Palliative sedation is a method of symptom management frequently used in hospices to treat uncontrolled symptoms at the end of life. There is a substantial body of literature on this subject; however, there has been little research into the experiences of hospice nurses when administering palliative sedation in an attempt to manage the terminal restlessness experienced by cancer patients.

Semistructured interviews were conducted with a purposive sample of seven hospice nurses who had cared for at least one patient who had undergone palliative sedation within the past year in a hospice in the south of England in the United Kingdom. A phenomenological approach and Colaizzi's stages of analysis were employed to develop themes from the data.

Facilitating a “peaceful death” was the primary goal of the nurses, where through the administration of palliative sedation they sought to enable and support patients to be “comfortable,” “relaxed,” and “calm” at the terminal stage of their illness. Ethical dilemmas related to decision making were a factor in achieving this. These were: medication decisions, “juggling the drugs,” “causing the death,” sedating young people, the family “requesting” sedation, and believing that hospice is a place where death is hastened.

Hospice nurses in the U.K. frequently encounter ethical and emotional dilemmas when administering palliative sedation. Making such decisions about using palliative sedation causes general discomfort for them. Undertaking this aspect of care requires confidence and competence on the part of nurses, and working within a supportive hospice team is of fundamental importance in supporting this practice.

When registered nurses care for patients at the end of life, they are often confronted with different issues related to suffering, dying, and death whether working in hospital or community care. Serious existential questions that challenge nurses’ identities as human beings can arise as a result of these situations. The aim of our study was to describe and gain a deeper understanding of nurses’ existential questions when caring for dying patients.

Focus-group interviews with registered nurses who shared similar experiences and backgrounds about experiences in end-of-life care were employed to gain a deeper understanding about this sensitive subject. Focus-group interviews were performed in hospice care, in community care, and in a palliative care unit in western Sweden. A qualitative hermeneutic approach was employed to interpret the data.

Nurses’ existential questions balanced between responsibility and guilt in relation to their patients, between fear and courage in relation to being professional caregivers and fellow human beings, and between hope and despair in relation to the other's and their own death.

Nurses in end-of-life care experience various emotions from patients related to things physical, spatial, and temporal. When nurses encounter these emotions as expressing a patient's suffering, they lead to challenges of balancing between different feelings in relation to patients, as both professional caregivers and fellow human beings. Nurses can experience growth both professionally and as human beings when caring for patients at the end of life.

No prior studies on hospice utilization have captured information about the amount of time between when one first learns of hospice as a potential option for care and when he/she actually enrolls. Little is in fact known about this decision-making process. The present study examines hospice enrollment by exploring relationships between hospice decision time and known barriers to care.

This was an exploratory cross-sectional study. Pearson's r was employed to identify bivariate relationships between barriers to care and decision time for hospice care. Independent-sample t tests and ANOVA were utilized to consider differences in decision time across key variables.

Some 90 hospice patients, or their primary decision maker, participated in the study from a not-for-profit hospice located in the southern United States. Decision time was correlated with referral source, use of disease-directed treatment, functional status (on the Palliative Performance Scale [PPS]), age, diagnosis, income, race, and spirituality—suggesting that decision time is a pertinent variable when examining hospice utilization. Differences in decision time were found across diagnosis, race, income, and referral source.

This study provides implications for policy and practice, particularly for clinicians faced with initial conversations about hospice care. Differences in decision time highlight ongoing needs related to overcoming healthcare disparities, the important role of including families in initial conversations, and the potential need for varied approaches to talking about hospice care based upon diagnosis. Results also highlight the need for policies supportive of concurrent care, where hospice can be accessed alongside curative care.

Young adults with cancer experience high levels of psychological distress. Group interventions for cancer patients have been effective in reducing levels of psychological distress but suffer from high levels of attrition and serve a limited geographic area. In a quality-improvement project, we converted an existing in-person support group to a telemedicine format in the hopes of improving attendance and reducing geographic disparities in access to care.

Eight young adults (18–40 years) with cancer were recruited from across Colorado. Participants received a tablet equipped with Wi-Fi and downloaded an HIPAA-compliant video-conferencing application. Participants attended six weekly supportive psychotherapy sessions.

