When a loved one is admitted to hospital, family caregivers want to offer comfort and support at the bedside. But in order to perform our healing role, we need to be recognized as key members of the hospital treatment team.
We’re keepers of our loved one’s medical history and we’re experts in their experience of illness, as well as in their personal tastes and preferences. We represent the whole, well person to medical professionals who may only see an ill patient.
Natural caregivers perform a vital role in hospital and as care managers in the transition to home after discharge. Just because family care is borne of love and is unpaid, it shouldn’t be seen or represented by health-care bodies as arbitrary and outside the patient treatment plan.
Family caregivers are an essential conduit between the patient and all hospital professionals. And we perform a good deal of personal care. We’re the purveyors of comfort and we’re personal valets. We deliver glasses of ice water, extra blankets and lots of gentle hugs.
The problem is that hospital administrators and clinical staff don’t often admit freely to the vital role that families play as partners in care. In fact, the messaging on hospital websites invites the public to believe families simply provide an antidote to the stress of acute illness and being away from home.
Here’s what one adult hospital wrote about visitors on its website: “We encourage you to visit your loved one at any time because we know that having family and friends nearby helps reduce anxiety and isolation.”
Even though nurses rely on families to provide assistance to patients, especially for frail seniors and people with disabilities or chronic illness, hospitals still charge anywhere between $14 and $25 per day for visitor parking – a cost that galls family members working at their loved one’s bedside all day, every day.
Dr. Samir Sinha, director of geriatrics at Mount Sinai Hospital in Toronto and expert lead of Ontario’s Seniors Strategy, is a passionate champion of seniors and their families as partners in care.
“Family caregivers are essential ‘must-haves’ for frail elders who find themselves either hospitalized or in an emergency department,” he reflects. “The absence of a family member to provide context about the patient can sometimes lead to misperceptions that encourage premature institutionalization or the risk of a poorly planned discharge home.”
At children’s hospitals, parents are encouraged to take part in their child’s care. This is the way one major pediatric hospital phrases the parental role on its website: “Parents are encouraged to take part in their child’s care. You may stay overnight and sleep on the sofa in your child’s room for the duration of their stay.”
The message is that parents are more than welcome to move in with their sick child. That shows just how central parents are in their child’s care while in hospital. The reality of pediatric care today is that nurses, doctors and therapists perform assessments and procedures, but it’s parents who soothe, monitor, distract and report on their child to staff, all day, every day.
Assistance with nearly all activities of daily living is up to families. This is particularly true for young children, and patients with disabilities or chronic impairments of any kind. Today’s wards are staffed based on caring for a sick but otherwise self-sufficient patient population. The reality is that the more dependent the patient, the more he or she needs a family caregiver in the hospital.
None of this is the fault of our country’s highly-trained and compassionate medical professionals. It’s simply an uncomfortable stage in the evolution of Canadian health care – caught between the old model of paternalistic systems and the contemporary reality of a population that’s living longer, but with more illness and earlier hospital discharges – all with families as the backstop.
Inviting family members to contribute to hospital charts, providing us with comfortable in-hospital accommodation including access to kitchen and shower facilities, and free hospital parking when our loved ones are patients are just a few ways hospitals can support the critical role of families in patients’ circle of care.
Donna Thomson is a caregiver, author and activist. She wrote The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (2014) and blogs at The Caregivers’ Living Room (www.donnathomson.com). She is a board director of the Kids Brain Health Network and advises from a family perspective on numerous health research projects. She also teaches families how to advocate for care at The Advocacy School and The Caregiver Network. She writes Caring Connections with Vickie Cammack.
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