Janine Valentine
Nurse Consultant for Older People at Yeovil Hospital
This column may be the hardest to write so far as I want to talk about the concept of death and dying. I can kind of hear the frantic clicking to close the webpage at the end of that last sentence. To be honest it’s not that I have difficulty writing about such a sensitive subject, not at all, it’s something I feel very strongly about but I know how difficult a topic it is for many people to discuss. In fact even as I mentioned the subject of this month’s column to a friend this week they eyed me nervously and asked why I would want to write about such a ‘morbid topic’. Well, there is some context – this week is Dying Matters Week (9-15 May). I appreciate that there are an awful lot of ‘awareness weeks’ these days and in fact I shall be paying attention to one or two others over the forthcoming months but Dying Matters Week has a very specific intention – to prompt people to talk about death and dying.
I am personally all for this, but then having spent nearly 30 years as a nurse I probably have a different view when it comes to talking about this rather emotive subject. You cannot work in health care and not meet people who have reached the end of their life and it is partly those experiences have enabled me to accept dying as a reality, a part of life and realise that talking about it doesn’t make it any more likely to happen. This acceptance isn’t casual – not in any way, there is no room for complacency in health care about death, believe me. In-fact I would say completely the opposite. When you become familiar with something and learn to talk about it you often develop stronger feelings around it. You also begin to understand that whilst we can’t outrun the process of dying (although I am pretty sure there are people out there striving to achieve just that) you can sometimes positively influence the way it is experienced by both the person at the centre of it and those around them that love and care about them. That may sound strange and I say sometimes because as we all know life has a habit sometimes of dealing the most unexpected cards and it would be insulting not to acknowledge that sudden and unexpected death can affect any of us.
To be honest, that is the message I want to share. None of us know what is around the corner and if we spend our lives never articulating our thoughts and feelings about the end of our own lives we never give those that love us a chance to try to ensure that we are cared for in the way we wish to be. There are lots of things that I think are worth talking about, from decisions about whether we would like to be buried or cremated or which music or poem we would like others to hear at our funeral to arguably more complex matters such as where we would prefer to die if it were possible or in which circumstances we might choose not to receive further treatment.
Easy for me to say this of course, I’ve spent the best part of 30 years working in a hospital of one kind or another. I have had time to form my opinions based on my own experiences and have a very clear idea of what I would or wouldn’t want to happen to me. I’m certainly not advocating detailed conversations about complex scenarios at this point. More: let’s get the ball rolling and start a conversation about death and dying. Talk to our families, the people we love, ask them what is important to them and share with them what is important to us. Within my own family we have had many conversations about dying, about organ donation, funeral wishes – all kinds of things and like most families we have had our share of difficult times. Sometimes those conversations have been essential and there have certainly been times where I have been very grateful they had previously taken place.
When I went away for a month earlier this year I left a letter on my laptop about what I wanted to happen if anything happened to me (just in case anyone dared forget), alongside lots of heartfelt words of love for my family and then I left clear instructions about where to find the letter. To be honest I had done the same thing two years ago when I had to undergo spinal surgery, so the reality is that when something does happen to me my family will be inundated with letters about my wishes and declarations of love. Also, a little bit of ‘don’t drink too much as I will still be watching you’ aimed at my children. I realise that this may make me sound a little too preoccupied with the subject but in all seriousness, I don’t think I should have waited until I was doing something out of the ordinary to write those things down. Even when I did write them it felt rather melodramatic. Having said that, it felt less melodramatic stood in the back of a driverless minibus in Africa, rolling backwards down a mountain (stopped only by a quick thinking fellow passenger, who leant over and pulled the handbrake on - in case you were wondering).
I may choose to take a light-hearted approach to my own situation but I fully appreciate that this topic is an emotive one and can be extremely difficult to broach. However, just something as simple as asking someone what is important to them in life can be a great way to start a conversation. I see many people who are reaching the end of their lives coming into hospital unable to articulate their own wishes. They may be accompanied by family members who want the very best for them but sometimes aren’t sure what that person might actually think is the very best because they have never discussed it. They may very well be an excellent advocate but the simple fact that things have never been discussed can create doubt and that is a huge emotional burden to carry. These things matter, we need to talk to each other, write things down. There are lots of excellent documents available either online or through local agencies which are incredibly informative and sensitively written. They range from comprehensive care planning documents to advice about how to go about legally appointing someone who can make decisions on your behalf in the future – known as a Lasting Power of Attorney.
We tend to think we have all of the time in the world to do all of this and so push it to the back of our minds. I think we sometimes overestimate what we will be able to remember about a person’s wishes and preferences ourselves which is another reason why writing things down can be so valuable. My children may be very aware of what I love right now but perhaps some years down the line this may not be so easy to recall – lucky for them that I will have left so many letters.
I can’t challenge you to share your thoughts and wishes without making it clear that within the hospital we all have a huge part to play in making sure we get things right. If people are brave enough to think and talk about these things in advance, we have a responsibility to do our level best to provide the best care and the best experiences possible at these incredibly difficult times for people. I know that there may be people who will be reading this who have had experiences that have quite simply not been good enough. Once we get things wrong the experience can never be taken back and so we must always strive to do better, until we get it right. I can’t say it any more honestly than that.
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