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.

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.

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.

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.

The purpose of this study is to identify psychiatric disorders and stress factors experienced by staff members in cancer hospitals who were referred to psychiatric consultation service, and to investigate the association between psychiatric disorders and stress factors.

A retrospective descriptive study using clinical practice data on staff members referred to psychiatric consultation service, obtained for 8 years, was conducted at two National Cancer Center Hospitals in Japan. Psychiatric disorders were identified according to DSM-IV. Stress factors were extracted from a chief complaint at the initial visit in medical charts, using a coding approach, and grouped as job stress or personal stress. The frequencies of the stress factors were determined by two coders who were unaware of the categorized procedure. Fisher's exact test was used to determine the association between psychiatric disorders and stress factors.

Of 8077 psychiatric consultations, 65 (1%) staff members were referred. The most common psychiatric disorder was adjustment disorder (n = 26, 40%), followed by major depression (n = 17, 26%). Eight stress factors were identified from 76 meaning units and were grouped into five job stresses and three personal stresses. Of the five job stresses, four were most frequently experienced in adjustment disorders, and “failure to adapt to job environmental change” was significantly associated (p = 0.014). Two of the three personal stresses were most frequently experienced in psychiatric disorders other than major depressive disorder and adjustment disorders, and “suffering from mental disease” was significantly associated (p = 0.001).

We found that very few staff members were provided with psychiatric consultation service. A comprehensive support system for job stress might be needed to prevent adjustment disorders, as those are suggested to be the most common psychiatric disorders among staff members in cancer hospitals.

This article summarizes the findings from a 3-year independent evaluation of a regional Child Bereavement Service (CBS). The service was commissioned by a Primary Care Trust in Northern England, and funded by a British cancer charity, Macmillan Cancer Support. The need for a CBS was recognized by members of a Palliative Care Group who identified a gap in local services for bereaved children, who may be susceptible to short/long-term psychiatric/psychological disorders. The service was established to offer support for professionals working with bereaved children and their family.

Interventions provided by the service included pre/post bereavement support, individual work with the child and/or family, and group work. An evaluation (2004–2007), was conducted to inform service development utilizing semi-structured interviews with parents/carers of service users (n = 20), and semi-structured interviews with healthcare professionals (n = 8). Interviews were recorded, transcribed verbatim, and analyzed using grounded theory methods.

Referrals were higher than expected. Sixty per year were anticipated; however, in the first year alone, there were 255 referrals. Health and social care professionals who attended training courses, provided by the CBS staff, expressed confidence in providing bereavement support themselves, or by making appropriate referrals to the CBS. Parents and carers welcomed a service specifically for their children.

The CBS is a viable organization that supports bereaved children as expressed in this article.

Major cancer centers cannot ignore psychosocial patient needs that have a significant impact on the process of adjustment to cancer and on compliance to treatments. We introduced a new service, the Gigi Ghirotti Psychosocial Cancer Phone Center (GGPCPC), staffed by professional psychologists, for use by our patients and their relatives. This article investigates its feasibility as a support delivery vehicle for patients in their follow-up phase, and also investigates patients' sense of abandonment related to their care setting.

A close collaboration was set up between GGPCPC psychologists and European Institute of Oncology (IEO) psychologists. Education and awareness sessions regarding the importance of such a source of psychological support were conducted by IEO psychologists with nurses, secretaries, and receptionists. IEO psychologists input monthly data, recorded on specific paper-tabs by GGPCPC psychologists for each call received by the phone center between March 2007 and March 2009, into a SPSS database.

Four hundred and thirty individuals contacted the center mainly to receive psychological support during their treatment phase, when they visited IEO for treatment sessions. Multiple indicators suggest that this telephone support program was feasible and provided support to a broad range of cancer patients. Patients seemed to prefer it to face-to-face psychological support during their treatment-phase.

The GGPCPC was demonstrated to be an efficacious support and information delivery vehicle for patients and relatives during the illness course.

The aim of this study was to explore the symptom experience of patients with cancer, identify changes in symptoms over time, and explore the congruence of symptom reports between patients and their informal caregivers.

This was a prospective longitudinal evaluation of symptoms over 1 year from start of treatments (T1) using the Memorial Symptom Assessment Scale. Assessments and follow up took place at 3 months (T2), 6 months (T3) and 12 months (T4). A heterogeneous sample of 100 patients with cancer participated, providing 325 assessments over time. Furthermore, 82 caregivers also participated, providing 238 dyadic patient–caregiver assessments over the same time.

