What follows is an illustrative case (from my imagination) that everyone who works in intensive care, palliative care or geriatrics will at one time or another have experienced;
A widow in her 80s is admitted with pneumonia. She is moribund. She has a long history of complex medical problems including severe dementia and is looked after at home, full time, by one of her daughters. The daughter is unmarried and has given up work to look after the patient. The treating team discusses treatment options with the daughter and after a long discussion all involved decide that, while the patient never expressed any specific end-of-life wishes, her daughter firmly believes that she would wish to be made comfortable in the event of a life-threatening illness. The team and daughter decide that the patient will be admitted to a medical ward and receive comfort measures only and specifically that she won’t receive antibiotics, IV fluid or any invasive measures.
Then the Daughter from America shows up. This daughter hasn’t seen her mother for many years, doesn’t talk to her sister and isn’t aware of how much is involved in caring for her mother. She demands that her mother receive aggressive life-saving treatment and be transferred to ICU with instructions for full active treatment including CPR. She is verbally abusive to staff and her sister and threatens to sue the hospital and various staff involved in her mother’s care.
Sounds familiar doesn’t it? We’ve all encountered a case (or multiple cases) where there is discord amongst family members about what the most appropriate course of treatment should be for a patient who has impaired capacity to make decisions. Anecdotally it seems that most commonly it is the family member who has come from furthest way, who hasn’t seen the patient for longest, who arrives latest in the patient’s course; who has the most unrealistic demands. I have been calling this “The Daughter from America Syndrome” as America suitably far away from Down Under. Of course the distressed family member can be a son, brother or cousin and can come from France, New Zealand or Singapore. America is used purely as a metaphor. I’ve encountered this phenomenon so often that I even came up with an equation;
Unreasonableness = (Distance travelled x time since last seen x time since onset of current illness) raised to the power 2 if the relative has come from North America.*
Well you can imagine my delight when I saw my prejudices vindicated in a black and white in a serious journal. And I wasn’t far off with the name either, with the authors of a great little paper from the April 1991 Journal of the American Geriatrics Society describing “The Daughter from California Syndrome“. Molloy et al describe the syndrome using a typical vignette (similar to the one above) and then posits why this phenomenon might occur and offers strategies for when it does.
The Authors wonder if denial, guilt and anger makes distressed family members seem irrational. This could be compounded by often longstanding intra-family conflict.
The authors then offer some strategies for dealing with the difficult family, including:
- A family meeting
- Making sure that all health care providers provide consistent information
- Allow the family to deliberate for a fixed period and follow up if there is disagreement.
This is all common sense stuff that we all do anyway, I hope. They hilariously end with the throw away line “Finally, if all of these measures fail, consult the geriatric service. Everyone else does.” Gold.
They also touch on the role of the courts as an absolute last resort in such cases, and remind us that, as health-care providers, we are under no ethical, or legal, obligation to provide care that we believe to be futile or harmful.
All in all a great little article (admittedly it’s a bit hard to find – you might have to actually go to the library) that’s well worth a read.
J Am Geriatr Soc. 1991 Apr;39(4):396-9.
Decision making in the incompetent elderly: “The Daughter from California
Molloy DW, Clarnette RM, Braun EA, Eisemann MR, Sneiderman B.
Department of Medicine, McMaster University, Hamilton, Ontario, Canada.
*I’m not anti-American. Far from it. I even drink IPA. It’s just that most of the far away family members I encounter are from the USA or Canada. I suspect if I was in the USA I’d be adding an Australian factor.