In response to Covid-19 we are aware that some providers are being contacted by primary care services to ensure that advanced care planning is in place for people who receive care and support. This includes people who have learning disabilities and autism, in particular those who are in care homes.
Though this is a difficult issue to deal with at this time, it is important that relevant guidance and legislation is followed in relation to advanced care planning. This position statement sets out some key points for colleagues about which to be vigilant, so as to support processes around advanced care planning.
Relevant organisations, including the British Medical Association, Care Quality Commission, Royal College of Practitioners and the Care Provider Alliance have been clear that advanced care plans should not be applied to groups of people based on any description or characteristic. All advance care plans must be developed on an individual basis and take account of the individuals circumstances. This includes consideration of likely outcomes from different treatment options, including acute secondary care and critical care.
Working under pressure
Given the immense pressure services are under, we are aware that there may be a risk that health practitioners will want decisions to be made quickly and that managers may feel under pressure – for example to engage with decision making on an unplanned phone call from the GP. It is important that the processes highlighted below are observed for every individual and that services are directed to speak to people’s next of kin and care manager before advance care plans are put in place. Where managers feel like due process is not being followed, they should challenge and stress the importance of relevant legislation and key principles. If managers feel like they are being placed under pressure, it is appropriate to ask for a delay in the process to discuss with their OD and decide the best course of action.
Risk of blanket policies
Under no circumstances should teams accept health services advising that all people with a learning disability or autism will be treated in a particular way e.g. advice that no one supported will be admitted to hospital if they
contract Covid-19 or advice that all people should have a DNAR in place. These would amount to blanket policies and would likely breach equality legislation.
Before any decision about advanced care planning is made, it is important to establish whether someone has capacity to make decisions for themselves. This includes following the Mental Capacity Act principles, most relevantly:
- A person must be assumed to have capacity unless it is established that he lacks capacity
- A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success
- A person is not to be treated as unable to make a decision merely because he makes an unwise decision.
For people who have capacity to make decisions about advanced care planning, they should be supported to understand the issues in an appropriate way and supported to communicate their decisions in a way that suits them, in line with the Mental Capacity Act.
Challenging decision makers
For those who don’t have capacity to make decisions about advanced care planning, a Best Interests process should be followed, involving the person themselves, their loved ones and relevant practitioners in line with the Mental Capacity Act. If teams feel decisions have been made in advanced care planning without consultation and without following the Best Interests process then they should feel able to challenge decision makers. This includes decisions about DNARs. It is worth noting that challenge may not change the final decision, but it is crucial that due process is followed. These processes should also be recorded.
Keeping in touch with families, where appropriate, will be very important throughout this period. Proper planning with people and their loved ones, though difficult, will ultimately help people to exercise choice and control.
Criticial care decision making process
There has been some concern about NICE guidelines about admission to critical care. As with advanced care planning, NICE have been clear that any decision about critical care must be taken on an individual basis and patients and loved ones should be involved in the decision making process.
Whilst the guideline currently includes a metric called the Clinical Frailty Scale (CFS) score, NICE have been clear that this is not an appropriate metric to use in relation to people who have a learning disability or autism. Teams should feel able to challenge if the CFS is used to determine whether someone with a learning disability or autism is admitted to critical care. This might be particularly important when dealing with health services that have limited experience of working with people who have a learning disability or autism and limited understanding of how someone’s disability impacts on their day to day life.
Teams might want to contact learning disability liaison nurses to support processes and to assist with advocacy when it comes to advance care planning, admission to secondary care and access to critical care, where this is possible.