There are times when I think a bit of hell on earth is to be a physician sitting at the bedside of a sick family member in the hospital. You know everything that will hurt, every treatment that can harm, and everything bad that can happen if all the things that have to go right don’t go right. The paranoia that something might go wrong if you don’t pay constant attention can be paralyzing, making it difficult for you to remove yourself from the bedside.
If the paranoia does not make you sick with worry, the guilt just might. If you fail to prevent an error or complication from harming them, you failed both as a physician and as a family member. The guilt at failing in your role as the good shepherd is pounded home by the grief at your flock member’s added misery. The caregivers you are watching over for every tiny error or clinical misstep as though they cannot be trusted to treat your loved one unsupervised are the kind of physicians, nurses and technicians you trust every day as teammates in the care of your patients.
If the hospital your family member is in is your hospital, they are not just the kind of people you work with, they are the people you work with. It’s your friends and colleagues whose hands you are watching to see if they wash, whose care you are scrutinizing in minute detail, whose … you get the picture. If you are unhappy with some part of the care, it’s your friends with whom you are unhappy.
The role of the physician family member is probably confusing to everyone involved, most importantly to the patient who is your family member. When they ask my opinion, they don’t know if they are getting sound medical advice or just advice that sounds medical. When they choose to follow a recommendation from their primary care physician that I disagree with, should they doubt the doctor in their family or their real family doctor? Should they follow my advice because they love me or because they think I know what I am talking about?
If my family is not sure I know what I’m talking about in discussions about their care, that’s because I’m not sure I know what I am talking about. As a family member I’m not detached enough from the patient to think clearly as a physician, and a physician driven to avoid harm to a patient at all costs can end up harming them by wanting too many tests, too many procedures, or subjecting them to endless care that does not change the long-term outcome.
That risk of overtreating is also borne by the caregivers, who may give your emotionally driven recommendations for more aggressive care more credence than they should because you are a physician. I have found myself making suggestions in the care of family members, but asking caregivers not to do what I ask just because I am a physician; I want their independent judgment about what might be my bad, “overcaring” idea.
There’s much for all of us to learn from my experience, even though most of you are not physicians. First, don’t focus on whether every treatment is exactly the right treatment option, because even a physician does not know enough about every illness to know what’s the right treatment in every case. Focus more of your vigilance focus on key safety processes in care — hand washing, medication administration, etc. Third, focus on being informed about what’s going on, what the risks and benefits of treatments are. Fourth, make sure care is being coordinated among caregivers.
Being the physician family member at the bedside may be the hardest work I have ever done as a physician, harder than putting a breathing tube down an airway obscured by bloody froth, or making a life-saving diagnosis in the midst of a crisis, or even closing the still-open eyes of the newly dead. That’s because of the fifth and final thing to learn from my experience: forgive yourself if you don’t get it perfectly right, because you will not.
Erik Steele is the former chief medical officer of Eastern Maine Healthcare Systems. He now works at Summa Health System in Akron, Ohio.