The pediatrician caring for a child with a life-threatening condition may encounter the challenge of having to compassionately and authoritatively assist this child and her family with end-of-life decisions. The discussion below offers guidance for pediatricians who must navigate these difficult conversations.
Medical and social literature has clearly documented that, while nearly all terminally ill people wish to die in the comfort of their home surroundings, most will die in a hospital setting with medical paraphernalia and limited access to loved ones. In addition, only about 20% of the population has any sort of advance directive (for example, a health care proxy or living will). These observations point to the need and importance of end-of-life (EOL) discussions.
Entering into this discussion requires patience and wisdom, and the opportunity to engage in this conversation may be offered by the parent or the patient. Do not be afraid of the “Doctor, what would you do?” question. Even though it is best not to answer the question immediately, it gives the practitioner the permission to ask important questions that should ultimately allow a deeper and more comprehensive understanding of the dynamics at play in the medical-ethical relationship.
EOL healthcare decision-making is complicated by a number of independent yet related factors.
- The unknown aspects of the disease and the inability to make accurate predictions regarding the disease process
- The parties involved (patient, family, and the medical team)
- The coexisting principles of autonomy and authority
- The coexisting issues of medical preferences, the benefit/burden analysis, and medical futility
In the case of the pediatric patient with a terminal illness, the added dimension is at least twofold.
- How much should the patient be told?
- How much participation in decision-making should the patient be granted (and by whom)?
Precedent autonomy: Does the patient have decision-making capacity, and can the patient grant informed consent? To do so, the patient must show evidence of
- Having received the medical information
- Being able to process the information
- Being able to make a decision that is free from coercion
Substituted judgment or best interest
- The patient does not have decision-making capacity.
- The medical decision is made by someone other than the patient, typically the parents, but not with unlimited authority, as boundaries do exist.
Should there be shared decision-making, and how does this happen? Consider the four components of shared decision-making.
- Both doctor and patient (parent) are involved in the process.
- Both share information with each other.
- Both share treatment preferences.
- Both agree on the treatment plan to implement.
Terms heard in these discussions: medical preferences, medical facts, quality of life, allocation of resources, benefit/burden analysis, religious faith and miracles, autonomy, health care proxy, and court directive.
PROMOTING STRONG, STABLE FAMILIES
The age and the cultural considerations of the child present specific challenges.
The parent often grants “informed permission with pediatric assent.”(1) Assent includes the child’s awareness, informing of available treatment options, and assessing the child’s understanding and acceptance.
Six “E’s” of excellence:
- Establish an agreement with everyone.
- Engage the child where the opportunity arises.
- Explore what the child knows about the disease and the process.
- Explain answers to the child’s questions with honesty.
- Empathize with the child.
- Encourage the child to be involved in his or her medical care.(2)
Children want to be involved.(3)
Chronically ill adolescents want to initiate the conversation about their wishes earlier in the course of a life-threatening illness.(4)
Parents often operate from a best-interest standard.(5)
Parents appreciate having detailed information.(5)
There are three elements to the physician-patient-child communication:
- Interpersonal sensitivity
- Partnership building (3)
When choosing in a child’s interests, parents must try to separate the love and commitment they have for their child (their interest in being parents) from the interests of their child.(6)
Parents want to be involved in treatment decisions, and this involvement may affect both parent satisfaction and the outcomes of care. Telephone communication has been strongly linked to shared decision-making (used in non-life-threatening conditions).(7)
Information exchange is in the right balance.(5)
Decision-making should involve both parents. Physicians serve as the advocate for the child in the discussion and decision-making.(5)
The American College of Pediatricians supports the withholding or withdrawing of medical intervention if the projected burdens to the patient outweigh the projected benefits.
The College also supports not providing treatment if it is judged to be harmful or of no benefit to the patient, or if the treatment is deemed “futile.” The College cautions pediatricians to be mindful that if a treatment is deemed futile based on its cost and/or the amount of reimbursement received rather than the impact on the patient, this runs contrary to the moral principles of beneficence and nonmaleficence due to each patient (http://missinglink.ucsf.edu/lm/ethics/Content%20Pages/fast_fact_bene_nonmal.htm).
