Agnes Van Der Heide
Biographic Data
| ID | 3583635 |
|---|---|
| NAME | Agnes Van Der Heide |
| GIVEN NAMES | Agnes |
| FAMILY NAME | Van Der Heide |
| SIGNATURE | VAN DER HEIDE A |
| AFFILIATIONS | Erasmus MC |
| ORCID | 0000-0001-5584-4305 |
| VERIFIED | Yes |
| TOTAL WORKS | 35 |
| TOTAL CITATIONS | 31 |
| AUTHOR COUNT | 35 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 2005 |
| LATEST PUBLICATION YEAR | 2026 |
| H-INDEX | 3 |
End-of-life decision-making: A cross-sectional study on knowledge and views of the Dutch general public
Physician-assisted dying (PAD) has been legal in the Netherlands since 2002. We examined public knowledge of PAD regulation and views on self-determination at the end of life. A cross-sectional survey among citizens aged ≥16 (N = 1,456) included 10 knowledge items and 18 statements on termination of life on request. Knowledge scores were calculated; exploratory factor analysis and linear regressions examined underlying constructs and associations…
Experiences with an Advance Care Planning Intervention for Children with Life-Limiting Conditions: A Qualitative Study of Families and Clinicians Using the IMplementing Pediatric Advance Care Planning…
Background: Advance care planning is a strategy to define goals and preferences for future care and treatment aligned to patient values. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT) provides a holistic, family-oriented approach to involve families of children with life-limiting conditions and their clinicians in ACP, starting early in disease trajectories. This study explores how children with life-limiting conditions, and th…
End-of-life care decision-making from perspectives of patients, family members and healthcare professionals in 10 countries: A qualitative study within the iLive project
Patients and families facing the end of life deal with constant health changes, making their ongoing involvement in care decisions vital yet often overlooked. The iLIVE project conducted a qualitative study across 10 countries, exploring the experiences of patients, family members, and healthcare professionals, enabling a comprehensive exploration of the experiences of end-of-life decision-making. The findings suggest that common emotionally driv…
Dealing With Temporality in Patients With Life-Limiting Disease: An International Qualitative Study
The prospect of death influences people's thoughts about and how they deal with their remaining time. We aimed to understand whether patients with progressive, life-limiting diseases are oriented in the past, present, or future and how they deal with temporality. We conducted 57 in-depth interviews with end-of-life patients in 10 countries using thematic analysis at three levels (i.e., locally in three countries, with codes shared in the three-co…
Experiences and perceptions of continuous deep sedation: An interview study among Dutch patients and relatives
BACKGROUND: The incidence of continuous deep sedation (CDS) has more than doubled over the last decade in The Netherlands, while reasons for this increase are not fully understood. Patients and relatives have an essential role in deciding on CDS. We hypothesize that the increase in CDS practice is related to the changing role of patients and relatives in deciding on CDS. OBJECTIVE: To describe perceptions and experiences of patients and relatives…
The Dutch practice of euthanasia and assisted suicide in patients suffering from psychiatric disorders: A qualitative case review study
Not applicable
Patient and family caregiver perspectives of Advance Care Planning: Qualitative findings from the Action cluster randomised controlled trial of an adapted respecting choices intervention
Advance Care Planning (ACP) is widely regarded as a component of good end-of-life care. However, findings from a qualitative international study of patient and family caregiver attitudes and preferences regarding ACP highlight participants’ ambivalence towards confronting the future and the factors underlying their motivation to accept or defer anticipatory planning. They show how ACP impacts on, and can be determined by, relationships between pa…
Potentially Inappropriate End of Life Care and Healthcare Costs in the Last 30 Days of Life in Regions Providing Integrated Palliative Care in the Netherlands: A Registration-based Study
This study shows less potentially inappropriate end-of-life care and a shift in healthcare costs from hospital to general practitioner and home care with IPC
Death rituals and quality of life of bereaved relatives during the Covid-19 pandemic: Results of the observational CO-Live study
Grief is a normal reaction after the death of a loved one. Death rituals are an integral part of the mourning processes. Not being able to carry out death rituals can affect relatives' quality of life. The aim was to evaluate death rituals during COVID-19 and their association with relatives' quality of life. In a Swedish nation-wide study relatives to persons who died during the COVID-19-pandemic received questionnaires about their quality of li…
Closing the Gap: Multidisciplinary Coordination of a Care Plan for Patients with Multimorbidity
Introduction: Multidisciplinary communication and collaboration are of utmost importance in order to transition from fragmented and disease-centered care to patient-centered care for people with multimorbidity. Interdisciplinary coordination of a care plan is a vital part of this collaboration, yet can take many different forms. Our primary aim is to uncover the existing pathways of multidisciplinary communication and collaboration to reach an in…
