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  1. AU="Onwuteaka-Philipsen, Bregje D"
  2. AU="Robert D. Welch"
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  1. Article ; Online: Physicians' views on the role of relatives in euthanasia and physician-assisted suicide decision-making: a mixed-methods study among physicians in the Netherlands.

    Renckens, Sophie C / Onwuteaka-Philipsen, Bregje D / van der Heide, Agnes / Pasman, H Roeline

    BMC medical ethics

    2024  Volume 25, Issue 1, Page(s) 43

    Abstract: Background: Relatives have no formal position in the practice of euthanasia and physician-assisted suicide (EAS) according to Dutch legislation. However, research shows that physicians often involve relatives in EAS decision-making. It remains unclear ... ...

    Abstract Background: Relatives have no formal position in the practice of euthanasia and physician-assisted suicide (EAS) according to Dutch legislation. However, research shows that physicians often involve relatives in EAS decision-making. It remains unclear why physicians do (not) want to involve relatives. Therefore, we examined how many physicians in the Netherlands involve relatives in EAS decision-making and explored reasons for (not) involving relatives and what involvement entails.
    Methods: In a mixed-methods study, 746 physicians (33% response rate) completed a questionnaire, and 20 were interviewed. The questionnaire included two statements on relatives' involvement in EAS decision-making. Descriptive statistics were used, and multivariable logistic regression analyses to explore characteristics associated with involving relatives. In subsequent interviews, we explored physicians' views on involving relatives in EAS decision-making. Interviews were thematically analysed.
    Results: The majority of physicians want to know relatives' opinions about an EAS request (80%); a smaller group also takes these opinions into account in EAS decision-making (35%). Physicians who had ever received an explicit EAS request were more likely to want to know opinions and clinical specialists and elderly care physicians were more likely to take these opinions into account. In interviews, physicians mentioned several reasons for involving relatives: e.g. to give relatives space and help them in their acceptance, to tailor support, to be able to perform EAS in harmony, and to mediate in case of conflicting views. Furthermore, physicians explained that relatives' opinions can influence the decision-making process but cannot be a decisive factor. If relatives oppose the EAS request, physicians find the process more difficult and try to mediate between patients and relatives by investigating relatives' objections and providing appropriate information. Reasons for not taking relatives' opinions into account include not wanting to undermine patient autonomy and protecting relatives from a potential burdensome decision.
    Conclusions: Although physicians know that relatives have no formal role, involving relatives in EAS decision-making is common practice in the Netherlands. Physicians consider this important as relatives need to continue with their lives and may need bereavement support. Additionally, physicians want to perform EAS in harmony with everyone involved. However, relatives' opinions are not decisive.
    MeSH term(s) Humans ; Suicide, Assisted ; Netherlands ; Decision Making ; Euthanasia ; Physicians
    Language English
    Publishing date 2024-04-05
    Publishing country England
    Document type Journal Article
    ZDB-ID 2041552-7
    ISSN 1472-6939 ; 1472-6939
    ISSN (online) 1472-6939
    ISSN 1472-6939
    DOI 10.1186/s12910-024-01031-1
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Patients Who Seek to Hasten Death by Voluntarily Stopping Eating and Drinking: A Qualitative Study.

    Bolt, Eva Elizabeth / Pasman, H Roeline / Onwuteaka-Philipsen, Bregje D

    Annals of family medicine

    2023  Volume 21, Issue 6, Page(s) 534–544

    Abstract: Purpose: Voluntary stopping of eating and drinking (VSED) is a controversial method to hasten death. Little is known about why and how people come to VSED. This study assessed patients' motives, how patients decide on VSED, and the ways in which they ... ...

