Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age.

The sample consisted of 125 family caregivers and took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were employed to describe characteristics of the participants and the level of rewards. A Mann–Whitney U test was used to compare differences between groups of different sex and age.

Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women.

Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregiver's ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.

Health care professionals (HCPs) caring for people with primary malignant glioma (PMG) and their carers see many of the profound challenges facing this group, yet their perspectives are not documented. This study aimed to understand and document the unique perspective of HCPs in relation to the supportive and palliative care needs of patients with PMG and their carers, with a view to developing a model of care.

Qualitative study involving semi-structured focus groups and interviews with 35 medical, nursing and allied health staff actively engaged in providing care for this patient group. Purposive and theoretical sampling from two major metropolitan hospitals and one community palliative care service in Australia was utilised to seek perspectives from a variety of disciplines and health care settings. Thematic analysis was conducted by three independent researchers, using a constant comparative method influenced by grounded theory.

Key themes relating to the needs of people with PMG which were apparent from the HCPs included: The difference in the illness course of glioma compared to other cancers; Limitations of current medical care; Challenges in balancing hope with reality of the illness; and Recommendations to improve care, including recognising the role of family and moving from a model where services are offered in response to demonstrated needs.

Current models of care based upon the classic cancer trajectory are unresponsive to the needs of people with PMG. Care may be enhanced by moving towards a proactive approach, extending the goals of care beyond medical needs and broadening the focus of care to include family needs.

This study investigates the usefulness of the Structured Interview for Competency and Incompetency Assessment Testing and Ranking Inventory (SICIATRI) for cancer patients, which is a structured interview that assesses a patient's competency in clinical practice.

The SICIATRI, originally developed to measure patients' competency to give informed consent, were administered referred cancer patients who needed for assessing medical decision making capacity. The usefulness of the SICIATRI was investigated retrospectively. Recommendation for modification of the SICIATRI for cancer patients if applicable were made by the research team.

Among the 433 cancer patients referred for psychiatric consultation, 12 were administered the SICIATRI and all of the administration were conducted without big problems. All patients were 60 years or older. The most common purpose for competency evaluation was to analyze patients' understanding of the anti-cancer treatment proposed by oncologists, followed by their refusal of the treatment. Half of the patients (n = 6) were diagnosed with delirium and three among them were judged as having the most impaired status of a patient's competency. Two patients (17%) were diagnosed with major depression and another two (17%) were mental retardation and each one patient was diagnosed with dementia and past history of alcohol dependence. Among 6 patients without delirium 5 subjects including a dementia patient were judged as fully competent. Total of 5 small potential modifications of the SICIATRI for its use with Japanese cancer patients were recommended.

Our experience suggests that the SICIATRI is a useful instrument for psycho-oncology clinical practice.

Advanced dementia (AD) is a terminal disease. Palliative care is increasingly becoming of critical importance for patients afflicted with AD. The primary objective of this study was to compare pharmacy cost before and after a palliative care consultation (PCC) in patients with end-stage dementia. A secondary objective was to investigate the cost of particular types of medication before and after a PCC.

This was a retrospective study of 60 hospitalized patients with end-stage dementia at a large academic tertiary care hospital from January 1, 2010 to October 1, 2011, in order to investigate pharmacy costs before and after a PCC. In addition to demographics, we carried out a comparison of the average daily pharmacy cost and comparison of the proportion of subjects taking each medication type (cardiac, analgesics, antibiotics, antipsychotics and antiemetics) before and after a PCC.

There was a significant decrease in overall average daily pharmacy cost from before to after a PCC ($31.16 ± 24.71 vs. $20.83 ± 19.56; p < 0.003). There was also a significant difference in the proportion of subjects taking analgesics before and after PCC (55 vs. 73.3%; p < 0.009), with a significant average daily analgesic cost rise from pre- to post-PCC: $1.36 ± 5.07 (median = $0.05) versus. $2.35 ± 5.35 (median = $0.71), respectively, p < 0.011; average daily antiemetics cost showed a moderate increase from pre- to post-PCC: $0.08 ± 0.37 (median = $0) versus $0.23 ± 0.75 (median = $0), respectively, p < 0.047.

