Caregivers often are unprepared for their role yet serve as the frontline in the provision of palliative care services. The aim of our study was to explore family caregivers' experiences from their perspective as they cared for dying relatives.

Using the Photovoice methodology, ten unpaid family caregivers took photographs depicting issues they experienced as informal caregivers of an ill family member who had less than a year to live. Each participant met with the first author individually four to six times and explained their role as caregiver through photographs and stories.

The results were clustered into seven themes: physical demands, emotional/spiritual stress, preparing for the future, securing help, medication management, navigating the agencies, and relationships.

Caregivers perform a variety of tasks, often under stress. This study highlights the main areas where problems lie and the areas that palliative care health professionals need to be aware of so they can assist and educate caregivers, with the goal of finding solutions to the burdens of care. The themes were found to be intertwined, showing the complexity of the caregiving role.

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.

The manner in which personhood or “what makes you who you are” is conceived is key to the provision of patient-centered care and maintenance of the dignity and quality of life of terminally ill patients. However, there is little agreement on how this pivotal concept ought to be defined. Some have argued in favor of an innate concept of personhood, while others see an individual as a reflection of their familial identity or their conscious function, and all share a common position that personhood is unchanging, and hinges upon the central theme of their respective concepts. The present paper aims to explore a more clinically influenced perspective of personhood.

We report the case of a 42-year-old Malay Singaporean who had been a caregiver for her husband throughout his cancer and then became a cancer patient herself after his passing. This case explores her changing and multifaceted conceptions of personhood throughout her life and illness, and discussions about end-of-life care.

The patient reports a concept of personhood that encompasses the innate, individual, relational, and societal aspects, which are interlinked and vary in terms of depth and conviction according to the various times in her life and illness.

Our findings support the ring theory of personhood, which provides a clinically supported model of the conception of personhood that is context dependent and encompasses the four abovementioned aspects.

Reliable and validated instruments are needed in order to study the desire for hastened death (DHD). As there is no instrument in the German language to measure DHD, our aim was to validate a German version of the Schedule of Attitudes Toward Hastened Death (SAHD–D).

The SAHD was translated following guidelines promulgated by the European Organization for Research and Treatment of Cancer (EORTC). In eligible patients (clinical situation adequate, MMSE ≥21), the following instruments were employed: a symptom checklist (HOPE), the HADS–D (Hospital Anxiety and Depression Scale), the EORTC-QLQ-PAL15, and the SAHD–D, as well as an external estimation of DHD provided by the attending physician. A high level of DHD was defined as the mean plus one standard deviation (SD).

Of the 869 patients assessed, 92 were eligible for inclusion (66% females, mean age of 64.5 years). The SAHD–D total score ranged from 0 to 18, with a mean of 5 and a standard deviation (SD) of 3.7. A high level of DHD was found in 20% (n = 19). For discriminant validity, significant correlations were found between the SAHD–D and depression (rrho = 0.472), anxiety (rrho = 0.224), and clinical state (rrho = 0.178). For criterion validity, the external estimate of DHD showed a low significant correlation with patient score (rrho = 0.290). Factor analysis of the SAHD–D identified two factors.

Validation of the SAHD–D illustrated good discriminant validity, confirming that a desire to hasten death is a construct separate from depression, anxiety, or physical state. The unidimensionality of the SAHD could not be reproduced. Our findings support the multifactorial interdependencies on DHD and suggest that the SAHD–D should be refined by considering actual wishes, general attitudes, and options of patients.

From a communication perspective, the term “do not resuscitate” (DNR) is challenging to use in end-of-life discussions because it omits the goals of care. An alternative, “Allow Natural Death” (AND), has been proposed as a better way of framing this palliative care discussion.

We present a case where a nurse unsuccessfully discusses end-of-life goals of care using the term DNR. Subsequently, with the aid of a communication trainer, he is coached to successfully use the term “AND” to facilitate this discussion and advance his goal of palliative care communication and planning.

We contrast the advantages and disadvantages of the term AND from the communication training perspective and suggest that AND-framing language replace DNR as a better way to facilitate meaningful end-of-life communication. One well-designed, randomized, controlled simulation study supports this practice. We also consider the communication implications of “natural” versus “unnatural” death.

To study the efficacy of two modules within the Fundamentals of Palliative Care educational program within a single site. The modules included the concepts of Essence of Palliative Care and Pain and Symptom Management.

A mixed-methods approach incorporating questionnaires and interviews was implemented. Two phases were included. First, a purposive sample of 22 workshop participants were invited to fill out evaluation questionnaires on two occasions (immediately after the session and four weeks as follow-up). Second, semistructured interviews were conducted and interviews transcribed and analyzed using content analysis.

