Parkinson's disease (PD) is a progressive neurodegenerative condition often resulting in significant disability and impacting on one's ability to participate in an occupation. The present study aimed to explore how people with advanced Parkinson's disease experience the phenomenon of occupation in their daily lives in order to inform the practice of occupational therapy in palliative care.

Using a phenomenological approach, in-depth interviews were undertaken with a purposive sample of 10 people in the advanced stages of Parkinson's disease. These interviews were audiotaped, transcribed verbatim, and subsequently analyzed using a thematic content analysis approach. The study received approval from the relevant university ethics committee, as well as the research network of Parkinson's UK.

The experience of occupation emerged as being physical, psychological, social, and spiritual with related subthemes. Within each of these themes, participants described their experience of occupation that they valued and that were important to their daily lives. They also identified the strategies they employed to continue participating in certain occupations and described others they were no longer able to engage in and the impact of that loss.

Participants' experiences crossed the domains of palliative care and suggest that adopting a palliative care approach would enhance an enhanced quality of life, experienced in terms of meaningful and valuable occupation. Disruption to participation in occupation caused them distress and frustration, suggesting that access to occupation-focused therapy would significantly improve quality of life for people with PD. As there is a strong link between the ethos of occupational therapy and palliative care, it is proposed that there is a valuable role for occupational therapy intervention to play within palliative care.

This project evaluated the psychometric properties of a translated version of the Head and Neck Cancer Inventory (HNCI) for use with Japanese patients. The HNCI is a measure for assessing the quality of life (QoL) of head and neck cancer patients and survivors. The present study was aimed at investigating the reliability and validity of this translated instrument.

Some 165 patients with head and neck cancer (HNC) were enrolled at the Tokyo Medical and Dental University Hospital. The instrument's internal consistency and test–retest reliability were evaluated. Criterion-related validity was assessed by correlations between the HNCI and the Functional Assessment of Cancer Therapy–Head and Neck (FACT–H&N) scales.

Some 29 of the 30 items in the original version were selected to comprise the Japanese version of the HNCI (Japanese HNCI). Investigation of criterion-related validity using the FACT–H&N demonstrated significant correlations (Spearman's ρ = 0.47–0.63). The value of Cronbach's α for each subscale ranged from 0.84 to 0.87. Test–retest reliability showed an intraclass correlation coefficient (ICC) of 0.62–0.79.

The reliability and validity of the Japanese HNCI were evaluated. Although its classification is different from the original U.S. version, the Japanese HNCI is a self-administered questionnaire that can assess quality of life (QoL) in patients with head and neck cancer.

Psychosocial interventions directed to couples where one has advanced cancer can reduce distress, enhance communication, and provide an opportunity for relational growth. The present study aimed to develop an intervention to facilitate communication about living with advanced cancer using the Patient Dignity Inventory (PDI) as the focus of a clinical interview with couples toward the end of life.

Couples were recruited from oncology and palliative care services at a Sydney hospital. After the PDI was developed and manualized as an intervention for couples, the PDI–Couple Interview (PDI–CI) was delivered by a clinical psychologist and comprised the following: (1) the patient completed the PDI; (2) the patient's identified partner completed the PDI about how they thought the patient was feeling; and (3) the clinician reviewed the results with the couple, summarizing areas of concurrence and discordance and facilitating discussion.

Some 34 couples were referred, of which 12 consented, 9 of whom completed the clinical interview. Reported benefits included enabling couples to express their concerns together, identifying differences in understanding, and giving “permission to speak” with each other. The focus of the interview around the PDI provided a structure that was particularly acceptable for men. Most couples confirmed that they were “on the same page,” and where differences were identified, it provided a forum for discussion and a mutual understanding of the challenges in managing advanced cancer within a supportive context.

Participant couples' experiences of the PDI–CI provide valuable insight into the benefits of this intervention. This preliminary study indicates that the intervention is a relatively simple means of enhancing closer communication and connection between couples where one has advanced cancer and may be an important adjunct in helping prepare couples for the challenges inherent toward the end of life. Further investigation of feasibility with a larger sample is recommended.

A steady increase in the number of patients requiring end-of-life care has been observed during the last decades. The assessment of healthcare students' attitudes toward end-of-life care is an important step in their curriculum, as it provides information about their disposition to practice palliative medicine. The Frommelt Attitude Toward Care of the Dying Scale (FATCOD–B) was developed to detect such a disposition, but its psychometric properties are yet to be clearly defined.