Participants found the group to be beneficial: the technology worked, they enjoyed the group format, and they would recommend it to others. The novel treatment interface allowed for low attrition rates due to the flexibility of a patient's location during the intervention. It allowed for provision of services to a geographically diverse population of medically ill young adults, as participants lived an average of 148 miles from the cancer center (range = 25–406 miles).

Internet-based mental health care is an area of growing interest for providers, but few studies have evaluated its efficacy in patients with cancer, and even fewer in young adults with cancer. Incorporating technological advances into clinical practice will increase access to care, reduce geographic health disparities, and provide more consistent services.

Those who are seriously ill and facing death are often living with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care.

Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC).

A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes.

Two themes were constructed through thematic analysis: (1) security (“They are always available,” “I get the help I need quickly”); and (2) continuity of care (“They know me/us, our whole situation and they really care”). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions.

Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

To clarify and record their role in the care of patients, hospital chaplains are increasingly called on to document their work in the medical record. Chaplains' documentation, however, varies widely, even within single institutions. Little has been known, however, about the forms that documentation takes in different settings or about how clinicians interpret chaplain documentation. This study aims to examine how chaplains record their encounters in an intensive care unit (ICU).

We performed a retrospective chart review of the chaplain notes filed on patients in the adult ICUs at a major academic medical center over a six-month period. We used an iterative process of qualitative textual analysis to code and analyze chaplains' free-text entries for emergent themes.

Four primary themes emerged from chaplain documentation. First, chaplains frequently used “code language,” such as “compassionate presence,” to recapitulate interventions already documented elsewhere in a checklist of ministry interventions. Second, chaplains typically described what they observed rather than interpreting its clinical significance. Third, chaplains indicated passive follow-up plans, waiting for patients or family members to request further interaction. Fourth, chaplains sometimes provided insights into particular relationship dynamics.

As members of the patient care team, chaplains access the medical record to communicate clinically relevant information. The present study suggests that recent emphasis on evidence-based practice may be leading chaplains, at least in the medical center we studied, to use a reduced, mechanical language insufficient for illuminating patients' individual stories. We hope that our study will promote further consideration of how chaplain documentation can enhance patient care and convey the unique value that chaplains add to the clinical team.

There is a limited number of pragmatic studies to evaluate the criteria for referral to outpatient palliative care. The aim of our study was to compare the characteristics, symptoms, and survival of patients with advanced non-small-cell lung cancer (NSCLC) referred (RF) versus not referred (NRF) to a novel embedded same-day rapid-access supportive care clinic (RASCC) and to compare the subgroups among referred patients.

We reviewed the medical records of all patients who received treatment at the thoracic oncology clinic for advanced non-small-cell lung cancer between August 1, 2012, and June 30, 2013, who were referred to the RASCC and those who were not referred. An oncology-estimated prognosis of ≤6 months and/or severe symptom distress was employed as criteria for referral to the RASCC.

Of 410 eligible patients, 155 (37.8%) were referred to the RASCC. RF patients had significantly higher patient-reported scores for pain, fatigue, lack of appetite, and symptom distress, as well as worse performance status and shorter survival than NRF patients. Among the RF patients, those who were referred early (≤3 months) had significantly worse symptom distress and shorter overall survival than patients who were referred later on. The patients treated by thoracic oncologists who referred a smaller proportion of their patients to the RASCC had significantly worse anxiety, well-being, spiritual pain, and symptom distress than patients treated by those who referred a larger proportion of their patients to the RASCC.

We found that patients who were referred to the RASCC had higher reported symptom distress and worse survival ratings. Further studies are needed to evaluate the optimal criteria for timely integration of palliative care and oncology care.

The aims of the present study were (1) to describe the prevalence of psychosocial distress in palliative care patients living at home and the related factors, and (2) to test implementation of the Distress Thermometer (DT) within a home-based palliative care service.

Ours was a 15-month prospective study beginning in September of 2013 in western Germany with consecutive patients cared for by a home care palliative care service. The research was implemented during the first visit by the home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the Distress Thermometer (DT), a Problem List (PL), and a structured questionnaire for evaluation were applied and sociodemographic and medical data collected.

