Monday, 8 July 2019


Imagine a newborn baby in a hospital emergency room. Or a loved one who is elderly, frail and in pain. ERs are very unsafe places for vulnerable patients. The frail elderly, the very young and all the very sick people in between need the support and protection of a family member in the hospital. We are the essential conduits between patient and health care professionals. We cocoon our loved ones from the germs of others' illnesses in the hospital the best we can. And we do this while giving personal care. We divert our loved ones' attention away from their pain and suffering. We ensure that their preferences are expressed in the positioning of the waste basket and the blankets. And we wonder in solidarity with them about what will happen next. 

Image result for tired family caregiver in 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'.  
Frequently, patients are discharged home with new devices or complex treatment plans. Families must step up and learn nursing skills at a time that is acutely stressful. Already exhausted, family members must take on new information and new responsibilities on discharge, often with very little support. 
Image result for complex care children in hospital family
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.


Joni Bradford said...

I agree that family caregivers should be viewed as essential in a hospital environment. In fact I believe that just plain family members who care are essential. A hospital can seem to be a cold and lonely place for many. Just having loved ones involved can be a big help in recovery.

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