euthanasia case study pdf

• Introduction
• Conclusions
• Article Information

eAppendix. Review Procedures of the Dutch Regional Review Committees

• The Treatment of Patients With Unbearable Suffering JAMA Internal Medicine Editorial February 1, 2021 Diane E. Meier, MD
• Narrative Ethics in Response to Unbearable Suffering—the Dutch Slippery Slope Is Nonexistent JAMA Internal Medicine Comment & Response July 1, 2021 Barend W. Florijn, MD, PhD; Ad A. Kaptein, PhD
• Narrative Ethics in Response to Unbearable Suffering—the Dutch Slippery Slope Is Nonexistent JAMA Internal Medicine Comment & Response July 1, 2021 Jan Bollen, LLM, MD, PhD; Walther van Mook, MD, PhD; Kris Vissers, MD, PhD
• Narrative Ethics in Response to Unbearable Suffering—the Dutch Slippery Slope Is Nonexistent—Reply JAMA Internal Medicine Comment & Response July 1, 2021 Diane E. Meier, MD

See More About

Select your interests.

Customize your JAMA Network experience by selecting one or more topics from the list below.

• Academic Medicine
• Acid Base, Electrolytes, Fluids
• Allergy and Clinical Immunology
• American Indian or Alaska Natives
• Anesthesiology
• Anticoagulation
• Art and Images in Psychiatry
• Artificial Intelligence
• Assisted Reproduction
• Bleeding and Transfusion
• Caring for the Critically Ill Patient
• Challenges in Clinical Electrocardiography
• Climate and Health
• Climate Change
• Clinical Challenge
• Clinical Decision Support
• Clinical Implications of Basic Neuroscience
• Clinical Pharmacy and Pharmacology
• Complementary and Alternative Medicine
• Consensus Statements
• Coronavirus (COVID-19)
• Critical Care Medicine
• Cultural Competency
• Dental Medicine
• Dermatology
• Diabetes and Endocrinology
• Diagnostic Test Interpretation
• Drug Development
• Electronic Health Records
• Emergency Medicine
• End of Life, Hospice, Palliative Care
• Environmental Health
• Equity, Diversity, and Inclusion
• Facial Plastic Surgery
• Gastroenterology and Hepatology
• Genetics and Genomics
• Genomics and Precision Health
• Global Health
• Guide to Statistics and Methods
• Hair Disorders
• Health Care Delivery Models
• Health Care Economics, Insurance, Payment
• Health Care Quality
• Health Care Reform
• Health Care Safety
• Health Care Workforce
• Health Disparities
• Health Inequities
• Health Policy
• Health Systems Science
• History of Medicine
• Hypertension
• Images in Neurology
• Implementation Science
• Infectious Diseases
• Innovations in Health Care Delivery
• JAMA Infographic
• Law and Medicine
• Leading Change
• Less is More
• LGBTQIA Medicine
• Lifestyle Behaviors
• Medical Coding
• Medical Devices and Equipment
• Medical Education
• Medical Education and Training
• Medical Journals and Publishing
• Mobile Health and Telemedicine
• Narrative Medicine
• Neuroscience and Psychiatry
• Notable Notes
• Nutrition, Obesity, Exercise
• Obstetrics and Gynecology
• Occupational Health
• Ophthalmology
• Orthopedics
• Otolaryngology
• Pain Medicine
• Palliative Care
• Pathology and Laboratory Medicine
• Patient Care
• Patient Information
• Performance Improvement
• Performance Measures
• Perioperative Care and Consultation
• Pharmacoeconomics
• Pharmacoepidemiology
• Pharmacogenetics
• Pharmacy and Clinical Pharmacology
• Physical Medicine and Rehabilitation
• Physical Therapy
• Physician Leadership
• Population Health
• Primary Care
• Professional Well-being
• Professionalism
• Psychiatry and Behavioral Health
• Public Health
• Pulmonary Medicine
• Regulatory Agencies
• Reproductive Health
• Research, Methods, Statistics
• Resuscitation
• Rheumatology
• Risk Management
• Scientific Discovery and the Future of Medicine
• Shared Decision Making and Communication
• Sleep Medicine
• Sports Medicine
• Stem Cell Transplantation
• Substance Use and Addiction Medicine
• Surgical Innovation
• Surgical Pearls
• Teachable Moment
• Technology and Finance
• The Art of JAMA
• The Arts and Medicine
• The Rational Clinical Examination
• Tobacco and e-Cigarettes
• Translational Medicine
• Trauma and Injury
• Treatment Adherence
• Ultrasonography
• Users' Guide to the Medical Literature
• Vaccination
• Venous Thromboembolism
• Veterans Health
• Women's Health
• Workflow and Process
• Wound Care, Infection, Healing

Others Also Liked

• Download PDF
• X Facebook More LinkedIn

van den Berg V , van Thiel G , Zomers M, et al. Euthanasia and Physician-Assisted Suicide in Patients With Multiple Geriatric Syndromes. JAMA Intern Med. 2021;181(2):245–250. doi:10.1001/jamainternmed.2020.6895

Manage citations:

© 2024

• Permissions

Euthanasia and Physician-Assisted Suicide in Patients With Multiple Geriatric Syndromes

• 1 Department of Care Ethics, University of Humanistic Studies, Utrecht, the Netherlands
• 2 Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, the Netherlands
• 3 Department of Medical Ethics, Philosophy, and History of Medicine, Erasmus Medical Center Rotterdam, Rotterdam, the Netherlands
• 4 Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, the Netherlands
• 5 Department of Epidemiology, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, the Netherlands
• Editorial The Treatment of Patients With Unbearable Suffering Diane E. Meier, MD JAMA Internal Medicine
• Comment & Response Narrative Ethics in Response to Unbearable Suffering—the Dutch Slippery Slope Is Nonexistent Barend W. Florijn, MD, PhD; Ad A. Kaptein, PhD JAMA Internal Medicine
• Comment & Response Narrative Ethics in Response to Unbearable Suffering—the Dutch Slippery Slope Is Nonexistent Jan Bollen, LLM, MD, PhD; Walther van Mook, MD, PhD; Kris Vissers, MD, PhD JAMA Internal Medicine
• Comment & Response Narrative Ethics in Response to Unbearable Suffering—the Dutch Slippery Slope Is Nonexistent—Reply Diane E. Meier, MD JAMA Internal Medicine

Question   What are the patient characteristics and circumstances associated with the request for euthanasia and physician-assisted suicide (EAS) in cases of multiple geriatric syndromes as reported in the case summaries of the Dutch Regional Euthanasia Review Committees?

Findings   In this qualitative study of 53 case summaries published by the Dutch Regional Euthanasia Review Committees, a combination of multiple geriatric syndromes, such as visual impairment, hearing loss, pain, and chronic tiredness, may have led, in most cases, to an accumulation of suffering on multiple dimensions, resulting in a request for EAS because of unbearable suffering.

Meaning   This study suggests that unbearable suffering leading to a request for EAS in older persons without a life-threatening condition is often associated with a combination of medical, social, and existential issues.

Importance   The Dutch Regional Euthanasia Review Committees (RTEs) reviewed and reported an increasing number of cases of euthanasia and physician-assisted suicide (EAS) requested by older people with multiple geriatric syndromes (MGS). Knowledge of the characteristics of cases of EAS for MGS is important to facilitate societal debate and to monitor EAS practice.

Objective   To examine the accumulation of patient characteristics, geriatric syndromes, and other circumstances as reported in the case summaries of the RTEs that led to unbearable suffering associated with a request for EAS and to analyze the RTEs’ assessments of these cases of EAS.

Design, Setting, and Participants   A qualitative content analysis was conducted of all case summaries filed from January 1, 2013, to December 31, 2019, under the category MGS and published in a national open access database. These case summaries were selected by the RTEs from the total of 1605 reported cases of EAS in the category MGS.

Results   The RTEs published 53 cases (41 [77%] female) under the category MGS. A total of 28 patients (53%) had always perceived themselves as independent, active, and socially involved. None of the patients suffered from life-threatening conditions. Multiple geriatric syndromes, such as visual impairment (34 cases [64%]), hearing loss (28 cases [53%]), pain (25 cases [47%]), and chronic tiredness (22 cases [42%]), were common. The request for EAS was often preceded by a sequence of events, especially recurrent falls (33 cases [62%]). Although physical suffering could be determined in all cases, the case descriptions found that suffering occurred on multiple dimensions, such as the loss of mobility (44 [83%]), fears (21 [40%]), dependence (23 [43%]), and social isolation (19 [36%]).

Conclusions and Relevance   This qualitative study suggests that an accumulation of geriatric syndromes leading to a request for EAS is often intertwined with the social and existential dimension of suffering. This leads to a complex interplay of physical, psychological, and existential suffering that changes over time.

Since 2002, Dutch physicians are allowed to perform euthanasia and physician-assisted suicide (EAS) when the due care criteria laid down in the Dutch Termination of Life on Request and Assisted Suicide Act (hereafter referred to as the Dutch euthanasia law) are met. 1 One of the 6 criteria for legally permissible EAS is that “the physician must be satisfied that the patient’s suffering is unbearable, with no prospect of improvement.” (For the other criteria, see Box 1 .) Each case of EAS is reported to the Dutch Regional Euthanasia Review Committees (RTEs). These committees assess and determine whether the physician acted in accordance with the due care criteria in the Dutch euthanasia law. 2 (See the eAppendix in the Supplement for information about the RTEs’ review procedure.)

Criteria for Due Care in the Termination of Life on Request and Assisted Suicide (Review Procedures) Act (2002) 1

Requirements physician must satisfy:

Must be satisfied that the patient’s request is voluntary and well considered.

Must be satisfied that the patient’s suffering is unbearable, with no prospect of improvement.

Must have informed the patient about the situation and prognosis.

Must have come to the conclusion, together with the patient, that there is no reasonable alternative in the patient’s situation.

Must have consulted at least one other, independent physician, who must see the patient and give a written opinion on whether the due care criteria set out in (a) to (d) have been fulfilled.

Must have exercised due medical care and attention in terminating the patient’s life or assisting in suicide.

