Patients' participation in care is crucial for assuring patients a high quality of care based on values such as autonomy. The patients are supposed to be actively involved in care and treatment, even though these situations are complex, as in the context of end-of-life-care. The aim in this study was to identify demographic and health-related variables‘ relation to patients’ participation during the last three months in life as documented in patients' records.

The population in the present study consists of 229 patients from 49 municipalities in a county in Sweden. Data were collected from all available documentation about deceased patients who were ≥18 years of age at the time of death and who had received healthcare services during the last 3 months of their life.

This article demonstrates patients' participation in end-of-life care as it was noted in the patients' documentation. Demographic variables such as age, gender, and residence did not differ between those who participated and those who did not. Patients with dementia and disorientation were separated from those who were not disoriented. There was no information about the wishes of the patients with dementia and disorientation and they were not described as participating in care and treatment. Cognitive intact patients were participating significant more often. These patients had also more symptom describes in the records. These results can indicate that a patient's participation depends upon either the patient's cognitive capability or the healthcare professionals' competence to communicate and provide adequate documentation regarding patients' participation at end-of-life. The documentation about the participation of patients with cognitive dysfunction is poor and needs further investigation, to achieve the goal of dignified end-of-life care for all patients.

The results of the presents study call attention to the importance of finding innovative solutions to make patients with cognitive dysfunction involved in their care and treatment at end-of-life. Improvement of documentation showing patients' involvement in care is necessary, as is a discussion of how healthcare professionals can assure patients a high quality of care at end-of-life even if patients voices are not heard.

Exploration of complicated grief focusing on the relationship of post-traumatic stress disorder (PTSD) and complicated grief in a population of women at high risk for developing breast cancer. Special reference is made to women who have experienced a material death.

We reflected on the clinical attributes of the Revlon UCLA High Risk Clinic population in terms of their own perceived risk of developing breast cancer. For part of our population, their perceived risk was coupled with their reactions to the loss of their mothers to breast cancer. We compared and contrasted this pattern of reactions to those described by Licihtenthal et al. (2004) in their developmental review of complicated grief as a distinct disorder.

We concluded that our population of women differed from Lichtenthal et al.'s (2004) model for complicated grief. Lichtenthal's group postulated that the key element of complicated grief involves the protracted nature of separation anxiety and distress and excludes PTSD. In our populations, the daughter with complicated grief experiences a combination of separation anxiety and a type of PTSD involving anxiety over the perceived certainty of her own future diagnosis of breast cancer. It was noteworthy that Lichtenthal's model population was composed of individuals caring for terminally ill spouses. Significantly, the spousal caretakers did not have an ongoing genetic link to their partners whereas our population is genetically linked. We postulate that this accounts for the unique presentation of complicated grief and PTSD in our population.

We submit that this combination of complicated grief and PTSD requires a cognitive reframing of thier perceived inevitability of developing breast cancer and desensitization techniques to help high risk women pursue preventative health care rather than avoiding it.

Caregivers of patients with advanced cancer experience physical and emotional strain that can raise their own risk for morbidity and mortality. This analysis was performed to determine whether ENABLE II, a patient-focused palliative care intervention that increased patients' quality of life, reduced symptom intensity, and lowered depressed mood compared to usual care, would affect caregiver burden.

Caregivers of patients with advanced cancer from the parent study completed a caregiver burden scale and patients completed quality of life, symptom intensity, and depressed mood measures. Data were collected at baseline, 1 month, and every 3 months thereafter until patient death or the study ended. Decedents' caregivers were asked to complete an after-death interview regarding the quality of care that the patient received.

There were no significant differences in caregiver burden between intervention and usual care conditions. Follow-up analyses showed that higher caregiver objective burden and stress burden were related to lower patient quality of life, higher symptom intensity, and higher depressed mood. Caregivers who perceived that patients had unmet needs at end of life reported higher objective burden, and those who perceived that patients were not treated with respect reported higher demand burden.

The results indicate that a successful patient-focused intervention did not have a similar beneficial effect on caregiver burden. Future interventions should focus on caregivers as well as patients, with particular attention to caregivers' perceptions of patient care, and seek to change both negative and positive effects of informal caregiving.

This study addressed factors physicians employ in their communication of a terminal diagnosis and a hospice referral to Hispanic patients.

The research method used was an exploratory qualitative in-depth semi-structured interview with thematic analysis. The interviews were with ten physicians in Central Florida. The interviews were conducted in Spanish and/or English with physicians who serve terminally ill Hispanic patients.

The findings provide vital information on factors that impact communication of diagnosis and hospice referral. Themes emerged relating to role of family members and end-of-life decision-making. Language barriers and limited knowledge of cultural factors and beliefs impacted communication related to end-of-life decisions. Gaps in training and education for physicians were also identified.

