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6. Patients Who Seek to Hasten Death by Voluntarily Stopping Eating and Drinking: A Qualitative Study

Author

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

Subjects
Medical research -- Analysis, Medicine, Experimental -- Analysis, Euthanasia -- Analysis, Aged -- Analysis, Palliative treatment -- Analysis, Assisted suicide -- Analysis, Right to die -- Analysis, Medical ethics -- Analysis, Pain -- Care and treatment, Caregivers -- Analysis, Health, Science and technology
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. Key words: voluntarily stopping eating and drinking; VSED; palliative care; pain; suffering; death; aged; aged, 80 and over; elderly; geriatrics; psychiatric illness; end of life; physician-assisted suicide; euthanasia; ethics; primary care, INTRODUCTION Physicians around the world are confronted with patients who want to hasten death by voluntary stopping of eating and drinking (VSED). Studies showed that 46% of Dutch general practitioners [...]

Published
2023
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11. Aftercare Provision for Bereaved Relatives Following Euthanasia or Physician-Assisted Suicide: A Cross-Sectional Questionnaire Study Among Physicians.

Author

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

Subjects
ASSISTED suicide, GENERAL practitioners, LOGISTIC regression analysis, PATIENT aftercare, EMOTIONAL experience
Abstract

Objectives: Relatives of patients who died after euthanasia or physician-assisted suicide (EAS) might need (specific) aftercare. We examined if and how physicians provide aftercare to bereaved relatives of patients who died after EAS, and which patient-, physician- and process characteristics are associated with providing aftercare. Methods: A cross-sectional questionnaire study was conducted among 127 physicians (general practitioners, clinical specialists, and elderly care physicians) in the Netherlands. Associations were examined using multivariable logistic regression analyses. Results: Most physicians had had at least one follow-up conversation with bereaved relatives (77.2%). Clinical specialists less often provided aftercare compared to GPs. Also, aftercare was more often provided when the deceased had a cohabiting partner. Topics addressed during aftercare conversations included looking back on practical aspects of the EAS trajectory, the emotional experience of relatives during the EAS trajectory and relatives' current mental wellbeing. A minority of aftercare conversations led to referral to additional care (6.3%). Conclusion: Aftercare conversations with a physician covering a wide-range of topics are likely to be valuable for all bereaved relatives, and not just for "at risk" populations typically targeted by policies and guidelines. [ABSTRACT FROM AUTHOR]

Published
2024
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13. Potentially Inappropriate Treatments at the End of Life in Nursing Home Residents: Findings From the PACE Cross-Sectional Study in Six European Countries

Author

Gatsolaeva, Yuliana, Miranda, Rose, Pivodic, Lara, Tanghe, Marc, van Hout, Hein, Van Den Noortgate, Nele, Froggatt, Katherine, Pasman, H. Roeline W., Baranska, Ilona, Oosterveld-Vlug, Mariska, Wichmann, Anne B., Engels, Yvonne, Vernooij-Dassen, Myrra, Hockley, Jo, Leppäaho, Suvi, Pautex, Sophie, Bassal, Catherine, Mammarella, Federica, Mercuri, Martina, Rossi, Paola, Segat, Ivan, Stodolska, Agata, Adang, Eddy, Kylänen, Marika, Andreasen, Paula, Kuitunen-Kaija, Outi, Moore, Danni Collingridge, Pac, Agnieszka, Kijowska, Violetta, Ten Koppel, Maud, van der Steen, Jenny T., de Paula, Emilie Morgan, Honinx, Elisabeth, Van den Block, Lieve, Piers, Ruth, Van Kuijk, Sander M.J., Onwuteaka-Philipsen, Bregje D., Payne, Sheila A., Szczerbińska, Katarzyna, Gambassi, Giovanni G., Finne-Soveri, Harriet, Deliens, Luc, and Smets, Tinne

Published
2021
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14. 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.

