. . . the face presents itself, and demands justice. (Emanuel Levinas Totality and Infinity)
My story is one that many are familiar with but I am hoping in this article to bring a view that will perhaps broaden the conversation around the treatment and management of those with dementia.
My father was diagnosed with Alzheimer’s disease several years ago and was cared for by my mother.
Over the progression of the disease he became increasingly confused, agitated and would often be resistant to personal hygiene actions. My mother did have some help with showering him, but was struggling to manage some of his behaviours.
To help manage his mood and behaviour he was prescribed the anti-psychotic Risperdal.
He was not psychotic and does not have schizophrenia or bi-polar disorder. After a particularly difficult period my mother contacted her GP who quadrupled the dosage of Risperdal. This had the effect of making dad unresponsive and led to him being hospitalised.
My family made the decision that it was time for dad to be moved to residential aged care, so a search began.
He was admitted to his local teaching hospital where after assessment he was transferred to the geriatric ward. On his first night, he wandered into another section of the ward and refused to return to his own bed.
He became increasingly resistant to nursing staff and at some point, a Code Black was called.
This meant that the security guards were called and he was physically moved back to his bed. The following morning, he was again resistant to nursing staff wanting to shower him and another Code Black was called.
By the time my mother arrived she found dad on the floor of the shower with three security guards and several nurses surrounding him. When I arrived the following day, I found both his arms completely covered in bruises from the physical handling. Dad started to significantly regress and was in a highly confused and frightened state.
This not uncommon situation, is highly distressing for everyone concerned including some members of the staff. I did manage to get a clinical case conference organised in the next week and eventually arrived at an agreement that Code Black was to be used as a last resort and that other behavioural approaches were to be employed to manage his resistance.
In these situations, what are the ethics involved? Ethics is founded in Socrates question of “what ought one do” it is about the actions we take. It is about finding what is good and right. Clearly, these are difficult and complex situations that staff have to deal with and there are many possible answers to the “what ought one do” question.
Where might we look for possible guidance? The first place is of course the relevant codes of ethics.
All medical and allied professions are based on four key principles. Non-Maleficence (do no harm), Beneficence (do good), Justice (all have equal access) and Autonomy (individual controls what is done).
For nurses their code is at least partially based on an ethic of care first proposed by Carol Gilligan. This includes values such as “Nurses value respect and kindness for self and others …Nurses actively preserve the dignity of people through practised kindness and by recognising the vulnerability and powerlessness of people in their care.”
For Psychiatrists their first principle is “to respect the essential humanity and dignity of every patient”
So how might these responsibilities to act in accordance with their code be discharged?
How does Code Black fit?
What of the response that staff are protecting themselves, other patients and even my father from further harm?
Clearly there is a need to respond to a resistant patient, the question becomes how?
Code Black does not discriminate for example, between the aggressive patient impaired by drugs who attacks others and the dementia patient who is confused and frightened.
The code is founded on a principle of “zero tolerance” that violence (defined as any incident, in which an individual is abused, threatened or assaulted) will not be tolerated under any circumstances.
The difficulty with zero tolerance is that it takes a criminal based approach to a social issue.
At the health system level a better response would be to base a framework on a Rawls Ethic of Justice which produces a fair and socially just response.
If we accept that there needs to be a response to patients like dad the next question is to what level? Code Black being based on zero tolerance is a blunt instrument.
If we turn to other examples, where response is required to aggression we can look to military ethics. Using the principle of proportionality any response must be proportionate to the attack. Using security guards who physically intimidate and man handle to the point of leaving bruises over both arms, I would argue is excessive.
Another argument that may be proposed; would be that the actions of staff are covered by the principle of double-effect.
This principle in brief, allows for the negative side effects in the pursuit of doing something ethical.
In health care, this principle is most commonly applied when treating the terminally ill (morphine is given to manage pain even though it will hasten death). In this case, the argument would be that patient harm (physical bruising, emotional trauma) is justified in the protection of others.
This can become a very complex argument but at its core it revolves around limited options. I would argue that in the treatment of people with dementia there are several other options that exist where both patient interest and the safety of others can be met.
One of the comments made by the NUM (Nurse Unit Manager) was that “they could not afford to have staff off on worker’s compensation.” Clearly staff welfare is important and safety is crucial for any working environment. The question remains: does this provide sufficient ethical argument for the use of the Code Black Protocol in regards to all patients?
Let me return to the comment made by the NUM, clearly resources are limited in the hospitals and the impact of staff being absent is a cost born by all of us. This economic argument is increasingly used to justify actions and in ethics would be framed as a consequentialist argument around best use of resources for the greater good.
In this case, it is in conflict with the demands made by codes of ethics that those involved in health care have a duty to uphold. At its most basic Code Black becomes an impingement on core human rights that everyone is treated according to their need.
In contrast to the approach taken at the hospital the staff at the aged care home have taken a behavioural engagement approach to dad’s difficult behaviours. They used a DBMS advisor to develop a protocol that for the most part resolves the balance between interests of dad and safety of others. It was resource intensive with a 1:1 carer being allocated for settling in period. Nothing is a perfect solution these are complex situations.
But at no time do I fear that dad will be mistreated.
There is a pressing need for the health system to re-evaluate the use of Code Black for people with dementia. In addition, we all need to engage in the conversation around the practices and care of those with dementia. In borrowing from Levinas we have a duty to respond just because they exist.
Enjoy this story and don't want to miss a Dementia News? Subscribe to have Dementia News delivered straight to your inbox.
1 Gilligan defines ethic of care as an ethic grounded in voice and relationships, in the importance of everyone having a voice, being listened to carefully (in their own right and on their own terms) and heard with respect. An ethics of care directs our attention to the need for responsiveness in relationships (paying attention, listening, responding) and to the costs of losing connection with oneself or with others. Its logic is inductive, contextual, psychological, rather than deductive or mathematical.
2 Rawls theory of justice is based on two principles 1. That each person is to have an equal right to the most extensive basic liberty compatible with a similar liberty for others and 2. That social and economic inequalities are arranged so they are to be of the greatest benefit to the least-advantaged members of society.
* This article has been written by Phillip Wright. Philip is a son, psychotherapist and senior advisor for The Ethics Centre. Ethics of Code Black Protocol reflects his views.