Justin Hayes is a GP working in South London. He was involved in the development of the ‘Advance care planning by phone or video’ resource discussed in this blog.
Since Covid-19 took hold, end-of-life decision-making has become an unavoidable subject. Issues of end-of-life care are being covered in the media like never before, with varying degrees of accuracy and sensationalism. This new attention has sparked understandable fears amongst the public that doctors may be making sweeping decisions about whether certain groups of people receive life-saving treatment or not. Many people are concerned that they have no say in life and death decisions that are currently being made on a seemingly arbitrary basis.
Sadly, some of these concerns do have some truth to them. We have all heard that some health and care providers have been applying blanket Do Not Attempt CPR (DNACPR) notices. Not only are these notices unlawful, but they also highlight existing communication problems around end of life issues; issues which are exacerbated by the current crisis, and are now under great scrutiny from the media.
GPs have been at the centre of this backlash, and unfortunately some of it has been directed at well-meaning, sensible attempts to set the record straight about DNACPR and other forms of advance care planning. This is a real setback for GPs attempting to have constructive conversations about end-of-life wishes. It also disadvantages future clinicians who will have to make difficult decisions based on little or no information about what someone would or would not want. But it is our patients who will ultimately suffer if we don’t get this right.
When done well, conversations about end-of-life planning can give people a valuable sense of control and reassurance in the present, as well as helping to ensure they get the care and treatment that’s right for them in future. When done badly, or not at all, people can end up receiving treatment that’s not in line with their personal preferences, resulting in bad deaths and trauma for those left behind.
Important as they are, conversations around end-of-life planning can be challenging, and current social-distancing and quarantine measures mean that most of them are now taking place over the phone or video call. Having such sensitive conversations in these circumstances is unfamiliar territory for doctors and patients alike, which is why me and some of my GP colleagues reached out to Compassion in Dying for advice and support.
Compassion in Dying has conversations about end-of-life planning over the phone every day. Through its nurse-led Information Line, Compassion in Dying supports people to translate their end-of-life priorities and wishes into a plan for their future care and treatment. I have worked with the charity through the Lambeth Advance Care Planning Consortium, which provides one-to-one support for Lambeth residents to plan their future treatment and care.
We want our patients to understand that GPs are here to help them make informed decisions that are right for them.
A new resource for GPs
Together, Compassion in Dying and GPs have developed the ‘Advance care planning by phone or video’ framework. This resource will support GPs to have more person-centred conversations with their patients during quarantine. It involves:
- Checking in with the person in a sensitive way, telling them, “I want to find out more about what’s important to you and the type of care you would want if you become unwell”.
- Exploring any worries, questions or goals they may have.
- Working with them to make and record decisions.
I generally find the most difficult part of these conversations is broaching the subject in the first place, and the framework contains tips for doing so. For me, thinking about what will help the patient focuses my mind and allows me to disregard other perceived pressures.
The framework includes suggestions for how to explain that CPR or critical care is unlikely to benefit a patient. Consequently, declining treatment becomes a joint decision based on the person’s best interests. Also, the framework explains how GPs can ensure their patients’ wishes are properly recorded so that they are known no matter the context (eg using a DNACPR, an Advance Statement, an Advance Decision and/or a Lasting Power of Attorney).
What the patient wants
The framework will be reviewed regularly, and Compassion in Dying welcomes feedback on where it can be improved or adapted. We are committed to constantly improving this resource in order to benefit our patients, who, first and foremost, this is all about. We want our patients to understand that GPs are here to help them make informed decisions that are right for them, whether their wish is to accept all treatment aimed at prolonging their life, or to refuse certain treatments and prioritise being comfortable in a setting that suits them.
End-of-life planning has gained a special focus in the current pandemic, but it really just highlights what we want to be doing all the time: respecting our patients as individuals, and supporting them to put plans in place which honour their individual preferences.