Birgit Jaspers

Quality palliative care for cancer and dementia in five European countries: some common challenges

Objectives: There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method: One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results: The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion: These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care.

Attitudes toward active euthanasia among medical students at two German universities

AimThere has been an ongoing debate about a legalisation of active euthanasia (AE) in Germany. Palliative care education in German medical schools seeks to foster and cultivate a negative attitude toward AE, but little is known about its effectiveness in this respect. The aim of this study was to assess attitudes toward AE among students with and without palliative medicine tuition (PMT).MethodsThe link to an anonymised online questionnaire was sent out to 1,092 third, fifth and sixth year medical students (YMS) in August–November 2006 at two German universities: university one (U1) with compulsory and additional optional PMT and university two (U2) without any PMT. Thirteen questions addressed active, passive or indirect euthanasia and physician-assisted suicide (statistic: mean ± SD (range), Wilcoxon, Whitney U Test, significance pu2009<u20090.05).ResultsResponse rate was 17.5%; 59.2% of the questionnaires were returned from U1 and 40.8% from U2; 28.3% of the students were male. Whereas 50% of third YMS at U1 and 36.7% at U2 favoured a legalisation of AE, this was true for 22.4% sixth YMS at U1 and 35.7% at U2. At U1, the number of students who would want to make use of AE for themselves decreased considerably (70%-44.9%) but less at U2; main reasons were ‘unbearable suffering’ and ‘circumstances that lack dignity’. Of all students, 21.1% at U1 and 37.2% at U2 could imagine to perform AE in patients, even though 72.6% at U1 and 78.2% at U2 think its legalisation would promote misuse.ConclusionsThe high proportion of pro-AE attitudes gives reason to reconsider both ‘standard’ and palliative medicine tuition for medical students.

Palliative sedation in Germany: how much do we know? A prospective survey.

BACKGROUNDnLittle is known about the practice of palliative sedation (PS) in Germany. This paper presents an analysis of sedation-related data obtained from the German standardized core documentation system (HOPE) for palliative care patients.nnnMETHODSnHOPE was complemented by an optional module on ethical decision making (EDM) which was pretested in 2004, data was collected in 2005-6 during the annual 3-month census. Data was analyzed descriptively from palliative care units (PCU - representative) and inpatient hospice (H - non-representative control group). Chi(2) test was used to test for differences between the reported data per item and year within one kind of setting (significance level p ≤ 0.05). Free-text entries were categorized inductively.nnnRESULTSnDatasets were obtained for 1,944 patients (P) with EDM. PS was performed in 13.0/11.8% (2005/2006) P in palliative care units (PCU) and 25.5/22.9% in hospices (H). Main reasons for PS in PCU were dyspnea, pain, fear or anxiety, in H reasons were inconsistent, high prevalence of psychosocial reasons. Most PS in PCU and about half of the PS in H were intermittent. Sedated P were younger than non-sedated. Only 7 P received PS after asking for euthanasia. The most used medication was midazolam.nnnCONCLUSIONSnThis study reveals a first insight into the use and practice of PS in German PCU and H. For a more detailed systematic survey into the course of decision-making and procedures, a new complementary optional module on PS is being developed by the HOPE group.

Modelling the landscape of palliative care for people with dementia: a European mixed methods study

BackgroundPalliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made.To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care.DiscussionA generic model of palliative care, into which quality indicators can be embedded. The proposed model includes features deemed important for the systematisation of palliative care for people with dementia. These are: the division of labour amongst practitioners of different disciplines; the structure and function of care planning; the management of rising risk and increasing complexity; boundaries between disease-modifying treatment and palliative care and between palliative and end-of-life care; and the process of bereavement.SummaryThe co-design approach to developing a generic model of palliative care for people with dementia has placed the person needing palliative care within a landscape of services and professional disciplines. This model will be explored further in the intervention phase of the IMPACT project.

Palliative care in developing countries: what are the important issues?

