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De COM-interventie helpt naasten en verpleegkundigen inzichtelijk te krijgen welke ondersteuning naasten nodig hebben om palliatieve zorg thuis zo lang mogelijk vol te houden.

Hoofdstuk in boek Probleemgeoriënteerd denken in de palliatieve zorg. Sander de Hosson, Sabine Netters, Marieke Ausems, Alexander de Graeff, Daisy Janssen (red.) Uitgeverij De Tijdstroom / Boommedisch. Palliatieve zorg is een belangrijk onderdeel van de beroepsuitoefening van vrijwel elke arts, verpleegkundige of verzorgende en verdient een basisplek in elke medische of verpleegkundige opleiding. Die positie had het in het verleden niet, maar met name in de laatste twee decennia heeft de palliatieve zorg de plaats verworven die het veel langer verdiende. In deze tweede, geheel herziene druk van Probleemgeoriënteerd denken in de palliatieve zorg is er naast de somatische aspecten ook aandacht voor de psychosociale en spirituele domeinen van palliatieve zorg.

Hoofdstuk in boek Probleemgeoriënteerd denken in de palliatieve zorg. Sander de Hosson, Sabine Netters, Marieke Ausems, Alexander de Graeff, Daisy Janssen (red.) Uitgeverij De Tijdstroom / Boommedisch. Palliatieve zorg is een belangrijk onderdeel van de beroepsuitoefening van vrijwel elke arts, verpleegkundige of verzorgende en verdient een basisplek in elke medische of verpleegkundige opleiding. Die positie had het in het verleden niet, maar met name in de laatste twee decennia heeft de palliatieve zorg de plaats verworven die het veel langer verdiende. In deze tweede, geheel herziene druk van Probleemgeoriënteerd denken in de palliatieve zorg is er naast de somatische aspecten ook aandacht voor de psychosociale en spirituele domeinen van palliatieve zorg.

Deze studie richt zich op de vraag of eenheid van taal bijdraagt aan het kunnen reduceren van problemen rondom informatie-uitwisseling binnen een (thuis-)zorgnetwerk. Het onderzoek heeft een focus op een specifieke patiëntendoelgroep welke palliatieve zorg behoeft. Het onderzoek heeftplaatsgevonden binnen een regionale zorgorganisatie in Noordoos-Nederland welke deze type zorg aanbiedt aan de cliënten binnen zowel wooncomplexen als in de eigen woonomgeving.Door de complexiteit van specifieke zorg rondom een individuele cliënt is er een veelvoud aan zorgprofessionals noodzakelijk. Deze zorgprofessionals zien en spreken elkaar niet op regelmatige basis waardoor het uitwisselen van informatie op afstand gebruikelijk is. Het gebruiken van het individueel zorgplan van de cliënt is het instrument dat gebruikt wordt voor de informatieuitwisseling en is de leidraad waar het gaat om het geven van zorg.Communicatie is hier het sleutelwoord waarbij eenheid van taal, het van standaardiseren van terminologieën en begrippen, bij kan dragen aan het mogelijk reduceren van problemen die kunnen onstaan binnen de informatie-uitwisseling tussen de verschillende zorgprofessionals rondom een cliënt.Dit onderzoek geeft aan dat het gebruik van eenheid van taal helpt bij het mogelijk reduceren van problemen rondom informatie-uitwisseling binnen een specialitische (thuis-)zorgorganisatie.

Onderzoeksresultaten masterthesis gepresenteerd 'a predictive model of symptoms on pain in independently living frail elderly in palliative care'

This thesis contributes to the knowledge on the efficacy and cost-utility of eHealth applications stimulating self-management in palliative cancer care, in particular among incurably ill cancer patients and their partners. This knowledge can be used to develop eHealth self-management interventions as part of palliative cancer care, and for their implementation and evaluation. This thesis showed no significant effects of Oncokompas regarding its efficacy and cost-utility among incurably ill cancer patients and their partners. More studies are needed on self-guided behavioral self-management interventions to be able to make a comprehensive and well-founded statement of their role in supporting self-management in palliative cancer care. However, it is important for palliative care services and psycho-oncological care that those services are easily available and accessible, to optimally support incurably ill cancer patients and partners of incurably ill cancer patients with care needs when facing challenges as a result of cancer.