Meaning-making following loss among bereaved spouses during the Covid-19 pandemic (the CO-Live study)
This study investigates how individuals construe, understand, and make sense of experiences during the first wave of the COVID-19 pandemic. Seventeen semi-structured interviews were conducted with bereaved spouses focusing on meaning attribution to the death of their partner. The interviewees were lacking adequate information, personalized care, and physical or emotional proximity; these challenges complicated their experience of a meaningful dea…
Newspaper coverage of advance care planning during the Covid-19 pandemic: Content analysis
COVID-19 may cause sudden serious illness, and relatives having to act on patients' behalf, emphasizing the relevance of advance care planning (ACP). We explored how ACP was portrayed in newspapers during year one of the pandemic. In 'LexisNexis Uni', we identified English-language newspaper articles about ACP and COVID-19, published January-November 2020. We applied content analysis; unitizing, sampling, recording or coding, reducing, inferring,…
Relatives’ grief at three moments after death of a loved one during Covid-19 pandemic (the CO-Live study)
COVID-19 has complicated grieving experiences. Rich qualitative description of these experiences is lacking. We interviewed 10 bereaved relatives (mainly daughters) 2-3 times each: shortly after their relative died in the first wave of COVID-19 pandemic, and after 12 and 18 months (29 interviews in total). Analyses took place according to inductive content analysis. Losses were threefold: the loss of the loved one; of the (desired) way to say far…
Prediction Models for Future High-Need High-Cost Healthcare Use as Part of Case-Finding for Care-Management: A Systematic Review
Dying during the Covid-19 Pandemic in Sweden: Relatives’ Experiences of End-of-Life Care (the CO-Live Study)
Background: The COVID-19 pandemic has seen many deaths, but the majority were for causes other than COVID-19. However, end-of-life care in all settings has been affected by measures limiting the spread of the virus, for patients with and without COVID-19. The Swedish coronavirus strategy was different compared to many other countries, which might have affected end-of-life care. The aim was to describe the experiences of end-of-life care for berea…
Intentionally ending one's own life in the presence or absence of a medical condition: A nationwide mortality follow-back study
In the Netherlands, people who wish to intentionally end their own life can request for physician assistance in dying (PAD). Having a classifiable medical condition is a prerequisite to receive PAD. Some people, either in the presence or absence of a medical condition, choose to end life without assistance from a physician. This study estimates the frequency of people who intentionally ended their own life, and describes their demographic and med…
Understanding relatives’ experience of death rattle
Background Death rattle is a frequently occurring symptom in the last phase of life. The experience of death rattle of relatives has been found to vary. It is unclear if treatment with medication is useful. The most fitting solution for this symptom is still under debate. Aim This study aims to better understand the experience of relatives of their loved ones’ death rattle. Design A qualitative interview study with a phenomenological approach was…
Practices of Ritualization in a Dutch Hospice Setting
In this article, we explore rituals and ritualized care practices in a hospice in the Netherlands. The research is guided by two research questions. First, we want to know what kind of rituals and ritualized care practices are taking place in the hospice. Second, we aim to understand these practices from a cultural perspective, i.e., to what cultural values do these practices refer? We distinguish five types of ritual: (1) care practices in the m…
Ritualization as Alternative Approach to the Spiritual Dimension of Palliative Care: A Concept Analysis
The spiritual dimension is considered to be a central component of palliative care. However, healthcare professionals have difficulties incorporating the spiritual dimension into their everyday practice. We propose a new approach by looking beyond the mere functionality of care practices. Rituals and ritualized practices can serve to express and communicate meanings and values. This article explores how ritualized practices have the ability to op…
Self‐reported health, healthcare service use and health‐related needs: A comparison of older and younger homeless people
The number of older homeless people with a limited life expectancy is increasing. European studies on their health-related characteristics are lacking. This study compared self-reported health, healthcare service use and health-related needs of older and younger homeless people in the Netherlands. It is part of a cohort study that followed 513 homeless people in the four major Dutch cities for a period of 2.5 years, starting from the moment they …
Definition and recommendations for advance care planning: An international consensus supported by the European Association for Palliative Care
The language of sedation in end-of-life care: The ethical reasoning of care providers in three countries
The application of ethically controversial medical procedures may differ from one place to another. Drawing on a keyword and text-mining analysis of 156 interviews with doctors and nurses involved in end-of-life care ('care providers'), differences between countries in care providers' ethical rationales for the use of sedation are reported. In the United Kingdom, an emphasis on titrating doses proportionately against symptoms is more likely, main…
