Dignity of Risk

Dignity of risk is the right to make your own decisions when there is an identified risk involved in the situation. It refers to a person's self determination and autonomy to live their life the way that they choose even if an adverse outcome is possible or likely, and avoids excessive caution in order to eliminate the risk. The idea began with the Swedish doctor, Dr Bengt Nirje in the 1960's when he explained "to be allowed to be human means to be allowed to fail." The concept was first formally articulated in 1972 by Robert Peske, an American author, theologian and disability rights activist who expressed that "there can be crippling indignity in safety!" and in 1980, Julian Wolpert further explained that prioritising a person's safety over their right to make their own decisions is a limitation to personal freedom. The notion began in the context of people living with a mental or intellectual disability and how they were allowed to go about their daily life. However, over the years the idea has expanded to physical disability, aged care and health care.  

How do we identify the risks?

In care settings, a person's function and capacity is assessed in order to find the areas that a person needs support, or in a more acute setting, the areas that a person needs medical attention and/or rehabilitation. This can look like walking, dressing, showering, preparing a cup of tea and snack, eating and drinking or in a more clinical sense blood tests, procedures such as gastroscopes and flexible endoscopy evaluation of the swallow (FEES), and medical imaging such as CT, MRI, X-ray and videofluoroscopy (VFSS).  Sometimes, these tests reveal a risk that can lead to an adverse outcome such as a fall, choking event, burning or hurting oneself etc., and naturally, as health care professionals we try to fix the problem or reduce the risk. This runs in line with our duty of care, and in a hospital or care setting where the person's health and safety is a direct responsibility to staff and health care professionals, we tend to be very risk adverse. However, it is also part of both the risk assessment and duty of care to use clinical knowledge and experience to decide how impactful the risk truly is in order to support the person's decision making process.  After all, we never truly know the extent of the risk until the risk is taken. 

Duty of care

Duty of care is a person's obligation to ensure another person's safety and wellbeing. In this case, it refers to health care professionals and carers who are legally and ethically obliged to do so as part of their job. However, duty of care also means respecting a person's rights including their dignity of risk. This doesn't mean that we stop providing care or support, although it does means that our goals of care change. When a risk has been identified, there are often still ways to reduce the risk through strategies and equipment, even if we don't eliminate it. Education and training can also help to mitigate risk without avoiding it entirely. This is particularly important when a person is leaving care such as discharging from hospital or community services. Knowing that a patient may make decisions that could lead to adverse outcomes once they are at home and in the community, and not under the supervision of healthcare professionals or carers, all efforts should be made to ensure that the person is adequately prepared to deal with potential negative consequences from both a safety and an ethical perspective. 

Informed decision making

When a person is required to make decisions related to their health and wellbeing, it is every health professionals duty to ensure that they understand the situation so that the person can make an informed decision about their own care. This means understanding the nature of their health condition or status, what interventions are available to them, the chances of successful outcomes and/or side effects, and what might happen if the person chooses not to intervene. This means that the person can consider multiple pathways and potential outcomes, how each pathway might impact them and finally, decide which pathway suits them best as an individual. This is notably important in complex health situations, especially when such decisions can impact family members, work and finances, living situation, or could possibly result in disability or mortality. These conversations are often very emotional conversations as the person comes to realise the potential gravity of the situation and how they and their life can change in the future. However, despite these (often) hard conversations, it's important for the person to have all of the relevant information so that they can make well-informed decisions. 

Eating and Drinking with Acknowledged Risk (EDAR) 

In the realm of Speech Pathology, these conversations typically occur in relation to dysphagia. As recently discussed in the Eating and Drinking with Acknowledged Risk (EDAR) article, a person can choose to eat foods and drink drinks that go against clinical recommendations when they have dysphagia and are at risk of choking or aspirating. However, there is a process to this so that the person can choose to do so while clearly understanding the risks that they are taking. As a Speech Pathologist,  it's important to ensure that the person understands the risk of choking or aspirating, which can range from minimal to high risk, and what can occur if these things happen. Probably the most difficult part of this conversation is explaining to the person that a severe choking episode or complete obstruction to the airway can result in death, and aspirating food or drink into the lungs can result in an aspiration pneumonia that can also lead to death. As difficult as that may be, these are particularly important to outline so that the person knows what they are risking in EDAR. It's also important to outline what a person or their family can do in these instances such as first aid, seeking assistance at the GP, calling an ambulance, going to the hospital or what could happen if they choose not to do these things, so that they understand the full picture of what they are choosing. 

Decision making capacity 

When a person is making decisions for their own care, sometimes this can be complicated by cognitive or psychiatric symptoms. These symptoms may be acute or episodic, and sometimes they are chronic and permanent. The reason for this is because in such a state, the person cannot fully comprehend all the right information and potential consequences in order to make an informed decision. In each of these cases, a person's "capacity" to make decisions for themselves can be considered inadequate and therefore the decisions must be made by someone else who is considered of "sound" state of mind. This is might be a next of kin or a nominated power of attorney or medical decision maker. Whether or not a person has the capacity to make their own decisions is a call made by the medical team but is often a decision made in consultation with the wider multidisciplinary team. This also does not have to be a permanent decision by the medical team, notably when the person's decision making capacity is compromised only for a period of time, such as when a person is experiencing delirium. As the delirium resolves, the person's capacity to make decisions returns. 

QOL factors 

Dignity of risk is particularly pertinent for people with chronic conditions when they are having to live with a "risk" long term. It's important to consider if the risk outweighs quality of life. If the safety measures required to eliminate the risk impact a person's quality of life or the effort to eliminate the risk is more burdensome than beneficial, this is when we consider the person's dignity to choose to live with the risk rather than opt for the safest option. When dysphagia is involved, this might look like choosing to drink thin fluids rather than thickened fluids even if there is a risk of aspiration.   

The palliative stage of care, though not necessarily end of life care, is also a time where we prioritise quality of life. Often, during this time, the ratio or balance between risk and quality of life changes in that a person might consider taking on more risk than usual depending on their prognosis and therefore this should be supported and respected as person's right to dignity of risk.  

Documentation and Communication

Often in health care or residential care settings, there are broader structures to support how we approach dignity of risk, especially when there is significant risk involved. There are usually policies and protocols that must be followed and care will often be somewhat influenced or guided by these. More often than not, these policies exist to support both the treating team and the patient and family while also following best practice guidelines. 

In the case that a person has an advanced care plan or directive, the decisions around dignity of risk have already been decided upon. An advanced care plan or directive is when the patient clearly outlines and records their wishes related to medical scenarios and care when they are of sound state of mind, should these scenarios arise in the future. This also removes the complication of decision making capacity and removes burden from a power of attorney or medical decision maker where it is relevant. 

Where a person is returning home or leaving the care of a service, it's important that discussions around dignity of risk and subsequent decisions that have been made are documented and provided to the other services providing care in the community. This might include general practitioners (GP), residential care teams, case managers and community nurses and allied health. This keeps relevant parties in the loop and means that these discussions don't have to be repeated across different contexts.  It also means that resources are not being wasted in engaging with additional services and re-assessing risks where they have already been explored before. This can be known to occur when patients are re-admitted to hospital and so restrictions are placed on a patient in order to enact safety measures where decisions around those risks have already been completed. However, if these discussions and decisions are recorded and on file, we can avoid the fuss and allow for a smoother and more positive experience to what can be an already stressful or uncomfortable situation.