Better drug use in advanced disease: an international Delphi study.

Patients with a limited life expectancy use many medications, some of which may be questionable. OBJECTIVES : To identify possible solutions for difficulties concerning medication management and formulate recommendations to improve medication management at the end of life. METHODS : A two-round Delphi study with experts in the field of medication management and end-of-life care (based on ranking in the citation index in Web of Science and relevant publications). We developed a questionnaire with 58 possible solutions for problems regarding medication management at the end of life that were identified in previously performed studies. RESULTS : A total of 42 experts from 13 countries participated. Response rate in the first round was 93%, mean agreement between experts for all solutions was 87 % (range 62%-100%); additional suggestions were given by 51%. The response rate in the second round was 74%. Awareness, education and timely communication about medication management came forward as top priorities for guidelines. In addition, solutions considered crucial by many of the experts were development of a list of inappropriate medications at the end of life and incorporation of recommendations for end-of-life medication management in disease-specific guidelines. CONCLUSIONS : In this international Delphi study, experts reached a high level of consensus on recommendations to improve medication management in end-of-life care. These findings may contribute to the development of clinical practice guidelines for medication management in end-of-life care.

Use of antithrombotics at the end of life: an in-depth chart review study.

BACKGROUND: Antithrombotics are frequently prescribed for patients with a limited life expectancy. In the last phase of life, when treatment is primarily focused on optimizing patients' quality of life, the use of antithrombotics should be reconsidered. METHODS: We performed a secondary analysis of a retrospective review of 180 medical records of patients who had died of a malignant or non-malignant disease, at home, in a hospice or in a hospital, in the Netherlands. All medication prescriptions and clinical notes of patients using antithrombotics in the last three months of life were reviewed manually. We subsequently developed case vignettes based on a purposive sample, with variation in setting, age, gender, type of medication, and underlying disease. RESULTS: In total 60% (n=108) of patients had used antithrombotics in the last three months of life. Of all patients using antithrombotics 33.3 % died at home, 21.3 % in a hospice and 45.4 % in a hospital. In total, 157 antithrombotic prescriptions were registered; 30 prescriptions of vitamin K antagonists, 60 of heparins, and 66 of platelet aggregation inhibitors. Of 51 patients using heparins, 32 only received a prophylactic dose. In 75.9 % of patients antithrombotics were continued until the last week before death. Case vignettes suggest that inability to swallow, bleeding complications or the dying phase were important factors in making decisions about the use of antithrombotics. CONCLUSIONS: Antithrombotics in patients with a life limiting disease are often continued until shortly before death. Clinical guidance may support physicians to reconsider (dis)continuation of antithrombotics and discuss this with the patient.

Physicians' Opinions on Anticoagulant Therapy in Patients with a Limited Life Expectancy.

Patients with a limited life expectancy have an increased risk of thromboembolic and bleeding complications. Anticoagulants are often continued until death, independent of their original indication. We aimed to identify the opinions of physicians about the use of anticoagulants at the end of life. A mixed-method research design was used. A secondary analysis was performed on data from a vignette study and an interview study. Participants included general practitioners and clinical specialists. Physicians varied in their opinions: some would continue and others would stop anticoagulants at the end of life because of the risk of thromboembolic or bleeding complications. The improvement or preservation of patients' quality of life was a reason for both stopping and continuing anticoagulants. Other factors considered in the decision-making were the types of anticoagulant, the indication for which the anticoagulant was prescribed, underlying diseases, and the condition and life expectancy of the patient. Factors that made decision-making difficult were the lack of evidence on either strategy, uncertainty about patients' life expectancy, and the fear of harming patients. Which decision was eventually made seems largely dependent on the choice of the patient. In conclusion, there is a substantial variation in physicians' opinions regarding the use of anticoagulants in patients with a limited life expectancy. Physicians agree that the primary goal of medical care at end of life is the improvement or preservation of patients' quality of life. An important barrier to decision-making is the lack of evidence about the risks and benefits of stopping anticoagulants.

Role of nurses in medication management at the end of life: a qualitative interview study.

