Reflecting on 'Hannah's Choice': Using the Ethics of Care to Justify Child Participation in End of Life Decision-Making
Decision Making; Terminally Ill; Child; Children; Decision-Making; End-of-Life; Ethics of Care; Female; Gillick Competence; Guidelines as Topic; Humans; Informed Consent By Minors/ethics/legislation & jurisprudence; Mental Competency/legislation & jurisprudence; Palliative Care/ethics; Parents; Personal Autonomy; Terminal Care/ethics; Treatment Refusal; Treatment Refusal/ethics/legislation & jurisprudence; United Kingdom
It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory rights (UNCRC-Article 12), and a greater understanding of family-centred decision-making. However, the courts still largely maintain their traditional reluctance to find children Gillick competent to refuse medical treatment. In this article, I revisit Hannah's case through the narrative account provided by Hannah and her mother, to ascertain what lessons can be learnt. I use an Ethics of Care framework specially developed for children in mid-childhood, such as Hannah, to argue for more a creative and holistic approach to child decision-making in healthcare. I conclude that using traditional paradigms is untenable in the context of palliative care and at the end of life, and that the law should be able to accommodate greater, and even determinative, participation of children who are facing their own deaths.
Moreton KL
Medical Law Review
2020
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<a href="http://doi.org/10.1093/medlaw/fwz011" target="_blank" rel="noreferrer noopener">10.1093/medlaw/fwz011</a>
Pediatric euthanasia in Belgium: disturbing developments
Child; Humans; Palliative Care; Terminal Care; Personal Autonomy; Chronic disease; Euthanasia; Belgium; Stress; Palliative Care; Psychological; Active
2014-05
Siegel AM; Sisti DA; Caplan AL
Jama
2014
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Journal Article
<a href="http://doi.org/10.1001/jama.2014.4257" target="_blank" rel="noreferrer">10.1001/jama.2014.4257</a>
Self-requested euthanasia for children in Belgium
Humans; Young Adult; Palliative Care; Mental Competency; Personal Autonomy; Euthanasia; Choice Behavior; Minors; Europe; Belgium; Patient Rights; quality of life; adolescent; decision making; Active; Voluntary; Wedge Argument
In the complex patient—doctor relationship, the principle of personal autonomy has gradually acquired more weight against medical paternalism, both in clinical practice and in bioethical thinking. 1 In many countries, this change has been incorporated into national legislation in the past 20 years. The Belgian Act on Patients' Rights was promulgated in 2002. In the same year, the Belgian Act on Palliative Care was adopted, which grants access to palliative care that focuses on improving quality of ...
2014-02
Dan B; Fonteyne C; de Cléty Stéphan Clément
Lancet
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/S0140-6736(14)60110-0" target="_blank" rel="noreferrer">10.1016/S0140-6736(14)60110-0</a>
Relational autonomy: moving beyond the limits of isolated individualism
adolescent; Child; Female; Humans; Male; Adolescent Psychology; Personal Autonomy; Physician-Patient Relations; Pediatrics; Parents; Withholding Treatment; Professional-Family Relations; Communication; Child Psychology; Palliative Care; Psychological; Models
Although clinicians may value respecting a patient's or surrogate's autonomy in decision-making, it is not always clear how to proceed in clinical practice. The confusion results, in part, from which conception of autonomy is used to guide ethical practice. Reliance on an individualistic conception such as the "in-control agent" model prioritizes self-sufficiency in decision-making and highlights a decision-maker's capacity to have reason transcend one's emotional experience. An alternative model of autonomy, relational autonomy, highlights the social context within which all individuals exist and acknowledges the emotional and embodied aspects of decision-makers. These 2 conceptions of autonomy lead to different interpretations of several aspects of ethical decision-making. The in-control agent model believes patients or surrogates should avoid both the influence of others and emotional persuasion in decision-making. As a result, providers have a limited role to play and are expected to provide medical expertise but not interfere with the individual's decision-making process. In contrast, a relational autonomy approach acknowledges the central role of others in decision-making, including clinicians, who have a responsibility to engage patients' and surrogates' emotional experiences and offer clear guidance when patients are confronting serious illness. In the pediatric setting, in which decision-making is complicated by having a surrogate decision-maker in addition to a patient, these conceptions of autonomy also may influence expectations about the role that adolescents can play in decision-making.
