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7. Cardiac organoids do not warrant additional moral scrutiny

Author

Medical Humanities Onderzoek Team 1, Bioethics & Health Humanities, Child Health, Circulatory Health, JC onderzoeksprogramma Methodologie, Regenerative Medicine and Stem Cells, Simons, Jannieke N, van der Graaf, Rieke, van Delden, Johannes Jm, Medical Humanities Onderzoek Team 1, Bioethics & Health Humanities, Child Health, Circulatory Health, JC onderzoeksprogramma Methodologie, Regenerative Medicine and Stem Cells, Simons, Jannieke N, van der Graaf, Rieke, and van Delden, Johannes Jm

Published
2024

8. Getting to Know Your Patient: Content Analysis of Patients' Answers to a Questionnaire for Promoting Person-Centered Care

Author

Neurologen, Brain, Cancer, Medical Humanities Onderzoek Team 1, JC onderzoeksprogramma Methodologie, Regenerative Medicine and Stem Cells, Bergers, Juno Hk, Wessels-Wynia, Hester, Seute, Tatjana, Janssens, Astrid, van Delden, Johannes Jm, Neurologen, Brain, Cancer, Medical Humanities Onderzoek Team 1, JC onderzoeksprogramma Methodologie, Regenerative Medicine and Stem Cells, Bergers, Juno Hk, Wessels-Wynia, Hester, Seute, Tatjana, Janssens, Astrid, and van Delden, Johannes Jm

Published
2024

11. Continuous deep sedation at the end of life:a qualitative interview-study among health care providers on an evolving practice

Author

Heijltjes, Madelon T., van Thiel, Ghislaine Jmw, Rietjens, Judith Ac, van der Heide, Agnes, Hendriksen, Geeske, van Delden, Johannes Jm, Heijltjes, Madelon T., van Thiel, Ghislaine Jmw, Rietjens, Judith Ac, van der Heide, Agnes, Hendriksen, Geeske, and van Delden, Johannes Jm

Abstract

Background:Continuous deep sedation (CDS) can be used for patients at the end of life who suffer intolerably from severe symptoms that cannot be relieved otherwise. In the Netherlands, the use of CDS is guided by an national guideline since 2005. The percentage of patients for whom CDS is used increased from 8% of all patients who died in 2005 to 18% in 2015. The aim of this study is to explore potential causes of the rise in the use of CDS in the Netherlands according to health care providers who have been participating in this practice. Methods: Semi-structured interviews were conducted and thematically analysed. Participants were Dutch health care providers (HCPs), working at patients’ homes, hospices, elderly care facilities and in hospitals and experienced in providing CDS, who were recruited via purposeful sampling. Results: 41 Health care providers participated in an interview. For these HCPs the reason to start CDS is often a combination of symptoms resulting in a refractory state. HCPs indicated that symptoms of non-physical origin are increasingly important in the decision to start CDS. Most HCPs felt that suffering at the end of life is less tolerated by patients, their relatives, and sometimes by HCPs; they report more requests to relieve suffering by using CDS. Some HCPs in our study have experienced increasing pressure to perform CDS. Some HCPs stated that they more often used intermittent sedation, sometimes resulting in CDS. Conclusions: This study provides insight into how participating HCPs perceive that their practice of CDS changed over time. The combination of a broader interpretation of refractory suffering by HCPs and a decreased tolerance of suffering at the end of life by patients, their relatives and HCPs, may have led to a lower threshold to start CDS. Trial registration: The Research Ethics Committee of University Medical Center Utrecht assessed that the study

Published
2023

12. Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning

Author

Korfage, Ida J, Polinder, Suzanne, Preston, Nancy, van Delden, Johannes Jm, Geraerds, Sandra A Jlm, Dunleavy, Lesley, Faes, Kristof, Miccinesi, Guido, Carreras, Giulia, Moeller Arnfeldt, Caroline, Kars, Marijke C, Lippi, Giuseppe, Lunder, Urska, Mateus, Ceu, Pollock, Kristian, Deliens, Luc, Groenvold, Mogens, van der Heide, Agnes, Rietjens, Judith Ac, Korfage, Ida J, Polinder, Suzanne, Preston, Nancy, van Delden, Johannes Jm, Geraerds, Sandra A Jlm, Dunleavy, Lesley, Faes, Kristof, Miccinesi, Guido, Carreras, Giulia, Moeller Arnfeldt, Caroline, Kars, Marijke C, Lippi, Giuseppe, Lunder, Urska, Mateus, Ceu, Pollock, Kristian, Deliens, Luc, Groenvold, Mogens, van der Heide, Agnes, and Rietjens, Judith Ac

Abstract

BACKGROUND: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce.AIM: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries.DESIGN: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators.SETTING/PARTICIPANTS: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion.RESULTS: Patients with a good performance status were underrepresented in the intervention group (p< 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p< 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3).CONCLUSIONS: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established.