Most Dutch EAS cases involve patients who suffer unbearably because of cancer in the last phase of life. In recent years, however, an increase has been reported in EAS performed in patients with dementia, psychiatric disorders, or multiple geriatric syndromes (MGS). 3 , 4 Following the Euthanasia Code 2018, a geriatric syndrome is defined as degenerative in nature, often occurring in older patients. With regard to MGS, such as sight impairment, hearing impairment, osteoporosis, osteoarthritis, balance problems, or cognitive deterioration, the Dutch RTE guidance for physicians states that these geriatric syndromes may cause unbearable suffering without the prospect of improvement “in conjunction with the patient’s medical history, life history, personality, values and stamina.” 5 (pp 23-24) Although acceptance of EAS in cases of MGS is increasing in Dutch society, a majority of Dutch physicians are reluctant to grant a request for EAS on these grounds. 6 Such requests are considered to be much more complex than those made by patients with a terminal disease, not only in ethical terms but also in legal and medical terms. For example, when does an accumulation of geriatric syndromes cause unbearable suffering without prospect of improvement? Are physicians sufficiently equipped to assess this suffering? Are these requests caused by a trend of people increasingly regarding normal decline as a disease?

This study aims to contribute to the further debate on dealing with requests for EAS from older persons with MGS. To this end, we (1) describe the patient characteristics, including the geriatric syndromes, that are associated with the request for EAS in cases of MGS; (2) explore which accumulation of syndromes and circumstances are associated with unbearable suffering in cases of MGS; and (3) attempt to gain a better understanding of the RTEs’ assessment practice.

We studied all 53 anonymized case summaries filed under the category MGS from an open access database on the RTE website. 1 These cases are selected by the RTEs from all 1605 2 reported EAS cases in the category MGS from January 1, 2013, to December 31, 2019. An overview of total numbers of deaths, EAS cases, and EAS cases of MGS per year is given in Table 1 . 7 - 9 The Medical Research Ethics Committee Utrecht confirmed that our study was exempt from further ethical review, so no informed consent was required. All patient data were deidentified. This study followed the Standards for Reporting Qualitative Research ( SRQR ) reporting guideline. The selection of cases for publication on the website is guided by the aim to give an overview of the spectrum of cases reviewed and to contribute to the understanding of complex or controversial cases among physicians and the general public. In a meeting with a member and the chairman of the RTEs, we discussed the question of which cases are to be published in the national database. They confirmed that not only cases that address questions and dilemmas were selected but also cases representing situations that often occurred and were therefore considered common (oral communication, February 28, 2019). The length of the case summaries varies from 567 to 3130 words (approximately 2-6 pages), with a median of 1132 words. Among the more extensive case reports are the ones in which the RTE asked the physician (and sometimes also the consultant) for additional information. In these cases, the RTE had a face-to-face discussion with the physician (and consultant).

We conducted a directed qualitative content analysis 10 of the cases using the analysis program ATLAS.ti, version 8.4.15 (ATLAS.ti Scientific Software Development GmbH). One author (V.v.d.B.) read all 53 documents completely to acquire an overall picture of the nature of the cases, repeatedly comparing variables of interest in light of the main research question of the study. The coding scheme was developed by 2 authors (V.v.d.B. and E.v.W.) and discussed with another (G.v.T.). All documents were coded by 1 author (V.v.d.B.) based on the predetermined codes. New findings beyond the scheme and discrepancies were discussed and resolved among 4 authors (V.v.d.B., E.v.W., G.v.T., and M.Z.) and assessed by the whole team. Given the descriptive goals of this study, the emphasis was on frequency tabulation.

The RTEs published 53 cases (41 [77%] female) under the category MGS, which were reported between 2013 and 2019. In Box 2 , we first present 3 of the analyzed cases to illustrate how the combination of medical conditions and other characteristics accumulate to create a situation in which the physician became convinced that the patient was suffering unbearably without prospect of improvement.

Descriptions of Cases of Multiple Geriatric Syndromes a

A woman in the age range of 90 to 100 years had progressive vision loss and hearing impairment. She also experienced chronic pain in her legs, loss of mobility, and balance problems. A few weeks before the euthanasia and physician-assisted suicide, she fell out of bed and suffered several fractures. Since that moment, her fear of a repeated fall made it difficult for her to sleep. Because of her condition, she felt lonely and cut off from her social environment. She was not able to read or watch television and was not up to any activities anymore.

A woman in her 90s had been suffering from the consequences of osteoporosis for several years. Recurrent falls caused multiple fractures. A month before her death, she underwent surgery for a hip fracture. Her recovery did not go well, and the prognosis was bleak. Loss of mobility and pain prevented her from sitting comfortably. The lack of any prospect of improvement, the loss of autonomy, being completely dependent, and the fear of losing clarity of mind together caused the unbearable suffering that was the medical grounds for euthanasia and physician-assisted suicide.

A woman older than 90 years whose physical health was deteriorating was dealing with hearing loss, severe fatigue, uncontrollable headaches, restless legs, and incontinence. All her life she had been a very independent, active, and engaged person. She hated accepting help from others, and because of her worsening hearing impairment, she was not able to participate in social activities. She felt excluded from society. She feared further physical decline, with her greatest fear being forced to move to a nursing home environment.

a These case descriptions illustrate the most important findings of this study: (1) that falls often occur and can be a tipping point that leads to a request for euthanasia; (2) that the consequences of a single geriatric syndrome can, in some cases, be sufficient to grant a request for euthanasia; and (3) that suffering has multiple intertwined dimensions.

Patient characteristics and circumstances are given in Table 2 . All 53 patients were 80 years of age or older and 41 (77%) were 90 years of age or older. In 28 cases (53%), it was reported that patients had always perceived themselves as independent, active, and socially involved persons.

All but 1 patient had more than 1 medical condition that caused multiple symptoms. In none of the cases were the health problems caused by a life-threatening disease. Visual impairment was the most reported symptom (34 cases [64%]), followed by hearing loss (28 cases [53%]) and chronic pain (25 cases [47%]).

In most cases, 2 types of circumstances were reported to be important for the patient’s wish to receive EAS. First, in 39 cases (74%), there was a sequence of events set off by an incident (the tipping point). The older patients in these cases had been dealing with multiple health problems for several years. The patients judged their suffering to be sufficient to request EAS after a decline in physical health because of the incident (eg, a fall, an infection, a hospitalization, or the loss of a close relative). Second, partly overlapping the first circumstance, in 33 cases (62%), falls and their consequences were reported. Recurrent falls caused complicated fractures in 7 cases (13%) and fear of falling in 11 cases (21%), which contributed to the experience of unbearable suffering.

Each case summary contained a characterization of the patient’s suffering caused by MGS. These characterizations show an association between medical conditions and losses in several dimensions of life (ie, physical, psychological, social, and existential) ( Table 3 ). In 44 cases (83%), loss of mobility was an element in the suffering of the patient. The loss of mobility ranged from not being able to go outside for a walk to being bedridden and inactive. Different kinds of fears were also an element in the experience of suffering. In addition, patients experienced social isolation and loneliness (19 [36%]). Not being able to read, watch television, or undertake meaningful activities was also an element of suffering in 19 cases (36%).

The cases reported under the category MGS all described patients whose suffering was caused by a combination of symptoms attributable to an accumulation of syndromes. There was 1 exception, which demonstrates that a singular syndrome in combination with related experiences can be accepted by the RTEs as sufficient to meet the due care criterion of unbearable suffering without prospect of improvement.

All case summaries, in line with the standard procedure and the due care criteria stipulated in the Dutch law, stated that the physicians were convinced that the request was voluntary, which means that the patients made their wishes known without pressure or undue influence from others, such as family members. In addition, all published cases reflect that the physician saw no alternatives for improvement. In a number of cases, the physician had consulted a geriatric psychiatrist to rule out a reversible depression. With the exception of 1 person who received assisted suicide, all patients received euthanasia. In 32 cases (60%), a general practitioner performed the EAS; in the other 21 cases (40%), a physician from the Expertise Center Euthanasia 3 (formerly the End-of-Life Clinic) was involved.

During the review process of 9 cases (17%), the RTEs had additional questions (25 in total) concerning the physician’s justification. Five questions were whether the patient’s unbearable suffering originated in a medically classifiable disease. The question regarding additional information at the request of the patient was asked by the RTE in 5 cases. Three times the RTE wanted additional information on possible alternatives for the EAS, and 3 times they requested information on how the physician came to be satisfied that the patient’s suffering was unbearable. Two times the RTE wanted to know more about the psychological aspect of the patient’s suffering, including the question regarding whether the patient was suffering from depression. Examples of other questions were whether consultation of an independent expert had been necessary and whether due medical care was exercised in the performance of the EAS.

After obtaining additional information from the physician who performed the EAS, the independent consultant, and other involved medical specialists, the RTEs concluded that the EAS was in accordance with the due care criteria in all but 1 case (eAppendix in the Supplement ). In the case that was not approved, several due care criteria were not met. The physician was not prosecuted in court. Compared with EAS in cancer cases, cases of MGS had a greater chance of generating more questions during the review procedures of the RTEs. Physicians of the Expertise Center Euthanasia were 5 times more likely to be questioned. 4

The patients who received EAS because of MGS were the oldest old. Most (77%) of the patients were women. None of them had a life-threatening condition, and all except 1 patient with a single geriatric condition had MGS, such as visual impairment and hearing loss. Pain and chronic tiredness were also common.

This study is the first, to our knowledge, to describe case reports of EAS for MGS. Two studies 11 , 12 have analyzed cases of EAS for patients with psychiatric illnesses. Additional literature on the experiences concerning end-of-life decisions for the oldest old is scarce. Available studies 13 , 14 reveal that fear of suffering, the wish to remain living at home, and the need for control are important elements in end-of-life decision-making. Although a medical condition associated with old age with symptoms could be determined in all 53 cases analyzed in this study, the case descriptions show that suffering occurred on multiple dimensions besides the medical one. This finding corresponds with the influential view of Cassell 15 that the interconnectedness and the interplay among physical, psychological, social, and existential experiences are crucial for a deeper understanding of suffering. 16 Suffering not only is a matter of pain and other physical symptoms but also has psychological, social, and existential dimensions. 15 In addition, suffering has a temporal dimension: it can be triggered by becoming aware of what the future holds. 17 The present analysis shows that fearing the future, fearing further physical decline, becoming more dependent, or losing control over the situation are important aspects of suffering. This finding is in line with previous research 18 into requests for EAS by patients with end-stage cancer. In patients with MGS, these fears seem to emerge after a sequence of events. Furthermore, in 74% of the cases, an incident was reported as a decisive factor in the request for EAS. These incidents did not merely add to the accumulation of health problems. It has been observed that such incidents can be seen as a “tipping point, a warning of functional decline, dependence and isolation.” 19 (p 904) In 33 of the 39 cases with incidents, this point concerned a fall that negatively affected different life dimensions. This finding confirms previous studies in which falls were interpreted as a starting point for reflection on life 20 and a factor associated with the development of a wish to die. 21

This study has strengths and limitations. Its primary strength is its exploration of the case summaries of the RTEs in the category of MGS. These summaries describe real EAS cases and are the only accessible source to study EAS in patients suffering from MGS. Nevertheless, this study is limited by the fact that the published cases are a selection of a larger number of dossiers. For example, in 2018, the RTEs reviewed a total of 205 cases of EAS for patients with MGS. In addition, data were extracted from secondary official state documents. Such documents represent a shortened and specific version of realities, suitable for publication on an open access website 22 and therefore containing little social history. Occasionally, a spouse or children are mentioned, but neither a person’s family structure nor living arrangement could be reconstructed.