This thesis contributes to the knowledge on the efficacy and cost-utility of eHealth applications stimulating self-management in palliative cancer care, in particular among incurably ill cancer patients and their partners. This knowledge can be used to develop eHealth self-management interventions as part of palliative cancer care, and for their implementation and evaluation. This thesis showed no significant effects of Oncokompas regarding its efficacy and cost-utility among incurably ill cancer patients and their partners. More studies are needed on self-guided behavioral self-management interventions to be able to make a comprehensive and well-founded statement of their role in supporting self-management in palliative cancer care. However, it is important for palliative care services and psycho-oncological care that those services are easily available and accessible, to optimally support incurably ill cancer patients and partners of incurably ill cancer patients with care needs when facing challenges as a result of cancer.

Chapter 1 contains the general introduction of this thesis. It provides an overview of the epidemiology and treatment of cancer and palliative care, and the challenges this disease and its treatment puts on patients and their informal caregivers. Also, life review therapy is introduced, the intervention “Dear Memories” is described, and the main aim and the hypotheses of this dissertation are presented. The main aim of this dissertation is to obtain insight in the efficacy of the structured Life Review Therapy combined with memory specificity training (LRT-MST), named ‘’Dear Memories’’ among incurably ill cancer patients. Chapter 2 presents the study protocol of the randomized controlled trial (RCT) to assess the efficacy of LRT-MST in incurably ill cancer patients and their spouses. Spouses will not receive LRT themselves, but because it was expected that patients will talk about their memories during the intervention period with their spouses, it was hypothesized that LRT may have a positive effect on them as well. Chapter 3 describes a study on the psychometric characteristics of the primary outcome measure in in the RCT: the North-western Ego-integrity Scale (NEIS). It is a questionnaire on ego-integrity (the experience of wholeness and meaning in life, even in spite of negative experiences) and despair (the experience of regret about the life one has led, and feelings of sadness, failure and hopelessness) among cancer patients. It was concluded that the NEIS has good psychometric characteristics to assess ego-integrity and despair among cancer patients. Chapter 4 presents the results of the multicentre randomized controlled trial investigating the efficacy of LRT-MST among incurably ill cancer patients. A total of 107 patients were randomized to the intervention group (LRT-MST; n=55) or waiting-list control group (n=52). Linear mixed models (intention to treat) showed that the course of ego-integrity (not despair) improved significantly over time (p=.007) in the intervention group compared to the waiting-list control group, with moderate, but statistically not significant, effect sizes at T1 (ES=.42) and T2 (ES=.48). This study showed that LRT-MST seems effective to improve ego-integrity among cancer patients in palliative care. Chapter 5 includes the outcomes of a qualitative study which provided more in-depth knowledge on motivation to start with LRT-MST, experiences with LRT-MST, and perceived outcomes of LRT-MST in incurably ill cancer patients. Semi-structured interviews were conducted with 20 cancer patients in palliative care who participated in the RCT. The results of this study are important to further tailor LRT-MST and for development or improvement of other psychological interventions targeting cancer patients in palliative care. Chapter 6 investigated whether Life Review Therapy and Memory Specificity Training (LRT-MST) targeting incurably ill cancer patients, may also have a beneficial effect on caregiving burden, symptoms of anxiety and depression, and posttraumatic growth of the informal caregivers. Many caregivers experienced symptoms of anxiety (56%) and depression (30%). LRT-MST did not improve symptoms of depression and anxiety, negative aspects of caregiver burden or post-traumatic growth. LRT-MST may have a protective effect on self-esteem of informal caregivers (positive aspect of caregiver burden). Chapter 7 provides a general discussion putting the findings of the studies conducted in this dissertation in broader perspective. Also, strengths, limitations, implications for clinical practice and recommendations for future research are provided.

Presentatie gegeven over IPS in de wijk binnen PATZ (palliatieve thuiszorg)-netwerk