Our findings indicate that PCC is associated with overall decreased medication cost in hospitalized AD patients. Additionally, receiving a PCC was related to greater use of pain medications in hospitalized dementia patients. Our study corroborates the benefits of palliative care team intervention in managing elderly hospitalized dementia patients.

Delirium is characterized by disturbances of consciousness and changes in cognition that develop rapidly and fluctuate. It is common in palliative care, affecting up to 88% of patients with advanced cancer, yet often remains insufficiently diagnosed and managed. This study sought to compare rates of screening, documentation, and management of delirium across three palliative care settings — two hospices and one hospital team — and to determine whether definitive documentation of delirium as a diagnosis is associated with improved management of the disorder.

A retrospective review of patient case notes was performed in three U.K. palliative care settings for the presence of: cognitive screening tools on first assessment; the term “delirium” as a stated documented diagnosis; documented terms, descriptions, and synonyms suggestive of delirium; and management plans aimed at addressing delirium.

We reviewed 319 notes. The prevalence of delirium as a documented diagnosis ranged from 0 to 8.4%, rising to 35.7–39.2% when both documented delirium and descriptions suggestive of delirium were taken into account. An abbreviated mental test score (AMTS) was determined for 19.6 (H1) and 26.8% (H2) of hospice admissions and for 0% of hospital assessments. Symptoms suggestive of delirium were managed in 56.3% of cases in hospital, compared with 66.7 (H1) and 72.2% (H2) in hospices.

Use of the term “delirium” was infrequent in both hospital and hospice palliative care settings, as was the use of routine screening. Many identified cases did not receive targeted management. The definitive use of the term as a diagnosis was associated with clearer management plans in hospital patients. The authors suggest that better screening and identification remains the first step in improving delirium management.

Admission of a cancer patient to a palliative unit when near the final stage of their disease trajectory undoubtedly impacts their relatives. The aim of our study was to illuminate and interpret relatives' lived experiences of health personnel's provision of care in a palliative ward.

A phenomenological/hermeneutic approach was employed that was inspired by the philosophical tradition of Heidegger and Ricoeur and further developed by Lindseth and Nordberg. The perspectives of the narrator and the text were interpreted by highlighting relatives' views on a situation in which they have to face existential challenges. The analysis was undertaken in three steps: naïve reading, structural analysis, and comprehensive understanding, including the authors' professional experiences and theoretical background.

Six subthemes appeared: the dying person, the bubble, the sight, the cover, the provision for children's needs, and the availability of immediate help. These components were further constructed into three themes: the meaning of relating, the meaning of action, and the meaning of resources. Our comprehensive understanding of the results suggests that the most important theme is “acting with dedication and expertise.”

The following aspects are crucial for relatives of cancer patients hospitalized in a palliative ward: time and existence, family dynamics, and care adjusted to the situation. Our study results led to reflections on the impact of how nurses behave when providing care to patients during the palliative phase, and how they interact with relatives in this situation. We found that cancer patients in a palliative unit most appreciate nurses who act with dedication and expertise.

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

The purpose of this study was to describe relatives' experience of patient care and the support they themselves received during the course of disease progression.

A total of 15 relatives were included from two neurology clinics in Sweden: 7 wives, 4 husbands, and 4 daughters. Data were collected through qualitative interviews 6 to 12 months after the patient had died. Content analysis was performed to analyze the interviews.

The results showed that patient care was experienced as positive and as being based on the patient's needs and desires. Treatment from the staff, support and help, knowledge, availability, and continuity among the team were important reasons for the relations to feel secure. In addition, support for relatives was available, but different factors influenced its use. Most relatives did not think about their own needs but focused on the patient.

It is important that care and support for both patients and relatives be based on individual needs. The staff members responsible for providing this care and support must have knowledge and experience of the disease and its specific care. If they do not belong to an ALS (amyotrophic lateral sclerosis) team, they may require further education and support. The relatives focus on the patient's situation and do not think of their own needs. It is therefore important that health professionals be observant of the relatives and offer them help and support to better manage their situation.

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.

