Ethical considerations on the use of medical technologies for children and youth with complex and chronic conditions

The Canadian Paediatric Society gives permission to print single copies of this document from our website. For permission to reprint or reproduce multiple copies, please see our copyright policy.

Background

The population of children and youth with complex and chronic health conditions is growing in Canada^[1][2]. Many live with needs that are not easily met by a health care system that focuses on acute care delivery while sometimes neglecting mental health, psychosocial supports, cultural differences, and community resources^[3][4]. While some children and youth are dependent on technologies like tracheostomy with mechanical ventilation, ventricular assist devices, long-term parenteral nutrition, or dialysis, many rely on less complex technologies such as feeding tubes, suctioning equipment, and mobility aides^[5]-[11]. In Canada, even with a publicly funded health care system, families bear significant financial, psychosocial, and other costs^[12]-[18]. Indigenous, newcomer, racialized, low-income, rural, and other equity-deserving families face additional barriers to accessing technologies^[19]-[21].

The medical, ethics, and technology literature includes studies engaging the lived experiences of patients and caregivers of children with complex and chronic conditions. This literature points to the importance of looking beyond an instrumental perspective on medical technologies, whereby the technologies are viewed simply as a “means to an end”. This position statement draws on the literature to offer a series of considerations on employing medical technologies.

Methods

A literature review from 1990 to 2024 was conducted using broad (medical technologies, ethics, decision-making, and goals of care) and narrow (dialysis, ventricular assist devices, extracorporeal life support, and tracheostomy) search terms, with focus on technologies encircled by the health ethics literature. Filters were applied, limiting the search to persons <18 years. Databases included CINAHL (EBSCO), MEDLINE (Ovid), EMBASE (Ovid), PsycINFO (Ovid), and Scopus.

Good practice statements were formulated without applying GRADE (Grading of Recommendations Assessment, Development and Evaluation), using available evidence and ethics literature^[22][23]. The term “consideration” was chosen over “recommendation” because providing complex care involves judgement, balancing options, and reflecting on how best to meet the needs of individual patients and families in real-life situations.

Considerations

1. The use of medical technologies should have an evidence base or potential benefit grounded in an understanding of the child’s overall medical condition.

Health care professionals (HCPs) are not morally or legally obliged to provide medical technologies without sound justification^[24][25], especially when interventions come with costs and complications^[26][27].

The use of medical technologies can be challenging for children and youth with complex conditions because they generally have multiple health issues^[28]. When the evidence is equivocal, technologies may need to be tried to see whether they provide a benefit^[29]-[32]. That said, a piecemeal approach to care should be avoided in favour of focusing on the issues most significantly affecting a child.

2. HCPs have ethical obligations to discuss medical technologies as potential treatment options with patients and families.

Respect for autonomy is a cardinal principle of medical ethics^[24] that includes both positive obligations (e.g., to support informed decision-making) and negative obligations (e.g., not to constrain decision-making through lack of disclosure of information). The developing autonomy of children and youth should be supported and their preferences valued, recognizing that it is often their parents or other surrogates who bear relative authority as decision-makers^[33]-[36].

While the use of medical technologies often necessitates the input of multiple HCPs, shared decision-making ultimately occurs at the bedside^[37]. In these conversations, the focus is not simply on explaining how medical technologies work, but rather how the technologies may affect a child in the short and longer term. Children and families are recognized experts concerning their values, beliefs, culture, and personal experiences^[12][13][16]. Discussing medical technologies as potential treatment options is not the same as recommending them, recognizing that it may feel hard for families to say “no”. It may be helpful to focus on the philosophy of care, and how technologies may achieve or compromise care goals^[38]. Conversations may benefit from a relational approach, i.e., building therapeutic relationships with families that centre respect, open communication, and shared decision-making^[39]-[41]. The importance of cultural humility and safety for such conversations cannot be overstated^[42][43]. HCPs need to be aware of the potential burden of decisions, the distress that may come from decision-making, and the possibility of families living with decisional regret^{[12][44]-[47]}. It should be made clear to families that care for their child will continue to occur regardless of their decisions.

3. Medical technologies should achieve some end that is “good”, as realized through conversations with patients and families.

It is generally recognized that medicine should aspire for “good” beyond simply extending life: relief of pain, valuable experiences, meaningful relationships, or some other good^[48]. “Good” is both value-laden and subjective, reflecting an individual’s values, beliefs, culture, and other aspects. Children and youth can have different perspectives from their parents^[33]. There is extensive literature exploring how specific technologies may affect children and their caregivers^{[12][13][16][49]-[51]}. For example, a ventricular assist device for heart failure affects an adolescent’s experience of bodily independence in a unique yet shared way to an insulin-pump for diabetes, by virtue of technical design and the condition addressed^[52]-[55].

A shared understanding of the intent of a proposed technology can help align care goals. For example, explaining the use of extracorporeal membrane oxygenation as a bridge to recovery, decision-making, organ replacement, or other end may clarify its use^[56]-[59]. Underlying goals may be highly personal, subjective, and nuanced perspectives: “to be a good parent”, “not to give up”, “to try everything we can”, and “to have more good time as a family”^[41][60][61]. Patients and families can benefit from discussions that reference their expressed values, beliefs, and care goals in relation to current treatment regimens or technology use to make sure they continue to align over time^[38][62][63].

Medical technologies can benefit children with life-shortening medical conditions^[64][66]. In such cases, the focus is on considering how technologies affect a child’s quality-of-life rather than simply whether they extend life. When it comes to end-of-life decisions, HCPs and families may feel that withdrawing medical interventions is different from withholding them, even if outcomes are the same^[67]-[70]. These perspectives may be technology-specific or based on belief, culture, religion, or faith. For example, withdrawing artificial fluids or hydration may be viewed quite differently from withdrawing ventilator support^[71]-[74]. It is generally accepted that decisions to stop any form of life support should focus beyond the technologies used to sustain life^[75][76]. Technologies can herald future decision-making. For example, inserting a pacemaker might eventually afford decision-making about turning it off if recovery is not forthcoming. By contrast, starting parenteral nutrition for a terminally ill child or gastro-jejunal tube feeds for an aspirating infant may only forestall end-of-life decision-making. Whether medical technologies are reasonable in a palliative context is a patient-focused decision taken in the context of shared decision-making^[77][78].

