How palliative care patients' feelings of being a burden to others can motivate a wish to die. Moral challenges in clinics and families.

The article explores the underlying reasons for patients' self-perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview-based study of WTD in patients with advanced cancer and non-cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub-analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self-understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted.

Wishes to die at the end of life and subjective experience of four different typical dying trajectories. A qualitative interview study.

RESEARCH AIMS: The motivations that lead to wishes to die (WTD) in palliative care patients with cancer are relatively well studied. But little is known about WTD in other pathologies and the relation between subjective understandings of dying trajectories and a WTD. We investigated the WTD of palliative patients in four different dying trajectories: neurological diseases, organ failure, frailty due to age, and cancer. STUDY POPULATION: 62 palliative cancer (n = 30) and non-cancer (n = 32) patients (10 neurological disease; 11 organ failure; 11 frailty), their families and health professionals in different palliative care settings (248 interviews). STUDY DESIGN AND METHODS: Qualitative semi-structured interviews. Data analysis through Interpretive Phenomenological Analysis and Grounded Theory. RESULTS: In addition to personal motivations, we found that people dealing with similar trajectories were often confronted with similar questions and concerns due to similar challenges. For four trajectories we show typical patterns, similarities and differences that should be considered when talking with patients about their WTD. These illness-related considerations do not explain the WTD completely, but give important information on the challenges for particular patient groups that might experience a WTD. In all patient groups, there were clear moments that triggered a WTD: for neurological patients it was experiencing breathlessness, high-dependency care, or when considering tube feeding or respiratory support; for persons with organ failure it was an acute burdensome crisis; for patients with cancer after the initial diagnosis, it was the first relapse or the move into advanced palliative care; for elderly frail persons it was the move into care facilities, or the loss of important relationships or capabilities. The feeling of being a burden to others was reported in all patient groups. INTERPRETATION: WTD can be triggered within disease trajectories by specific conditions and transitional points that affect agency and self-understanding. A better understanding of the concerns and challenges of a particular dying trajectory as well as its characteristic trigger points can facilitate early and comprehensive communication about patients' WTD, and the underlying motivations and protective factors.

[Give the due value to the end of life: the systematic underfunding of specialised palliative care in the Swiss DRG system]. / Der Wert des Lebensendes: am Beispiel der Finanzierung der stationären spezialisierten Palliative Care in der Schweiz.

Give the due value to the end of life: the systematic underfunding of specialised palliative care in the Swiss DRG system Abstract. Palliative care is an integral part of modern medicine, improving quality of life, treatment satisfaction, and reducing the costs of care in severe disease. Patients' access should be early, regardless of age, diagnosis and setting, when incurable or advanced disease has been diagnosed. The public expenditure for specialised palliative care units in hospitals can be seen as yardstick for an appropriate palliative care supply, but in Switzerland only a mere fraction of revenues is dedicated to the palliative care units. Every year, 66'000 patients die in Switzerland, 38 % of them in a hospital. Health care costs for the last year of life account for 1.9 billion Swiss francs, but palliative care units receive only estimated 51 million Swiss francs per year. Reasons are a too little number of palliative care units, a systemic underfunding of their services and a fragmentary supply chain for severely ill or dying patients. This leads to ethically conflicting situations for clinicians. They have to deal with shortage of supply and, due to economic reasons, are forced to transfer severely ill or dying patients into inadequate settings. Based on international recommendations, Switzerland is in need of further 500 beds for specialised palliative care (actually 335), and at least 11'000 patients per year need access to a specialised palliative care service (actually about 3'500). Under the actual tariffing system, units for palliative care in hospitals are endangered in their existence. Corrections of the remuneration system are urgently warranted. On the long run, a national legal basis should be elaborated to safeguard adequate palliative care supply for all patients in need and as a base for monitoring, formation and research in palliative care.

Reasons for and Frequency of End-of-Life Hospital Admissions: General Practitioners' Perspective on Reducing End-of-Life Hospital Referrals.