In addition, there is a risk of underreporting cases of euthanasia. Two partly overlapping sources of underreporting exist. First, physicians sometimes misclassify their actions. Second, physicians who perform euthanasia do not always report this action to the RTEs. With regard to reporting to the RTEs, 81% of all cases of euthanasia were reported in 2015. 4 Conclusions about the numbers and characteristics of patients with MGS among these misclassified and/or unreported cases cannot be drawn because specific data are not available.

According to these findings, an accumulation of geriatric syndromes alone is insufficient to explain the unbearableness of suffering that leads to a request for EAS in older persons with MGS. In this study, all cases referred to patients who had been suffering from MGS for several years. At a certain moment in time, the suffering resulted in a request for EAS. Given that patients were already suffering from the geriatric syndromes for a long time, the findings suggest that it is not only the total number of these geriatric syndromes that is associated with unbearable suffering (and a granted request) but also the sum of these problems (often in combination with a tipping point incident) in conjunction with the patient’s medical history, life history, personality, and values that gives rise to suffering that the patient in question experiences as unbearable and without prospect of improvement. This finding also may also explain why, in some exceptional cases, the medical dimension of the suffering can also be based on only 1 geriatric syndrome that, in combination with social and existential problems associated with that syndrome, may result in unbearable suffering. In summary, in most cases, experiences in the social and existential dimensions are intertwined with the medical dimension of suffering. The variety of relevant elements in these complex cases raises the question of what the role of these different elements should be in the assessment of requests for EAS and which expertise is needed for optimal care for these older persons.

Accepted for Publication: August 31, 2020.

Published Online: December 7, 2020. doi:10.1001/jamainternmed.2020.6895

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2020 van den Berg V et al. JAMA Internal Medicine .

Corresponding Author: Els van Wijngaarden, PhD, Department of Care Ethics, University of Humanistic Studies, Kromme Nieuwegracht 29, 3512 HD Utrecht, the Netherlands ( [email protected] ).

Author Contributions: Ms van den Berg had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: van den Berg, van Thiel, Leget, Sachs, Uiterwaal, van Wijngaarden.

Acquisition, analysis, or interpretation of data: van den Berg, van Thiel, Zomers, Hartog, Sachs, Uiterwaal, van Wijngaarden.

Drafting of the manuscript: van den Berg, van Thiel, Sachs, van Wijngaarden.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Sachs, Uiterwaal, van Wijngaarden.

Obtained funding: van Thiel, Sachs, van Wijngaarden.

Administrative, technical, or material support: Hartog.

Supervision: van Thiel, Leget, Sachs, Uiterwaal, van Wijngaarden.

Conflict of Interest Disclosures: Ms van den Berg reports receiving grants from the Netherlands Organisation for Health Research and Development (ZonMw) during the conduct of the study. Dr van Thiel reports receiving grants from ZonMw during the conduct of the study. Ms Zomers reports receiving grants from ZonMw during the conduct of the study and outside the submitted work. Ms Hartog reports receiving grants from ZonMW during the conduct of the study. Dr Leget reports receiving grants from ZonMW during the conduct of the study and outside the submitted work. Dr Sachs reports receiving grants from ZonMw during the conduct of the study. Dr van Wijngaarden reports grants from ZonMw during the conduct of the study. No other disclosures were reported.

Funding/Support: This study was commissioned by the Dutch Ministry of Health and funded by grant 643001001 from the Netherlands Organisation for Health Research and Development.

Role of the Funder/Sponsor: The funding source had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

• Register for email alerts with links to free full-text articles
• Access PDFs of free articles
• Manage your interests
• Save searches and receive search alerts

• Open access
• Published: 19 July 2023

Chemical restraint as behavioural euthanasia: case studies from the Royal Commission into Aged Care Quality and Safety

• Patricia Cain   ORCID: orcid.org/0000-0002-4377-3690 1 ,
• Pelden Chejor   ORCID: orcid.org/0000-0001-6713-7421 1 &
• Davina Porock   ORCID: orcid.org/0000-0003-4161-9697 1  

BMC Geriatrics volume  23 , Article number:  444 ( 2023 ) Cite this article

1814 Accesses

2 Altmetric

Metrics details

The prescription of psychotropic medication to older people living with dementia in residential aged care has become an increasing concern. The use of prescription medication is often prefaced as a way of preventing harm to self and others. However, the use of such medications has been considered a way of managing some of the behavioural and psychological symptoms of dementia. Using a large secondary data set, this study aimed to identify the precursors and mediating factors that influence the use of chemical restraint of older people in residential aged care.

Publicly available documents from the Australian Royal Commission into Aged Care Quality and Safety were used as the data corpus for this study. Keywords were used to search over 7000 documents to extract a set of topic-related content. We identified the cases of seven people in respite or permanent residential aged care who had been prescribed or administered psychotropic medication under circumstances that appeared to demonstrate chemical restraint. All documents relating to the cases were collated for our data set. A descriptive case study approach to analysis was taken.

Four key descriptive patterns were identified: labelling and limits to tolerance, pushing prescription as a solution, coverups and avoiding consent, and family’s fight for liberty. Triangulation across the data and academic literature supports the findings.

Our findings provide some insight into how chemical restrain happens. Featuring throughout the cases were reports of a lack of workforce capacity to care for and support residents exhibiting dementia behaviours. Prescription of psychotropic medications featured as a “first resort” care solution. Family and friends found such approaches to care unacceptable and frequently challenged the practice. Where consent for prescription was explicitly denied, more covert approaches are demonstrated. Family awareness, presence, and advocacy were key to challenging the practice of chemical restraint. Shortfalls in the capacity of the current workforce come into play here. However, workforce shortcomings can no longer mask this ubiquitous practice. Just as importantly the spotlight needs to be turned on the prescribers and the providers.

Peer Review reports

Following a series of aged care reviews [ 1 ] and investigative journalism exposés of substandard and abusive care in Australian residential aged care, in 2018, the Governor-General established a Royal Commission into Aged Care Quality and Safety (Henceforth Royal Commission). The public, including consumers of aged care, their families, carers, aged care workers, providers, and health professionals, were encouraged to make submissions, and over 10,000 submissions were received. Following Royal Commission guidelines, submissions and evidence of the proceedings have been made publicly available via the Royal Commission website [ 2 ]. In October 2019, the Royal Commission released a lengthy and damning three-volume Interim Report titled ‘Neglect’ [ 3 ]. One of the issues spotlighted in the Interim Report was the use of chemical restraint to manage behaviours, particularly of people with dementia living in residential care. The Interim Report stated: “Unfortunately, chemical and physical restraint is the easiest ‘care’ practice for many, but it is a pathway for people with dementia that is not in line with our human rights or best practice” [ 3 ]. The final report declared that urgent reforms were necessary to protect older people from the use of potentially harmful chemical restraint. However, further comments made in Commission documents permitted chemical restraint as part of an independently assessed behavioural support plan.

In Australia, the term “chemical restraint” refers to the inappropriate use of psychotropic medications such as antipsychotic, antianxiety, antidepressant, and sedative medications for the primary purpose of controlling or restricting a person’s behaviour or movement [ 4 ]. In contrast, the appropriate use of psychotropic medications for people living with dementia may occur where people have coexisting mental health conditions or distressing psychotic symptoms, or where people pose a threat to themselves or others. Australian practice guidelines recommend prescription should only be made following extensive consultation with the person living with dementia (or their substitute decision-maker), their family, the prescriber, and direct care providers. Additionally, guidelines stipulate that prescription should be regularly reviewed, and non-pharmacological strategies maintained [ 5 ]. The inappropriate use of psychotropic medicines as a way of managing dementia behaviours that may be challenging for caregivers to work with [ 6 ] is relatively common practice in Australian residential care [ 7 , 8 , 9 ] as well as internationally [ 10 , 11 , 12 ]. A recent review on the prevalence of psychotropic medication use in Australian aged care facilities showed that 13 − 42% of people in residential care were prescribed psychotropics such as antipsychotic and sedative medications at rates considerably higher than would be expected for appropriate treatment purposes [ 13 ]. Indeed, The Australian Government’s Aged Care Clinical Advisory Panel estimated that only 10% of the psychotropic medications used in residential aged care were justified in the course of treatment for mental health conditions and some rare symptoms associated with dementia [ 3 ].

Multiple antecedents have been cited for the use of chemical restraint in residential aged care, including client factors surrounding communication difficulties [ 9 , 14 ] behavioural and psychotic symptoms [ 10 , 15 , 16 , 17 ] as well as workforce factors including low staff to patient ratios [ 17 , 18 , 19 ], knowledge and skills mix [ 17 , 20 ], and workforce attitudes [ 21 ]. The use of restraint, both physical and chemical, is often premised on preventing harm to individuals and others [ 22 , 23 ] and, reducing falls risk [ 24 ]. However, chemical restraint can result in decreased functioning and physical deconditioning which may lead to falls as well as cognitive decline, [ 25 ] and can cause respiratory depression [ 26 ]. The use of antipsychotic medication has also been indicated to increase the risk of stroke and cardiovascular events for people living with dementia [ 27 , 28 ]. While something is known about the prevalence of chemical restraint, less is known about the more subtle precursors and mediating factors around the proposition of chemical restraint. Considering the attention already given to the topic, the publicly available evidence from the Royal Commission presented an opportunity to explore and describe in some detail the personal factors (both protective and risk) that influence the use of chemical restraint of older people in residential aged care.

The data used for this analysis is large-scale publicly available secondary qualitative data and presented a unique set of analytic challenges. In total, we had access to over 7,000 publicly available documents of various types from the Royal Commission web site; these included witness statements, hearing transcripts, and supporting evidence. Taking the scholar’s lens to the data ex post facto , and where there was no opportunity to dig deeper into the experience and complexity during interview or observation, Merriam’s definition of case study and pragmatist-constructivist approach was adopted [ 29 ]. Merriam’s epistemological stance assumes a reality that is both subjectively and socially constructed. Their approach to case study recognises a case as a bounded system of information upon which pragmatic analytic decisions, such as choice of quantitative or qualitative method, guide knowledge identification for progressing practical solutions. Our pragmatic-constructionist approach allows us to highlight the risk and protective factors that impact the use of chemical restraint at an individual level. For this investigation, a cross-case study approach using qualitative descriptive analysis emerged.

