Cancer patients' experiences of communicating and dealing with their older parents: A qualitative study.

PURPOSE: In 2017 almost 25,000 Belgians between 40 and 60 years (38% of new diagnoses) were diagnosed with cancer. With increasing life expectancy the chance augments that these patients still have older parents alive. This implies that oncology care should also take into account the impact cancer may have on (the relationship with) older parents. The purpose of this study was to explore how cancer patients communicate and deal with their older parents during the illness trajectory. METHOD: Semi-structured interviews were conducted with 11 cancer patients. Interview transcripts were analysed using the principles of the constructivist Grounded Theory Approach. RESULTS: Depending on the situation, the time frame and the person the patients are talking about, cancer patients oscillate between perspectives (I, They and We). A common denominator in all three perspectives is silence fuelled by different forms of solicitude (self-protection and other-protection). This solicitude underpins the cancer patients' communicative behaviours and ways of relating towards their parents. CONCLUSIONS: Present findings underline the importance of health care providers considering the often hidden complexity of giving information and talking about feelings. Nurses' strategies must be designed not to harm the existing mechanism of solicitude and the diligent management of the patients' relationship with their parents. Conversations about functionality of avoiding certain topics and the impetus behind certain communicative patterns should be put forward instead of consensually advising open communication.

Health professionals' dealing with hope in palliative patients with cancer, an explorative qualitative research.

Hope is important for individuals with cancer in palliative care. Health professionals' perspective on hope affects the communication with palliative patients. The aim of this study was to explore how Dutch health professionals deal with palliative patients with cancer who hope for prolongation of life. Focus group discussions (FGD) were conducted. An interpretive description approach was used to understand the interpretation of and reaction to hopefulness in palliative patients with cancer by health professionals. Three FGDs were held, each consisting of five to ten health professionals working with palliative patients recruited in a general Dutch hospital and homecare organisation. The ways in which the participating health professionals interpret hope in palliative individuals with cancer and their behaviour towards these hopeful palliative patients are shaped by their reliance on their own normative ideas. Patients' hopefulness generally violates these norms and is, therefore, considered a problem that requires intervention. Hope that does not correspond with the medical facts is experienced as problematic by Dutch health professionals who therefore believe they should intervene and do something about it. Health professionals are challenged to face and address patients' and families' perceptions of hope, especially when those perceptions might differ from their own as professionals.

Trust: an essential condition in the application of a caregiver support intervention in nursing practice.

BACKGROUND: The recent policy of deinstitutionalization of health care in Western countries has resulted in a growing number of people - including elderly - with severe mental illness living in the community where they rely on families and others for support in daily living. Caregiving for partners, parents, children, and significant others can be a stressful experience and has been associated with psychosocial problems and poorer physical health. To support caregivers, a new, complex, nurse-led caregiver - centered intervention was developed. The intervention focuses on preventing deterioration in the wellbeing of caregivers. The objective of this study is to obtain a better understanding of the potentials of this new intervention. METHODS: We applied an interpretative qualitative field study at two Dutch mental health care institutes. Thirteen caregivers participated in a one-time semi-structured interview. RESULTS: From the caregivers' perspective, a trusting relationship between caregivers and the mental health nurse is an essential condition for the depth and hence the effectiveness of the caregiver-centered counseling intervention. In this trusting relationship three overlapping and mutually reinforcing phases were identified (1) phase of engagement, (2) recognition of personal needs and (3) hope and optimism. Each phase encompasses key experiences that enhanced trust in that phase. CONCLUSIONS: Collaborative relationships between caregivers and mental health nurses provide a framework in which the mental health nurse can assess and help not only patients but also caregivers to gain insight into their situation and take on new roles and responsibilities in ways that promote their wellbeing.

The suffering in silence of older parents whose child died of cancer: A qualitative study.

As life expectancy grows, the death of an adult child becomes a highly prevalent problem for older adults. The present study is based on nine interviews and explores the experience of parents (≥70 years) outliving an adult child. The bereaved parents described some silencing processes constraining their expression of grief. When an adult dies, the social support system nearly automatically directs its care towards the bereaved nuclear family. Parental grief at old age is therefore often not recognized and/or acknowledged. Health care providers should be sensitive to the silent grief of older parents both in geriatric and oncology care settings.