BACKGROUND: Many palliative care patients are admitted to hospital shortly before death even though the acute hospital setting is not considered ideal for end-of-life care (EOLC). OBJECTIVES: This study aimed to evaluate General Practitioners' (GPs') perspective on the frequency of and reasons for hospital referrals of these patients. METHODS: Cross-sectional survey involving a stratified random sample of 2000 GPs in Switzerland in 2014. GP characteristics, frequency and type of end-of-life transfers, reasons for referrals, confidence in EOLC, and regional palliative care provision were assessed. Multivariate regression analysis was performed to identify the variables associated with frequency of hospital referrals at the end of life. RESULTS: The questionnaire was completed by 579 (31%) GPs. Frequent hospital referrals shortly before death were reported by 38%. GPs were less likely to report frequent hospitalizations when they felt confident in palliative care competencies, especially in anticipation of crisis. GPs were more likely to report frequent hospitalizations as being due to relatives' wishes, difficulties in symptom control, inadequate or absent care network, and the expense of palliative care at home. CONCLUSIONS: The results suggest that adequate support of and a care network for palliative patients and their caregivers are crucial for continuous home-based EOLC. Timely recognition of the advanced palliative phase as well as the involvement of well-trained GPs who feel confident in palliative care, together with adequate financial support for outpatient palliative care, might diminish the frequency of transitions shortly before death.

General Practitioners' Attitudes towards Essential Competencies in End-of-Life Care: A Cross-Sectional Survey.

BACKGROUND: Identifying essential competencies in end-of-life care, as well as general practitioners' (GPs) confidence in these competencies, is essential to guide training and quality improvement efforts in this domain. AIM: To determine which competencies in end-of-life care are considered important by GPs, to assess GPs' confidence in these competencies in a European context and their reasons to refer terminally ill patients to a specialist. DESIGN AND SETTING: Cross-sectional postal survey involving a stratified random sample of 2000 GPs in Switzerland in 2014. METHOD: Survey development was informed by a previous qualitative exploration of relevant end-of-life GP competencies. Main outcome measures were GPs' assessment of the importance of and confidence in 18 attributes of end-of-life care competencies, and reasons for transferring care of terminally-ill patients to a specialist. GP characteristics associated with main outcome measures were tested using multivariate regression models. RESULTS: The response rate was 31%. Ninety-nine percent of GPs considered the recognition and treatment of pain as important, 86% felt confident about it. Few GPs felt confident in cultural (16%), spiritual (38%) and legal end-of-life competencies such as responding to patients seeking assisted suicide (35%) although more than half of the respondents regarded these competencies as important. Most frequent reasons to refer terminally ill patients to a specialist were lack of time (30%), better training of specialists (23%) and end-of-life care being incompatible with other duties (19%). In multiple regression analyses, confidence in end-of-life care was positively associated with GPs' age, practice size, home visits and palliative training. CONCLUSIONS: GPs considered non-somatic competencies (such as spiritual, cultural, ethical and legal aspects) nearly as important as pain and symptom control. Yet, few GPs felt confident in these non-somatic competencies. These findings should inform training and quality improvement efforts in this domain, in particular for younger, less experienced GPs.

What a wish to die can mean: reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care.

BACKGROUND: Despite research efforts over recent decades to deepen our understanding of why some terminally ill patients express a wish to die (WTD), there is broad consensus that we need more detailed knowledge about the factors that might influence such a wish. The objective of this study is to explore the different possible motivations and explanations of patients who express or experience a WTD. METHODS: Thirty terminally ill cancer patients, their caregivers and relatives; from a hospice, a palliative care ward in the oncology department of a general hospital, and an ambulatory palliative care service; 116 semi-structured qualitative interviews analysed using a complementary grounded theory and interpretive phenomenological analysis approach. RESULTS: THREE DIMENSIONS WERE FOUND TO BE CRUCIAL FOR UNDERSTANDING AND ANALYSING WTD STATEMENTS: intentions, motivations and social interactions. This article analyses the motivations of WTD statements. Motivations can further be differentiated into (1) reasons, (2) meanings and (3) functions. Reasons are the factors that patients understand as causing them to have or accounting for having a WTD. These reasons can be ordered along the bio-psycho-socio-spiritual model. Meanings describe the broader explanatory frameworks, which explain what this wish means to a patient. Meanings are larger narratives that reflect personal values and moral understandings and cannot be reduced to reasons. Functions describe the effects of the WTD on patients themselves or on others, conscious or unconscious, that might be part of the motivation for a WTD. Nine typical 'meanings' were identified in the study, including "to let death put an end to severe suffering", "to move on to another reality", and - more frequently- "to spare others from the burden of oneself". CONCLUSIONS: The distinction between reasons, meanings and functions allows for a more detailed understanding of the motivation for the WTD statements of cancer patients in palliative care situations. Better understanding is crucial to support patients and their relatives in end-of-life care and decision making. More research is required to investigate the types of motivations for WTD statements, also among non-cancer patients.