While the documents used in this study are freely available to the public, informants to the Royal Commission would not have anticipated their submissions and testimonies to be used for any other purpose, especially scholarly analysis. For this reason, we approached the Office of the Royal Commission and gained their approval to use the publicly available documents as data for our study. Due to many documents including overt identifiers and stories of vulnerable people, we also received full Human Research Ethics Council approval from our governing academic institution, including the waiver of consent requirement [ 30 ]. In reporting the data, as much as possible, we have maintained the contextual integrity of the evidence [ 31 ] and emulated the justice, beneficence, and respect afforded to all research participants. Guided by the work and recommendations of the Association of Internet Researchers [ 32 ], any identifying details have been kept to the minimum for descriptive purposes and we have omitted the names of people and institutions from extracts reported.

The documents used for this analysis comprise 227 verbatim transcripts of hearings where witnesses testified and were questioned by the Council Assisting the Commission and 5712 exhibits in the form of witness statements and documents supporting claims made at hearings. All data were downloaded into NVivo 12 [ 33 ], where we used keyword searches to identify relevant content [ 34 ]. Based on the literature and author experience, the research team developed an extensive list of 226 keywords relating to chemical restraint initiation, use, and outcomes. We used direct words such as chemical and restraint and names of psychotropic medications including antipsychotics, antidepressants, antianxiety, and sedative medicines, both generic and trade. We also searched for words associated with behavioural triggers for restraint, such as wander, shout, scream, aggressive, violent, hitting, biting, agitated, and anxious. Outcomes of the keyword searches allowed us to establish familiarity with the data and identify and isolate topic-relevant content. A large secondary data corpus requires a considered approach to enable content relevant to the research question to be identified. We drew on Davidson et al. [ 35 ] breadth and depth strategy which has been likened to stages of an archaeological survey. Our initial survey was broad; we examined the data for mentions of keywords across all document types. In reviewing the results, we noticed that particular people and stories began to reappear. It was here that we narrowed our focus and began looking in depth at specific cases to collate all case relevant data. This strategy revealed accounts of seven people who had been restrained (or restraint attempted) using psychotropic medications (see Table  1 for case details). All documents related to each person were captured to create our topic-specific dataset, and we took a cross-case study approach to analysis.

The contemporary view of case study is that it provides the means to explore complex issues, particularly when human behaviours and social interactions are fundamental to understanding [ 36 ]. Case study is also effective for investigating related processes and identifying contextual factors [ 37 ]. The case data we investigated had several features worthy of note. Our case data vary in range and depth and the range of perspectives contributing (for example, family members or health professionals). While each of our cases reflects the story of an individual, accounts are provided by other people as such the first-person perspective is absent. Aligned with Merriam’s pragmatist constructionist approach [ 29 ] we aimed to reveal the antecedents and processes involved in the chemical restraint of older people receiving residential care. Through cross-case analysis [ 38 ], we first categorised and ordered the data across 62 descriptive codes. From there, we connected the subject matter and propositions of the descriptive coding into four key patterns to provide explicit descriptions of the events and processes depicted in the cases. With multiple cases, we have triangulated across the data, and for rigour, we have cross-checked with the academic literature throughout our analysis [ 39 ].

Seven cases of people in residential care who were prescribed and/or administered psychotropic medication were identified from the data corpus. Three of the cases had been the subject of intense scrutiny at one of the Royal Commission hearings focused on restraint, and the remaining were from four separate hearings in different geographic locations identified through the keyword search. No other cases were identified in the data. The later accounts were not as dramatic but served to demonstrate that chemical restraint can happen in response to what may be considered minor transgressions of behaviour. In four cases, psychotropic medication was prescribed without the knowledge or consent of next-of-kin. All cases included pejorative language to describe dementia behaviours, for example, “wanderer,” “aggressive,” “resistive,” or “combative”, with such language adopted by Counsels Assisting in questions during the hearings. Through our analysis, we demonstrate the problematic and contested nature of these terms with the use of “quotation marks” although some terms may be reproduced in direct extracts throughout our analysis.

Across the seven cases, similarities were identified in the precursors and processes that resulted in as well as challenged chemical restraint. We identified four key patterns of action repeated in the data: labelling and limits of tolerance, pushing prescription as a solution, coverups and avoiding consent, and lastly, family’s fight for liberty. In addition to extracts from the data, our analysis presents findings from the academic literature to demonstrate what is already known about the topics and determine where we identified new information. We have found on presenting this work to colleagues that the findings do ‘ring true’ with clinical experience and, in that way, contribute to documenting knowledge that is known but not published. To protect the identity of Royal Commission informants, extracts are referred to by data source only.

Labelling and limits to tolerance

In all seven cases, the individual’s behaviours were recognised as the precursor which led to the recommendation and/or administration of psychotropic medication as a means of restraint. Antecedents across the cases related to personal characteristics of the case and the care workforce response. Where older people exhibited behaviours that were identified as uncooperative in the context of the scheduled provision of care, such behaviours were labelled “aggressive”. In addition, behaviours such as calling out and walking around the facility or “wandering” were portrayed as particularly problematic, as indicated by the following extracts.

“He was resistant at times to get up in the morning, like many of us, but often that would relate to the nature of his sleep the night before. They did use the word, that he was showing aggression, and we really questioned that. Resistance is a different thing, I think, altogether than aggression.” (hearing transcript) “I was told he was not going to the dining room when asked, not coming in from the garden when asked or was walking around during the night.” (witness statement)

In several of the cases, family members either did not see the reported behaviours in situ or they did not consider the re-counted actions to be defiant or combative. Some family members reflected that they did not see resident behaviours as unduly problematic, assuming care staff would have the experience and capacity to work with behavioural symptoms of conditions such as dementia.

“The nurse manager reported the behaviour of concern was that of my mother calling out and screaming. I never saw any evidence of this and was actually quite surprised it was an issue as I had observed a number of residents in high care always calling out and screaming day and night.” (witness statement) “Given that the wandering is part and parcel of the illness of dementia, I assumed that the facility would be best placed to manage any problems that arose from her wandering – this was not the case.” (witness statement) “They were supposed to be a dementia specific facility. After two weeks the nurse wanted to medicate/sedate him.” (witness statement)

Using language such as “wandering” and “aggressive” to label resident behaviours as problematic was common. Indeed, reports of “wandering” [ 40 ], general agitation [ 10 ], and verbal agitation [ 15 ] have all been associated with the use of psychotropic drugs in residential aged care. It is noteworthy that in some instances, family members did not see resident behaviours in the same light as care workers. People reported surprise at how specific actions, such as walking around, had been problematised. Families shared the expectation that facilities, some of which were recommended for their specialist care, and their workforces would have the expertise to work appropriately “with” older people, particularly older people with dementia who could no longer be cared for at home.

Pushing prescription as a solution

Once resident behaviours had been identified and labelled problematic, agents of the facilities in these cases put forward the use of prescription medication as an acceptable way of behaviour management, and approval for prescription medications was sought from family members. Across the cases, the most common recommendation was for prescription of risperidone (also Risperdal), an atypical antipsychotic medication endorsed for people with schizophrenia, bipolar disorder, or irritability associated with autistic disorder to improve thinking, mood, and behaviour [ 41 ]. As the following extracts indicate, prescription requests were positioned within a care framework, as a way of avoiding potentially harmful behaviours and rationalised as in the resident’s best interest.

“… the wandering was creating a risk of falling … it was in [resident’s name] best interest and for the sake of his safety that risperidone was increased.” (witness statement) “He told me that my mother’s safety came first and that is why he supported the administration of risperidone to her.” (witness statement)

In many cases, family members reported experiencing pressure from direct care workers and medical professionals to approve prescription medication. In cases where family members denied initial requests for consent, requests were often repeated. In the case presented below, an ultimatum, an action akin to bullying, resulted in much needed respite care being denied.

“[family] We said ‘no’ on numerous occasions … [counsel assisting] and when you say ‘on numerous occasions’ – is that because the facility was encouraging the prescription of risperidone … [family] yes.” (hearing transcript) “I was then told that either I agree to the locum medicating with whatever he/she chose to give him or I ‘come and take [resident] home’. Therefore, [resident’s] stay was cut short, and I had no choice but to take him home and manage as best I could.” (witness statement)

Amongst the cases, family members reported being sceptical of intentions to administer medication, knowing that the medication would subdue the resident, with one family member referring to the practice as “behavioural euthanasia”. Families suspected that suggestions to medicate were not in the interest of the individual’s wellbeing but rather as a strategy for easier and uncomplicated care provision.

“I asked the nurses, What did you give her and why? and I was basically told. This is for her behaviour, If we do not give it to her, she will be out of control.” (hearing transcript) “In short, Risperidone was clearly administered at and for the convenience of [facility name], not as a medical treatment” (hearing transcript) “I also mentioned about his recommendation to sedate dad. [son] believed that such a prescription might result in behavioural euthanasia” (witness statement)

In a pattern similar to that reported in the “limits of tolerance” finding above, family members again cast doubt over workforce and facility capacity. Here, concerns turned to the penchant to default to prescription medication rather than engage in alternate (nonpharmacological) strategies. In many cases, alternate strategies had been espoused to family members as available and the option of first choice for care provision.

“Oxazepam was to be used in treating my mother only when behavioural strategies had not been successful. I never saw any attempt to use behavioural strategies with my mother.” (witness statement)

Oxazepam is a class of benzodiazepine that works by slowing brain activity to induce relaxation and sedation [ 42 ]. A noted side effect of Oxazepam is unsteadiness and a tendency to fall [ 43 ]. Similarly, risperidone is known to cause sleepiness, agitation, and dizziness, side effects that may make people prone to falls. While risperidone is approved to treat behavioural symptoms of dementia in Australia, it is recommended as a second line-treatment only and to be used after nonpharmacological methods have been extensively trialled [ 44 ]. Elsewhere, including in the USA, risperidone is not approved for use with people who have dementia due to safety concerns [ 45 ] and that risperidone is often prescribed off-label [ 46 ]. From the informants’ accounts medication appeared to be the first treatment option and not the ‘last resort’ they had expected it to be.