An instrument to collect data on frequency and intensity of symptoms in older palliative cancer patients: A development and validation study.

PURPOSE: To develop and validate an instrument to collect data on symptoms (frequency/intensity) in older palliative cancer patients. METHODS: A four-phase instrument development and validation study was performed. A preliminary version of the instrument was developed through a literature review. Face- and content validity were assessed in a Delphi-procedure with eleven experts. Cognitive interviewing with 24 older cancer patients was performed to enhance content validity of the instrument. Test-retest was performed to assess the stability. RESULTS: An 40-item instrument was developed. The Assessment Symptoms Palliative Elderly (ASPE) collects data on frequency and intensity of 24 physical, 10 psychological, 3 functional, 1 spiritual and 2 social symptoms. Content validity was excellent (I-CVI 81.8%-100.0% and S-CVI 92.9%). Cognitive interviewing allowed to improve the content validity. Test-retest showed substantial to almost perfect agreement for 87.5% of the items. No item had poor or fair agreement. CONCLUSION: This study resulted in the development of the ASPE which reflects good properties for face- and content validity and reliability. Cognitive interviewing has a valuable contribution in the validation process. The instrument can be used to gain insight in symptoms in older palliative cancer patients.

Oncology health workers' views and experiences on caring for ethnic minority patients: A mixed method systematic review.

OBJECTIVES: To investigate what published research reveals about the views and experiences of oncology health workers when caring for ethnic minority patients. DESIGN: Systematic review of qualitative and quantitative studies. DATA SOURCES: The following databases were systematically screened: PubMed, CINAHL, Web of Science, and AnthroSource. Reference lists were checked for additional articles. REVIEW METHODS: Empirical studies or systematic reviews (1/2000 to 12/2013) were included if they concerned the oncology setting and the views or experiences of healthcare workers and care users belonging to an ethnic or cultural minority group. The methodological quality of each individual study was assessed using the Critical Appraisal Skills Programme for Qualitative Studies and the Quality Assessment Tool for Quantitative Studies. RESULTS: Eighteen publications met the inclusion criteria. Thirteen articles had a qualitative, four a quantitative, and one a mixed methods design. The results in the individual studies were heterogeneous. Most studies reported challenges or barriers when caring for ethnic minority patients, whereas fewer than half of the articles discussed facilitating factors and opportunities. Oncology health workers participating in the included studies sought to provide professional standards of care and tried to adapt care to the needs of ethnic minority patients. However, they experienced formidable communication barriers and they feared doing things that might be considered culturally insensitive. The organizational aspects of care for the oncology patient appeared to have a significant influence on how healthcare providers view and experience oncology care for ethnic minority patients. CONCLUSIONS: Views and experiences of participating oncology health workers were characterized by a willingness to provide proper care for ethnic minority patients, but this was hampered by a tangle of interrelated issues such as linguistic barriers, fear and uncertainty, and assumptions about cultural matters. Organizational aspects were shown to be a strong influence on healthcare workers caring for ethnic minority patients. Due to methodological limitations of the included studies, conclusions should be viewed with caution.

Factors Influencing Adherence in Cancer Patients Taking Oral Tyrosine Kinase Inhibitors: A Qualitative Study.

BACKGROUND: Nonadherence in cancer patients taking oral anticancer drugs is common. Reasons for nonadherence are still not really understood as influencing factors are often complex, dynamic, and interrelated. OBJECTIVE: A qualitative study was conducted to gain insight into (non-)adherence behavior in patients taking oral tyrosine kinase inhibitors by exploring (1) processes and factors influencing (non-)adherence and (2) their interrelatedness. METHODS: Semistructured interviews were held with 30 patients of different ages and with different types of cancer. A grounded theory approach was used. RESULTS: Three foci were found when dealing with oral tyrosine kinase inhibitors: (1) a focus on survival, (2) a focus on quality of life, and (3) a balance between survival and quality of life. The process of adherence was determined by a set of complex and interrelated influencing factors: treatment-related side effects, hope, anxiety, trust, and feedback mechanisms. CONCLUSIONS: This qualitative study gives insight into processes and factors influencing (non-)adherence behavior in patients taking oral tyrosine kinase inhibitors. The results of this study can help healthcare professionals understand why patients taking oral tyrosine kinase inhibitors do not always adhere to their therapy. IMPLICATIONS FOR PRACTICE: Conditions should be created by which patients get maximum opportunity to establish a balance between survival and quality of life. An open climate and a trust-based relationship should be established in which patients feel comfortable to openly discuss their therapy and the difficulties they experience.

