The role of an Advance Care Planning Clinical Nurse Specialist

Tiffany Brammeld, Advance Care Planning Clinical Nurse Specialist (ACP CNS) at Queen’s Hospital, Romford explains her role and it’s benefit to myeloma patients and their families/carers.

What is Advance Care Planning, and what does your role as ACP CNS involve?

Advance Care Planning is the voluntary process of planning for the future, including preferred place of care and preferred place of death. We can discuss resuscitation status, advance decision to refuse treatment and power of attorney. From a personal standpoint we can also discuss preferred music or radio stations, and ensure that patients’ preferred personal touches are continued with when they are less well.

Could you explain how the role started and what prompted it?

What prompted the service was the realisation that conversations around advance care planning were not happening early enough in some cases, and that many patients were leaving it too late. The role originally started in September 2022, covering four tumour groups initially (breast, lung, upper GI and neurology). The service has now opened up to both haematology and oncology, and patients can arrange an appointment at any stage of their condition.

How has the role developed since starting?

We now run three clinics a week, and try to coordinate with a patient’s clinic appointment so they don’t have to make two separate journeys to hospital. We also can arrange video calls and phone calls for those unable to make it in, although we try for face-to-face in a majority of cases as it is best to have individuals in the room for conversations around Advance Care Planning as this can be a sensitive topic for many.

We have now also developed “Coffee and Conversations” sessions where we have an informal chat to patients and their families around some of the aims of Advance Care Planning. We give patients the information they need to know, and have often debunked some myths about Advance Care Planning in the process! We find it useful as it helps raise awareness amongst the patient cohort. Consultants are now signposting to these sessions in their outpatient clinics.

What resources and staffing are required?

Currently it is only myself that provides this service at Queen’s Hospital. We are seeing more Consultants and Clinical Nurse Specialists referring patients in as they become more aware of the service. If patient numbers continue to increase, there may be scope for extra staffing.

What impact has the role had on patients, families/carers and colleagues?

It has had a very positive impact on patients and their families. Talking about Advance Care Planning can be triggering for some people, so it has been amazing to get patients and families together to get a full picture of the situation from different perspectives and make sure everyone is on the same page.

Can you offer any advice for other hospitals wanting to provide a similar role?

They key is getting out there and seeing what the needs of patients are. It’s also very important to raise awareness of Advance Care Planning; I speak at myeloma workshops, with the aim of spreading the word about the service to local support groups. It’s also important to encourage patients to discuss Advance Care Planning with their medical team at any time, even if there is no ACP CNS at the hospital. This is a conversation that patients should be bringing up with the Consultants and Haematology/Myeloma CNSs that are involved in their care.

Tiffany Brammeld
Advance Care Planning Clinical Nurse Specialist
Queen’s Hospital, Romford