4. The benefits of medical technologies should offset the expected burdens imposed by them.

The principle of proportionality recognizes that benefits should outweigh burdens and harms^[78][79]. There may be subjectivity to each, as individuals vary in their experiences, culture, religion, etc. Situations in which technologies may be needed indefinitely are generally accompanied by more angst. Weighing the consequences of an intervention can be challenging, particularly when decision-makers focus primarily on the immediate situation rather than the longer term. Proportionality is an ongoing assessment^[80][81].

Health care decisions may benefit from a step-wise approach toward limiting the use of a specific technology. For example, during goals of care decision-making, it might be determined that intubation will not be provided in the event of acute deterioration. It should be acknowledged that this decision carries risk for harm^[82]: limiting resuscitation to mask ventilation can protract resuscitation with risk of a child surviving with secondary hypoxic injury^[83]. Special care must be taken when presenting a limited resuscitation scenario as a middle-ground between “doing everything” and “doing nothing” due to bias toward moderation over extremes (the so-called “Goldilocks effect”).

The limits of Canada’s health care system can intersect with proportionality considerations^[80][84], such that disparities in home support, community resources, and other social determinants of health may complicate or compound decision-making around benefits and risks^[50][85].

5. Decision-making needs to place medical technologies in the context of a child’s or youth’s life, recognizing that they are situated within a family and community.

A child or youth’s “best interests” might not always be clear in medical decision-making, but ethical and legal standards direct that they remain front and centre throughout deliberations concerning care^[86]-[88].

“Family-centred care” recognizes that a child’s best interests are realized in the context of their family^[89]-[91]. For example, when tracheostomy with home ventilation is proposed as a means of getting a child home but community resources are insufficient to meet the child and family’s needs, the appropriateness of the tracheostomy may be questioned. Sometimes HCPs raise considerations that relate less directly to a patient’s best interests than to the benefit of family or society as “non-patient”-centred justifications^[92][93]. For example, an Indigenous worldview may shape understanding of disability holistically, along with valuing wider family and kinship matters in medical decision-making^[20][94][95].

Consideration of the effects of a proposed medical technology on a patient’s family, as both givers and receivers of care, is essential. Families bear the psychological effects, social repercussions, financial costs, and other consequences of decisions that are made^[96]. Such considerations are especially important when there are multiple morally acceptable care options in the “grey zone” or “zone of parental discretion”^[97]-[101]. Decisions should fall within a societally acceptable range of options, primarily guided by the child’s interests rather than a family’s needs^[102]. These are morally complex situations with far-reaching consequences that may be challenging for decision-makers to fully understand^[103]. In Canada, Indigenous, newcomer, racialized, low-income, rural-living, and other identities are associated with inequities of access to quality care and medical technologies^[19]-[21].

A medical decision can reflect disparate values, unconventional beliefs, and biases while remaining reasonable and worthy of respect^[104]-[109]. Decision-making that disadvantages a child or youth through individual or institutional biases may benefit from involving a cultural liaison worker, social worker, or clinical ethicist. Biases can exist regarding particular medical technologies and patient populations. For example, costs associated with insulin pumps or cancer treatment receive broad societal support, while those related to home ventilation or mobility devices seem to be differentially acknowledged^[110].

From considerations to actions

The above considerations can be deployed as a framework to support clinicians engaging in reflective questioning around medical technologies (Table 1).

Table 1. Reflective questions regarding medical technology use

Building team consensus

All five considerations, when explored together, can build health care team consensus. Including all HCPs in a child’s “circle of care” is generally optimal. Various approaches have been developed to support team consensus and recommendations^{[39][57][111]-[114]}. Common features include team meetings to align treatment recommendations, documenting goals of care conversations, and proactively engaging multi/interdisciplinary expertise, cultural support, communication strategies, and ethical/ legal services as needed.

An approach that is both holistic and individualized is needed whenever conflicting opinions are in play^[115]. It can be helpful to focus less on advocating for a single recommendation and more on recognizing that an intervention is reasonable if it reflects the considerations described above. “Reasonable” could mean accepting and supporting technology use even if an HCP might make a different choice for their own child. A “reality check” framework can be used to support understanding^[116]. Group decision-making may benefit from strategies such as “informed non-dissent”, whereby the family is fully informed and every HCP understands that loving families can make different decisions in similar settings^[117][118].

Challenging situations require collaboration with colleagues and other team members. Disciplines such as palliative care, social work, spiritual care, Indigenous patient navigators, cultural workers, and clinical ethicists are recognized supports for providers, patients, and families^[119]-[121].

Supporting the understanding of decision-makers

Table 2 describes strategies to strengthen informed consent based on the considerations described above. Shared decision-making ensures that medical technology use aligns with the values, beliefs, culture, and experiences of patients and families. There are specific practical aspects for certain technologies that warrant discussion^{[74][122]-[124]}. For example, discontinuing a pacemaker versus mechanical ventilation involves different end-of-life considerations as the dying process may be affected. There are online resources co-designed with patients and families that can aid communication and understanding (e.g., NeuroJourney by Courageous Parents Network^[125] and Family Reflections: Deciding about Home Ventilation from the Johns Hopkins School of Medicine^[126]).

Table 2. Strategies that help to strengthen informed consent

Supporting patients and families living with complex and chronic conditions

Just as medical technologies offer potential benefits, they also create possibilities for suffering, inequity, and other harms. It is not always clear when a given technology becomes “standard of care” (see, for example, the commentary on treating hypoplastic left heart in reference^[127]). These options can be ethically challenging for families, who can feel responsible to do “everything they can”. Interventions may come with demands to relocate, leave employment, and compromise other family responsibilities. “Doing everything” may be understood by HCPs as utilizing every medical intervention available, while for many families, doing everything means providing only those interventions that are expected to benefit their child^[128]. Longitudinal conversations, professional counselling, and peer support may be beneficial^{[121][129]-[133]}.

