How doctors and families can work together in patient care

Mr. U* came to the hospital overnight with severe heart failure. His breathing was supported by a ventilator and he was sedated. Thus, our primary means of communication was via his daughter. His daughter, distraught, stayed awake through most of the night. She appeared suspicious about her father’s care, immediately asking my credentials when I entered the room and demanding that we discuss treatment decisions with her alone. The next morning on rounds, she openly disagreed with my overnight decisions in front of the attending physician, specifically berating me for what I thought was routine care. Later that day, when her father developed respiratory distress, she was yelling orders to the nursing staff — despite our team’s pleas to let us do our work.

Many health professionals would describe Mr. U’s daughter as a “difficult” family member, one who oversteps an unwritten code of conduct and interferes with a patient’s care. Doctors and nurses often struggle to deal with difficult family members. Maybe we should focus instead on how to prevent such situations.

In most cases, family members are invaluable resources for patients and health professionals. They can make a patient’s frightening hospital experience more reassuring. They can also provide vital information. Family input has dramatically altered my treatment plan for dozens of patients — all of those times for the better.

However, family members can also affect how we care for patients. I will openly admit to avoiding Mr. U’s room for the rest of my shift after his daughter embarrassed me during rounds. In other cases, doctors may delay discussing major treatment decisions (such as end-of-life conversations) to avoid conflict with a difficult family.

Are we right to feel this way towards these family members? Would doctors or nurses act any differently if they were the family member of a patient?

There is evidence to suggest that doctors might not. In one survey of senior physicians, each of them at some point felt compelled to intervene in their father’s medical care beyond what would be expected of a family member. In a follow-up survey, those physicians expressed concern about poor communication in their fathers’ care. In 2008, guidelines for physicians’ involvement in their family members’ care were even published in the Annals of Internal Medicine. The guidelines recommend that physicians ask themselves “What could I do in this situation if I did not have a medical degree?” and avoiding any acts that require a medical license.

I, too, have been a concerned family member. When my grandmother broke her kneecap last spring, her doctor noted that her fracture may be able to heal on its own and that we should defer any procedure. We begged the surgeon to operate so that she could walk in time for my upcoming wedding. She had the operation two days later.

If it is normal for doctors like me to be “difficult,” then maybe we should be less quick to characterize some family members as bad apples. After all, it is natural to be concerned about a family member. Disease is a shared experience among doctors, patients, and family. Consistent communication and shared decision-making may be the difference between a difficult family member and a helpful contributor to the care team.

I have seen positive interactions between health professionals and families that are worth replicating. In the intensive care unit (ICU), we hold regular family meetings that involve doctors, nurses, social workers, pharmacists, and other members of the care team. The care team, patient, and family sit in one room, with the patient and family allowed to ask as many questions as they would like. We then give the family a date of the next meeting to ensure a plan for regular communication. At my hospital, we have even been piloting a web page that provides families with daily updates about their family members’ care. The tool not only provides information; it allows family to notice mistakes and suggest changes to treatment plans.

Part of the answer is making families comfortable in a chaotic health care environment. Some hospitals and clinics provide a face-sheet that introduces a family to each member of the patient’s care team. One pediatric ICU even gives families a DVD to orient them to the hospital, with markedly high satisfaction rates.

There is never any justification for an abusive family member. However, the tools above ensure that family members are more involved in a patient’s care — and might make the difficult family member less difficult.

The day I left my cardiology rotation, Mr. U’s daughter stopped me in the hallway. She did not criticize; she did not yell. She thanked the team for caring for her father, inviting her to rounds every day, and allowing her to suggest changes to Mr. U’s treatment. The difficult family member was just a concerned child. She was not impeding my care. She was a partner with a shared concern — Mr. U’s health.

* Name changed for privacy purposes.