    Abstract Purpose: Voluntary stopping of eating and drinking (VSED) is a controversial method to hasten death. Little is known about why and how people come to VSED. This study assessed patients' motives, how patients decide on VSED, and the ways in which they prepare for VSED and involve others.
    Methods: We conducted a qualitative study in the Netherlands of 29 patients; 24 started VSED and 19 died. Thirteen patients were included before or during VSED and 16 afterward. We interviewed 17 patients, 18 relatives, and 10 professional caregivers. Inductive ideal-type analysis was used to describe typologies.
    Results: Three patient groups emerged. The first group (12 patients) were older people who felt life was completed, for whom control was important. They prepared well for VSED, but could overlook the need for help and the emotional burden their decision could place on relatives. The second group (11 patients) were older care-dependent patients with a poor quality of life. They sometimes started VSED suddenly, and they relied heavily on (informal) caregivers to prepare and execute their plan. The third group (6 patients) were psychiatric patients with a long-standing but fluctuating death wish, most of whom were younger. They often prepared for VSED in secrecy or started VSED unprepared.
    Conclusions: Patients embarking on a trajectory toward VSED are a very diverse group, with different care needs. Guidance for care during VSED needs to be applicable to all 3 groups.
    MeSH term(s) Humans ; Aged ; Quality of Life ; Qualitative Research ; Netherlands ; Suicide, Assisted
    Language English
    Publishing date 2023-11-27
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2171425-3
    ISSN 1544-1717 ; 1544-1709
    ISSN (online) 1544-1717
    ISSN 1544-1709
    DOI 10.1370/afm.3037
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Euthanasia and Physician-Assisted Suicide in People With an Accumulation of Health Problems Related to Old Age: A Cross-Sectional Questionnaire Study Among Physicians in the Netherlands.

    Kraak-Steenken, Frédérique W M / Renckens, Sophie C / Pasman, H Roeline W / Bosma, Fenne / van der Heide, Agnes / Onwuteaka-Philipsen, Bregje D

    International journal of public health

    2024  Volume 69, Page(s) 1606962

    Abstract: Objectives: ...

    Abstract Objectives:
    MeSH term(s) Humans ; Cross-Sectional Studies ; Female ; Male ; Netherlands ; Suicide, Assisted/statistics & numerical data ; Aged ; Aged, 80 and over ; Surveys and Questionnaires ; Physicians/statistics & numerical data ; Physicians/psychology ; Middle Aged ; Euthanasia/statistics & numerical data
    Language English
    Publishing date 2024-04-18
    Publishing country Switzerland
    Document type Journal Article
    ZDB-ID 2274130-6
    ISSN 1661-8564 ; 1661-8556
    ISSN (online) 1661-8564
    ISSN 1661-8556
    DOI 10.3389/ijph.2024.1606962
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Communication about euthanasia in Dutch nursing homes.

    Rikmenspoel, Marjolein J H T / de Boer, Fijgje / Onwuteaka-Philipsen, Bregje D / Pasman, H Roeline W / Widdershoven, Guy A M

    Death studies

    2024  , Page(s) 1–12

    Abstract: In this research, we explore how competent nursing home residents in the Netherlands experience communication about euthanasia. Interviews were conducted with 15 nursing home residents. Three themes were found during data analysis: 1) The possibility to ... ...

    Abstract In this research, we explore how competent nursing home residents in the Netherlands experience communication about euthanasia. Interviews were conducted with 15 nursing home residents. Three themes were found during data analysis: 1) The possibility to discuss euthanasia; 2) Interaction and 3) Anticipating the future. Whether or not euthanasia was discussed was influenced by the openness of the resident and the accessibility and openness of their medical practitioner. Important factors mentioned by respondents regarding interaction were the level of connectedness with others, the feeling of being understood and one's own firmness in holding on to the option of euthanasia in the future. Regarding anticipating the future, respondents felt reassured in having an advance directive. They expressed a lack of certainty whether the medical practitioner would be willing to eventually perform euthanasia. As a practical implication, ACP may provide a pathway for improvement of communication about euthanasia with competent residents.
    Language English
    Publishing date 2024-04-25
    Publishing country United States
    Document type Journal Article
    ZDB-ID 632596-8
    ISSN 1091-7683 ; 0748-1187
    ISSN (online) 1091-7683
    ISSN 0748-1187
    DOI 10.1080/07481187.2024.2330011
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: The promise of big data for palliative and end-of-life care research.

    Morin, Lucas / Onwuteaka-Philipsen, Bregje D

    Palliative medicine

    2021  Volume 35, Issue 9, Page(s) 1638–1640

    MeSH term(s) Big Data ; Hospice Care ; Humans ; Palliative Care ; Terminal Care
    Language English
    Publishing date 2021-10-12
    Publishing country England
    Document type Editorial
    ZDB-ID 639247-7
    ISSN 1477-030X ; 0269-2163
    ISSN (online) 1477-030X
    ISSN 0269-2163
    DOI 10.1177/02692163211048307
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  6. Article ; Online: Awareness and Actual Knowledge of Palliative Care Among Older People: A Dutch National Survey.