Anticipating and navigating conflicts

Sometimes, and despite best efforts, a conflict over the appropriateness of a medical technology will occur, causing moral distress and other forms of distress among staff and families. Having institutional policy and procedures in place to navigate such conflicts can help. While attending to the considerations described above may help mitigate conflict, some situations require involving ethical or legal services, recognizing that such pathways can vary widely across Canada. If there is a breakdown in understanding of a child’s best interests among the parties involved, it is important to remember that decision-making regarding medical technologies is also limited by societal moral values. For example, continuing to provide medical interventions following a neurological determination of death is generally considered inappropriate^[134]. To be clear, this does not mean discriminating against individuals with developmental differences, medical complexity, or technological dependency. Rather, it means recognizing that medicine has its limits even in our contemporary pluralistic moral context.

Systemic factors can increase patient and family burdens

System-level interests can motivate the use of medical technologies above and beyond the considerations described here. For example, there may be an impetus to perform a tracheostomy as a way of moving a patient out of critical care^[135][136]. This approach shifts financial costs, human resources, and other expectations from the hospital to the home, impacting both community providers and families themselves^[137]. The potential for institutional and system-level competing interests deserves reflection.

Equity considerations and resource allocation

In Canada, access to medical technologies and resources often depends on geography, system-level capacity, and other factors. One clear inequity is how child care is portioned out, with evidence continuing to show that mothers often bear much of the burden of their child’s medical care^[138]-[141].

Despite Calls to Action from the Truth and Reconciliation Commission of Canada, legal obligations such as Jordan’s Principle, and government programs such as the Inuit Child First Initiative, access to medical technologies and community supports is far from equitable across Canada^[142][143]. Indigenous communities are disproportionally affected by inequitable access to medical technologies and other resources needed for care^[20]. Key barriers include lack of culturally appropriate health care, distance, language and cultural factors, racism, the underemployment of First Nation, Inuit, and Métis peoples in health and community services, financial difficulties, and transport issues^[19]. Finally, it is worth noting that there is essentially no literature focusing on medical technology experiences among Indigenous children in Canada.

Conclusions

Together with the young patients and families they care for, paediatric HCPs must navigate the ethics of medical technology use. While some technologies may be used for a relatively short time and are associated with minimal burdens, others come with considerable, and sometimes lifelong costs. Therefore, ethical decision-making regarding the use of medical technologies should be woven into the care of children with chronic and complex conditions.

Acknowledgements

This statement was reviewed by the Acute Care, Community Paediatrics, Fetus and Newborn, First Nations, Inuit and Métis Health, Mental Health and Developmental Disabilities, and Nutrition and Gastroenterology Committees of the Canadian Paediatric Society. It was also reviewed by the CPS Complex Care, Hospital Paediatrics, Paediatric Emergency Medicine, Respiratory Health, and Social Paediatrics Section Executives.

CANADIAN PAEDIATRIC SOCIETY BIOETHICS COMMITTEE (2025-2026)

Members: Michael van Manen MD PhD (Chair), Kelly Cox MD (Board Representative), Adam Rapoport MD, Rebecca Greenberg PhD RN, Silvana Barone MD, Nathalie Gaucher MD

CANADIAN PAEDIATRIC SOCIETY COMPLEX CARE SECTION EXECUTIVE (2025-2026)

Members: Esther J. Lee MD (President), Sara Long-Gagné MD (Vice President), Nathalie Major MD (Past President), Audrey Lim MD MSc (Secretary-Treasurer), Julia Orkin MSc MD (Member at Large), Kathleen Huth MD (Member at Large), Elya Quesnel MD (Resident Liaison), James Andrew Dixon MSc BSc (Resident Liaison)
Principal authors: Michael van Manen MD PhD, Cheryl Mack MD, Maria Castro-Codesal MD PhD, Esther J. Lee MD

Funding
There is no funding to declare.

Potential Conflict of Interest
There are no disclosures to report.

