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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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18. 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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23. 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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24. Physicians’ views on the role of relatives in euthanasia and physician-assisted suicide decision-making:a mixed-methods study among physicians in the Netherlands

Author

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

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 approp

Published
2024

25. Experiences with and needs for aftercare following the death of a loved one in the ICU:a mixed-methods study among bereaved relatives

Author

Renckens, Sophie C., Onwuteaka-Philipsen, Bregje D., Jorna, Zina, Klop, Hanna T., du Perron, Chantal, van Zuylen, Lia, Steegers, Monique A.H., ten Tusscher, Birkitt L., van Mol, Margo M.C., de Ruijter, Wouter, Pasman, H. Roeline, Renckens, Sophie C., Onwuteaka-Philipsen, Bregje D., Jorna, Zina, Klop, Hanna T., du Perron, Chantal, van Zuylen, Lia, Steegers, Monique A.H., ten Tusscher, Birkitt L., van Mol, Margo M.C., de Ruijter, Wouter, and Pasman, H. Roeline

Abstract

Background: Bereaved relatives of intensive care unit (ICU) patients are at increased risk of psychological complaints. Aftercare might help them cope with processing the ICU admission and their loved one’s death. There is little (qualitative) evidence on how bereaved relatives experience aftercare. Also, the COVID-19 pandemic likely impacted aftercare provision. We aim to examine how many relatives in Dutch ICUs received aftercare before and during the pandemic and to qualitatively describe their experiences and needs regarding aftercare. Methods: A mixed-methods study among relatives of patients who died in an ICU before or during the COVID-19 pandemic. Bereaved relatives in six ICUs completed a questionnaire (n = 90), including two items on aftercare. These were analyzed using descriptive statistics and Chi-squared tests. Subsequently, both relatives that received and relatives that did not receive aftercare were interviewed about their experiences and needs regarding aftercare. The interviews were thematically analyzed. Results: After the passing of a loved one, 44% of the relatives were asked by a healthcare professional from the hospital how they were doing, and 26% had had a follow-up conversation. Both happened more often during the first wave of the pandemic than during the second wave or before the pandemic. The most common reason for not having had a follow-up conversation was not knowing about this option (44%), followed by not feeling a need (26%). Regarding the latter, interviewed relatives explained that this would not revive their loved one or that they had already discussed everything they wanted. Relatives who wanted a follow-up conversation, wanted this because this would help them realize the severity of their loved one’s illness, to exchange personal experiences, and/or to thank the ICU team. Those with a follow-up conversation said that they had reviewed the medical course of the admission and/or discussed their (mental) well-being. Conclusi

Published
2024

26. 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

Author

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., 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., and Onwuteaka-Philipsen, Bregje D.

Abstract

BackgroundIn 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.MethodsA 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.ResultsNearly 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.Conclusio

Published
2024

29. 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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31. Perception of the Quality of Communication With Physicians Among Relatives of Dying Residents of Long-term Care Facilities in 6 European Countries: PACE Cross-Sectional Study

Author

Adang, Eddy, Andreasen, Paula, Moore, Danni Collingridge, van Hout, Hein, ten Koppel, Maud, Mammarella, Federica, Mercuri, Martina, Onwuteaka-Philipsen, Bregje D., Pivodic, Lara, Rossi, Paola, Sowerby, Eleanor, Stodolska, Agata, Wichmann, Anne, van der Steen, Jenny T., Vernooij-Dassen, Myrra, the European Association for Palliative Care Onlus, European Forum for Primary Care, Age Platform Europe, Alzheimer Europe, Barańska, Ilona, Kijowska, Violetta, Engels, Yvonne, Finne-Soveri, Harriet, Froggatt, Katherine, Gambassi, Giovanni, Hammar, Teija, Oosterveld-Vlug, Mariska, Payne, Sheila, Van Den Noortgate, Nele, Smets, Tinne, Deliens, Luc, Van den Block, Lieve, and Szczerbińska, Katarzyna

Published
2020
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