These results suggest that discussing end-of-life issues with the diverse category of Hispanic patients and families will be enhanced by eliminating language barriers, increased understanding of the role of family members, and knowledge of cultural factors and beliefs related to end-of-life decisions.

The aim of the study was to investigate the experience of being next of kin to an older person in the last phase of life as narrated after the older person's death.

Qualitative interviews were performed with the next of kin (n = 17) to people aged 75 years and older who had recently died and had received help and/or care from the municipality in the last phase of life. Eleven women and six men participated, of whom seven were spouses, nine were children, and one was a grandchild. The interviews were analysed using qualitative content analysis.

The experience of the next of kin could be understood as being a devoted companion during the transition toward the inevitable end, embracing the categories of living in the shadow of death; focusing on the needs of the dying person, making adjustments to everyday life; feeling the major responsibility; struggling with the health and social care system; and gaining strength from support.

Being next of kin to an old person at the end of life means being a devoted companion during the transition toward the inevitable end, including the feeling of bearing the major responsibility and the need to be acknowledged by professionals. This study points to the importance of having access to professional care when it is needed, to complement and support the next of kin when his or her own resources and strength falter. This also includes support to enable the next of kin to remain involved in the care of his or her loved ones, thereby fulfilling their own wishes.

In the last decade, some attention has been given to spirituality and faith and their role in cancer patients' coping. Few data are available about spirituality among cancer patients in Southern European countries, which have a big tradition of spirituality, namely, the Catholic religion. As part of a more general investigation (Southern European Psycho-Oncology Study – SEPOS), the aim of this study was to examine the effect of spirituality in molding psychosocial implications in Southern European cancer patients.

A convenience sample of 323 outpatients with a diagnosis of cancer between 6 to 18 months, a good performance status (Karnofsky Performance Status > 80), and no cognitive deficits or central nervous system (CNS) involvement by disease were approached in university and affiliated cancer centers in Italy, Spain, Portugal, and Switzerland (Italian speaking area). Each patient was evaluated for spirituality (Visual Analog Scale 0-10), psychological morbidity (Hospital Anxiety and Depression Scale— HADS), coping strategies (Mini-Mental Adjustment to Cancer — Mini-MAC) and concerns about illness (Cancer Worries Inventory — CWI).

Results. The majority of patients (79.3%) referred to being supported by their spirituality/faith throughout their illness. Significant differences were found between the spirituality and non-spirituality groups (p ≤ 0.01) in terms of education, coping styles, and psychological morbidity. Spirituality was significantly correlated with fighting spirit (r = −0.27), fatalism (r = 0.50), and avoidance (r = 0.23) coping styles and negatively correlated with education (r = −0.25), depression (r = −0.22) and HAD total (r = −0.17).

Spirituality is frequent among Southern European cancer patients with lower education and seems to play some protective role towards psychological morbidity, specifically depression. Further studies should examine this trend in Southern European cancer patients.

Although delirium is a common psychiatric complication in cancer patients, it is often not accurately recognized. To date, the characteristics and outcome of misrecognized patients are unclear in the cancer setting. This retrospective study was planned to determine the recognition by oncologists at the psychiatric consultation, characteristics, reversibility and outcome of misrecognized patients with delirium.

We reviewed charts of 60 patients diagnosed with delirium by the psycho-oncologists who were referred to the psychiatric consultation by the oncologists. Information about demographics, initial assessment by the oncologists, delirium subtype, precipitating factors, intervention for delirium, reversibility, and final status was obtained.

Twenty-two among 60 delirious patients were misrecognized by the oncologists at the time of consultation. They were often diagnosed as having anxiety or other psychiatric disorders. Misrecognized participants were significantly younger than accurately recognized cases of delirium. The psychiatrists made suggestions to the oncologists for all the referred patients, even when they were accurately diagnosed with delirium before consultation. For the correctly recognized patients, the main suggestion was pharmacological reevaluation. For the misdiagnosed cases, the psychiatrists suggested a reconsideration of the strategy for cancer treatment and the provision of information to the patient's family members about their condition.

Despite its high prevalence, delirium is difficult to diagnose for non-psychiatric physicians. Its detection is important not only to give the best treatment option to cancer patients but also to provide the best opportunity to inform their family about their condition and end-of-life issues.

Research into parental loss has led to an understanding of the types of reactions and responses that children, and to a lesser extent adolescents and young adults, have when a parent dies. Only limited studies, however, have directly investigated the psychosocial needs of young people during this period. The aim of the current study was to identify and better understand the needs of adolescents and young adults who have lost a parent to cancer, and to ascertain the extent to which these needs had been met.

As the study is exploratory in nature, a qualitative questionnaire was used to explore the needs and unmet needs of adolescents and young adults who have had a parent die of cancer. Sixty-two parentally bereaved young people aged 12–23 participated.