BACKGROUND: Patients in the last phase of their lives often use many medications. Physicians tend to lack awareness that reviewing the usefulness of medication at the end of patients' lives is important. The aim of this study is to gain insight into the perspectives of patients, informal caregivers, nurses and physicians on the role of nurses in medication management at the end of life. METHODS: Semi-structured interviews were conducted with patients in the last phase of their lives, in hospitals, hospices and at home; and with their informal caregivers, nurses and physicians. Data were qualitatively analyzed using the constant comparative method. RESULTS: Seventy-six interviews were conducted, with 17 patients, 12 informal caregivers, 15 nurses, 20 (trainee) medical specialists and 12 family physicians. Participants agreed that the role of the nurse in medication management includes: 1) informing, 2) supporting, 3) representing and 4) involving the patient, their informal caregivers and physicians in medication management. Nurses have a particular role in continuity of care and proximity to the patient. They are expected to contribute to a multidimensional assessment and approach, which is important for promoting patients' interest in medication management at the end of life. CONCLUSIONS: We found that nurses can and should play an important role in medication management at the end of life by informing, supporting, representing and involving all relevant parties. Physicians should appreciate nurses' input to optimize medication management in patients at the end of life. Health care professionals should recognize the role the nurses can have in promoting patients' interest in medication management at the end of life. Nurses should be reinforced by education and training to take up this role.

[Sexuality and intercultural communication; stories from a general practice]. / Seksualiteit en interculturele communicatie.

Differences in ethnic background, culture, religion and language can impede communication between physicians and patients about sexuality. At the same time, most people, regardless of age, gender and cultural background, find sexuality an essential part of their lives. Sexual problems have a negative effect on perceived health. Many doctors think that non-Western migrants do not want to talk about sexuality and therefore - wrongly - do not mention this subject. With stories from daily practice, I want to show you that modesty, interest, respect, safety and appropriate information are the starting point for professional communication about sexuality. This is also the case for patients with non-Western ethnic, cultural and religious backgrounds.

What Patients with Mild-to-Moderate Kidney Disease Know, Think, and Feel about Their Disease: An In-Depth Interview Study.

INTRODUCTION: It is unknown what patients in primary care with mild-to-moderate chronic kidney disease (CKD) know, think, and feel about their diagnoses and how they value the information provided. The aim of the study was to explore their knowledge, thoughts, and experiences concerning their CKD and the information given to them. METHOD: Qualitative interview study with patients with mild-to-moderate CKD who know their diagnoses and are treated mainly by family physicians. RESULTS: Four themes arose: CKD literacy, coping with anxiety, prerequisites for self-management, and reciprocity in information provision. The participants filled deficiencies in their CKD knowledge with misconceptions and half-truth about causes, symptoms, and treatment. The anxiety about CKD at the time of diagnosis versus the feeling of irrelevance later on was due to the absence of CKD symptoms and their physicians' minimization of the seriousness of CKD. Participants failed to connect lifestyle and cardiovascular disease with CKD. Not all participants were well informed about the consequences that CKD might have. CKD literacy and willingness to change were both necessary to accept lifestyle changes. Further, the participants felt that it would be helpful when information comes with empathy and is tailored to patients' personal needs. CONCLUSIONS: Patients have various perceptions about their CKD. Exploring these perceptions could help match their needs with better-tailored information. Doctors should be aware that they can deliver inaccurate signals about CKD severity, so that patients fail to realize the potential impact of CKD. This makes them less open to lifestyle changes and improving their self-management.

General practitioners' perspectives on management of early-stage chronic kidney disease: a focus group study.

