Unambiguous Clarity

Caregivers as the backbone of the healthcare system 

Through COVID 19 glasses, the invisible glue holding our fragile health care system together became unambiguously clear. I’m talking about the informal care teams, disguised as ‘family’ and ‘caregivers’. Their contributions have been unsung and sometimes even seen as obtrusive until now.  Shame on us for needing a global pandemic to see their true value.  

 

At home, in hospital, in long-term care settings, family caregivers are hard at work.  They fill the gaps between the visits and support from the busy paid personnel; PSWs, nurses, doctors, occupational and physical therapists.  Not only do their charities provide respite for the formal care team, but they also translate the standard, ‘cookie-cutter’ care approach into something that works for that specific person.  The stuff that improves the person’s experience of the illness, while the biology of the illness is being tended to by the healthcare professionals on the team.  

 

Through the pandemic, the ‘family’ was taken out of the care equation in many care settings. In no uncertain terms, this meant their family members were in worse health, and in some cases, even died.  When family members were no longer able to be at the bedside, their loved ones visibly deteriorated.  Little mouth care, repositioning, hydration, food, toileting and personal hygiene.  Many died of neglect. Others suffered from isolation, loneliness and demoralization.  There was essentially an abrupt mass ‘layoff’ of caregivers  - which was very difficult because  they could no longer monitor the pulse of care while it flatlined in their absence.  

 

Family caregivers who care for family living at home or in the community had the opposite crisis.  Those who were caring for loved ones at home, suddenly found themselves functioning alone, having to take on the roles for the entire team. Doctors, nurses, PSWs were not available to help people at home  - often called the ‘poor cousin of health care settings’ - leaving an already tenuous situation even more depleted of trained health care providers.  Family carers were abandoned and shouldered the care with no added training, no respite and no reinforcement. 

 

In all the media coverage of COVID, the troubled community care setting received no spotlight.  With no ‘bricks and mortar’ to define the boundaries of this health care setting, it’s often overlooked. Yet, it is arguably the most important of all care settings. 

 

Think about it – the consequences of the instability of community care are felt in all other care settings.  The irony is that the problems in the ER, long hospital stays, inability to discharge people home and long wait-times for nursing homes actually require investment and improvement in the care available and provided in the community.  The community setting is healthcare’s ‘canary in the coal mine’.  

 

Patients and families found themselves ‘on their own’ through the healthcare journey, ‘a boat without an oar, a ship without an anchor…no paddle’.  Doctors pivoted to virtual care, no one in office, without any consideration of making home visits.  Doctors and nurses were re-deployed to COVID centers; patients and families had to learn to cope.  If there is any silver lining, it’s that the work of our family caregivers can no longer be ignored or dismissed, and quite frankly, our health care system might finally recognize their contributions.  

 

Going forward, family caregivers should be integrated in a more purposeful way as our partners - not just co-designing at planning tables, but in the trenches of care. They are an integral part of our workforce in healthcare. They need to be leveraged across all care settings and deserve more than just acknowledgement and thanks.  They need training, respite and support -  practical, emotional and financial.  They deserve information about the illness journey, what to expect, an understanding of how things will change, support in knowing what to do and how to be prepared.  The health care system must re-examine how to reinforce its invisible skeletal staff.  

 

There are more family caregivers that make up the healthcare workforce than paid health-care providers.  If we recognize this, and mobilized this group with the proper supports, we could repair some of the hemorrhaging in healthcare.  But we better start now.