Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning
Child; Surveys and Questionnaires; Communication; Parents; communication; Pediatricians; paediatric palliative care; Advance Care Planning; shared decision-making
AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. METHODS: Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. RESULTS: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. CONCLUSION: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.
Fahner JC; Rietjens JAC; van der Heide A; van Delden JJM; Kars MC
Acta Paediatrica
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/apa.15061" target="_blank" rel="noreferrer noopener">10.1111/apa.15061</a>
Breaking Bad News: What Parents Would Like You to Know
comm child health; palliative care; patient perspective; qualitative research
OBJECTIVE: Breaking bad news about life-threatening and possibly terminal conditions is a crucial part of paediatric care for children in this situation. Little is known about how the parents of children with life-threatening conditions experience communication of bad news. The objective of this study is to analyse parents' experiences (barriers and facilitators) of communication of bad news. DESIGN: A qualitative study consisting of a constant comparative analysis of in-depth interviews conducted with parents. SETTING: The Netherlands. PARTICIPANTS: Sixty-four parents-bereaved and non-bereaved-of 44 children (aged 1-12 years, 61% deceased) with a life-threatening condition. INTERVENTIONS: None. RESULTS: Based on parents' experiences, the following 10 barriers to the communication of bad news were identified: (1) a lack of (timely) communication, (2) physicians' failure to ask parents for input, (3) parents feel unprepared during and after the conversation, (4) a lack of clarity about future treatment, (5) physicians' failure to voice uncertainties, (6) physicians' failure to schedule follow-up conversations, (7) presence of too many or unknown healthcare professionals, (8) parental concerns in breaking bad news to children, (9) managing indications of bad news in non-conversational contexts, and (10) parents' misunderstanding of medical terminology. CONCLUSIONS: This study shows healthcare professionals how parents experience barriers in bad news conversations. This mainly concerns practical aspects of communication. The results provide practical pointers on how the communication of bad news can be improved to better suit the needs of parents. From the parents' perspective, the timing of conversations in which they were informed that their child might not survive was far too late. Sometimes, no such conversations ever took place.
Brouwer MA; Maeckelberghe ELM; van der Heide A; Hein IM; Verhagen EAA
Archives of Disease in Childhood
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2019-318398" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-318398</a>
Trends in the use of opioids at the end of life and the expected effects on hastening death
Humans; Survival Rate; Analgesics; Attitude of Health Personnel; Questionnaires; Euthanasia; Survival Analysis; Risk Assessment; Risk Factors; decision making; Administration; Oral; Opioid/administration & dosage; Terminal Care/statistics & numerical data; Active/statistics & numerical data/trends; Netherlands/epidemiology; Pain/mortality/prevention & control; Physician's Practice Patterns/statistics & numerical data/trends; Physicians/statistics & numerical data
The aim of our study was to describe trends in opioid use and perceptions of having hastened the end of life of a patient. In 2005, a questionnaire was sent to 6860 physicians in The Netherlands who had attended a death. The response rate was 78%. In 1995 and 2001 similar studies were done. Physicians less often administered opioids with the intention to hasten death in 2005 (3.1% of the non-sudden deaths) than in 2001 and in 1995 (7% and 10%, respectively). Physicians gave similar dosages of opioids in 2005, 2001, and 1995, but physicians in 2005 less often thought that life was actually shortened than in 2001 and 1995 (37% in 2005, 50% in 2001, and 53% in 1995). Of the physicians in 2005 who did think that the life of the patient was shortened by opioids, 94% did not give higher dosages than were, in their own opinion, required for pain and symptom management. Physicians in 2005 more often took hastening death into account when they gave higher dosages of opioids when the patient experienced more severe symptoms and with female patients. In older patients (>or=80 years), physicians took the hastening of death into account more often, but the actual dosages of opioids were lower. These data indicate that physicians in The Netherlands less often thought that death was hastened by opioids and less often gave opioids, with the intention to hasten death in 2005 than in 2001 and 1995.
2009
Rurup ML; Borgsteede SD; van der Heide A; van der Maas PJ; Onwuteaka-Philipsen BD
Journal Of Pain And Symptom Management
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2008.02.010" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2008.02.010</a>
End-of-life practices in the Netherlands under the Euthanasia Act
Female; Humans; Male; Analgesics; Questionnaires; Follow-Up Studies; Aged; Middle Aged; Netherlands; Suicide; 80 and over; cause of death; Opioid/administration & dosage; Hypnotics and Sedatives/administration & dosage; Assisted/legislation & jurisprudence/statistics & numerical data/trends; Euthanasia/legislation & jurisprudence/statistics & numerical data/trends; Withholding Treatment/statistics & numerical data/trends
BACKGROUND: In 2002, an act regulating the ending of life by a physician at the request of a patient with unbearable suffering came into effect in the Netherlands. In 2005, we performed a follow-up study of euthanasia, physician-assisted suicide, and other end-of-life practices. METHODS: We mailed questionnaires to physicians attending 6860 deaths that were identified from death certificates. The response rate was 77.8%. RESULTS: In 2005, of all deaths in the Netherlands, 1.7% were the result of euthanasia and 0.1% were the result of physician-assisted suicide. These percentages were significantly lower than those in 2001, when 2.6% of all deaths resulted from euthanasia and 0.2% from assisted suicide. Of all deaths, 0.4% were the result of the ending of life without an explicit request by the patient. Continuous deep sedation was used in conjunction with possible hastening of death in 7.1% of all deaths in 2005, significantly increased from 5.6% in 2001. In 73.9% of all cases of euthanasia or assisted suicide in 2005, life was ended with the use of neuromuscular relaxants or barbiturates; opioids were used in 16.2% of cases. In 2005, 80.2% of all cases of euthanasia or assisted suicide were reported. Physicians were most likely to report their end-of-life practices if they considered them to be an act of euthanasia or assisted suicide, which was rarely true when opioids were used. CONCLUSIONS: The Dutch Euthanasia Act was followed by a modest decrease in the rates of euthanasia and physician-assisted suicide. The decrease may have resulted from the increased application of other end-of-life care interventions, such as palliative sedation.