References

1. Dewan T, Cohen E. Children with medical complexity in Canada. Paediatr Child Health 2013;18(10):518–22. doi: 10.1093/pch/18.10.518
2. Guttmann A, Cohen E, Moore C. Outcomes-based health human resource planning for maternal, child and youth health care in Canada: A new horizon for the 21st century. Paediatr Child Health 2009;14(5):310–4. doi: 10.1093/pch/14.5.310
3. Cohen E, Quartarone S, Orkin J, et al. Effectiveness of structured care coordination for children with medical complexity: The Complex Care for Kids Ontario (CCKO) randomized clinical trial. JAMA Pediatr 2023;177(5):461-71. doi: 10.1001/jamapediatrics.2023.0115
4. Davies D, Hartfield D, Wren T. Children who ‘grow up’ in hospital: Inpatient stays of six months or longer. Paediatr Child Health 2014;19(10):533-6. doi: 10.1093/pch/19.10.533
5. Allshouse C, Comeau M, Rodgers R, Wells N. Families of children with medical complexity: A view from the front lines. Pediatrics 2018;141(Suppl 3):S195-S201. doi: 10.1542/peds.2017-1284D
6. Berry JG, Hall M, Cohen E, O’Neill M, Feudtner C. Ways to identify children with medical complexity and the importance of why. J Pediatr 2015;167(2):229-37. doi: 10.1016/j.jpeds.2015.04.068
7. Brenner M, Alexander D, Quirke MB, et al. A systematic concept analysis of ‘technology dependent’: Challenging the terminology. Eur J Pediatr 2021;180(1):1-12. doi: 10.1007/s00431-020-03737-x
8. Cohen E, Kuo DZ, Agrawal R, et al. Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics 2011;127(3):529-38. doi: 10.1542/peds.2010-0910
9. Marcus KL, Henderson CM, Boss RD. Chronic critical illness in infants and children: A speculative synthesis on adapting ICU care to meet the needs of long-stay patients. Pediatr Crit Care Med 2016;17(8):743-52. doi: 10.1097/PCC.0000000000000792
10. Simon TD, Berry J, Feudtner C, et al. Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics 2010;126(4):647-55. doi: 10.1542/peds.2009-3266
11. Sobotka SA, Agrawal RK, Msall ME. Prolonged hospital discharge for children with technology dependency: A source of health care disparities. Pediatr Ann 2017;46(10):e365-e370. doi: 10.3928/19382359-20170919-01
12. Carnevale FA, Alexander E, Davis M, Rennick J, Troini R. Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home. Pediatrics 2006;117(1):e48-60. doi: 10.1542/peds.2005-0789
13. Castro-Codesal M, Ofosu DB, Mack C, Majaesic C, van Manen M. Parents’ experiences of their children's medical journeys with tracheostomies: A focus group study. Paediatr Child Health 2023;29(1):36-42. doi: 10.1093/pch/pxad042
14. Gutman T, Hanson CS, Bernays S, et al. Child and parental perspectives on communication and decision making in pediatric CKD: A focus group study. Am J Kidney Dis 2018;72(4):547-59. doi: 10.1053/j.ajkd.2018.05.005
15. Kerklaan J, Hannan E, Hanson C, et al. Perspectives on life participation by young adults with chronic kidney disease: An interview study. BMJ Open 2020;10(10):e037840. doi: 10.1136/bmjopen-2020-037840
16. Petruik C, Mack C, Conway J, Buchholz H, van Manen M. Talking with caregivers of children living in the community with ventricular assist devices. Pediatr Transplant 2017;21(7). doi: 10.1111/petr.13049
17. Seear M, Kapur A, Wensley D, Morrison K, Behroozi A. The quality of life of home-ventilated children and their primary caregivers plus the associated social and economic burdens: A prospective study. Arch Dis Child 2016;101(7):620-7. doi: 10.1136/archdischild-2015-309796
18. Teicher J, Moore C, Esser K, et al. The experience of parental caregiving for children with medical complexity. Clin Pediatr (Phila) 2023;62(6):633-44. doi: 10.1177/00099228221142102
19. Coombes J, Hunter K, Mackean T, Holland AJA, Sullivan E, Ivers R. Factors that impact access to ongoing health care for First Nation children with a chronic condition. BMC Health Serv Res 2018;18(1):448. doi: 10.1186/s12913-018-3263-y
20. Mackie AS, Gray M, Chappell A, et al. Barriers and supports for Indigenous youth and young adults with childhood-onset chronic health conditions transitioning from pediatric to adult healthcare: A qualitative study. Int J Equity Health 2024;23(1):268. doi: 10.1186/s12939-024-02343-9
21. So J, Sun S, Kim A, et al. Facilitating access to care for children with complex health needs through low-barrier place-based intake processes: Lessons from the RICHER social pediatric model. J Prim Care Community Health 2024;15:21501319241273284. doi: 10.1177/21501319241273284
22. Guyatt GH, Schünemann HJ, Djulbegovic B, Akl EA. Guideline panels should not GRADE good practice statements. J Clin Epidemiol 2015;68(5):597-600. doi: 10.1016/j.jclinepi.2014.12.011
23. Guyatt G, Vandvik PO, Iorio A, et al. Core GRADE 7: Principles for moving from evidence to recommendations and decisions. BMJ 2025;389:e083867. doi: 10.1136/bmj-2024-083867
24. Canadian Medical Association (CMA). CMA code of ethics and professionalism. December 8, 2018. Ottawa: The Association; 2018 (Accessed April 2, 2026).
25. Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: Its meaning and ethical implications. Ann Intern Med 1990;112(12):949-54. doi: 10.7326/0003-4819-112-12-949
26. Lantos JD, Kohrman AF. Ethical aspects of pediatric home care. Pediatrics 1992;89(5 Pt 1):920-4.
27. McKim DA, Road J, Avendano M, et al; Canadian Thoracic Society Home Mechanical Ventilation Committee. Home mechanical ventilation: A Canadian Thoracic Society clinical practice guideline. Can Respir J 2011;18(4):197-215. doi: 10.1155/2011/139769
28. Frader J, Thompson A. Ethical issues in the pediatric intensive care unit. Pediatr Clin North Am 1994;41(6):1405-21. doi: 10.1016/s0031-3955(16)38879-4