2014-02
Walter JK; Ross LF
Pediatrics
2014
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Journal Article
<a href="http://doi.org/10.1542/peds.2013-3608D" target="_blank" rel="noreferrer">10.1542/peds.2013-3608D</a>
Medical ethics in pediatric critical care
Child; Humans; United States; Terminal Care; decision making; Parental Consent; Personal Autonomy; Pediatrics; Withholding Treatment; Professional-Family Relations; Dissent and Disputes; Truth Disclosure; Critical Care; Tissue and Organ Procurement; Ethics; Medical; Patient Rights; Clinical; Ethics Committees; Resource Allocation
Ethically charged situations are common in pediatric critical care. Most situations can be managed with minimal controversy within the medical team or between the team and patients/families. Familiarity with institutional resources, such as hospital ethics committees, and national guidelines, such as publications from the American Academy of Pediatrics, American Medical Association, or Society of Critical Care Medicine, are an essential part of the toolkit of any intensivist. Open discussion with colleagues and within the multidisciplinary team can also ensure that when difficult situations arise, they are addressed in a proactive, evidence-based, and collegial manner.
2013-04
Orioles A; Morrison WE
Critical Care Clinics
2013
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Journal Article
<a href="http://doi.org/10.1016/j.ccc.2012.12.002" target="_blank" rel="noreferrer">10.1016/j.ccc.2012.12.002</a>
Mind the child: using interactive technology to improve child involvement in decision making about life-limiting illness.
Humans; Personal Autonomy; Interviews as Topic; Attitude to Death; Communication; Qualitative Research; DNAR; Computer-Assisted; decision making; Terminal Care; Terminal Care/es [Ethics]; Advance Directives/es [Ethics]; Child; Patient Participation/mt [Methods]; Advance Care Planning/es [Ethics]; Patient Participation/td [Trends]; Terminal Care/td [Trends]
2010
Barfield RC; Brandon D; Thompson J; Harris N; Schmidt M; Docherty S
The American Journal Of Bioethics
2010
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Journal Article
<a href="http://doi.org/10.1080/15265161003632930" target="_blank" rel="noreferrer">10.1080/15265161003632930</a>
The use of pediatric advance directives: a tool for palliative care physicians.
Child; Humans; United States; Personal Autonomy; decision making; DNAR; Palliative Care/es [Ethics]; Palliative Care/og [Organization & Administration]; Advance Care Planning/es [Ethics]; Right to Die/lj [Legislation & Jurisprudence]; Advance Care Planning/og [Organization & Administration]; Palliative Care/px [Psychology]; Child Advocacy; Pediatrics/og [Organization & Administration]; Child Advocacy/es [Ethics]; Child Advocacy/lj [Legislation & Jurisprudence]; Child Advocacy/px [Psychology]; Minors/lj [Legislation & Jurisprudence]; Minors/px [Psychology]; Parental Consent/es [Ethics]; Parental Consent/lj [Legislation & Jurisprudence]; Parental Consent/px [Psychology]; Patient Participation/lj [Legislation & Jurisprudence]; Patient Participation/px [Psychology]; Pediatrics/es [Ethics]; Right to Die/es [Ethics]
Although laws such as the Patient Self-Determination Act encourage individuals to address their end-of-life treatment preferences using advance directives, the wishes of children have traditionally been ignored or, perhaps even worse, overruled. Given that there is a substantial body of research indicating that children are capable of making mature decisions when faced with terminal illness, the author proposes granting minors, especially older minors, the right to participate in making end-of-life decisions. Children who complete advance directives benefit in multiple ways. Adopting this approach could benefit patients by demonstrating respect for patient autonomy and informing parents and providers that the minor may be ready to stop aggressive treatment.
