Care at Home, Again.

October 2021.

It’s been awhile since I’ve posted and for me lots has changed. I’m now 2½ years into part-time practice in a much more rural setting (BCs Sunshine Coast) than where I was for the rest of my life in the city of Vancouver. I’ve come to worry even more than I did before about the promises we – physicians in particular but the healthcare system in general – make to older people and their families. Somehow in the city I could tell myself that these promises had at least a hope of being kept. Here in a semi-rural setting that’s way more difficult.

Whereas in Vancouver (population of about 650,000, 12% over 65) relatively big sophisticated administration, hospitals, nursing homes, home support, and even a care-of-frailty team, access to benefits seemed at least potentially real. Here (population 30,000, 30% over 65) resources are stretched thin. If you’re in trouble at night or on the weekend you call an ambulance and go to the hospital, simple as that. If you are a frail older person and need more care at home than the threadbare resources can provide, you are pretty much facing the same solution.

Families of patients living in the community often tell me, “We want to keep her here but we know soon she will have to go into a home.” Somehow it falls to me because nobody has mentioned to them that the three residential care facilities available here are completely full with long waiting lists. The “emergency” placement list from home now produces a bed in residential care in about eight months. That’s the emergency list! The result is that the small hospital is jammed with sad frail elderly folk in their 80s and older who don’t need hospital care, just heavier custodial care than they can get at home. So while they wait they occupy beds much needed for the kinds of things a hospital like ours is good at: appendicitis, heart attack, car accident, serious infection. And the homey comfy familiar custodial care home families envision and the system seems to promise in many cases never materializes. The elderly person sometimes dies first.

Trying to figure out what has caused the falsehood of that expectation, I think it’s a team effort. Frontline case managers and homecare nurses bless their hearts just keep quiet. The best tell the truth when asked and do whatever is needed to keep people at home as long as possible. Others press for acute hospital admission as though solving their problem doesn’t create a worse one downstream. Doctors I’m afraid just play busy and overworked and continue with office (virtual office these days of course) traffic and dealing with acute critical care problems as best they can.

I was shocked a couple of years ago when I attended a “transparency” breakfast meeting with then chief financial person for the region. The shock was his statement that about 98% of the $3.8 billion regional budget was simply locked: committed to maintaining facilities and contracts and defraying the part of health costs the region was responsible for. Any more money for care in the community simply wasn’t available. The money is already spent so whatever it might cost to build more residential care beds, expand the hospital, properly populate home care and home support, etc. as things stand now doesn’t exist and never will.

Of course on top of this funding shortfall we have the persisting and weirdly politically divisive pandemic. Many nurses and other healthcare workers are leaving their professional jobs because of stress, and now many (especially home support workers) who decline vaccination no longer qualify to be in the public system. I’m told funded homecare nursing positions in Vancouver are at the moment only 50% subscribed. So because of the pandemic even providing more community money won’t immediately help, and where that money would come from – possibly acute care services – there isn’t anything to spare with critical care facilities like ICU themselves under threat.

What’s the fix? I don’t pretend to know. But as I’ve said many times before, seat-of-the-pants logic suggests to me that if part of the problem is custodial care of frail elderly people being reinterpreted as though those people were textbook middle-aged patients and the hard backstop for inadequate homecare is to occupy acute hospital beds, it would help if we doctors thought seriously about a couple of changes (already modestly underway) to the way we do business.

One, recognize frailty as the last stage of life and understand that most people in it do not want – and can’t benefit from – what we routinely give them: more rescue (ambulance, ER, critical care, specialist referral, operating room) and more prevention (drugs, period). Given the choice they overwhelmingly prefer care focused on comfort, including the psychological comfort of staying at home, and being able to do things they enjoy as long as possible. This change starts with what’s referred to today as a “difficult conversation” where we ask frail people and their families what they want most and what they are afraid of.

Two, if what someone wants is to be comfortable and looked after at home we need to stop pretending they can have that unless we are willing to respond to their problems at all times in the home along with needed adequate nursing, rehabilitation, and personal support. The unavailable family doctor (except somebody on duty in an emergency room) will not prevent the first step in the rescue cascade. And showing up promptly when someone or their family calls that they are in crisis (sudden confusion, breathlessness, injury, new pain, whatever it may be) late at night or on the weekend is the only thing that will convince people that we care and can take needed action. I call that conviction the beginning of a relationship of trust, and that’s what keeps frail people out of the hospital.

Frail patients and their families know that time may be short and the burden of care is real. Often what they really need is somebody they trust to tell them that their experience at the end of life is okay. There’s no need for and no benefit from a TV-show scene in hospital. But that kind of reassurance is believable only if it’s given directly and in person, and supported by a real and prompt response at the time people most need it.

Please stay tuned. In a week or two I will try to bring my many readers up-to-date on success or failure so far of my attempt to get that kind of care going here on the Sunshine Coast.

About John Sloan

John Sloan is a senior academic physician in the Department of Family Practice at the University of British Columbia, and has spent most of his 40 years' practice caring for the frail elderly in Vancouver. He is the author of "A Bitter Pill: How the Medical System is Failing the Elderly", published in 2009 by Greystone Books. His innovative primary care practice for the frail elderly has been adopted by Vancouver Coastal Health and is expanding. Dr. Sloan lectures throughout North America on care of the elderly.
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