Nothing’s perfect. But I don’t think it’s too much to expect for things to work out acceptably, at least some of the time. There follows a sad story with only an ambiguous and implied moral.
Dusan Havel (not his real name) is 89 and until recently lived in a tiny rented apartment inVancouver’sWest End. Mr. Havel hails fromBohemia(in theCzech Republic) where he studied horticulture in university and developed his own landscaping business which he re-established when he got toCanadain the late 1950s. He never married, but carried on an active social life until about eight years ago when a blood disorder and arthritis confined him to his apartment, except for twice-monthly treks to the hospital for transfusions.
I met him about a year ago. The referral notes warned he was paranoid, resistant to care, and unreasonably demanding so I was geared up to deal with a crabby miserable old crock. In fact Mr. Havel was charming in a wry Central European way, cracking jokes at his own expense and being gently ironically deferential to me, “The Doctor”. We got along just fine. I was able to get rid of three-quarters of his medication and he felt a bit better.
Often I had to buzz the manager to get in because Mr. Havel couldn’t get to the door. His daily home support workers had their own key, but incredibly the landlords wouldn’t let me have one, and the home support agency refused to let me copy theirs. His mobility was so-so and often when he did come to the door his pants were down, having just been in the bathroom. The apartment was shall we say minimalist, but always clean and full of strange-looking plants which he somehow kept alive. Mr. Havel was slowly losing weight, not eating well, and hated the trip to the hospital for transfusions. I got him eating much better-tasting cheaper meals by discontinuing the special diabetes and low-salt diet he was on (he didn’t have diabetes or high blood pressure…).
We talked about the future. “I’m an old man,” he said in his hoarse high-pitched accented voice. “I’m ready to die, but let it come to me. I’m not going to jump out any windows.” Two or three times we talked about continuing the transfusions or not, both of us knowing that if he stopped them he would die in a few weeks, and each time he shrugged his shoulders and said, “Let’s keep going for now.” One thing he was absolutely sure about was staying in his apartment. He said he’d rather die than end up in a hospital or nursing home. Of course I promised to support him in that.
Just back from three weeks away I was stunned and bewildered two weeks ago to find that Mr. Havel in the hospital. What had happened? Well, somehow the responsible people (who ended up being replacement home care nurses who didn’t know him and home support agency supervisors) didn’t call the doctor on call for me, who would have had access to my electronic record documenting Mr. Havel’s wishes. When he fell and seemed to be “going downhill”, they called an ambulance. He sent the paramedics away, only to have someone call them again the next day. I guess he must have been drowsy or unable to resist their intentions for some other reason, so he was trucked into the ER.
The hospital diagnosis was anemia and “failure to thrive”. Nothing specific: no heart attack, no pneumonia, no urinary tract infection, no fracture, just his usual well-known, well-documented, and well-treated low red blood count. Our home care of community frailty program tried to convince the hospital “team” that we could manage him at home (he wasn’t much different from how he had been all along). But the opinion at the hospital was “he can’t cope”. He had urinary incontinence (couldn’t get to the bathroom because the siderails were up on his hospital bed), fecal incontinence (diarrhea from hospital-acquired Clostridium Difficile infection), confusion (delirium from the C Diff and who knows what else), and impaired mobility. When I saw him on the ward he was nodding forward onto his breakfast, but in spite of being half asleep he was able to stand and transfer to the bed with no physical assistance. About the same ability to get around that had served him adequately at home.
Today a very nice internal medicine resident called asking me to help them figure out whether Mr. Havel (who understands he’s going to a nursing home and is now firmly refusing transfusions) is mentally capable of making that decision. I’ll go and talk to him, but I’m sure he is.
What have we learned? Nothing new. “Advance directives” may not count for much. “Client-Centered Care” likewise. The hospital and the community see function and risk through completely different sets of spectacles. And having your frail parent looked after by a 24/7 multidisciplinary home-care-of-frailty practice like ours doesn’t guarantee the outcome you want.
Who are the bad guys here? Not the home support supervisor (just doing her job), not the home care nurses (not paid or mandated to run risks), not the paramedics (would you leave a pale weak old man alone in his apartment when somebody had called for help?), not the receiving ER doctor (who can’t not admit somebody with Mr. Havel’s level of function apparently in crisis), not the hospital doctors (whose job it is to fix things and who have no idea where Mr. Havel is coming from functionally and philosophically), not the hospital unit coordinator (head of the “team” and responsible for doing the reasonable thing), and not me either, I hope (even though when I said so long to Mr. Havel eight weeks ago after describing my upcoming holiday in Prague and Budapest I had a sneaking feeling it could be the last time I saw him in his apartment). He said, “My God,Central Europe!” holding up his hands as if beseeching a blessing. “Eat some goose and sauerkraut for me.” I did.