Ethical Challenges in Pediatric Palliative Care at the End of Life

Educational Objectives

The goal of this program is to improve ethical decision making in pediatric palliative care. After hearing and assimilating this program, the clinician will be better able to:

1. Recognize the ethical principles encountered in pediatric palliative care.
2. Maximize effective application of ethical principles in palliative care.
3. Provide appropriate counseling on withdrawal of medical therapy for terminal patients.

Summary

Principal pillars of ethics: autonomy (ie, respect of a person's freedom to choose what is right for them), nonmaleficence (ie, do not harm), beneficence (ie, treatment choices are made with intent to do good), and justice (ie, equitable providision of care for all patients); application in individual situations varies in children vs adults

Informed consent, assent, and decisional capacity: in pediatrics, assent (ie, obtaining agreement from a minor) is used more often than informed consent, as most minors lack legal decisional capacity; parents are responsible for medical decision making until children are 18 yr of age, except in special circumstances (eg, emancipation), although a child's decision-making capacity should be considered at a certain age; when the child assents, the parents are still required to provide informed consent; when a clear, unquestionable benefit to treatment or intervention exists, assent is preferred but not required; in clinical studies with no clear benefit, the child is required to provide assent, with age of assent generally varying between 8 to 13 yr

Decisional hierarchy: autonomy — competent adults making informed decisions for themselves; substituted judgment — a surrogate makes decisions for a patient well known to them; applies to patients who previously had capacity and expressed their wishes to a known person; best interests standard — caretakers make decisions for patients who never had decisional capacity, who are yet to express their wishes, or those who lack decisional capacity; applies to adults and children, regardless of age

Consent vs assent

Case 1: MT, a 17-yr-old youth, was diagnosed with atypical teratoid rhabdoid tumor; 3 autologous stem cell transplantation (SCT) procedures were planned following initial treatment; despite continued clinical remission following the initial SCT, patient and parents decided to suspend treatment indefinitely due to declining quality of life from distressing and severe nausea and vomiting and right leg weakness and ataxia (worsened after the first SCT); disease recurred within months, but MT stated his wishes to enjoy his remaining time with as little discomfort, hospitalization, and medical intervention as possible; after attaining 18 yr of age, MT signed his own durable DNR; he died ≈ 6 mo after discontinuing treatment but had managed to live according to his wishes before reaching his final weeks

Case 2: JD, an 18-yr-old man, was diagnosed with high-grade metastatic osteosarcoma after initially presenting with right knee pain and swelling; he started chemotherapy (CTX) but developed a pathologic fracture; as the fracture was concerning for disease progression, he underwent above-knee amputation, rather than limb salvage; pathologic evaluation revealed 95% necrosis with negative margins; ≈ 1.5 mo after surgery, he stopped CTX because of the impact of nausea and fatigue on his quality of life; imaging performed 3 mo later did not reveal signs of disease relapse or progression; 6 mo later, while asymptomatic, scans demonstrated widely disseminated metastases; JD refused in-patient CTX; he returned 2 mo later with severe chest, arm, and shoulder pain; JD agreed to palliative radiation therapy (RT) after being informed that surgical resection was not possible; he returned 1 wk later with severe pain, nausea, and vomiting, and it was felt he could not tolerate aggressive CTX; he was admitted for palliative treatment and signed a durable DNR (DDNR); JD died at home 2 mo later

Discussion: despite only an age difference of only 1 yr, the first patient did not have decisional capacity within his first year, whereas the second patient did; adolescents and young adults display more risk-taking behavior than older individuals; per studies, rational thinking is controlled by the frontal cortex, which does not fully develop until ≈ 25 yr of age; the clinician should fully explore treatment options and address barriers

Decisional discord: case 1 — patient wants to stop treatment, but parents want to continue; parents have decision-making capacity, but assent is desirable, as the patient can physically resist treatment, and attempts to coerce patient cooperation (eg, sedation) may not be ethical; case 2 — patient desires treatment, but parents want to discontinue; considerations — patients’ abilities to express choices freely; their understanding of the procedure and its benefits, harm, and impact on life; if appropriate, the state may act as a surrogate and override the parents’ decision; whenever possible, the clinician should advocate for the patient

