Motor Neurone Disease (MND) is a rare, devastating neurodegenerative disease of middle/later life, usually presenting in the sixth and seventh decades (McDermot & Shaw, 2008). People have to wait many months to receive a diagnosis of MND (Donaghy et al., 2008), and during this period they have already experienced the degenerative nature that characterizes MND (Bolmsjö, 2001). However, information on the meaning of life with MND through time is limited. The aim of the present research was to answer the research question “What does it mean to be a person living through the illness trajectory of MND?” and to research the phenomenon of existence when given a diagnosis of MND and in the context of receiving healthcare.

Hermeneutic phenomenology, inspired by the philosophers Heidegger and Gadamer, informed the methodological approach employed, which asked people to tell their story from when they first thought something untoward was happening to them. The hermeneutic analysis involved a five-stage process in order to understand (interpret) the lifeworld1 of four people diagnosed with MND, and a lifeworld perspective helped to make sense of the meaning of existence when given a terminal diagnosis of MND.

The concept of “existential loss” identified in relation to MND was the loss of past ways of being-in-the-world, and the loss of embodiment, spatiality, and the future.

The concept of existential loss requires closer attention by healthcare professionals from the time of diagnosis and on through the illness trajectory. The study findings are conceptualized into a framework, which when used as a clinical tool may prompt healthcare professionals to focus on their patients' existential loss and existential concerns. This research adds to the existing literature calling for a lifeworld approach to healthcare.

Social work is considered to be a key player in Hospice and Palliative Care. To prove this claim, the Social Worker Task Force within the European Association for Palliative Care (EAPC) decided to carry out a survey. The aim of this survey was to generate basic data and thus to create a basis for further development of Palliative Care Social Work (PCSW) in Europe.

The online survey consisted of two parts: in Part 1, the 57 collective members of the EAPC were asked to fill in an online questionnaire containing questions about basic data. In Part 2, individual Palliative Care Social Workers (SWs) from all over Europe were asked to fill in another questionnaire with a focus on the basic conditions concerning their jobs as well, as on their tasks and roles.

Thirty-two collective members of the EAPC completed the online questionnaire. SWs can be found in all of the Palliative Care settings, but there are considerable differences between the countries concerning the prevalence of SWs. Only five countries (20%) reported specialized qualification training in PCSW and just around half of the responding SWs had such a specialized training. The responding SWs (n = 360) were quite content with their working conditions. Tasks concerning patient and family and tasks concerning the interprofessional team were most prominent. There is a significant role overlap with other professions.

The study reveals a very mixed picture of PCSW in Europe. This could be due to the high adaptability of social work, which is to be as flexible as possible to the needs of its clients. However, significant patterns, similarities, and differences emerge. The present study may, therefore, serve as a basis for further in-depth studies.

As medical education evolves, emphasis on chronic care management within the medical curriculum becomes essential. Because of the consistent lack of appropriate end-of-life care training, far too many patients die without the benefits of hospice care. This study explores the association between physician knowledge, training status, and level of comfort with hospice care referral of terminally ill patients.

In 2011, anonymous surveys were distributed to physicians in postgraduate years 1, 2, and 3; fellows; hospital attending physicians; specialists; and other healthcare professionals in five hospitals of a large health system in New York. Demographic comparisons were performed using χ2 and Fisher's exact tests. Spearman correlations were calculated to determine if professional status and experience were associated with comfort and knowledge discussing end-of-life topics with terminal patients.

The sample consisted of 280 participants (46.7% response rate). Almost a quarter (22%) did not know key hospice referral criteria. Although 88% of respondents felt that knowledge of hospice care is an important competence, 53.2% still relinquished advance directives discussion to emergency room (ER) physicians. Fear of patient/family anger was the most frequently reported hospice referral barrier, although 96% of physicians rarely experienced reprisals. Physician comfort level discussing end-of-life issues and hospice referral was significantly associated with the number of years practicing medicine and professional status.

Physicians continue to relinquish end-of-life care to ER staff and palliative care consultants. Exploring unfounded and preconceived fears associated with hospice referral needs to be integrated into the curriculum, to prepare future generations of physicians. Medical education should focus on delivering the right amount of end-of-life care training, at the right time, within the medical school and residency curriculum.

Much of the cancer rehabilitation research that has been conducted has consisted of relatively early recovery-of-function rehabilitation, and little attention has been paid to the psychosocial aspects of palliative rehabilitation. The aim of the present preliminary study was to examine the “narratives” of elderly cancer patients that emerged as a result of a life review performed in association with collage activity and to assess the effectiveness of this intervention.

