Associate Professor Marilyn MacDonald joins me on the “balcony of personal reflection.” We are humbled and amazed by the responsibilities that clients and families take on to assist a family member to heal, to manage a chronic illness, or to provide the support necessary for a peaceful death.

The Ghost of Healthcare Hope emerges...

“ I am encouraged by all the home care improvement conversations that are taking place across the country. The release of the Safety at Home: A Pan-Canadian Home Care Study and its recommendations provides a rallying cry for new conversations and the creation of a new narrative about home care. It is the first of its kind to examine adverse events in the home and include recommendations on how to make care safer.

Home care clients and providers may have different perceptions of the risks associated with being cared for at home. Disparity can often exist between the client/family caregivers’ and the professional caregivers’ understanding and acceptance of what is safe. The challenge is achieving an informed understanding.”

Despite all that we do as care providers, researchers, toolkit designers, et cetera, we believe our greatest source of hope for home care and for safety in home care belongs to home care recipients. We have used HOPE as an acronym to attempt to describe for you how home care recipients come to wear the mantle of home care safety.

We begin with the adjective Handy because home care clients and their families are highly adept at devising ways to get the job done without the plethora of equipment and resources available in the institutional setting. We recall a story about a woman with advanced osteoarthritis who was having difficulty getting out of bed. She and her neighbours devised a pulley system that she used with success until her death. Families frequently convert their dining and living rooms to spaces that allow them to care for someone because these rooms are usually a bit larger than bedrooms, or because they are on a main level, making access and transport easier for all those involved. As one piece of equipment after another is moved into their homes, families adapt, find space, and do their best to keep the place looking like a home. In institutions we have utility rooms for the storage of supplies and equipment. Individual homes and apartments were not constructed as care spaces, yet clients and family members find a way to store not only what they themselves require, but what home care providers require when they come in for home visits.

Our expectations of home care clients and their families are virtually limitless, and they are nothing but Obliging. Clients and family members learn to manage medications, prepare and give injections, perform catheterizations, change dressings, manage colostomies and urostomies, care for central venous access lines, and assist with dialysis, bathing, ambulating, exercising, feeding, shaving, and bowel routines. This list is incomplete, however it provides a glimpse into how extensive the care provided by families can be.. Many family members gradually take on responsibility for someone without realizing the trajectory of the illness and how the care requirements will increase. Although many families are eligible for assistance with the care they provide, and they do have a set number of hours of help per week, they remain responsible 24/7. This is completely unlike institutional care, where providers have a work schedule with designated time off and are paid. Families often muse out loud that they find themselves doing work that it takes an entire team to perform in an institutional setting, while the home setting is like the Wild West where you just have to make do and get it done.

It follows naturally, that pursuant to being both handy and obliging, home care clients and their family members are Persistent. This persistence manifests itself in many ways: clients and families will soldier forward when faced with dilemmas like missing medications, trying to get therapy and equipment, negotiating for in-home help, getting to appointments, navigating through systems and processes and generally working as hard as they can so that the client can remain at home. In the case of missing medications, the client or family member may have to make myriad phone calls before getting what they require, including calls to one or multiple physicians’ offices, a pharmacy, the home care agency, and perhaps social services if finances are a problem. Clients with debilitating conditions often need specialized equipment and therapy to maintain or to improve physical functioning. Once they are home, this may necessitate numerous calls and assessments as well as weeks or months of delay in their recovery while they wait. Although home care clients and families can often benefit from in home assistance, it is important to them that they be able to establish a trusting relationship with one or two individuals. Home care agencies often send numerous providers to a single household, requiring families to repeatedly request a limit in the number of different people entering their homes. Finally, we are always struck by the persistence with which home care clients and families strive to get to healthcare appointments. It is our hope that providers appreciate this struggle and make the time spent with these individuals as meaningful as possible.

Engagement means “commitment.” Yes, we know we advocate for engaged patients, however, we find that while home care clients and families may not always be engaged in ways that providers believe they should be, they are highly engaged in the best way they know how to make the home care experience work. These clients and families do the best they can in the circumstances in which they find themselves. Clients with minimal to complex home care requirements and their families make dozens of decisions on a day-to-day basis related to medications, treatments, and activities that we never know about. They live their diseases and treatments in ways we as providers cannot understand.

In 2011, publicly-funded home care was delivered to 1.4 million Canadians by five million caregivers. Eighty percent (80%) of the care needed by those individuals was provided by family caregivers. This group of Canadian clients and caregivers, most of whom are over the age of 65 (Canadian Home Care Association, 2013), are providing an enormous boost to the healthcare system. Imagine if tomorrow the caregivers of Canada billed the healthcare system for care delivered?

The Ghost of Healthcare Hope returns...

“ I hope...a new picture is created, influenced by: client and family perspectives, one size does not fit all, reframing of what value and quality means to the client and family, a shift in power balance that provides opportunity for choice and taking control.”

Home care clients and their caregivers are a shining example of HOPE. The volume of unpaid work carried out in home care far exceeds the adjectives Handy, Obliging, Persistent, and Engaged, employed to illustrate HOPE. I believe it is a testament to Canadian fortitude which should be celebrated and from which we must draw our resolve to provide support in ways we have yet to imagine.

My guest next week is Louise Simard in a conversation about the social determinants of health and what we need to do.

See essays in this series.

See essays from series 2

See essays from series 1

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