Pediatric End-Of-Life Care: An ‘Additional Layer Of Complexity’
EXECUTIVE SUMMARY
Ethicists can encourage clinicians to consider language used to communicate with parents and ask about the family’s values to ensure ethical pediatric end-of-life care. Ethics consults can help in the following scenarios:
- when parents disagree about end-of-life treatment goals;
- when there is a conflict between parents and the clinical team;
- when the family is demanding resuscitation when it is clear that the child will not benefit.
Education on the unique challenges of providing end-of-life care to children, the importance of self-care, and timely multidisciplinary debriefings are key strategies for improving healthcare staff’s experiences and the quality of care they provide, found a recent review of the literature.1
“Pediatric palliative care has become a well-established field,” notes Lainie Friedman Ross, MD, PhD, Carolyn and Matthew Bucksbaum professor of clinical ethics and associate director of University of Chicago’s MacLean Center for Clinical Medical Ethics.
One issue raised historically was the ethics of withholding and withdrawing life-sustaining treatment, including fluids and hydration. The American Academy of Pediatrics (AAP) has a long-standing statement outlining its permissibility and some of the criteria for when it is appropriate.2 A second ethical issue — what role the child should play in end-of-life decision-making — is also addressed in AAP policy statements.3 Ross feels clinicians would benefit from an ethics consult in the following situations:
- when parents disagree about end-of-life treatment goals;
- when the family is demanding resuscitation when it is clear the child will not benefit and the child is suffering.
“Ethicists can provide support to clinicians to resolve family disagreements,” says Ross. “They can work with families who lack trust in the clinical care team due to family-team disputes.”
Disagreement With Decisions
Clinical team members may disagree with a family’s decisions or the timing of a decision. “They may be angry because of the amount of suffering they believe a child has suffered, due to family’s decisions to push on long after the team believes that aggressive care is more burdensome than beneficial,” says Ross.
Ross says such moral distress can be exacerbated when a patient has been in a unit for a long time, or has had a protracted course during which time the care team has become quite emotionally attached to the patient.
Ethicists can provide support with a timely debriefing. “This can be particularly important if the child dies unexpectedly, or if there has been conflict between the many specialties that have been caring for a child,” says Ross.
Pediatric end-of-life care is different in that the child isn’t usually able to make his or her own decisions independently as some adults can, notes Becky Benson, MD, PhD, medical director of the Pediatric Pain and Palliative Care Program at University of Iowa Children’s Hospital. A decision may need to be made about whether to forgo treatment, or whether to choose an experimental or high-risk treatment.
“That adds an additional layer of complexity for pediatric healthcare professionals, and for parents as they’re trying to navigate what can be a very uncertain situation,” says Benson, also medical director for clinical ethics and director of the ethics consult service at University of Iowa Hospitals and Clinics in Iowa City.
It’s not always clear that the patient’s best interest, what the family is choosing, and what the medical team is offering are all aligned. “In those cases, involving someone with pediatrics ethics expertise can be extremely helpful,” says Benson.
If an infant or young child is under consideration for surgery with a fairly low likelihood of success, for instance, families often aren’t sure what to do. “They may feel pressure to make one decision or another, based on discussion with the healthcare team,” says Benson. Talking with an ethics consultant can help them figure out what’s most consistent with their goals and values, and what is best for the patient. The following are other ways ethicists can help:
- Breaking things down into a series of smaller decisions.
“It can be very overwhelming to think about some of the bigger decisions,” Benson explains.
- Asking clinicians to think carefully about the language they use.
At times, the healthcare team tells a parent that their child “needs” a treatment, such as a surgery or a tracheostomy. “If later on, we then tell them it’s an ‘option,’ or recommend that they don’t choose it, it can be very hard for them to fit that with their previous idea that this is something their child needs,” says Benson.
Asking families, instead, to consider a treatment or medication on a “trial basis” can minimize conflict. “This can help people recognize that taking a step in one direction doesn’t necessarily mean we need to continue on that path,” Benson explains.
- Reminding the healthcare team to ask about families’ values and goals.
“When they have to make a challenging decision, we can go back to that basic layer of values,” says Benson.
Often, the clinical team presents options in an “a la carte menu style,” says Benson. “We are then disappointed by the choice the family makes, when we really haven’t given them enough guidance.”
Knowing the family’s values and goals, she explains, “helps us make recommendations that are shaped by what the family has told us is important to them.”
REFERENCES
- McConnell T, Scott D, Porter S. Healthcare staff ‘s experience in providing end-of-life care to children: A mixed-method review. Palliat Med 2016 Apr 29. pii: 0269216316647611. [Epub ahead of print]
- American Academy of Pediatrics, Committee on Bioethics. Policy Statement: Guidelines on forgoing life-sustaining medical treatment. Pediatrics 1994; 93(3):532–536. Reaffirmed October 2008.
- American Academy of Pediatrics, Committee on Bioethics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 1995; 95:314-317.
SOURCES
- Lainie Friedman Ross, MD, PhD, Carolyn and Matthew Bucksbaum Professor of Clinical Ethics/Associate Director, MacLean Center for Clinical Medical Ethics, University of Chicago. Phone: (773) 702-6323. Fax: (773) 834-5964. Email: [email protected].
- Becky Benson, MD, PhD, Medical Director, Pediatric Pain and Palliative Care Program, University of Iowa Children’s Hospital/Medical Director for Clinical Ethics/Director, Ethics Consult Service, University of Iowa Hospitals and Clinics, Iowa City. Phone: (319) 356-7880. Fax: (319) 384-6295. Email: [email protected].
Ethicists can encourage clinicians to consider language used to communicate with parents and ask about the family’s values to ensure ethical pediatric end-of-life care.
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