The most commonly occurring, and by far most distressing, symptom was “lack of energy.” Common symptoms reported were lack of concentration, difficulties sleeping, shortness of breath, cough, pain, dry mouth, and feeling drowsy. Symptom occurrence and distress improved over time, particularly from T2 to T3 (p < 0.05), but the “chronicity” of some generic symptoms was notable. Caregivers tended to overestimate occurrence and distress compared to patients, particularly in symptoms of psychological nature; κ statistics had a highest coefficient of 0.45, suggesting moderate agreement between patients and caregivers at best.

More attention needs to be paid to the commonly reported symptoms by patients, as they have the potential of impacting on quality of life (QOL). As patient–caregiver reports had moderate agreement, effort should be directed to improving this agreement, as caregivers are often communicating patient symptoms to clinicians.

To encourage communication and contribute to the palliative care movement's need for interdisciplinary care, this article offers to explore the stance of volunteers on two fundamental concepts, “health” and “illness,” as well as their related understanding of “palliative care.” Volunteers' understandings are then compared with the concepts put forth by the Canadian Hospice Palliative Care Association (CHPCA) in its “Model to Guide Hospice Palliative Care.”

Focus groups with volunteers, and individual interviews with coordinators from five selected palliative care community action organizations from across Canada, are used. A total of 65 participants from three Canadian provinces were interviewed.

Participants view illness as a subjective, multidimensional, and transformative experience that requires multiple adjustments. It is an impediment to personal equilibrium and a challenge for the terminally ill and their close ones. Health, on the other hand, is a complex phenomenon that consists of physical, psychological, social, and spiritual well-being. For participants, health is most often embodied by a person's capacity to adjust to their challenging circumstances. Both volunteers and coordinators see palliative care as an alternative approach to care that centers on helping patients and their families through their ordeal by offering comfort and respite, and helping patients enjoy their life for as long as possible.

Participants describe illness as a destabilizing loss and palliative care as a means to compensate for the numerous consequences this loss brings; their actions reflect these principles and are compatible with the CHPCA model.

The aim of this study was to describe the last year of life of a sample of the oldest old, focusing on care trajectories, health, social networks, and function in daily life activities.

Data originated from the NONA study, a longitudinal study of 193 individuals among the oldest old living in a Swedish municipality. During this longitudinal study, 109 participants died. Approximately one month after their death, a relative was asked to participate in a telephone interview concerning their relative's last year of life. One hundred two relatives agreed to participate.

Most of the elderly in this sample of the oldest old (74.5%) died at an institution and the relatives were mostly satisfied with the end-of-life care. The oldest old relatives estimated that the health steadily declined during the last year of life, and that there was a decline in performing of daily life activities. They also estimated that those dying in institutions had fewer social contacts than those dying in a hospital or at home.

Care at end of life for the oldest old is challenged by problems with progressive declines in ability to perform activities of daily living and health. The findings also highlight the need to support social networks at eldercare institutions.

In many studies, everyday life has been shown to be of great significance in the context of life-threatening cancer. The aim of this study was to investigate how people with cancer who are receiving palliative care engage in and undertake activities in their everyday lives.

This is a qualitative interview study adopting a grounded theory approach. The sample was composed of participants receiving services from palliative hospital-based home care and day care services. A total of 47 individuals were interviewed.

Despite experiencing the threat of progressive loss of functioning, the participants were striving to remain involved in and to be active in everyday life. Continued involvement in everyday life with lowered expectations concerning performance gave the participants the possibility to continue doing daily activities as well as to perform new and engaging activities that were a source of pleasure and enabled the patients to feel a sense of competence.

This study has demonstrated the power of being involved in everyday life activities. The proposed model, explaining individuals' desire to continue to live an active life despite a progressive loss of functioning, can provide a model to help the reasoning of professionals when supporting patients in their everyday life.

Occupational and physical therapists can have a significant impact on the quality of life of terminally ill cancer patients. In the critical care setting, rehabilitation is often overlooked. However, occupational and physical therapists work with critically-ill patients to create realistic and meaningful goals for improving comfort, mobility, socialization skills, and ability to care for oneself regardless of disease state and medical status. The following case report describes rehabilitation intervention with a young woman diagnosed with osteosarcoma and leukemia during the final stage of her life.

This case report highlights the use of patient-centered goals and the importance of close collaboration between the patient, occupational therapist, and physical therapists to achieve a higher quality of life.

A collaborative effort by the occupational and physical therapists yielded positive outcomes as defined by the patient, patient family, and the medical staff in the critical care setting.

Palliative care patients may benefit from occupational therapy (OT) and physical therapy (PT) intervention. Rehabilitation specialists are skilled at working with patients to set realistic and meaningful functional goals. Further study on rehabilitation treatment to improve quality of life among patients in palliative care is needed.