2008
Zinner SE
The American Journal Of Hospice & Palliative Care
2008
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Journal Article
<a href="http://doi.org/10.1177/1049909108322294" target="_blank" rel="noreferrer">10.1177/1049909108322294</a>
Ethical problems in pediatric critical care: consent
Child; Humans; United States; Intensive Care Units; Parental Consent; Personal Autonomy; Physician's Role; Ethics; decision making; Clinical; ICU Decision Making; Informed Consent/ethics/legislation & jurisprudence; Minors/legislation & jurisprudence; Pediatric/ethics/legislation & jurisprudence
Informed consent constitutes one of the important considerations included in the myriad ethical dilemmas in the pediatric intensive care unit. Traditionally, the law has viewed children as incompetent to make medical decisions, and society has authorized parents or guardians to act on behalf of children. Empirical evidence has revealed that children may be more capable of participating in their medical decisions than previously thought. Some scholars now think that parents have the right to give informed permission and that professionals should seek the child's assent in many circumstances. Physicians in the intensive care unit should seriously consider consulting adolescent patients about the direction of their care and may wish to seek the input of younger patients in appropriate circumstances.
2003
Zawistowski CA; Frader JE
Critical Care Medicine
2003
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Journal Article
<a href="http://doi.org/10.1097/01.CCM.0000065274.46402.DB" target="_blank" rel="noreferrer">10.1097/01.CCM.0000065274.46402.DB</a>
Coordinating the norms and values of medical research, medical practice and patient worlds-the ethics of evidence based medicine in orphaned fields of medicine
Delivery of Health Care; Humans; Personal Autonomy; Attitude to Health; Clinical Competence; Ethics; Medical; Analytical Approach; Models; Theoretical; Health Care and Public Health; Social Responsibility; Allied Health Occupations/ethics; Cognitive Therapy/ethics; Evidence-Based Medicine/ethics; Integrated/ethics; Interprofessional Relations/ethics; Logic; Patient Care Team/ethics; Physical Therapy Modalities/ethics; Social Justice/ethics
Evidence based medicine is rightly at the core of current medicine. If patients and society put trust in medical professional competency, and on the basis of that competency delegate all kinds of responsibilities to the medical profession, medical professionals had better make sure their competency is state of the art medical science. What goes for the ethics of clinical trials goes for the ethics of medicine as a whole: anything that is scientifically doubtful is, other things being equal, ethically unacceptable. This particularly applies to so called orphaned fields of medicine, those areas where medical research is weak and diverse, where financial incentives are lacking, and where the evidence regarding the aetiology and treatment of disease is much less clear than in laboratory and hospital based medicine. Examples of such orphaned fields are physiotherapy, psychotherapy, medical psychology, and occupational health, which investigate complex syndromes such as RSI, whiplash, chronic low back pain, and chronic fatigue syndrome. It appears that the primary ethical problem in this context is the lack of attention to the orphaned fields. Although we agree that this issue deserves more attention as a matter of potential injustice, we want to argue that, in order to do justice to the interplay of heterogeneous factors that is so typical of the orphaned fields, other ethical models than justice are required. We propose the coordination model as a window through which to view the important ethical issues which relate to the communication and interaction of scientists, health care workers, and patients.
2004
Vos R; Willems D; Houtepen R
Journal Of Medical Ethics
2004
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Journal Article
<a href="http://doi.org/10.1136/jme.2003.007153" target="_blank" rel="noreferrer">10.1136/jme.2003.007153</a>
Care of the dying adolescent: special considerations
Humans; United States; Adolescent Psychology; Personal Autonomy; Physician-Patient Relations; Death and Euthanasia; decision making; Terminally Ill/legislation & jurisprudence/psychology; Mental Competency/legislation & jurisprudence; Terminal Care/ethics/legislation & jurisprudence/psychology; Adolescent/legislation & jurisprudence; Advance Directives/legislation & jurisprudence; Palliative Care/ethics/legislation & jurisprudence; Parental Consent/ethics/legislation & jurisprudence
More than 3000 adolescents in the United States die annually from the effects of chronic illness. Providing appropriate end-of-life care for these patients is particularly challenging because of several developmental, ethical, and legal considerations relevant to this age group. Developmental issues relate to the ways in which life-threatening illness alters the normal physical and psychological changes associated with adolescence, including attainment of independence, social skills, peer acceptance, and a healthy self-image. Ethical and legal issues arise from the fact that many terminally ill adolescents <18 years of age lack ordinary legal authority to make binding medical decisions (including discontinuation of their treatment), yet they meet functional criteria for having the competence to do so. In such situations, a broad medical, ethical, and legal consensus supports giving decisional authority to the minor patient. Even when full decisional authority is not appropriate, strong moral arguments exist for taking serious account of the young adolescent's treatment preferences. In supporting the dying adolescent, an atmosphere promoting excellent communication and sound decision-making should be fostered as early as possible during preterminal care and maintained thereafter. Once palliative-care strategies become the clinical focus, psychosocial support sensitive to the adolescent's developmental stage must be provided. Using these principles, clinicians can play a crucial role in helping the adolescent, in the face of death, to experience richness of life and the dignity of self-determination.
