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

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

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

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

The objective of this research was to explore how spirituality is currently understood and taught in New Zealand Medical Schools.

A mixed methods study was carried out involving interviews (n = 14) and a survey (n = 73). The first stage of the study involved recorded semi-structured interviews of people involved in curriculum development from the Dunedin School of Medicine (n = 14); which then informed a cross-sectional self-reported electronic survey (n = 73).

The results indicate that spirituality is regarded by many involved in medical education in New Zealand as an important part of healthcare that may be taught in medical schools, but also that there is little consensus among this group as to what the topic is about.

These findings provide a basis for further discussion about including spirituality in medical curricula, and in particular indicate a need to develop a shared understanding of what ‘spirituality’ means and how it can be taught appropriately. As a highly secular country, these New Zealand findings are significant for medical education in other secular Western countries. Addressing spirituality with patients has been shown to positively impact a range of health outcomes, but how spirituality is taught in medical schools is still developing across the globe.

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.

Most patients prefer to die at home, but barely 30% do so. This study examines the variables contributing to dying at home.

The participants were 326 cancer patients, of both genders, with a mean age of 63.25 years, who died from 2000 to 2008 and were treated by the palliative care unit of the Barzilai Hospital. Some 65.7% died at home and 33.4% in a hospital. The data were extracted from patient files. The examined variables were demographic (e.g., age, gender, marital status, ethnic background, number of years in Israel until death), medical (e.g., age at diagnosis, diagnosis, nature of last treatment, patient received nursing care, patient given the care of a social worker, patient had care of a psychologist, family received care of a social worker, patient had a special caregiver), and sociological (e.g., having insurance, having worked in Israel, living alone or with family, living with one's children, living in self-owned or rented house, family members working).

The findings indicate that the chances of dying at home are higher if the patient is non-Ashkenazi, the family got social worker care, the patient lived in a self-owned house, the patient lived with his family, the family members worked, and the patient's stay in Israel since immigration was longer. Logistic regression showed that all the predictors together yielded a significant model accounting for 10.9–12.3% of the variance.

The findings suggest that dying at home requires maintaining continued care for the patient and family in a community context.

Medical practitioners conceptualize depression in different ways, which adds to the challenges of its diagnosis and treatment, as well as research in the palliative care setting. Psychiatric assessment is often considered the “gold standard” for diagnosis, therefore how psychiatrists conceptualize depression in this setting is pertinent. Our study aimed to investigate this issue.

Psychiatrists working in palliative care in Australia were individually interviewed using a semistructured approach. Nine participants were interviewed to reach data saturation. Interview transcripts were analyzed for themes.

Three overarching themes were identified: (1) depression means different things; (2) depression is conceptualized using different models; and (3) depression is the same concept within and outside of the palliative care setting. Participants explicitly articulated the heterogeneous nature of depression and described a different breadths of concepts, ranging from a narrow construct of a depressive illness to a broader one that encompassed depressive symptoms and emotions. However, depressive illness was a consistent concept, and participants considered this in terms of phenotypic subtypes. Participants used three models (spectral, dichotomous, and mixed) to relate various depressive presentations.

Psychiatrists did not subscribe to a unitary model of depression but understood it as a heterogeneous concept comprised of depressive illness and other less clearly defined depressive presentations. Given the influence of psychiatric opinion in the area of depression, these findings may serve as a platform for further discussions to refine the concepts of depression in the palliative care setting, which in turn may improve diagnostic and treatment outcomes.

Control over place of death is deemed important, not only in providing a “good death,” but also in offering person-centered palliative care. Despite the wish to die at home being endorsed by many, few achieve it. The present study aimed to explore the reasons why this wish is not fulfilled by examining the stories of ten individuals who lost a loved one to cancer.

We adopted a narrative approach, with stories synthesized to create one metastory depicting plot similarities and differences.

Stories were divided into four chapters: (1) the cancer diagnosis, (2) the terminal stage and advancement of death, (3) death itself, and (4) reflections on the whole experience. Additionally, several reasons for cessation of home care were uncovered, including the need to consider children's welfare, exhaustion, and admission of the loved one by professionals due to a medical emergency. Some participants described adverse effects as a result of being unable to continue to support their loved one's wish to remain at home.

Reflections upon the accounts are provided with a discussion around potential clinical implications.