The data were thematically analyzed and seven conceptually distinct need themes emerged, namely: support and understanding; help coping with feelings; to talk to people who have had a similar experience; information; have a break/have fun; space and time to grieve; and help with household responsibilities.

The research findings will assist health professionals in developing services and interventions which are more responsive to the needs of parentally bereaved young people.

Much is known about the important role of spirituality in the delivery of multidimensional care for patients at the end of life. Establishing a strong physician–patient relationship in a palliative context requires physicians to have the self-awareness essential to establishing shared meaning and relationships with their patients. However, little is known about this phenomenon and therefore, this study seeks a greater understanding of physician spirituality and how caring for the terminally ill influences this inner aspect.

A qualitative descriptive study was used involving face-to-face interviews with six practicing palliative care physicians.

Conceptualized as a separate entity from religion, spirituality was described by participants as a notion relating to meaning, personal discovery, self-reflection, support, connectedness, and guidance. Spirituality and the delivery of care for the terminally ill appeared to be interrelated in a dynamic relationship where a physician's spiritual growth occurred as a result of patient interaction and that spiritual growth, in turn, was essential for providing compassionate care for the palliative patient. Spirituality also served as an influential force for physicians to engage in self-care practices.

With spirituality as a pervasive force not only in the lives of palliative care patients, but also in those of healthcare providers, it may prove to be beneficial to use this information to guide future practice in training and education for palliative physicians in both the spiritual care of patients and in practitioner self care.

In the United Kingdom, a Four-Tier Model of Psychological Support has been recommended for all patients with cancer and their families. This model suggests that staff at Tier 2, such as nurses, doctors, and allied health professionals, should be proficient in screening for psychological distress and intervening with techniques such as psycho-education and problem solving. Research has suggested that although communication skills training is essential for staff working in cancer services, it does not necessarily improve the detection of specific psychological disorder or staff confidence in intervening with highly distressed patients. The objective was therefore to design a training program that addressed this deficit and was easily accessible to hospital staff.

Method:. A training package was developed to train staff in the recommended skills. A literature review of teaching modalities and the effectiveness of different formats was conducted. A four-session program was developed, to be administered by staff at Tiers 3 and 4 of the model, such as clinical psychologists and counsellors.

Over 3 years, 255 sets of data were collected from staff who attended the course. Precourse, postcourse, and 6-month follow-up data were collected through the use of confidence questionnaires, developed from the literature. The data show a significant improvement in staff confidence across all domains measured, including confidence in the detection and management of psychological distress (p =.0001).

Although the results have limitations and the data are subjective, we can conclude that this course significantly improves staff confidence in dealing with psychological distress and that this increased confidence is maintained over a 6-month follow-up period.

The purpose of this study was to determine the factors which influence advance directive (AD) completion among older adults.

Direct interviews of hospitalized and community-dwelling cognitively intact patients >65 years of age were conducted in three tertiary teaching settings in New York. Analysis of AD completion focused on its correlation with demographics, personal beliefs, knowledge, attitudes, and exposure to educational media initiatives. We identified five variables with loadings of at least 0.30 in absolute value, along with five demographic variables (significant in the univariate analyses) for multiple logistic regression. The backward elimination method was used to select the final set of jointly significant predictor variables.

Of the 200 subjects consenting to an interview, 125 subjects (63%) had completed ADs. In comparing groups with and without ADs, gender (p < 0.0002), age (p < 0.0161), race (p < 0.0001), education (p < 0.0039), and religion (p < 0.0104) were significantly associated with having an AD. Factors predicting AD completion are: thinking an AD will help in the relief of suffering at the end of life, (OR 76.3, p < 0.0001), being asked to complete ADs/ or receiving explanation about ADs (OR 55.2, p < 0.0001), having undergone major surgery (OR 6.3, p < 0.0017), female gender (OR 11.1, p < 0.0001) and increasing age (76–85 vs. 59–75: OR 3.4, p < 0.0543; <85 vs. 59–75: OR 6.3, p < 0.0263).

This study suggests that among older adults, the probability of completing ADs is related to personal requests by health care providers, educational level, and exposure to advance care planning media campaigns.

Delirium is a clinical syndrome that is known to be under recognized by palliative care teams. A wide variation in reported prevalence may reflect differences in definitions and assessment methods, patient characteristics, and study design. The aim of this study was to test an intervention to improve recognition of delirium in the inpatient palliative care setting.

We conducted a retrospective palliative care notes review of documented prevalence of delirium among 61 patients referred to the Specialist Palliative Care Advisory Team (SPCT). Subsequently, training in the use of the Confusion Assessment Method (CAM) was provided to the SPCT and a prospective survey of the prevalence of delirium measured by the CAM was undertaken with the next 59 patients referred.