Across all cases, family members expressed concern that medications were pushed for the benefit of the workforce rather than the benefit of the resident. Implicit was the perception that the current workforce lacked the skill, time, training, and or compassion to provide appropriate person-centred care and support. The research literature presents several workforce factors which are associated with high psychotropic medication use in residential aged care, including limited knowledge of behavioural and psychological symptoms among workers, low staff/resident ratio, and lack of access to psychologists or psychogeratricians in residential care [ 17 ]. Workloads that do not allow time for non-pharmacological care and limited staff education on dementia has also been linked to medication as a default response to behavioural and psychological symptoms of dementia [ 19 ]. Negative staff attitudes toward older people with dementia and labelling behaviours as disruptive and challenging have similarly been associated with higher incidents of chemical and/or physical restraint [ 21 ]. While the literature accounts for the role of workforce factors, less appears to be known about family perspectives of pressure to prescribe and the experience of contesting to the administration of psychotropic medication.

Coverups and avoiding consent

Despite withholding consent, prescribing medication to modify resident behaviour often went ahead. In four of the seven cases, prescriptions were administered without the knowledge and consent of the family. Family members voiced concerns over such practices believing that in their role of next-of-kin, or medical power of attorney, medication should not be prescribed without their informed consent. Some family members seemed to have been kept out of the conversation altogether to the extent that they lacked knowledge about psychotropic medications. In contrast, others who previously had medication related conversations found their agreements and assurances had been disregarded. The following extracts also indicate a lack of transparency around the prescription process.

“… when I arrived on the Sunday, the RN [registered nurse] on duty just mentioned to me saying ‘she’s on some new drugs’. I said, ‘what drugs?’ and they said, ‘It’s risperidone’ and I said, ‘what’s that?” (hearing transcript) “I was given no explanation as to why they had commenced a new medication without discussing it with me … I reminded her [doctor] that she had agreed that ‘nothing new’ in the way of medications would be prescribed … That was our agreement on admission.” (witness statement) “We became suspicious that he was being given something … my sister and I asked to see the charts, where we did see that risperidone had been dispensed to my dad.” (hearing transcript)

In addition to the practice of prescribing without consent, evidence from the cases suggested a culture of concealment and poor communication between the workforce at all levels and family members. Family members were disappointed and unconvinced that interactions were ethical and truthful.

“And often when I would ask, ‘has he had any extra medication?’ I would be told no, they did not think so, that he had just had a bad night, and he was very tired. But then when I would check closer … I would find that he had, in fact, had extra.” (hearing transcript) “Over a number of weeks and months, I tried to ascertain why and how my mum had been prescribed risperidone. I pursued the matter with the then director … I never received a satisfactory explanation.” (witness statement)

For one case, where the family had not approved psychotropic medication, a workaround appeared to have been put in place. In this instance, pain medication in the form of a fentanyl patch was prescribed because the resident “could have been in pain” (witness statement) despite the resident being cleared of pain the previous day. An opioid, fentanyl is recommended for cases of severe pain where other medications have been ineffective; side effects can include drowsiness, confusion, and lack of balance [ 47 ].

“He was on fentanyl patches. They said it was for pain, but it wasn’t; it was to manage him. They were sedating him … one of the staff said angrily to me – How else am I going to manage him?” (hearing transcript)

This example shows the extent to which members of the workforce will go in order to bring resident behaviour in line with capacity to provide care. Using a strong opioid for a condition that “could” be, is tantamount to using a medication other than for medical treatment. If this is the intention, such action raises particular concern as using medication in this way is something that sits outside of the consent guidelines. The practice of chemical restraint cannot be consented to by the person responsible for the prescription or the appointed guardian [ 48 ]. This unique data set has given us some insight into an alarming pattern of considered actions designed to sedate dementia behaviours deemed too difficult to work. Such actions are imposed upon people already considered vulnerable and without the capacity to provide informed consent and against the expressed wishes of family members. Informed consent for medication is governed by State and Territory Laws. When a person cannot give their own consent, a legally defined substitute decision-maker, such as the person responsible, attorney, or guardian, needs to provide consent. Informed consent cannot be provided by staff members, allied health professionals, or the provider on behalf of the person [ 49 , 50 , 51 ]. Psychotropic medication has a history of use in the treatment of dementia behaviours within residential aged care in Australia [ 13 , 52 ] and in other countries [ 53 , 54 , 55 ]. Some of this history includes the use of antipsychotics, without consent from the family, next of kin, or those holding power of attorney [ 7 , 19 , 51 , 56 ]. Relatives of people living with dementia in Australian residential aged care homes are documented as expressing their frustrations to learn that psychotropics were administered without their knowledge [ 19 ]. In some cases, there have been no records of consent for antipsychotics administered to older people, and in some cases, antipsychotic drugs were prescribed despite families refusing to consent [ 7 ].

Family’s fight for liberty

So far, we have documented concerns about how psychotropic medications were pushed onto older people without family approval. Here we present the mitigating factors, namely family involvement that challenged the prescription and administration of chemical restraints. Across the cases, the reasons for not wanting the older person to be prescribed psychotropic medications were that such medication would negatively impact the individual’s quality of life. It was evident through the witness statements that family members wanted their loved ones to preserve their current level of functioning for as long as possible. As already discussed, family members believed that residential care would offer a level of support that could accommodate the dementia behaviours that they could no longer manage at home. As indicated by the first extract, family members were willing to sacrifice some risk to maintain dignity and quality of life.

“Dad was falling quite a bit … but he never broke anything … we told them that we would rather have dad risk falling than have him chemically restrained with medication.” (witness statement) “I also made it clear to [Dr] that myself and my siblings did not want him medicated as it would adversely affect his quality of life.” (witness statement)

Despite different levels of health literacy around dementia care, families used the strategies and resources at their disposal to advocate for the support and dignity of their loved ones. As the following extracts demonstrate, some families had access to experts from whom they sought guidance and support to block the administration of medication. Other families used their physical presence to supervise and subvert chemical restraint.

“Both my parents worked in the health sector, and one of my uncles is a psychiatrist. We have family friends who are GP’s and specialists and I queried them about the of using a medication such as risperidone.” (witness statement) “[daughter] has decides that she will try and visit her mother (and ask brothers to also visit) at around the time she receives her medication to monitor for over sedation.” (Exhibit)

Although engaging residential care services for respite or permanent support, this was not a time of rest for family members. In one case of respite care, a family member was repeatedly notified about “problematic” behaviour, in other cases, families had to work hard to ensure that alternative treatments and approaches of care were used in favour of chemical restraint.

“While [resident’s name] was there, I received phone calls from the nurse five to six times per day telling me of things that they [the resident] had done.” (witness statement) “I worked really hard in conjunction with the facility and with his carers that we devised a plan to minimise the frustration that he had … but that took a lot of work.” (witness statement)

Placing a family member in residential care is a complex decision [ 57 , 58 , 59 ]. In instances of cognitive impairment, families take on the caring role until they can no longer do so [ 59 , 60 ]. When the move to residential care is made, even for respite purposes, it is reasonable to expect that the host facility can meet individual’s needs and that the role of the family in care provision can be reduced. In the examples provided here, this has not been the case. Family members have had to work hard to fight for the rights of their loved ones as well as consistently monitor residential care delivery. Family members with neither the clinical knowledge nor appropriate supports have spoken out to challenge the intentions of care support workers and health practitioners.

While family involvement following the placement of a relative with dementia into care has been shown to help improve family staff relationships and communication and improve the quality of life for the resident [ 61 ], the type of vigilance and advocacy that is evidenced here goes beyond what family members had anticipated. The expectation of being able to rely on the knowledge, skills, and capacity of the care support workforce to be able to provide care that supports quality of life has not been met. Indeed, previous Australian research has shown that lack of staff responsiveness is the reason why families need to intervene and advocate for the rights of the person receiving care [ 62 ]. This raises the question, what happens to older people who do not have family or friends with the knowledge and resources to advocate for their needs?

The Royal Commission reports (both interim and final) provided frequent general references to the use, misuse, and general lack of monitoring or regulation for restraints and for chemical restraint use. While the Royal Commission made recommendations for better dementia care the term “chemical restraint” was used just once within the 148 recommendations, and it was in the context of recommending use “only if prescribed by a doctor who has documented the purpose of the prescription” [ 63 ]. As our findings have demonstrated, any level of endorsement may be all that is needed for chemical restraint to be used as a “first resort” option for care. This study aimed to analyse the Royal Commission evidence to describe circumstances that the public identified as influencing psychotropic prescriptions for older people in residential aged care. To do this, we have explored the data of seven individuals whose families, we can presume in the hope of making a difference, submitted their stories of unacceptable care to the Royal Commission.

Caring for older people with dementia can be challenging for informal and formal carers alike [ 64 , 65 , 66 ]. Where families can no longer provide care and support in the home, alternate residential care can be necessary, on a permanent or respite basis. Our findings indicate that the families represented in our cases have enlisted residential care with the belief and expectation that professional and specialist care would be provided at a level that met the needs of their family members. In all cases, expectations of care and support have not been met. In addition, due to the constant vigilance required to ensure care, families seeking respite had no reprieve, and those seeking a more permanent care solution remained physically present to ensure appropriate care, consequences which were neither anticipated nor practical. As mentioned, the families reflected in our cases, to varying degrees, remained highly active in their loved one’s care following transfer to residential care. However, such familial support may not be available to everyone, nor we argue, should it be required to ensure appropriate dementia care and support are delivered. With close to 40% of people in residential care in Australia not having visitors [ 67 ] we cannot rely on the presence of family and friends to monitor care. It is important that trust is re-established and for appropriate person-centred dementia care and support to be delivered regardless of external presence and advocacy.

Decrease in the use of physical restraints in residential aged care has been linked to the increasing use of chemical restraints [ 68 ] and our findings are a further indication of this trend. Any discussion of chemical restraint and informed consent must acknowledge the inherent paradox. As mentioned, using a medication for a purpose other than medical treatment, for example to modify behaviour, is something that cannot be consented to [ 48 ]. Therefore, it stands that informed consent can neither legitimately be sought nor provided for chemical restraint. This may be why, in more than half of our cases medications were prescribed or administered without the knowledge of family members. This may also explain the extent to which “work arounds” such as pain medication were used to effect behaviour modification. We acknowledge that there are legitimate circumstances for psychotropic medications to be used in the treatment of dementia behaviours. However, such prescription needs to be considered a last resort and involve consultation with experienced specialists such as psycho-geriatricians [ 5 ]. There was no mention of such a consultation process in any of our cases. Also absent from our evidence is any attempt to consult with the person living with dementia by clinical staff or families. While there may be fluctuation in decision making capacity, it should not be assumed that people living with dementia cannot make or contribute to decisions about their own medical treatment, including decisions around medications [ 5 ].