A total of 103 patients (response rate = 70%; mean age = 67; female = 54%; married = 67%; oncological condition = 91%; Karnofsky Performance Status [KPS] score 0–40 = 34%, 50–70 = 60%, >80 = 6%) were included. The incidence of distress (DT score ≥4) was 89.3% (mean = 6.3 ± 2.5). No statistical association was found between level of distress and sociodemographic or medical factors. The five most reported problems were “fatigue” (90%), “getting around” (84%), “eating” (63%), “bathing/dressing” (60%), and “sleep” (57%). The number of problems reported correlated with level of distress (ρ = 0.34). The DT was comprehensible, and 80% considered its completion as unremarkable, while 14% found it “relieving.”

A significant proportion of patients treated at home reported symptoms of distress. The most oft-mentioned problems were physical and emotional in nature. The findings of our study highlight the importance of creating new concepts and structures in order to address the psychosocial needs of patients in home care with palliative needs.

Antiretroviral therapy (ART) affords longevity to patients infected with the human immune deficiency virus (HIV). Since little is known about the health-related quality of life (HRQoL) of persons who have been on ART for at least five years, the present study investigated the HRQoL of these patients in Botswana.

Medical records, structured interviews, and the World Health Organization Quality of Life–BREF (WHOQoL–HIV–BREF) instrument were employed to obtain information from 456 respondents.

Univariate and multivariate regression analyses showed that respondents' highest scores were in the “physical” domain (mean = 15.8, SD = 3.5), while the lowest scores were in the “environment” domain (mean = 12.9, SD = 2.5). Thus, the physical domain had the greatest impact on patients' overall HRQoL. Self-education about HIV-related issues was significantly correlated with all domains of HRQoL scores: physical (ρ = –2.32, CI95% = –3.02, –1.61); psychological (ρ = –2.26, CI95% = –2.87, –1.65); independence (ρ = –1.81, CI95% = –2.54, –1.06); social relationships (ρ = –1.40, CI95% = –2.13, –0.67); environment (ρ = –1.58, CI95% = –2.13, –1.04); and spirituality (ρ = –1.70, CI95% = –82.27, –1.13).

HRQoL assessments can identify and address patients' needs, and it is important that guidelines be developed that will yield improved care to ART patients in Botswana.

International studies have shown that patients want their spiritual needs attended to at the end of life. The present authors developed a project to investigate people's understanding of spirituality and spiritual care practices in New Zealand (NZ) hospices.

A mixed-methods approach included 52 semistructured interviews and a survey of 642 patients, family members, and staff from 25 (78%) of NZ's hospices. We employed a generic qualitative design and analysis to capture the experiences and understandings of participants' spirituality and spiritual care, while a cross-sectional survey yielded population level information.

Our findings suggest that spirituality is broadly understood and considered important for all three of the populations studied. The patient and family populations had high spiritual needs that included a search for (1) meaning, (2) peace of mind, and (3) a degree of certainty in an uncertain world. The healthcare professionals in the hospices surveyed seldom explicitly met the needs of patients and families. Staff had spiritual needs, but organizational support was sometimes lacking in attending to these needs.

As a result of our study, which was the first nationwide study in NZ to examine spirituality in hospice care, Hospice New Zealand has developed a spirituality professional development program. Given that spirituality was found to be important to the majority of our participants, it is hoped that the adoption of such an approach will impact on spiritual care for patients and families in NZ hospices.

People with a life-limiting physical illness experience high rates of significant psychological and psychiatric morbidity. Nevertheless, psychiatrists often report feeling ill-equipped to respond to the psychiatric needs of this population. Our aim was to explore psychiatry trainees’ views and educational needs regarding the care of patients with a life-limiting physical illness.

Using semistructured interviews, participants’ opinions were sought on the role of psychiatrists in the care of patients with a life-limiting illness and their caregivers, the challenges faced within the role, and the educational needs involved in providing care for these patients. Interviews were audiotaped, fully transcribed, and then subjected to thematic analysis.

A total of 17 psychiatry trainees were recruited through two large psychiatry training networks in New South Wales, Australia. There were contrasting views on the role of psychiatry in life-limiting illness. Some reported that a humanistic, supportive approach including elements of psychotherapy was helpful, even in the absence of a recognizable mental disorder. Those who reported a more biological and clinical stance (with a reliance on pharmacotherapy) tended to have a nihilistic view of psychiatric intervention in this setting. Trainees generally felt ill-prepared to talk to dying patients and felt there was an educational “famine” in this area of psychiatry. They expressed a desire for more training and thought that increased mentorship and case-based learning, including input from palliative care clinicians, would be most helpful.