    Bergman, Tessa D / van der Plas, Annicka G M / Pasman, H Roeline W / Onwuteaka-Philipsen, Bregje D

    Journal of pain and symptom management

    2023  Volume 66, Issue 3, Page(s) 193–202.e2

    Abstract: Context: Lack of public knowledge of palliative care may be a barrier to timely use of palliative care and hinder engagement in advance care planning (ACP). Little research has been conducted on (the relationship between) awareness and actual knowledge ... ...

    Abstract Context: Lack of public knowledge of palliative care may be a barrier to timely use of palliative care and hinder engagement in advance care planning (ACP). Little research has been conducted on (the relationship between) awareness and actual knowledge of palliative care.
    Objectives: To determine awareness and actual knowledge of palliative care and explore factors that contribute to knowledge of palliative care among older people.
    Methods: A cross-sectional study in a representative sample of 1242 Dutch people (≥ 65 years; response 93.2%) on whether they had heard of palliative care and knowledge statements about palliative care.
    Results: The majority had heard of the term palliative care (90.1%), and 47.1% reported to know (quite) exactly what it means. Most knew palliative care is not only for people with cancer (73.9%) and is not only provided in hospice facilities (60.6%). A minority knew palliative care can be provided alongside life-prolonging treatment (29.8%) and is not only for people who have a few weeks left to live (23.5%). Experience with palliative care through family, friends and/or acquaintances (range ORs: 1.35-3.39 for the four statements), higher education (ORs: 2.09-4.81), being female (ORs: 1.56-1.91), and higher income (OR: 1.93) were positively associated with one or more statements, while increasing age (ORs: 0.52-0.66) was negatively associated.
    Conclusion: Knowledge of palliative care is limited, stressing the need for population-wide interventions, including information meetings. Attention should be paid to timely attention for palliative care needs. This might stimulate ACP and raise public knowledge of (im) possibilities of palliative care.
    MeSH term(s) Humans ; Female ; Aged ; Male ; Palliative Care ; Cross-Sectional Studies ; Hospice Care ; Hospice and Palliative Care Nursing ; Advance Care Planning
    Language English
    Publishing date 2023-05-18
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 639142-4
    ISSN 1873-6513 ; 0885-3924
    ISSN (online) 1873-6513
    ISSN 0885-3924
    DOI 10.1016/j.jpainsymman.2023.05.005
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: End of life in general practice: trends 2009-2019.

    Bergman, Tessa D / Pasman, H Roeline W / Hendriksen, Janneke Mt / Onwuteaka-Philipsen, Bregje D

    BMJ supportive & palliative care

    2022  

    Abstract: Objectives: To assess possible trends between 2009 and 2019 in the Netherlands of palliative care indicators: the provision of palliative care or treatment, hospitalisations in the last month before death, use of specialised palliative care services and ...

    Abstract Objectives: To assess possible trends between 2009 and 2019 in the Netherlands of palliative care indicators: the provision of palliative care or treatment, hospitalisations in the last month before death, use of specialised palliative care services and place of death.
    Methods: The study design was a repeated retrospective cross-sectional design with questionnaires filled in by general practitioners within a clustered sample of 67 Sentinel practices. Patients whose death was non-sudden, and thus could have received palliative care, between 1 January 2009 and 31 December 2019 were included in the study, resulting in 3121 patients.
    Results: Between 2009 and 2019, there is a significant increase in the number of people who receive palliative care or treatment alongside life-prolonging or curative treatment and the number of people who die at home, while the number of hospitalisations in the last month before death and the number of people dying in hospital shows a significant decrease. However, there is no trend in the involvement of specialised palliative care services or people receiving solely palliative care or treatment.
    Conclusion: This study suggests improvements in end-of-life care provided in primary care in the Netherlands. Trends coincided with increased attention to palliative care both in practice and policy. Yet, there is still considerable room for improvement as there is no significant increase in people solely receiving palliative care or treatment and the involvement of specialised palliative care services.
    Language English
    Publishing date 2022-10-26
    Publishing country England
    Document type Journal Article
    ISSN 2045-4368
    ISSN (online) 2045-4368
    DOI 10.1136/spcare-2022-003609
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  8. Article ; Online: End-of-life treatment preference discussions between older people and their physician before and during the COVID-19 pandemic: cross sectional and longitudinal analyses from the Longitudinal Aging Study Amsterdam.