We are neither the first to use evidence from this Royal Commission for scholarly analysis [ 69 , 70 ], nor are we the first to investigate the topic of dementia behaviours and restraint [ 71 ]. However, to our knowledge, we are the first to systematically search all the hearings and exhibits and perform in-depth qualitative analysis. Despite limited prior examples of how to analyse large qualitative data sets our comprehensive search strategy and methodical approach to data extraction gives us confidence that we have captured and analysed the data most relevant to our aim. In addition, our explicit consideration for the ethical implication of using this data has not previously been contemplated [ 69 , 71 ] and is also to date, unique to our methodological and analytical approach [ 72 ]. Our analysis has taken seven stories and applied a scholarly lens to the data while at the same time respecting the privacy of the informants and the sensitive nature of all their accounts. In line with our pragmatist constructionist approach, we have added to what is known about the precursors and practices of chemical restrain in Australian residential aged care.

This secondary analysis aimed to make use of an unprecedented collection of accounts of aged care in Australia. However, we must acknowledge that data of this scale and type has inherent limitations and constraints. Our pragmatist approach to the data meant we focused our attention on cases. While we were able to produce an in-depth analysis, and are confident that we captured vital content, we do not claim to have captured everything that could be known from the data corpus. Our analysis is inherently limited to the evidence presented to the commission and the investigative direction of the Council Assisting. Our cases also varied in their volume and sources. We could not ask questions of the informants or delve further into any issues. The evidence presented to the Royal Commission has been generated by a specific ‘data-public’ [ 73 ] a group of people with a vested interest in a topic. In this instance, the data comes from people who have had previous negative experiences in the aged care system, and who care enough to submit their stories to a public forum, as such our data comes with an inherent bias. We know that best practice in health and social research includes the voice of the persons impacted [ 74 , 75 ]. For a typical qualitative investigation on dementia and restraint, such investigation would ideally involve the voice of the older person. The voices included in our analysis are those that tell a story about an older person, they are not first-person accounts. While this is not an intentional exclusion, we acknowledge that our conclusions and recommendations are constrained by the voices contained.

Eliminating the use of chemical restraint in residential aged care will be a complex undertaking, requiring change on multiple levels and from many people. Increasing workforce capacity in terms of number and skill set has been a central recommendation from the Royal Commission [ 62 ]. However, more is needed to support older people in residential care and their families. Regarding workforce education, staff empathy and knowledge of restraint regulations and the dangers of restraint use are essential starting points [ 19 ]. Raising the public’s awareness and educating family and friends will be more complex. Our evidence shows that there are family members who can recognise the signs and symptoms of chemical restraint. However, relying on family to be able to observe the impact of medication is not a solution. It is also clear that there is work to be done on the language used to describe dementia behaviours. As noted, the Commissioners and the Counsel Assisting adopted the terms “wandering” “aggressive” and “challenging” when summarising response. The use of such language not only dehumanises the individual but it also pathologises behaviours typically associated with dementia and reinforces the need for a pharmacological response [ 71 ]. Changing the way dementia responses and behaviours are perceived both medically and publicly will be imperative for changing the way people with dementia are supported in residential care as well as in their homes and communities.

Data availability

All data used for this project is publicly available from https://agedcare.royalcommission.gov.au/ .

Royal Commission into Aged Care Quality and Safety. Background Paper 8: A History of Aged Care Reviews 2019. Available online: https://agedcare.royalcommission.gov.au/publications/background-paper-8-history-aged-care-reviews . (Accessed 18 August 2022).

Royal Commission into Aged Care Quality and Safety. Royal Commission into Aged Care Quality and Safety 2022. Available online: https://agedcare.royalcommission.gov.au . (Accessed 18 August 2022).

Royal Commission into Aged Care Quality and Safety. Interim Report 2019b. Available online: https://agedcare.royalcommission.gov.au/publications/interim-report . (Accessed 18 August 2022).

Department of Social Services. National Framework for Reducing and Eliminating the Use of Restrictive Practices in the Disability Service Sector. 2013. Available online: https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/national-framework-for-reducing-and-eliminating-the-use-of-restrictive-practices-in-the-disability-service-sector . (Accessed 25 March 2023).

The Guideline Development Group. Clinical practice guidelines for the appropriate use of psychotropic medications in people living with dementia and in residential aged care. Parkville: Monash University; 2022.

Google Scholar  

Pu L, Moyle W. Restraint use in residents with dementia living in residential aged care facilities: a scoping review. J Clin Nurs. 2020.

Harrison F, Cations M, Jessop T, Aerts L, Chenoweth L, Shell A, et al. Prolonged use of antipsychotic medications in long-term aged care in Australia: a snapshot from the HALT project. Int Psychogeriatr. 2020;32(3):335–45.

Article   PubMed   Google Scholar  

Peisah C, Skladzein E. The Use of Restraints and Psychotropic Medications in People with Dementia. Australia; 2014. Available online: https://www.dementia.org.au/sites/default/files/20140321_Publication_38_A4_print%20version_Web.pdf . (Accessed 20 August 2022).

Runci SJ, Eppingstall BJ, O’Connor DW. A comparison of verbal communication and psychiatric medication use by Greek and italian residents with dementia in australian ethno-specific and mainstream aged care facilities. Int Psychogeriatr. 2012;24(5):733–41.

Schildmann E, Meesters S, Grüne B, Bolzani A, Habboub B, Hermann A, et al. Sedatives and sedation at the end of life in nursing Homes: a retrospective Multicenter Cohort Study. J Am Med Dir Assoc. 2021;22(1):109–16e1.

Zahirovic I, Torisson G, Wattmo C, Londos E. Psychotropic and anti-dementia treatment in elderly persons with clinical signs of dementia with Lewy bodies: a cross-sectional study in 40 nursing homes in Sweden. BMC Geriatr. 2018;18:1.

Article   Google Scholar  

Øye C, Jacobsen FF, Mekki TE. Do organisational constraints explain the use of restraint? A comparative ethnographic study from three nursing homes in Norway. J Clin Nurs. 2017;26(13–14):1906–16.

Westaway K, Sluggett J, Alderman C, Moffat A, Procter N, Roughead E. The extent of antipsychotic use in australian residential aged care facilities and interventions shown to be effective in reducing antipsychotic use: a literature review. Dement (London). 2020;19(4):1189–202.

Runci SJ, Redman JR, O’Connor DW. Language use of older italian-background persons with dementia in mainstream and ethno-specific residential care. Int Psychogeriatr. 2005;17(4):699–708.

Mulders AJMJ, Fick IWF, Bor H, Verhey FRJ, Zuidema SU, Koopmans RTCM. Prevalence and correlates of neuropsychiatric symptoms in nursing home patients with Young-Onset Dementia: the BEYOnD Study. J Ame Med Dir Assoc. 2016;17(6):495–500.

Koopmans R, Reinders R, van Vliet D, Verhey FRJ, de Vugt ME, Bor H, et al. Prevalence and correlates of psychotropic drug use in community-dwelling people with young-onset dementia: the NeedYD-study. Int Psychogeriatr. 2014;26(12):1983–9.

Smeets CHW, Smalbrugge M, Zuidema SU, Derksen E, de Vries E, van der Spek K, et al. Factors related to psychotropic drug prescription for neuropsychiatric symptoms in nursing home residents with dementia. J Am Med Dir Assoc. 2014;15(11):835–40.

Zuidema SU, de Jonghe JFM, Verhey FRJ, Koopmans RTCM. Psychotropic drug prescription in nursing home patients with dementia: influence of environmental correlates and staff distress on physicians’ prescription behavior. Int Psychogeriatr. 2011;23(10):1632–9.

De Bellis A, Bradley S, Xiao D, Belan I, Wallace T. Antipsychotic use for behaviours by persons with dementia in residential aged care: the relatives’ perspectives. Aust J of Adv Nurs. 2017;35(1):23–32.

Anderson K, Bird M, MacPherson S, Blair A. How do staff influence the quality of long-term dementia care and the lives of residents? A systematic review of the evidence. Int Psychogeriatr. 2016;28(8):1263–81.

Nakahira M, Moyle W, Creedy D, Hitomi H. Attitudes toward dementia-related aggression among staff in japanese aged care settings. J Clin Nurs (Wiley-Blackwell). 2009;18(6):807–16.

Bowblis JR, Crystal S, Intrator O, Lucas JA. Response to regulatory stringency: the case of antipsychotic medication use in nursing homes. Health Econ. 2012;21(8):977–93.

Gunawardena R, Smithard DG. The Attitudes towards the Use of Restraint and restrictive intervention Amongst Healthcare Staff on Acute Medical and Frailty Wards-A brief literature review. Geriatr (Basel). 2019;4(3):50.

Maker Y, McSherry B. Regulating restraint use in mental health and aged care settings: Lessons from the Oakden scandal. Altern Law J. 2018;44(1):29–36.

Foebel AD, Onder G, Finne-Soveri H, Lukas A, Denkinger MD, Carfi A, et al. Physical Restraint and antipsychotic medication use among nursing home residents with dementia. J Am Med Dir Assoc. 2016;17(2):184e9–14.

Muir-Cochrane E, Oster C, Gerace A, Dawson S, Damarell R, Grimmer K. The effectiveness of chemical restraint in managing acute agitation and aggression: a systematic review of randomized controlled trials. Int J Ment Health Nurs. 2020;29(2):110–26.

BMJ Group. How safe are antipsychotics in dementia? Drug Ther Bull. 2007;45(11):81–5.

Koponen M, Rajamaki B, Lavikainen P, Bell JS, Taipale H, Tanskanen A, et al. Antipsychotic use and risk of Stroke among Community-Dwelling People with Alzheimer’s Disease. J Am Med Dir Assoc. 2022;23(6):1059–65e4.

Merriam SB. Qualitative research and case study participants in education. 2nd ed. San Francisco: Jossey-Bass Publishers; 1998.

National Health and Medical Research Council. National Statement on Ethical Conduct in Human Research. 2018. Available online: https://www.nhmrc.gov.au/about-us/publications/national-statement-ethical-conduct-human-research-2007-updated-2018 . (Accessed 20 June 2022).

Nissenbaum H. Privacy as contextual integrity. Wash L Rev. 2004;79:119–58.

