In December 2018, the British Medical Association (BMA) and Royal College of Physicians (RCP) published new guidance for England and Wales on clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent.
Annette Hand, Parkinson's Nurse Consultant and Excellence Network clinical lead, reflects on this new guidance and the challenges of getting advanced decision planning conversations right.
THE IMPORTANCE OF DIFFICULT CONVERSATIONS
Within our service, and from the UK Parkinson's Audit, we know that as specialist clinicians we need to get better at having conversations with people with Parkinson's and their loved ones about advanced care planning (ACP) or advanced decisions to refuse treatment (ADRT).
It can of course be difficult to work out when the best time is to have advanced planning discussions. Sensitive topics like this need to be discussed in an appropriate setting and with enough time to process information. This can't be done within a 10-minute clinic consultation.
However, it is key to have decisions made and documented with patients, so that ACP and ADRT are in place and people remain in control – even when they lose capacity. And, clinically-assisted nutrition and hydration (CANH) needs to be considered.
PARKINSON'S AND CLINICALLY ASSISTED NUTRITION
Unfortunately, due to the nature of Parkinson's, many of us are involved in discussions and decisions about whether to start, continue or stop CANH for people with Parkinson's.
This new joint guidance document has been produced as a valuable tool for healthcare staff which covers decisions to start, re-start, continue or stop CANH in adult patients in England and Wales who lack the capacity to make the decision for themselves.
Section 3 of the guidance specifically covers patients who have a recognised neurodegenerative condition (including Parkinson's and dementia).
This guidance provides useful practical advice and support in decision-making in this very complex and sensitive area of practice. It has been developed to support doctors in making ethically and legally sound decisions in the interests of patients in a wide range of clinical situations.
However, it can also support the wider healthcare team in making these decisions.
MAKING TEAM DECISIONS
Although the guidance is principally aimed at doctors, it encourages advice seeking when a clinician has limited experience of the condition in question. This is often the case with Parkinson's. Therefore, it is crucial that the specialist clinical team, and those close to the patient, share clinical information and information about the patient, so that the ultimate decision-maker has sufficient knowledge about the patient to make a judgement about whether CANH would be in the patient's best interests.
Over the years, I have seen a number of people with Parkinson's admitted to hospital, often due to an infection, who were extremely poorly and at the stage when ward staff may have felt that end of life was near. It was often only through our specialist team knowing those patients, the stage of their condition, and ensuring that Parkinson's medications were administered in a correct and timely way, that the outcome was much better than expected.
This just highlights the need for admitted patients to be reviewed, and a second option provided by health care professionals who know them, to ensure appropriate CANH decisions are made.
OUR LOCAL APPROACH AND EXCELLENCE NETWORK PLANS
Locally, we will be sharing this document within the team and discussing it at our next team meeting. We will work with our specialist consultants and medical colleagues to agree the most practical way that this guidance can be used across our Trust (which covers multiple hospitals).
Within the Excellence Network we fully appreciate that discussions and decisions around advanced care planning for people with Parkinson's are difficult, and something as professionals we generally acknowledge we could do better but need more support on.
In my role as an Excellence Network clinical lead, I am currently working with colleagues to map out what support we have already, examples of good practice, and where the gaps are to provide further support and guidance to all staff in this difficult area of care. We will also be reviewing information for people with Parkinson's and their loved ones around the importance of ACP and ADRT.
This guidance, which provides practice advice around CANH, will be added to our Excellence Network tool kit within advanced care planning to help guide and improve practice.
Annette Hand is a Nurse Consultant in Parkinson's at the Northumbria Healthcare NHS Foundation Trust and Associate Professor at Northumbria University.
Within the Excellence Network Annette is the clinical lead for nursing.