Caring for Family Members Older Than 50 Years of Turkish and Northwest African Descent: The Meaning of Caregiving.

BACKGROUND: The first generation of immigrants to Belgium from Turkey and Northwest Africa are aging and at risk for developing cancer. Family members play an important role in both illness and old age. OBJECTIVE: The objective of this study was to gain insight into experiences and perceptions of families with Turkish or Northwest African backgrounds who were caring for cancer patients older than 50 years in Flanders, Belgium. METHODS: A qualitative research design with elements of constructivist grounded theory was used. Twenty-eight loosely structured interviews were conducted. Three researchers were involved in data analysis (researcher triangulation), and 6 conversations took place with experts. RESULTS: Cancer appeared to be a family matter. Caregiving had a strong moral meaning for all participants, particularly for children providing care to a parent. Caregiving could be described as "guiding": family members led the patient through, or familiarized the patient with, the healthcare system. There were strong differences in the extent to which family members believed they should provide care, as well as the kind of professional care considered desirable. CONCLUSIONS: Despite shared values of the importance of family and family caregiving, concrete ideas about caregiving differed considerably. The findings imply that shared cultural or religious normative values do not predict day-to-day care practices. IMPLICATIONS FOR PRACTICE: This study provides new insights into the moral and practical meaning of caregiving, which will help professionals understand the roles adopted by family members. Furthermore, individualized approaches to care appear to be essential, because concrete ideas about informal caregiving differ strongly despite shared values.

Driven by Ambitions: The Nurse Practitioner's Role Transition in Dutch Hospital Care.

INTRODUCTION: Insight into nurse practitioners' (NPs') role transition can help NP students and new graduates in taking on new responsibilities in a changing and demanding healthcare context. The aim of the research was to explore the role transition from nurse to NP using the components of Meleis's Framework of Transitions. METHOD: A qualitative descriptive design was used. Individual interviews (n = 9) and two focus group discussions (n = 12) were held with NPs. Data were analyzed with the directed content analysis method. FINDINGS: The Framework component transitions' nature was characterized by changes in the healthcare system, combined with professional and educational role changes. Transition conditions showed that the respondents felt distressed after they became accountable for a patient's care and well-being. Although the respondents were authorized to do medical procedures, they initially lacked nursing role models and NP protocols. Process indicators showed ongoing transition; the respondents were still developing clinical competencies and confidence in patient care while relying on earlier acquired nursing competencies. Outcome indicators showed that the respondents found themselves successful in the medical extension of two different nursing roles: continuity of medical care for hospitalized patients in acute and intensive care settings, and being responsible for continuity of care for chronic patients in outpatient clinics. CONCLUSIONS: Role transition was characterized by coping with feelings of distress at the cost of time and effort. The respondents' strategies to adapt to new expectations, combined with organizational support, determined the outcomes as well as the start of new transitions. CLINICAL RELEVANCE: NPs' role transition in hospital care implies a dynamic ongoing process that needs to be supported, with the ultimate goal to improve patient outcomes.

Mental health nurses' support to caregivers of older adults with severe mental illness: a qualitative study.

BACKGROUND: Literature has shown the serious impact of severe mental illness on the daily life of caregivers. We studied reported caregiver support practices by mental health nurses for use in the development of a nursing intervention. We aimed to explore current caregiver support practices by mental health nurses. METHODS: Twenty-one participants completed semi-structured interviews, and 17 participants attended two focus groups. All interviews were audio-taped, transcribed and coded for qualitative analysis. RESULTS: The diversity in caregiver support could best be described by three prototypes: the tolerator, the preventer and the concerner, representing three approaches of involvement with caregivers. At one end of the spectrum are mental health nurses (MHN) who are essentially only concerned with the wellbeing of the care recipient and see the caregiver as a potential impediment in reaching the client's goals. We call these the tolerators. At the other end of the spectrum are the MHNs who see the caregiver and the care recipient as inextricably connected with each other. In these cases the MHN directs her/his intervention towards both the informal caregiver and the care recipient. We call these the concerners. In the middle position are MHNs who realize that caregivers are important agents in the achievement of the client's goals, and therefore consider preventing them from becoming overburdened as an important goal. We call these the preventers. CONCLUSIONS: Based on the extent to which the MHNs believe that the informal caregiver plays a necessary role in the client's support system, and the degree to which they feel responsible for the caregiver's wellbeing, three MHN prototypes can be distinguished. These prototypes determine how the nurses' vision directs their understanding of their role and responsibilities and the content of their behaviour. This implies that a change in behaviour needs to be preceded by a change in vision. Therefore, promoting family support cannot be achieved by one-size-fits-all-programmes.