2004
Freyer DR
Pediatrics
2004
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Journal Article
<a href="http://doi.org/10.1542/peds.113.2.381" target="_blank" rel="noreferrer">10.1542/peds.113.2.381</a>
Effects of offering advance directives on medical treatments and costs
Humans; Personal Autonomy; Withholding Treatment; Prospective Studies; California; Hospitals; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; DNAR Outcomes; Resource Allocation; Health Care and Public Health; Veterans; University; Advance Directives/ec [Economics]; Advance Directives/psychology; California Durable Power of Attorney for Health Care; Control Groups; Cost Control/methods; Life Support Care/utilization; Life Support Care/economics; Patient Satisfaction/statistics & numerical data; Risk Assessment
Objective: To examine the effects of advance directives on medical treatments and on patient satisfaction and well-being and to determine whether the enhancement of patient autonomy through advance directives provides a more ethically feasible approach to cost control than does the imposition of limits through rationing.; Design: Randomized, controlled trial.; Setting: University and Veterans Affairs medical center.; Patients: Two hundred and four patients with life-threatening illnesses, 100 of whom died after enrollment in the study.; Intervention: Patients randomly assigned to the experimental group were offered the California Durable Power of Attorney (a typical proxy-instruction directive), and patients assigned to the control group were not offered the advance directive. Hospital admissions were monitored to assure that a summary of the document was present in the active medical record at each hospitalization.; Measurements: Cognitive function, patient satisfaction, psychological well-being, health locus of control, sense of coherence, health-related quality of life, receipt of medical treatments, and medical treatment charges.; Results: No significant differences were found between advance-directive and control groups regarding psychosocial variables, health outcome variables, and medical treatments or charges. Patients offered an advance directive had an average hospital stay of 40.8 days (95% CI, 32.2 to 49.4 days), compared with an average of 33.1 days (95% CI, 26.0 to 40.2 days) for controls. Patients offered an advance directive were charged an average of $19,502 (95% CI, $13,030 to $25,974) for medical treatments in the last month of life compared with $19,700 (95% CI, $13,704 to $25,696) for controls.; Conclusions: Despite claims that public demand for longer life accounts for rising medical costs, most surveys suggest that patients are calling for less, not more, of the expensive, high-technology treatment often used in terminal phases of illness. Executing the California Durable Power of Attorney for Health Care and having a summary copy placed in the patient's medical record had no significant positive or negative effect on a patient's well-being, health status, medical treatments, or medical treatment charges.;
1992-10
Schneiderman LJ; Kronick R; Kaplan RM; Anderson JP; Langer RD
Annals Of Internal Medicine
1992
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Journal Article
Evidence-based oral and maxillofacial surgery: some pitfalls and limitations
Humans; Personal Autonomy; Practice Guidelines as Topic; Outcome Assessment (Health Care); Research Design; Total Quality Management; Review Literature as Topic; Research; Ethics; decision making; Oral; Surgery; Health Care; Quality Assurance; Databases as Topic; Dental; Diffusion of Innovation; Evidence-Based Dentistry; Meta-Analysis as Topic; Publication Bias; Randomized Controlled Trials as Topic/classification/standards
Pitak-Arnnop P; Hemprich A; Pausch NC
Journal Of Oral And Maxillofacial Surgery
2011
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Journal Article
<a href="http://doi.org/10.1016/j.joms.2010.07.082" target="_blank" rel="noreferrer">10.1016/j.joms.2010.07.082</a>