Psychotherapist Jane Rogers is the founder of Before I Go Solutions, a non-profit that provides accredited training to become an end-of-life plan facilitator, and also helps individuals make their own end-of-life plans. She started the company as a result of readers’ response to a chapter in one of her books where she asked her husband difficult questions before his death. To mark Dying Matters Awareness Week and this year’s theme Dying To Be Heard, she tells ehospice what people need to consider when planning for the end of life, particularly now in the time of coronavirus.
Talk to people – even more necessary during this time of coronavirus
This is something we do not usually want to do, even many professionals have not been totally at ease either talking to others about their end of life, or talking about their own. It is a bit like the builder who builds wonderful houses for everybody else but actually does not live in such a great house himself. But we do need to talk to anybody who is going to be affected by your death – family members, children, other relatives, friends, colleagues, your carers or other medical professionals. Basically, you can talk to anybody about it, at work, at your church, at your social group. It does not have to be family; sometimes it is easier to talk about a subject like this with people who are not so close to you.”
Especially now, when doctors are pleading with us to start a conversation about how we would want to be treated should we contract coronavirus, it is crucial that we take action on this. Why? Because if we end up in a hospital, unable to speak for ourselves because of breathing difficulties, the doctors will make a decision about what treatment we should receive, regardless of what we might have wanted for ourselves – or indeed not wanted.
For instance, if you don’t want to be put on a ventilator (assuming there is one available) that is very useful information for the medics to have. Equally, if you are really clear you want every kind of treatment possible, that is also very helpful for them – and for your family – to know. We need to be able to talk about dying, bereavement and end of life in the same way we talk about anything.
Get it written down (Advance Statement for Coronavirus)
The next thing is to get your thoughts written down. Make the decisions about the treatment, and then write them down. Sounds easy, but many find it almost impossible to make a decision. That’s where discussing it with someone else (a family member, or in a forum, or on a course like the ones Before I Go Solutions offers) can be so beneficial.
If you’ve never done anything like this before, then starting with a coronavirus Advance Statement is an excellent place to begin.
That may lead you onto a full Advance Care Plan, where you include your Advance Directive (the treatment you do not want towards the end of your life), and if necessary, your DNR (Do Not Resuscitate) order. All of these documents need to be in place in order for you to maximise your chances of getting the treatment you want (or don’t want) towards the end of your life, whether that be from coronavirus or from any other cause. This may sound blunt, but the fact of the matter is, we are all going to die at some point. That’s part of the deal when you get born, and just as we plan for the best birth possible, we can also plan for the best death (even while knowing we don’t ultimately have control over this).
How to make a good end of life plan
The above Directive and Statement are just one part of a full end-of-life plan, and I have outlined the several components to a good end of life plan here.
There is a section called ‘household’, useful if you are going to be leaving behind a widow or widower – do they know how your house runs, how to organise it and how to operate particular machines? It sounds mad but it is little things like these that can really affect people and that affected me after my husband died.
This section also includes decluttering and “death cleaning”, which means decluttering at the end of your life. My mum died recently, she knew she had a terminal illness, and in what turned out to be her final year she was busy sorting through things and giving what she could not use anymore to members of the family. It was lovely at the time, but it has also been really helpful afterwards.
Other areas are your funeral organisation (different from a funeral plan, and assuming you want one at all), your digital life, and your living legacy, not to mention your finances. These areas all need to be shared with people, talked about, and be put in writing so you have a really good end of life plan that has covered everything and truly brings you and your family peace of mind.
A note about funerals – these are very different now, as we have learnt. Understanding that the process of body disposal can be entirely separate from the ritual of saying goodbye to someone is something we will all have to get used to.
Making a will
Having an up-to-date will is really important because it saves so much time, trouble and expense afterwards. When people think about that, especially how it is going to affect the amount of money they are able to leave family or friends, that’s usually a wake up call, because lots of people think it is a good idea to have a will but have not actually got around to doing it. Although I gather the percentage of those applying for wills in these last few months has increased in some cases by as much as 400 per cent.
People often ask if they can do it themselves, and the answer is yes but I do not recommend that because people don’t know what they don’t know, and that is what causes trouble further down the road. If people want to save on cost then in the UK they can go to WH Smiths online and buy a will pack, and if they complete that then they know they will be getting it right. Or search your favourite charity, and see if they offer a free will-making service, with an option to make a bequest to them in your will.
On the whole I recommend people go to a lawyer. And if you get it done in one of the months when it is a designated will month, the money goes to a charity.
For more information visit Before I Go Solutions for online courses, training information, and Jane’s book Before I Go:The Essential Guide to Creating a Good End of Life Plan
Dying Matters Awareness Week runs until May 17.