08/04/2025
This is an old post from 2020 - thankfully the mention of COVID-19 is less applicable now. The rest is wise and relevant advice and worth a few of minutes of your time to read.
🍁 During there's been a lot of discussion in the media about Advance Care Planning (ACP). I am worried that there's lots of mis-information. Let's think about what ACP is, and what an opportunity it offers us all.
🍁 ACP is about looking ahead with a combination of realistic expectations and hope.
🍁 Realistic? If we're lucky, we'll survive to grow old before we die. Some of us won't live into old age; an illness will declare itself that will eventually kill us. Others of us will die unexpectedly. The thing is: right now most of us don't know what lies ahead. But we all know we are mortal.
🍁 All of us can with friends and family about our preferences towards the end of life. Some of us don't yet have any idea what health challenges we may face in the future, but we can make hypothetical plans. Some of us already know what health conditions we have to deal with. Our medical advisers can help us to make plans for some of the situations we may well face in the future because of those conditions.
🍁 Hope? Research shows that those of us who choose to plan ahead are more likely to live where we hope to live over the last part of our lives. We are less likely to have treatments we don't want. Our beloveds are not taken by surprise when asked about our preferences. We can plan our farewells; we can express preferences about our funeral (I know we won't be there, but beloveds find it so helpful in those early days of bereavement).
🍁 But ACP isn't only about dying and death. Really, it's about living. It's about what matters to us as individuals. It's about deciding whether we want to prioritise living as long as possible, and the goals we would like to achieve, or whether our priority is to live as comfortably as possible and be less concerned about length of life. Either view is fine: it's your life! We can hope to live by our own values by planning for foreseeable challenges. ACP is about living on our terms.
🍁 So ask yourself as you ponder your future health challenges or simply ageing: What's your best hope? And what's your worst dread? Congratulations: you just started your own advance care planning.
🍁 Now you've set your goal of length of living or quality of life, what can be put in place now to enhance and maintain your quality of life? Can you envisage any circumstances that might make you change your goals? Where would you set the balance between length of life and comfort/quality of living?
🍁 Who will advise and support you? Think about personal support from trusted beloveds who have your wellbeing in mind. Think about trusted medical advisers who will give you honest information even if it's hard to hear. Think about rights advisers who will ensure you receive fair consideration. Think about spiritual advisers who will help you address your spiritual longings and worries. Think about psychological advisers who will give you tools to maintain your emotional calm.
🍁 What do you need to find out? Consider the likely direction of your future health: how will it affect your independence, mobility, thinking, ability to do things you love? Are there any predictable health emergencies associated with any condition you have? What are the options for dealing with those? What are the options for your treatment as your health deteriorates, or for care as you need more help? Can these happen at home? Would you want that? Can you choose how care is delivered? Are there any treatment options you don't like? What would happen if you declined those?
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🍁 If you had to choose between maintaining your independence at home with modifications to your house and carers visiting regularly, or moving to somewhere that provides care, which would you prefer?
🍁If you discovered that you needed lots of treatment in hospital to keep you alive, would you accept the treatment? Or would you prefer less treatment even if it meant you didn't live as long? This is a deeply personal decision. Who could advise you?
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🍁If you become too unwell to speak up for your wishes, is there someone (or several) you trust to speak on your behalf? What legal steps are required to give them that authority? Remember: unless you make it legally binding, in many states other people cannot speak for you.
🍁Would you like to make a record of your wishes and preferences that friends, family, medical advisers can refer to in the future? It could be an informal 'wish list.' It could be a legally-binding advance directive. You can make both.
🍁Towards the end of life, there may be symptoms of whatever illness is affecting our health. It's usually possible to manage symptoms, to stop them causing distress and to allow us to carry on enjoying life. Sometimes, though, the medications that manage our symptoms can cause drowsiness. If you needed to choose between feeling comfortable but being drowsy or being more awake but having discomfort, what balance would you choose? And would anything make you change that balance?
🍁 Are there any medical interventions you would prefer to avoid? This might include blood transfusions, surgery, some or any admissions to hospital, use of a ventilator, use of CPR. Some options may never be needed. Others may be more likely, depending on your health condition. Or you might want to accept any treatment you're offered. It's up to you. Who can advise you about this?
🍁It's a good idea to discuss treatments you don't want with your beloveds, too, so they don't get a shock when they discover the decisions you've made. They don't have to agree with you. It's your decision.
🍁This process of getting relevant, personal health information and pondering on the options to sketch out a plan can (should!) be repeated from time to time as we get older or as our health condition changes. We can modify. We can change our mind completely. It's our choice to decline any treatment we don't want (but we can't demand a treatment that's not appropriate for our condition).
🍁So that's Advance Care Planning. It's looking ahead with hope. It's deciding what's important for me. It's as individual as we are.
🍁The process takes time, thought and trustworthy support. There are no right or wrong answers.
🍁Let's take charge of the balance between our best hope and our worst dread. Let's chat to our beloveds, make an appointment to talk to our doctor or specialist nurse. Let's make a personal plan of the way we want to live as health challenges or aging change our fitness.
🍁Advance Care Planning is a little bit about dying. But it's so much more than that. It's about living until we die, with our values and preferences at the centre of all decisions. Which seems to me to be an excellent plan.