The Family Evaluation of Hospice Care (FEHC) survey is widely employed by hospices, and several studies have examined this information to help inform and enhance end-of-life services. However, these studies have largely focused on examining relatively straightforward associations between variables and have not tested larger models that could reveal more complex effects. The present study aimed to examine the direct and mediating (i.e., via information/education, patient care, and family support) effects of demographic factors, length of stay, timing of referral, patient symptom severity, location of services, and relationship to caregiver on two outcome variables: overall satisfaction and caregiver confidence.

Surveys were collected from 3226 participants who had lost a loved one who received hospice services. Structural equation modeling was employed to examine the direct and mediating effects of the independent variables on the two outcomes of interest.

Participants reporting on racial minority patients, patients with more symptoms, and those referred too late or too early were the most likely to express some discontentment with hospice services. The information/education these individuals received was the only mediating factor significantly associated with caregiver confidence. More positive perceptions of patient care and information/education were both significantly related to greater overall satisfaction.

These findings help to (1) pinpoint those most at risk for being less satisfied with hospice, (2) identify which aspects of care may be most strongly related to overall outcomes, and (3) provide a model for examining complex associations among FEHC variables that may be employed by other researchers.

Food and eating are embedded in people's everyday social lives: at home with family members and as part of social interactions. For people with progressive life-limiting conditions, however, eating is often obstructed. The objective of the present study was to explore the meanings of living with eating deficiencies at the end of life among people admitted to specialist palliative home care.

This qualitative inductive study employed an interpretive descriptive approach. A dozen persons, with various diagnoses and eating deficiencies, admitted to two specialist palliative home care units, participated. Data were collected through individual repeated interviews. Data collection and analysis were guided by the interpretive description method.

The results reveal that eating deficiencies among people with progressive life-limiting conditions are existentially loaded markers of impending death. Finding ways to overcome declined food intake and hampered eating enabled our participants to feel able to influence their own well-being and remain hopeful. The results also showed that the eating deficiencies influenced participants' relationships and social interactions in ways that hampered their possibilities of sharing valuable moments together with friends and family members during the final period of life.

Efforts to minimize the distress that people experience in relation to the challenges they face with eating deficiencies are important for well-being at the end of life. Person-centered approaches to acknowledge and support individuals' own ways of experiencing and dealing with their eating deficiencies are recommended that include a multidimensional perspective on food and eating.

The goals of this study were to investigate the changes experienced by bereaved family members in Japan and to determine what activities they would value in the future based on narratives from a bereavement life review, which is a type of psychotherapy used to treat depression and promote spiritual well-being.

The participants were 20 bereaved Japanese family members who underwent two sessions of bereavement life review over a period of two weeks.

Using qualitative analysis, we identified four areas of changes (“learning from the deceased's death and self-growth,” “healing process,” “relating with others,” “relating with society,” and “performing new family roles”) and five categories of valued activities (“continuing grief work,” “living with a philosophy,” “attaining life roles,” “keeping good human relationships,” and “enjoying life”).

“Learning from the deceased's death and self-growth” and “relating with others” are common in Japan and Western countries, whereas “relating with society,” “healing process,” and “performing new family roles” are more characteristic of Japan. The strength of bonding with the deceased may influence the values of bereaved family members. We concluded that bereavement life review therapy can contribute positively to their grief work.

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.

Subjective reports on the effectiveness of and satisfaction with writing interventions in medical populations have indicated that they can have a profound impact on patients. Further, past research on these programs has demonstrated that they can lead to a number of different positive outcomes depending on the personal characteristics of the participating patients and the type of writing with which they are tasked. For this reason, a flexible and individually tailored writing intervention may be particularly effective for patients, molding its approach to their desires and backgrounds. This paper examines Visible Ink, a writing program for cancer patients at Memorial Sloan-Kettering Cancer Center (MSKCC) that follows this model.

At Visible Ink's First Fall Writing Festival in November 2012, an optional survey was provided to all program participants in attendance, capturing both quantitative and qualitative information on patient experiences in the program. Twenty-nine surveys were completed.

The program appears to have a variety of positive effects, including fostering personal growth and providing a positive distraction. Respondents reported that they write in a number of different genres on topics both related and not related to their illnesses, which supports the flexible model of the program. All respondents indicated that they would recommend the program to others, and satisfaction with the program's general approach (i.e., individualized work with a writing coach) was unanimous. A few areas for potential improvement were also identified, most of which involved expanding the services and events offered by the program.

