The aim of this research project was to gain an understanding of the experiences of rural cancer patients who commute to an urban cancer center for palliative care.

The study utilized a mixed method design. Fifteen individuals with a palliative designation participated in semi-structured interviews and filled out the Problems and Needs in Palliative Care Questionnaire.

Qualitative findings included three major themes: cultures of rural life and care, strategies for commuting, and the effects of commuting. Participants valued their rural lifestyles and gained significant support from their communities. Strategies included preparing for the trip with particular attention to pain management, making the most of time, and maintaining significant relationships. Establishing a routine helped to offset the anxiety of commuting. Commuting was costly but the quality of life and supportive relationships obtained through treatment were significant benefits. Questionnaire data suggested that participants were experiencing a number of problems but few indicated they desired more professional attention to those problems.

Rural lifestyles are often an important part of overall well-being and commuting for care is both costly and complex. Health care providers should assist individuals to weigh the relative contributions of staying in their rural locale versus commuting for care to their overall quality of life. Palliative-care individuals in this study indicated a number of ongoing problems but were not inclined to seek further assistance from health care providers in addressing those problems. Clinicians should actively inquire about problems and further research is needed to understand why patients are reluctant to seek help.

The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives.

Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis.

All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable.

The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.

Dementia is a terminal illness, and family caregivers play a vital role in providing end-of-life care to their relative. The present study begins to address the paucity of research regarding end-of-life caregiving experience with dementia.

This study utilized Munhall's methodology for interpretive phenomenology. Seven women and four men were interviewed two to three times within a year of their relative's death; interviews were transcribed verbatim and hermeneutically analyzed.

Findings reveal two essential aspects of end-of-life dementia caregiving: being-with and being-there. Further findings are organized according to the existential life worlds. Examination of the life worlds demonstrates that 1) spatiality provided a sense or lack of feeling welcome to provide end-of-life care; 2) temporality was an eternity or time melting away quickly, or the right or wrong time to die; 3) corporeality revealed feelings of exhaustion; and 4) relationality was felt as a closeness to others or in tension-filled relationships.

An understanding from bereaved caregivers’ perspectives will help healthcare practitioners better support and empathize with family caregivers. Further research is warranted that focuses on other places of death and differences in experience based on gender or relationship to the care receiver.

This study investigated relationships among spirituality, hope, and overall quality of life in Muslim women with breast cancer in Malaysia.

A cross-sectional descriptive design with a convenience sample of 145 Malay patients was used. The mediating role of hope in the relationship between spirituality and quality of life as well as the moderating effect of education level on the spirituality hope link were examined.

Participants with higher self-reported spirituality reported more hope (b = 6.345, p < 0.001) and higher levels of quality of life (b = 1.065, p < 0.001). Higher educational attainment weakened relationships between spirituality and hope (b = −1.460, p < 0.001).

The role of advanced education in contributing to lessened hope in relation to spirituality emphasizes the importance of skilled and personalized spiritual counseling in the respective socio-cultural religious context.

Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC).

The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs.

A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic.

The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.

Difficulties with diagnosis and aggressive, long-term treatment may result in lower quality of life (QOL), including high levels of anxiety, depression, and uncertainty, greater symptom distress, and lower overall QOL among women with avarian cancer. The purpose of this study was to describe demographic, clinical, and other risk factors associated with compromised QOL among women who have undergone surgery for avarian malignancies.

Subjects were recruited to participate in a clinical trial that tested a specialized nursing intervention addressing psychological and physical care among women post-surgical for avarian cancer. QOL was measured using five standardized self-report measures: the State-Trait Anxiety Scale (SAS), the Center for Epidemiological Studies Depression Scale (CES-D), the Mishel Uncertainty in Illness Scale (MUIS), the Symptom Distress Scale (SDS), and the Short-Form Health Survey (SF-12). Baseline data were collected while women were hospitalized following surgery.

The sample (n=145) included women with avarian cancer (58%) and other cancers metastasized to the avaries and abdomen (42%). Mean scores on the measures were consistent with or higher than previously reported means for similar populations. Women reporting the lowest QOL were more likely to be younger, more educated, and have early stage disease.