A systematic review of 23 studies (Chapter 2) shows that concerns of persons experiencing homelessness were often related to the professionals attitudes and facing serious illness, physical, death and dying. Care needs often involved the attitude of professionals, varying preferences for the involvement of family, and addressing spirituality. Future care preferences varied. Palliative care provision was often hampered by competing priorities, limited insight into the condition, and a lack of palliative care skills among professionals. Palliative care was facilitated by professionals applying a patient-centred approach enhancing spiritual needs, trust and dignity. Training professionals in this approach, and proper organization and accommodation of palliative care were recommended. A semi-structured interview study among 28 spiritual caregivers, street pastors, outreach workers and formerly homeless persons (Chapter 3), shows that stigmatization, characteristics of persons experiencing homelessness, and characteristics of a complex care system are underlying factors explaining the underutilization of care. Person-related barriers to care can be lowered by ensuring personalized care and reciprocal trust between professionals and persons experiencing homelessness. System-related barriers to care can be lowered by the provision of clear information, explanation and communication, quiet facilities, and self-reflecting professionals with patience and enough time. A retrospective medical record study of 61 deceased persons experiencing homelessness in two Dutch shelter-based nursing-care settings (Chapter 4) shows a young age at death, multiple and complex somatic, psychiatric, addiction and social issues, and high symptom burden at the end of life. For 75% of the patients, the end of life was recognized. For 26%, a palliative care team was consulted. The study shows that the end of life was characterized by uncertain prognoses, complicated social circumstances and a high number of transitions. Future improvements concerned interdisciplinary collaboration, more dedicated palliative care facilities and corresponding expertise within shelter settings. A focus group study among nineteen professionals and fifteen severely ill persons experiencing homelessness (Chapter 5) shows that palliative care provision and organization varies between professionals, institutions and cities. Participants expressed that palliative care should at least be characterized by respecting the patient’s autonomy, with trusting relationships between the patient and professional, flexible care, and initiating professionals. A regionally developed consultation intervention, involving a fixed duo of a palliative care professional and a social service professional, was expected to be of added value for both patients and professionals regarding showing respect, collaboration, and knowledge. Training and joint multidisciplinary meetings were expected to be necessary as well. A mixed-methods study with structured questionnaires and semi-structured individual and group interviews with professionals, consultants’ diaries and an implementation diary (Chapter 6) evaluates 34 consultations, 22 multidisciplinary meetings and nine training sessions. Consultations mainly involved palliative care professionals advising social service professionals. Consultation requests were mainly about somatic issues; advice often covered somatic and psychosocial issues. Multidisciplinary meetings were mainly attended by GPs and nurses. Training sessions varied widely in duration and content. Discussed patients were often seriously ill, males, of Dutch origin, residing in 24-hour shelter facilities and aged between 50 and 70. Added value was seen in the collaboration and networks of professionals and improvement of their palliative care competences, and in improving timing and quality of palliative care. Reach (Chapter 7) of the intervention was accomplished by involving social service professionals who were initially involved in the intervention. Regions varied in adoption of the three activities. The intervention was partly implemented according to plan. Professionals in all regions expected to maintain intervention activities in the future. Facilitators lay in the inner setting of the organizations, in characteristics of professionals, and in intervention characteristics. Barriers were identified in the inner setting of the organizations and in intervention characteristics.

A systematic review of 23 studies (Chapter 2) shows that concerns of persons experiencing homelessness were often related to the professionals attitudes and facing serious illness, physical, death and dying. Care needs often involved the attitude of professionals, varying preferences for the involvement of family, and addressing spirituality. Future care preferences varied. Palliative care provision was often hampered by competing priorities, limited insight into the condition, and a lack of palliative care skills among professionals. Palliative care was facilitated by professionals applying a patient-centred approach enhancing spiritual needs, trust and dignity. Training professionals in this approach, and proper organization and accommodation of palliative care were recommended. A semi-structured interview study among 28 spiritual caregivers, street pastors, outreach workers and formerly homeless persons (Chapter 3), shows that stigmatization, characteristics of persons experiencing homelessness, and characteristics of a complex care system are underlying factors explaining the underutilization of care. Person-related barriers to care can be lowered by ensuring personalized care and reciprocal trust between professionals and persons experiencing homelessness. System-related barriers to care can be lowered by the provision of clear information, explanation and communication, quiet facilities, and self-reflecting professionals with patience and enough time. A retrospective medical record study of 61 deceased persons experiencing homelessness in two Dutch shelter-based nursing-care settings (Chapter 4) shows a young age at death, multiple and complex somatic, psychiatric, addiction and social issues, and high symptom burden at the end of life. For 75% of the patients, the end of life was recognized. For 26%, a palliative care team was consulted. The study shows that the end of life was characterized by uncertain prognoses, complicated social circumstances and a high number of transitions. Future improvements concerned interdisciplinary collaboration, more dedicated palliative care facilities and corresponding expertise within shelter settings. A focus group study among nineteen professionals and fifteen severely ill persons experiencing homelessness (Chapter 5) shows that palliative care provision and organization varies between professionals, institutions and cities. Participants expressed that palliative care should at least be characterized by respecting the patient’s autonomy, with trusting relationships between the patient and professional, flexible care, and initiating professionals. A regionally developed consultation intervention, involving a fixed duo of a palliative care professional and a social service professional, was expected to be of added value for both patients and professionals regarding showing respect, collaboration, and knowledge. Training and joint multidisciplinary meetings were expected to be necessary as well. A mixed-methods study with structured questionnaires and semi-structured individual and group interviews with professionals, consultants’ diaries and an implementation diary (Chapter 6) evaluates 34 consultations, 22 multidisciplinary meetings and nine training sessions. Consultations mainly involved palliative care professionals advising social service professionals. Consultation requests were mainly about somatic issues; advice often covered somatic and psychosocial issues. Multidisciplinary meetings were mainly attended by GPs and nurses. Training sessions varied widely in duration and content. Discussed patients were often seriously ill, males, of Dutch origin, residing in 24-hour shelter facilities and aged between 50 and 70. Added value was seen in the collaboration and networks of professionals and improvement of their palliative care competences, and in improving timing and quality of palliative care. Reach (Chapter 7) of the intervention was accomplished by involving social service professionals who were initially involved in the intervention. Regions varied in adoption of the three activities. The intervention was partly implemented according to plan. Professionals in all regions expected to maintain intervention activities in the future. Facilitators lay in the inner setting of the organizations, in characteristics of professionals, and in intervention characteristics. Barriers were identified in the inner setting of the organizations and in intervention characteristics.