Whereas the number of palliative care services and clinical and educational programmes is increasing rapidly in Western industrialised countries,1 the extent of establishment of urgently needed clinical and educational palliative care programmes in the developing world remains at a dramatically low level.2 The great majority of the world population, however, lives in developing countries. Despite great geographic, ethnic, and socioeconomic diversity health care issues in these regions of the world reflect a number of common features.2–4 Natural disasters and war frequently cause famine leading to relocation and/or death of large numbers of individuals. In addition, low-income populations frequently suffer from chronic malnutrition with consequent long-term health implications. Reasons for limited treatment and care include excessive costs for health care,5,6 insufficient availability, lack of health care professionals, lack of infrastructure, limited research into specific needs, limited academic links and education among health care professionals and structural exclusion of rural areas, mismanagement of resources, misunderstandings, wrong assumptions and false beliefs regarding health issues. Palliative care can be provided using limited resources with minimal infrastructure support. One of the most notable examples is the Neighbourhood Network in Palliative Care (NNPC) in Kerala, India, a grass root level movement in palliative care. It relies on the local community to identify patients in need of help, plan strategies and help them with active support from health care professionals. The service covers a population of more than 15 million. In some districts coverage for patients in need of palliative care has reached to more than 60% of the population compared to a national average of around 1%.7 Unfortunately, some administrative, clinical, and educational leaders in the developing world believe that palliative care is a luxury that cannot be afforded by countries that do not have the means to provide many of the needed basic curative interventions for their population. Nevertheless, in most of the places where NNPC is active, the movement has also been able to convince the local governments to take an active role in the care of the incurable, chronically and terminally ill. Many local governments in the Kerala region are now taking a lead role in NNPC programmes.8–10 It has been observed that the most significant barrier in the development of such programmes is an inflexible, hierarchical, organisational structure with limited input from the grass root levels.11 The socioeconomic realities of low-income regions make it essential that palliative care programmes are able to deliver education, medications and food free of cost to patients and families. It is impossible to expect the great majority of the population to pay or even to be able to travel to areas where care is delivered. Difficult terrain and lack of facilities and resources for transportation make the need for home care services greater in the developing than in the developed world. In Namibia, for example, highly successful programmes for the control of tuberculosis were achieved by tying together directly observed tuberculosis drug therapy with the administration of food to the patient and family which dramatically increased compliance. It also reduced the gastrointestinal side effects of these drugs by allowing patients to take them together with their meals.12 Patients were also encouraged to participate in light work by keeping vegetable gardens that were used for nutrition. This mild exercise had beneficial metabolic effects and major psychological benefits for patients and families. Returning to their communities, patients introduced this method to their neighbours. Programmes like this have a sustainable impact on the quality of life of whole communities. A needs-based holistic approach can be achieved without increasing the necessary expenses of the general, usually curative-oriented health care system. Taking into account the different socioeconomic and social conditions and in order to be successful, palliative care programmes in developing countries will have to be Palliative care in developing countries: what are the important issues?

Identification of the palliative phase in people with dementia: a variety of opinions between healthcare professionals

BackgroundPeople with dementia can benefit from a palliative care approach. Recommendations, such as those of the EAPC have been proposed to strengthen the provision of palliative care for this group of patients. Yet, it remains challenging for professionals to identify when a person with dementia is in need of palliative care.xa0The objective of this study therefore was to explore when professionals in long-term care settings consider a person with dementia in need of palliative care.MethodsTeams with in total 84 professionals working in 13 long-term care settings from 6 countries (France, Germany, Italy, Norway, Poland and the Netherlands) received a case-vignette concerning a person with dementia recently admitted to a nursing home. Teams were asked to discuss when they considered people with dementia eligible for palliative care. The constant comparative method was used to analyse their answers.ResultsThree different time points in the disease trajectory when people with dementia were considered to be eligible for palliative care were extracted: (1) early in the disease trajectory; (2) when signs and symptoms of advanced dementia are present; and (3) from the time point that curative treatment of co-morbidities is futile. Yet, none of these time points was uniformly considered by the professional teams across Europe. In some cases, professionals working in the same nursing home didn’t even reach consensus when considering persons with dementia eligible for palliative care.ConclusionThe results of the study identified that professionals across Europe have different opinions regarding the time point when to consider a person with dementia in need of palliative care.

