Few thoughts on the idea of making statements like the one PP describes on the PoA document…..
‘If I should develop dementia, or any other condition where I’m unable both to care for myself, and speak (with full mental capacity) for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’
The difficulty with that sort of statement though is it’s very very vague in relation to the medical things that people actually present with and a bit of a medico-legal nightmare!
People often don’t present with the catastrophic cardiac arrest that you can make a clear decision not to start CPR for…. and they don’t always have a predictable deterioration and gradual ‘falling asleep’ sort of death. A good example might be if someone with this sort of statement came in having broken their hip (a pretty common presentation in older folk with dementia) ….the natural course of an untreated broken hip realistically is weeks of severe pain, developing pressure sores, worsening confusion etc even with good painkillers. Palliative care for someone with a broken hip who’s expected to survive more than a couple of days usually still involves doing the operation to fix it even if life expectancy is very limited but you can’t do that without short term life-saving/prolonging treatment (anaesthesia). Way back when I was a young HCA (am a grizzly old anaesthetist now) I very vividly remember caring for a woman who didn’t have her hip fracture fixed and it took weeks for her to die…..with a spike of femur threatening to poke through skin more and more each day, and every bed bath/turn/episode of basic care being really painful because pain killers are naff for that sort of injury.
Another example was a woman with dementia who came in choking on a bit of enthusiastically inhaled sausage…. Still able to generate a bit of airflow herself, incredibly distressed and with firmly impacted sausage that was going nowhere with the usual first-aid. Remembering that euthanasia isn’t allowed, would you want to be ‘palliated’ until you completely obstructed your airway or have a smidge of sedation and a bit of respiratory support (ie. life support) while the sedation wore off to retrieve the sausage and head on back to the nursing home only slightly the worse for wear (which is what happened).
Rejecting all live-saving/prolonging treatments might actually bring about a much more unpleasant end than the one people are trying to avoid.
there are some advantages to the slightly woolly phrasing on the ReSPECT forms. It makes a clear statement about cpr but gives a fluffy-looking but actually quite helpful impression of what things someone values most in their own care and a scale of ‘intensity’ of treatments that they’d want that allows the HCPs to make suggestions/decisions that might be better aligned to what a patient actually wants.
these are only 2 medical examples (not uncommon ones) of difficulties these statements make….. then there’s the whole range of issues with the ideas like ‘full capacity’ … people who for example don’t have capacity to manage their own finances might still retain capacity to make medical decisions…or someone who usually has capacity to make decisions develops delirium with a chest infection…then what? And even the idea of ‘speaking’ for oneself can be difficult (if you couldn’t speak but retained capacity and could communicate via other means would you still want input to your care?…)