We conducted a collage activity based on a life review in two sessions. Some 11 cancer patients who were 65 years of age or older and receiving palliative care participated. Evaluations using the Functional Assessment of Chronic Illness Therapy–Spiritual (FACIT–Sp) Scale, the Hospital Anxiety and Depression Scale (HADS), and the Self-Efficacy Scale for Terminal Cancer (SESTC) were administered before and immediately after the intervention.

The mean scores for the FACIT–Sp and affect regulation efficacy on the SESTC significantly increased, while the mean HADS score significantly decreased. Regarding the impressions after completion of the intervention, generally favorable evaluations were heard from families and medical staff members as well as from the subjects.

A collage activity based on a life review may be effective for improving spiritual well-being, mitigating anxiety and depression, and improving self-efficacy. The collage itself was also useful in facilitating interactions with others, including family members, and the activity provided psychological support for families.

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.

The experience of hope among cancer patients in palliative care is important information for healthcare providers, but research on the subject is sparse. The aim of this article was to explore how cancer patients admitted to palliative home care experienced the significance of hope and used hope during 6 weeks throughout the last phase of their life, and to assess their symptoms and hope status during 6 weeks throughout the last phase of their lives.

Eleven adult patients with cancer participated in 20 interviews and completed seven diaries. The participants were recruited from two palliative care units in the southeast of Sweden. The method used was Grounded Theory (GT), and analysis was based on the constant comparative method.

The core category, glimmering embers, was generated from four processes: (1) The creation of “convinced” hope, with a focus on positive events, formed in order to have something to look forward to; (2) The creation of “simulated hope,” including awareness of the lack of realism, but including attempts to believe in unrealistic reasons for hope; (3) The collection of and maintaining of moments of hope, expressing a wish to “seize the day” and hold on to moments of joy and pleasure; and (4) “Gradually extinct” hope, characterized by a lack of energy and a sense of time running out.

The different processes of hope helped the patients to continue to live when they were close to death. Hope should be respected and understood by the professionals giving them support.

The notion of spirituality/religious belief is recognized internationally as a domain within end-of-life care and is important in patients' and carers' quality-of-life. When faced with incurable illness, patients often become more philosophical about their life; many seek comfort in spiritual or religious philosophies. Our intention was to understand how personal spirituality and religious faith might help those living with amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) cope with their impending death.

Unsolicited narratives (internet and print-published) written by individuals diagnosed with the terminal condition of ALS/MND were analyzed thematically. Narratives from 161 individuals diagnosed with ALS/MND written over a period of 37 years (from 1968 to 2005) were included.

Our findings reveal that religious faith sustains and helps people to avoid despair, and personal spirituality helps them make sense of what is happening to them.

The use of personal narratives by people with ALS/MND has provided a vehicle for sharing their deepest spiritual and religious thoughts with others. The place of spirituality and religious faith within ALS/MND care should not be underestimated. Assessment of religious or spiritual needs should become a routine part of practice and is the responsibility of all members of the multidisciplinary team.

This qualitative research study listens to the narratives of people experiencing the dying process who attended the Otago Community Hospice, Dunedin, New Zealand.

Ten people, aged between 51 and 65, were approached; two declined and one died sooner than expected. All were women (although this was not part of the original design) and all had carcinoma. Data for the study was sought through qualitative research interviews, considering the development of each participant's illness in relation to her perception of her embodiment in the palliative care setting, and concluding with questions about what she wants the people who care for and about her to learn from her experience. Consistent with this phenomenological approach, the method of analysis was thematic and interpretive.

The main theme was the uncertainty that all participants felt throughout the diagnostic process and during treatment. Uncertainty, too, was a factor in how they managed their day, whether they would be able to sustain an outing or an activity or not and whether they would be pain free. None were afraid of dying but hoped that when they did die, they would do so comfortably. The relationship with their general practitioners varied. Where fatigue or the effects of medication were not an issue, they could think clearly, but their bodies were experienced as letting them down and limiting their activities. The ideal of “living until you die” was not able to be fulfilled. The increasing approach of social death as they withdrew from their employment and social responsibilities affected them.

Whether one has a “good death” or not is determined not only by the progression and management of the disease process by health professionals, but also by the way in which one is perceived, by self and others. There are no guidelines for the dying role; everybody dies differently and individually.

Despite its established benefits, palliative care (PC) is not well known among patients and family/caregivers. From a nationally representative survey, we sought to assess the following associated with PC: knowledge, knowledge sources, and beliefs.

Data were drawn from the Health Information National Trends Study (HINTS 5 Cycle 2), a cross-sectional, survey of non-institutionalized adults aged 18+ years in the USA. Data were weighted and assessed by proportional comparison and multivariable logistic regression.

