How a culture of assumed power over decision-making is a danger to resident autonomy
Autonomy “Self-directing freedom and moral independence”
As healthcare professionals, we are held accountable for our decision making and with good reason. Our decisions can be fatal. They can also be life saving. Therefore being accountable to those we work for (our residents as well as our employer) is of the utmost importance.
I believe that this accountability is being pushed so far that a culture of risk avoidance is rife. My core belief to this post is that, as a profession, we are subconsciously assuming the right to make decisions on behalf of residents (with cognitive capacity), with the belief that we know what is best (safe) for them. I break this down into two core elements that are intertwined with each other in this setting:
- Quality of life
- Life longevity
This is the trade-off of enjoying day to day life versus the longevity of it. But why are these two elements are in conflict? The answer lies with risk.
In an elderly demographic, simple tasks can come with a risk bound to them. The everyday essential task of walking is a prime example. Lets say a resident requires the use of a walking aid due to reduced standing balance that makes them unsteady on their feet. For each time that they mobilize, lets estimate there is a 1% chance of falling. Sounds minuscule right? For every 100 occasions they walk, the probability tells us they will fall once. But if you think how many times you walk per day, you quickly realize the frequency of falling for this individual could be a weekly occurrence, with serious implications.
Once you compound this with the associated injuries (physical and psycho-social), alongside mortality statistics related to subsequent hip fractures, all of a sudden you have a dilemma on your hands. Does this mean we should stop this individual from walking by themselves completely to limit the risks we have identified?
Longevity of life would say yes.
Quality of life would say no.
Imagine the frustration if you were bound to your chair or your bed until a carer could come to your aid. You are left waiting to complete menial tasks, such as visiting the bathroom or picking objects up off the floor. Repeat this cycle over hours, days, weeks, and months. Would you feel content and empowered in yourself? It is easy to take safe decisions that are risk averse when you do not incur the sacrifice yourself. You don’t have to bear the psychological trauma of losing your autonomy and independence.
This is but one example. Another such point would be the texture of food that residents are provided with based on safely being able to consume it without risk of choking. There is no black or white answer however. Many shades of grey lie in between. So is it possible to evenly weigh the scales to balance patient safety with independence and autonomy?
In the modern era of medico-legal red tape, I would argue the scales are imbalanced. Longevity of life appears to be accepted as the only gold standard for measuring quality in the aged care industry. All else falls a poor second. Aspects of care are fine-tuned to minimize risk at the cost of patient happiness and fulfillment. There are multiple external pressures which are the cause of this prioritization:
- The financial and reputable implications of legal action.
In today's world no accident seems to be allowed to deemed as such. There must be someone who is to blame. The culture of legal action against medical practitioners and facilities is so rife that facility owners are pressured into creating a culture of risk avoidance, that in turn creates an institutionalized feeling for residents. As much as this is a monetary issue, it is equally about reputation for facilities.
2. Narrow minded outcome measures
Residential aged care facilities are accredited by care quality commission bodies to uphold standards of care for the safeguarding of their residents. An appropriate and necessary measure. But the weighting that is applied to mortality and interventions that can reduce mortality rates is so much that it clouds over other important facets. Those such as quality of life, autonomy, and the right to choose how you die. Although these topics are covered by government inspections, there is not the same emphasis based on the results as with that which surrounds mortality.
3. The piling pressure of paperwork
Due to the combination of the above two points, it is often the priority of facilities and their employees to cover themselves legally with excessive paperwork- a consequence of the blame culture which is endemic of modern society. To combat this, an ever increasing mountain of paperwork is required to record and redistribute any risk associated with activities of daily living. This is yet a further stress on employee time- an already precious commodity. Again this reinforces that risk avoidance and a mental restraint of residents is the easiest and most effective way to achieve safety, however ethically or morally wrong.
This is not to say that the culture of assumed power is deliberate or conscious in its restrictiveness. Quite the opposite. It is a combination of the cocktail of factors above that creates a perception that absolute safety is always paramount. Processes begin to change, resulting in the decision-making process being removed from the resident and passed into the hands of immediate family and care staff. This assumption is often seen at its most powerful with immediate family members. Love of a loved one combined with the fear of losing them. The result, a perceived power of attorney, is viewed by the family as the right thing to do- “we know what’s best for you”. But a family members’ wish to keep their loved ones safe and well, no matter the consequence to quality of life, can come in direct contradiction with the wishes of the resident.
So how can we alter this culture? How can we empower those living in aged care facilities to choose the path that allows them to prioritize the things most dear to them?
The road to achieving this is long, but possible. I hope we can move towards a model where residents are well-informed by health professionals providing unbiased opinions and options, allowing the final decision to lie with the resident. That is autonomy. I believe this can only be achieved by a top down cultural shift. Until employees on the ground level feel the confidence to transfer decision-making to residents, without fear of consequences, then change will not happen. This has to come from employers, and above them from governing bodies in combination with the legal system. But if the voices of reason can echo from the bottom up, maybe they will be heard and listened to.
