from emotional exhaustion than their colleagues. Physicians working on a PCMT worked on smaller teams (fewer physicians, p < 0.001; fewer nonphysicians, p < 0.001). They spent less time doing research (p = 0.019), had fewer resources (p = 0.004), and their expertise seemed to be underrecognized by their colleagues (p = 0.023).

The prevalence of burnout in palliative care physicians was low and in fact lower than that reported in other populations (e.g., oncologists). Working on a palliative care mobile team can be a more risky situation, associated with a lack of medical and paramedical staff.

To provide an overview of the current state of research of advance care planning (ACP), highlighting most studied topics, publication time, quality of studies and reported outcomes, and to identify gaps to improve ACP receptivity, utilization, implementation, and outcomes.

Cochrane methodology for conducting overviews of systematic reviews. Study quality was assessed using a modified version of the Assessing the Methodological Quality of Systematic Reviews tool. The following databases were searched from inception to April 2017: MEDLINE, EBM Reviews, Cochrane Reviews, CINAHL, Global Health, PsycINFO, and EMBASE. Searches were supplemented with gray literature and manual searches.

Eighty systematic reviews, covering 1,662 single articles, show that ACP-related research focuses on nine main topics: (1) ACP as part of end-of-life or palliative care interventions, (2) care decision-making; (3) communication strategies; (4) factors influencing ACP implementation; (5) ACP for specific patient groups, (6) ACP effectiveness; (7) ACP experiences; (8) ACP cost; and (9) ACP outcome measures. The majority of this research was published since 2014, its quality ranges from moderate to low, and reports on documentation, concordance, preferences, and resource utilization outcomes.

Despite the surge of ACP research, there are major knowledge gaps about ACP initiation, timeliness, optimal content, and impact because of the low quality and fragmentation of the available evidence. Research has mostly focused on discrete aspects within ACP instead of using a holistic evaluative approach that takes into account its intricate working mechanisms, the effects of systems and contexts, and the impacts on multilevel stakeholders. Higher quality studies and innovative interventions are needed to develop effective ACP programs and address research gaps.

Tentative results from a pilot study showed that patients with advanced cancer were willing and able to take part in a group exercise intervention. Limited knowledge exists, though, about the meaning and significance of such programs. The purpose of the present study was to understand the meaning of such an intervention for the individual participant and thereby to provide knowledge for shaping future clinical practice.

Thirty-four palliative cancer patients with a life expectancy of less than 1 year completed a 6-week group exercise program. Five randomly selected individuals were interviewed 7 months after completion. Results from a self-report evaluation questionnaire identified relevant themes that formed the basis of an interview guide. These were addressed in a semistructured interview. Verbatim transcripts were analyzed with a phenomenological–hermeneutical approach.

Two main themes emerged from the interviews: (1) perceptions of the group and (2) a secure and caring setting for the group. Themes identified regarding perception of the group were a sense of belonging and commitment. Themes identified regarding a secure and caring setting for the group were a life-empowering group as a setting for enhancing coping, the qualifications of those who led the group, and a public gym as an unsuitable setting.

Our study indicates that an individually adjusted group exercise program, with competent leaders, can provide a setting to enhance psychological well-being in cancer patients with life expectancy below 1 year. Small sample size, however, limits the possibility to generalize the findings.

The loss of a parent to cancer is considered one of the most traumatic events a teenager can experience. Studies have shown that teenagers, from the time of diagnosis, are already extremely worried about the consequences of a parent's cancer but tend to be left to manage these concerns on their own. The present study aimed to explore young adults' advice to healthcare professionals on how to support teenagers who are losing a parent to cancer.

This work derives from a Swedish nationwide survey and employs a qualitative approach with a descriptive/interpretive design to obtain answers to an open-ended question concerning advice to healthcare professionals. Of the 851 eligible young adults who had lost a parent to cancer when they were 13–16 years of age within the previous 6 to 9 years, 622 participated in our survey (response rate = 73%). Of these 622 young adults, 481 responded to the open-ended question about what advice to give healthcare professionals.

Four themes emerged: (1) to be seen and acknowledged; (2) to understand and prepare for illness, treatment, and the impending death; (3) to spend time with the ill parent, and (4) to receive support tailored to the individual teenager's needs.

This nationwide study contributes hands-on suggestions to healthcare staff regarding attitudes, communication, and support from the perspective of young adults who, in their teenage years, lost a parent to cancer. Teenagers may feel better supported during a parent's illness if healthcare professionals take this manageable advice forward into practice and see each teenager as individuals; explain the disease, its treatments, and consequences; encourage teenagers to spend time with their ill parent; and recommend sources of support.

Although delirium is a common psychiatric complication in cancer patients, it is often not accurately recognized. To date, the characteristics and outcome of misrecognized patients are unclear in the cancer setting. This retrospective study was planned to determine the recognition by oncologists at the psychiatric consultation, characteristics, reversibility and outcome of misrecognized patients with delirium.

We reviewed charts of 60 patients diagnosed with delirium by the psycho-oncologists who were referred to the psychiatric consultation by the oncologists. Information about demographics, initial assessment by the oncologists, delirium subtype, precipitating factors, intervention for delirium, reversibility, and final status was obtained.

Twenty-two among 60 delirious patients were misrecognized by the oncologists at the time of consultation. They were often diagnosed as having anxiety or other psychiatric disorders. Misrecognized participants were significantly younger than accurately recognized cases of delirium. The psychiatrists made suggestions to the oncologists for all the referred patients, even when they were accurately diagnosed with delirium before consultation. For the correctly recognized patients, the main suggestion was pharmacological reevaluation. For the misdiagnosed cases, the psychiatrists suggested a reconsideration of the strategy for cancer treatment and the provision of information to the patient's family members about their condition.