    Kox, Roosmarijne M K / Pasman, H Roeline W / van der Plas, Annicka G M / Huisman, Martijn / Hoogendijk, Emiel O / Onwuteaka-Philipsen, Bregje D

    BMC geriatrics

    2023  Volume 23, Issue 1, Page(s) 441

    Abstract: Background: COVID-19 could lead to hospitalisation and ICU admission, especially in older adults. Therefore, during the pandemic, it became more important to discuss wishes and preferences, such as older peoples' desire for intensive treatment in a ... ...

    Abstract Background: COVID-19 could lead to hospitalisation and ICU admission, especially in older adults. Therefore, during the pandemic, it became more important to discuss wishes and preferences, such as older peoples' desire for intensive treatment in a hospital in acute situations, or not. This study explores what percentage of Dutch older people aged 75 and over discussed Advance Care Planning (ACP) topics with a physician during the first months of the COVID-19 pandemic and whether this was different in these people before the COVID-19 pandemic.
    Methods: Data of two ancillary data collections of the Longitudinal Aging Study Amsterdam were used: the LASA 75 PLUS study and the LASA COVID-19 study. The latter provided cross sectional data (during COVID-19; n = 428) and longitudinal data came from participants in both studies (before and during COVID-19; n = 219).
    Results: Most older adults had thought about ACP topics during COVID-19 (76,4%), and a minority had also discussed ACP topics with a physician (20.3%). Thinking about ACP topics increased during COVID-19 compared to before COVID-19 in a sample with measurements on both timeframes (82,5% vs 68,0%). Not thinking about ACP topics decreased in the first months of the COVID-pandemic compared to before COVID-19 for all ACP topics together (68.0% vs 82.2%) and each topic separately (hospital 42.0% vs 63.9%; nursing home 36.5% vs 53.3%; treatment options 47.0% vs 62.1%; resuscitation 53.0% vs 70.7%).
    Conclusions: Older people do think about ACP topics, which is an important first step in ACP, and this has increased during COVID-19. However, discussing ACP topics with a physician is still not that common. General practitioners could therefore take the initiative in broaching the subject of ACP. This can for instance be done by organizing information meetings.
    MeSH term(s) Humans ; Aged ; Pandemics ; Cross-Sectional Studies ; COVID-19/epidemiology ; COVID-19/therapy ; Advance Care Planning ; General Practitioners ; Aging ; Death
    Chemical Substances lipid-associated sialic acid
    Language English
    Publishing date 2023-07-18
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2059865-8
    ISSN 1471-2318 ; 1471-2318
    ISSN (online) 1471-2318
    ISSN 1471-2318
    DOI 10.1186/s12877-023-04140-5
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article ; Online: Varying (preferred) levels of involvement in treatment decision-making in the intensive care unit before and during the COVID-19 pandemic: a mixed-methods study among relatives.

    Renckens, Sophie C / Pasman, H Roeline / Jorna, Zina / Klop, Hanna T / Perron, Chantal du / van Zuylen, Lia / Steegers, Monique A H / Ten Tusscher, Birkitt L / van Mol, Margo M C / Vloet, Lilian C M / Onwuteaka-Philipsen, Bregje D

    BMC medical informatics and decision making

    2024  Volume 24, Issue 1, Page(s) 46

    Abstract: Background: In the intensive care unit (ICU) relatives play a crucial role as surrogate decision-makers, since most patients cannot communicate due to their illness and treatment. Their level of involvement in decision-making can affect their ... ...