Teenagers are living through a turbulent period in their development, when they are breaking away from the family to form their own identities, and so they are particularly vulnerable to the stressful situation of having a parent affected by a progessive and incurable illness. The current study sought to gain more knowledge about the ways that teenagers themselves describe living in a family with a seriously ill and dying parent. More specifically, the aims were to describe how teenagers are emotionally affected by everyday life in a family with a dying parent and to determine how they attempt to adapt to this situation.

The study employed a descriptive and interpretive design using qualitative content analysis. A total of 10 teenagers (aged 14–19 years, 7 boys and 3 girls) participated through repeated, individual, informal interviews that were carried out as free-ranging conversations.

While contending with their own vulnerable developmental period of life, the teenagers were greatly affected by their parent's illness and took on great responsibility for supporting their parents and siblings, and for maintaining family life. Lacking sufficient information and support left them rather unprepared, having to guess and to interpret the vague signs of failing health on their own, with feelings of uncertainty and loneliness as a consequence.

Support from healthcare professionals should be designed to help and encourage parents to have open communications about their illness with their teenaged children. Our results add further support to the literature, reinforcing the need for an approach that uses a systemic perspective and considers the family to be the appropriate unit of care and offers a suitable support system.

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.

In this study, we examine whether a pathology clinic, conducted by pathologists, a novel medical tool that provides an explanation for the diagnosis of a cancer, can influence the mental state and adjustment of breast cancer patients.

We created a paper-based questionnaire and interviewed targeted breast cancer patients, who had undergone radical surgery, before and after they visited the clinic.

We found that there may be increased motivation for treatment, a greater sense of reassurance, and reduced anxiety (as indicated by the Hospital Anxiety and Depression Scale (HADS)) in the group that attended the clinic.

Our results suggest that visiting the pathology clinic may reduce anxiety over the short term. On the other hand, Mental Adjustment to Cancer (MAC) Anxious Preoccupation scores were significantly higher in this group as well, both before and after attendance, compared to the group that did not attend. The attending group may have reduced anxiety by such actions as collecting medical data on the cause of their anxiety and adopting healthier behaviors. Our findings suggest that appropriate emotional support and provision of medical information are very important in dealing with patient anxiety.

Most cancer patients experience the time when a doctor must “break the bad news” to them, a time when it is necessary for patients to call upon their self-determination to aid in the battle with cancer. The purpose of our study was to clarify the percentage of times doctors deliver bad news to patients at the end of life in each of four different situations, and to define the most common recipients of this bad news. We compare these results for two timepoints: 2006 and 2012.

The study had a national cross-sectional design consisting of self-completed questionnaires sent to all hospitals that provide cancer care. We mailed them to hospital directors in January and February of 2012, requesting a reply. The results of the same survey in 2006 were employed as a point for comparison.

A total of 1224 questionnaires were returned during 2012. 1499 responses collected in 2006 were employed as reference data. Some hospital characteristics had changed over that interval; however, the new data obtained were representative for patients being treated in Japanese cancer care hospitals. In hospitals with 300–499, there were significant differences between 2006 and 2012 in the providing information about (“disclosure of cancer diagnosis,” “therapeutic options for treatment,” and “a life-prolonging treatment”). In addition, the likelihood of doctors delivering bad news to patients and family members (as opposed to family members only) at the end of life increased from 2006 to 2012.

Our results suggest that the overall incidence of bad news being disclosed has increased, especially in hub medical institutions for cancer care. Advanced treatment options or domestic legislation may have influenced the frequency or type of bad news.

The multidimensional burden that results from providing care to a patient with cancer is well documented and a growing number of psychosocial interventions have been developed to address this burden. None, however, target existential distress, a critical, common element — and potentially driving mechanism — of caregiver burden. Meaning-Centered Psychotherapy (MCP) is a structured psychotherapeutic intervention originally developed by our group to target existential distress and spiritual well-being among patients with advanced cancer. We are currently developing Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C). The objective of this qualitative study is to describe the application of MCP to the unique experience of caregivers of patients with advanced cancer.

A case study of a participant from an initial MCP-C group is presented, with a focus on the application of sources of meaning to the cancer caregiving experience.

