The idea of ‘death plans’ may seem less commonplace than the birth plans produced in so many pregnancies. But at least some aspects of death plans can be legally binding. As always with anything legal, the devil in the detail. And the wording can feel confusing.
I’m shortly going to meet a midwife and I know we will talk about birth plans. Here, then, is a version of something I wrote for Pulse.
Lawyers and doctors don’t talk about death plans – but ‘advance directives’. Advance directives include Advance Statements and Advance Decisions.
Advance Statements are not legally binding, but should always be considered by medical staff
In contrast, Advance Decisions to refuse treatment are legally binding and MUST be followed by medical staff, IF they are valid and applicable. As discussed below, that’s a big IF.
If an Advance Decision refers to potentially life-sustaining treatment, it must must be witnessed, signed and dated.
The details are the big thing here:
- If the patient didn’t fully understand the consequences of their decision, the clinicians caring for them might conclude the Advance Decision is not valid. There’s lots of room for condescension here!
- If the patient did or said anything that contradicts the Advance Decision, it might not be considered valid. For example, a patient might have said they wanted comfort measures, rather than trying for a cure, but then accepted antibiotics for a urine infection. This would probably help with symptoms (comfort), but is it really aiming at a cure?
- If the patient did not anticipate this exact clinical situation within this illness trajectory (how fast or slow the person is getting sick / well) the clinicians might decide the Advance Decision is not applicable. This is another get-out situation: who can anticipate everything?
Advance Decisions are probably most useful for refusing specific interventions like CPR or ventilation and so-called ‘life support’ machines. (I’ve written ‘so-called’ here, as sometimes – just sometimes – all the machines don’t actually support life, but just drag out deaths.)
Even if all the details above are OK, it’s important that Advance Decisions are kept up to date. It’s a good idea to review, re-sign and re-date them whenever clinical and other circumstances change, or every two years if everything is stable. This is so that the doctors treating the patient can be confident that they are following their current wishes.
If you want to set up an Advance Decision, the free My Decisions website https://mydecisions.org.uk will take you through some questions and scenarios to get you thinking about what’s important to you. At the end it will generate a legal document.
A lasting power of attorney (LPA) can be set up by an individual (the ‘donor’) to give an agreed Attorney the legal power to make decisions on behalf of that ‘donor’.
LPA can apply to property and financial affairs; or to health and welfare; or both, if both are set up:
- In an LPA for health and welfare, a person must specify whether their attorney can make decisions about life-sustaining treatment on their behalf.
- LPA for health and welfare only come into effect when the patient no longer has capacity to make their own decisions, while financial LPA can start whenever the ‘donor’ chooses.
- For LPA, there needs to have been full discussion between a patient and their attorney, to truly know what the patient would want.
More details about LPA, including about the £110 fee (unless the donor is on certain benefits or earns less than £12000 a year) is at https://www.gov.uk/power-of-attorney/
Advance Statements are general statements about anything that is important to someone in relation to their future treatment and wellbeing.
They are sometimes called a Statement of Wishes, and are really more Life Plans than Death Plans. They can be used to detail any values or beliefs that inform your decisions or to express preferences for care (for example, hospital or home, male or female carers, specific religious preferences, shower or bath, Aunt Jemima or no Aunt Jemima .. down to Marmite or no Marmite). They are used only when you cant speak for yourself. If you have what’s called ‘capacity’ — the ability to make and communicate decisions — your expressed wishes come first.
None of these instruments gives anyone the right to demand any specific treatments.
Any individual with capacity can set up any or all of these methods of advance care planning. You can have an Advance Directive to refuse something, and an Advance Statement to say you would (or wouldn’t) like something else.
With all these imponderables, for all these ‘instruments’, the discussions may often be even more important than any individual document.
That’s especially true if the process and results are written down. Even if they are initially difficult, explicit discussions mean that families and loved ones know what a patient wants. This is often not what others think, even with close and loving relationships. For example, I have LPA for my mum, and although she said she was sure I knew her well, when I insisted on a discussion, I was really surprised by some of the things she said she didn’t want! These discussions can be much more about Life Plans than Death Plans.
People’s circumstances vary. However, the Alzheimers Society suggest that individuals and families consider LPA after a dementia diagnosis, and to do sooner whilst the person has capacity. This is something GPs can also encourage.
Want help? Online or downloadable Advance Decision and also Advance Statement forms and guidance are here, and there is a freephone information line at 0800 999 2434.