Despite the limitations of this survey (e.g., small sample size and low response rate), its results support the promise of the Visible Ink model and demonstrate participants' satisfaction with the program. Future research can more thoroughly examine Visible Ink's effectiveness, and additional resources could enable the program to expand.

Caregivers of cancer patients are faced with significant demands that can seriously impact their physical and mental health. It is important for healthcare professionals to be aware of caregivers' support needs in order for these to be adequately addressed. Our study develops a German version of the Family Inventory of Needs (FIN) and provides a comprehensive evaluation of its acceptability and psychometric properties.

Cross-sectional data from 308 participants were taken from the baseline assessment of an ongoing prospective study. Retests were completed by 46 participants approximately one week after baseline. Informal caregivers of terminally ill cancer patients were recruited from three hospitals in Vienna. Questionnaires for hope (IHS), traumatic stress (IES–R), and depression and anxiety (HADS) were employed together with the translated FIN to assess concurrent and discriminant validity.

The internal consistency of FIN–Importance had a Cronbach's α of 0.94, and that for FIN–Fulfillment was α = 0.96. Retest reliability for FIN–Importance was r = 0.97, while that for FIN–Fulfillment could not be calculated due to missing responses to this subscale. Concurrent and discriminant validity tests for the scale and the discriminative power of items were adequate. However, missing responses may limit the feasibility of using this scale in research settings. We identified six questions that could be excluded from the scale in order to increase its acceptability and further improve its psychometric properties.

Our results suggest that the FIN is suitable for clinical settings. For use in research, we suggest four adaptations to increase the scale's acceptability and psychometric properties. The FIN can be a valuable tool for informing the emotional, physical, and psychological support provided to family carers of people who are terminally ill with cancer.

The aim of this study was to illuminate experiences of finding meaning in life among spouses of people with amyotrophic lateral sclerosis.

Thirteen interviews were analyzed with qualitative content analysis.

The spouses were struggling for meaning at the end of a dark tunnel. They felt limited and isolated in their proximity to death. They lived imprisoned lives, felt lonely, considered life to be unfair and incomplete, and mourned the loss of their future. However, they found meaning despite the proximity of death through cherishing their own lives, fellowship, accepting the present, and believing in meaning after the partner's death.

Meaning in life strengthened spouses' well-being and ability to find pleasure in a difficult situation. It also strengthened their will to live after the partner's death. Limitations and isolations were strong predictors of what could impair their well-being and the possibility of finding meaning after the partner's death. Spouses need individual support throughout the disease process and after the partner's death, to give them the strength to find meaning in life and prioritize what is important for them. Paying attention to what might prevent them from finding meaning could make it easier to help them in their situation. Providing joint support to the patient and spouse might also help them to see each other's situation, come together, and help each other.

We replicated a 1994 study that surveyed the state of supportive care services due to changes in the field and the increased need for such services. We provide an updated assessment, comparing the changes that have occurred and describing the current status of supportive care services in comprehensive cancer settings.

We used Coluzzi and colleague's 60-question survey from their 1995 Journal of Clinical Oncology article to frame the 98-question survey employed in the current study. Medical and palliative care directors for the 2011 National Cancer Institute (NCI) comprehensive cancer centers were surveyed regarding their supportive care services and their subjective review of the overall effectiveness of the services provided.

We achieved a 76% response rate (n = 31). The data revealed increases in the number of cancer beds in the hospitals, the degree of integration of supportive care services, the availability of complementary services, and the number of pain and palliative care services offered. There was also an overall shift toward centers becoming more patient centered, as 65% reported now having a patient and family advisory council. Our findings revealed a growing trend to offer distress screening for both outpatients and inpatients. Medical and palliative care directors' evaluations of the supportive care services they offered also significantly improved. However, the results revealed an ongoing gap in services for end-of-life care and timely referrals for hospice services.

Overall, both the quantity and quality of supportive care services in the surveyed NCI-designated cancer centers has improved.

Increasingly, family or friends are providing care to those with cancer. However, the majority of those assuming the caring role have no prior knowledge related to the provision of care. The present study aimed to explore the experiences of informal carers with respect to their role, thus determining ways that services may support transition to this role.

In order to obtain an in-depth view of such experience, a qualitative meta-synthesis was employed to review the findings of 17 studies.

