Advanced Decisions to Refuse Treatment FAQs around COVID-19

25 March 2020

Dr Catherine Millington Sanders is the College lead for End of Life Care. Here, she explains the implications of COVID-19 for this important area of work, along with useful guidance to support GP teams.

If a patient has signed an Advanced Decisions to Refuse Treatment (ADRT), does it mean they will automatically not be put on ventilation if needed, should they be hospitalised with COVID-19?

Each ADRT is specific to an individual and their wishes and which decisions they want to REFUSE. ADRTs apply to specific decisions for specific circumstances that are documented. Therefore, it very much depends exactly what has been written in the ADRT. Some people may have added very specific statements in their ADRTs that are still quite general REFUSALS of particular treatments, for example, ‘I do not want to be placed on a ventilator in any circumstances, for whatever reason this may arise, for conditions present or future even if this will shorten my life’. In these, we suspect very rare, cases the ADRT would still apply but, as always, an ADRT only applies if the person had lost capacity and was not able to express their wishes at the time.

If a patient would want to be ventilated or receive other life-sustaining treatment should they be hospitalised with COVID-19, how can they change their ADRT?

For 'active' care preferences, these can be specifically documented in a person's personalised care and support plan. For many patients, GPs will already have these care plans and people's wishes documented and these can be updated with their GP at any time. There are different versions available around the country for people to reflect on and document their preferences for their care and a copy of these care preferences can be held with the person and any care-giver, as well as a copy being given to key professionals - for example, GPs can add these wishes to a patient’s medical record and this can be shared with key care professionals involved in their care.

Examples can be found on the My Decisions and My Directives websites. Using online sites like these with printable templates, given the current pressures on general practice and across the NHS, may be easiest way for patients to write their wishes down, discuss them with the people important to them, and with regard to treatment of COVID-19, pass this to their GP Practice.

Can a patient say they want life-sustaining treatment if diagnosed with COVID-19 but don't want life-sustaining treatment for any other condition?

An ADRT is evidence of a person's advance wishes to refuse a treatment under specific noted circumstances. If the person's wishes change, there are a few options. Someone can update the ADRT or inform the people involved in creating the ADRT with them and any people and professionals they have shared the ADRT with that their ADRT has changed and give them an updated copy. Alternatively, someone may wish to 'cancel' the ADRT decisions and where possible describe treatment options that they do want. 

There are national examples of personalised care and support plans that include treatment escalation plans which can be used to support these discussions.

Specific to COVID-19, if a person is aware that their ADRT says do not resuscitate or ventilate in particular circumstances that might include COVID-19, and they actually do want treating in all circumstances for COVID-19, then they can choose to update their ADRT as above. 

If someone doesn’t have an ADRT but are worried about COVID-19 and do not want ventilation, how can they prepare one and who can act as a witness?

These wishes can be documented by a patient’s GP in the local personalised care and support plan that includes treatment escalation plans or a person can document their own using websites as described above and pass it on to their GP or clinical team to record in their medical records. 

It is possible to include in these advance care plans treatment options that a patient does NOT want, as well as those that they do want for specific settings such as COVID infection. 

Where should ADRTs be kept 

It's helpful for the person, and those involved in their care (for example, care-giver, next of kin and key family members) with the person's consent, to have a copy. If their GP is given a copy they will add this to their medical records and be able to share key information of the person's wishes with key professionals. If a patient passes on their consent for this key information to be shared to local, regional or national shared care record systems, it will increase the chances of their ADRT wishes being visible to clinical teams in a medical emergency.

If a patient is someone with medical conditions that lead to emergency hospital admissions, it is advisable for them to keep a copy of their ADRT or a more generic Wishes statement with a recent copy of their repeat prescription list, a toothbrush, slippers and other necessities in an emergency overnight bag. They may also include recent specialist letters and/or ask their medical team for copies of any relevant care plans.

When should a patient make an ADRT? 

ADRT discussions automatically form part of personalised care and support plan discussions – these are available to support people of all ages. 

There is no specific time or age when clinical teams would ask patients about ADRTs. Upon diagnosis of certain conditions where it is likely a person will lose the ability to make decisions i.e. mental capacity in, for example early dementia, their GP and clinical team may recommend the person, with their family, to consider completing an ADRT.

Support websites for different conditions (Alzheimer’s Society, Parkinson's Disease Association, MND association) and more general planning ahead websites (Marie Curie, AgeUK, Macmillan) support completion of ADRTs, often alongside many other suggestions.

Is there a specific form, what does it look like, and where can it be found?

There are different versions. An example of a national template is the ReSPECT process, led by the Resuscitation Council. This offers a Treatment Escalation Plan (not an ADRT). There are also local versions available.

Examples of public facing options include My DecisionsMy Directives and My Living Will.

Is a DNR notice the same as or included in an advance decision notice?

DNACPR forms for discussion, where relevant, are included in personalised care and support plans and treatment escalation plans. DNACPR is a specific advance decision relating only to whether a patient should receive cardiopulmonary resuscitation following their heart and lungs stopping, for example due to a sudden event such as a heart attack. At the time of this type of event, a person is unable to express their opinion at the time and a DNACPR form acts as a clear statement to help emergency responders such as an ambulance crew.  

ADRTs and Treatment Escalation Plans are for more complex situations, where there is generally more time to make decisions, as will likely be the case with COVID-19.

Update 30 March 2020: Joint statement on advance care planning

Post written by

Dr Catherine Millington-Sanders

Dr Catherine Millington-Sanders is the RCGP and Marie Curie clinical lead for Palliative and End of Life Care.

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