The effects of advance care planning on end-of-life care: A systematic review
An overview of ethical frameworks in public health: Can they be supportive in the evaluation of programs to prevent overweight
Public health ethical frameworks may be supportive in the evaluation of overweight prevention programs or policy, but seem to lack practical guidance to address ethical conflicts in this particular area
The Last Phase of Life: Who Requests and Who Receives Euthanasia or Physician-Assisted Suicide
BACKGROUND: When suffering becomes unbearable for patients they might request for euthanasia. OBJECTIVE: To study which patients request for euthanasia and which requests actually resulted in euthanasia in relation with diagnosis, care setting at the end of life, and patient demographics. DESIGN: A cross-sectional study covering all Dutch health care settings. PARTICIPANTS: In 2005, of death certificates of deceased persons, a stratified sample w…
Physicians' attitudes towards end-of-life decisions: A Comparison Between Seven Countries
A comparison of attitudes towards end-of-life decisions: Survey among the Dutch general public and physicians
The language of sedation in end-of-life care: The ethical reasoning of care providers in three countries
The application of ethically controversial medical procedures may differ from one place to another. Drawing on a keyword and text-mining analysis of 156 interviews with doctors and nurses involved in end-of-life care ('care providers'), differences between countries in care providers' ethical rationales for the use of sedation are reported. In the United Kingdom, an emphasis on titrating doses proportionately against symptoms is more likely, main…
A “Suicide Pill” For Older People: Attitudes of Physicians, the General Population, and Relatives of Patients who died After Euthanasia or Physician-Assisted Suicide in The Netherlands
In the Netherlands there has been ongoing debate in the past 10 years about the availability of a hypothetical "suicide pill", with which older people could end their life in a dignified way if they so wished. Data on attitudes to the suicide pill were collected in the Netherlands from 410 physicians, 1,379 members of the general population, and 87 relatives of patients who died after euthanasia or physician-assisted suicide. The general populati…
Decision-Making after Ultrasound Diagnosis of Fetal Abnormality
During the last few decades, the use of ultrasonography for the detection of fetal abnormalities has become widespread in many industrialised countries. This resulted in a shift in timing of the diagnosis of congenital abnormalities in infants from the neonatal period to the prenatal period. This has major implications for both clinicians and the couples involved. In case of ultrasound diagnosis of fetal anomaly there are several options for the …
Relatives' Perspective on the Terminally Ill Patients Who Died after Euthanasia or Physician-Assisted Suicide: A Retrospective Cross-Sectional Interview Study in the Netherlands
This study used retrospective interviews with 87 relatives to describe the experiences of patients who died by euthanasia or physician-assisted suicide (EAS) in the Netherlands. Most of the patients suffered from cancer (85%). The relatives were most often a partner (63%) or a child (28%) of the patient. Before explicitly requesting EAS most patients (79%) had spoken about their wishes concerning medical end-of-life decisions to be made at a late…
Frequency and determinants of advance directives concerning end-of-life care in The Netherlands
Dealing With Temporality in Patients With Life-Limiting Disease: An International Qualitative Study
The prospect of death influences people's thoughts about and how they deal with their remaining time. We aimed to understand whether patients with progressive, life-limiting diseases are oriented in the past, present, or future and how they deal with temporality. We conducted 57 in-depth interviews with end-of-life patients in 10 countries using thematic analysis at three levels (i.e., locally in three countries, with codes shared in the three-co…
Self‐reported health, healthcare service use and health‐related needs: A comparison of older and younger homeless people
The number of older homeless people with a limited life expectancy is increasing. European studies on their health-related characteristics are lacking. This study compared self-reported health, healthcare service use and health-related needs of older and younger homeless people in the Netherlands. It is part of a cohort study that followed 513 homeless people in the four major Dutch cities for a period of 2.5 years, starting from the moment they …
Using Drugs to End Life without an Explicit Request of the Patient
A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001, questionnaires were mailed to physicians that addressed the decision making that preceded their patient's death. Cases of ending life without an explicit request of the patient were compared with simil…
End-of-life decision-making in Belgium, Denmark, Sweden and Switzerland: Does place of death make a difference
OBJECTIVE: To examine differences in end-of-life decision-making in patients dying at home, in a hospital or in a care home. DESIGN: A death certificate study: certifying physicians from representative samples of death certificates, taken between June 2001 and February 2002, were sent questionnaires on the end-of-life decision-making preceding the patient's death. SETTING: Four European countries: Belgium (Flanders), Denmark, Sweden, and Switzerl…
