Your professional responsibility

This is a short learning unit – and perhaps what it says is obvious – but may be needed to help set the context for this course as a whole.  We think these points need to be underlined to ensure all professionals and organisations step up to their responsibility. Failures in taking responsibility for best interests have led to patients being mistreated, and to severe criticism (eg in court judgments) of professionals and organisations.

Read through the points below and make notes about your specific role and the implications.

Professional  have a duty to understand what ‘Best Interests’ decision-making involves, need to be sure a proper best interests assessment has been carried out and always have to act to protect the best interests of patients/clients. (We are, of course, thinking here about a patient/client who lacks capacity to make the relevant decision for themselves, and who has not recorded their decision in an Advance Decision).

1. You have a responsibility to centre the individual patient’s values, wishes, beliefs and feelings (alongside other information eg clinical assessments). Decision should not be biased by what you’d want if you were in this situation, and should not be biased by what suits the organisation.
2. Best interests decision-making applies to life-sustaining treatment just as much as any other decision (eg where the person might be cared for).
3. You may be part of the decision-making process, or lead it, but it is always part of your professional obligations. The ‘lead’ decision-maker is important to identify (more about this later) –  but whatever your position you will have responsibilities.

Examples of role specific responsibilities:

• • If you are a  direct healthcare provider to a patient (e.g. their doctor, nurse or therapist) you need to be sure about the patient’s best interests. You should not, for example, decide that, as a GP, you will simply continue to sign off on CANH because someone else, eg a gastroenterologist or neuro-rehabilitation consultant, made the decision to put in a PEG.
  • If you are responsible for commissioning care or assessing the patient’s funding eg working for the Integrated Care Board (ICB) then you need to be sure that the treatment being commissioned/funded is in the patient’s best interests, and this includes ensuring that best interests processes have been carried out around clinically assisted nutrition and hydration.
  • If you are responsible for assessing the quality of care (e.g for the CQC) you need to be sure that care quality includes robust best interests processes.

If you are a manager in any of the organisations that employ people in these roles then you need to ensure you have a fit-for-purpose policy, training and practice that complies with the Mental Capacity Act and to be aware of recent case law and its implications for your organisation.

Diverse roles – an example of the responsibility of those who commission care

The role of different organisations and professionals in relation to treating PDoC patients is addressed in detail in the PDoC guidelines produced by the Royal College of Physicians [RCP] which were published in 2020. (Links to all resources/references are at the end of this course). To gain a glimpse into what the guidelines say have a look at the text box below. This is reproduced from the RCP guidelines. It focuses on the role of organisations that commission care for these patients (at the time this was CCGs, but since 2022 this role has been taken over by Integrated Health Boards).

It has become clear that not all organisations, and the professionals within them, are doing what they should do.

For example, recent court case have included evidence that Integrated Care Boards (that replaced CCGs in 2022) have failed to ensure that the care they are funding is appropriate or failed to act quickly to help address uncertainty about a patient’s best interests (eg in getting a case to court). Note the strongly criticism of an ICB  made in a judgment by Mrs Justice Theis, Vice President of the Court of Protection:

“In my judgment the ICB has an important, critical role to play. As the Clinical Lead for the ICB set out in her statement ‘The ICB will undertake as a minimum an annual review of the care commissioned to ensure that the care package remains appropriate to meet the service user’s assessed needs’ (emphasis added). For these reviews to be an effective mechanism they should include active consideration by the ICB at each review to be vigilant that the care package includes an effective system being in place for best interest decisions to be made in these difficult cases so that drift and delay is avoided. The ICB should not just be a bystander at these reviews.” [NHS North Central London Integrated Care Board v Royal Hospital for Neuro-Disability & XR [2024] EWCOP 66 (T3), para 92]

Judgments such as this (and our own research) makes it clear why everyone needs to be aware of their responsibilities for patients’ best interests, and all relevant organisations need to play their part.

You’ve now completed the second module. Well done!