Tuesday, September 21, 2010

a new kind of vulnerable

I was having a conversation with a family the other day who were expressing the reality that their ability to financially support the care of their aging parent was fast approaching an end; they were terrified, anxious and burdened by a sense of deep failure. They had already wrestled and fought their way through an earlier and equally difficult predicament - the realization that they could no longer emotionally and physically support their parent at home - the health care needs and the physical toll of caring were simply too much, even with significant formal and informal daily and hourly support. It was a decision in many ways that was long overdue ( at least from the vantage point of the onlooker); the family was exhausted the client was frail. They took solace in the fact that at least at the time of this decision, they were financially in a position to afford private facility care, while they waited for a subsidized bed. The move was immediate, mom settled in well and the family regained a sense of emotional and physical equilibrium. Everyone's need were taken care of; it was looked at as one of those win-win situations.

What no one anticipated though was the devastating impact of a simple change in wait-listing policy. When mum was in the community it was a crisis; her care needs exceeded the capacity and availability of formal health care resources and had overwhelmed the family's capacity to carry the balance of care required. The only viable and realistic option was placement in a care facility; it was clear that her need for placement was considered 'urgent'. Who would have thought that the short term 'fix' the family was able to provide, in terms of paying privately for a facility bed while awaiting a subsidized bed, would have such a punishing outcome as a result of a policy change. Now that she is 'safe and sound' in a facility bed she is no longer considered in need of urgent placement - effectively she has landed on a snake (as in the game snakes and ladders) and has slipped way back in line for a subsidized bed - even though she has been waiting for over a year. The only way she gets to the top of the wait-list, the only condition upon which she would qualify as 'urgently in need of a subsidized bed' is if she and her family were no longer able to pay privately for care; in essence, she and her family have to be flat broke with no other options before the 'system' reconsiders her level of need. Its not that a bed magically appears when this happens - the stars are not so easily aligned - its just that now she fits the criteria for being urgently wait-listed. What happens in the mean time (while the wait is still on for a subsidized bed to become available) is that the she and the family are presented with a few options, of which they are left to decide on the lesser of two evils: one, she can return to the community and be cared for by a collective of informal and formal supports (which was already tried and clearly was insufficient for the level of care required); or two, be admitted to hospital and await placement from there (an undignified, extremely disruptive option for the client, to say nothing of a flagrant misuse of an already overtaxed resource). Simply put the demand for subsidized extended care facility beds significantly outweighs the supply - the 'system' says their hands are tied, there is no money, there are no options - well, no good options anyway.

This is a new and emerging kind of vulnerability - one that explodes from the fragility and precarious nature of an increasingly under-resourced system of care. The trickle down impact of policies written far away from the front lines of care devastates families and clinicians alike. Clinicians are forced into a position of somehow defending a broken system which has reneged on the most basic of promises: to provide continued access to quality health care without financial or other barriers and to protect, promote and restore the physical and mental well-being of residents of Canada. (FYI: these are the stated objectives of Canadian health care policy).

While the system seems okay with offering solutions that are known to be insufficient (returning a client to the community where their needs exceed the capacity of formal and informal resources) and / or are not in the best interest of the patient (ie, will do more harm than good), front-line clinicians do not have the same protected luxury. We are the ones who have to look into the weary and exasperated eyes of patients, their families and caregivers and tell them that the system can no longer guarantee or safeguard their well-being. Where does this leave us? The impact of these policies contravene the objectives of Canadian health care policy, and arguably also contradict the ethical standards of practice of many, if not all, of the professional health care disciplines.