To what extent are the wishes of a signatory reflected in their advance directive: a qualitative analysis

BackgroundAdvance directives (ADs) are assumed to reflect the patients’ preferences, even if these are not clearly expressed. Research into whether this assumption is correct has been lacking. This study explores to what extent ADs reflect the true wishes of the signatories.MethodsSemi-structured interviews (INT), pretest. Transcribed INT and the contents of ADs were inductively categorised (Mayring) and triangulated. Software: MAXQDA 2007. Participants: Patients receiving palliative care (PPC), healthy (H) and chronically ill (CI) individuals with an AD completed ≥3xa0months prior to recruitment.ResultsBetween 08/2008 and 07/2009, 53 individuals (20xa0H, 17 CI, 16 PPC) were interviewed (mean age 63.2xa0years (55–70 years)), 34% male). Most important (in)consistencies between preferences as expressed in INT compared to ADs included preconditions for termination/rejection of life-sustaining measures, refusal of/demand for medical interventions and the nomination of proxies. Standardized AD forms were rarely tailored to the individual. We found a high tendency to use set phrases, such as want to die with dignity or do not want to suffer/vegetate. Likely events in the course of an existing progressive disease were not covered, even in ADs of PPC close to death.ConclusionsOnly some of the incongruities between verbally expressed preferences and the contents of the AD can be put down to use of standardized forms or lack of medical knowledge. Nevertheless, the non-involvement of a doctor in the process of making an AD must be seen as potentially problematic and seeking medical advice should be promoted by politics and physicians. Standardised forms should encourage amendments and present space for free text entries for all aspects covered. Set phrases need to be defined by the individual to enable them to be translated into a specific course of action.

