Rhetoric vs Reality: The Real Role of Families in Hospital Care

If you've ever gone to the Emergency Room with someone you love who has mobility or cognitive impairments, you know that hospitals are very unsafe places for vulnerable people.  Unless your loved one needs life-saving care such as in the Intensive Care Unit, you know that family caregivers are essential conduits between patient and professionals.  Not only that, but we perform a good deal of personal care to boot.  The problem is, the clinic and administrative hierarchy of hospital professionals don't admit to the critical role that families play.  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.  Even though family caregivers of frail seniors, cognitively impaired adults or children with disabilities ensure the safety and often the physical comforts of their loved ones, hospitals still charge anywhere between $14 and $25 per day for 'visitor' parking.

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 and improves healing and recovery for our patients. 

In the case of Children's Hospitals, parents are encouraged to 'take part' in their child's care.  This is the way one major 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. Each in-patient floor has a family room for you and other family members to use while visiting your child. The rooms have a kitchenette, appliances, and lounge chairs.

The implicit message to parents is that they are more than welcome to move in with their sick child. But what is not explicit is how central a role the parents will play in their child's care while in hospital. The reality of hospital care today is that nurses, doctors and therapists perform assessments and procedures from time to time, but they cannot attend to the patient all day, every day. Assistance with nearly all activities of daily living is up to families and this is particularly true for patients with disabilities or chronic impairments of any kind. Today's wards are staffed based on caring for a sick, but otherwise independent patient population.  But the reality is that the more dependent the patient, the more he or she needs a family caregiver in the hospital.  

And the centrality of the family caregiver role in hospital increases with the complexity of the chronic care patient's needs.  The Alzheimer's patient who also has diabetes along with challenging behaviour cannot be managed on a regular ward without a vigilant son or daughter by the bedside to help keep things under control. Nurses and doctors who trust the knowledge and capacities of 'frequent flyer' parents of medically complex children expect those parents to give their child 24 hour skilled care while in hospital. Some parents describe 'family centred care' as 'parents, do it yourself care'.  

None of this is the fault of the highly trained and compassionate staff in hospitals.  It's simply an uncomfortable stage in the evolution of contemporary healthcare - caught somewhere between the old model of paternalistic medicine and the contemporary reality of cutbacks, sicker people and an aging population. 

Family caregivers WANT to help look after their loved ones. But we need to be recognized as essential components of the treatment team and we need the ability to set limits on the number of hours we put in at the bedside. Just because family care is borne of love and is unpaid, it shouldn't be deemed arbitrary, frivolous or a luxury.  Family care is essential in hospitals, so let's start talking about it that way.

UPDATE NEWS FLASH: One day after I published this, a news article appeared in Ontario, Canada, announcing that the Minister of Health had mandated half price parking passes for 5, 10 or 30 days. Passes can be transferrable between patient and caregiver. Apparently the cost of one-day passes will remain the same. http://news.nationalpost.com/news/canada/ontario-hospitals-will-have-to-offer-discount-parking-passes-health-minister-says.  One tiny step to support the essential role of family caregivers in hospitals.