Out of this synthesis, three main concepts were developed: (1) identity and adopting the caring role, (2) the perception of care tasks, and (3) relationship dynamic changes as a result of caring.

The implications for professional practice are discussed.

Due to multiple issues, integrated interdisciplinary palliative care teams in a neonatal intensive care unit (NICU) may be difficult to access, sometimes fail to be implemented, or provide inconsistent or poorly coordinated care. When implementing an effective institution-specific neonatal palliative care program, it is critical to include stakeholders from the clinical, operational, and financial worlds of healthcare. In this study, researchers sought to gain a multidisciplinary perspective into issues that may impact the implementation of a formal neonatal palliative care program at a tertiary regional academic medical center.

In this focused ethnography, the primary researcher conducted semistructured interviews that explored the perspectives of healthcare administrators, finance officers, and clinicians about neonatal palliative care. The perspectives of 39 study participants informed the identification of institutional, financial, and clinical issues that impact the implementation of neonatal palliative care services at the medical center and the planning process for a formal palliative care program on behalf of neonates and their families.

Healthcare professionals described experiences that influenced their views on neonatal palliative care. Key themes included: (a) uniqueness of neonatal palliative care, (b) communication and conflict among providers, (c) policy and protocol discrepancies, and (d) lack of administrative support.

The present study highlighted several areas that are challenging in the provision of neonatal palliative care. Our findings underscored the importance of recognizing and procuring resources needed simultaneously from the clinical, operational, and financial worlds in order to implement and sustain a successful neonatal palliative care program.

In palliative care, health professionals provide support and care for patients for the duration of the unknown time toward death. While the experiences of patients diagnosed with a life limiting illness in palliative care have received some scholarly attention, little research has explored these experiences as described by palliative inpatients themselves. The purpose of this article is to explore how patients describe their lived experiences of time while in a palliative inpatient facility.

This study used a qualitative phenomenological method and nine inpatients were recruited. They were interviewed utilizing in-depth semi-structured interviews, which were audio taped and transcribed. These interview transcripts of their descriptions were the data sources for this inquiry. Their description is part of a broader phenomenological inquiry on the experience of living with a life limiting illness described by palliative inpatients. Data were analyzed to identify essential themes within and across cases.

Three essential themes were revealed: “brief time”; “waiting time,” and “transcendental horizon: future time.” These themes were not mutually exclusive and participant's experiences of time approaching death were described as a time of living toward death.

The findings suggest that patients diagnosed with a life limiting illness have multi-dimensional experiences of time. Understanding the experiences of temporality for patients close to the gravity of death, from the patients' own words, can provide direction for patient informed interventions in clinical practice.

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.

Thiamine-related encephalopathy (Wernicke's encephalopathy) is a neuropsychiatric syndrome caused by a vitamin B1 (thiamine) deficiency often associated with alcoholism. Cancer predisposes patients to thiamine deficiency unrelated to alcoholism, though many cases are missed clinically. The present report adds to the literature on thiamine as a palliative tool for thiamine-related encephalopathy (TRE) in cancer.

From a larger series of TRE in cancer, we report on three cases with terminal illness.

Case 1. A 61-year old woman with Hodgkin's lymphoma developed TRE over 13 days. Precipitants included a hypermetabolic state in the background of subacute thiamine deficiency. Diagnosis was supported by abnormal serum thiamine and positive MRI findings. Mental status improved within 36 hours of initiating thiamine 500 mg IV t.i.d. Case 2. A 68-year-old man with colon cancer metastatic to liver and bone developed TRE precipitated by C. difficile–related diarrhea superimposed on 3 months of low appetite and weight loss. Diagnosis was supported by abnormal serum thiamine, and thiamine 500 mg IV t.i.d. was initiated. Improvements in mental status began within 36 hours. Case 3. An 80-year-old man with squamous cell carcinoma developed TRE precipitated by systemic infection in the context of three weeks of dysphagia. Antibiotic treatment did not reverse his cognitive symptoms, and a diagnosis of TRE was made based on operationalized criteria. Thiamine 100 mg IV daily did not reverse his symptoms. On his 30th day of admission, thiamine was increased to 500 mg IV t.i.d., resulting in a rapid reversal of altered mental status.

This report adds to the list of cancer types in which TRE/Wernicke's encephalopathy has been reported. It supports the use of higher doses of thiamine than are typically recommended in North America. Improvement following treatment allowed patients to engage with family and treatment teams prior to death.