Making Difficult Medical Decisions
Sometimes you and your child’s healthcare team must make very difficult decisions about your child's treatment plan. You may need to make a decision that involves your personal values or spiritual beliefs. These decisions, called "ethical dilemmas", can be stressful, frightening and confusing.
When faced with an ethical dilemma, a person must think about how to act and make choices based on their morals – their beliefs about right and wrong. A person's values and their beliefs about life, death, health and suffering help to make these choices. In many situations, it's not easy to choose what is best for your child because there may be multiple “right” choices, or because you disagree with others about what is “right.” Other times, it may feel like there are no good options, and it is difficult to find the most helpful and healing direction for care.
When you face an ethical dilemma concerning your child's care, our Ethics Advisory Board is here to help.
What Is the Lurie Children's Ethics Advisory Board?
The Ethics Advisory Board is a diverse group of Lurie Children’s staff including doctors, nurses, social workers, chaplains, and other professionals. Two parents of Lurie Children’s patients also sit on the board. Members of this group have a broad knowledge of pediatric ethics and extensive experience helping healthcare professionals and families make difficult decisions. They're available to support you and your child’s medical team in every way possible as you work together to make important decisions about your child's treatment.
Besides providing clinical consultation services, the Ethics Advisory Board facilitates education on key pediatric bioethics topics for hospital staff, and teaches students and trainees at all levels. Several of our members publish regularly in the bioethics literature. We are actively engaged in the larger bioethics community at Northwestern University and the Feinberg School of Medicine’s Center for Bioethics and Medical Humanities, directed by Kelly Michelson, MD, MPH.
Vision Statement
By cultivating a supportive environment, encouraging ethical discourse unconstrained by traditional medical hierarchies, and providing high quality education and leadership, we will develop a robust ethics program that ensures the ability of the organization, its employees, and the medical staff to provide the finest patient- and family-centered care. Through incremental, sustainable growth we will ultimately build a world class Ethics Center to support the institutional mission and to advance the field of pediatric bioethics through scholarship and research.
Mission
To nurture the moral vitality of the clinicians and staff who care for our patients and families, as well as the organization as a whole; to aid patients, families, and medical teams facing ethical dilemmas; to facilitate and guide collaborative efforts within the university and local communities to thoughtfully address relevant ethical issues; and to lead the field of pediatric bioethics on a national and international level through excellence in education, clinical and organizational ethics, and scholarship.
What You Can Expect From an Ethics Consult
An ethics consult can be requested by you, or by anyone involved in your child’s care. A member of the Ethics Advisory Board who is not otherwise involved with your child’s care will talk with you by phone to understand your concerns and the situation for your child. He or she will also review your child’s medical record and talk with members of your healthcare team to fully understand the ethical issues you are facing. The ethics consultant will help you and your healthcare team think through the relevant ethical issues and identify ethically acceptable options. This often involves meeting together with you and your healthcare team. If you do not feel comfortable meeting in a large group, we will find other ways to facilitate communication, so that you and your healthcare team can understand each other's concerns and develop a mutually acceptable plan.
The final responsibility for decisions about your child's care belongs to you and the healthcare team. An ethics consult supports you and your healthcare team when you must make difficult decisions about your child's treatment. After an ethics consult, the findings and recommendation will be recorded in your child’s medical record, just like any other medical or surgical consult. You and the healthcare team will continue to work together to care for your child and the Ethics Advisory Board will be available for follow-up as needed.
Frequently Asked Questions
The Ethics Advisory Board accepts requests for consultation from anyone with an interest in the wellbeing of the child. This includes members of Lurie Children’s staff as well as the patient or any family member of the patient.
When requesting a consultation, you must identify yourself to the ethics consultant, so that we can stay in contact and continue to support you throughout the process of consultation. Under limited circumstances, the Ethics Advisory Board may be able to conduct a consultation without identifying the person who requested the consult, but this cannot be guaranteed.
Some types of decisions with which the Ethical Advisory Board can help:
- You and the healthcare team disagree about the best thing to do for your child.
- Your child wants to stop treatment and you want to continue it, or vice versa.
- You and your family members disagree about how much your child should be told about the illness.
- You disagree with the doctor about the value of future treatment.
- A treatment plan conflicts with your cultural or spiritual beliefs.
- Your child is over 18 years of age, and he or she wants care that is different from the care you want for him or her.
No. Any child cared for by a physician affiliated with Lurie Children’s can receive an ethics consult.
You are welcome to reach out to the on-call ethics consultant. He or she can help figure out if your concern is ethical in nature, and if not, direct you to the appropriate person to help.
How Can I Request an Ethics Consult?
A member of the Ethics Advisory Board is available 24 hours a day, 7 days a week. Call 312.227.4000, and ask the operator to page the on-call ethics consultant for you. If you have not received a call back within 15 minutes, please have us paged again. You can also ask your bedside nurse or any member of your healthcare provider team to request a consult on your behalf.
For non-urgent matters or general questions about the Ethics Advisory Board, you may contact us at ethics@luriechildrens.org. This is a confidential email address maintained by the ethics leadership team.
Meet the Team
Chair: Erin Paquette, MD, JD, MBe
Associate Chair: Irini Kolaitis, MD
Ethics Consultants
- Karen Carroll, PhD, RN
- Nanette Elster, MD
- Jessica Fry, MD
- Rachel Hickey, MS, CGC
- Irini Kolaitis, MD
- Abigail Lang, MD
- Jim Manzardo, Chaplain
- Kelly Michelson, MD, MPH
- Elaine Morgan, MD
- Courtney Nerovich, RN
- Angira Patel, MD, MPH
- Erin D. Paquette, MD, JD, MBe
- Erin Rowell, MD
- Seema Shah, JD
- Soo Shim, MS, LCSW
- Linnea J. Winquist, Manager of Spiritual Care
Committee Members
- Kendra Allaband, Vice President and Deputy General Counsel
- Elizabeth Bleed, MD, MA
- Katherine Brandt, Clinical Research Coordinator III
- Elizabeth Horan, MSN, APRN, CPNP-PC, CPHON
- Megan Keller, Chaplain
- Bryan Malas, MD
- Allison Miller, RN
- Rebecca Mitsos, Child Life Specialist
- Sarah Neault, MSN, APRN-NP, CPNP-PC
- Angira Patel, MD, MPH
- Aarabhi Rajagopal, MD
- Ashley K. Selley, MD
- Diane D. Sheehan, FNP-BC, APRN-NP, ND
- Laura H. Swibel Rosenthal, MD
- Fatema Zanzi, Senior Vice President and Chief Legal Officer
Non-Voting Members
- Mary Golden, Vice President Legal Counsel and Risk
- Linda Sordilla, Family Advisory Board Member