A total of 3504 respondents were identified, and approximately 29% knew about PC. In the adjusted model, less PC knowledge was associated with: lower age (those aged <50), male gender, lower education (<high school graduation or high school graduate), and non-internet users. A little over half (55%) of respondents accessed healthcare providers first for PC information, and 80% considered providers the most trusted source of PC information. Most of the participants strongly/somewhat agreed that the goal of PC is to help friends and family cope with a patient's illness (90.6%), offer social and emotional support (93.4%), and manage pain and other physical symptoms (95.1%). Similarly, a majority (83.3%) strongly/somewhat agreed that it is a doctor's obligation to inform all patients with cancer about the option of PC.

PC knowledge was generally low (1-in-3 respondents knew of PC), with significant differences according to age, gender, education, and internet use. These data provide a baseline from which PC education policies and interventions may be measured.

The objective of this conceptual paper was to present important constructs in attachment theory as they apply to parent and caregiver behavior in pediatric palliative care. Clarification of these constructs is provided with specific reference to their clinical application as well as their reflection in current empirical literature. Social attachment theory is proposed as a developmentally contextual model for the study of parenting in pediatric palliative and end-of-life care.

A comprehensive search was conducted of pertinent literatures. These included classic as well as recent theory and research in attachment theory in addition to the empirical literatures on parent and family experience in pediatric palliative care, serious illness, and beyond to parental bereavement. Other relevant literature was examined with respect to the phenomena of concern.

The empirical literature in pediatric palliative care supports the use of central concepts in attachment theory as foundational for further inquiry. This is evidenced in the emphasis on the importance of parental protection of the child, as well as executive activities such as decision making and other prominent parental operations, parental psychological resolution of the child's diagnosis and illness as well as coping and meaning making, and the core significance of parental relationships with providers who provide secure-base and safe-haven functions.

The promise for developing integrated, conceptually based interventions from construction through implementation is of urgent importance to children and families receiving pediatric palliative care services. Focusing on key parental behaviors and processes within the context of a well-studied and contextually appropriate model will inform this task efficiently. The attachment paradigm meets these criteria and has promise in allowing us to move forward in developing well-defined, inclusive, and conceptually grounded protocols for child and family psychosocial research, practice, and education in this specialty

There is a shortage of social workers who have palliative care expertise. The aging U.S. population and advances in extending life for seriously ill persons require social workers in a wide range of health care and other settings with specialized palliative care expertise, as well as those with basic competence in palliative care. The objective of the present study was to document course content on palliative care in MSW programs in the United States and Canada.

A cross-sectional design with an online questionnaire was used. All 248 accredited MSW programs in the United States and 32 programs in Canada were invited to participate. The measures included the characteristics of the courses on palliative care.

Of the 105 participating programs, only 10 had courses dedicated to palliative care, 9 of which were part of a specialization/certificate program. Few programs had plans to develop a dedicated course. There were 106 courses in 63 MSW programs with some content on palliative care. The majority of these had <25%, and few had at least 50%, of palliative care content.

Curricula are needed for preparing MSW graduates for specialty hospice and palliative care practice and non-specialty practice. While there are practice competencies for specialty practitioners, consensus on a core curriculum for all MSW students would be beneficial. Consensus on basic palliative care knowledge and skills for non-specialty social workers in health care and other settings and subsequent curriculum development are also needed. Innovative ways in which to introduce basic and more specialized content on palliative care into the already-crowded MSW curricula will be needed.

This study identified the predictors of incident loneliness in a group of seriously ill older adults (aged 65+) receiving home care.

Existing data collected with the Resident Assessment Instrument for Home Care (RAI–HC) were utilized. A cohort of clients (N = 2,499) with two RAI–HC assessments and no self-reported loneliness at time 1 were included. Self-reported loneliness, upon reassessment, was the outcome of interest. Clients with a prognosis of less than six months or severe health instability were included.

The average length of time between assessments was 5.9 months (standard deviation = 4.10). During that time, 7.8% (n = 181) of the sample developed loneliness. In a multivariate regression model, worsening symptoms of depression, a decline in social activities, and not living with a primary caregiver all increased the risk of loneliness.

These results highlight how changes in psychosocial factors over time can contribute to loneliness, which can inform clinicians as they seek to identify those who may be at risk for loneliness.

Although growing numbers of family members provide end-of-life care for dying persons, caregivers frequently report lacking essential information, knowledge, and skills. This analysis explicates what family members learn during the process of providing end-of-life care.