BACKGROUND: Guideline adherence in chronic kidney disease management is low, despite guideline implementation initiatives. Knowing general practitioners' (GPs') perspectives of management of early-stage chronic kidney disease (CKD) and the applicability of the national interdisciplinary guideline could support strategies to improve quality of care. METHOD: Qualitative focus group study with 27 GPs in the Netherlands. Three analysts open-coded and comparatively analysed the data. Mind-mapping sessions were performed after data-saturation. RESULTS: Five themes emerged: defining CKD, knowledge and awareness, patient-physician interaction, organisation of CKD care and value of the guideline. A key finding was the abstractness of the CKD concept. The GPs expressed various perspectives about defining CKD and interpreting estimated glomerular filtration rates. Views about clinical relevance influenced the decision-making, although factual knowledge seems lacking. Striving to inform well enough without creating anxiety and to explain suitably for the intellectual ability of the patient caused tension in the patient-physician interaction. Integration with cardiovascular disease-management programmes was mentioned as a way of implementing CKD care in the future. The guideline was perceived as a rough guide rather than a leading document. CONCLUSION: CKD is perceived as an abstract rather than a clinical concept. Abstractness plays a role in all formulated themes. Management of CKD patients in primary care is complex and is influenced by physician-bound considerations related to individual knowledge and perception of the importance of CKD. Strategies are needed to improve GPs' understanding of the concept of CKD by education, a holistic approach to guidelines, and integration of CKD care into cardiovascular programmes. TRIAL REGISTRATION: Not applicable.

Medication Discontinuation at the End of Life: A Questionnaire Study on Physicians' Experiences and Opinions.

BACKGROUND: Many patients who are in the last phase of life use multiple medications that are continued until shortly before they ultimately die. Little is known about physicians' opinions and experiences regarding medication discontinuation at the end of patients' lives. OBJECTIVE: To explore physicians' opinions and experiences regarding medication discontinuation during the last phase of life, and to identify factors influencing the continuation of potentially inappropriate medications. DESIGN: Questionnaire study, including a vignette and several statements. SETTING/SUBJECTS: A random sample of general practitioners and clinical specialists working in three regions in the Netherlands that represent more than half of the Dutch population. RESULTS: Questionnaires were returned by 321 physicians (response rate: 37%). The majority of them (73%) agreed with the statement that patients who are in the last phase of life use too many medications. When presented with a vignette of a patient with end-stage COPD with different limited life expectancies, preventive medications would be stopped right early before death. Medications to relieve symptoms would not be stopped or stopped right before death. For medications to treat (chronic) illnesses, there was a huge interphysician variability. All statements about possible reasons why medications are continued in the last phase of life, for example, patients feeling abandoned and lack of time, were agreed upon by a small minority of respondents. CONCLUSIONS: Although physicians agree that patients use too many medications at the end of life, they quite regularly seem to give patients medications for chronic diseases, for which the benefit at the end of life may be debatable. More scientific evidence on whether or not these types of medication might be discontinued in the last phase of life is needed.

Medication Use in the Last Days of Life in Hospital, Hospice, and Home Settings in the Netherlands.

BACKGROUND: The purpose of medication management in the last days of life is to optimize patient's comfort. Little is known about the medication use in the days before death and how this relates to the care setting. OBJECTIVE: To describe medication use in the last week of life for patients dying in hospital, hospice, and home settings in the Netherlands. DESIGN: Retrospective chart review study. SETTING: A convenience sample of patient records from the three settings in three different regions in the Netherlands that cover more than half the country. MEASUREMENTS: Information about medication use in the last week of life of patients who ultimately died an expected death was registered, including type of medication, start and if applicable stop dates, administration routes, and doses. RESULTS: One hundred seventy-nine records were analyzed. Medications most frequently used in the last week of life were analgesics (n = 168, 94.1%) and psycholeptics (n = 150, 84.7%), in particular by hospice patients. The mean number of medications used per patient was nine during day 7 before death and six on the day of dying. On the day of death, 48 (26.8%) patients used a preventive medication. This percentage was highest for patients dying in the hospital or at home. CONCLUSIONS: Patients who die an expected death receive many medications in the last week of life, part of which are preventive medications. Medication management in patients' final days of life can be improved, especially in the hospital and home setting.

Perspectives of patients, close relatives, nurses, and physicians on end-of-life medication management.