A systematic review of 23 studies (Chapter 2) shows that concerns of persons experiencing homelessness were often related to the professionals attitudes and facing serious illness, physical, death and dying. Care needs often involved the attitude of professionals, varying preferences for the involvement of family, and addressing spirituality. Future care preferences varied. Palliative care provision was often hampered by competing priorities, limited insight into the condition, and a lack of palliative care skills among professionals. Palliative care was facilitated by professionals applying a patient-centred approach enhancing spiritual needs, trust and dignity. Training professionals in this approach, and proper organization and accommodation of palliative care were recommended. A semi-structured interview study among 28 spiritual caregivers, street pastors, outreach workers and formerly homeless persons (Chapter 3), shows that stigmatization, characteristics of persons experiencing homelessness, and characteristics of a complex care system are underlying factors explaining the underutilization of care. Person-related barriers to care can be lowered by ensuring personalized care and reciprocal trust between professionals and persons experiencing homelessness. System-related barriers to care can be lowered by the provision of clear information, explanation and communication, quiet facilities, and self-reflecting professionals with patience and enough time. A retrospective medical record study of 61 deceased persons experiencing homelessness in two Dutch shelter-based nursing-care settings (Chapter 4) shows a young age at death, multiple and complex somatic, psychiatric, addiction and social issues, and high symptom burden at the end of life. For 75% of the patients, the end of life was recognized. For 26%, a palliative care team was consulted. The study shows that the end of life was characterized by uncertain prognoses, complicated social circumstances and a high number of transitions. Future improvements concerned interdisciplinary collaboration, more dedicated palliative care facilities and corresponding expertise within shelter settings. A focus group study among nineteen professionals and fifteen severely ill persons experiencing homelessness (Chapter 5) shows that palliative care provision and organization varies between professionals, institutions and cities. Participants expressed that palliative care should at least be characterized by respecting the patient’s autonomy, with trusting relationships between the patient and professional, flexible care, and initiating professionals. A regionally developed consultation intervention, involving a fixed duo of a palliative care professional and a social service professional, was expected to be of added value for both patients and professionals regarding showing respect, collaboration, and knowledge. Training and joint multidisciplinary meetings were expected to be necessary as well. A mixed-methods study with structured questionnaires and semi-structured individual and group interviews with professionals, consultants’ diaries and an implementation diary (Chapter 6) evaluates 34 consultations, 22 multidisciplinary meetings and nine training sessions. Consultations mainly involved palliative care professionals advising social service professionals. Consultation requests were mainly about somatic issues; advice often covered somatic and psychosocial issues. Multidisciplinary meetings were mainly attended by GPs and nurses. Training sessions varied widely in duration and content. Discussed patients were often seriously ill, males, of Dutch origin, residing in 24-hour shelter facilities and aged between 50 and 70. Added value was seen in the collaboration and networks of professionals and improvement of their palliative care competences, and in improving timing and quality of palliative care. Reach (Chapter 7) of the intervention was accomplished by involving social service professionals who were initially involved in the intervention. Regions varied in adoption of the three activities. The intervention was partly implemented according to plan. Professionals in all regions expected to maintain intervention activities in the future. Facilitators lay in the inner setting of the organizations, in characteristics of professionals, and in intervention characteristics. Barriers were identified in the inner setting of the organizations and in intervention characteristics.