A convenience sample of 608 second-year medical students participated in our study in the 2012/2013 and 2013/2014 academic years. All participants completed the FATCOD–B. The sample was randomly divided in two subsamples. In the item analysis, reliability (Cronbach's α), internal consistency (item–total correlations), and an exploratory factor analysis (EFA) were conducted using the first subsample (n = 300). Using the second subsample (n = 308), confirmatory factor analysis (CFA) was performed using the robust ML method in the Lisrel program.

Reliability for all items was 0.699. Item–total correlations, ranging from 0.03 to 0.39, were weak. EFA identified a two-dimensional orthogonal solution, explaining 20% of total variance. CFA upheld the two-dimensional model, but the loadings on the dimensions and their respective indicators were weak and equal to zero for certain items.

The findings of the present study suggest that the FATCOD–B measures a two-dimensional construct and that several items seem in need of revision. Future research oriented toward building a revised version of the scale should pay attention to item ambiguity and take particular care to distinguish among items that concern emotions and beliefs related to end-of-life care, as well as their subjects (e.g., the healthcare provider, the patient, his family).

Despite the availability of palliative care in many countries, legalization of euthanasia and physician-assisted suicide (EAS) continues to be debated—particularly around ethical and legal issues—and the surrounding controversy shows no signs of abating. Responding to EAS requests is considered one of the most difficult healthcare responsibilities. In the present paper, we highlight some of the less frequently discussed practical implications for palliative care provision if EAS were to be legalized. Our aim was not to take an explicit anti-EAS stance or expand on findings from systematic reviews or philosophical and ethico-legal treatises, but rather to offer clinical perspectives and the potential pragmatic implications of legalized EAS for palliative care provision, patients and families, healthcare professionals, and the broader community.

We provide insights from our multidisciplinary clinical experience, coupled with those from various jurisdictions where EAS is, or has been, legalized.

We believe that these issues, many of which are encountered at the bedside, must be considered in detail so that the pragmatic implications of EAS can be comprehensively considered.

Increased resources and effort must be directed toward training, research, community engagement, and ensuring adequate resourcing for palliative care before further consideration is given to allocating resources for legalizing euthanasia and physician-assisted suicide.

Our aim was to develop and test a brief measure of generativity and ego-integrity that is suitable for use in palliative care settings.

Two measures of generativity and ego-integrity were modified and combined to create a new 11-item questionnaire, which was then administered to 143 adults. A principal-component analysis with oblique rotation was performed in order to identify underlying components that can best account for variation in the 11 questionnaire items.

The two-component solution was consistent with the items that, on conceptual grounds, were intended to comprise the two constructs assessed by the questionnaire.

Results suggest that the selected 11 items were good representatives of the larger scales from which they were selected, and they are expected to provide a useful means of measuring these concepts near the end of life.

Many patients approaching death experience hopelessness, helplessness, and a depressed mood, and these factors can contribute to a difficult end-of-life (EoL) period. Biography services may assist patients in finding meaning and purpose at this time. The aim of our study was to investigate the lived experience of volunteers involved in a biography service in Melbourne, Australia, using a qualitative methodology.

The participants were 10 volunteers who had participated in a biography service within a private palliative care service. Each volunteer was interviewed separately using a study-specific semistructured interview guide. The transcripts of these interviews were then subjected to thematic analysis.

Analysis yielded the following themes: motivations for volunteering; dealing with death, dying, and existential issues; psychosocial benefits of volunteering; and benefits and challenges of working with patients and their families. Our results indicated that volunteering gave the volunteers a deeper appreciation of existential issues, and helped them to be more appreciative of their own lives and gain a deeper awareness of the struggles other people experience. They also suggested that volunteers felt that their involvement contributed to their own personal development, and was personally rewarding. Furthermore, the results highlighted that volunteers found that encounters with family members were sometimes challenging. While some were appreciative, others imposed time limits, became overly reliant on the volunteers, and were sometimes offended, hurt, and angered by what was included in the final biography.

It is hoped that the findings of the current study will provide direction for improvements in the biography services that will benefit patients, family members, and volunteers. In particular, our findings highlight the need to provide ongoing support for volunteers to assist them in handling the challenges of volunteering in a palliative care setting.

Electronic health records (EHRs) may contain infomarkers that identify patients near the end of life for whom it would be appropriate to shift care goals to palliative care. Discovery and use of such infomarkers could be used to conduct effectiveness research that ultimately could help to reduce the monumental cost of caring for the dying. The aim of our study was to identify changes in the plans of care that represent infomarkers, which signal a transition of care goals from nonpalliative care ones to those consistent with palliative care.

Using an existing electronic health record database generated during a two-year longitudinal study of nine diverse medical–surgical units from four Midwest hospitals and a known group approach, we evaluated patient care episodes for 901 patients who died (mean age = 74.5 ± 14.6 years). We used ANOVA and Tukey's post-hoc tests to compare patient groups.