Autonomy vs beneficence: when examining autonomy, consider quality of life vs the patient’s best interests; goals and expectations of care are discussed in depth with patient and family; barriers to treatment should be addressed; alterations in treatment may provide improvement and allow continuation; otherwise, the decision is to be respected and the quality of remaining time maximized

Case 3: SM, a 10 yr of age boy born at 34 wk gestation with congenital encephalopathy, resulting in severe intellectual disability, global delay, cortical blindness, deafness, hypertonia, and seizure disorder; dependent on tracheostomy since age 3 mo; a pacemaker was placed at age 3 yr to treat severe bradycardia; a gastrostomy tube (G-tube) was placed during infancy to address feeding intolerance, with later transition to total parenteral nutrition; SM had resided in a long-term care facility for children for 5 yr and had increasingly frequent pediatric intensive care unit (ICU) admissions; his caregiver (grandmother), who also had custody and medical decision-making power, repeatedly insisted on having everything possible done, despite a sharp decline in SM’s health and quality of life over the last 6 to 8 mo; discussions with SM’s grandmother resulted a change in code status to DNR, limited interventions, and a nontransport order, with transfer to the transitional care unit for the remainder of life; the patient became unresponsive and unconscious after a seizure provoked during a sepsis event; after several days, during which there was no improvement, the family opted for comfort care only; he died peacefully and naturally several days later

Case 4: KS, a 2-mo-old baby girl with no previous medical history, was admitted to ICU after cardiac arrest and 40 min of resuscitation; despite return of circulation and spontaneous respiration, she suffered severe anoxic brain injury and multisystem organ dysfunction and/or failure, requiring multiple vasopressors and other medications, plus peritoneal dialysis; cardiac arrest was believed to originate from a congenital heart defect, although this was not confirmed; corrective surgery was offered, but prognosis was poor; status changed to DNR and “do not intubate” (DNI); a second neurologic consultation confirmed diffuse, severe cerebral injury, with low chance of meaningful recovery; care was redirected toward comfort; artificial nutrition and hydration were withdrawn; the patient died peacefully on hospital day 32 without distress

Forgoing or withdrawing medical interventions: the American Academy of Hospice and Palliative Medicine released a statement in 2011 endorsing the ethical and legally accepted use of withholding and withdrawing nonbeneficial medical interventions; these actions are morally indistinguishable and appropriate when consistent with the patient’s goals of care, often done with the intention of alleviating patient suffering and not done without informed decision making; only beneficial treatments are continued; withdrawing artificial nutrition and hydration is controversial and difficult in pediatrics, as both are forms of medical therapy; benefits and burdens should be considered in light of circumstances and goals of care; open communication between medical staff and the patient's family is important; patients and parents are best suited for making best interests decisions; both family and medical team are involved in balancing treatment benefits vs burdens and should jointly make decisions; with consensus, it is ethically supportable to forgo medically administered nutrition and hydration

Truth-telling

Case 5: SL, a 12 yr-old boy with metastatic osteosarcoma of the femur, underwent CTX but had rapid disease progression, with multiple distant metastases; during admission for pain control, imaging revealing extensive progression of metastases; patient and family decided to forgo treatment and opted for hospice care; the parents requested that SL be informed and included in all medical decision making; a child life specialist discussed the prognosis with patient's younger sister; palliative care clinicians discussed death and dying with the patient; he died after 1 mo at

Case 6: NC, a 17 yr of age youth with metastatic desmoplastic small round blue cell tumor of the abdomen treated for 5 mo with aggressive CTX, surgery, and RT; complications arose after treatment, necessitating colostomy and placement of G-tube; he also developed impotence and intermittent urinary incontinence; despite ongoing therapies, the tumor recurred 5 mo after initial treatment and NC slowly declined over ≈ 2 yr; initially, the patient refused discussion of prognosis, death, or code status and wanted to continue to pursue curative options; he was admitted for pain control and nutrition management; hospice care was initiated; after multiple complications and worsening of his condition, NC and family agreed to change his status to DNR and DNI; the patient died 48 hr later

