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.

Individuals with life-threatening illness often engage in some form of spirituality to meet increased needs for meaning and purpose. This study aimed to identify the role of spirituality in persons who had reported positive, life-transforming change in relation to life-threatening cancer or cardiac events, and to connect these roles to palliative and supportive care.

A purposive sample of 10 cardiac survivors and 9 cancer survivors was recruited. Once the participants had given informed consent and passed screening in relation to life-transforming change and distress, they engaged in a semistructured one-hour qualitative interview on the theme of how their life-transforming change occurred in the context of their life-threatening illness. In the present article, our phenomenological analysis focuses on participants' references to purpose and meaning in their lives, with particular attention to the role and context of participants' spirituality.

Participants mentioned spirituality, meaning, and purpose in many contexts, including connecting with family and friends, nature, art, music, and sometimes creating a relationship with God. Participants often accessed spirituality by enhancing connections in their own lives: with a higher power, people, their work, or themselves. These enhanced connections gave participants greater meaning and purpose in their lives, and substantially helped participants to adjust to their life-threatening illnesses.

Understanding the roles and contexts of spirituality among patients with a life-threatening illness allows us to develop better palliative and supportive care plans. Spiritually oriented supportive care may include support groups, yoga, meditation, nature, music, prayer, or referral to spiritual or religious counselors. A quantitative scale is needed to help healthcare clinicians assess the spiritual and coping needs of individuals with life-threatening illness.

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.

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.

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.

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.

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.

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.

Following the loss of a loved one to cancer, a significant subset of bereaved family members are at heightened risk for mental and physical health problems; however, these family members often “fall through the cracks” of the healthcare system. A brief, clinically useful self-report bereavement risk-screening tool could facilitate more effective identification of family members in need of psychosocial support before and after a cancer loss. Thus, the purpose of this study was to develop and refine the Bereavement Risk Inventory and Screening Questionnaire (BRISQ), a self-report bereavement screening tool, and to assess its utility using feedback from bereavement experts.

Quantitative and qualitative feedback from a panel of 15 clinical and research experts in bereavement was obtained through an online survey to identify the most clinically useful items and understand expert opinion on bereavement screening.

The qualitative and quantitative feedback were synthesized, resulting in a 22% reduction of the item pool. While there was a general consensus between experts on the most clinically useful risk factors for bereavement-related mental health challenges and on the utility of screening, they also offered feedback on language and formatting that guided substantial revisions to the BRISQ.

These findings were utilized to refine the BRISQ in preparation for a second study to obtain family member feedback on the measure. By incorporating both expert and family member feedback, the intention is to create a screening tool that represents top clinical and research knowledge in bereavement in a way that effectively addresses barriers to care.

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.

Advance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.

We conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.

A search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.

Of 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.

Future research should focus on ways to involve people with dementia in decision-making through supported means.

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.

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.

With increasing research on the role of religion and spirituality in the well-being of cancer patients, it is important to define distinctly the concepts that researchers use in these studies.

Using the philosophies of Frege and James, this essay argues that the terms “religion” and “spirituality” denote the same concept, a concept that is identified with the Peace/Meaning subscale of the Functional Assessment of Chronic Illness Therapy — Spiritual Well-being Scale (FACIT-Sp).

The term “Religions” denotes the concept under which specific religious systems are categorized.

This article shows how muddling these concepts causes researchers to make claims that their findings do not support, and it ends in suggesting that future research must include universal measures of the concept of religion/spirituality in order to investigate further the role of interventions in the spiritual care of people living with cancer.

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.

The aims of this study of women with breast cancer were: to describe the levels of hope and compare hope scores for these patients with a sample from the general Norwegian population; to describe the relationship between hope and fatigue; and finally to evaluate the effect of demographic and clinical characteristics and fatigue on hope.

A total of 160 Norwegian outpatients with cancer and fatigue (>2.5 on a 0–10 scale) completed the Herth Hope Index (HHI), Fatigue Questionnaire (FQ), and Self-administered Comorbidity Questionnaire (SCQ).

The mean age of the women was 55.3 years (SD = 9.4), 81% lived with someone, and 67% were employed. The most common comorbidities were back pain (42%), osteoarthritis (26%), and headache (19%). The fatigued breast cancer patients reported significantly higher total hope scores than the general Norwegian population (p < .0001). The difference was largest in the individual item “I can see a light in the tunnel,” to which the cancer sample reported the highest scores, but they also felt more “scared about the future.” Total hope score was negatively correlated with total fatigue (TF), mental fatigue (MF), and chronic fatigue (CF), but not with physical fatigue (PF). Demographic and clinical characteristics were not significantly related to hope, except that patients who were married or living with someone showed significantly higher total hope scores.

The higher levels of hope in breast cancer patients compared with the general Norwegian population may reflect a response shift in patients after getting a cancer diagnosis. The fact that a significant relationship was found between total hope scores and living arrangements may indicate that hope is easier to establish when patients have someone to relate to or receive support from. Hope and total fatigue were significantly, but weakly correlated.

Many cancer centers struggle to implement standardized distress screening despite the American College of Surgeons’ Commission on Cancer 2012 mandate for a distress screening program standard of care by 2015. This paper presents outcomes for the first cohort of participants (n = 36) of a Screening for Psychosocial Distress Program (SPDP), a 2-year training program designed to assist clinicians in implementing routine distress screening as mandated by the American College of Surgeons Commission on Cancer. Specifically, participants’ success with distress screening implementation, institutional barriers and facilitators to implementation, and the role of the SPDP are described.

This research followed a longitudinal pre- and posttest mixed methods design. An investigator-developed questionnaire collected qualitative (distress screening goals, institutional barriers and facilitators, facilitators associated with participation in the SPDP) and quantitative (level of goal achievement) data at 6, 12, and 24 months of participation in the SPDP. Conventional content analysis was applied to qualitative data. Mixed methods data analysis in Dedoose evaluated (1) types and number of distress screening goals, barriers, and facilitators, and (2) goal achievement at 6, 12, and 24 months of participation.

Ninety-five percent of distress screening implementation goals were completed after 2 years of participation. Most common institutional barriers to distress screening implementation were “lack of staff,” “competing demands,” and “staff turn-over.” Most common institutional facilitators were “buy-in,” “institutional support,” and “recognition of participants’ expertise.” The number of reported facilitators associated with SPDP participation was higher than the number associated with any institutional factor, and increased over time of participation.

Participating in training programs to implement distress screening may facilitate successful achievement of the Commission on Cancer's distress screening standard, and benefits seem to increase with time of participation. Training programs are needed to promote facilitators and overcome barriers to distress screening.