Author

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

Subjects
ASSISTED suicide, OLD age, PHYSICIANS, EUTHANASIA, CROSS-sectional method, WIDOWHOOD, WIDOWS
Abstract

Objectives: We explored characteristics of people with an accumulation of health problems related to old age requesting euthanasia or physician-assisted suicide (EAS) and identified characteristics associated with granting EAS requests. Methods: We conducted a cross-sectional questionnaire study among Dutch physicians on characteristics of these people requesting EAS (n = 123). Associations between characteristics and granting a request were assessed using logistic regression analyses. Results: People requesting EAS were predominantly >80 years old (82.4%), female (70.0%), widow/widower (71.7%), (partially) care-dependent (76.7%), and had a life expectancy >12 months (68.6%). The most prevalent health problems were osteoarthritis (70.4%) and impaired vision and hearing (53.0% and 40.9%). The most cited reasons to request EAS were physical deterioration (68.6%) and dependence (61.2%). 44.7% of requests were granted. Granting a request was positively associated with care dependence, disability/immobility, impaired vision, osteoporosis, loss of control, suffering without prospect of improvement and a treatment relationship with the physician >12 months. Conclusion: Enhanced understanding of people with an accumulation of health problems related to old age requesting EAS can contribute to the ongoing debate on the permissibility of EAS in people without life-threatening conditions. [ABSTRACT FROM AUTHOR]

Published
2024
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19. Agreement of Nursing Home Staff With Palliative Care Principles: A PACE Cross-sectional Study Among Nurses and Care Assistants in Five European Countries

Author

Gatsolaeva, Yuliana, Miranda, Rose, Pivodic, Lara, Tanghe, Marc, van Hout, Hein, Van Den Noortgate, Nele, Froggatt, Katherine, Onwuteaka-Philipsen, Bregje, Szczerbińska, Katarzyna, Oosterveld-Vlug, Mariska, Wichmann, Anne B., Engels, Yvonne, Vernooij-Dassen, Myrra, Hockley, Jo, Leppäaho, Suvi, Pautex, Sophie, Bassal, Catherine, Mammarella, Federica, Mercuri, Martina, Rossi, Paola, Segat, Ivan, Stodolska, Agata, Adang, Eddy, Andreasen, Paula, Kuitunen-Kaija, Outi, Moore, Danni Collingridge, Pac, Agnieszka, Kijowska, Violetta, Koppel, Maud ten, van der Steen, Jenny T., Morgan de Paula, Emilie, Honinx, Elisabeth, Smets, Tinne, Piers, Ruth, Deliens, Luc, Payne, Sheila, Kylänen, Marika, Barańska, Ilona, Pasman, H. Roeline W., Gambassi, Giovanni, and Van den Block, Lieve

Published
2019
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20. How physicians see nurses’ role in decision-making about life-prolonging treatments in patients with a short life expectancy:An interview study

Author

Arends, Susanne A. M., Thodé, Maureen, Pasman, H. Roeline W., Francke, Anneke L., and Jongerden, Irene P.

Abstract

Objective: Exploring physicians’ views on hospital nurses’ role in decision-making about potentially life-prolonging treatments in patients with a short life expectancy. Methods: A qualitative study using semi-structured interviews with hospital physicians. Data were collected from May to September 2019 and analyzed following principles of thematic analysis. Results: Fifteen physicians working in different hospitals and specialisms participated. Physicians stated that they are responsible for the final decision about potentially life-prolonging treatments. They considered nurses’ role in decision-making to be complementary to the roles of both patients and the physicians themselves, especially when there are doubts or complex situations. Physicians varied in how important they found nurses’ involvement in the decision-making process: some physicians saw the involvement of nurses as “situation-dependent”, while others viewed nurses’ involvement as standard practice. Furthermore, physicians mentioned practical obstacles to involving nurses, like the limited time available to both nurses and physicians themselves. Conclusion: Physicians recognize a complementary role for nurses in decision-making about potentially life-prolonging treatment, especially in cases with doubts or complex situations. Practice implications: Physicians and nurses should engage with each other to make nurses’ involvement less situation-dependent. This inter-professional collaboration regarding decision-making about life-prolonging treatments should be stimulated, supported and maintained.