Despite its high prevalence, delirium is difficult to diagnose for non-psychiatric physicians. Its detection is important not only to give the best treatment option to cancer patients but also to provide the best opportunity to inform their family about their condition and end-of-life issues.

The decision to receive palliative care at home brings with it the complexity of managing a medication regime. Effective symptom control is often directly linked to medication management and relies on access to medications at all times. In home-based palliative care practice, polypropylene syringes of medications may be drawn up and left in clients' domestic refrigerators for subcutaneous administration by carers to provide immediate relief for symptoms such as pain and nausea. However, although there has been some discussion in the literature about the need for ready access to medications for symptom control of clients receiving care in the community, the feasibility of this practice has received scant attention. The aim of this article is to present the carers' experiences of administering medications in this manner.

Semistructured interviews with 14 carers, who were administering medication in a home-based palliative care setting, were analyzed using qualitative methods to develop meaning units and themes.

Interviews revealed that this practice was highly valued. The carers willingly assumed the responsibility of medication administration, as it allowed the clients to remain at home where they desired to be. They could provide immediate symptom relief, which was of utmost importance to both the client and carer. The carers were empowered in their caring role, being able to participate in the care provided, rather than standing on the sidelines as helpless observers. Carers acknowledged the security and ethical issues associated with the presence of certain medications in the home and valued the 24-h telephone support that was available to them. After clients had died, the carers reflected on their involvement in care and felt a sense of pride and achievement from administering medications in this way because they had been able to care for their loved ones at home and fulfill their wish to die there.

These interviews confirm the feasibility of this practice, which is a component of quality end-of-life care.

The traditional relationship between patient and physician in East Asian society has often been described as “paternalistic.” However, in an increasingly Westernized world, our knowledge of how patients perceive the role of the physician in their decision making regarding treatment is lacking.

This article is part of a larger pilot study exploring the patient–physician dynamic on decision making among Southeast Asian palliative cancer patients. We explore: (1) influence of physicians, (2) the effect of symptom control and quality of life, and (3) dynamics and communication of physicians.

An interviewer-administered questionnaire was distributed, with 18 questions related to physician–patient interactions asked. Most questions followed a three point scale: “agree,” “neutral,” and “disagree,” and spontaneous answers beyond this framework were recorded.

Thirty patients from the palliative care service were interviewed, including inpatients at Singapore General Hospital and those attending outpatient clinics at the National Cancer Centre.

Patients said that they themselves and their physicians were the main influences (80% each), over family members (48.3%). Some patients (26.7%) felt that symptoms were not well controlled, and 42.9% identified low mood or anxiety. Some patients (44.8%) felt that their condition had an effect on decision making. Most patients (89.3%) had a good relationship with the staff, with >80% being comfortable with discussions held. However, 20.7% of patients felt dissatisfied with the information provided, and 62.1% of patients wanted full disclosure of information.

Patients appeared to place highest regard in both autonomy and physician input in making decisions, accompanied by an increased desire for more information. These reflect deviation away from traditional thinking of paternalistic doctoring in East Asia.

Studies have shown that when religious and spiritual concerns are addressed by the medical team, patients are more satisfied with their care and have lower healthcare costs. However, little is known about how intensive care unit (ICU) clinicians address these concerns. The objective of this study was to determine how ICU clinicians address the religious and spiritual needs of patients and families.

We performed a cross-sectional survey study of ICU physicians, nurses, and advance practice providers (APPs) to understand their attitudes and beliefs about addressing the religious and spiritual needs of ICU patients and families. Each question was designed on a 4- to 5-point Likert scale. A total of 219 surveys were collected over a 4-month period.

A majority of clinicians agreed that it is their responsibility to address the religious/spiritual needs of patients. A total of 79% of attendings, 74% of fellows, 89% of nurses, and 83% of APPs agreed with this statement. ICU clinicians also feel comfortable talking to patients about their religious/spiritual concerns. In practice, few clinicians frequently address religious/spiritual concerns. Only 14% of attendings, 3% of fellows, 26% of nurses, and 17% of APPs say they frequently ask patients about their religious/spiritual needs.

This study shows that ICU clinicians see it as their role to address the religious and spiritual needs of their patients, and report feeling comfortable talking about these issues. Despite this, a minority of clinicians regularly address religious and spiritual needs in clinical practice. This highlights a potential deficit in comprehensive critical care as outlined by many national guidelines.

To improve the support to bereaved spouses during the year after the patient's death, a project was started consisting of three visits by a nurse (after 1, 3, and 13 months) with conversations about the patient's death and the spouse's life situation. The aim of this study was to describe the bereaved spouse's situation and adaptation during the first year after the loss.

Spouses of patients cared for by The Advanced Home Care Team (APHCT) in Uppsala, Sweden, were invited to participate in the project. Each participant was encouraged to talk freely about his or her situation, but enough direction was given to ensure that all items listed on a standardized questionnaire were covered.

Fifty-one spouses met the inclusion criteria and were invited to participate and 45 accepted. The subjects felt quite healthy but were tired and suffered from sleep disturbance. The grief reactions had initially been high but showed a significant decline from 1 to 13 months (p < .01). Forty-nine percent had experienced postbereavement hallucinations.

This study showed that the bereaved spouses felt quite healthy and adjusted quite well to their new life situation, after the patient's death in a palliative care setting. The grief reactions had initially been high but showed a significant decline during the year.