A systematic review of 23 studies (Chapter 2) shows that concerns of persons experiencing homelessness were often related to the professionals attitudes and facing serious illness, physical, death and dying. Care needs often involved the attitude of professionals, varying preferences for the involvement of family, and addressing spirituality. Future care preferences varied. Palliative care provision was often hampered by competing priorities, limited insight into the condition, and a lack of palliative care skills among professionals. Palliative care was facilitated by professionals applying a patient-centred approach enhancing spiritual needs, trust and dignity. Training professionals in this approach, and proper organization and accommodation of palliative care were recommended. A semi-structured interview study among 28 spiritual caregivers, street pastors, outreach workers and formerly homeless persons (Chapter 3), shows that stigmatization, characteristics of persons experiencing homelessness, and characteristics of a complex care system are underlying factors explaining the underutilization of care. Person-related barriers to care can be lowered by ensuring personalized care and reciprocal trust between professionals and persons experiencing homelessness. System-related barriers to care can be lowered by the provision of clear information, explanation and communication, quiet facilities, and self-reflecting professionals with patience and enough time. A retrospective medical record study of 61 deceased persons experiencing homelessness in two Dutch shelter-based nursing-care settings (Chapter 4) shows a young age at death, multiple and complex somatic, psychiatric, addiction and social issues, and high symptom burden at the end of life. For 75% of the patients, the end of life was recognized. For 26%, a palliative care team was consulted. The study shows that the end of life was characterized by uncertain prognoses, complicated social circumstances and a high number of transitions. Future improvements concerned interdisciplinary collaboration, more dedicated palliative care facilities and corresponding expertise within shelter settings. A focus group study among nineteen professionals and fifteen severely ill persons experiencing homelessness (Chapter 5) shows that palliative care provision and organization varies between professionals, institutions and cities. Participants expressed that palliative care should at least be characterized by respecting the patient’s autonomy, with trusting relationships between the patient and professional, flexible care, and initiating professionals. A regionally developed consultation intervention, involving a fixed duo of a palliative care professional and a social service professional, was expected to be of added value for both patients and professionals regarding showing respect, collaboration, and knowledge. Training and joint multidisciplinary meetings were expected to be necessary as well. A mixed-methods study with structured questionnaires and semi-structured individual and group interviews with professionals, consultants’ diaries and an implementation diary (Chapter 6) evaluates 34 consultations, 22 multidisciplinary meetings and nine training sessions. Consultations mainly involved palliative care professionals advising social service professionals. Consultation requests were mainly about somatic issues; advice often covered somatic and psychosocial issues. Multidisciplinary meetings were mainly attended by GPs and nurses. Training sessions varied widely in duration and content. Discussed patients were often seriously ill, males, of Dutch origin, residing in 24-hour shelter facilities and aged between 50 and 70. Added value was seen in the collaboration and networks of professionals and improvement of their palliative care competences, and in improving timing and quality of palliative care. Reach (Chapter 7) of the intervention was accomplished by involving social service professionals who were initially involved in the intervention. Regions varied in adoption of the three activities. The intervention was partly implemented according to plan. Professionals in all regions expected to maintain intervention activities in the future. Facilitators lay in the inner setting of the organizations, in characteristics of professionals, and in intervention characteristics. Barriers were identified in the inner setting of the organizations and in intervention characteristics.

Erica Witkamp heeft een rijke staat van dienst in de palliatieve zorg. Ze was onder meer verpleegkundige in de thuiszorg en afdelingshoofd van de Palliatieve Zorg Unit van de Daniel den Hoed Kliniek in Rotterdam. Tegenwoordig werkt ze als onderzoeker bij het Erasmus MC en is ze lector Zorg om Naasten aan de Hogeschool Rotterdam.

Erica Witkamp heeft een rijke staat van dienst in de palliatieve zorg. Ze was onder meer verpleegkundige in de thuiszorg en afdelingshoofd van de Palliatieve Zorg Unit van de Daniel den Hoed Kliniek in Rotterdam. Tegenwoordig werkt ze als onderzoeker bij het Erasmus MC en is ze lector Zorg om Naasten aan de Hogeschool Rotterdam.

