Residential aged care providers have a duty to provide quality care to all residents. At the same time, providers also have a duty to respect residents’ choices and independence. In a situation where a resident refuses care, which of these two duties is an aged care provider supposed to follow?
What is refusal of care?
Refusal of care occurs when a resident chooses not to accept the services offered by an aged care provider.
Conflicting obligations: duty of care vs consumer choice
When it comes to managing refusal of care, aged care providers are subject to conflicting obligations that can be difficult to reconcile.
Aged care providers must provide care to all residents
Aged care providers have a basic legal duty to provide quality care to residents. This duty threads through the whole of the Aged Care Quality Standards but is emphasised in Standard 3, which requires the provider to deliver “safe and effective personal care, clinical care, or both personal care and clinical care, in accordance with the consumer’s needs, goals and preferences to optimise health and well-being.”
Providers who fail to meet their duty of care to residents may increase the risk of harm to residents and may receive findings of non-compliance and even sanctions.
Aged care providers must respect a resident’s right to make choices and take risks
Under Standard 1 of the Aged Care Quality Standards, providers are required to support residents to “exercise choice and independence” and “take risks to enable them to live the best life they can.”
Providers who fail to meet this requirement may diminish residents’ independence, choice and dignity and may receive findings of non-compliance and even sanctions.
The conflict is genuine and challenging and should be acknowledged
What should a provider do if a resident refuses care? On the one hand, the provider must provide care, on the other hand the provider must respect the resident’s wishes. This is a genuine and challenging conflict that is not clearly acknowledged by the aged care regulatory system.
The aged care regulatory system is built on a foundational principles of consumer independence, dignity and choice. These same principles were emphasised by the Aged Care Royal Commission under the banner of “person-centred care”, which has become the guiding principle behind the government’s aged care reform agenda.
Our entire aged care regulatory system is built to put choice first. This is a good thing, overall, but it does leave some gaps. Specifically, our aged care system tends to assume that it is always possible to care for a resident and respect their choices. It does not fully acknowledge these unpleasant realities:
- Sometimes a provider must support a resident’s choice to refuse care and therefore endanger themselves.
- Sometimes a provider must provide care to a resident against the resident’s own wishes.
Providers, however, cannot avoid these realities and must figure out how to manage them in a way that does not breach their compliance obligations.
When is it appropriate to support a resident’s decision to refuse care?
Refusing care is potentially harmful to a resident/consumer. Standard 1(3)(d) of the Aged Care Quality Standards advises that “if consumer choices are possibly harmful to [consumers], organisations are expected to help the consumer understand the risk and how it could be managed to help them live the way they choose.”
This suggests that it is only appropriate to support a resident’s decision to refuse care if:
- you have explained the risks involved and how to manage them; and
- the resident understands what you have explained.
Bear in mind, this is not a “set and forget” process. People change their minds, and different situations mean that we would choose differently. After informing a resident of the risks involved and supporting their decision to refuse care, you will have to check in regularly to see if they maintain that decision.
The dementia complication
Residents living with dementia may not be capable of understanding or remembering the risks involved in refusing care. This means that if a resident living with dementia refuses care, you may need to explain and support them in a decision-making process each time prior to care or find other ways to provide care. Below, we’ll discuss how you might do this while maintaining the resident’s dignity and independence.
For more information on caring for residents living with dementia, see Dementia Australia’s help sheets:
Risks involved in supporting a resident’s decision to refuse care
If you support a resident’s decision to refuse care there is a risk that:
- the resident will suffer harm
- you will breach your duty of care and compliance obligations.
Refusal of care and the SIRS
The SIRS says that otherwise reportable incidents are not reportable if “the incident results from the residential care recipient deciding to refuse to receive care or services offered by the approved provider.”
Neglect
When we think of risks associated with refusal of care we tend to think of acute risks, such as a resident experiencing a fall after refusing help with walking. But there are less obvious risks, in particular the risk of neglect.
In the context of caregiving, neglect is a form of abuse where the perpetrator, who is responsible for caring for someone who is unable to care for themselves, fails to do so. Refusal of care may escalate into neglect in a number of ways, including:
- a caregiver accepts a resident’s fully-informed decision to refuse care, but then later fails to check in with the resident to see if they maintain their decision long-term
- a caregiver repeatedly accepts a resident’s decisions to refuse care without fully explaining to the resident the potential consequences of those decisions.