ABSTRACTObjective:Our aim was to gain insight into the perspectives of patients, close relatives, nurses, and physicians on medication management for patients with a life expectancy of less than 3 months. METHOD: We conducted an empirical multicenter study with a qualitative approach, including in-depth interviews with patients, relatives, nurses, specialists, and general practitioners (GPs). We used the constant comparative method and ATLAS.ti (v. 7.1) software for our analysis. RESULTS: Saturation occurred after 18 patient cases (76 interviews). Some 5 themes covering 18 categories were identified: (1) priorities in end-of-life care, such as symptom management and maintaining hope; (2) appropriate medication use, with attention to unnecessary medication and deprescription barriers; (3) roles in decision making, including physicians in the lead, relatives' advocacy, and pharmacists as suppliers; (4) organization and communication (e.g., transparency of tasks and end-of-life conversations); and (5) prerequisites about professional competence, accessibility and quality of medical records, and financial awareness. Patients, relatives, nurses, specialists, and GPs varied in their opinions about these themes. SIGNIFICANCE OF RESULTS: This study adds to our in-depth understanding of the complex practice of end-of-life medication management. It provides knowledge about the diversity of the perspectives of patients, close relatives, nurses, and physicians regarding beliefs, attitudes, knowledge, skills, behavior, work setting, the health system, and cultural factors related to the matter. Our results might help to draw an interdisciplinary end-of-life medication management guide aimed at stimulating a multidisciplinary and patient-centered pharmacotherapeutic care approach.

GPs' opinions of health assessment instruments for people with intellectual disabilities: a qualitative study.

BACKGROUND: GPs provide health care to people with intellectual disabilities (ID). People with ID find it difficult to express themselves concerning health-related matters. Applying health assessments is an effective method to reveal health needs, and can play a role in prevention and health promotion. AIM: The aim of this qualitative study was to explore GPs' considerations about applying a health assessment for people with ID. DESIGN AND SETTING: This focus group study was conducted among a selection of Dutch GPs. METHOD: An interview guide was developed. All discussions were audiorecorded and transcribed. Analysis was performed using the framework analysis approach. Two researchers independently applied open coding and identified a thematic framework. This framework and the summaries of views per theme were discussed in the research team. RESULTS: After four focus groups, with 23 GPs, saturation was reached. Three main themes evolved: health assessments in relation to GPs' responsibility; the usefulness and necessity of health assessments; and barriers to using health assessments on people with ID. A health assessment instrument for people with ID can help GPs to focus on certain issues that are not so common in the general population. GPs are motivated to use such a tool if it is scientifically tested, and results in significant health gains. However, GPs identify barriers at the level of GP, patient, and organisation. CONCLUSION: Most GPs in the focus groups consider providing medical care to people with ID their responsibility and indicate that a health assessment instrument could be a valuable tool. In order to deliver good care, they need education and support. Many barriers need to be overcome before a health assessment instrument can be implemented.

Evaluation of nurses' changing perceptions when trained to implement a self-management programme for dual sensory impaired older adults in long-term care: a qualitative study.

OBJECTIVES: To gain insights into the process of nurses' changing perceptions when trained to implement a self-management programme for dual sensory impaired older adults in long-term care, and into the factors that contributed to these changes in their perceptions. DESIGN: Qualitative study alongside a cluster randomised controlled trial. SETTING: 17 long-term care homes spread across the Netherlands. PARTICIPANTS: 34 licensed practical nurses supporting 54 dual sensory impaired older adults. INTERVENTION: A 5-month training programme designed to enable nurses to support the self-management of dual sensory impaired older adults in long-term care. PRIMARY OUTCOMES: Nurses' perceptions on relevance and feasibility of the self-management programme collected from nurses' semistructured coaching diaries over the 5-month training and intervention period, as well as from trainers' reports. RESULTS: Nurses' initial negative perceptions on relevance and feasibility of the intervention changed to positive as nurses better understood the concept of autonomy. Through interactions with older adults and by self-evaluations of the effect of their behaviour, nurses discovered that their usual care conflicted with client autonomy. From that moment, nurses felt encouraged to adapt their behaviour to the older adults' autonomy needs. However, nurses' initial unfamiliarity with conversation techniques required a longer exploration period than planned. Once client autonomy was understood, nurses recommended expanding the intervention as a generic approach to all their clients, whether dual sensory impaired or not. CONCLUSIONS: Longitudinal data collection enabled exploration of nurses' changes in perceptions when moving towards self-management support. The training programme stimulated nurses to go beyond 'protocol thinking', discovering client autonomy and exploring the need for their own behavioural adaptations. Educational programmes for practical nurses should offer more longitudinal coaching of autonomy supportive conversational skills. Intervention programming should acknowledge that change is a process rather than an event, and should include self-evaluations of professional behaviours over a period of time. TRIAL REGISTRATION NUMBER: NCT01217502, Post-results.