Interview Karin den Boer en Berno van Meijel: Psychiatrische patiënten krijgen minder goede levenseindebegeleiding dan de algemene bevolking. Zij zijn hiervoor veelal afhankelijk van ggz-hulpverleners, maar die zijn daar vaak onvoldoende vertrouwd mee. Hogeschool Inholland ontwikkelde vanuit het Centre of Expertise Preventie in Zorg en Welzijn, samen met Amsterdam UMC en NIVEL, een toolkit om ggz-hulpverleners te helpen

Interview Karin den Boer en Berno van Meijel: Psychiatrische patiënten krijgen minder goede levenseindebegeleiding dan de algemene bevolking. Zij zijn hiervoor veelal afhankelijk van ggz-hulpverleners, maar die zijn daar vaak onvoldoende vertrouwd mee. Hogeschool Inholland ontwikkelde vanuit het Centre of Expertise Preventie in Zorg en Welzijn, samen met Amsterdam UMC en NIVEL, een toolkit om ggz-hulpverleners te helpen

Patients in the last phase of life often use many medications until shortly before death. In the last phase of life, the main goal of care is usually no longer prolonging life or curing illness, but relieving suffering. On the one hand, medication can improve the quality of life and dying, but on the other hand, too much or inappropriate medication can harm patients with life-threatening illness. Bregje Huisman’s thesis aims to provide insight into medication use in the last phase of life and decision-making concerning medication use, and formulate recommendations to promote appropriate decision-making. This thesis includes data from a questionnaire study, an interview study, a Delphi study, a mixed method study and a retrospective chart review study from the MEDIcation management in the LAST phase of life (MEDILAST) project. The first part of the thesis presents the insights of health care providers regarding medication use in the last phase of life and the role of the nurse in this process. It shows that physicians agree that patients take too many medications at the end of life, but that they frequently prescribe patients medication for chronic diseases of which the benefit at the end of life is debatable. Results from the interview study indicate that nurses can have a pivotal role in communication and collaboration regarding medication, with patients, informal caregivers and physicians, by informing, supporting, representing and involving the other parties. In the Delphi study, experts reached a high level of consensus on recommendations to improve medication management in end-of-life care, concerning awareness, education and timely communication about medication. In second part, the use of antithrombotics and decision-making regarding antithrombotics are described. Antithrombotics are usually prescribed to improve the prognosis and quality of life of patients by preventing or treating thromboembolic events. At the end of life, its use should be reconsidered because the balance of benefit and harm may change and both bleeding and thromboembolic complications can lead to acute and serious situations. Results in this part show that antithrombotics are often continued until shortly before death. Physicians agree that the primary goal of medical care in the last phase of life is to improve or maintain the patient's quality of life, but whether this requires stopping or continuing an anticoagulant is often a dilemma for physicians. In this thesis a first step towards guidance is proposed for antithrombotic management and for discussing the use of antithrombotics at the end of life with patients. In the third part recommendations for clinical practice and further research are described. There is a need for education in communication and identification of the last phase of life. To optimize medication use in the last phase of life, medication assessment should ideally be incorporated in advance care planning conversations. Thereby, anticipating future problems and death scenarios can contribute to appropriate patient care.

Patients in the last phase of life often use many medications until shortly before death. In the last phase of life, the main goal of care is usually no longer prolonging life or curing illness, but relieving suffering. On the one hand, medication can improve the quality of life and dying, but on the other hand, too much or inappropriate medication can harm patients with life-threatening illness. Bregje Huisman’s thesis aims to provide insight into medication use in the last phase of life and decision-making concerning medication use, and formulate recommendations to promote appropriate decision-making. This thesis includes data from a questionnaire study, an interview study, a Delphi study, a mixed method study and a retrospective chart review study from the MEDIcation management in the LAST phase of life (MEDILAST) project. The first part of the thesis presents the insights of health care providers regarding medication use in the last phase of life and the role of the nurse in this process. It shows that physicians agree that patients take too many medications at the end of life, but that they frequently prescribe patients medication for chronic diseases of which the benefit at the end of life is debatable. Results from the interview study indicate that nurses can have a pivotal role in communication and collaboration regarding medication, with patients, informal caregivers and physicians, by informing, supporting, representing and involving the other parties. In the Delphi study, experts reached a high level of consensus on recommendations to improve medication management in end-of-life care, concerning awareness, education and timely communication about medication. In second part, the use of antithrombotics and decision-making regarding antithrombotics are described. Antithrombotics are usually prescribed to improve the prognosis and quality of life of patients by preventing or treating thromboembolic events. At the end of life, its use should be reconsidered because the balance of benefit and harm may change and both bleeding and thromboembolic complications can lead to acute and serious situations. Results in this part show that antithrombotics are often continued until shortly before death. Physicians agree that the primary goal of medical care in the last phase of life is to improve or maintain the patient's quality of life, but whether this requires stopping or continuing an anticoagulant is often a dilemma for physicians. In this thesis a first step towards guidance is proposed for antithrombotic management and for discussing the use of antithrombotics at the end of life with patients. In the third part recommendations for clinical practice and further research are described. There is a need for education in communication and identification of the last phase of life. To optimize medication use in the last phase of life, medication assessment should ideally be incorporated in advance care planning conversations. Thereby, anticipating future problems and death scenarios can contribute to appropriate patient care.