We identified 11 diagnoses, including Death Anxiety and Anticipatory Grieving, whose addition to the care plan, some of which also occurred with removal of nonpalliative care diagnoses, represent infomarkers of transition to palliative care goals. There were four categories of patients, those who had: no infomarkers on plans (n = 507), infomarkers added on the admission plan (n = 194), infomarkers added on a post-admission plan (minor transitions, n = 109), and infomarkers added and nonpalliative care diagnoses removed on a post-admission plan (major transition, n = 91). Age, length of stay, and pain outcomes differed significantly for these four categories of patients.

EHRs contain pertinent infomarkers that if confirmed in future studies could be used for timely referral to palliative care for improved focus on comfort outcomes and to identify palliative care subjects from data repositories in order to conduct big-data research, comparative effectiveness studies, and health-services research.

The potential influence of patient religious and spiritual beliefs on the approach to end-of-life care and resuscitation status preferences is not well understood. The aim of this study was to assess the association between religiosity and resuscitation preferences in advanced-cancer patients.

We performed a secondary analysis of a randomized controlled trial that evaluated the influence of physician communication style on patient resuscitation preferences. All patients completed the Santa Clara Strength of Religious Faith Questionnaire–Short Form (SCSRFQ–SF) and expressed their resuscitation preferences. We determined the frequency of resuscitation preferences and its association with intensity of religiosity.

A total of 78 patients completed the study. The median age was 54 years, with a range of 18–78. Some 46 (59%) were women; 57 patients (73%) were Caucasian, 15 (19%) African American, and 5 (7%) Hispanic. A total of 46 patients (56%) were Protestant and 13 (17%) Catholic. Some 53 of 60 patients who chose Do Not Resuscitate status (DNR) (88%) and 16 of 18 patients who refused DNR (89%) for a video-simulated patient were highly religious (p = 0.64). When asked about a DNR for themselves after watching the videos, 43 of 48 who refused DNR (90%) and 26 of 30 patients who chose DNR (87%) were highly religious (p = 0.08). The Spearman correlation coefficient for patients choosing DNR for themselves and intensity of religiosity was r = –0.16 (p = 0.16). Some 30 patients (38%) who chose DNR for the video patient refused DNR for themselves, and 42 who chose DNR for both the video patient and themselves (54%) were highly religious (p = NS).

There was no significant association between intensity of patient religiosity and DNR preference for either the video patient or the patients themselves. Other beliefs and demographic factors likely impact end-of-life discussions and resuscitation status preferences.

The research about follow-up patterns of women attending high-risk breast-cancer clinics is sparse. This study sought to profile daughters of breast-cancer patients who are likely to return versus those unlikely to return for follow-up care in a high-risk clinic.

Our investigation included 131 patients attending the UCLA Revlon Breast Center High Risk Clinic. Predictor variables included age, computed breast-cancer risk, participants' perceived personal risk, clinically significant depressive symptomatology (CES–D score ≥ 16), current level of anxiety (State–Trait Anxiety Inventory), and survival status of participants' mothers (survived or passed away from breast cancer).

A greater likelihood of reattendance was associated with older age (adjusted odds ratio [AOR] = 1.07, p = 0.004), computed breast-cancer risk (AOR = 1.10, p = 0.017), absence of depressive symptomatology (AOR = 0.25, p = 0.009), past psychiatric diagnosis (AOR = 3.14, p = 0.029), and maternal loss to breast cancer (AOR = 2.59, p = 0.034). Also, an interaction was found between mother's survival and perceived risk (p = 0.019), such that reattendance was associated with higher perceived risk among participants whose mothers survived (AOR = 1.04, p = 0.002), but not those whose mothers died (AOR = 0.99, p = 0.685). Furthermore, a nonlinear inverted “U” relationship was observed between state anxiety and reattendance (p = 0.037); participants with moderate anxiety were more likely to reattend than those with low or high anxiety levels.

Demographic, medical, and psychosocial factors were found to be independently associated with reattendance to a high-risk breast-cancer clinic. Explication of the profiles of women who may or may not reattend may serve to inform the development and implementation of interventions to increase the likelihood of follow-up care.

It is common for patients to experience positive and negative psychological changes (e.g., posttraumatic growth or demoralization) after being diagnosed with cancer. Although demoralization and posttraumatic growth are both related to meaning-making, little attention has been paid to the associations among these concepts. The current study investigated the relationship between demoralization, posttraumatic growth, and meaning-making (focusing on sense-making and benefit-finding during the experience of illness) in cancer patients.

