Self-isolating and staying safe? This is the PERFECT time to get your advance planning sorted!
Updated: Sep 29, 2020
Today Gentle Reader, I invite you to help me get advance planning trending as a high-priority self-isolation activity. Let's go!
We are in times of rapid flux and change, however there are some consistent aspects of the COVID-19 pandemic. We are asked to be kind, to keep social distance, and when appropriate we self-isolate to contain the spread of infection. There are myriad Tik-Tok clips of home gym activities, songs to wash your hands to (20 seconds is the recommended time), and craft activities. One thing I am not seeing though, is end of life advance planning... This is an issue because without explicit instructions and relevant paperwork we increase stress and work for those around us - including the (usually) total strangers who work in hospital emergency departments. Are you happy to have complete strangers making life and death (literally) decisions for you? Have you thought about what would happen to your family, pets, and 'stuff' (including your sex stash) when you die? Do you have a will, Enduring Guardian, Enduring Power of Attorney, and an Advance Care Directive (ACD) in place? If the answer to this last question is 'yes', then feel free to stop reading if you prefer to, and go have some tea. There is a lovely short video of Queen Margrethe of Denmark making novelty hats that is fun to watch, if you are short of viewing inspiration.
"BUT! I'M ONLY [insert age]!!", I hear you cry. "I DON'T NEED THIS YET, BECAUSE I'M TOO YOUNG TO DIE!!"
Actually, you are rather entertainingly and worryingly wrong about age being related to death or accident, and this is why advance planning needs to become a true priority for all of us again. Dedicated Gentle Readers know that I have posted a good deal about advance planning as an essential aspect of end of life considerations in the past, and that I am a passionate advocate for making advance planning as part of Death Literacy and Death Positivity a social norm again. I am vocal about advance planning because we do have a cultural and social myth about all of us dying 'old' - in fact, we don't. Drunk drivers, strokes, sudden illness, heart attacks, aggressive cancers - to name just a few potential causes of death or incapacity - can all occur at any time in our life.
Advance planning is for EVERYONE, at any age - yes, that means you can have this conversation with your children, using age-appropriate language naturally, and all family members need to be involved. If you have friends who are social orphans, sit down and have the conversation with them, too, if it is at all possible. Inclusion matters when our voice cannot be heard and the more we talk about advance planning the faster it will become a normal part of our lives in general.
Today we am going to discuss the Advance Care Directive/Plan (ACD/P) as a document to get sorted. And, since you have the luxury of uninterrupted time right now with COVID-19 restrictions on movement and social contact, you can sort out your ACD as a solid and reasonable plan immediately. You ACD may take a few goes around to get right, so make some tea, grab a nice snack and settle in for some solid self-reflection. You need to be honest with yourself about what really matters to you, and what you really want in terms of care, quality of life, and resuscitation options. Don't worry if you take a day or two to get your ACD written to your own satisfaction - I normally plan about 4 hours of time with clients to get this document right, and taking a day or two can be helpful for personal clarity when you drill down into some of the health details.
What is an Advanced Care Directive/Plan, and what's so important about this document??
An ACD/P is the document that offers a guide to your wishes, preferences, choices, and absolute hard limits in terms of your medical care should you be unconscious, gravely injured or ill, unconscious due to accident or in a medically-induced coma, and for any other circumstance where medical decisions need to be made for you without your own immediate input. This last can include the questions around life support and your position concerning Do Not Resuscitate (DNR) instructions.
DNR is important to think about in some detail as medical technology has come a long way in terms of cardiac care. To give you a common example, let's consider heart attacks, or 'cardiac infarction' episodes. A few decades ago a much higher number of people died from cardiac infarct - with stents, medication, and improvements to biomedical technologies we now see more people surviving initial cardiac episodes because we can address the underlying cause effectively. We no longer expect someone to die from a second, much stronger cardiac infarct when a first episode occurs and we live through it. Your DNR considerations therefore may be concerned with physical and cognition capacity - do you want to be alive if you cannot care for your body/person at all due to paralysis? If you don't recognise anyone anymore due to cognitive damage, do you want to be revived? How do you feel about being peg fed? What is your position on full bodily paralysis? Partial paralysis? Would you like to be at home if at all possible? These are all questions to consider when writing your ACD.
In other words, ACDs are designed to help your Responsible Person - the person you designate as your 'voice' - in terms of working with doctors and health care staff make decisions about your quality of life and treatment when you cannot speak for yourself. In some places this document is a legally-binding one, in others it is more of a guide, but in any serious and/or emergency medical situation this is the best way forward to try and ensure your personal wishes are taken into consideration.
One of the best reasons for making your wishes and decisions known in writing is that it can save a good deal of effort and money in the long run. Don't forget doctors are always mindful of lawsuits, so they will act to preserve your life under any circumstance, even when the people close to you may consider a different approach would be your own choice. When ACDs are in place, heroic medical interventions are minimised, which saves the system a good deal of money, and re-directs medical staff time towards other priority cases. Having everything in writing also takes the strain and guesswork out of the hands of your dearest people (or the people you are most closely related to biologically. These are not always the same thing...) and helps them cope in emergency situations more effectively.
