As caregivers we should respect the people in our care. We must recognize them as unique individuals, with their own personal preferences and choices. What does this entail? Many things, but an often overlooked aspect of the caregiving relationship is the principle of giving the person in our care the dignity of risk.
For the phrase “dignity of risk” I am indebted to Rev. Dr. Cynthia Huling Hummel, whom I heard speak in November of 2016 at an Alzheimer’s Association conference. At that time she was a National Early-Stage Adviser for the Alzheimer’s Association, and she spoke as someone who was personally experiencing the effects of early-onset Alzheimer’s. The idea behind the term “dignity of risk” is one I had grasped years earlier in the course of my own caregiving journey, but I had not found such an articulate expression as Dr. Huling Hummel gave. As someone entering into the care receiving end of the dynamic she offered special insight into what is important for caregivers to remember–and reaffirmed for me what I had observed myself.
The dignity of risk is closely related to the dignity of choice, but they are distinct. In discussing the role of caregivers it is common for educators to explore the importance of giving those in need of care the dignity of choice. Examples often given are allowing the person to pick out their own clothes or what they want to eat at a meal. What I have not seen discussed prior to Dr. Huling Hummel’s presentation is the equally important act of giving those in need of care the dignity of risk. Granted, a big part of the reason why this is not discussed is because it is a thorny issue. It is not difficult to say that we should give those who are receiving care the right to make a choice about what clothes they will wear or what food they will eat–these are choices with no meaningful negative impact for anyone regardless of what choice is made. But to talk about granting the people who receive care the right to choose something that entails risk–that principle in effect opens Pandora’s Box. As a result, the reality exists but it is not properly discussed.
The problem is two-fold. In today’s litigious society the failure to eliminate any and all risk is seen as an invitation for a lawsuit, so institutional policy is predominately geared toward the idea of “elimination of risk.” Even if we put aside the issue of litigation there is the vexing question of what is acceptable risk. We should not allow the mentally incompetent the “dignity of risk” in playing with matches–but an awful lot of life is not so clear-cut. Determining the moment when a frail person must give up driving is an explosive issue precisely because risk and dignity are so intertwined and the situation is rarely so black-and-white as we would like. My purpose here is not to provide neat answers to the problems of our litigious society or the complexities of caregiving, but I would like this article to be a clarion call for the issue to be recognized and brought forward for thought and discussion. I believe it is crucial that the topic of the dignity of risk become as commonly discussed as the issue of the dignity of choice. Hiding from thorny issues does not bring about solutions–wrestling through the difficulties is the only way to make progress.
The dignity of risk is foundational to a person both feeling respected and experiencing a well-rounded and rich life. We don’t allow a small child the same freedom of risk as a teen, and we don’t allow a teen the same freedom of risk as an adult–but for every person in each stage of life we recognize that some element of risk is required for them to fully experience and enjoy life. For a very young child that might be the risk of falling as they learn to walk; for a teen it would be the risk inherent in driving as they learn that new skill. We engage in some measure of risk when we drive a car, play sports, climb mountains, or go sailing. No matter where you are in life, the truth is that enjoying living to its fullest requires the presence of risk. If you encase someone in bubble wrap and keep them in a padded corner that person is surely not experiencing or enjoying life. This is still true when someone becomes ill and needs care. Rather than going on some futile quest to attempt the elimination of all risk from life it is far better to recognize what kind of risk is a necessary part of that person being fully present in life.
In my view, this principle of the dignity of risk can be most clearly understood and applied when caring for someone who retains all of their mental abilities. A person who is ill with cancer, heart disease, or any other sickness has the right to make their own choices about their care and their life choices–regardless of whether we as a caregiver think their decisions are the best choice. Their choices about how they will live in the face of their illness is a dignity and a right. In the end we all live and die based on the accumulation of our risky choices both distant and recent–from the small act of eating unhealthy food to the somewhat bigger act of skydiving.
This right to make choices of risk about oneself can seem like an obvious principle, but it is surprising how often it is violated. I have known two people in nursing homes who retained all of the mental abilities and yet were mandated to drink thickened liquids because they had swallowing issues and there was a danger they might choke and aspirate unthickened liquids. The safety issue was real, but both people despised the thickened drinks and desperately wanted to drink normal water. One of them went so far as to maneuver their wheelchair into a small bathroom so they could get water from the faucet. This was considered impermissible by the facility policy–and I found the policy an appalling violation of the personal right to the dignity of risk. In both cases the person in question was of sound mind–they were simply frail enough that outside forces felt it their prerogative to impose a particular choice contrary to the wishes of the individuals receiving care. Those two people who were a part of my life are not alone in being deprived of their right to the dignity of risk.
The issue goes beyond institutional policies. When we are caregivers and personally have someone in our care who is making what we feel is a poor choice, we face a strong temptation to overrule their right to that risky decision. As a caregiver I faced that conflict many times. But as caregivers we need to give our opinions when appropriate and then allow the person in need of care the dignity of the risk of their own choices. This is not an easy thing to do, but it is very important.
The situation is much less clear when dealing with someone who live with a mental impairment. People in that situation should still be allowed the appropriate expression of the dignity of risk, but what level of ability and responsibility a person has at a particular stage in their mental impairment is not always easily determined. The simple solution of depriving a mentally impaired person of all right to the dignity of risk is just as wrong as it is simple. Children at differing ages are not all allowed the same freedom of risk because they have differing levels of mental ability and responsibility. As parents and teachers we adjust what risky choices we allow children as they grow. The same principle ought to work when caring for a person dealing with a mentally incapacitating disease. Having dementia or some other mental impairment should not immediately strip a person of any right to live a life involving elements of risk by choice.
For anyone caring for the mentally impaired this reality is implicitly lived with on some level because you can’t remove all risk from the life of someone in your care–it simply isn’t possible. But often the handling of the issue is very haphazard and exceedingly (and unnecessarily) stressful because the issue is not explicitly recognized and discussed. This leaves the caregiver to try to remove elements of risk that they need not–and should not–remove. Far better care can be provided if the caregiver recognizes both the extent and the limits of the dignity of risk that should be granted to the person in their care. This is never an easy thing to sort out and often it is not as clear as we would like–but if this difficult path is thoughtfully navigated we can allow the people in our care to have a richer and more respected life.
Regardless of the nature of a person’s need for care they should be given respect, which is expressed in the dignity of choice and the dignity of risk. Understanding how this is implemented requires open communication between all parties involved and the skills of critical thinking and dynamic problem solving. It is not an easy process to work through–but then the best caregiving is never the easiest caregiving. The best should still be our goal.