Four qualitative interview studies of family caregivers to those at the end of life (n = 156) formed the basis of a secondary data analysis.

Thematic and cross-comparative analyses found three general kinds of learning that were described—knowledge about: (1) the situation and the illness (including what to expect), (2) how to provide care, and (3) how to access help. Learning gaps, preferences, and potential inequities were identified. Further, in some instances, participant talk about “learning” appears to reflect a meaning-making process that helps them accept their situation, as suggested by the phrase “I have had to learn.”

Findings can inform the development of individualized educational programs and interventions for family caregivers.

Delirium is a frequent complication in advanced cancer patients, among whom it is frequently underdiagnosed and inadequately treated. To date, evidence on risk factors and the prognostic impact of delirium on outcomes remains sparse in this patient population.

In this prospective observational cohort study at a single tertiary-care center, 1,350 cancer patients were enrolled. Simple and multiple logistic regression models were utilized to identify associations between predisposing and precipitating factors and delirium. Cox proportional-hazards models were used to estimate the effect of delirium on death rate.

In our patient cohort, the prevalence of delirium was 34.3%. Delirium was associated inter alia with prolonged hospitalization, a doubling of care requirements, increased healthcare costs, increased need for institutionalization (OR 3.22), and increased mortality (OR 8.78). Predisposing factors for delirium were impaired activity (OR 10.82), frailty (OR 4.75); hearing (OR 2.23) and visual impairment (OR 1.89), chronic pneumonitis (OR 2.62), hypertension (OR 1.46), and renal insufficiency (OR 1.82). Precipitating factors were acute renal failure (OR 7.50), pressure sores (OR 3.78), pain (OR 2.86), and cystitis (OR 1.32). On multivariate Cox regression, delirium increased the mortality risk sixfold (HR 5.66). Age ≥ 65 years and comorbidities further doubled the mortality risk of delirious patients (HR 1.77; HR 2.05).

Delirium is common in cancer patients and associated with increased morbidity and mortality. Systematically categorizing predisposing and precipitating factors might yield new strategies for preventing and managing delirium in cancer patients.

Disparities in breast cancer survival and treatment for African American and low income women are well documented, yet poorly understood. As care for women with metastatic breast cancer (MBC) evolves to a chronic care model, any inequities in optimal treatment and management of symptoms must also be identified and eliminated. The purpose of this study was to explore how race and income status influence women's experiences with MBC, particularly the management of symptoms, by describing the perceived challenges and barriers to achieving optimal symptom management among women with MBC and exploring whether the perceived challenges and barriers differed according to race or income.

Quantitative techniques were used to assess demographics, clinical characteristics, symptom distress, and quality of life and to classify women into groups according to race and income. Qualitative techniques were used to explore the perceived challenges, barriers, and potential influences of race and income on management of symptoms in a prospective sample of 48 women with MBC.

Commonalities of themes across all groups were faith, hope, and progressive loss. Low-income African American women uniquely experienced greater physical and social distress and more uncertainty about treatment and treatment goals than the other delineated racial and economic groups.

There are many commonalities to the challenges of illness presented to women with MBC. There are also interesting, emerging thematic racial and economic differences, most compelling among the low income African American women with resultant practice and research implications.

Research on women's experiences of cervical cancer as a health problem focuses primarily on cervical screening, while their experiences of cervical cancer as a disease seem to be underresearched. This study addresses this understudied area and aims to yield insight into the experiences of underprivileged women confronted with this disease.

Our study was qualitative, exploratory, and contextual with descriptive and interpretive elements. The context of the study was a radiation oncology department at an academic hospital in the Gauteng Province of South Africa. The target population was all patients diagnosed with cervical cancer referred for treatment at the specific hospital. Convenience sampling selected participants typical of the population. Nineteen open-ended unstructured interviews were conducted after demographic data were collected. One question was posed: “Please tell me what made you think there was something wrong with you?” Thematic analyses were used to analyze the data.

The average age of participants was 47.2 years, with a youngest participant of 29 and oldest of 70. Three themes arose from the data: experiencing the symptoms of cervical cancer, hearing the bad news, and what remained unsaid.

Being confronted with cervical cancer is a traumatic experience. Women suffer unexplained, severe, humiliating vaginal bleeding and unrelieved pain. They have to face a dual healthcare system: on the one hand, unaffordable effective private healthcare and, on the other, the free-of-cost public healthcare that failed them. The bad news of their cervical cancer is most commonly broken in a kind and sympathetic manner, yet misunderstandings and a need for additional information prevail after the bad news conversation. Having to inform their families of their cancer adds to their suffering.