Some 200 cancer patients (with lung cancer, lymphoma, or leukemia) at the MacKay Memorial Hospital in New Taipei completed the Demoralization Scale–Mandarin Version (DS–MV), the Chinese Posttraumatic Growth Inventory (CPTGI), and a self-designed questionnaire for assessing sense-making and benefit-finding.

Demoralization was negatively correlated with posttraumatic growth, sense-making, benefit-finding, and time-since-diagnosis. Multiple regression analysis showed that meaning-making had different effects on demoralization and posttraumatic growth. The interactions of sense-making with either benefit-finding or time-since-diagnosis significantly predicted demoralization. Individuals with relatively higher sense-making and benefit-finding or shorter time-since-diagnosis experienced less demoralization.

The suffering of cancer may turn on the psychological process of demoralization, posttraumatic growth, and meaning-making in patients. Cancer patients who evidenced higher posttraumatic growth experienced less demoralization. Trying to identify positive changes in the experience of cancer may be a powerful way to increase posttraumatic growth. As time goes by, patients experienced less demoralization. Facilitating sense-making can have similar effects. Cancer patients with less benefit-finding experience higher demoralization, but sense-making buffers this effect.

Caregiving partners constitute a unique group, who provide both physical and emotional care for patients. There has been extensive research conducted on caregivers during either the caregiving or bereavement phase; however, these phases are often treated as separate entities rather than as part of a continuum.

In this paper, utilizing relevant literature and clinical observations, we map the emotional journey and lived experience of caregivers moving from disease progression, to the end of life, to the dying process itself, and then through life after the death of a partner. Along this journey, we identify the links between pre-death caregiving and bereavement.

Our illustration raises awareness regarding the unmet needs experienced by caregiving partners across the continuum and provides an alternative framework through which clinicians can view this course.

of Results We bolster arguments for improved palliative care services and early interventions with distressed caregiving partners by emphasizing continuity of care both before and after a patient's death.

Our objective was to review how meditation could comfort the terminally ill.

Our methodology was a literature search, which included books, journals, papers in collections, and online databases. The main search engines employed were Google Scholar and the Durham University Library. The main databases consulted were the Christian Meditation Centre, Project Meditation, and Stress-Related Facts and Well-Being at Monash. We were specifically interested in data acquired from clinical and nonclinical trials. The arguments needed to be based on qualitative and quantitative scientific data. Papers were published between 1985 and 2014. We then subdivided the review into three subcategories: physical, emotional, and self-awareness. When reviewing each category, we put our results into tabular form. In each table, we noted the percentage of terminally ill patients (TIPs) and non-terminally ill patients (NTIPs), and whether meditation had comforted them.

Our review demonstrated that there are many areas that have yet to be researched. First, very little work has been done on how meditation affects the physical health of TIPs, including such variables as blood pressure, chronic pain, and sleeping patterns. However, no research has been done on heart disease, hypertension, depression, among others. Second, virtually no research has been conducted on how meditation affects the mental health of TIPs. Notably neglected areas include anxiety, compliance, depression, and stress. Third, no research has been done on whether meditation increases self-awareness in TIPs. In each of these cases, most NTIPs reacted positively; however, no research has been done on why TIPs reacted differently.

Our results demonstrate the need for further research on how meditation affects terminally ill patients. In turn, this would enrich the debate on whether meditation should be prescribed for the dying.

Multimedia interventions are increasingly used to deliver information in order to promote self-care among patients with degenerative conditions. We carried out a realist review of the literature to investigate how the characteristics of multimedia psychoeducational interventions combine with the contexts in which they are introduced to help or hinder their effectiveness in supporting self-care for patients with degenerative conditions.

Electronic databases (Medline, Science Direct, PSYCHinfo, EBSCO, and Embase) were searched in order to identify papers containing information on multimedia psychoeducational interventions. Using a realist review approach, we reviewed all relevant studies to identify theories that explained how the interventions work.

Ten papers were included in the review. All interventions sought to promote self-care behaviors among participants. We examined the development and content of the multimedia interventions and the impact of patient motivation and of the organizational context of implementation. We judged seven studies to be methodologically weak. All completed studies showed small effects in favor of the intervention.

Multimedia interventions may provide high-quality information in an accessible format, with the potential to promote self-care among patients with degenerative conditions, if the patient perceives the information as important and develops confidence about self-care. The evidence base is weak, so that research is needed to investigate effective modes of delivery at different resource levels. We recommend that developers consider how an intervention will reduce uncertainty and increase confidence in self-care, as well as the impact of the context in which it will be employed.