What if you repeatedly explain the consequences and regularly check in with the resident but the resident still refuses care on a long-term basis? Will this constitute neglect? Technically no, but beware: in this situation you leave yourself open to a charge of neglect that you may have to work hard to refute with carefully marshalled evidence.
When is it appropriate to insist on providing care against a resident’s wishes?
As noted above, Standard 1(3)(d) of the Aged Care Quality Standards advises that “if consumer choices are possibly harmful to [consumers], organisations are expected to help the consumer understand the risk and how it could be managed to help them live the way they choose.”
This suggests that it may be appropriate to insist on care if:
- you have explained to the resident the risks involved and how to manage them; and
- the resident does not understand what you have explained.
Although it’s not explicitly stated, we can assume that your effort to explain must be a genuine effort that gives the resident every chance to understand.
It may also be appropriate to insist on care in a situation where the resident’s decision to refuse care might harm others, e.g., the resident refuses treatment for an infection that might spread to others.
What if the resident makes a fully-informed decision that is almost certainly going to cause them harm? Technically, you should respect their decision and refrain from providing the care. But beware: if the resident suffers harm, you leave yourself open to serious charges that you may have to work hard to refute with carefully marshalled evidence.
Risks involved in insisting on providing care against a resident’s wishes
If you insist on providing care against a resident’s wishes there is a risk that:
- the resident will suffer a loss of independence and dignity
- you will breach the requirements of Standard 1 of the Aged Care Quality Standards.
Solutions: relationship-based care and a broader concept of choice
The ideal solution: relationship-based care
At its core, managing refusal of care involves explaining a risk and then determining whether the resident has understood what you’ve said. In practice that is a massively complex task.
The good news is that this kind of complexity is easy and natural for humans to manage within the context of a personal relationship. If you have a personal relationship with the resident and know them well, it will be easy for you to talk to them and check if you understand their choices and they understand your explanation of the risks involved. You will be able to see their refusal of care in a larger context: is this the first or fifth time they’ve asked? Did they make the exact opposite request yesterday? Is this their way of raising a deeper point about something else that is really bothering them? You will know the answers because you know the resident and most importantly their choices and preferences.
The simplest and best solution to managing refusal of care is to know your residents well. The bad news is that this solution is not always possible. As the Aged Care Royal Commissioners put it in their Final Report:
Research on residential aged care staffing levels that we commissioned from the University of Wollongong found more than half of Australian aged care residents were living in facilities with unacceptable levels of staffing. One of the consequences of these low levels of staffing is that staff simply do not have time to interact meaningfully and compassionately with older people. Care therefore becomes merely transactional rather than based upon relationships.
We may use different words to describe the human face of that kind of ‘care’; some of us would see it as inhuman; but it is also inefficient. Knowing those they care for helps care staff to understand how someone would like to be cared for and what is important to them. It helps staff to care—and to care in a way that reinforces that person’s sense of self and maintains their dignity. This type of person-centred care takes time. The evidence is that current funding levels in residential aged care do not allow workers the time to provide high quality relationship-based care. (Volume 1, p 8).
The interim, practical solution: broaden the concepts of choice and dignity
The staff-shortage crisis in aged care won’t be solved overnight and providers still have to manage refusal of care in the meantime. So here are some steps you can take right now:
- Broaden your understanding of choice and dignity: respecting choice does not mean saying yes to everything. It means listening to the resident and involving them in the decision-making process.
- Make sure you explain: make sure you explain the risks involved in refusing care, and explain in a way that the resident can most easily understand, taking account of any language barriers or hearing/cognitive impairments.
- Ask questions: the resident’s refusal of care may not be the real issue. If you can discover the underlying problem you may be able to solve it without denying care.
- Brainstorm alternatives with the resident: ask the resident for alternatives to refusing care. Can care be adjusted rather than refused? Suggest your own alternatives as well.
- If in doubt, seek help: encourage staff and residents to contact specialist services for help with understanding how to adjust care that supports the individual and their preferences.
Finally, be prepared to demonstrate a “careful yes” or “respectful no”. If you support a resident’s decision to refuse care, you could breach your obligations and get sanctioned by an assessor. Conversely, if you insist on care against a resident’s wishes you could face the same kind of trouble. Be prepared. Keep records that justify your decisions.
If you support a resident’s decision to refuse care, be ready to show:
- that you gave a careful explanation
- that the resident understood
- that you took steps to mitigate the risks
- that you checked in with the resident regularly.
If you insisted on providing care against a resident’s wishes, be ready to show:
- that you gave a careful explanation
- that the resident understood
- that you listened to the resident and genuinely involved them in the decision-making process.
