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.
PMID: 2010590

*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.

10 thoughts on “The Daughter from California Syndrome

  1. Good post.

    Emphasise the point that “as health-care providers, we are under no ethical, or legal, obligation to provide care that we believe to be futile or harmful.”

    Another situation sometimes arises – the frail elderly person who still has testamentary capacity, but for whom the offspring arrive brandishing an ‘advance directive’ or ‘medical power of attorney’ – insisting that they can accept/decline treatments EVEN THOUGH THE PATIENT CAN MAKE OWN DECISION. Usually worth a gentle reminder that mumd/dad aint written off yet….

    Bottomline – family meetings are useful. And even if the daughter from States wants full active measures, it may not be the right thing. After all “Just because you want a pony for Xmas, doesnt mean you’re going to get one”

    …or refer geri’s….

  2. Ahhhhh yes
    Seen this plenty of times.
    Often we are “trying to keep granny alive” to allow estranged children to travel from afar to say “goodbye”.
    We are then hoodwinked when they arrive and insist on all the bells and painful, hopeless whistles.
    Maybe we should spell it out on the phone before they book the flight?

    Guilt is a powerful motivator. I think a “family consensus” is best, let the outliers deal with it in their own way. But not allow them to prolong a family member’s suffering. Not good palliation, not good medicine and inhumane. That is how I would spell it out

  3. Excellant post! We in EMS see this as well especially around holidays like Thanksgiving and Christmas. We will empty the nursing homes when the out of town family members start to arrive. They expect the ED doc to completely change the patient’s course of treatment on a Saturday night without consulting the patient’s primary physician.

  4. As a proud Californian, I demand that you change the name of this condition to “the Daughter from Perth Syndrome”.

    No, seriously, thank you for your great post and for providing us a name to this challenging situation — well done.

  5. Wonderful post. I’ve also found there is another “layer” of guilt that comes through in family meetings, where the family doesn’t want to be responsible for pulling the proverbial plug. Even if there is an advanced directive!

    Getting the family to realize that their family member (the patient) made this decision – and trying to repeat this over and over within the meeting – can sometimes displace any feelings of guilt/responsibility from the family and remind them that the decision was made and lies where it truly belongs – in the hands of the person lying on the hospital bed.

  6. Fantastic Post! Thank you. I echo Kangaroo’s comment…
    This needs profound emphasis: “as health-care providers, we are under no ethical, or legal, obligation to provide care that we believe to be futile or harmful.”
    This was somehow glossed over in my US medical school training. It’s a travesty that this isn’t focused on more. I do believe it’s gaining ground though and appreciate you highlighting it from down under!

  7. I had never heard of this till today. My husband is 90, Dx: Dementia; PTSD; Delusional Episodes but still coherent much of the time. We have been married happily for 26 yrs, he had a delusional episode, he called police on me, he was taken out of the home, I returned & he was gone, now his daughter moved here to take over, they cleaned out bank accounts, 4 days after she arrived my husband filed for divorce. It has been a horrible nightmare I am trying to get through. My husband would never have done these things but the dementia is allowing him to make irrational decisions. The judicial system should never have allowed this to happen but, with them taking all our funds I cannot afford an attorney with a darn. I know I will survive this but my heart is broken. His children called several times a year but now think they have to do this? Why? A doctor told me about the California Daughter Syndrome today. It certainly fits.

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