Did you seek assistance for writing your advance directive? A qualitative study

ZusammenfassungFRAGESTELLUNG: Die Erstellung einer Patientenverfügung ist mit einem hohen Maß an Selbstverantwortung für den Unterzeichner verbunden, muss er doch komplexe medizinische Situationen antizipieren. In der Literatur wird oft auf den Hausarzt als wichtigste Instanz zur Beratung bei Erstellung einer PV verwiesen. Es ist allerdings wenig bekannt darüber, ob sich Verfasser tatsächlich medizinisch beraten lassen und inwieweit auf ärztlicher Seite Bereitschaft zur Beratung vorhanden ist. Ziel der Studie war es herauszufinden ob, von wem und in welcher Form Hilfestellung beim Verfassen der PV geleistet und wie dies begründet wurde. METHODE: Halbstrukturierte Interviews mit Gesunden, chronisch Kranken und Palliativpatienten mit Fragen zur Beratung bei Erstellung der Patientenverfügung; Zeitraum 8/2008–7/2009. Einschlusskriterien: Alter zwischen 55–70 Jahren und Patientenverfügung ≥3 Monate alt. Die Interviews wurden vollständig transkribiert und anhand eines induktiv gebildeten Kategoriensystems analysiert. ERGEBNISSE: Insgesamt 53 Interviews (Gesunde n = 20, chronisch Kranke n = 17, Palliativpatienten n = 16); 18 Probanden waren männlich. Durchschnittsalter: 63.2 ± 4.4 Jahre (Range 55–70 Jahre). Professionelle Beratung erhielten 12 Probanden (Arzt = 2, Krankenschwester = 1, Notar/Anwalt = 8, Selbständiger Berater = 1), weitere 8 Befragte inkludierten Familienmitglieder. In 17 Fällen kannte der behandelnde Arzt die Patientenverfügung des Probanden, 36 Befragte setzten ihren Arzt nicht über das Vorhandensein einer Patientenverfügung in Kenntnis. Kategorien zu Gründen für Inanspruchnahme oder Verzicht auf Beratung waren Vertrauen/Mangel an Vertrauen, Autonomie, Ablehnung und finanzielle Erwägungen. SCHLUSSFOLGERUNGEN: Informationen über medizinische Folgen von Präferenzen für die Versorgung am Lebensende scheinen nicht der Interessensschwerpunkt zu sein, wenn Menschen eine Patientenverfügung verfassen. Autonomie und der Wunsch nach notariell beglaubigten Dokumenten scheinen eine wichtigere Rolle zu spielen. Falls Ärzte eine Rolle bei der Verfassung einer PV ihrer Patienten spielen möchten, sollten sie initiativ auf sie zugehen.SummaryBACKGROUND: The completion of an advanced directive is paired with a high degree of self-responsibility of the signatory. It requires anticipation of probably complex medical situations. In the literature, the family physician is often seen as the most important person for advice when writing an advance directive. But little is known about whether or not patients want to involve medical advisors and to what extent physicians are willing to give advice. The aim of this study was to analyse whether or not individuals approached advisors for the completion of their advance directive, whom they chose and which reasons were given for seeking or foregoing assistance. METHODS: Semi-structured interviews with healthy individuals, chronically ill individuals and patients in palliative care including questions associated with advice for completing an advance directive (8/2008–7/2009). Inclusion criteria: age 55–70 years and advance directive ≥3 months old. The interviews were fully transcribed according to standard transcription rules and analysed applying an inductive category development. RESULTS: Interviews were conducted with 53 probands (healthy n = 20, chronically ill n = 17, palliative care patients n = 16); 18 probands were male. Mean age was 63.2 ± 4.4 years (range 55–70 years). Professional advice was sought by 12 probands (physician = 2, nurse = 1, lawyer/notary = 8, self-employed advisor = 1), another 8 probands included family members. In 17 cases, the physician knew the probands advance directive, 36 probands never told their doctor about its existence. Categories of reasons for seeking or foregoing advice were trust/lack of trust, autonomy, rejection and financial considerations. CONCLUSIONS: Information about the medical implications concerning patient preferences for end-of-life care seems not to be the main focus of interest when individuals write an advance directive. Autonomy and trust into notarially certified documents seem to be more important matters. If family physicians want to have a role in their patients completing of an advance directive, they should proactively get in touch with them.

Pharmacological treatment of constipation in palliative care.

Purpose of reviewThe prevalence of constipation in palliative care patients varies. There is uncertainty about the choice from varying recommendations for pharmacological management of constipation and a varying clinical practice in palliative care settings. The purpose of the review was to evaluate the current recommendations of therapy guidelines and to determine the effectiveness and safety of laxative administration for the management of constipation in palliative care patients. Recent findingsDespite the clinical importance, there are limited data on the efficacy and safety of laxatives in palliative care patients. The social acceptability varies from country to country, but overall, oral laxatives should, where possible, be used in preference. Systemic opioid antagonists, such as naloxone and methylnaltrexone have been studied in few clinical trials. There is a paucity of well designed, prospective, randomized controlled trials with large enough numbers of patients suffering from constipation and treated with pharmacological methods. SummaryThere are limited data available on the conventional pharmacological treatment of constipation in palliative care patients due to insufficient randomized controlled trials. However, subcutaneously administered methylnaltrexone was found to be effective in aiding of laxation and well tolerated with limited or transient side effects in palliative care patients.

Never at ease - family carers within integrated palliative care: a multinational, mixed method study

BackgroundFamily carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services.MethodsFamily carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project “Patient-centred palliative care pathways in advanced cancer and chronic disease” (InSup-C).Semi-structured interviews (nxa0=u2009156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions.ResultsOn average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers’ burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures.ConclusionsData suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the ‘unit of care’ and partner in caregiving, to improve their knowledge about, and access to, and the support available.