Patients in the last phase of life often use many medications until shortly before death. In the last phase of life, the main goal of care is usually no longer prolonging life or curing illness, but relieving suffering. On the one hand, medication can improve the quality of life and dying, but on the other hand, too much or inappropriate medication can harm patients with life-threatening illness. Bregje Huisman’s thesis aims to provide insight into medication use in the last phase of life and decision-making concerning medication use, and formulate recommendations to promote appropriate decision-making. This thesis includes data from a questionnaire study, an interview study, a Delphi study, a mixed method study and a retrospective chart review study from the MEDIcation management in the LAST phase of life (MEDILAST) project. The first part of the thesis presents the insights of health care providers regarding medication use in the last phase of life and the role of the nurse in this process. It shows that physicians agree that patients take too many medications at the end of life, but that they frequently prescribe patients medication for chronic diseases of which the benefit at the end of life is debatable. Results from the interview study indicate that nurses can have a pivotal role in communication and collaboration regarding medication, with patients, informal caregivers and physicians, by informing, supporting, representing and involving the other parties. In the Delphi study, experts reached a high level of consensus on recommendations to improve medication management in end-of-life care, concerning awareness, education and timely communication about medication. In second part, the use of antithrombotics and decision-making regarding antithrombotics are described. Antithrombotics are usually prescribed to improve the prognosis and quality of life of patients by preventing or treating thromboembolic events. At the end of life, its use should be reconsidered because the balance of benefit and harm may change and both bleeding and thromboembolic complications can lead to acute and serious situations. Results in this part show that antithrombotics are often continued until shortly before death. Physicians agree that the primary goal of medical care in the last phase of life is to improve or maintain the patient's quality of life, but whether this requires stopping or continuing an anticoagulant is often a dilemma for physicians. In this thesis a first step towards guidance is proposed for antithrombotic management and for discussing the use of antithrombotics at the end of life with patients. In the third part recommendations for clinical practice and further research are described. There is a need for education in communication and identification of the last phase of life. To optimize medication use in the last phase of life, medication assessment should ideally be incorporated in advance care planning conversations. Thereby, anticipating future problems and death scenarios can contribute to appropriate patient care.

Interview Karin den Boer (verpleegkundig specialist Antes en lid kenniskring Inholland) en ongetekende over palliatieve zorg in de GGZ, gepubliceerd in ZonMw nieuwsblad: Mensen met een ernstige psychiatrische stoornis krijgen niet altijd de palliatieve zorg die ze nodig hebben. Daarom is er nu een interventieprogramma dat ondertussen door 3 GGZ-organisaties is getest. Wat zijn de ervaringen van hulpverleners en wat levert het cliënten op?

