Here’s a fictitious story of a problem with home support. Mrs. Forsyth age 92, mildly memory-impaired, under treatment for heart failure and dependent for mobility on a walker because of arthritis, was in the hospital three months ago because of an injury, and still remembers her disbelief at how hard it was to get back home. She hated the bewilderment, fear, and loss of control she felt as strange things, like being taken and put inside a machine or doctors she had never seen before visiting every day without explanation or apparent connection with anything she could understand, kept happening. She swore, told her doctor and family, and quite firmly believed and clearly understood that she literally would rather die than be admitted back into the hospital.
Mrs. Forsyth is able to maintain herself independently because twice a day home support workers come in and help her with a variety of things.
Now let’s understand that effective, desired, humane, reasonable care of frail elderly people in their homes only works using what we call in the business ADL support. This includes everything that we do for a partly-disabled old person to help her with the things she can’t do for herself. Shopping, cleaning, preparing food, laundry, medication management, even dressing, getting around her home, using a toilet, and taking a bath.
Sometimes this support is done by an adult daughter, a husband or wife, a neighbour, anybody willing takes on various tasks, and things proceed. But often and inevitably some of this work falls to paid people we call home support workers. They may work on their own, be part of a small group, or work for a large company. Home support workers take training in the necessary skills of their jobs, but they are typically not health professionals, or at least not health professionals licensed to practice where they work.
But sometimes this arrangement collides as it were with the usual events in the life of somebody elderly and frail like Mrs. Forsyth. Those include unpredictable crisis that could show up as sudden deterioration of an old person’s already-dicey daily living ability, or could look like a more obvious health problem: somebody heading for the bathroom who falls and can’t get up, wakes up short of breath, or is suddenly confused. Often it is the agency-contracted corporate-employed well-known and trusted home support worker who first discovers something is wrong.
In our situation, and this is common pretty well everywhere, the home support worker follows her employer’s guidelines and calls her supervisor at the office. That supervisor may be a nurse and may have access to some information about the elderly client in trouble, but she is also quite properly governed by guidelines set up by her employer who must do things that both assure client safety, and also that would be seen in retrospect to assure that safety. It would be rare for the information available to the supervisor to include advance directives or preferences that come from the elderly client.
And on one particular morning Mrs. Forsyth tells her home support worker who has just come in the door that she has a cough and feels a heavy tightness in her chest.
The home support worker has no choice, she calls her supervisor. Chest pain? The supervisor has no choice either. Call an ambulance. Home support worker following instructions dials 911, and six minutes later five uniformed people off a fire truck and two ambulances are in Mrs. Forsyth’s bedroom, recording electrocardiogram, sticking an intravenous line in her arm, and talking into crackling microphones while red lights project on the wall above the bed through a window from vehicles outside.
“We’re just going to zip you over to the General and get you checked out okay dear?”
“But I don’t want to go anywhere I want to stay here.”
“We understand, but we’ve been in touch with the doctor and that’s his advice. Once you’ve had an x-ray and some blood tests you’ll be back here in no time.”
Mrs. Forsyth consents, not realizing that “the doctor” is the ER physician, not her family doc. Once in emergency she is sedated, admitted from there to a medical ward, and develops over the next several days diarrhea and deepening confusion, is further medicated, relives her former hospital nightmare, and then dies.
She didn’t want to go to the hospital. Quite possibly she would’ve died of her pneumonia or heart attack had she stayed at home, but the home-care doctor and his team of nurses who have her documented advance directives and would have seen her that day and treated any infection and pain were never called. In fairness, the home support supervisor had no idea that service was even available for Mrs. Forsyth, and it is generally understood that calling a family physician for an urgent problem results in the advice to go to the emergency room anyway.
This, for a program like ours that is trying to keep frail elderly people who don’t want to be there out of the hospital, is a big problem. But I think we may be finding our way to some happier endings.
Stay tuned for the next episode.