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.

Delirium is prevalent, difficult to assess, under-recognized, and undertreated in hospice and palliative care settings. Furthermore, it is associated with significant morbidity and mortality. Under-recognition of delirium results in under-treatment and increased suffering. The intent of this study was to retrospectively evaluate the recognition of delirium in a large cohort of hospice patients by interdisciplinary hospice care teams.

A retrospective chart review of 2,716 patients receiving hospice care was conducted in order to determine the baseline rate of recognition of delirium in patients with advanced, life-threatening illnesses by front-line hospice clinicians. Documentation of “delirium” as either a diagnosis or problem was used as an estimate of how often these disorders were considered significant issues by the treating interdisciplinary team.

Of the patients receiving home/long-term care, 17.8% (386/2168) had delirium documented as a diagnosis or significant problem. The presence of recognized delirium in this setting was associated with significant differences in marital status, ethnicity, hospice diagnosis, and age. Total length of hospice care was also significantly longer. Of patients receiving inpatient care, 28.3% (614/548) had delirium documented as a diagnosis or significant problem. Recognized delirium in this setting was associated with significant differences in gender, ethnicity, hospice diagnosis, and length of inpatient stay.

If documentation is representative of the care that the interdisciplinary teams provide, delirium of any kind appears to be under-recognized in this population. In fact, it is on the low end of prevalence estimates in the literature. Improved delirium assessment is needed in order to minimize the impact of delirium on patients living with advanced, life-threatening illnesses and their caregivers.

Oncology nursing is stressful by its nature, and nurses in the field experience a high amount of stress and burnout. In order to cope with occupational stress, nurses need to employ flexible adjustment mechanisms that allow them the power to process their experiences. Failure of efficient stress management causes burnout, and burnout is closely related to powerlessness. It is therefore believed that the occurrence of burnout can be reduced by means of psychological empowerment of nurses. Our study was conducted to determine the effect of a “psychodrama-based psychological empowerment program” on (1) the perception of empowerment and (2) the levels of burnout in oncology nurses.

The sample was made up of 82 oncology nurses (38 nurses in the study group and 44 in the control/comparison group). Study data were collected using the Psychological Empowerment Scale, the Nurse Work Empowerment Scale, and Maslach's Burnout Inventory. The study group attended a “psychodrama-based psychological empowerment program” (2 hours, 1 day a week, for 10 weeks). For data assessment, we employed an independent t test and one-way analysis of variance.

The psychological empowerment and workplace empowerment scores of nurses in the study group increased and their burnout scores decreased following attendance in the psychodrama-based psychological empowerment program.

We found that the psychodrama-based psychological empowerment program increased psychological empowerment and enhanced perception of workplace empowerment while decreasing levels of burnout in oncology nurses. The program is recommended and should allow oncology nurses to benefit from their personal experiences and thus increase self-empowerment, to enhance their perception of empowerment, and to prevent burnout.

Providing care to a loved one with cancer places demands on caregivers that result in changes to their daily routines and disruptions to their social relationships that then contribute to loneliness. Though caregivers’ psychosocial challenges have been well studied, loneliness — a determinant of health — has not been well studied in this population. This narrative review sought to describe the current evidence on loneliness among caregivers of cancer patients. We aimed to (1) define loneliness, (2) describe its prevalence, (3) describe the association between loneliness and health outcomes, (4) describe risks and consequences of loneliness among cancer caregivers, (5) identify ways to assess loneliness, and (6) recommend strategies to mitigate loneliness in this unique population.

We used evidence from articles listed in PubMed, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases, book chapters, and reports. Articles were reviewed for the following inclusion criteria: (1) published in English, (2) caregivers of cancer patients, (3) loneliness as a study variable, and (4) peer-reviewed with no restriction on the timeframe of publication. Caregivers were defined as relatives, friends, or partners who provide most of the care and support for someone with cancer.

Eighteen studies met inclusion criteria and were included in the analysis. Caregivers’ experiences of loneliness can contribute to negative effects on one's social, emotional, and physical well-being. Social support interventions may not be sufficient to address this problem. Existing recommendations to mitigate loneliness include cognitive and psychological reframing, one-on-one and group therapy, befriending, resilience training, and technology-based interventions.

Limited attention to loneliness in cancer caregivers poses a twofold problem that impacts patient and caregiver outcomes. Interventions are critically needed to address loneliness as a determinant of health in caregivers, given their pivotal role in providing care and impacting health outcomes for people with cancer.

Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to live up to that potential. This qualitative interpretive study was designed to explore the process and outcomes of ACP using the patient-centered Advance Care Planning Interview (PC-ACP) developed by the Respecting Choices® program in Wisconsin.

Patients diagnosed with advanced lung cancer and close family members were recruited. Nine family dyads participated in the PC-ACP interview, which was audio-recorded. Follow-up interviews took place 3 and 6 months after the PC-ACP interview and were also recorded. Thematic analysis was conducted on transcribed interviews using constant comparison.

Analysis showed that hope was a significant theme in the ACP process and this article reports on that theme. Hope for a cure was one of many hopes that supported quality of life for the participant dyads. Three themes were identified: hope is multifaceted, hope for a cure is well considered, and hope is resilient and persistent. The seeming paradox of hoping for a cure of an incurable cancer did not interfere with the process of ACP. The dyads engaged in explicit discussions of end-of-life scenarios and preferences for care. ACP did not interfere with hope and hope for a cure did not interfere with ACP.

Concerns about false hope are called into question. The principle of honoring hope is not necessarily in conflict with the principle of truthful communication. This is clinically significant, as the findings suggest we need not disrupt hope that we think of as “unrealistic” as long as it supports the family to live well. Further, ACP can be successful even in the context of hoping for a cure.

The purpose of this study was to determine the effect of acupressure applied to the pericardium 6 (P6 or neiguan) acupuncture point on chemotherapy-induced nausea, vomiting, and anxiety in patients with breast cancer.

The study was conducted using a quasi-experimental model with a control group. It included a total of 64 patients with stages 1–3 breast cancer who received cycle two and more advanced chemotherapy in an ambulatory chemotherapy unit. There were 32 patients in the experimental group and 32 patients in the control group. Acupressure was applied to the P6 acupuncture point of patients in the experimental group with the help of a wristband. A Patient Information Form, the Beck Anxiety Inventory, and the Index of Nausea, Vomiting and Retching were employed to collect the data.

It was determined that the mean nausea, vomiting, and retching scores, the total (experience, occurrence, and distress) scores, and the mean anxiety scores for patients to whom acupressure was applied at the P6 acupuncture point were statistically significantly lower compared with the scores of patients in the control group.

The efficacy of applying acupressure was demonstrated. We determined that applying acupressure at the P6 point is effective in decreasing chemotherapy-induced nausea, vomiting, and anxiety in patients with breast cancer. Further research with more subjects is needed.

To develop a communication skills training module for health care professionals about how to conduct a family meeting in palliative care and to evaluate the module in terms of participant self-efficacy and satisfaction.

Forty multispecialty health care professionals from the New York metropolitan area attended a communication skills training module at a Comprehensive Cancer Center about how to conduct a family meeting in oncology. The modular content was based on the Comskil model and current literature in the field.

Based on a retrospective pre–post measure, participants reported a significant increase in self-efficacy about their ability to conduct a family meeting. Furthermore, at least 93% of participants expressed their satisfaction with various aspects of the module by agreeing or strongly agreeing with statements on the course evaluation form.

Family meetings play a significant role in the palliative care setting, where family support for planning and continuing care is vital to optimize patient care. Although these meetings can be challenging, this communication skills module is effective in increasing the confidence of participants in conducting a family meeting.

With over two million deaths and almost 100 million confirmed cases, the COVID-19 pandemic has caused a “tsunami of suffering.” Health care workers, including palliative care workers, have been severely impacted. This study explores how the COVID-19 pandemic has impacted palliative care workers around the world and describes the coping strategies they have adopted to face their specific situation.

We conducted a qualitative analysis of written, unstructured comments provided by respondents to a survey of IAHPC members between May and June 2020. Free text was exported to MAX QDA, and a thematic analysis was performed by reading the comments and developing a coding frame.

Seventy-seven palliative care workers from 41 countries submitted at least one written comment, resulting in a data corpus of 10,694 words and a total of 374 coded comments. Eight main themes are emerged from the analysis: palliative care development, workforce impact, work reorganization, palliative care reconceptualization, economic and financial impacts, increased risk, emotional impact, and coping strategies.