A “Suicide Pill” For Older People: Attitudes of Physicians, the General Population, and Relatives of Patients who died After Euthanasia or Physician-Assisted Suicide in The Netherlands
In the Netherlands there has been ongoing debate in the past 10 years about the availability of a hypothetical "suicide pill", with which older people could end their life in a dignified way if they so wished. Data on attitudes to the suicide pill were collected in the Netherlands from 410 physicians, 1,379 members of the general population, and 87 relatives of patients who died after euthanasia or physician-assisted suicide. The general populati…
Physicians' attitudes towards end-of-life decisions: A Comparison Between Seven Countries
A comparison of attitudes towards end-of-life decisions: Survey among the Dutch general public and physicians
Relatives' Perspective on the Terminally Ill Patients Who Died after Euthanasia or Physician-Assisted Suicide: A Retrospective Cross-Sectional Interview Study in the Netherlands
This study used retrospective interviews with 87 relatives to describe the experiences of patients who died by euthanasia or physician-assisted suicide (EAS) in the Netherlands. Most of the patients suffered from cancer (85%). The relatives were most often a partner (63%) or a child (28%) of the patient. Before explicitly requesting EAS most patients (79%) had spoken about their wishes concerning medical end-of-life decisions to be made at a late…
Frequency and determinants of advance directives concerning end-of-life care in The Netherlands
Using Drugs to End Life without an Explicit Request of the Patient
A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001, questionnaires were mailed to physicians that addressed the decision making that preceded their patient's death. Cases of ending life without an explicit request of the patient were compared with simil…
End-of-life decision-making in Belgium, Denmark, Sweden and Switzerland: Does place of death make a difference
OBJECTIVE: To examine differences in end-of-life decision-making in patients dying at home, in a hospital or in a care home. DESIGN: A death certificate study: certifying physicians from representative samples of death certificates, taken between June 2001 and February 2002, were sent questionnaires on the end-of-life decision-making preceding the patient's death. SETTING: Four European countries: Belgium (Flanders), Denmark, Sweden, and Switzerl…
The Reporting Rate of Euthanasia and Physician-Assisted Suicide: A Study of the Trends
OBJECTIVES: To study trends in reporting rates of euthanasia from 1990 to 2005 in relation to whether recommended or nonrecommended drugs were used, and the most important differences between reported and unreported cases in 2005. RESEARCH DESIGN: Questionnaires were sent to a sample of 6860 physicians who had reported a death in 2005 (response 78%). Previously, 3 similar studies were done at 5-year intervals. The total number of euthanasia and p…
Decision-Making after Ultrasound Diagnosis of Fetal Abnormality
During the last few decades, the use of ultrasonography for the detection of fetal abnormalities has become widespread in many industrialised countries. This resulted in a shift in timing of the diagnosis of congenital abnormalities in infants from the neonatal period to the prenatal period. This has major implications for both clinicians and the couples involved. In case of ultrasound diagnosis of fetal anomaly there are several options for the …
How Patients and Relatives Experience a Visit from a Consulting Physician in the Euthanasia Procedure: A Study Among Relatives and Physicians
This study investigated the impact of a visit from a consulting physician on the patient and the relatives during the euthanasia procedure in The Netherlands. Data on experiences with the consultant's visit were collected from 86 relatives and 3,614 general practitioners, who described their most recent request for euthanasia or physician-assisted suicide. More than three-quarters of the patients experienced the visit as they had expected, or bec…
An overview of ethical frameworks in public health: Can they be supportive in the evaluation of programs to prevent overweight
Public health ethical frameworks may be supportive in the evaluation of overweight prevention programs or policy, but seem to lack practical guidance to address ethical conflicts in this particular area
The Last Phase of Life: Who Requests and Who Receives Euthanasia or Physician-Assisted Suicide
BACKGROUND: When suffering becomes unbearable for patients they might request for euthanasia. OBJECTIVE: To study which patients request for euthanasia and which requests actually resulted in euthanasia in relation with diagnosis, care setting at the end of life, and patient demographics. DESIGN: A cross-sectional study covering all Dutch health care settings. PARTICIPANTS: In 2005, of death certificates of deceased persons, a stratified sample w…
The effects of advance care planning on end-of-life care: A systematic review
The language of sedation in end-of-life care: The ethical reasoning of care providers in three countries
The application of ethically controversial medical procedures may differ from one place to another. Drawing on a keyword and text-mining analysis of 156 interviews with doctors and nurses involved in end-of-life care ('care providers'), differences between countries in care providers' ethical rationales for the use of sedation are reported. In the United Kingdom, an emphasis on titrating doses proportionately against symptoms is more likely, main…
