Family discord at Thanksgiving is a well-worn joke. Childhood ghosts resurface. Adult children openly argue about whether to serve Mom’s green bean recipe or the new in-law’s vegan mashed potatoes. Old wounds reopen. Juvenile power disputes fester.
End of Life Decisions
Such intimate battles can be even worse in a health crisis. At the end of Mom’s life, her adult children may have very different views on medical care.
Louisiana law lays out a hierarchy of who can consent for medical care when the patient is incapacitated or unable to consent. LAMMICO recently published an article on who may consent for patients without advanced medical directives. The spouse is the first surrogate decision maker, then the adult children, and then the parents. When there is more than one decision maker, they all might not see eye-to-eye on very hard decisions. The hospital may end up in the middle of a family fight.
Mom, a widow who is unconscious and needs a PEG tube, has three adult children. The oldest lives with Mom as her caregiver. This middle child is a no-nonsense executive, and the youngest is currently backpacking across Europe.
The oldest child is at the bedside and wants to try Reiki alternative healing before consenting. The middle child insists that the tube be inserted immediately. She says she knows what Mom would want. No one knows how to get in touch with the youngest child. Mom has no living will or advance directive to give her children guidance about what she wants.
While Louisiana law provides that children can consent for an incapacitated and unmarried parent, the law does not require that all the children consent. In this example, the hospital does not have an obligation to go to extraordinary lengths to contact the youngest child. Documentation that he or she cannot be contacted is sufficient.
So, the oldest and middle child are left, and they don’t exactly agree. As a strictly legal matter, the consent of one child is adequate to move forward. Telephone or oral consent is valid, assuming the consent form or record properly documents the circumstances.
The Story Doesn’t Stop There
Moving forward with PEG placement and leaving out the oldest child’s opinion may be technically legal consent, but it is often not advisable. Patient-physician communications frequently break down at this point. Making care decisions for a dying mother is extremely complex and emotionally charged.
Sensitive handling can turn this potential problem into an opportunity to enhance the relationship with the family. Here are a few guidelines to follow when dealing with an incapacitated patient’s family:
- Families need both a physician’s clinical judgment and their compassion.
- Plan to spend time with the family. Find a quiet place to talk. Don’t crowd everyone around the bed.
- Various family members may be present. Start with identifying the relationship of each to the patient.
- Next, listen. Establish whether or not the family accurately understands Mom’s medical condition. Ascertain what they understand of her prognosis.
- Encourage a discussion of Mom’s values. Determine whether Mom herself would have chosen to try a Reiki treatment. Remind the children that this decision might not be the one that they would make for themselves.
- Language counts. “Do you want to have everything done for Mom or not?” presents an excruciating option. The family may imagine Mom abandoned in the bed with no care. Instead, reframe the option. The choice is whether everything will be done for her comfort, compared to doing everything for her survival. It may be useful to liken it to a choice between prolonging her life and preserving the quality of her life.
- If there is still no consensus, and no emergency, consider a referral to the hospital ethics committee.
These difficult discussions, when done with empathy and skill, can provide comfort to the family and dignity to the patient.
Am Fam Physician. 2004 Aug 15;70(4):719-723