The pandemic has had a huge impact on palliative care workers including their ability to work and their financial status. It has generated increased workloads and placed them in vulnerable positions that affect their emotional well-being, resulting in distress and burnout. Counseling and support networks provide important resilience-building buffers. Coping strategies such as team and family support are important factors in workers’ capacity to adapt and respond. The pandemic is changing the concept and praxis of palliative care. Government officials, academia, providers, and affected populations need to work together to develop, and implement steps to ensure palliative care integration into response preparedness plans so as not to leave anyone behind, including health workers.

The aim of this study was to learn how music therapy sessions, held prior to the death of a loved one, impact spirituality in surviving caregivers of advanced cancer patients.

The method of naturalistic inquiry was used to investigate the spiritual meaning of pre-loss music therapy sessions. Bereaved caregivers of seven different patients, who had been receiving music therapy through a home-based hospice program, participated in individual open-ended interviews. Interviews were recorded, transcribed, and coded. Themes were organized as they emerged.

As caregivers reflected on their experiences in music therapy, they reported autonomous joy (music therapy affected the caregiver directly) and empathic joy (caregivers' joy was based in remembering seeing the patient happy in music therapy). They also noted feelings of empowerment due to the ways they felt they had contributed in the care of the patients through music therapy. The caregivers were found to engage in processes of reflection that inspired these spiritual themes: reflection on the present (connectedness), reflection on the past (remembrance), and reflection on the future (hope). They referred to the ways that the music therapy sessions helped them find connection with self, others (through bringing their loved ones “back to life” and have a “renewal of self”), and the “beyond”; and that times in music therapy brought them happy memories and sentiments of hope. Meaning through transcendence was found to be the overarching trend in this study, as caregivers were lifted from remorse into heightened sense of meaning and gained “airplane views” of their lives.

Pre-loss music therapy can potentially assist caregivers during times of bereavement, as they retain memories of joy and empowerment, rather than memories of pain and distress, and find meaning through transcendence.

Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers.

The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6–8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire.

A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as “knowing what to expect in the future,” “knowing who to contact if concerned,” and “equipment to help care.” The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family.

The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people with a motor neurone disease.

The primary purpose of this metasynthesis study was to explore the end-of-life experiences of Indigenous peoples by synthesizing the findings of qualitative research.

Sandelowski and Barroso's methodology for synthesizing qualitative research was used and included (a) a comprehensive search, (b) appraising reports of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Research team members guided this process. This team was multidisciplinary and included Indigenous and non-Indigenous researchers from Canada, Australia, New Zealand, and the United States. Following a comprehensive search, 2255 studies were reviewed and assessed against five inclusion criteria: (a) studies on the experiences of Indigenous populations (all genders, 18 + years of age) at the end of life, (b) studies published in English from any country, (c) studies using qualitative and mixed-methods designs, and (d) studies published between 1993 and 2013.

Some 18 studies met the inclusion criteria, and their findings were synthesized. “Preparing the spirit” for transition to the next life was the overarching theme. “Preparing the spirit” occurred within the context of “where we come from.” Processes involved in “preparing the spirit” were healing, connecting, and protecting; through these processes, “what I want at the end of life” was realized. Although not the focus of the metasynthesis, a significant finding was that the studies reviewed identified very clear barriers within healthcare systems and current healthcare provider practices to “preparing the spirit.”

The findings provide a beginning understanding of the end-of-life experiences of Indigenous peoples and a foundation for future research. More interpretive qualitative research is critical if palliative care services, the healthcare system, and healthcare providers are to reduce current barriers to “preparing the spirit” for the journey at the end of life.

Caring for terminally ill patients is complex, stressful, and at times distressing for nurses. Acute care hospitals continue to be the predominant place of death for terminally ill patients in most Western countries. The objective of the present literature review was to explore and gain an in-depth understanding of the experience of providing end-of-life (EOL) care by medical-surgical RNs working in acute care hospitals, to identify knowledge gaps, and to recommend future research.

A comprehensive literature review was conducted using the following electronic databases: CINAHL, MEDLINE, and PsyInfo (from 1992 to October 2012).

The findings from the 16 reviewed studies suggest that nurses felt a strong commitment to help terminally ill patients experience a good death. Nurses reported feeling deeply rewarded and privileged to share the EOL experience with patients/families. Organizational and individual factors influenced nurses' experience. Important challenges were associated with managing the divergent needs of a mixed patient load (i.e., curative and palliative care patients) in a biomedical culture of care that is heavily oriented toward cure and recovery. In this culture, nurses' emotional work and ideals of good EOL care are often not recognized and supported.