In the retrospective chart review, the term “delirium” was not used, and synonyms were identified and used to establish a delirium prevalence of 11.5%. In the intervention utilizing the CAM in a prospective sample of 59 referred patients, a prevalence rate of 8.5–15.2% for delirium was found. Use of the CAM was received favorably by the SPCT.

The institution of the use of the CAM as a screening and assessment tool in the inpatient palliative care setting did not significantly increase the recognition of delirium. Reasons for the low prevalence of delirium are discussed.

This project sought to evaluate the impact of a hospital-based Palliative Care Consultation (PCC) service utilizing a common practice: the resident mortality review conference.

Internal Medicine residents used a revised chart audit tool during the mortality review conference, which included domains described in the Clinical Practice Guidelines for Quality Palliative Care (2004). This study attempted to transform the common practice into a methodology for collecting data that could be used as a platform to assess the quality of hospital care near the end of life. In this review, the residents were asked not only “what care was delivered appropriately?” but “what could we have done?” to relieve the patient's and family's suffering.

The results showed that the mortality review process could be used to assess care at the end of life. It also showed that those patients who received a PCC received better care. Symptoms were addressed at a significantly higher rate for those patients who received a PCC than for those who did not. Specifically, these were symptoms of pain (75% vs. 51%, p <.0001), dyspnea (75% vs. 59%, p < 0.0001), nausea (28% vs. 18%, p < 0.0001), and agitation (53% vs. 33%, p < 0.0001).

The mortality review process was found to be valuable in assessing care delivery for patients near the end of life. The tool yielded results that were consistent with findings of other studies looking at pain and symptom management, advance care planning, and the rate of palliative care consults across major diagnostic categories, supporting the face validity of the mortality review process.

Family members who take on the role of caregiving for someone who is dying begin bereavement after being emotionally and physically taxed by the caregiving experience. The course of bereavement is influenced by a number of factors, including health problems, financial concerns, social support, and family relationships. This paper reports on findings from a secondary analysis of qualitative data from a study examining family caregiver coping in end-of-life cancer care, to describe, from the perspectives of bereaved family caregivers, their perspectives on what made their grief difficult.

Qualitative data from three focus groups with family caregivers (n = 19) and two focus groups with health professionals (n = 14) were subjected to interpretive thematic analysis.

Our finding suggest three broad areas that make family caregivers' grief difficult: (1) dealing with occurrences in everyday life; (2) dealing with challenges specific to the caregiving situation; and (3) dealing with the healthcare system.

The findings provide an important beginning point in understanding the types of issues that seem to make grief difficult for family caregivers of cancer patients at the end of life and can help professional groups to understand what is needed by family caregivers in terms of support and delivery of services.

A longitudinal pediatric palliative care curriculum was introduced into the pediatric residency program at the University of California, Los Angeles. The present study explores the possible effects of this curriculum on the interns' self-assessed comfort levels regarding caring for children with life-threatening conditions.

A newly created assessment tool was administered to interns in order to rate their comfort regarding pediatric palliative care at the beginning and conclusion of their intern year.

Twenty-two of the 29 interns completed this survey. Baseline data indicated 55% of the interns had some experience with taking care of a dying pediatric patient during their medical school training, and 79% indicated that they had taken care of a dying adult. Only 7% of the interns felt adequately prepared to deal with death and dying, but all interns indicated interest in further learning about pediatric palliative care. Comparison of the overall comfort levels of the 22 responding residents before and after the first year of training in 20 different related tasks demonstrated a significant self-assessed improvement of comfort in seven areas. There was no increase in self-reported comfort in communication related to palliative care.

Residents indicated increased comfort in some areas of pediatric palliative care after the first year of their training. The underlying cause of this increased comfort is unclear at this time. The overall effect of longitudinal palliative care curriculums on residents' level of comfort in caring for this population deserves further assessment.

The aim of this study was to explore the significance of fatigue among relatives of palliative patients.

This pilot study has a descriptive and cross-sectional design and is the report of four open-ended questions focusing on the relatives' experiences of fatigue. The study population consisted of relatives of patients who were cared for in palliative care settings either at home or in an institution in Uppsala County during a specific day.

The relatives were very tired and identified worries, uncertainty, the patient's suffering, and many demands as the causes for the fatigue. The most obvious consequences of the tiredness were a lack of motivation, feelings of insufficiency and apathy, and putting their own interests aside. Many relatives expressed that having the company of close family members, taking exercise and spending time outdoors gave them strength to carry on. The health care system could make the situation easier for relatives of patients in palliative care by providing good care for the patient, and psychosocial support and respite care for the relatives.

The result of the pilot study is only preliminary, but it showed that relatives caring for patients in a late palliative phase suffer from great fatigue and require more attention, both scientifically and in the clinical settings.