29. Lantos JD, Warady BA. The evolving ethics of infant dialysis. Pediatr Nephrol 2013;28(10):1943-7. doi: 10.1007/s00467-012-2351-1
30. Noritz G. How can we practice ethical medicine when the evidence is always changing? J Child Neurol 2015;30(11):1549-50. doi: 10.1177/0883073814563141
31. Peterec SM, Bizzarro MJ, Mercurio MR. Is extracorporeal membrane oxygenation for a neonate ever ethically obligatory? J Pediatr 2018;195:297-301. doi: 10.1016/j.jpeds.2017.11.018
32. Ribeiro-Mourão F, Bertaud S, Brierley J, McCulloch R, Köglmeier J, Hill SM. Use of home parenteral nutrition in severely neurologically impaired children. Arch Dis Child 2022;107(4):365-70. doi: 10.1136/archdischild-2021-321850
33. Coughlin KW. Medical decision-making in paediatrics: Infancy to adolescence. Paediatr Child Health 2018;23(2):138–46. doi: 10.1093/pch/pxx127
34. Grootens-Wiegers P, Hein IM, van den Broek JM, de Vries MC. Medical decision-making in children and adolescents: Developmental and neuroscientific aspects. BMC Pediatr 2017;17(1):120. doi: 10.1186/s12887-017-0869-x
35. Katz AL, Webb SA; American Academy of Pediatrics, Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics 2016;138(2):e20161485. doi: 10.1542/peds.2016-1485
36. McHaffie HE, Laing IA, Parker M, McMillan J. Deciding for imperilled newborns: Medical authority or parental autonomy? J Med Ethics 2001;27(2):104-9. doi: 10.1136/jme.27.2.104
37. Nelson KE, Mahant S. Shared decision-making about assistive technology for the child with severe neurologic impairment. Pediatr Clin North Am 2014;61(4):641-52. doi: 10.1016/j.pcl.2014.04.001
38. Rapoport A. Goals of care conversations and advance care planning for paediatric patients living with serious illness. Paediatr Child Health 2024;29(6):397–403. doi: 10.1093/pch/pxae041
39. Carnevale FA, Teachman G, Bogossian A. A relational ethics framework for advancing practice with children with complex health care needs and their parents. Compr Child Adolesc Nurs 2017;40(4):268-84. doi: 10.1080/24694193.2017.1373162
40. Pang J, Batson L, Detwiler K, et al. Where do families turn? Ethical dilemmas in the care of chronically critically ill children. Monash Bioeth Rev 2024. doi: 10.1007/s40592-024-00201-6
41. von Hauff P, Long K, Taylor B, van Manen MA. Antenatal consultation for parents whose child may require admission to neonatal intensive care: A focus group study for media design. BMC Pregnancy Childbirth 2016;16:103. doi: 10.1186/s12884-016-0898-8
42. Stubbe DE. Practicing cultural competence and cultural humility in the care of diverse patients. Focus (Am Psychiatr Publ) 2020;18(1):49-51. doi: 10.1176/appi.focus.20190041
43. Beaulieu E, Citron S, Giroux R, et al. Cultural safety in practice: Providing quality health care for First Nations, Inuit, and Métis children and youth. Paediatr Child Health 31(3):228–34. doi: 10.1093/pch/pxaf108
44. Foe G, Hellmann J, Greenberg RA. Parental moral distress and moral schism in the neonatal ICU. J Bioeth Inq 2018;15(3):319-25. doi: 10.1007/s11673-018-9858-5
45. Sullivan JE, Gillam LH, Monagle PT. After an end-of-life decision: Parents’ reflections on living with an end-of-life decision for their child. J Paediatr Child Health 2020;56(7):1060-65. doi: 10.1111/jpc.14816
46. Sisk BA, Kang TI, Goldstein R, DuBois JM, Mack JW. Decisional burden among parents of children with cancer. Cancer 2019;125(8):1365-72. doi: 10.1002/cncr.31939
47. Thivierge E, Luu TM, Bourque CJ, et al. Guilt and regret experienced by parents of children born extremely preterm. J Pediatr 2023;257:113268. doi: 10.1016/j.jpeds.2022.10.042
48. American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics 2000;106(2 Pt 1):351-7.
49. Ledin ER, Fasterius L, Björling G, Eriksson A, Mattson J. Technological lifelines: The everyday lived complexities of dependence and care of pediatric long-term tracheostomy. Disabil Rehabil 2024;47(14):3687-95. doi: 10.1080/09638288.2024.2428372
50. Rahman M, Jeffreys J, Massie J. A narrative review of the experience and decision-making for children on home mechanical ventilation. J Paediatr Child Health 2021;57(6):791-6. doi: 10.1111/jpc.15506
51. Shapiro MC, Detwiler K, Shepard J, et al. Ethical challenges in pediatric medical complexity: A survey of parents. J Pediatr 2025;279:114478. doi: 10.1016/j.jpeds.2025.114478
52. Faulds ER, Grey M, Tubbs-Cooley H, et al. Expect the unexpected: Adolescent and pre-teens’ experience of diabetes technology self-management. Pediatr Diabetes 2021;22(7):1051-62. doi: 10.1111/pedi.13249
53. Rea KE, McCormick AM, Lim HM, Cousino MK. Psychosocial outcomes in pediatric patients with ventricular assist devices and their families: A systematic review. Pediatr Transplant 2021;25(4):e14001. doi: 10.1111/petr.14001
54. Rashotte J, Tousignant K, Richardson C, et al. Living with sensor-augmented pump therapy in type 1 diabetes: Adolescents’ and parents’ search for harmony. Can J Diabetes 2014;38(4):256-62. doi: 10.1016/j.jcjd.2014.02.002
55. van Manen MA. The ventricular assist device in the life of the child: A phenomenological pediatric study. Qual Health Res 2017;27(6):792-804. doi: 10.1177/1049732317700853
56. Abrams DC, Prager K, Blinderman CD, Burkart KM, Brodie D. The appropriate use of increasingly sophisticated life-sustaining technology. Virtual Mentor 2013;15(12):1050-5. doi: 10.1001/virtualmentor.2013.15.12.stas2-1312
57. Aultman JM, Raimer PL, Grossoehme DH, Nofziger RA, Ba A, Friebert S. Supporting and contextualizing pediatric ECMO decision-making using a person-centered framework. J Clin Ethics 2023;34(3):245-57. doi: 10.1086/726811
58. Moynihan KM, Jansen M, Siegel BD, Taylor LS, Kirsch RE. Extracorporeal membrane oxygenation candidacy decisions: An argument for a process-based longitudinal approach. Pediatr Crit Care Med 2022;23(9):e434-e439. doi: 10.1097/PCC.0000000000002991