Managerial and organizational support that recognize the centrality of emotional work nurses provide to dying patients is needed. More research exploring ways to improve communication among nurses and medical colleagues is essential. Finally, a critical examination of the ideological assumptions guiding nurses' practice of EOL care within the context of acute care is recommended to help reveal their powerful influence in shaping nurses' overall understanding and experience of EOL care.

Motor neuron disease (MND) is an incurable progressive illness, characterized by incessant deterioration of neuromuscular function. Timely commencement of advance care planning (ACP) may enable patients to participate in future care choices. The present systematic review aimed to summarize what is known about the prevalence, content, patient/caregiver benefits, healthcare professional (HCP) awareness/support, and healthcare outcomes associated with ACP in the MND setting.

Quantitative and qualitative studies were identified through database searches and eligibility assessed by one author and verified by her coauthor. Data extraction and quality assessments against standardized criteria were completed by the two authors.

Of the 422 studies identified, 16 were included. The research methods generally lacked rigor. Advance directive (AD) prevalence varied considerably across studies. Disease progression was the strongest predictor of AD completion. ACP processes may clarify patients' wishes and promote communication. HCP attitudes or lack of awareness may limit ACP processes. Varying patient preferences may make flexible approaches and timing necessary.

Important benefits may be associated with ACP in the context of a motor neuron disease (e.g., feelings of control/relief and refusal of unwanted treatments). However, further evidence is required to verify findings and identify optimal streamlined approaches (e.g., use of decision aids) consistent with patients' (and caregivers') needs over time.

Terminally ill patients and family caregivers can benefit greatly from the support and care provided by trained hospice palliative care volunteers. The benefits of doing this kind of volunteer work also extend to the volunteers themselves, who often say they receive more than they give from the patients/families they are “privileged” to be with. The purpose of this article is to demonstrate how hospice palliative care volunteerism benefits both the patients and families who utilize this service as well as the volunteers.

A review of studies demonstrating how terminally ill patients, and especially family caregivers, can benefit from the use of hospice palliative care volunteers and how the volunteers themselves benefit from their experiences.

Terminally ill patients and families receive many benefits from using the services of hospice palliative care volunteers, including emotional support, companionship, and practical assistance (e.g., respite or breaks from caregiving). Volunteering in hospice palliative care also provides many benefits for the volunteers, including being able to make a difference in the lives of others, personal growth, and greater appreciation of what is really important in life.

More needs to be done to promote the value of hospice palliative care volunteers to those who can really benefit from their support and care (i.e., patients and their families) as well as to help people recognize the potential rewards of being a hospice palliative care volunteer. It is a win–win situation.

In the intensive care setting, delirium is a common occurrence that comes with subsequent adversities. Therefore, several instruments have been developed to screen for and detect delirium. Their validity and psychometric properties, however, remain controversial.

In this prospective cohort study, the Confusion Assessment Method for the Intensive Care Unit (CAM–ICU) and the Intensive Care Delirium Screening Checklist (ICDSC) were evaluated versus the DSM–IV–TR in the diagnosis of delirium with respect to their validity and psychometric properties.

Out of some 289 patients, 210 with matching CAM–ICU, ICDSC, and DSM–IV–TR diagnoses were included. Between the scales, the prevalence of delirium ranged from 23.3% with the CAM–ICU, to 30.5% with the ICDSC, to 43.8% with the DSM–IV–TR criteria. The CAM–ICU showed only moderate concurrent validity (Cohen's κ = 0.44) and sensitivity (50%), but high specificity (95%). The ICDSC also reached moderate agreement (Cohen's κ = 0.60) and sensitivity (63%) while being very specific (95%). Between the CAM–ICU and the ICDSC, the concurrent validity was again only moderate (Cohen's κ = 0.56); however, the ICDSC yielded higher sensitivity and specificity (78 and 83%, respectively).

In the daily clinical routine, neither the CAM–ICU nor the ICDSC, common tools used in screening and detecting delirium in the intensive care setting, reached sufficient concurrent validity; nor did they outperform the DSM–IV–TR diagnostic criteria with respect to sensitivity or positive prediction, but they were very specific. Thus, the non-prediction by the CAM–ICU or ICDSC did not refute the presence of delirium. Between the CAM–ICU and ICDSC, the ICDSC proved to be the more accurate instrument.

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.