The exploration of critical sources of meaning in the participant's life generally, and related to caregiving specifically, highlighted significant areas of growth, including an increased understanding of the historical context shaping her experience of providing care, the recognition of the need for improved self-care and reconnecting with meaningful activities, and the possibility for continued connectedness to others and the world, despite the limitations resulting from her husband's terminal illness.

Existential distress is a critical and often overlooked element of burden among cancer caregivers. MCP-C is intended to target this component of burden and address this critical gap in the palliative care literature. Clinical trials are underway to evaluate the efficacy of MCP-C delivered over the Internet. Future studies are needed to evaluate the benefits of MCP-C for particularly burdened groups of caregivers, such as caregivers of patients with brain tumors and those undergoing hematopoietic stem cell transplantations, and to identify target points of delivery that will optimize the intervention's benefits.

Hope, despair, and hopelessness are dynamic in nature; however, they have not been explored over time. The objective of the present study was to describe hope, hopelessness, and despair over time, as experienced by palliative care patients.

We employed a qualitative longitudinal method based on narrative theories. Semistructured interviews with palliative care patients were prospectively conducted, recorded, and transcribed. Data on hope, hopelessness and despair were thematically analyzed, which led to similarities and differences between these concepts. The concepts were then analyzed over time in each case. During all stages, the researchers took a reflexive stance, wrote memos, and did member checking with participants.

A total of 29 palliative care patients (mean age, 65.9 years; standard deviation, 14.7; 14 females) were included, 11 of whom suffered from incurable cancer, 10 from severe chronic obstructive pulmonary disease, and 8 from severe heart failure. They were interviewed a maximum of three times. Participants associated hope with gains in the past or future, such as physical improvement or spending time with significant others. They associated hopelessness with past losses, like loss of health, income, or significant others, and despair with future losses, which included the possibility of losing the future itself. Over time, the nature of their hope, hopelessness, and despair changed when their condition changed. These dynamics could be understood as voices in a singing choir that can sing together, alternate with each other, or sing their own melody.

Our findings offer insight into hope, hopelessness, and despair over time, and the metaphor of a choir helps to understand the coexistence of these concepts. The findings also help healthcare professionals to address hope, hopelessness, and despair during encounters with patients, which is particularly important when the patients' physical condition has changed.

Quality end-of-life care requires effective communication skills, yet medical and nursing students report limited opportunities to develop these skills, and that they lack confidence and the related competence.

Our purpose was to design, implement, and evaluate an educational intervention employing simulated patient actors to enhance students' abilities to communicate with dying patients and their families.

A study employing a mixed-methods design was conducted with prequalification nursing and medical students recruited from a London university. The first phase involved focus groups with students, which informed the development of an educational intervention involving simulated patient actors. Questionnaires measuring students' perceptions of confidence and competence levels when communicating with dying patients and their families were administered before and after the intervention.

The themes from focus groups related to responding to grief and anger, difficulties dealing with emotions, knowing the “right thing” to say, and a lack of experience. A significant increase (p < 0.5) in competence and confidence from baseline levels followed participation in the simulated scenarios.

Simulation was found to be an effective means of preparing students to communicate with dying patients and their families. The opportunity to develop communication skills was valued. Integration of educational interventions employing simulated patient actors into nursing and medical curricula may assist in improving the care provided to patients at the end of life.

Women with gynecological cancer have been reported as very high users of complementary medicine. The goal of our study was to explore the perceptions of patients with an advanced gynecological cancer who use naturopathy as complementary medicine. We were looking more specifically at patients' opinions on the effect of naturopathy on their quality of life and its relation to conventional oncological treatments.

This pilot qualitative study used semistructured interviews, and data were analyzed using grounded theory and qualitative methods. The main criterion for inclusion in the study was the use of naturopathy as a treatment complementary to conventional cancer treatment for gynecological metastatic cancer on the oncology day care unit.

Six patients were included until data saturation. They express the physical and psychological impact of treatments and disease. Usually, chemotherapy is perceived as something that may be curative or may at least lead to remission. Unlike conventional treatments, naturopathy is not perceived as drugs, and it is seen as a way to relieve symptoms, improve well-being, and as a way of enabling them to take an active decision-making role in their care journey. Patients want to have more information about naturopathy.