    Abstract Background: In the intensive care unit (ICU) relatives play a crucial role as surrogate decision-makers, since most patients cannot communicate due to their illness and treatment. Their level of involvement in decision-making can affect their psychological well-being. During the COVID-19 pandemic, relatives' involvement probably changed. We aim to investigate relatives' involvement in decision-making in the ICU before and during the pandemic and their experiences and preferences in this regard.
    Methods: A mixed-methods study among relatives of ICU patients admitted to an ICU before or during the COVID-19 pandemic. Relatives in six ICUs completed a questionnaire (n = 329), including two items on decision-making. These were analysed using descriptive statistics and logistic regression analyses. Subsequently, relatives (n = 24) were interviewed about their experiences and preferences regarding decision-making. Thematic analysis was used for analysing the qualitative data.
    Results: Nearly 55% of the relatives indicated they were at least occasionally asked to be involved in important treatment decisions and of these relatives 97.1% reported to have had enough time to discuss questions and concerns when important decisions were to be made. During the first COVID-19 wave relatives were significantly less likely to be involved in decision-making compared to relatives from pre-COVID-19. The interviews showed that involvement varied from being informed about an already made decision to deliberation about the best treatment option. Preferences for involvement also varied, with some relatives preferring no involvement due to a perceived lack of expertise and others preferring an active role as the patient's advocate. Discussing a patient's quality of life was appreciated by relatives, and according to relatives healthcare professionals also found this valuable. In some cases the preferred and actual involvement was in discordance, preferring either a larger or a smaller role.
    Conclusions: As treatment alignment with a patient's values and preferences and accordance between preferred and actual involvement in decision-making is very important, we suggest that the treatment decision-making process should start with discussions about a patient's quality of life, followed by tailoring the process to relatives' preferences as much as possible. Healthcare professionals should be aware of relatives' heterogeneous and possibly changing preferences regarding the decision-making process.
    MeSH term(s) Humans ; Pandemics ; Quality of Life ; COVID-19 ; Intensive Care Units ; Critical Care ; Family/psychology ; Decision Making
    Language English
    Publishing date 2024-02-12
    Publishing country England
    Document type Journal Article
    ZDB-ID 2046490-3
    ISSN 1472-6947 ; 1472-6947
    ISSN (online) 1472-6947
    ISSN 1472-6947
    DOI 10.1186/s12911-024-02429-y
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  10. Article ; Online: Distress among healthcare providers who provided end-of-life care during the COVID-19 pandemic: a longitudinal survey study (the CO-LIVE study).

    Zee, Masha S / Onwuteaka-Philipsen, Bregje D / Witkamp, Erica / Heessels, Benthe / Goossensen, Anne / Korfage, Ida J / Becqué, Yvonne N / Nierop-van Baalen, Corine / van der Heide, Agnes / Pasman, H Roeline

    BMC palliative care

    2024  Volume 23, Issue 1, Page(s) 134

    Abstract: Introduction: The COVID-19 pandemic had a significant impact on care at the end-of-life due to restrictions and other circumstances such as high workload and uncertainty about the disease. The objective of this study is to describe the degree of various ...

    Abstract Introduction: The COVID-19 pandemic had a significant impact on care at the end-of-life due to restrictions and other circumstances such as high workload and uncertainty about the disease. The objective of this study is to describe the degree of various signs experienced by healthcare providers throughout the first 18 months of the pandemic and to assess what provider's characteristics and care circumstances related to COVID-19 are associated with distress.
    Methods: A longitudinal survey study among healthcare providers from different healthcare settings who provided end-of-life care during the pandemic's first 18 months. Data of four time periods were analyzed using descriptive statistics, logistic regression analysis and Generalized Estimating Equation.
    Results: Of the respondents (n=302) the majority had a nursing background (71.8%) and most worked in a hospital (30.3%). Although reported distress was highest in the first period, during the first wave of COVID-19 pandemic, healthcare providers reported signs of distress in all four time periods. Being more stressed than usual and being regularly exhausted were the most common signs of distress. Healthcare providers working in nursing homes and hospitals were more likely to experience signs of distress, compared to healthcare providers working in hospice facilities, during the whole period of 1.5 years. When HCPs were restricted in providing post-death care, they were more likely to feel more stressed than usual and find their work more often emotionally demanding.
    Conclusion: A substantial amount of healthcare providers reported signs of distress during the first 1.5 years of the COVID-19 pandemic. A cause of distress appears to be that healthcare providers cannot provide the care they desire due the pandemic. Even though the pandemic is over, this remains an important and relevant finding, as high workload can sometimes force healthcare providers to make choices about how they provide care. Given that this can cause prolonged stress and this can lead to burnout (and HCPs leaving their current positions), it is now especially important to continue observing the long term developments of the well-being of our healthcare providers in palliative care and provide timely and adequate support where needed.
    MeSH term(s) Humans ; COVID-19/epidemiology ; COVID-19/psychology ; Longitudinal Studies ; Terminal Care/psychology ; Male ; Female ; Health Personnel/psychology ; Health Personnel/statistics & numerical data ; Adult ; Middle Aged ; Surveys and Questionnaires ; Pandemics ; SARS-CoV-2
    Language English
    Publishing date 2024-05-28
    Publishing country England
    Document type Journal Article
    ZDB-ID 2091556-1
    ISSN 1472-684X ; 1472-684X
    ISSN (online) 1472-684X
    ISSN 1472-684X
    DOI 10.1186/s12904-024-01446-y
    Database MEDical Literature Analysis and Retrieval System OnLINE

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