2007
van der Heide A; Onwuteaka-Philipsen BD; Rurup ML; Buiting HM; van Delden JJ; Hanssen-de Wolf JE; Janssen AG; Pasman HR; Rietjens JA; Prins CJ; Deerenberg IM; Gevers JK; van der Maas PJ; van der Wal G
The New England Journal Of Medicine
2007
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Journal Article
<a href="http://doi.org/10.1056/NEJMsa071143" target="_blank" rel="noreferrer">10.1056/NEJMsa071143</a>
Using drugs to end life without an explicit request of the patient
Female; Humans; Male; Adult; Questionnaires; Aged; Middle Aged; Netherlands; Intention; Informed Consent; Ethics; Suicide; Medical; Belgium; Denmark; adolescent; 80 and over; decision making; Switzerland; Assisted/ethics/legislation & jurisprudence/psychology; Euthanasia/ethics/legislation & jurisprudence/psychology; Mental Competency/legislation & jurisprudence; Patient Participation/legislation & jurisprudence/psychology; Physician's Practice Patterns/ethics; Terminal Care/ethics/legislation & jurisprudence/psychology
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 similar cases from 1995 and with cases from Belgium, Denmark, and Switzerland. In the Netherlands in 2001, patients receiving life-ending drugs without their explicit request were most often 80+ years old and had cancer. Most of them were incompetent patients nearing death. Characteristics of this practice in 1995 were quite comparable, as were characteristics of this practice in Belgium, Denmark, and Switzerland. The use of drugs with the intention to hasten death without an explicit request of the patient is part of medical end-of-life practice in the studied countries, regardless of their legal framework, and it occurs in similar fashion.
2007
Rietjens JA; Bilsen J; Fischer S; van der Heide A; van der Maas PJ; Miccinessi G; Norup M; Onwuteaka-Philipsen BD; Vrakking AM; van der Wal G
Death Studies
2007
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Journal Article
<a href="http://doi.org/10.1080/07481180601152443" target="_blank" rel="noreferrer">10.1080/07481180601152443</a>
Forgoing treatment at the end of life in 6 European countries
statistics & numerical data Male Middle Aged Physician's Practice Patterns; statistics & numerical data Physician-Patient Relations Questionnaires Refusal to Treat; 80 and over Cause of Death/trends Child Child; Adolescent Adult Aged Aged; Attitudes; Non-U.S. Gov't Retrospective StudiesTerminally Ill Treatment Refusal/statistics & numerical data; PedPal Lit; Practice Humans Infant Life Support Care; Preschool Comparative StudyDecision Making Europe/epidemiology Female Health Knowledge; statistics & numerical data Registries; statistics & numerical data Research Support
Background: Modern medicine provides unprecedentedopportunities in diagnostics and treatment. However,in some situations at the end of a patient’s life, manyphysicians refrain from using all possible measures to prolonglife. We studied the incidence of different types oftreatment withheld or withdrawn in 6 European countriesand analyzed the main background characteristics.Methods: Between June 2001 and February 2002,samples were obtained from deaths reported to registriesin Belgium, Denmark, Italy, the Netherlands, Sweden,and Switzerland. The reporting physician was thensent a questionnaire about the medical decision-makingprocess that preceded the patient’s death.Results: The incidence of nontreatment decisions,whether or not combined with other end-of-life decisions,varied widely from 6% of all deaths studied in Italyto 41% in Switzerland. Most frequently forgone in everycountry were hydration or nutrition and medication, togetherrepresenting between 62% (Belgium) and 71%(Italy) of all treatments withheld or withdrawn. Forgoingtreatment estimated to prolong life for more than 1month was more common in the Netherlands (10%), Belgium(9%), and Switzerland (8%) than in Denmark (5%),Italy (3%), and Sweden (2%). Relevant determinants oftreatment being withheld rather than withdrawn wereolder age (odds ratio [OR], 1.53; 95% confidence interval[CI], 1.31-1.79), death outside the hospital (death inhospital: OR, 0.80; 95% CI, 0.68-0.93), and greater lifeshorteningeffect (OR, 1.75; 95% CI, 1.27-2.39).Conclusions: In all of the participating countries, lifeprolongingtreatment is withheld or withdrawn at the endof life. Frequencies vary greatly among countries. Lowtechnologyinterventions, such as medication or hydrationor nutrition, are most frequently forgone. In olderpatients and outside the hospital, physicians prefer notto initiate life-prolonging treatment at all rather than stopit later.