To design and consolidate a more patient-tailored approach for geriatric fracture patients will require a culture change. The author proposes to regard falls and subsequent fractures in geriatric patients not just as a common pathway of frailty, but rather as an end-stage manifestation of frailty. Although exceptions exist, these fractures should be considered an ill omen and characterize patients who are nearing or who are at the end of life. If care for these patients is to be improved, a shift in thinking is required. Physicians (including surgeons) should learn to better appreciate the complexity of geriatric trauma patients and bring about a culture change in geriatric traumatology. First, surgeons must learn to recognize frail patients and acknowledge that falls and resulting fractures are abnormal. Fractures in the geriatric population are symptoms of a larger set of problems, and merely treating the fracture does not address underlying frailty. Surgeons must also have a rudimentary understanding of geriatrics and palliative care, and be aware of the presence of cognitive impairment and reduced decisional capacity in 20% to 50% of all geriatric fracture patients.22,43,51–53 The most effective way to raise awareness for these aspects of care would be to incorporate them in the curriculum of residency programs. Second, we should aspire to provide more holistic and person-centered care. The first step should be to identify high-risk patients in an early stage and to have goals of care discussions. Ask patients what is important to them and balance benefits and harms of surgery against their goals of care. Palliative care, which may or may not include surgery, should be considered for severely frail patients. Third, we must adopt better preventive medicine strategies. Appropriate screening intervals and criteria are controversial for primary prevention of osteoporotic fractures, but for secondary prevention, all patients over the age of 50 years who suffer a fragility fracture should be screened for osteoporosis.54,55 The secondary prevention of osteoporosis is proven effective, with a low number needed to screen and number needed to treat.56 However, a worldwide care gap remains and only a small minority of patients who suffer an osteoporotic fracture subsequently receive treatment for osteoporosis.55,57 The primary reason for this lack of medical care is often reported to be a lack of understanding on the part of the treating physician regarding the role of osteoporosis as the cause of the fracture.55 Finally, and perhaps most importantly, we must find better ways to work together with our patients. The acute nature of trauma cannot be changed, cognitive impairment cannot be modified easily, and a degree of uncertainty in prognosis will always make medical decision making challenging in the field of geriatric trauma. However, collaboration with our patients may greatly be improved if parts of the decision making process are moved to the non-acute phase. Every older individual (including, but not limited to patients) should be motivated to deliberate on what their goals of care are in case of hospitalization, and to have advance care planning directives in place. To achieve this, awareness campaigns, goals of care discussions in outpatient settings, integration of geriatrics in the residency curriculum, and improved collaboration with primary care and nursing home physicians must all be part of the solution. We must encourage older individuals to think about what their treatment preferences are in case of hospitalization, long before they present to the emergency department. This will be an ambitious undertaking, but it is paramount to the culture change in geriatric traumatology.

To design and consolidate a more patient-tailored approach for geriatric fracture patients will require a culture change. The author proposes to regard falls and subsequent fractures in geriatric patients not just as a common pathway of frailty, but rather as an end-stage manifestation of frailty. Although exceptions exist, these fractures should be considered an ill omen and characterize patients who are nearing or who are at the end of life. If care for these patients is to be improved, a shift in thinking is required. Physicians (including surgeons) should learn to better appreciate the complexity of geriatric trauma patients and bring about a culture change in geriatric traumatology. First, surgeons must learn to recognize frail patients and acknowledge that falls and resulting fractures are abnormal. Fractures in the geriatric population are symptoms of a larger set of problems, and merely treating the fracture does not address underlying frailty. Surgeons must also have a rudimentary understanding of geriatrics and palliative care, and be aware of the presence of cognitive impairment and reduced decisional capacity in 20% to 50% of all geriatric fracture patients.22,43,51–53 The most effective way to raise awareness for these aspects of care would be to incorporate them in the curriculum of residency programs. Second, we should aspire to provide more holistic and person-centered care. The first step should be to identify high-risk patients in an early stage and to have goals of care discussions. Ask patients what is important to them and balance benefits and harms of surgery against their goals of care. Palliative care, which may or may not include surgery, should be considered for severely frail patients. Third, we must adopt better preventive medicine strategies. Appropriate screening intervals and criteria are controversial for primary prevention of osteoporotic fractures, but for secondary prevention, all patients over the age of 50 years who suffer a fragility fracture should be screened for osteoporosis.54,55 The secondary prevention of osteoporosis is proven effective, with a low number needed to screen and number needed to treat.56 However, a worldwide care gap remains and only a small minority of patients who suffer an osteoporotic fracture subsequently receive treatment for osteoporosis.55,57 The primary reason for this lack of medical care is often reported to be a lack of understanding on the part of the treating physician regarding the role of osteoporosis as the cause of the fracture.55 Finally, and perhaps most importantly, we must find better ways to work together with our patients. The acute nature of trauma cannot be changed, cognitive impairment cannot be modified easily, and a degree of uncertainty in prognosis will always make medical decision making challenging in the field of geriatric trauma. However, collaboration with our patients may greatly be improved if parts of the decision making process are moved to the non-acute phase. Every older individual (including, but not limited to patients) should be motivated to deliberate on what their goals of care are in case of hospitalization, and to have advance care planning directives in place. To achieve this, awareness campaigns, goals of care discussions in outpatient settings, integration of geriatrics in the residency curriculum, and improved collaboration with primary care and nursing home physicians must all be part of the solution. We must encourage older individuals to think about what their treatment preferences are in case of hospitalization, long before they present to the emergency department. This will be an ambitious undertaking, but it is paramount to the culture change in geriatric traumatology.