Definition and recommendations for advance care planning: An international consensus supported by the European Association for Palliative Care
Ritualization as Alternative Approach to the Spiritual Dimension of Palliative Care: A Concept Analysis
The spiritual dimension is considered to be a central component of palliative care. However, healthcare professionals have difficulties incorporating the spiritual dimension into their everyday practice. We propose a new approach by looking beyond the mere functionality of care practices. Rituals and ritualized practices can serve to express and communicate meanings and values. This article explores how ritualized practices have the ability to op…
Self‐reported health, healthcare service use and health‐related needs: A comparison of older and younger homeless people
The number of older homeless people with a limited life expectancy is increasing. European studies on their health-related characteristics are lacking. This study compared self-reported health, healthcare service use and health-related needs of older and younger homeless people in the Netherlands. It is part of a cohort study that followed 513 homeless people in the four major Dutch cities for a period of 2.5 years, starting from the moment they …
Understanding relatives’ experience of death rattle
Background Death rattle is a frequently occurring symptom in the last phase of life. The experience of death rattle of relatives has been found to vary. It is unclear if treatment with medication is useful. The most fitting solution for this symptom is still under debate. Aim This study aims to better understand the experience of relatives of their loved ones’ death rattle. Design A qualitative interview study with a phenomenological approach was…
Practices of Ritualization in a Dutch Hospice Setting
In this article, we explore rituals and ritualized care practices in a hospice in the Netherlands. The research is guided by two research questions. First, we want to know what kind of rituals and ritualized care practices are taking place in the hospice. Second, we aim to understand these practices from a cultural perspective, i.e., to what cultural values do these practices refer? We distinguish five types of ritual: (1) care practices in the m…
Intentionally ending one's own life in the presence or absence of a medical condition: A nationwide mortality follow-back study
In the Netherlands, people who wish to intentionally end their own life can request for physician assistance in dying (PAD). Having a classifiable medical condition is a prerequisite to receive PAD. Some people, either in the presence or absence of a medical condition, choose to end life without assistance from a physician. This study estimates the frequency of people who intentionally ended their own life, and describes their demographic and med…
Prediction Models for Future High-Need High-Cost Healthcare Use as Part of Case-Finding for Care-Management: A Systematic Review
Dying during the Covid-19 Pandemic in Sweden: Relatives’ Experiences of End-of-Life Care (the CO-Live Study)
Background: The COVID-19 pandemic has seen many deaths, but the majority were for causes other than COVID-19. However, end-of-life care in all settings has been affected by measures limiting the spread of the virus, for patients with and without COVID-19. The Swedish coronavirus strategy was different compared to many other countries, which might have affected end-of-life care. The aim was to describe the experiences of end-of-life care for berea…
Closing the Gap: Multidisciplinary Coordination of a Care Plan for Patients with Multimorbidity
Introduction: Multidisciplinary communication and collaboration are of utmost importance in order to transition from fragmented and disease-centered care to patient-centered care for people with multimorbidity. Interdisciplinary coordination of a care plan is a vital part of this collaboration, yet can take many different forms. Our primary aim is to uncover the existing pathways of multidisciplinary communication and collaboration to reach an in…
Meaning-making following loss among bereaved spouses during the Covid-19 pandemic (the CO-Live study)
This study investigates how individuals construe, understand, and make sense of experiences during the first wave of the COVID-19 pandemic. Seventeen semi-structured interviews were conducted with bereaved spouses focusing on meaning attribution to the death of their partner. The interviewees were lacking adequate information, personalized care, and physical or emotional proximity; these challenges complicated their experience of a meaningful dea…
Newspaper coverage of advance care planning during the Covid-19 pandemic: Content analysis
COVID-19 may cause sudden serious illness, and relatives having to act on patients' behalf, emphasizing the relevance of advance care planning (ACP). We explored how ACP was portrayed in newspapers during year one of the pandemic. In 'LexisNexis Uni', we identified English-language newspaper articles about ACP and COVID-19, published January-November 2020. We applied content analysis; unitizing, sampling, recording or coding, reducing, inferring,…
Medicine (29 works) · Palliative Care and End-of-Life Issues (27 works) · Psychology (24 works) · Nursing (19 works) · Family medicine (14 works) · Grief, Bereavement, and Mental Health (14 works) · Palliative care (13 works) · Sociology (13 works) · Psychiatry (12 works) · Political science (10 works)