Do you know you DNR from your PPC or an ACP? We’ve got the terminology covered to help you have a big conversation.
Discussions about dying can be difficult to start – but once you’ve initiated those crucial conversations it can be a weight off your mind. We ask “How do we get ready for end of life? And what do these acronyms mean?
So, from social media accounts to your preferred priorities of care, we take a look at how we can prepare for end of life care, what to ask your nurse / doctor…and what the devil all these things mean.
What is one, have you got one and can you have more than one?
Have you ever wondered what happens to your ‘online life’ after you go? Your online digital assets include online stuff such as your social media accounts, cryptocurrency and online banking details, as well as offline digital assets like files and data on your computer, laptop, tablet or phone. Many of the companies you have online accounts with will have their own legacy policies. For example, Facebook allows you to assign a Legacy Contact. This is a person you trust to look after your account after you die. They can change your profile picture / cover photo, request to remove your account and write a pinned post for your profile. Don’t worry about your messages – your Legacy Contact can’t read your messages, log into your account or remove friend requests. Instagram also has an option for your trusted contact to request to memorialize your account after you pass away. But to close the account they must be able to provide your death certificate. Other social media and email hosting sites such as Pinterest and Yahoo offer a similar service.
However, if you use Gmail then you’ll need to assign an Inactive Account Manager to delete your email account after a certain length of inactivity. But when it comes to Apple’s iCloud and iTunes, the terms and conditions state the accounts are “non-transferable” so, shockingly, no one will have rights to information after the user of the accounts dies!
Online banking and cryptocurrency are dealt with in a different way altogether. This is where a will comes in very handy! You just need to name your executor (the person who deals with all your affairs after you die) and they will be in charge of handling your ‘estate’ (things like property, banking, possessions, vehicles and so on). Your bank accounts actually stay open until all money is taken out – then they’re formally closed. Cryptocurrency can also be passed down in a will – just make sure you leave the passcode otherwise you could end up like Gerald Cotten, owner of Canada’s biggest cryptocurrency exchange, who didn’t leave his passcode to anyone so his $145 million worth of cryptocurrency is locked in a digital wallet. Ouch.
Do Not Resuscitate (DNR)
A DNR order means medical staff can’t attempt CPR on you when your heart has stopped or you’ve stopped breathing. Doctors can actually issue a DNR order whether a patient or their loved ones agree to it or not. This is usually only when the doctor truly believes CPR would be unsuccessful and would damage the patient.
The decision for a DNR order is usually made if you become ill and you’re at risk of stopping breathing or your heart stopping. It’s always wise to have this conversation with healthcare staff as soon as possible, as it can save a lot of stress later down the line.
There are three general instances where DNR orders are issued:
● Benefit vs burden test: You have a consultation with your doctor and you discuss pros and cons of administering CPR. If its highly likely that you’ll be left with a poor quality of life after CPR then the doctor may issue a DNR order.
● CPR won’t work: If the doctor concludes that CPR would be futile, then they will issue a DNR order.
● You issue a DNR: If you have the capacity to make this decision, then you can ask for a DNR order. All healthcare professionals will be told and they will respect your wishes.
A DNR order will be regularly assessed, as your condition may change or your opinion on DNR orders themselves may change.
Advanced Care Planning (ACP)
If you or a loved one has a serious illness then the healthcare staff may initiate a conversation about Advance Care Planning (ACP) with you…or you may decide to ask them about it yourself. This is an opportunity to discuss your wishes after you pass away. For example, you may want to donate your organs or you may want to donate your body to science. You can also choose where you’d like to be cared for – including at home or in a hospice.
Your doctor or nurse will get you to write down your preferences in something called an ‘Advance Statement.’ This is useful if you have any particular wishes for your treatment or care in the future. It’s especially helpful if you can’t make decisions for yourself in the future. You can also refuse certain treatments – this is called an Advance Decision to Refuse Treatment.
Lasting Power of Attorney (LPA)
A Lasting Power of Attorney (LPA) can also be part of your ACP – but anyone can have one! An LPA effectively safeguards your wishes if you are no longer able to make your own decisions – be it from an accident such as a head injury or an illness such as Alzheimer’s.
There are two different types of LPA
Property and Financial Affairs LPA: This is where you assign someone you trust to look after your property, assets and finances if you don’t have the capacity to.
Health and Welfare LPA: This is where you appoint a loved one to make certain decisions on your healthcare, treatments…and even what you eat and what you wear.
Preferred Place of Death (PPD) & Preferred Priorities of Care (PPC)
Preferred Place of Death (PPD) is exactly what it says on the tin – where you would prefer to pass away. Marie Curie found that 71% of people with terminal illnesses preferred to die at home, but 53% died in a hospital. That’s why it’s essential to make sure you let your doctor or nurse know where you’d prefer to die.
The same goes for Preferred Priorities of Care (PPC) – make sure you put aside time to think, discuss and write down the care and treatment you’d like to receive as part of your end of life care plan. Help carers and family to help you, so your wishes can be fulfilled and you can express what’s important to you.
Are You Ready?
We hope that this blog has helped to explain some of the common terminology used when talking about end of life care and dying.
If you are unsure about anything relating to you or your loved ones end of life care, then help is at hand.
Below are some helpful organisations that should be able to point you in the right direction:
1.Dying Matters has a useful information page: https://www.dyingmatters.org/overview/need-support
2. Your local hospice: To find your local hospice, Hospice UK, has a handy finder on their website https://www.hospiceuk.org/about-hospice-care/find-a-hospice
3.NHS UK has an informative part of their website dedicated to end of life care: https://www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/