This study suggests that patients are aware of the benefits of a specific cancer treatment as chemotherapy, but they resort to naturopathy for symptom control, and also to take a more active role during treatment.

Advance care planning (ACP) discussions are emphasized as a valuable way of improving communication about end-of-life care. Yet we have very little knowledge of what goes on during actual ACP discussions. The aim of our study was to explore how the sensitive topics of end-of-life decisions are addressed in concrete ACP discussions, with special focus on doctor–patient interactions.

Following a discourse-analysis approach, the study uses the concept of doctor and patient “voices” to analyze 10 directly observed and audiotaped ACP discussions among patients, relatives, and a physician, carried out in connection with a pilot study conducted in Denmark.

Previous studies of directly observed patient–physician discussions about end-of-life care show largely ineffective communication, where end-of-life issues are toned down by healthcare professionals, who also tend to dominate the discussions. In contrast, the observed ACP discussions in our study were successful in terms of addressing such sensitive issues as resuscitation and life-prolonging treatment. Our analysis shows that patients and relatives were encouraged to take the stage, to reflect, and to make informed choices. Patients actively explored different topics and asked questions about their current situation, but some also challenged the concept of ACP, especially the thought of being able to take control of end-of-life issues in advance.

Our analysis indicates that during discussions about sensitive end-of-life issues the healthcare professional will be able to pose and explore sensitive ACP questions in a straightforward manner, if the voices that express empathy and seek to empower the patient in different ways are emphasized.

This study aimed to describe knowledge of an advance directive (AD) and preferences regarding end-of-life (EoL) care communication, decision making, and designation of surrogates in Chinese-American elders and to examine the role of acculturation variables in AD awareness.

Survey data were collected through face-to-face interviews on a sample of 385 Chinese-American elders aged 55 or above living in the Phoenix metropolitan area. The choice of language (Mandarin, Cantonese, or English) and place of interview (senior apartments, Chinese senior centers, or homes) was at the respondent's preference. Hierarchical logistic regression analysis was employed to examine the influence of acculturation variables on AD awareness.

Some 21% of participants had heard about ADs, and only 10% had completed one. Elders with higher acculturation levels (OR = 1.04, p < 0.10) and those residing more than 20 years in the United States (OR = 6.87, p < 0.01) were more likely to be aware of ADs after controlling for the effects of demographics, health, and experiences of EoL care. The majority preferred physicians to initiate AD discussions (84.9%) and identified burdens on families as the most important factor in making EoL decisions (89.3%). About 55.1 % considered daughters as the preferred healthcare surrogate.

Acculturation levels influence awareness of an AD, and family values are crucial in EoL care decision making. Cultural factors should be considered in designing and delivering appropriate programs to promote knowledge of EoL care among Chinese-American elders and their families.

Multiple sclerosis (MS) patients' caregivers are sometimes considered as “hidden patients.” How much more this might be true for caregivers of severely affected MS patients has so far been scarcely studied. Palliative care also addressing relatives' needs might therefore be very relevant for these caregivers. However, we do not yet know which unmet needs they have and how these could be met. Our aim was to gain an insight into the subjectively unmet needs of caregivers of severely affected MS patients in Germany.

The study employed a qualitative cross-sectional approach for assessing unmet needs. Twelve caregivers of severely affected MS patients were recruited using a convenience sampling approach. Face-to-face interviews were conducted, audiotaped, and transcribed verbatim, followed by qualitative content analysis.

Unmet needs were sorted into the following categories: “relationship to physician,” “individual support by the healthcare system,” “relationship to the individual severely affected by MS,” “end-of-life issues,” “self-care,” and “higher awareness of MS.” Caregivers tended to group the unmet needs of their care recipients with their own and rarely focused on their own wishes and restrictions.

A close patient–caregiver dyad makes it difficult to differentiate unmet caregiver needs. However, the palliative care approach might help caregivers of severely affected MS patients by answering questions on disease progress and end-of-life issues, as well as by offering respite care, support for self-care, and help in preserving one's identity, and also anticipating the time to come after the death.