The College does not endorse the withholding or withdrawing of medical nutrition and hydration for the same reason.
A robust and useful discussion of EOL issues will necessarily include the notions of patient autonomy, parental authority, beneficence, and the patient’s best-interest standard.(8)
Many of the considerations listed under the following three perspectives could and/or should be presented in more than one of the perspectives.
The Patient Perspective
The patient must be included in the decision-making. In recognizing the patient’s age and ability to understand and comprehend details of the medical process, consider the following:
- What the patient should be told and when
- How much the patient should be allowed to participate
- How much dominance the patient’s position should hold
- How the siblings (if any) should be included
- How to allow engagement in the general conversation
- How to allow participation in the identification of treatment
- How to let the patient say “goodbye”
- How to accept treatment failure
The Parental Perspective
In addition to the items listed under Patient Perspective, consider the following:
- How to engage in meaningful conversation with the nuclear family (other members of the family, as appropriate) and the medical team
- How to express compassion, care, and protection
- How to support each other during the illness
- How to prepare for emotional outbreaks
- How to communicate medical details to those who are not family members
- When to request assistance from clergy, a psychologist, and other professional counselors
- How to select and engage the proposed medical treatment plan
- How to employ advance directives and treatment refusals
- How to engage the possible retreat from active treatment to palliative care and hospice
- How to prepare for conflict among the decision-makers
The Medical Team Perspective
- Consider how to interact, lead, and cooperate.
- Consider how to meaningfully engage both the patient and the parent.
- Be aware of expressions of paternalism, the importance of shared decision-making, and the pitfalls of informed consent.
- Consider the notion of medical futility and the importance of resource allocation.
- Consider how and when to suggest withdrawal of treatment.
- Consider how and when to present options of palliative care and hospice.
- Consider how to present research participation.
- Consider how to present organ donation.
- Consider how to prepare for possible conflict in decision-making.
When Conflicts Arise:
- Consider the facts and gravity of the situation.
- Consider the maturity, knowledge, and intelligence of the child.
- Acknowledge the strengths and reasons for the disagreement.
- Know when to employ skilled counselors, religious leaders, and the courts.
Conclusion and Recommendations:
- Most often it is best if a joint decision (involving patient, parent, and the medical team) is reached, as it will reflect all positions and exhibit cooperation, care, and compassion.
- Committee on Bioethics. Informed consent, parental permission, and assent in pediatric practice. 1995;95(2):314-317.
- Student paper, author unknown.
- Committee on Bioethics. Guidelines on forgoing life-sustaining medical treatment. 1994;93(3):532-536.
- Lyon ME, et al. Who will speak for me? 2009;123(2):e199-e206.
- de Vos MA, et al. Talking with parents about end-of-life decisions for their children. pediatrics.org/cgi/doi/10.1542/peds.2014-1903.
- Baines PJ. Medical ethics for children: applying the four principles to pediatrics. J Med Ethics. 2008;34:141-145.
- Fiks AG. Shared decision-making in pediatrics: a national perspective. 2010;126(2):306-314.
- Cummings CL, Mercurio MR. Autonomy, beneficence, and rights. Pediatr Rev. 2010;31(6):252-255.
- Levetown M. Communicating with children and families: from everyday interactions to skill in conveying distressing information. 2008;121(5):e1441-1455, file:///C:/Users/Lisa/Downloads/e1441.full.pdf
- Moffett KS. End-of-life treatment and palliative care. Pediatr Ann. 2011;40(5):232-234.
- Stump BF, Klugman CM. Last hours of life: encouraging end-of-life conversations. J Clin Ethic. 2008;19(2):150-169.
- American College of Pediatricians position statement, “Neonatal Euthanasia: The Groningen Protocol,” https://www.acpeds.org/the-college-speaks/position-statements/life-issues/neonatal-euthanasia-2.
- EPIC Project, Northwestern University, “Education for Physicians on End of Life Care,” http://endoflife.northwestern.edu/last_hours_of_living/module12.pdf.