Women who have undergone surgery for ovarian malignancies have psychological needs that are often considered secondary to physical needs. Interventions should include routine screening for distress and referral to appropriate psychological and social services, thereby facilitating quality cancer care.

Many cancer patients report changes in how they experience meaning in life and being confronted with life's limitations, understanding themselves as being vulnerable, finite, and free beings. Many would like to receive psychotherapeutic help for this. However, psychotherapy for these concerns often either focuses primarily on meaning in life (e.g., meaning-centered/logotherapy) or on existential givens (e.g., supportive–expressive therapy). The relationship between meaning in life and existential givens seems relatively unexplored, and it seems unclear how therapists can integrate them. The present article aims to explore the relationship between meaning and existential givens.

Martin Heidegger was a founder of existentialism, inspiring both meaning therapies and supportive–expressive therapies. Therefore, we systematically apply his understanding of these phenomena, elucidated by four elements in his central metaphor of “the house.”

(1) Walls: In everyday life, we construct ordinary meanings, like the walls of a house, to protect us from our surroundings, wind, and rain. (2) Surroundings (“existential givens”): Confronted with cancer, the meanings/walls of this house may collapse; people may start seeing their surroundings and understand that they could have built their house at a different location, that is, they understand the broad range of possibilities in life, their responsibility to choose, and the contingency of current meanings. (3) How to design, build, and dwell: People may design, build, and dwell in their house in different ways: they may lock themselves in their house of impermeable “ordinary meanings” and deny the existence of existential surroundings; they may feel overwhelmed by all possibilities and be unable to experience meaning; they may build the house as their true home, use life's possibilities, and listen to their true self by building permeable “existential meanings.” (4). Navigator: People may experience inner guidance to navigate in designing, building, and dwelling in this house.

Meaning in life and existential givens are intertwined. Therefore, we suggest that it is necessary for psycho-oncologists to address both. Further clinical validation is required.

Exposure to the death and dying of others is an anxiety-provoking condition that can contribute to psychological stress. However, the results of empirical studies that evaluated work-related outcomes among physicians and nurses with repeated exposure to dying patients are not consistent.

Our aim was to evaluate whether a high level of exposure to death and dying (LED) can increase the risk for poor professional quality of life (ProQoL) in most healthcare workers, but it can also improve ProQoL in a subset of healthcare workers with specific characteristics.

We employed a cross-sectional survey designed to better understand the role of LED as a predictor of ProQoL among healthcare workers.

Comparison of physicians and nurses with high LED (home-based palliative care units) with a matched group of physicians and nurses with low LED (primary care units) and evaluation of possible interaction effects among LED, death anxiety (DA), and engagement as predictors of ProQoL.

The final sample included 110 questionnaires from the high-LED group (response rate = 39%) and 131 from the low-LED (response rate = 24%) group. Workers with high LED reported an increased level of compassion satisfaction (CS) and low to moderate levels of burnout (BU) and secondary traumatic stress (STS), with no significant differences with respect to other healthcare providers. Although levels of CS, STS, and BU did not differ between groups, a univariate MANOVA revealed that the interaction effect of LED × Engagement reduced levels of CS and that the interaction effect of LED × DA increased STS among workers with high LED.

LED was significantly correlated with ProQoL among healthcare workers with high LED due to the reported interaction effect. These findings imply, for the first time, that there is a possible correlation between engagement and the risk for poor ProQoL among workers with high LED. Further research is essential to gain a better understanding of this issue.

Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.

Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.

Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.

Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

Management of patient distress is a critical task in cancer nursing and cancer practice. Here we describe two examples of how an electronic patient-reported outcome (ePRO) measurement system implemented into routine oncology care can practically aid clinical and research tasks related to distress management.

Tablet personal computers were used to routinely complete a standardized ePRO review of systems surveys at point of care during every encounter in the Duke Oncology outpatient clinics. Two cases of use implementation are explored: (1) triaging distressed patients for optimal care, and (2) psychosocial program evaluation research.