Participants generally feel unprepared to care for patients with a life-limiting physical illness and have contrasting views on the role of psychiatry in this setting. Targeted education is required for psychiatry trainees in order to equip them to care for these patients.

This scoping literature review, through finding and assessing researched bereavement service outcomes, sought to determine the state of bereavement services evaluation, to catalogue service types, and to identify which service or services, if any, demonstrate clear evidence of effectiveness.

Our methods included: (1) a literature search for published English-language research articles from 2005–2015; (2) critical appraisal of articles to identify findings; (3) compilation of findings; and (4) determination of the relevance of our findings.

Some 38 papers were found, and all were retained to identify the outcomes researched and research findings. Many different outcomes were studied in the 18 quantitative, 11 qualitative, and 9 mixed-methods investigations undertaken worldwide. Ten studies focused on level of grief, six on stress/distress level, six on grief knowledge, six on level of depression, and five on somatization or physical symptoms. Most commonly, a group of bereavement services was evaluated as a whole, followed by group therapy, individual counseling, written information, and other less common services. No group of services or individual service was determined to yield clear and convincing evidence of effectiveness. Regardless, all but one service were shown to have value—most often related to gaining grief information and/or emotional support. Until high-quality research studies have repeatedly revealed evidence of effectiveness, it is possible that the positive outcomes of bereavement services will be largely based on bereaved people receiving helpful educational information and emotional support from organizations and people prepared to help them.

This project outlines existing bereavement service types and the state of science in relation to determination of outcomes. It offers suggestions to advance the state of science to validate or refine bereavement services. It brings to light the issue that bereavement service outcomes need to be carefully researched so that evidence can drive service refinement and expansion. It also highlights the importance of effective bereavement services.

The objective of this article was to explore the extent of the scientific literature and evidence base about the psychosocial needs of students conducting research in the fields of advanced cancer and palliative care.

A scoping review was conducted in major scientific databases. English-language articles on the topic of interest were retained if they were published in peer-reviewed journals between 1995 and 2013.

A total of 3,161 references were screened, and 7 were retained for analysis. Only two articles were empirical studies involving the collection of primary empirical data. The remaining ones were commentaries and personal reflections. While there is a near absence of empirical research about the psychosocial needs of students, several commentaries suggest that students in this field have a high need for support. Three themes were identified in the limited literature retrieved: (1) the importance of proper training and supervision; (2) the availability of emotional support structures; and (3) the use of effective and deliberate self-care strategies.

This scoping review demonstrates that little is known about the psychosocial needs of students conducting research in advanced cancer and palliative care. However, what is clear is that there is a large emotional impact on student researchers engaged in this type of work. Adequate training and support is needed to promote students' health and well-being, encourage retention of students, and foster high-quality studies. More empirical data are needed to better understand the experiences of students conducting this type of research and to ensure the sustainability of training and research in this field.

Leptomeningeal metastasis (LM) is a neurooncological complication of advanced cancer that has a poor prognosis. The incidence of LM is increasing due to advances in neuroimaging. At the same time, the development of new systemic treatments with poor central nervous system penetration has improved outcomes and survival. However, diagnosis of LM remains quite difficult due to clinical polymorphism, inconsistent imaging abnormalities, and the inconsistent presence of neoplastic cells in cerebrospinal fluid. Psychiatric manifestations can blur the neurological frame and confound management of this complication.

To illustrate these difficulties, we report the case of a patient with no past psychiatric history who presented with a manic episode that was attributed to a recurrence of leptomeningeal metastasis.

With this case report, we highlight the importance of referring the patient to a psychiatrist or a member of the psychooncology unit when new behavioral disorders present.

Leptomeningeal metastases can elicit psychiatric consequences. A hypothesis of this diagnosis should be considered for cancer patients who present with sudden or recent profound mental changes during the course of their disease. Oncologists and neurooncologists should be aware of this possibility. Collaboration with a psychooncologist is recommended to better manage this neuropsychiatric pathology.