Linguistic analysis of face-to-face interviews with patients with an explicit request for euthanasia, their closest relatives, and their attending physicians: the use of modal verbs in Dutch.

BACKGROUND: The literature, field research, and daily practice stress the need for adequate communication in palliative care. Although language is of the utmost importance in communication, linguistic analysis of end-of-life discussions is scarce. AIMS: Our aim is 2-fold: We want to determine what the use of 4 significant Dutch modal verbs expressing volition, obligation, possibility, and permission reveals about the concept of unbearable suffering and about physicians' communicative style. METHODS: We quantitatively (TextStat) and qualitatively (bottom-up approach) analyzed the use of the modal verbs in 15 interviews, with patients requesting euthanasia or physician-assisted suicide, their physicians, and their closest relatives. RESULTS: An essential element of unbearable suffering is the patient's incapacity to perform certain tasks. Further, the physician's preference for particular modal verbs reveals whether his attitude toward patients is more or less patronizing and more or less appreciative. CONCLUSIONS: Linguistic analysis can help medical professionals to better understand their communicative skills, styles, and approach to patients in end-of-life situations. We have shown how linguistic analysis can contribute to a better understanding of physician-patient interaction. Moreover, we have illustrated the usefulness of interdisciplinary research in the medical domain.

Perspectives of decision-making in requests for euthanasia: a qualitative research among patients, relatives and treating physicians in the Netherlands.

BACKGROUND: Euthanasia has been legally performed in the Netherlands since 2002. Respect for patient's autonomy is the underpinning ethical principal. However, patients have no right to euthanasia, and physicians have no obligation to provide it. Although over 3000 cases are conducted per year in the Netherlands, there is little known about how decision-making occurs and no guidance to support this difficult aspect of clinical practice. AIM: To explore the decision-making process in cases where patients request euthanasia and understand the different themes relevant to optimise this decision-making process. DESIGN: A qualitative thematic analysis of interviews with patients making explicit requests for euthanasia, most-involved relative(s) and treating physician. PARTICIPANTS/SETTING: Thirty-two cases, 31 relatives and 28 treating physicians. Settings were patients' and relatives' homes and physicians' offices. RESULTS: Five main themes emerged: (1) initiation of sharing views and values about euthanasia, (2) building relationships as part of the negotiation, (3) fulfilling legal requirements, (4) detailed work of preparing and performing euthanasia and (5) aftercare and closing. CONCLUSIONS: A patient's request for euthanasia entails a complex process that demands emotional work by all participants. It is characterised by an intensive period of sharing information, relationship building and negotiation in order to reach agreement. We hypothesise that making decisions about euthanasia demands a proactive approach towards participants' preferences and values regarding end of life, towards the needs of relatives, towards the burden placed on physicians and a careful attention to shared decision-making. Future research should address the communicational skills professionals require for such complex decision-making.

'Unbearable suffering': a qualitative study on the perspectives of patients who request assistance in dying.

BACKGROUND: One of the objectives of medicine is to relieve patients' suffering. As a consequence, it is important to understand patients' perspectives of suffering and their ability to cope. However, there is poor insight into what determines their suffering and their ability to bear it. PURPOSE: To explore the constituent elements of suffering of patients who explicitly request euthanasia or physician-assisted suicide (EAS) and to better understand unbearable suffering from the patients' perspective. PATIENTS AND METHODS: A qualitative study using in-depth face-to-face interviews was conducted with 31 patients who had requested EAS. The grounded theory approach was used to analyse the data. RESULTS: Medical, psycho-emotional, socio-environmental and existential themes contributed to suffering. Especially fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering. Only patients with a psychiatric (co)diagnosis suffered unbearably all the time. CONCLUSIONS: Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become 'unbearable'. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future.