10 minutes with Anne May
Anne May is a clinical nurse educator who works in a palliative care unit in Sydney. Having worked for 20 years as a women’s health worker, focussed on domestic violence and abuse, she reminds us that abusive behaviour can also occur across the range of palliative care settings.
While stress might spark one-off incidents of poor behaviour, chronic abuse is too often dismissed as being part of a grief reaction, which can leave victims vulnerable.
Given that death tends to be a taboo topic, how difficult is it to raise the issue of abuse in a palliative care setting?
People generally don’t want to talk about abuse or death; it’s combining two taboo concepts. Violence and abuse can take many forms, physical, emotional, sexual and financial with one in three women experiencing abuse in some form in their lifetime particularly family violence. Men also are victims of violence and abuse but their experience may be quite different.
If we are looking at patterns of behaviours, past behaviour may predict future behaviour, so if someone has been abusive in the past, it may well occur again, particularly if they are under stress or not feeling in control. It’s not surprising that while it’s confronting, it is an issue that is important to consider in palliative care.
In palliative care, I think there is a tendency for abuse behaviours to be overlooked and discounted, and put down to being just part of a grief reaction, because it is such a difficult issue to address. It’s really challenging for people working in palliative care to know how to address concerns. A good place to start is by naming the behaviour as abuse.
What kind of abuse might occur in a palliative care environment?
Some of the abuse I’m talking about includes the behaviours that people see in acute settings, like intimidating body language, using bad language and aggressive tones. Often that is discounted as just being part of grieving.
Then there are other behaviours, where you might start questioning whether a carer is actually advocating for their loved one, or controlling what is happening. That can be subtle, but when I see something out of bounds or concerning, I question it.
There are also situations where a family member insists on pain relief medication being reduced and that leads to a patient experiencing a pain crisis. Usually it is because a family member is adamant that a patient’s deterioration is due to medication, not the disease. You see that scenario quite a lot, and most of the time the family member ends up conceding, but every now and then you’ll have someone who is adamant.
That can be traumatic for staff. At what point does a health professional say, no, I am not going to withdraw that pain relief? And how do you determine whether their motivation is abuse or ignorance? Typically abuse fits with a pattern of behaviour, rather being evident in a one-off request.
It can be hard, as a practitioner, to know when to step in. People working in palliative care have a holistic role which includes caring for the family as a unit. With that come skills that help you critically assess nuances within family dynamics.
How likely are people receiving palliative care to let you know if they’re experiencing abuse?
The same factors that prevent people reporting abuse generally in society are, of course, often still at play at the end of life, so many people will not raise the issue.
It is a subject, however, that might be appropriate to raise as part of a life review, where you support a patient to look through their achievements and or regrets. That’s often a time when people cover any issues that need addressing or where they might achieve reconciliation. There is a lot of value in doing life reviews well.
It’s a particularly difficult issue to broach with somebody who is struggling to speak for themselves. A lot of our clients who are competent intellectually are facing serious issues tied in with fatigue, disease load and the process of withdrawing that occurs at end of life. You wouldn’t say they are incompetent, but they don’t have the energy to advocate for themselves. That can make them vulnerable.
People working in palliative care may feel understandably challenged to address these issues. It’s made even more difficult when you consider the family dynamics, like collusion and secrecy, which are associated with abuse.
But I think there is value in discussing it, just as there is in discussing death. In addition to raising awareness, there is value in education and applying a model that would help to identify abusive behaviours and stop them being discounted. There are models out there, but they’re implemented sparsely and probably better known in places with specialised knowledge of trauma and abuse, like sexual assault units.
Are there any people in particular we should be looking out for?
Generally, there is also value in having a trauma-informed approach to care, which means that you go in with an a philosophy and understanding that your client may have experienced trauma or abuse previously. That is particularly relevant given our increased population of refugees coming through palliative care. In addition to having experienced trauma and abuse, they are made even more vulnerable if language barriers limit their ability to express themselves and understand others. A Trauma Informed framework considers the importance of the physical environment, the way you approach the client therapeutically, policies and procedures, to try and ameliorate further trauma.
How did you end up working in palliative care?
I was exposed to death from a young age which meant I became comfortable with death and dying and that led to my interest in palliative care. I trained as a nurse and then studied social work. My first palliative care job was at Mary Potter Hospice in Adelaide, but because of various life events. I left after 18 months, but I always thought I’d come back to palliative care.
At the moment I’m developing an in-house program for staff, with a focus on reflective practice and critical analysis, which gives room for exploration and enquiry. Rather than being didactic, the program will help staff to better understand themselves, where they are coming from and the perspectives they bring with them; that all impacts on way you interact with patients. When you have a uniform on, and are supporting people at the end of life, a sophisticated level of self-awareness is important.
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