How much information is enough in an ACD?
This is a bit of a 'how long is a piece of string?'-style question, and the answer for me is that it really depends on individual priorities and needs. Honestly, I have seen blank ACD forms vary in size from 2-60 pages, so there is a LOT of leeway in how you write these up. A sensible place to start is looking at your local health system's website - there are often forms that you can download and print out to use. Don't forget that you can also add pages, or you can create your own from scratch if that is an idea that appeals. I routinely add extra pages to a standard form when working with clients; this ensures that important aspects of quality of life are noted and included. Often this might pertain to pets - "It is essential to me that my dog visits every day if I am in care" is a phrase I see commonly included, for example.
Right now I live in NSW, an Australian state, and health care is state-based in this country. Therefore I use the NSW Health ACD form and attach the extra pages at the back for specific information and details important to my clients. The NSW Health logo on the front page means that health staff take the document seriously - and I always have my client's GP sign off the document. As I am a JP I also witness their signatures on the completed ACD, which adds considerable weight to the document overall. If you are lucky you will live in a place where ACDs are legally binding, but at this point in time ACDs are often not legally-binding, so the additional signatures ect. work to support the gravitas of the plan. Happily, as death literacy increases, more and more hospitals and health providers take ACDs seriously and act on them accordingly when making decisions.
It is vital to always bear in mind that this ACD is about YOU and what you find important in life, so please do not be concerned or swayed if someone in your life is made uncomfortable. They can have their own ACD with a different set of outcomes and priorities - as they should - but they do not get a say in what gets written down in yours. This is NOT a one-size-fits-all exercise.
What is a Responsible Person and do I have to be related to them?
A Responsible Person is the person nominated in your ACD to be your voice if you are unable to speak for yourself and your life/quality of life need to be actioned. Your Responsible Person will make decisions in your stead and advocate for your choices - for example if you do not wish to be on life support for any reason whatsoever, then your Responsible Person can refuse life support interventions in the hospital for you. If there is a choice between rehab at home or rehab in the hospital, and your ACD states that you wish to be at home, your Responsible Person will advocate for this option as the preferred and most desirable outcome.
No, you do not have to be related to your Responsible Person, but you do need the ACD in order to have anyone act in a role of advocate and proxy 'voice' for you. Without an ACD, advocacy can be quite difficult as the medical team will step in to take decisions, and determinations may be made that run genuinely counter to the verbally-expressed wishes of someone who does not have a voice. Alternatively, 'important family member/s' will be automatically given this role, and when there has been a ruction in the family this role may be used to cause harm to a person in need of support. Important family members in cases like this will be the parents, or siblings when parents are dead or unavailable.
Members of a family of origin may be the last people we want advocating for us however, and this can mean that decisions will not be made in the our best interests at all. For example: a trans person without an ACD may find the family of origin insists on mis-gendering, mis-naming, and denying medication that a trans person may be reliant on for their own health and wellbeing. In cases where individual choice and identity are not in line with family ideas and mores, having an ACD can be one of the most important aspects of ensuring the most appropriate care and decisions are made for the person who does not have a voice. A deeply religious family may refuse visits from a same-sex partner or polyamorous partners, cutting off all access to information and health status, which can be deeply painful and distressing for those outside the family of origin.
Clearly, it is therefore also important to ensure that your nominated Responsible Person or person of authority (titles for this role vary, but the role is the same) will follow your instructions. Select this person wisely. For example, I may not agree with all of the directions in my mother's ACD, but I will follow them to the letter - because I understand and respect that her choices have nothing to do with me. However, there are probably some people you are close to in your life who will ignore or over-ride your wishes because they don't agree with your choice or position. So I urge you to be quite pragmatic when it comes to approaching someone to be your Responsible Person and of course have your full and frank conversations about what the role entails and what your wishes are. If you approach someone and they don't want the role, please do not pester them about it, but respect their wishes. Ask someone else - after all, you will review this document regularly (one a year is a good rule of thumb) and the person who initially says no may change their mind later on. You can always adapt and update your ACD at any time. Make sure your Responsible Person knows where you store this document and give them a copy if possible. A good rule of thumb is to give your GP a copy, take a copy to the hospital when you are transported (if practicable), and give your Responsible Person a copy that they can bring in to the hospital if needed.
Advance Planning Pro Tip: Keep all your end of life documents together in one folder, and make sure the folder is easily found/visible. Some people like to keep them on the fridge (get a big plastic pocket and some magnets), or in the freezer. If you have a prominent and unlocked drawer or filing cabinet in your office/library/workspace then label the area that has this folder in big, easy to read letters. Tell your Responsible Person where the document is located and DO NOT MOVE IT!
Advance planning is an act of love and kindness. Be kind to yourself and those close to you - do your advance planning today. If you would like support and guidance while you do your planning please email me at firstname.lastname@example.org for an appointment. I am an End of Life Consultant who specialises in advance planning and supporting open, genuine discussion around your planning options and choices. Let's talk.