When a Service User Refuses Care.

One of the foundations of care is that an individual has consented to its delivery. Care given without consent can constitute assault, so as well as being the ethically and morally right thing to do, consent protects the individual from potential litigation.

In some instances, a potential Service User might refuse consent to have care provided to them, which can raise a lot of questions for the provider, not least of which is “what do I do now?”.

In this blog we will consider what a provider needs to consider and do when a potential, or existing Service User refuses care.

Why People Refuse Care

There are many reasons that a person might refuse care and so it is worth considering what these might be before exploring how to address such scenarios.

People may refuse care for a variety of reasons, these include, but are not limited to:
• A poor previous experience of care.
• It is an affront to their self-esteem, and they fear losing independence.
• They feel that the provision of care is not dignified.
• They are afraid of intimate care.
• They are in pain or discomfort, and care makes it worse.
• They are worried about the cost.
• They don’t understand or believe they need care.
• They have an illness affecting their mind, e.g. dementia.
• They don’t like individual carers.

The Impact of Refusing Care

There are a number of impacts of refusing care which may accrue over a short, medium, or long period of time. The impacts of care refusal are also a function of the how much care the person is refusing and what residual ability they have to provide care for themselves.

Key among the impacts of the refusal of care are:
• Poor personal hygiene leading to becoming malodourous and dirty and increasing the risk of infections, e.g. oral or bodily thrush.
• Poor nutrition / malnutrition, leading to malaise and ill health.
• Dehydration which may associated with the increased risk of urinary tract infections and confusion.
• Increased risk of pressure ulcers.
• Increased risk of social isolation because other people shun the individual due to personal hygiene issues or because they are embarrassed and self-isolate.

Managing Refusals of Care

When a person has capacity, a refusal of care is often something which others must accept. Such acceptance might be challenged if their refusal starts to put others at risk, for example through hoarding behaviours which are often associated with care refusals.

Notably, self-neglect was included in the Care Act (2014), statutory guidance with regard to safeguarding. This does not make all instances of self-neglect a safeguarding event, however. For a refusal of care with self-neglect to be a safeguarding concern the person must have care and support needs which they do not have the ability to meet for themselves.

This means if an individual refuses care, self-neglects, has both capacity and the ability to provide care for themselves then the issue cannot be considered a safeguarding. Similarly, as the NHS point out, “Safeguarding duties will apply where the adult has care and support needs (many people who self-neglect do not), and they are at risk of self-neglect and they are unable to protect themselves because of their care and support needs.”

This means where a social care provider has concerns that a refusal of care might equate with a safeguarding issue of self-neglect then they should report it to their local authority Safeguarding Adults Board. It would be for the board to decide the way forward with assessments of issues such as capacity being undertaken by health and social care professionals.

Even in instances where a person lacks capacity and refuses care and a best interests’ decision has been made that they need care, it is neither reasonable nor desirable to force care on an individual. Instead, the management of care refusals should focus on understanding the reasons for the refusal and on building a rapport with the individual to understand their point of view.

Once the reasons for the refusal are understood, it takes patience and time to start to build up the confidence of the individual so that they accept care, this might involve strategies such as:
• Ensuring symptoms are appropriately managed, e.g. pain relief 20-30 minutes before any proposed care.
• Offering choices in care and not sticking to a rigid plan of care.
• Identifying if there are rewards they might accept for engaging with some care.
• Always remaining calm and non-judgemental.
• Continuing to actively listen

In some cases it is obvious that when someone refuses care, that they need an empathetic approach to addressing their fears or misconceptions. For example, an individual who is worried about losing their independence, might benefit from an approach whereby they are heavily involved in writing their care plan and carers are reminded to always ask before they provide care.

Similarly, an individual who has had a poor previous experience of care or who does not get on with particular carers might benefit from a small team of care staff who they have a role in picking. In this way they are put in control and can learn to trust carers again.

Record Keeping

Whatever the cause, or causes, of a refusal of care, it is important that social care providers keep a record of what is happening and why. This record serves a number of purposes including ensuring all staff are approaching the issue in a consistent manner and ensuring the care plan reflects the person’s preferences and issues which might trigger refusals. Records are also important if the issue needs to be addressed by health and social care professional colleagues, such as adult safeguarding, as they provide clues as to what is going on as well as proving that you have attempted to address the situation.

Summary

This blog has highlighted some issues which care providers need to consider when managing refusals of care. We have seen that there are a number of reasons as to why people refuse the offer of care and that this refusal can have a number of impacts on the individual and their health and wellbeing.

We have identified how understanding the reasons a person might have for refusing care is at the heart of strategies one might use to address the refusal. We have also identified that very few refusals of care are in fact a safeguarding issue and that the best way to address refusals is through listening, trying to understand the reasons for the refusal and developing a rapport with the individual.

Bettal Quality Consultancy has a comprehensive and regularly updated suite of policies, procedures and risk assessments tailored to all forms of social care provision, to support busy registered managers and their teams in the provision of CQC compliant care.

If you are still not sure whether your service would benefit from adopting our quality management systems and would like to know more, browse our website or contact our friendly team.

Email: info@bettal.co.uk
Telephone: 016977 41411

Peter Ellis MA MSc BSc (Hons) RN
Consultant
Bettal Quality Consultancy