Participants felt they gained further knowledge in palliative patient management and refined their clinical practice. The questionnaire feedback revealed that the Essence of Palliative Care module provided a breadth of content but had difficulties in capturing the diverse needs of all attendees. The Pain and Symptom Management module was perceived as more technical and clinical, and this suited health professionals with an informed background. The interviewee feedback (three nurses, three nurse educators, one manager) suggested that the learning outcomes were comprehensive but needed to be more sensitive to learner needs. The teaching and learning activities were perceived as useful and encouraging. However, learners came from diverse contexts, and it was difficult to suit all learning preferences. Assessment and evaluation processes required more psychometric attention.

The piloting of the Fundamentals of Palliative Care program at this single site was of benefit and relevance to participants in their clinical practice. Overall, participants felt the course was useful to them and that they were able to gain valuable knowledge and skills. Several areas could be refined to optimize the learning, including: (1) knowing attendee learning potentialities and prior experiences, (2) considering a more inclusive and formal assessment process, (3) creating diverse mechanisms for disseminating knowledge and skills, and (4) improving methods of evaluation.

Intrathecal analgesia and radiofrequency techniques for tumor ablation are employed for palliation of symptoms. These interventions are efficacious in a select number of patients for controlling pain and improving quality of life. Careful selection of an appropriate candidate must be performed to prevent needless, invasive, and costly interventions, as interventional pain management alone will not treat total pain in cancer patients. We describe here a patient who experienced intractable pain and unsuccessfully underwent cordotomy but responded to the interdisciplinary (IDT) palliative care approach in an acute palliative care unit (APCU).

A middle-aged female with ovarian cancer metastatic to the left psoas muscle and the supraclavicular and retroperitoneal lymph nodes was admitted with severe left thigh and flank pain. She had been unsuccessfully treated with different opioid regimens, hypogastric nerve block, epidural steroid injection, and cordotomy. The palliative care team was consulted while awaiting placement of an intrathecal pump. The patient was subsequently transferred to the APCU for symptom management and transition to hospice. On admission, her morphine equivalent daily dose (MEDD) was 660 mg. Our IDT—composed of a physician, fellow, nurse practitioner, counselor, chaplain, social worker, and physical and occupational therapists—was able to identify several sources of distress that likely contributed to her expression of pain. Our IDT focused on frequent counseling, improving her function, provided medication education, discussed goals of care, and educated about hospice. She was discharged to hospice care with good pain control and an 85% reduction in her MEDD.

An APCU approach involving an IDT alleviated the need for invasive interventions by diagnosing and treating the psychosocial, emotional, and spiritual distress contributing to the patient's total pain expression. Successful management must be reflective of rigorous assessment of the physical, psychological, spiritual, social, and practical aspects before consideration of more invasive treatments.

People feeling severely affected by multiple sclerosis (MS) comprise a heterogeneous group, and this heterogeneity leads to very distinct needs and makes planning for needs difficult. To provide optimal care, it is important to identify specific needs in specific subgroups. Our objective was to identify the specific palliative care (PC) needs of patients who felt severely affected by the disease by analyzing their feeling (1) more or (2) less severely affected and their possible differences in expressed care needs.

A self-report questionnaire with 25 needs categories including 7 categories pertaining to care was applied to patients who felt severely affected by MS. An additional single question identified patients feeling more (≥7, median-split) and less (<7) severely affected. Differences were analyzed by chi-squared and Mann–Whitney U tests. The sample (N = 573) was composed of respondents who replied to an invitation by the German Multiple Sclerosis Society to participate in a survey on unmet needs of severely affected patients.

Of 573 patients (median age 51), 358 (62.48%) felt more severely affected. Compared to patients feeling less severely affected, they found the stress on their next of kin to be higher (p < 0.001), were in greater need of home visitation (p < 0.001), did not have permanent neurologists (p = 0.016), and felt that they visited them too rarely (p < 0.0001). They also needed more emotional support from their nursing care service (p = 0.006).

A self-rating scale can identify two groups of patients with different care needs. These data may help shaping patient-centered support structures. Palliative care, with its multidisciplinary approach, might be one further option to meet the specific needs of patients and their relatives.

The objective of our study was to determine the satisfaction levels of family members of patients with advanced-stage cancer.

This descriptive study was conducted in the palliative care and medical oncology clinics of a university hospital in the province of Izmir between April of 2011 and January of 2012. The study sample consisted of a total of 145 family members, who were selected from among the family members of patients with advanced-stage cancer receiving palliative treatment. The study data were obtained using the Patient Description Form and Family Satisfaction Scale during face-to-face interviews with patients.

Some 67% of patients were female and 33% male, 70% were married, 35% were high school graduates, and 34.5% were housewives. The average total family satisfaction score was 76.87 ± 1.14, and the average scores for the component variables were as follows: information giving 74.37 ± 1.28, availability of care 78.40 ± 1.17, physical care 78.99 ± 1.09, and psychosocial care 74.52 ± 1.30. We found a relationship between the level of satisfaction of family members and (1) gender, (2) occupation, (3) presence of someone supporting the care, and (4) possession of sufficient information about the patient (p < 0.05).

Satisfaction levels of participants were determined to be high. We found that family member satisfaction levels were affected by gender and occupation, the existence of someone supporting the care, and possession of sufficient information about the patient.