Published
2023

30. Vierde evaluatie: Wet levensbeëindiging op verzoek en hulp bij zelfdoding

Author

van der Heide, Agnes, Legemaate, J (Johan), Onwuteaka-Philipsen, Bregje D., Bosma, Fenne, van Delden, Hans, Mevis, Paul, Mink, Kelly, Pasman, H. Roeline W., Postma, Liselotte, Renckens, Sophie, van Thiel, Ghislaine, van de Vathorst, Suzanne, Public Health, and Criminal Law

Published
2023

32. Impact of COVID-19 on care at the end of life during the first months of the pandemic from the perspective of healthcare professionals from different settings: a qualitative interview study (the CO-LIVE study)

Author

Zee, Masha S, primary, Bagchus, Lotje, additional, Becqué, Yvonne N, additional, Witkamp, Erica, additional, van der Heide, Agnes, additional, van Lent, Liza G G, additional, Goossensen, Anne, additional, Korfage, Ida J, additional, Onwuteaka-Philipsen, Bregje D, additional, and Pasman, H Roeline, additional

Published
2023
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34. Additional file 2 of Support for relatives in the intensive care unit: lessons from a cross-sectional multicentre cohort study during the COVID-19 pandemic

Author

Renckens, Sophie C., Pasman, H. Roeline, Klop, Hanna T., du Perron, Chantal, van Zuylen, Lia, Steegers, Monique A. H., ten Tusscher, Birkitt L., Abbink, Floor C. H., de Ruijter, Wouter, Vloet, Lilian C. M., Koster, Stephanie C. E., and Onwuteaka-Philipsen, Bregje D.

Abstract

Additional file 2. Differences in experiences and satisfaction for different periods between ICU admission and questionnaire completion.

Published
2023
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35. Additional file 1 of Support for relatives in the intensive care unit: lessons from a cross-sectional multicentre cohort study during the COVID-19 pandemic

Author

Renckens, Sophie C., Pasman, H. Roeline, Klop, Hanna T., du Perron, Chantal, van Zuylen, Lia, Steegers, Monique A. H., ten Tusscher, Birkitt L., Abbink, Floor C. H., de Ruijter, Wouter, Vloet, Lilian C. M., Koster, Stephanie C. E., and Onwuteaka-Philipsen, Bregje D.

Abstract

Additional file 1. Questionnaire (translated).

Published
2023
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43. Moral Challenges of Nurses and Volunteers in Dutch Palliative Care. A Qualitative Study

Author

Bosch, Geerke van den, Schaik, Malene van, Pasman, H Roeline, Janssens, Rien, Widdershoven, Guy, Metselaar, Suzanne, Internal medicine, Ethics, Law & Medical humanities, Public and occupational health, APH - Aging & Later Life, APH - Quality of Care, and APH - Personalized Medicine

Subjects
General Medicine
Abstract

Objective: To identify moral challenges experienced by nurses and volunteers in palliative care. Methods: A qualitative hermeneutic research design was used. Interviews with nurses ( N = 10) and volunteers ( N = 4) working in palliative care, in-home care, and hospice setting. Participants were recruited through maximum variation, a purposive sampling technique. Transcriptions were analyzed using qualitative thematic content analysis and open coding. Results: Two themes were identified, each with three subthemes: theme (A) Moral challenges regarding organizational and professional aspects contained the subthemes (1) dealing with protocols and regulations, (2) different professional perspectives on good care, and (3) limits of professionalism. Theme (B) Moral challenges regarding the patient and their family members contained the subthemes (1) dealing with the patient's wishes, (2) the patient's wish to die, and (3) dealing with family members. Conclusion: Nurses and volunteers working in palliative care are confronted with a wide range of moral challenges. Insight into ‘real-world ethical challenges’ of healthcare providers is important to provide adequate support to nurses and volunteers working in palliative care.

Published
2022

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