59. Pollack BE, Kirsch R, Chapman R, Hyslop R, MacLaren G, Barbaro RP. Extracorporeal membrane oxygenation then and now: Broadening indications and availability. Crit Care Clin 2023;39(2):255-75. doi: 10.1016/j.ccc.2022.09.003
60. October TW, Fisher KR, Feudtner C, Hinds PS. The parent perspective: “Being a good parent” when making critical decisions in the PICU. Pediatr Crit Care Med 2014;15(4):291-8. doi: 10.1097/PCC.0000000000000076
61. Weaver MS, Neumann ML, Lord B, Wiener L, Lee J, Hinds PS. Honoring the good parent intentions of courageous parents: A thematic summary from a US-based national survey. Children (Basel) 2020;7(12):265. doi: 10.3390/children7120265
62. Orkin J, Beaune L, Moore C, et al. Toward an understanding of advance care planning in children with medical complexity. Pediatrics 2020;145(3):e20192241. doi: 10.1542/peds.2019-2241
63. Robinson WM. Ethical Considerations in Chronic Invasive Mechanical Ventilation in Pediatrics. In: Sterni L, Carroll J, eds. Caring for the Ventilator Dependent Child. Respiratory Medicine. New York, NY: Humana Press; 2016.
64. Marshall V, Holt F, Crowe S. Tracheostomy as a comfort measure in children with life-limiting conditions. J Palliat Care 2017;32(3-4):89-91. doi: 10.1177/0825859717740064
65. Simonds AK. Respiratory support for the severely handicapped child with neuromuscular disease: Ethics and practicality. Semin Respir Crit Care Med 2007;28(3):342-54. doi: 10.1055/s-2007-981655
66. Tunuguntla H, Conway J, Villa C, Rapoport A, Jeewa A. Destination-therapy ventricular assist device in children: “The future is now”. Can J Cardiol 2020;36(2):216-22. doi: 10.1016/j.cjca.2019.10.033
67. Boss RD. Palliative care for NICU survivors with chronic critical illness. Semin Fetal Neonatal Med 2023;28(4):101446. doi: 10.1016/j.siny.2023.101446
68. Carlisle EM, Bagwell CE. Ethical challenges with decisions to withhold or withdraw resuscitation in pediatric surgery. Semin Pediatr Surg 2021;30(5):151096. doi: 10.1016/j.sempedsurg.2021.151096
69. Wellesley H, Jenkins IA. Withholding and withdrawing life-sustaining treatment in children. Paediatr Anaesth 2009;19(10):972-8. doi: 10.1111/j.1460-9592.2009.03027.x
70. Wilkinson DJ, Bertaud S. End of life care in the setting of extreme prematurity—Practical challenges and ethical controversies. Semin Fetal Neonatal Med 2023;28(4):101442. doi: 10.1016/j.siny.2023.101442
71. Anderson AK, Burke K, Bendle L, Koh M, McCulloch R, Breen M. Artificial nutrition and hydration for children and young people towards end of life: Consensus guidelines across four specialist paediatric palliative care centres. BMJ Support Palliat Care 2021;11(1):92-100. doi: 10.1136/bmjspcare-2019-001909
72. Geppert CMA, Andrews MR, Druyan ME. Ethical issues in artificial nutrition and hydration: A review. JPEN J Parenter Enteral Nutr 2010;34(1):79-88. doi: 10.1177/0148607109347209
73. Levi BH. Withdrawing nutrition and hydration from children: Legal, ethical, and professional issues. Clin Pediatr (Phila) 2003;42(2):139-45. doi: 10.1177/000992280304200207
74. Tsai E. Withholding and withdrawing artificial nutrition and hydration. Paediatr Child Health 2011;16(4):241-4. doi: 10.1093/pch/16.4.241
75. Carter BS, Leuthner SR. The ethics of withholding/withdrawing nutrition in the newborn. Semin Perinatol 2003;27(6):480-7. doi: 10.1053/j.semperi.2003.10.007
76. Porta N, Frader J. Withholding hydration and nutrition in newborns. Theor Med Bioeth 2007;28(5):443-51. doi: 10.1007/s11017-007-9049-6
77. Kevill K, Ker G, Meyer R. Shared decision making for children with chronic respiratory failure—It takes a village and a process. Pediatr Pulmonol 2021;56(7):2312-21. doi: 10.1002/ppul.25416
78. Shelton J, Jackson GP. Palliative care and pediatric surgery. Surg Clin North Am 2011;91(2):419-28,ix. doi: 10.1016/j.suc.2011.01.004
79. McCallum Z, Delany C, Gillam L. Crossing the line? Ethics of parenteral nutrition in paediatric neurodisability complicated by intestinal failure. Arch Dis Child 2023;108(1):11-14. doi: 10.1136/archdischild-2021-323500
80. Macauley R. To trach or not to trach, that is the question. Paediatr Respir Rev 2019;29:9-13. doi: 10.1016/j.prrv.2018.05.004
81. Shipman KJ, Mercer AH, Raisanen JC, et al. “What would give her the best life?”: Understanding why families decline pediatric home ventilation. J Palliat Med 2023;26(7):930-40. doi: 10.1089/jpm.2022.0426
82. Silverman A, Batten J, Berkman E, et al. Resuscitate but not intubate? Partial codes in pediatrics. Pediatrics 2023;152(2):e2022058931. doi: 10.1542/peds.2022-058931
83. Boyle RJ, McIntosh N. Ethical considerations in neonatal resuscitation: Clinical and research issues. Semin Neonatol 2001;6(3):261-9. doi: 10.1053/siny.2001.0054
84. Porta NFM. Palliative care approaches to neonates with chronic respiratory failure. Semin Perinatol 2017;41(2):124-7. doi: 10.1053/j.semperi.2016.11.009
85. Henningfeld J, Friedrich AB, Flanagan G, et al. Transitioning children using home invasive mechanical ventilation from hospital to home: Discharge criteria, disparities, and ethical considerations. Pediatr Pulmonol 2024;59(8):2113-30. doi: 10.1002/ppul.26948
86. Bester JC. The best interest standard and children: Clarifying a concept and responding to its critics. J Med Ethics 2019;45(2):117-24. doi: 10.1136/medethics-2018-105036
87. Kelly M, Jones S, Wilson V, Lewis P. How children’s rights are constructed in family-centred care: A review of the literature. J Child Health Care 2012;16(2):190-205. doi: 10.1177/1367493511426421
88. März JW. What does the best interests principle of the Convention on the Rights of the Child mean for paediatric healthcare? Eur J Pediatr 2022;181(11):3805-16. doi: 10.1007/s00431-022-04609-2
