When a loved one is admitted to hospital, family caregivers want to offer comfort and support at the bedside. We are 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. But in order to perform our healing role, we need to be recognized as key members of the hospital treatment team. 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 care is a key part of hospital care, so let’s start talking about it that way.
Family caregivers perform the role of essential conduit between patient and all hospital professionals. Not only that, we perform a good deal of personal care. We are the purveyors of comfort and we are personal valets. We deliver glasses of ice water, extra blankets and lots of gentle hugs. The problem is that hospital administrators and clinical staff do not often admit freely to the vital role that families play as in-patient partners in care. In fact the messaging on hospital websites invites the public to believe that 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 Mt. 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. He reflects, “Family caregivers are essential ‘must-haves’ for frail elders who find themselves either hospitalized or in an emergency department. The absence of a family member to provide context about the patient can sometimes lead to misperceptions that encourage premature instutionalization or the risk of a poorly planned discharge home.”
In the case of 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 the 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 implicit message to parents is that they are more than welcome to move in with their sick child. That messaging belies just how central a role the parents will play 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 and 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 healthcare – caught somewhere between the old model of paternalistic systems and the contemporary reality of a population that is 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 inpatients would be just a few ways that hospitals can support the critical role of families in the patient’s circle of care.