Discussion: parents often ask medical teams to withhold information from their children to protect them; children do not always need to assent to treatment, but by the age of assent, patient education is important to allow participation; in some cultures, it is common for family members to desire that the diagnosis or prognosis be withheld from an ill loved one of any age; in the first case, patient's autonomy was respected,and telling his sister the truth was beneficial to her; the second patient did not want to be informed or included in decision making; however, he did not want to be intubated but had not signed a DNR; he had refused to name a medical proxy or arrange for power of attorney

Readings

Baines P. Medical ethics for children: Applying the four principles to paediatrics. J Med Ethics 2008; 34:141-145. doi:10.1136/jme.2006.018747; Cole MC, Kodish E. Ethics case: Minors' right to know and therapeutic privilege. Virtual Mentor: American Medical Association J Ethics 2013; 15:638-644. doi: 10.1001/virtualmentor.2013.15.8.ecas1-1308; Grootens-Wiegers P, Hein IM, Van den Broek JM, et al. Medical decision-making in children and adolescents: developmental and neuroscientific aspects. BMC Pediatr. 2017; 17:120. doi.org/10.1186/s12887-017-0869-x; Healy D, Mangin D. Clinical judgements, not algorithms, are key to patient safety — an essay. BMJ. 2019; 367. doi.org/10.1136/bmj.l5777; Motreuil M, Fortin J, Racine E. Children's assent within clinical care: A concept analysis [published online ahead of print, 2020 Dec 21]. J Child Health Care. 2020;1367493520976300. doi:10.1177/1367493520976300; Sasazuki M, Sakai Y, Kira R, et al. Decision-making dilemmas of paediatricians: a qualitative study in Japan. BMJ Open. 2019;9(8):e026579. Published 2019 Aug 19. doi:10.1136/bmjopen-2018-026579; Sisk BA, DuBois J, Kodish E, et al. Navigating decisional discord: The pediatrician's role when child and parents disagree. Pediatrics 2017; 139:e20170234. doi: 10.1542/peds.2017-0234; Wade DT, Kitzinger C. Making healthcare decisions in a person's best interests when they lack capacity: clinical guidance based on a review of evidence. Clin Rehabil. 2019;33(10):1571-1585. doi:10.1177/0269215519852987; Weise KL, Okun AL, Carter BS, et al. Committee on Bioethics; Section on Hospice and Palliative Medicine; Committee on Child Abuse and Neglect. Guidance on forgoing life-sustaining medical treatment. Pediatrics 2017; 140:e20171905. doi: 10.1542/peds.2017-1905.

Disclosures

For this program, members of the faculty and planning committee reported nothing relevant to disclose.

Acknowledgements

Dr. Cannone and Dr. Rossi were recorded at the Palliative Care Symposium, held virtually on September 17, 2021, and presented by Virginia Commonwealth University (VCU) School of Medicine, the Palliative Care Programs at VCU Health, and Bon Secours Mercy Health in Richmond, VA. For information on future CME activities from this presenter, please visit https://vcu.cloud-cme.com. Audio Digest thanks the speakers and presenters for their cooperation in the production of this program.

CME/CE INFO

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The Audio- Digest Foundation designates this enduring material for a maximum of 0 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

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Lecture ID:

PD680401

Expiration:

This CME course qualifies for AMA PRA Category 1 Credits™ for 3 years from the date of publication.

Instructions:

To earn CME/CE credit for this course, you must complete all the following components in the order recommended: (1) Review introductory course content, including Educational Objectives and Faculty/Planner Disclosures; (2) Listen to the audio program and review accompanying learning materials; (3) Complete posttest (only after completing Step 2) and earn a passing score of at least 80%. Taking the course Pretest and completing the Evaluation Survey are strongly recommended (but not mandatory) components of completing this CME/CE course.

Estimated time to complete this CME/CE course:

Approximately 2x the length of the recorded lecture to account for time spent studying accompanying learning materials and completing tests.