Published
2023

13. Continuous deep sedation at the end of life: a qualitative interview-study among health care providers on an evolving practice

Author

Medical Humanities Onderzoek Team 1, UMC Utrecht Holding, Circulatory Health, JC onderzoeksprogramma Methodologie, Regenerative Medicine and Stem Cells, Heijltjes, Madelon T., van Thiel, Ghislaine Jmw, Rietjens, Judith Ac, van der Heide, Agnes, Hendriksen, Geeske, van Delden, Johannes Jm, Medical Humanities Onderzoek Team 1, UMC Utrecht Holding, Circulatory Health, JC onderzoeksprogramma Methodologie, Regenerative Medicine and Stem Cells, Heijltjes, Madelon T., van Thiel, Ghislaine Jmw, Rietjens, Judith Ac, van der Heide, Agnes, Hendriksen, Geeske, and van Delden, Johannes Jm

Published
2023

14. Stimulating solidarity to improve knowledge on medications used during pregnancy: A contribution from the ConcePTION project

Author

Medical Humanities Onderzoek Team 1, Bioethics & Health Humanities, Child Health, Circulatory Health, JC onderzoeksprogramma Methodologie, Data Science & Biostatistiek, Regenerative Medicine and Stem Cells, Hollestelle, Marieke J, van der Graaf, Rieke, Sturkenboom, Miriam Cjm, van Delden, Johannes Jm, Medical Humanities Onderzoek Team 1, Bioethics & Health Humanities, Child Health, Circulatory Health, JC onderzoeksprogramma Methodologie, Data Science & Biostatistiek, Regenerative Medicine and Stem Cells, Hollestelle, Marieke J, van der Graaf, Rieke, Sturkenboom, Miriam Cjm, and van Delden, Johannes Jm

Published
2023

16. Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning

Author

Korfage, Ida J, primary, Polinder, Suzanne, additional, Preston, Nancy, additional, van Delden, Johannes JM, additional, Geraerds, Sandra (A)JLM, additional, Dunleavy, Lesley, additional, Faes, Kristof, additional, Miccinesi, Guido, additional, Carreras, Giulia, additional, Moeller Arnfeldt, Caroline, additional, Kars, Marijke C, additional, Lippi, Giuseppe, additional, Lunder, Urska, additional, Mateus, Ceu, additional, Pollock, Kristian, additional, Deliens, Luc, additional, Groenvold, Mogens, additional, van der Heide, Agnes, additional, and Rietjens, Judith AC, additional

Published
2022
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17. Symptom evolution in the dying

Author

Heijltjes, Madelon T, primary, van Zuylen, Lia, additional, van Thiel, Ghislaine JMW, additional, van Delden, Johannes JM, additional, and van der Heide, Agnes, additional

Published
2022
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23. Requests for euthanasia or assisted suicide of people without (severe) illness

Author

Medical Humanities Onderzoek Team 1, Circulatory Health, JC onderzoeksprogramma Methodologie, Regenerative Medicine and Stem Cells, van den Berg, Vera E, Zomers, Margot L, van Thiel, Ghislaine Jmw, Leget, Carlo Jw, van Delden, Johannes Jm, van Wijngaarden, Els J, Medical Humanities Onderzoek Team 1, Circulatory Health, JC onderzoeksprogramma Methodologie, Regenerative Medicine and Stem Cells, van den Berg, Vera E, Zomers, Margot L, van Thiel, Ghislaine Jmw, Leget, Carlo Jw, van Delden, Johannes Jm, and van Wijngaarden, Els J

Published
2022

24. sj-pdf-2-pmj-10.1177_02692163221142950 – Supplemental material for Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning

Author

Korfage, Ida J, Polinder, Suzanne, Preston, Nancy, van Delden, Johannes JM, Geraerds, Sandra (A)JLM, Dunleavy, Lesley, Faes, Kristof, Miccinesi, Guido, Carreras, Giulia, Moeller Arnfeldt, Caroline, Kars, Marijke C, Lippi, Giuseppe, Lunder, Urska, Mateus, Ceu, Pollock, Kristian, Deliens, Luc, Groenvold, Mogens, van der Heide, Agnes, and Rietjens, Judith AC

Subjects
FOS: Clinical medicine, 111702 Aged Health Care, FOS: Health sciences, 110308 Geriatrics and Gerontology
Abstract

Supplemental material, sj-pdf-2-pmj-10.1177_02692163221142950 for Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning by Ida J Korfage, Suzanne Polinder, Nancy Preston, Johannes JM van Delden, A)JLM Geraerds, Lesley Dunleavy, Kristof Faes, Guido Miccinesi, Giulia Carreras, Caroline Moeller Arnfeldt, Marijke C Kars, Giuseppe Lippi, Urska Lunder, Ceu Mateus, Kristian Pollock, Luc Deliens, Mogens Groenvold, Agnes van der Heide and Judith AC Rietjens in Palliative Medicine

Published
2022
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25. sj-pdf-1-pmj-10.1177_02692163221142950 – Supplemental material for Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning

Author

Korfage, Ida J, Polinder, Suzanne, Preston, Nancy, van Delden, Johannes JM, Geraerds, Sandra (A)JLM, Dunleavy, Lesley, Faes, Kristof, Miccinesi, Guido, Carreras, Giulia, Moeller Arnfeldt, Caroline, Kars, Marijke C, Lippi, Giuseppe, Lunder, Urska, Mateus, Ceu, Pollock, Kristian, Deliens, Luc, Groenvold, Mogens, van der Heide, Agnes, and Rietjens, Judith AC

Subjects
FOS: Clinical medicine, 111702 Aged Health Care, FOS: Health sciences, 110308 Geriatrics and Gerontology
Abstract

Supplemental material, sj-pdf-1-pmj-10.1177_02692163221142950 for Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning by Ida J Korfage, Suzanne Polinder, Nancy Preston, Johannes JM van Delden, A)JLM Geraerds, Lesley Dunleavy, Kristof Faes, Guido Miccinesi, Giulia Carreras, Caroline Moeller Arnfeldt, Marijke C Kars, Giuseppe Lippi, Urska Lunder, Ceu Mateus, Kristian Pollock, Luc Deliens, Mogens Groenvold, Agnes van der Heide and Judith AC Rietjens in Palliative Medicine

Published
2022
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26. sj-pdf-4-pmj-10.1177_02692163221142950 – Supplemental material for Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning

Author

Korfage, Ida J, Polinder, Suzanne, Preston, Nancy, van Delden, Johannes JM, Geraerds, Sandra (A)JLM, Dunleavy, Lesley, Faes, Kristof, Miccinesi, Guido, Carreras, Giulia, Moeller Arnfeldt, Caroline, Kars, Marijke C, Lippi, Giuseppe, Lunder, Urska, Mateus, Ceu, Pollock, Kristian, Deliens, Luc, Groenvold, Mogens, van der Heide, Agnes, and Rietjens, Judith AC

Subjects
FOS: Clinical medicine, 111702 Aged Health Care, FOS: Health sciences, 110308 Geriatrics and Gerontology
Abstract

Supplemental material, sj-pdf-4-pmj-10.1177_02692163221142950 for Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning by Ida J Korfage, Suzanne Polinder, Nancy Preston, Johannes JM van Delden, A)JLM Geraerds, Lesley Dunleavy, Kristof Faes, Guido Miccinesi, Giulia Carreras, Caroline Moeller Arnfeldt, Marijke C Kars, Giuseppe Lippi, Urska Lunder, Ceu Mateus, Kristian Pollock, Luc Deliens, Mogens Groenvold, Agnes van der Heide and Judith AC Rietjens in Palliative Medicine

Published
2022
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27. sj-pdf-5-pmj-10.1177_02692163221142950 – Supplemental material for Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning

Author

Korfage, Ida J, Polinder, Suzanne, Preston, Nancy, van Delden, Johannes JM, Geraerds, Sandra (A)JLM, Dunleavy, Lesley, Faes, Kristof, Miccinesi, Guido, Carreras, Giulia, Moeller Arnfeldt, Caroline, Kars, Marijke C, Lippi, Giuseppe, Lunder, Urska, Mateus, Ceu, Pollock, Kristian, Deliens, Luc, Groenvold, Mogens, van der Heide, Agnes, and Rietjens, Judith AC

Subjects
FOS: Clinical medicine, 111702 Aged Health Care, FOS: Health sciences, 110308 Geriatrics and Gerontology
Abstract

Supplemental material, sj-pdf-5-pmj-10.1177_02692163221142950 for Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning by Ida J Korfage, Suzanne Polinder, Nancy Preston, Johannes JM van Delden, A)JLM Geraerds, Lesley Dunleavy, Kristof Faes, Guido Miccinesi, Giulia Carreras, Caroline Moeller Arnfeldt, Marijke C Kars, Giuseppe Lippi, Urska Lunder, Ceu Mateus, Kristian Pollock, Luc Deliens, Mogens Groenvold, Agnes van der Heide and Judith AC Rietjens in Palliative Medicine

Published
2022
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28. sj-pdf-3-pmj-10.1177_02692163221142950 – Supplemental material for Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning

Author

Korfage, Ida J, Polinder, Suzanne, Preston, Nancy, van Delden, Johannes JM, Geraerds, Sandra (A)JLM, Dunleavy, Lesley, Faes, Kristof, Miccinesi, Guido, Carreras, Giulia, Moeller Arnfeldt, Caroline, Kars, Marijke C, Lippi, Giuseppe, Lunder, Urska, Mateus, Ceu, Pollock, Kristian, Deliens, Luc, Groenvold, Mogens, van der Heide, Agnes, and Rietjens, Judith AC

Subjects
FOS: Clinical medicine, 111702 Aged Health Care, FOS: Health sciences, 110308 Geriatrics and Gerontology
Abstract

Supplemental material, sj-pdf-3-pmj-10.1177_02692163221142950 for Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning by Ida J Korfage, Suzanne Polinder, Nancy Preston, Johannes JM van Delden, A)JLM Geraerds, Lesley Dunleavy, Kristof Faes, Guido Miccinesi, Giulia Carreras, Caroline Moeller Arnfeldt, Marijke C Kars, Giuseppe Lippi, Urska Lunder, Ceu Mateus, Kristian Pollock, Luc Deliens, Mogens Groenvold, Agnes van der Heide and Judith AC Rietjens in Palliative Medicine

Published
2022
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29. sj-pdf-6-pmj-10.1177_02692163221142950 – Supplemental material for Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning

Author

Korfage, Ida J, Polinder, Suzanne, Preston, Nancy, van Delden, Johannes JM, Geraerds, Sandra (A)JLM, Dunleavy, Lesley, Faes, Kristof, Miccinesi, Guido, Carreras, Giulia, Moeller Arnfeldt, Caroline, Kars, Marijke C, Lippi, Giuseppe, Lunder, Urska, Mateus, Ceu, Pollock, Kristian, Deliens, Luc, Groenvold, Mogens, van der Heide, Agnes, and Rietjens, Judith AC

Subjects
FOS: Clinical medicine, 111702 Aged Health Care, FOS: Health sciences, 110308 Geriatrics and Gerontology
Abstract

Supplemental material, sj-pdf-6-pmj-10.1177_02692163221142950 for Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning by Ida J Korfage, Suzanne Polinder, Nancy Preston, Johannes JM van Delden, A)JLM Geraerds, Lesley Dunleavy, Kristof Faes, Guido Miccinesi, Giulia Carreras, Caroline Moeller Arnfeldt, Marijke C Kars, Giuseppe Lippi, Urska Lunder, Ceu Mateus, Kristian Pollock, Luc Deliens, Mogens Groenvold, Agnes van der Heide and Judith AC Rietjens in Palliative Medicine

Published
2022
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33. Symptom evolution in the dying

Author

Heijltjes, Madelon T, van Zuylen, Lia, van Thiel, Ghislaine JMW, van Delden, Johannes JM, and van der Heide, Agnes