Tightrope walkers suffering in silence: A qualitative study into the experiences of older parents who have an adult child with cancer.

BACKGROUND: Given the worldwide ageing of the population and the changes in the structure of society and family, the likelihood increases that older parents face a serious illness in an adult child and will even outlive their child. OBJECTIVES: To gain insight into older parents' experiences, concerns, and dilemmas regarding their position and role as a parent of an adult child with cancer. DESIGN: Qualitative interview design. SETTING: A geriatric ward and four oncology wards of a university hospital, several nursing homes, local health service agencies. PARTICIPANTS: Twenty-five parents (age range 65-91 years) of 22 adult children with cancer (age range 33-66 years) of differing stages and types (with a preponderance of breast cancer). METHODS: Using a qualitative research methodology underpinned by grounded theory, we conducted semi-structured interviews with a fairly open framework. RESULTS: Suffering in silence emerged as the core category encapsulating three interrelated balancing acts: (1) shielding their child while being shielded by their child, (2) being involved while keeping an adequate distance, and (3) shifting attentional priorities between their child, themselves, and others. The emotional interconnectedness between older parents and their adult child with cancer becomes tangible in the transformational process of their parental role and position described in the three balancing acts. CONCLUSIONS: Faced with their child's illness and possible death, older parents experience overwhelming feelings often underestimated by their (close) environment. Nurses need to be susceptible for the needs and experiences of these older parents. For care by nurses to make a difference, their attention must be directed to how older parents can be invigorated in their parenthood while respecting the child's autonomy.

Learning to attain an advanced level of professional responsibility.

BACKGROUND: After graduation, nurse practitioner students are expected to be capable of providing complex, evidence-based nursing care independently, combined with standardized medical care. The students who follow work-study programs have to develop their competencies in a healthcare environment dominated by efficiency policies. OBJECTIVE: This study aims to explore nurse practitioner students' perceptions of their professional responsibility for patient care. METHOD: This qualitative interpretative study entails a content analysis of 46 reflective case studies written by nurse practitioner students. FINDINGS: The students felt responsible for the monitoring of patients' health status, attending to psychosocial problems, emphasizing compliance, and optimizing the family's role as informal caregivers. At the same time, students struggled to understand the complexities of their patients' needs, and they had difficulty applying their knowledge and skills to complex medical, psychological, and social problems. CONCLUSION: The students' perceptions of their new responsibility were characterized by a strong focus on curative care, while psychosocial components of health and illness concerns were often overlooked. The students experienced difficulties in meeting the criteria of advanced practice nursing described in the Dutch competency framework.

The parents' ability to attend to the "voice of their child" with incurable cancer during the palliative phase.

OBJECTIVE: In pediatric oncology, parents want, and are expected, to act and decide in the best interest of their child. A recent qualitative study (PRESENCE study) indicated that parents had difficulty in doing so. The aim of this subanalysis was to describe and offer an explanation for the parents' actions in expressing and handling of "the voice of the child." METHOD: A multicenter, qualitative research study comprising 37 interviews conducted with 34 parents of 17 children with incurable cancer, cared for at home, during the palliative phase. A thematic analysis was conducted. RESULTS: The "voice of the child" becomes manifest in the parents' expressions of the child's needs and perceptions. Parents who actively searched to understand their child's inner perspective used direct and indirect strategies. Parents preferred indirect strategies when their child avoided talking or when they considered the conversation as threatening for the child, or for themselves. Even if the parents show an intense involvement in the care and support of their child; they can still have difficulty acknowledging the child's perspective. An inability to take into account the child's perspective was largely due to the parents' own struggle to cope with loss. CONCLUSIONS: Whether or not the voice of children approaching the end-of- life is heard, often depends on their parents' ability to give them a voice. Professional caregivers have a difficult task in supporting parents in giving their child his or her voice, while at the same time preserving their, and their parents', ability to cope.