89. Harrison H. The principles for family-centered neonatal care. Pediatrics 1993;92(5):643–50.
90. Purssell E, Sagoo R. Children’s care: Family centred but child focused. Br J Nurs 2023;32(10):466-70. doi: 10.12968/bjon.2023.32.10.466
91. Ryan MJ, Lee LA, Carnevale FA, et al; RFP-PICU Research Collaboration. Parental and family presence are essential: A qualitative study of children’s lived experiences with family presence in pediatric intensive care. J Pediatr Nurs 2025;80:e228-e235. doi: 10.1016/j.pedn.2024.12.017
92. Baines P. Family interests and medical decisions for children. Bioethics 2017;31(8):599-607. doi: 10.1111/bioe.12376
93. Groll D. Four models of family interests. Pediatrics 2014;134(Suppl 2):S81-6. doi: 10.1542/peds.2014-1394C
94. Fauk NK, Dent E, Aylward P, et al. Protective and risk factors for social and emotional well-being of Indigenous children and adolescents: A rapid review. J Child Adolesc Ment Health 2025;36(1):1-60. doi: 10.2989/17280583.2024.2385307
95. Gelech J, Matthews E, Mazurik K, et al. Indigenous perspectives on childhood disability across Canada: A critical integrative review and implications for service providers. J Dev Phys Disabil 2026;38(2):357-90. doi: 10.1007/s10882-025-10020-0
96. Hardart GE, Truog RD. Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients. Crit Care Med 2003;31(7):1895-900. doi: 10.1097/01.ccm.0000084805.15352.01
97. Caruso Brown AE, Ciurria J. “Prix fixe” or “à la carte”? Pediatric decision making when the goals of care lie in the zone of parental discretion. J Clin Ethics 2021;32(4):299-306.
98. Gillam L. The zone of parental discretion: An ethical tool for dealing with disagreement between parents and doctors about medical treatment for a child. Clinical Ethics 2016;11(1):1-8. doi: 10.1177/1477750915622033
99. Krick JA, Hogue JS, Reese TR, Studer MA. Uncertainty: An uncomfortable companion to decision-making for infants. Pediatrics 2020;146(Suppl 1):S13-S17. doi: 10.1542/peds.2020-0818E
100. Salter EK, Hester DM, Vinarcsik L, et al. Pediatric decision making: Consensus recommendations. Pediatrics 2023;152(3):e2023061832. doi: 10.1542/peds.2023-061832
101. Weise KL, Okun AL, Carter BS, Christian CW; American Academy of Pediatrics, Committee on Bioethics, Section on Hospital and Palliative Medicine, Committee on Child Abuse and Neglect. Guidance on forgoing life-sustaining medical treatment. Pediatrics 2017;140(3):e20171905. doi: 10.1542/peds.2017-1905
102. Diekema DS. Parental refusals of medical treatment: The harm principle as threshold for state intervention. Theor Med Bioeth 2004;25(4):243-64. doi: 10.1007/s11017-004-3146-6
103. Barone S, Boss RD, Raisanen JC, Shepard J, Donohue PK. Our life at home: Photos from families inform discharge planning for medically complex children. Birth 2020;47(3):278-89. doi: 10.1111/birt.12499.
104. Ames SG, Delaney RK, Houtrow AJ, et al. Perceived disability-based discrimination in health care for children with medical complexity. Pediatrics 2023;152(1):e2022060975. doi: 10.1542/peds.2022-060975
105. Fitzgerald H. In your capable hands: Ethical practice, bias mitigation, and care for children who rely on chronic mechanical ventilation. J Pediatr Nurs 2021;57:1-4. doi: 10.1016/j.pedn.2020.10.014
106. Houlihan BV, Coleman C, Kuo DZ, Plant B, Comeau M. What families of children with medical complexity say they need: Humanism in care delivery change. Pediatrics 2024;153(Suppl 1):e2023063424F. doi: 10.1542/peds.2023-063424F
107. Jansen M, Moynihan KM, Taylor LS, Basu S. Complex decision-making in paediatric intensive care: A discussion paper and suggested model. J Bioeth Inq 2025;22(2):293-303. doi: 10.1007/s11673-024-10381-9
108. Major-Kincade T, Kim E, Price CA, et al. The use of biased language in the care of seriously ill children: A pilot study. Am J Hosp Palliat Care 2025;10499091251345723. doi: 10.1177/10499091251345723
109. Wilfond BS. Tracheostomies and assisted ventilation in children with profound disabilities: Navigating family and professional values. Pediatrics 2014;133(Suppl 1):S44-9. doi: 10.1542/peds.2013-3608H
110. House of Commons of Canada. Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities. October 3, 2024. Evidence No. 127 [Transcript] (Accessed April 7, 2026).
111. Larcher V, Craig F, Bhogal K, Wilkinson D, Brierley J; Royal College of Paediatrics and Child Health. Making decisions to limit treatment in life-limiting and life-threatening conditions in children: A framework for practice. Arch Dis Child 2015;100(Suppl 2):s3-23. doi: 10.1136/archdischild-2014-306666
112. Mercurio MR, Cummings CL. Critical decision-making in neonatology and pediatrics: The I-P-O framework. J Perinatol 2021;41(1):173-8. doi: 10.1038/s41372-020-00841-6
113. Nageswaran S, Gower WA, King NMP, Golden SL. Tracheostomy decision-making for children with medical complexity: What supports and resources do caregivers need? Palliat Support Care 2022;22(4):776-82. doi: 10.1017/S1478951522001122
114. Ray S, Brierley J, Bush A, et al. Towards developing an ethical framework for decision making in long-term ventilation in children. Arch Dis Child 2018;103(11):1080-4. doi: 10.1136/archdischild-2018-314997
115. Wightman AG, Freeman MA. Update on ethical issues in pediatric dialysis: Has pediatric dialysis become morally obligatory? Clin J Am Soc Nephrol 2016;11(8):1456-62. doi: 10.2215/CJN.12741215
116. Mauser D, Gazzaneo M, Santucci G, Klick J, Jump J. Three ifs and a maybe: The role of a reality check. J Pain Symptom Manage 2025;69(5):E437-8. doi: 10.1016/j.jpainsymman.2025.02.048