2005
Bosshard G; Nilstun T; Bilsen J; Norup M; Miccinesi G; van Delden JJ; Faisst K; van der Heide A
Archives Of Internal Medicine
2005
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Journal Article
<a href="http://doi.org/10.1001/archinte.165.4.401" target="_blank" rel="noreferrer">10.1001/archinte.165.4.401</a>
Medical end-of-life decisions for children in the Netherlands
PedPal Lit; 21% by the alleviation of pain or symptoms with a possible life-shortening effect; Adolescent Child Child; Assisted/statistics & numerical data Terminal Care/; Decision Making Euthanasia/; Non-U.S. Gov't Retrospective Studies Suicide; Passive/statistics & numerical data Female Hospitals; Pediatric Humans Infant Interviews Male Netherlands/epidemiology Pediatrics/; Preschool Death Certificates; statistics & numerical data Euthanasia; statistics & numerical data Physician-Patient Relations Professional-Family Relations Questionnaires Research Support
2005
Vrakking AM; van der Heide A; Arts WF; Pieters R; van der Voort E; Rietjens JA; Onwuteaka-Philipsen BD; van der Maas PJ; van der Wal G
Archives Of Pediatrics & Adolescent Medicine
2005
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Journal Article
<a href="http://doi.org/10.1001/archpedi.159.9.802" target="_blank" rel="noreferrer">10.1001/archpedi.159.9.802</a>
Clinical problems with the performance of euthanasia and physician-assisted suicide in The Netherlands
Female; Humans; Male; Adult; Data Collection; Aged; Middle Aged; Euthanasia; Netherlands; Suicide; 80 and over; Empirical Approach; Death and Euthanasia; Active; Random Allocation; Euthanasia/statistics & numerical data; Empirical Research; Assisted/statistics & numerical data
BACKGROUND AND METHODS: The characteristics and frequency of clinical problems with the performance of euthanasia and physician-assisted suicide are uncertain. We analyzed data from two studies of euthanasia and physician-assisted suicide in The Netherlands (one conducted in 1990 and 1991 and the other in 1995 and 1996), with a total of 649 cases. We categorized clinical problems as technical problems, such as difficulty inserting an intravenous line; complications, such as myoclonus or vomiting; or problems with completion, such as a longer-than-expected interval between the administration of medications and death. RESULTS: In 114 cases, the physician's intention was to provide assistance with suicide, and in 535, the intention was to perform euthanasia. Problems of any type were more frequent in cases of assisted suicide than in cases of euthanasia. Complications occurred in 7 percent of cases of assisted suicide, and problems with completion (a longer-than-expected time to death, failure to induce coma, or induction of coma followed by awakening of the patient) occurred in 16 percent of the cases; complications and problems with completion occurred in 3 percent and 6 percent of cases of euthanasia, respectively. The physician decided to administer a lethal medication in 21 of the cases of assisted suicide (18 percent), which thus became cases of euthanasia. The reasons for this decision included problems with completion (in 12 cases) and the inability of the patient to take all the medications (in 5). CONCLUSIONS: There may be clinical problems with the performance of euthanasia and physician-assisted suicide. In The Netherlands, physicians who intend to provide assistance with suicide sometimes end up administering a lethal medication themselves because of the patient's inability to take the medication or because of problems with the completion of physician-assisted suicide.
2000
Groenewoud JH; van der Heide A; Onwuteaka-Philipsen BD; Willems DL; van der Maas PJ; van der Wal G
The New England Journal Of Medicine
2000
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Journal Article
<a href="http://doi.org/10.1056/NEJM200002243420805" target="_blank" rel="noreferrer">10.1056/NEJM200002243420805</a>
Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners
Cancer Epidemiology; General Practitioner; Palliative Therapy; Child; Controlled Study; Cross-sectional Study; Death; Distress Syndrome; Doctor Patient Relation; Fatigue; Human; Human Versus Animal Comparison; Major Clinical Study; Nonhuman; Pain; Panic; Powerlessness; Questionnaire; Sadness; Symptom; Thermometer
Context: Although a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. Objectives: The objective of this study was to explore the perspectives of GPs who care for children with advanced-stage cancer in a home-based setting. Methods: In this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death, and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10). Results: A total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients. The median interval between the child's death and completing the questionnaire was seven years. The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%). Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's death, and they rated their own distress level as relatively high during the terminal phase (median score 6, range 0-9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. Conclusion: In general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among health care professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death. Copyright _ 2017 American Academy of Hospice and Palliative Medicine.
van der Geest IMM; Bindels PJE; Pluijm SMF; Michiels EMC; van der Heide A; Pieters R; Darlington ASE; van den Heuvel-Eibrink MM
Journal Of Pain And Symptom Management
2017
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<a href="http://doi.org/10.1016/j.jpainsymman.2016.09.012" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.09.012</a>