The interaction between lived experiences of older patients and their family caregivers confronted with a cancer diagnosis and treatment: a qualitative study.

BACKGROUND: Despite the growing incidence of cancer among older people, little is understood about how older patients and their family caregivers experience receiving a cancer diagnosis and treatment and how their experiences mutually influence each other. Such knowledge is needed to provide meaningful support for both the older person and family caregivers. OBJECTIVES: Exploring lived experiences of older cancer patients, family caregivers and their interaction. DESIGN: Qualitative interview design. SETTING: Six outpatient oncology departments at a University Hospital. PARTICIPANTS: Thirty-two patients (age range 70-86) and 19 family caregivers (age range 42-83). METHODS: Semi-structured interviews with a fairly open framework were conducted and analyzed using the constant comparative method inspired by a grounded theory approach. RESULTS: Older patients and family caregivers experience important demands when confronted with cancer. Patients feel the inherent need to search for hope, and the majority are able to do so by employing coping strategies. Because of their older age, patients anticipate getting a serious illness such as a cancer diagnosis. Family caregivers become 'a family member of an older person with cancer' and feel responsible for the patient's well-being and for providing care. If patients are able to maintain a 'positive' story, family caregivers support this ability. If not, they search for a 'positive' story and point this out to the patient. Most family caregivers perceive their care-giving as a normal process and find it difficult to request professional help for themselves. Nevertheless, knowing that professional help is available whenever they need it reassures them. Overall, life continues during the illness experience: the interaction between patients and family caregivers goes on, their relationship proceeds, the coping and care patterns continue. CONCLUSIONS: The cancer diagnosis has a major impact on patients and family caregivers. This study offers a framework for understanding what is it like to have cancer in old age and outlines the importance of listening actively to the life stories of patients and family caregivers in order to comprehend coping strategies. This may result in better tailored patient-family centered care.

Prevalence of symptoms in older cancer patients receiving palliative care: a systematic review and meta-analysis.

CONTEXT: Symptom control is an essential part of palliative care and important to achieve optimal quality of life. Studies showed that patients with all types of advanced cancer suffer from diverse and often severe symptoms. Research focusing on older persons is scarce because this group is often excluded from studies. Consequently, it is unclear which symptoms older palliative care patients with cancer experience and what is the prevalence of these symptoms. To date, no systematic review has been performed on the prevalence of symptoms in older cancer patients receiving palliative care. OBJECTIVES: The objective of this systematic review was to search and synthesize the prevalence figures of symptoms in older palliative care patients with cancer. METHODS: A systematic search through multiple databases and other sources was conducted from 2002 until April 2012. The methodological quality was evaluated. All steps were performed by two independent reviewers. A meta-analysis was performed to pool the prevalence of symptoms. RESULTS: Seventeen studies were included in this systematic review. Thirty-two symptoms were identified. The prevalence of these symptoms ranged from 3.5% to 77.8%. The most prevalent symptoms were fatigue, excretory symptoms, urinary incontinence, asthenia, pain, constipation, and anxiety and occurred in at least 50% of patients. CONCLUSION: There is a high degree of uncertainty about the reported symptom prevalence because of small sample sizes, high heterogeneity among studies, and the extent of instrument validation. Research based on rigorous methods is needed to allow more conclusive results.

Why shared decision making is not good enough: lessons from patients.

A closer look at the lived illness experiences of medical professionals themselves shows that shared decision making is in need of a logic of care. This paper underlines that medical decision making inevitably takes place in a messy and uncertain context in which sharing responsibilities may impose a considerable burden on patients. A better understanding of patients' lived experiences enables healthcare professionals to attune to what individual patients deem important in their lives.This will contribute to making medical decisions in a good and caring manner, taking into account the lived experience of being ill.

Perspectives of family members on planning end-of-life care for terminally ill and frail older people.

CONTEXT: Advance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process. OBJECTIVES: To gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process. METHODS: This was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory. RESULTS: Family members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns. CONCLUSION: This study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns.

Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study.