Franzke AS, Bechmann A, Zimmer M, Ess C. Association of Internet Researchers. Internet Research: Ethical Guidelines. 2020. Available online: https://ahrecs.com/resources/internet-research-ethical-guidelines-3-0-association-of-internet-researchers-aoir-october-2019/ . (Accessed 20 June 2022).

QSR International. NVivo 12 Plus 2020. Available online: https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home .

Seale C, Charteris-Black J. Keyword analysis: a new tool for qualitative research. In: Bourgeault IL, Dingwall R, De Vries RG, editors. The sage handbook of qualitative methods in health research. London: Sage; 2012. pp. 536–56.

Davidson E, Edwards R, Jamieson L, Weller S. Big data, qualitative style: a breadth-and-depth method for working with large amounts of secondary qualitative data. Qual Quant. 2019;53(1):363–76.

Harrison H, Birks M, Franklin R, Mills J. Case study research: foundations and methodological orientations. Forum Qual Soc Res. 2017;18(1).

Merriam SB. A guide to design and implementation. 3rd. ed: San Francisco, CA: Jossey-Bass; 2009.

Yin RK. Case study research and methods. 5th. ed: California: Sage; 2014.

Simons H. Case study research in practice. London: Sage; 2009.

Book   Google Scholar  

Pitkala KH, Laurila JV, Strandberg TE, Tilvis RS. Behavioral symptoms and the administration of psychotropic drugs to aged patients with dementia in nursing homes and in acute geriatric wards. Int Psychogeriatr. 2004;16(1):61–74.

Article   CAS   PubMed   Google Scholar  

National Alliance on Mental Illness. Mental Health Medications. 2016. Available online: https://www.nami.org/About-Mental-Illness/Treatments/Mental-Health-Medications/Types-of-Medication/Risperidone-(Risperdal ). (Accessed 19 January 2023).

MedlinePlus O. 2021. Available online: https://medlineplus.gov/druginfo/meds/a682050.html . (Accessed 19 May 2023).

Dementia Australia. Help sheets - Dementia Q&A. Drugs used to relieve behavioural and psychological symptoms (changed or responsive behaviours) of dementia n.d. Available online: https://www.dementia.org.au/sites/default/files/helpsheets/Helpsheet-DementiaQandA04-DrugsUsedToRelieveBehaviouralAndPsychologicalSympoms_english.pdf . (Accessed 19 January 2023).

Dementia Australia. Help sheets - Dementia Q&A. Risperidone for treatment of behavioural symptoms in dementia n.d. Available online: https://www.dementia.org.au/sites/default/files/annual-reports/Helpsheet-DementiaQandA05-Risperidone_english.pdf . (Accessed 19 January 2023).

Yunusa I, El Helou ML. The use of risperidone in behavioral and psychological symptoms of dementia: a review of Pharmacology, clinical evidence, Regulatory Approvals, and off-label use. Front Pharmacol. 2020;11:596.

Article   CAS   PubMed   PubMed Central   Google Scholar  

Maher AR, Maglione M, Bagley S, Suttorp M, Hu JH, Ewing B, et al. Efficacy and comparative effectiveness of atypical antipsychotic medications for off-label uses in adults: a systematic review and meta-analysis. JAMA. 2011;306(12):1359–69.

Healthdirect. Fentanyl 2021 Available online: https://www.healthdirect.gov.au/fentanyl#side-effects . (Accessed 19 January 2023).

Guardianship Act 1987, (2021). Available online: https://legislation.nsw.gov.au/view/html/inforce/current/act-1987-257 . (Accessed 6 April 2023).

Aged Care Quality and Safety Commission. Consent for medication in aged care - fact sheet n.d. Available online: https://www.agedcarequality.gov.au/sites/default/files/media/consent-for-medication-in-aged-care-fact-sheet_0.pdf . (Accessed 19 January 2023).

Dementia Australia. Medical consent n.d. Available online: https://www.dementia.org.au/planning-ahead/their-plans/minimal-capacity/medical-consent . (Accessed 19 January 2023).

Peisah C, Jessop T. Australia’s problem with obtaining consent for psychotropic use in older people. Intern Med J. 2021;51(4):604–7.

Kalisch Ellett LM, Kassie GM, Pratt NL, Kerr M, Roughead EE. Prevalence and duration of use of Medicines recommended for short-term use in aged care facility residents. Pharm (Basel). 2019;7(2).

Helvik A-S, Šaltytė Benth J, Wu B, Engedal K, Selbæk G. Persistent use of psychotropic drugs in nursing home residents in Norway. BMC Geriatr. 2017;17(1):52.

Article   PubMed   PubMed Central   Google Scholar  

Petek Šter M, Cedilnik Gorup E. Psychotropic medication use among elderly nursing home residents in Slovenia: cross-sectional study. Croat Med J. 2011;52(1):16–24.

Rojas-Fernandez C, Mikhail M, Brown SG. Psychotropic and cognitive-enhancing medication use and its documentation in Contemporary Long-term Care Practice. Ann Pharmacother. 2014;48(4):438–46.

Rendina N, Brodaty H, Draper B, Peisah C, Brugue E. Substitute consent for nursing home residents prescribed psychotropic medication. Int J Geriatr Psychiatry. 2009;24(3):226–31.

Caron CD, Ducharme F, Griffith J. Deciding on institutionalization for a relative with dementia: the most difficult decision for caregivers. Can J Aging. 2006;25(2):193–205.

Chang Y-P, Schneider JK. Decision-making process of nursing home Placement among Chinese Family Caregivers. Perspect Psychiatr Care. 2010;46(2):108–18.

Kwon S-H, Tae Y-S. Nursing Home Placement: the process of decision making and adaptation among adult children caregivers of demented parents in Korea. Asian Nurs Res. 2012;6(4):143–51.

McLennon SM, Habermann B, Davis LL. Deciding to institutionalize: why do family members cease caregiving at home? J Neurosci Nurs. 2010;42(2):95–103.

Hayward JK, Gould C, Palluotto E, Kitson E, Fisher ER, Spector A. Interventions promoting family involvement with care homes following placement of a relative with dementia: a systematic review. Dement (London). 2021;21(2):618–47.

Fetherstonhaugh D, Rayner J-A, Solly K, McAuliffe L. You become their advocate’: the experiences of family carers as advocates for older people with dementia living in residential aged care. J Clin Nurs. 2021;30(5–6):676–86.

Royal Commission into Aged Care Quality and Safety. Final Report - List of Recommendations. 2021c. Available online: https://agedcare.royalcommission.gov.au/publications/final-report-list-recommendations . (Accessed 20 January 2023).

Ainamani HE, Alele PE, Rukundo GZ, Maling S, Wakida EK, Obua C et al. Caring for people with dementia in rural Uganda: qualitative study of caregiving burden experienced by informal and formal caregivers. J Glob Health Rep. 2020;4.

Lindeza P, Rodrigues M, Costa J, Guerreiro M, Rosa MM. Impact of dementia on informal care: a systematic review of family caregivers’ perceptions. BMJ Support Palliat Care. 2020:bmjspcare–2020.

Miyamoto Y, Tachimori H, Ito H. Formal caregiver burden in dementia: impact of behavioral and psychological symptoms of dementia and activities of daily living. Geriatr Nurs. 2010;31(4):246–53.

Yaxley L. Upto 40 per cent of aged care residents get no visitors in 2017. Available online: https://www.abc.net.au/news/2017-10-25/aged-care-residents-suffering-from-loneliness,-ken-wyatt-says/9085782 . (Accessed 30 March 2023).

Konetzka RT, Brauner DJ, Shega J, Werner RM. The effects of public reporting on physical restraints and antipsychotic use in nursing home residents with severe cognitive impairment. J Am Geriatr Soc. 2014;62(3):454–61.

Austen K, Hutchinson M. An aged life has less value: a qualitative analysis of moral disengagement and care failures evident in Royal Commission oral testimony. J Clin Nurs. 2021;30(23–24):3563–76.

Atee M, Andreotta M, Lloyd R, Whiting D, Alford M, Morris T. Does pain matter in the australian Royal Commission into aged Care Quality and Safety? A text mining study. AHR. 2023;3(1):100126.

Chelberg K. ‘Vulnerable monsters’: Constructions of Dementia in the australian Royal Commission into aged care. Int J Semiot Law. 2023.

Cain P, Alan J, Porock D. Emergency department transfers from residential aged care: what can we learn from secondary qualitative analysis of australian Royal Commission data? BMJ Open. 2022;12(9):e063790.

Madsen AK, Munk AK. Experiments with a data-public: moving digital methods into critical proximity with political practice. Big Data Soc. 2019;6(1):2053951718825357.

Prior SJ, Mather C, Ford K, Bywaters D, Campbell S. Person-centred data collection methods to embed the authentic voice of people who experience health challenges. BMJ Open Qual. 2020;9(3).

Saigle V, Miller J, Dumez V, Patrick K. Embedding patient voices in CMAJ. CMAJ. 2021;193(27):E1046–e7.

Download references

Acknowledgements

We thank the office of the Australian Royal Commission into Aged Care Quality and Safety for the support provided to this project. The author’s views expressed in this manuscript and any views expressed by others during the Australian Royal Commission into Aged Care Quality and Safety do not necessarily reflect the views of the Commissioners that presided over this public enquiry. We acknowledge the work of Dr Janine Alan for curating the Royal Commission data and contributing to keyword generation.

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

Author information

Authors and affiliations.

Centre for Research in Aged Care, School of Nursing and Midwifery, Edith Cowan University, 270 Joondalup Drive, 6027, Joondalup, WA, Australia

Patricia Cain, Pelden Chejor & Davina Porock

You can also search for this author in PubMed   Google Scholar

Contributions

PC (first author) contributed to the design, curated the data set, contributed to the data analysis, and provided content for the manuscript. She is the principal author of the manuscript and responsible for the overall content as guarantor. PC (second author) assisted with the data analysis and provided content for the manuscript. DP conceptualised the research, contributed to the design, supervised data analysis, and provided content for the manuscript. All authors reviewed the manuscriptThe corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted.

Corresponding author

Correspondence to Patricia Cain .

Ethics declarations

Ethics approval.

This study was approved by Edith Cowan University Human Research Ethics Committee (HREC 2019-01007-POROCK).

