Clinical bioethics consultations are opportunities to foster mutual respect and patient- and family-centered care. This can include conversation about and analysis of ethical uncertainties or disagreements related to clinical care. Our goal is to help achieve the best care for St. Jude patients by helping to find and work through sources of perplexity or conflict. These issues may arise during the care of an individual patient or creation of clinical policies. Consultations can be requested by patients, families, clinical staff, or administrators.
Patients and families may consider a bioethics consult helpful when:
- They do not feel they have been heard or understood
- Their feeling of trust in a member of the care team is lost or fragile
- They do not feel their unique role as patient or parent is duly valued
- They are unsure how to choose between difficult options about their child's medical care, or when they disagree with the recommendations of their child's healthcare team.
In collaboration with families, St. Jude bioethics consultants can:
- Talk through pros and cons of a decision
- Help you clarify your thoughts and values related to your child's care
- Gather information related to your decision
- Tell you if laws or policies apply to your child's situation
- Communicate with your healthcare team and help with disagreements about your child's care
- Offer advice and suggestions
Examples of questions healthcare providers or hospital staff may ask a bioethics consultant include:
- What should I do if a parent requests that I not tell a child about his/her illness?
- What are my obligations to a child whose parents do not follow the recommended care plan?
- What should I do when a parent requests a treatment that I believe is inappropriate?
- What should I do if I am worried that a child's perspective on treatment decisions is being ignored by their team or family?
What to expect from a consultation
Once a consult is requested, a member of the Ethics Committee will contact you within 24 hours if the issue needs immediate attention. If it is a less urgent matter, it may take 72 hours to one week for a member to schedule a time to talk with you and gather basic information.
Depending on the needs of the family and team, different levels of involvement may be indicated, including: a phone call or in-person meeting, a multidisciplinary team meeting, and/or conversations with a patient or family. Our meetings are informal and may include any additional participants the requester believes would be helpful. The bioethics consultants will try to get a full picture of what the issue is, your viewpoints, and why. We will provide suggestions about what to do next. If appropriate, we may refer some issues to others who are better able to address them.
Bioethics consultants offer advice and recommendations for families, clinical staff, and administrators facing difficult choices; they do not make or enforce decisions. We can provide a report or write a note in the medical record to document the discussion and keep the entire care team informed. Alternatively, within legal constraints, we can keep conversations confidential.
Consultations are handled by an individual or a small team of professionals trained in clinical ethics. They are separate from the medical team and other support services like Social Work or Spiritual Care, although they may also serve on those teams when they are not performing a bioethics consultation.