Between 2009 and 2011, the ePRO system was used to collect information during 17,338 Duke Oncology patient encounters. The system was used to monitor patients for psychosocial distress employing an electronic clinical decision support algorithm, with 1,952 (11.3%) referrals generated for supportive services. The system was utilized to examine the efficacy of a psychosocial care intervention documenting statistically significant improvements in distress, despair, fatigue, and quality of life (QOL) in 50 breast cancer patients.

ePRO solutions can guide best practice management of cancer patient distress. Nurses play a key role in implementation and utilization.

The general population has been involved in considerable debate about communication and awareness within the context of death and dying. However, there has been little research on how matters of communication on this topic are handled for people with life-limiting illness and intellectual disabilities. This qualitative study explored how staff managed communication about death and dying with people with intellectual disabilities in a Health Service Executive area in Ireland.

Ninety-one individuals took part in 16 focus groups. Interviews were analysed using framework analysis.

Participants infrequently discussed death and dying with people with intellectual disabilities. Participants operated most commonly in suspicious awareness environments with people with mild-to-moderate intellectual disabilities, and closed awareness environments with people with severe intellectual disabilities. The majority of participants did not hold absolute opinions that talking about illness, death, and dying with people with intellectual disabilities was “wrong.” Rather, they were concerned that their lack of skill and experience in the area would cause harm if they engaged in open conversations. Relatives had an influential role on the process of communication. Participants were strongly motivated to provide quality care and were willing to consider alternative approaches to communication if this would benefit people with intellectual disabilities.

Although there has been a shift toward conditional open awareness of death and dying in Western society, people with intellectual disabilities have not been afforded the same opportunity to engage in open discussion of their mortality. This study points to the urgent need to engage in debate about this issue in order to ensure that people with intellectual disabilities receive high quality palliative care toward the end of life.

Most research examining the impact of patients seeking online health information treats internet information homogenously, rather than recognizing that there are multiple types and sources of available information. The present research was conducted to differentiate among sources and types of internet information that patients search for, intend to discuss with their doctors, and recall discussing with their doctors, and to determine how accurate and hopeful patients rate this information.

We surveyed 70 breast cancer patients recruited from the waiting rooms of breast medical oncology and surgery clinics. The main variables in the study were as follows: (1) the sources and types of online information patients have read, intended to discuss, and actually discussed with their doctors, and (2) how accurately and hopefully they rated this information to be.

Patients read information most frequently from the websites of cancer organizations, and most often about side effects. Patients planned to discuss fewer types of information with their doctors than they had read about. They most often intended to discuss information from cancer organization websites or WebMD, and the material was most often about alternative therapies, side effects, and proven or traditional treatments. Some 76.8% of total participants rated the information they had read as very or somewhat accurate, and 61% rated the information they had read as very or somewhat hopeful.

Internet information varies widely by source and type. Differentiating among sources and types of information is essential to explore the ways in which online health information impacts patients' experiences.

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.

Breathlessness is the most common devastating symptom of advanced chronic obstructive pulmonary disease (COPD). The Breathlessness Intervention Service (BIS) is a multidisciplinary service that uses both pharmacological and non-pharmacological evidence-based interventions to reduce the impact of the symptom. The results of a Phase II evaluation of the service are reported.

Pretest - posttest analysis of non-randomized data was performed for 13 patients with severe advanced COPD referred to BIS.

Mean VAS-Distress scores (primary outcome measure) decreased (improved) for the group between baseline and follow up suggesting a clinically significant improvement: 6.88 (SD = 2.50) to 5.25 (SD = 2.99). At an individual level, 11 of the 13 patients showed a decrease in their distress due to breathlessness, and for eight of these this was clinically significant (range of all decreases 0.3–7.1 cm). Changes in secondary outcome measures are also reported.

The Breathlessness Intervention Service appears to reduce distress due to breathlessness among patients with advanced COPD. A Phase III fully-powered randomized controlled trial is warranted.

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.