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Centre for Research in Aged Care @crac_ecu.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Cain, P., Chejor, P. & Porock, D. Chemical restraint as behavioural euthanasia: case studies from the Royal Commission into Aged Care Quality and Safety. BMC Geriatr 23 , 444 (2023). https://doi.org/10.1186/s12877-023-04116-5

Download citation

Received : 08 April 2023

Accepted : 17 June 2023

Published : 19 July 2023

DOI : https://doi.org/10.1186/s12877-023-04116-5

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Chemical restraint
• Royal Commission
• Psychotopic medication
• Family advocacy

BMC Geriatrics

ISSN: 1471-2318

• Submission enquiries: [email protected]
• General enquiries: [email protected]

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

• Advanced Search
• Journal List
• Indian J Med Res
• v.136(6); 2012 Dec

Euthanasia: Right to life vs right to die

Suresh bada math.

Department of Psychiatry National Institute of Mental Health & Neuro Sciences (Deemed University) Bangalore 560 029, India

Santosh K. Chaturvedi

The word euthanasia, originated in Greece means a good death 1 . Euthanasia encompasses various dimensions, from active (introducing something to cause death) to passive (withholding treatment or supportive measures); voluntary (consent) to involuntary (consent from guardian) and physician assisted (where physician's prescribe the medicine and patient or the third party administers the medication to cause death) 2 , 3 . Request for premature ending of life has contributed to the debate about the role of such practices in contemporary health care. This debate cuts across complex and dynamic aspects such as, legal, ethical, human rights, health, religious, economic, spiritual, social and cultural aspects of the civilised society. Here we argue this complex issue from both the supporters and opponents’ perspectives, and also attempts to present the plight of the sufferers and their caregivers. The objective is to discuss the subject of euthanasia from the medical and human rights perspective given the background of the recent Supreme Court judgement 3 in this context.

In India abetment of suicide and attempt to suicide are both criminal offences. In 1994, constitutional validity of Indian Penal Code Section (IPC Sec) 309 was challenged in the Supreme Court 4 . The Supreme Court declared that IPC Sec 309 is unconstitutional, under Article 21 (Right to Life) of the constitution in a landmark judgement 4 . In 1996, an interesting case of abetment of commission of suicide (IPC Sec 306) came to Supreme Court 5 . The accused were convicted in the trial court and later the conviction was upheld by the High Court. They appealed to the Supreme Court and contended that ‘right to die’ be included in Article 21 of the Constitution and any person abetting the commission of suicide by anyone is merely assisting in the enforcement of the fundamental right under Article 21; hence their punishment is violation of Article 21. This made the Supreme Court to rethink and to reconsider the decision of right to die. Immediately the matter was referred to a Constitution Bench of the Indian Supreme Court. The Court held that the right to life under Article 21 of the Constitution does not include the right to die 5 .

Regarding suicide, the Supreme Court reconsidered its decision on suicide. Abetment of suicide (IPC Sec 306) and attempt to suicide (IPC Sec 309) are two distinct offences, hence Section 306 can survive independent of Section 309. It has also clearly stated that a person attempts suicide in a depression, and hence he needs help, rather than punishment. Therefore, the Supreme Court has recommended to Parliament to consider the feasibility of deleting Section 309 from the Indian Penal Code 3 .

Arguments against euthanasia

Eliminating the invalid : Euthanasia opposers argue that if we embrace ‘the right to death with dignity’, people with incurable and debilitating illnesses will be disposed from our civilised society. The practice of palliative care counters this view, as palliative care would provide relief from distressing symptoms and pain, and support to the patient as well as the care giver. Palliative care is an active, compassionate and creative care for the dying 6 .

Constitution of India : ‘Right to life’ is a natural right embodied in Article 21 but suicide is an unnatural termination or extinction of life and, therefore, incompatible and inconsistent with the concept of ‘right to life’. It is the duty of the State to protect life and the physician's duty to provide care and not to harm patients. If euthanasia is legalised, then there is a grave apprehension that the State may refuse to invest in health (working towards Right to life). Legalised euthanasia has led to a severe decline in the quality of care for terminally-ill patients in Holland 7 . Hence, in a welfare state there should not be any role of euthanasia in any form.

Symptom of mental illness : Attempts to suicide or completed suicide are commonly seen in patients suffering from depression 8 , schizophrenia 9 and substance users 10 . It is also documented in patients suffering from obsessive compulsive disorder 11 . Hence, it is essential to assess the mental status of the individual seeking for euthanasia. In classical teaching, attempt to suicide is a psychiatric emergency and it is considered as a desperate call for help or assistance. Several guidelines have been formulated for management of suicidal patients in psychiatry 12 . Hence, attempted suicide is considered as a sign of mental illness 13 .

Malafide intention : In the era of declining morality and justice, there is a possibility of misusing euthanasia by family members or relatives for inheriting the property of the patient. The Supreme Court has also raised this issue in the recent judgement 3 . ‘Mercy killing’ should not lead to ‘killing mercy’ in the hands of the noble medical professionals. Hence, to keep control over the medical professionals, the Indian Medical Council (Professional Conduct, Etiquette and Ethics) Regulations, 2002 discusses euthanasia briefly in Chapter 6, Section 6.7 and it is in accordance with the provisions of the Transplantation of Human Organ Act, 1994 14 . There is an urgent need to protect patients and also medical practitioners caring the terminally ill patients from unnecessary lawsuit. Law commission had submitted a report (no-196) to the government on this issue 15 .

Emphasis on care : Earlier majority of them died before they reached the hospital but now it is converse. Now sciences had advanced to the extent, life can be prolonged but not to that extent of bringing back the dead one. This phenomenon has raised a complex situation. Earlier diseases outcome was discussed in terms of ‘CURE’ but in the contemporary world of diseases such as cancer, Aids, diabetes, hypertension and mental illness are debated in terms best ‘CARE’, since cure is distant. The principle is to add life to years rather than years to life with a good quality palliative care. The intention is to provide care when cure is not possible by low cost methods. The expectation of society is, ‘cure’ from the health professionals, but the role of medical professionals is to provide ‘care’. Hence, euthanasia for no cure illness does not have a logical argument. Whenever, there is no cure, the society and medical professionals become frustrated and the fellow citizen take extreme measures such as suicide, euthanasia or substance use. In such situations, palliative and rehabilitative care comes to the rescue of the patient and the family. At times, doctors do suggest to the family members to have the patient discharged from the hospital wait for death to come, if the family or patient so desires. Various reasons are quoted for such decisions, such as poverty, non-availability of bed, futile intervention, resources can be utilised for other patients where cure is possible and unfortunately majority of our patient's family do accordingly. Many of the terminally ill patients prefer to die at home, with or without any proper terminal health care. The societal perception needs to be altered and also the medical professionals need to focus on care rather in addition to just cure. The motive for many euthanasia requests is unawareness of alternatives. Patients hear from their doctors that ‘nothing can be done anymore’. However, when patients hear that a lot can be done through palliative care, that the symptoms can be controlled, now and in the future, many do not want euthanasia anymore 16 .

Commercialisation of health care : Passive euthanasia occurs in majority of the hospitals across the county, where poor patients and their family members refuse or withdraw treatment because of the huge cost involved in keeping them alive. If euthanasia is legalised, then commercial health sector will serve death sentence to many disabled and elderly citizens of India for meagre amount of money. This has been highlighted in the Supreme Court Judgement 3 , 17 .

Research has revealed that many terminally ill patients requesting euthanasia, have major depression, and that the desire for death in terminal patients is correlated with the depression 18 . In Indian setting also, strong desire for death was reported by 3 of the 191 advanced cancer patients, and these had severe depression 19 . They need palliative and rehabilitative care. They want to be looked after by enthusiastic, compassionate and humanistic team of health professionals and the complete expenses need to be borne by the State so that ‘Right to life’ becomes a reality and succeeds before ‘Right to death with dignity’. Palliative care actually provides death with dignity and a death considered good by the patient and the care givers.

Counterargument of euthanasia supporters

Caregivers burden : ‘Right-to-die’ supporters argue that people who have an incurable, degenerative, disabling or debilitating condition should be allowed to die in dignity. This argument is further defended for those, who have chronic debilitating illness even though it is not terminal such as severe mental illness. Majority of such petitions are filed by the sufferers or family members or their caretakers. The caregiver's burden is huge and cuts across various domains such as financial, emotional, time, physical, mental and social. Hence, it is uncommon to hear requests from the family members of the person with psychiatric illness to give some poison either to patient or else to them. Coupled with the States inefficiency, apathy and no investment on health is mockery of the ‘Right to life’.

Refusing care : Right to refuse medical treatment is well recognised in law, including medical treatment that sustains or prolongs life. For example, a patient suffering from blood cancer can refuse treatment or deny feeds through nasogastric tube. Recognition of right to refuse treatment gives a way for passive euthanasia. Many do argue that allowing medical termination of pregnancy before 16 wk is also a form of active involuntary euthanasia. This issue of mercy killing of deformed babies has already been in discussion in Holland 20 .

Right to die : Many patients in a persistent vegetative state or else in chronic illness, do not want to be a burden on their family members. Euthanasia can be considered as a way to upheld the ‘Right to life’ by honouring ‘Right to die’ with dignity.

Encouraging the organ transplantation : Euthanasia in terminally ill patients provides an opportunity to advocate for organ donation. This in turn will help many patients with organ failure waiting for transplantation. Not only euthanasia gives ‘Right to die’ for the terminally ill, but also ‘Right to life’ for the organ needy patients.

Constitution of India reads ‘right to life’ is in positive direction of protecting life. Hence, there is an urgent need to fulfil this obligation of ‘Right to life’ by providing ‘food, safe drinking water and health care’. On the contrary, the state does not own the responsibility of promoting, protecting and fulfilling the socio-economic rights such as right to food, right to water, right to education and right to health care, which are basic essential ingredients of right to life. Till date, most of the States has not done anything to support the terminally ill people by providing for hospice care.

If the State takes the responsibility of providing reasonable degree of health care, then majority of the euthanasia supporters will definitely reconsider their argument. We do endorse the Supreme Court Judgement that our contemporary society and public health system is not matured enough to handle this sensitive issue, hence it needs to be withheld. However, this issue needs to be re-examined again after few years depending upon the evolution of the society with regard to providing health care to the disabled and public health sector with regard to providing health care to poor people.

The Supreme Court judgement to withhold decision on this sensitive issue is a first step towards a new era of health care in terminally ill patients. The Judgment laid down is to preserve harmony within a society, when faced with a complex medical, social and legal dilemma. There is a need to enact a legislation to protect terminally ill patients and also medical practitioners caring for them as per the recommendation of Law Commission Report-196 15 . There is also an urgent need to invest in our health care system, so that poor people suffering from ill health can access free health care. Investment in health care is not a charity; ‘Right to Health’ is bestowed under ‘Right to Life’ of our constitution.