How to produce advance care plans in a COVID-19 lockdown


Coronavirus and lockdown are producing issues across the board.

But with deaths in care homes making headlines, how can providers ensure they are supporting people to make advance care plans? Leah Cooke from QCS shares details here.


It’s a figure that’s as grim as it is troubling. According to the Office of National Statistics, deaths in care homes across the UK have risen by 220% since the coronavirus epidemic began. To provide some context, the BBC says that, in England and Wales alone, a third of COVID-19 deaths occur in care homes.

None of this is the fault of care providers. In this crisis, where access to PPE and testing are in short supply, they have done their best, against almost insurmountable odds, to deliver person-centred care to the people they support.

But in these unprecedented times, where the death toll in care homes remains stubbornly high, well-led homes are ensuring that residents – particularly those who are vulnerable – are given every opportunity to discuss advance care plans.

Some people may well not wish to make advanced plans for end of life care. However, for many it’s vitally important that they’re given the choice. A joint guide by Social Care Institute for Excellence (SCIE) and National Institute for Health and Care Excellence (NICE), makes a powerful case for advance care planning. It states that this offers an opportunity for people to plan their future care and support, including medical preferences, while they’re still able to do so, rather than face a future where somebody is making those key decisions for them.

While such plans are essential for everyone, many care home residents don’t wish to contemplate end of life care. But COVID-19, which has claimed the lives of thousands living in care homes, has persuaded many to re-think. So, for those responsible for drafting advance care plans, what does best practice look like?


Laying the foundations

Leah Cooke, a qualified registered general nurse, who also consults for QCS, a leading compliance provider, says that for the majority of homes the journey begins ‘before a person moves into the home, when initial assessments are made, when living in the home and if readmitted back to the home after a period of time away.’

Leah, who has over 20 years’ experience writing advance care plans, says that ‘gathering the information to write an advance care plan is far from straightforward.’ Unlike standard plans, she says that ‘advance care plans may mean different things to different people, can be fluid, organic and are not legally binding.’

She explains, ‘The key skill for care staff is to always listen and to respect the decision of the person they’re supporting. Most of all, advance care planning requires a sensitive approach and a bond of trust between the care worker and the resident. When that relationship of trust has been forged, care workers need to look for signs for when to approach the person, and should be ready to explain why advance planning makes sense. They also need to be prepared to recognise that when a person expresses their wishes, the likelihood is they won’t do so all at once. Most plans are created over time and not in one sitting. Indeed, it’s small snippets of information captured in each discussion that often form the cornerstone of the plan.’


The Mental Capacity Act

Around 70-80% of people in care homes are currently living with some form of dementia or severe memory issues, and working with them to write an advanced care plan can be challenging. For those presenting with dementia who are not able to make decisions, Leah says that care staff must always factor in the Mental Capacity Act when writing advance care plans.

‘A person’s family should be consulted and best practice dictates that they be given the opportunity to review the plan and feed into it. Registered managers should also understand the difference between advance statements, which are not legally binding and advance decisions, which are. Finally, when a resident is considered no longer able to make decisions, while it’s a solicitor’s job to register a lasting power of attorney application, a registered manager also needs to understand what the legislation entails and how it will affect the person they support.’


DNACPR forms

With the UK-wide coronavirus lockdown into its eighth week, advance care plans which require the input of friends and family have become more challenging to draft. Lockdown has also meant that access to healthcare professionals, who can advise on end of life care, are no longer able to meet face to face. As a result, in some cases, a palpable lack of communication has caused confusion. Last month, for example, a handful of care homes and GPs in England and Wales attached blanket Do Not Resuscitate forms (DNACPR) to advance care plans without people’s consent. The Care Quality Commission (CQC) quickly intervened, calling the practice ‘unacceptable’ adding that ‘decisions must continue to be made on an individual basis according to need’.

Leah, who is also a specialist adviser for the CQC, agrees that DNACPR forms ‘can never be blanket based.’ She says that while a DNACPR form is part of an advanced care plan, it should not be confused with such a plan. She explains, ‘DNACPR is a clinical decision made by a medical professional, whereas advanced care plans are person-centred plans that capture what an individual would or wouldn’t want in regard to future care (if they are unable to make the decision themselves at the time). There is a big difference.’

With there being some confusion around who can issue a DNACPR and how and when it is administered, Mrs Cooke has this advice, ‘If Registered Managers are not sure how to proceed, they should always check local policy first. Secondly, during the admission or review process, care staff must check to see that there is a pre-existing DNACPR in place. If in doubt, they should always contact their local GP as care staff cannot make these decisions themselves.’

If a DNACPR form hasn’t been completed, Mrs Cooke says that from a compliance perspective, the role of care staff is three-fold.

‘While carers should never force a conversation around DNACPR forms, they should create a person-centred environment where people feel comfortable to communicate their wishes in a medical emergency. And most importantly, when they do express their views, care workers should listen, record their wishes and share them with the person’s GP in the first instance. Thirdly, if a person doesn’t consent to a DNACPR form, the care staff must be able to document that conversations have been attempted and escalate their decision to their GP.’


Best practice

Finally, Mrs Cooke says, ‘knowing how and when to initiate a conversation with a resident takes skill and experience.

‘Not everyone is natural communicator and therefore practical training is required. The best care homes don’t just ensure that their staff have access to these sessions, they revisit and reinforce advance care plan training on a regular basis.’

Leah also notes that well-led care providers go the extra mile to collaborate and partner with national bodies. She singles out the Resuscitation Council’s ReSPECT plan, as a great example of best practice.

She explains, ‘The two-way continuous dialogue not only enables the clinician to explain the treatment options available in an emergency, but gives the person, who may have complex health needs, the requisite knowledge and understanding to make informed decisions as to when they might and might not want to be resuscitated. The hope is that the ReSPECT plan never has to be acted upon, but in terms of advance decision making, it represents a positive step forward.’

Leah Cooke is a Nursing and Residential Care Lead. She consults for Quality Compliance Systems (QCS) on a number of areas relating to care management and practice in residential care.

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