BACKGROUND: Owing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care, the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot be fully understood by factors currently known to exacerbate the burden of caregiving. In order to help caregivers reduce the impact of caregiving it is important to gain a deeper understanding of factors influencing the burden and its impact on the caregiver's life. With this in mind, the aim of the study is to explore and understand differences in the impact of long-term caregiving on the quality of life of caregivers who look after older adults with severe mental illness. METHODS: A qualitative, associative, inductive strategy and continuous simultaneous coding were used to interpret the data of 19 semi-structured interviews. RESULTS: We identified an underlying psychological factor "perceived freedom of choice" which explains the gross differences in impact, leading to a definition of two main types of caregivers. Depending on how people perceive freedom of choice to provide care, the consequences of caregiving can be characterized as a process of gain (type 1) or loss (type 2). Four influential factors deepen the impact of caregiving for the type 2 caregivers, and two subtypes are identified for this category. Consequences of caregiving are most readily seen in a deteriorating quality of the relationship with the care recipient and in the psychosocial well-being of the caregiver. CONCLUSIONS: The concept of freedom of choice adds to our understanding of the differences and explains the variation in impact on the caregivers' life. The type 1 caregiver generally experiences gain whereas type 2 generally experiences loss, which puts the latter group typically at risk of becoming overloaded. Whether people perceive that they have freedom of choice in caregiving is an important consideration in evaluating the type of intervention needed to support caregivers.

The investigation of early warning signs of aggression in forensic patients by means of the 'Forensic Early Signs of Aggression Inventory'.

AIMS AND OBJECTIVES: The Forensic Early Warning Signs of Aggression Inventory (FESAI) was developed to assist nurses and patients in identifying early warning signs and constructing individual early detection plans (EDP) for the prevention of aggressive incidents. The aims of this research were as follows: First, to study the prevalence of early warning signs of aggression, measured with the FESAI, in a sample of forensic patients, and second, to explore whether there are any types of warning signs typical of diagnostic subgroups or offender subgroups. BACKGROUND: Reconstructing patients' changes in behaviour prior to aggressive incidents may contribute to identify early warning signs specific to the individual patient. The EDP comprises an early intervention strategy suggested by the patient and approved by the nurses. Implementation of EDP may enhance efficient risk assessment and management. DESIGN: An explorative design was used to review existing records and to monitor frequencies of early warning signs. METHODS: Early detection plans of 171 patients from two forensic hospital wards were examined. Frequency distributions were estimated by recording the early warning signs on the FESAI. Rank order correlation analyses were conducted to compare diagnostic subgroups and offender subgroups concerning types and frequencies of warning signs. RESULTS: The FESAI categories with the highest frequency rank were the following: (1) anger, (2) social withdrawal, (3) superficial contact and (4) non-aggressive antisocial behaviour. There were no significant differences between subgroups of patients concerning the ranks of the four categories of early warning signs. CONCLUSION: The results suggest that the FESAI covers very well the wide variety of occurred warning signs reported in the EDPs. No group profiles of warning signs were found to be specific to diagnosis or offence type. RELEVANCE TO CLINICAL PRACTICE: Applying the FESAI to develop individual EDPs appears to be a promising approach to enhance risk assessment and management.

Advance Care Planning in terminally ill and frail older persons.

OBJECTIVE: Advance Care Planning (ACP) - the communication process by which patients establish goals and preferences for future care - is encouraged to improve the quality of end-of-life care. Gaining insight into the views of elderly on ACP was the aim of this study, as most studies concern younger patients. METHODS: We conducted and analysed 38 semi-structured interviews in elderly patients with limited prognosis. RESULTS: The majority of participants were willing to talk about dying. In some elderly, however, non-acceptance of their nearing death made ACP conversations impossible. Most of the participants wanted to plan those issues of end-of-life care related to personal experiences and fears. They were less interested in planning other end-of-life situations being outside of their power of imagination. Other factors determining if patients proceed to ACP were trust in family and/or physician and the need for control. CONCLUSIONS: ACP is considered important by most elderly. However, there is a risk of pseudo-participation in case of non-acceptance of the nearing death or planning end-of-life situations outside the patient's power of imagination. This may result in end-of-life decisions not reflecting the patient's true wishes. PRACTICE IMPLICATIONS: Before engaging in ACP conversations, physicians should explore if the patient accepts dying as a likely outcome. Also the experiences and fears concerning death and dying, trust and the need for control should be assessed.