Abstract

ObjectiveProvide insight in the prevalence of symptoms in patients who are in the last days of life.MethodsA retrospective descriptive analysis of data on patients who died between 2012 and 2019 at the age of 18 or older in 1 of 20 Dutch healthcare facilities, including hospitals, inpatient hospices and long-term care facilities. We analysed data from 4 hourly registrations in the Care Programme for the Dying Person, to assess for how many patients symptom-related goals of care were not achieved. We looked at the first 4 hours episode after the start of the Care Programme and the last 4 hours episode prior to death.ResultsWe analysed records of 2786 patients. In the first 4 hours episode, at least one symptom-related care goal was not achieved for 28.5%–42.8% of patients, depending on the care setting. In the last 4 hours episode, these percentages were 17.5%–26.9%. Care goals concerning pain and restlessness were most often not achieved: percentages varied from 7.3% to 20.9% for pain and from 9.3% to 21.9% for restlessness.ConclusionsSymptom control at the end of life is not optimal in a substantial minority of patients. Systematic assessment and attention as well as further research on symptom management are of the essence.

Published
2023
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34. CLARIFYING APPEALS TO DIGNITY IN MEDICAL ETHICS FROM AN HISTORICAL PERSPECTIVE

Author

Van der Graaf, Rieke and Van Delden, Johannes Jm

Subjects
Euthanasia, Medical ethics, Biological sciences, Philosophy and religion
Abstract

To purchase or authenticate to the full-text of this article, please visit this link: http://dx.doi.org/10.1111/j.1467-8519.2008.00646.x Byline: RIEKE VAN DER GRAAF (1), JOHANNES JM VAN DELDEN (1) Keywords: conceptual clarification; dignity; euthanasia; history; human dignity; research ethics; respect for autonomy Abstract: ABSTRACT Over the past few decades the concept of (human) dignity has deeply pervaded medical ethics. Appeals to dignity, however, are often unclear. As a result some prefer to eliminate the concept from medical ethics, whereas others try to render it useful in this context. We think that appeals to dignity in medical ethics can be clarified by considering the concept from an historical perspective. Firstly, on the basis of historical texts we propose a framework for defining the concept in medical debates. The framework shows that dignity can occur in a relational, an unconditional, a subjective and a Kantian form. Interestingly, all forms relate to one concept since they have four features in common: dignity refers, in a restricted sense, to the 'special status of human beings'; it is based on essential human characteristics; the subject of dignity should live up to it; and it is a vulnerable concept, it can be lost or violated. We argue that being explicit about the meaning of dignity will prevent dignity from becoming a conversation-stopper in moral debate. Secondly, an historical perspective on dignity shows that it is not yet time to dispose of dignity in medical ethics. At least Kantian and relational dignity can be made useful in medical ethics. Author Affiliation: (1)Julius center for Health Sciences and Primary Care, University Medical center, Utrecht Article note: Rieke van der Graaf, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Huispost STR 6.131, PO Box 85500, 3508 GA Utrecht, Netherlands. E-mail: r.vandergraaf@umcutrecht.nl, Telephone 00 31 88 756 8640, Fax 00 31 88 756 8099

Published
2009

38. Ethical and research governance approval across Europe: Experiences from three European palliative care studies

Author

Preston, Nancy, primary, van Delden, Johannes JM, additional, Ingravallo, Francesca, additional, Hughes, Sean, additional, Hasselaar, Jeroen, additional, van der Heide, Agnes, additional, Van den Block, Lieve, additional, Dunleavy, Lesley, additional, Groot, Marieke, additional, Csikos, Agnes, additional, and Payne, Sheila, additional

Published
2020
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47. Modified informed consent procedure: consent to postponed information. (Education and debate)

Author

Boter, Han, van Delden, Johannes JM, de Haan, Rob J., and Rinkel, Gabriel JE

Subjects
Medical research -- Methods -- Ethical aspects -- Laws, regulations and rules, Medicine, Experimental -- Methods -- Ethical aspects -- Laws, regulations and rules, Human experimentation in medicine -- Methods -- Ethical aspects -- Laws, regulations and rules, Self-experimentation in medicine -- Methods -- Ethical aspects -- Laws, regulations and rules, Informed consent (Medical law) -- Laws, regulations and rules -- Methods, Health, Government regulation, Ethical aspects, Methods, Laws, regulations and rules
Abstract

How do you obtain a valid assessment of subjective outcomes in a trial in which the participants cannot be blinded to the intervention? Bias is inevitable from unblinded patients, but [...]

Published
2003

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