117. Kon AA. The “window of opportunity”: Helping parents make the most difficult decision they will ever face using an informed non-dissent model. Am J Bioeth 2009;9(4):55-6. doi: 10.1080/15265160802716811
118. Real de Asúa D, Lee K, Koch P, de Melo-Martín I, Bibler T. We don’t need unilateral DNRs: Taking informed non-dissent one step further. J Med Ethics 2019;45(5):314-17. doi: 10.1136/medethics-2018-105305
119. Orioles A, Morrison WE. Medical ethics in pediatric critical care. Crit Care Clin 2013;29(2):359-75. doi: 10.1016/j.ccc.2012.12.002
120. Jeong S, Knackstedt A, Linebarger JS, Carter BS. Moral distress and pediatric palliative care. Children (Basel) 2024;11(7):751. doi: 10.3390/children11070751
121. Ofosu D, Scott S, Kammerer E, et al. Caregiver-informed meta-synthesis of caregivers’ experiences with tracheostomy decision-making in pediatrics. Front Pediatr 2025;13:1574484. doi: 10.3389/fped.2025.1574484
122. Hollander SA, Axelrod DM, Bernstein D, et al. Compassionate deactivation of ventricular assist devices in pediatric patients. J Heart Lung Transplant 2016;35(5):564-7. doi: 10.1016/j.healun.2016.03.020
123. Kirsch R, Munson D. Ethical and end of life considerations for neonates requiring ECMO support. Semin Perinatol 2018;42(2):129-37. doi: 10.1053/j.semperi.2017.12.009
124. Machado DS, Garros D, Montuno L, et al. Finishing well: Compassionate extracorporeal membrane oxygenation discontinuation. J Pain Symptom Manage 2022;63(5):e553-e562. doi: 10.1016/j.jpainsymman.2021.11.010
125. Courageous Parents Network. NeuroJourney: Anticipatory guidance and resources for families and clinicians caring for a child with severe neurologic impairment (SNI). Rare Conditions and Diseases 2024;74:17-18.
126. Johns Hopkins University. Family Reflections: Deciding about Home Ventilation. 2019 (Accessed May 11, 2026).
127. Spike JP. The ethics of treatment for hypoplastic left heart syndrome (HLHS). Am J Bioeth 2017;17(7):65-66. doi: 10.1080/15265161.2017.1314707
128. Semer NB. The meaning of “doing everything”. Am Surg 2020;86(11):1482-84. doi: 10.1177/0003134820965948
129. Bourque CJ, Dahan S, Mantha G, Robson K, Reichherzer M, Janvier A. Improving neonatal care with the help of veteran resource parents: An overview of current practices. Semin Fetal Neonatal Med 2018;23(1):44-51. doi: 10.1016/j.siny.2017.10.005
130. Dahan S, Bourque CJ, Reichherzer M, et al. Community, hope, and resilience: Parental perspectives on peer support in neonatology. J Pediatr 2022;243:85-90.e2. doi: 10.1016/j.jpeds.2021.11.060
131. Kobrin A, Chan O, Crabtree E, et al. Referrals to peer support for families in pediatric subspecialty practices: A qualitative study. Matern Child Health J 2025;29(2):280-6. doi: 10.1007/s10995-025-04062-1
132. Pereira N, MacDonald C, Drobot A, Bennett A, Ali AB, Garros D. A peer and volunteer program for patients and their families in the pediatric intensive care unit: A pilot program evaluation. Front Pediatr 2021;9:711083. doi: 10.3389/fped.2021.711083
133. Schor EL, Klima T, Henry HKM, Gray A, Okumura MJ. Pediatric subspecialist referrals to peer support for families. Matern Child Health J 2025;29(1):57-66. doi: 10.1007/s10995-024-04033-y
134. Nakagawa TA, Ashwal S, Mathur M, Mysore M; Society of Critical Care Medicine, Section on Critical Care, Section on Neurology of American Academy of Pediatrics; Child Neurology Society. Clinical report—Guidelines for the determination of brain death in infants and children: An update of the 1987 task force recommendations. Pediatrics 2011;128(3):e720-40. doi: 10.1542/peds.2011-1511
135. Ertugrul I, Kesici S, Bayrakci B, Unal OF. Tracheostomy in pediatric intensive care unit: When and where? Iran J Pediatr 2016;26(1):e2283. doi: 10.5812/ijp.2283
136. Holloway AJ, Spaeder MC, Basu S. Association of timing of tracheostomy on clinical outcomes in PICU patients. Pediatr Crit Care Med 2015;16(3):e52-8. doi: 10.1097/PCC.0000000000000336
137. Amin R, Verma R, Bai YQ, et al. Healthcare use and costs in children receiving home mechanical ventilation in Ontario: A 14-year cohort study. Ann Am Thorac Soc 2024;21(10):1421-31. doi: 10.1513/AnnalsATS.202401-105OC
138. Baumbusch JL, Lamden-Bennett SR, Lloyd JEV. The impact of COVID-19 on British Columbia’s children with medical complexity and their families. Vancouver, B.C.: Supporting Progressive Inclusive Child-centered Education (SPICE) Lab, School of Nursing, University of British Columbia, 2020 (Accessed April 7, 2026).
139. Caicedo C. Families with special needs children: Family health, functioning, and care burden. J Am Psychiatr Nurses Assoc 2014;20(6):398-407. doi: 10.1177/1078390314561326
140. Falkson S, Knecht C, Hellmers C, Metzing S. The perspective of families with a ventilator-dependent child at home. A literature review. J Pediatr Nurs 2017;36:213-24. doi: 10.1016/j.pedn.2017.06.021
141. Gravdal Kvarme L, Albertini-Früh E, Brekke I, Gardsjord R, Halvorsrud L, Liden H. On duty all the time: Health and quality of life among immigrant parents caring for a child with complex health needs. J Clin Nurs 2016;25(3-4):362-71. doi: 10.1111/jocn.13056
142. Browne AJ, Lavoie JG, McCallum MJL, Canoe CB. Addressing anti-Indigenous racism in Canadian health systems: Multi-tiered approaches are required. Can J Public Health 2022;113(2):222-6. doi: 10.17269/s41997-021-00598-1
143. Richardson L, Boozary A. Truth and reconciliation in Canada’s health system. Lancet 2021;398(10303):825-6. doi: 10.1016/S0140-6736(21)01953-X

Disclaimer: The recommendations in this position statement do not indicate an exclusive course of treatment or procedure to be followed. Variations, taking into account individual circumstances, may be appropriate. Internet addresses are current at time of publication.