Blog End of life care

5 lessons in death and dying you need to know, from a retiring hospice leader of 25 years

Jasmine Cotton
Jasmine Cotton

Before she retired last month, we asked our retiring Chief Executive, Alison Moorey, to share with us the lessons she has learnt from her experience in working in a hospice. Death and dying can be a subject that we don’t want to think about, let alone talk about, but after 25 years of working with people with life limiting and terminal illness, Alison has given us the real facts that she wants everyone to know

I’ve worked in palliative and end of life care since 1990, and I was drawn into this work after some time working in cancer care. I met some patients who were being actively treated when perhaps if they had the opportunity to have some honest discussions about their future they might have made different decisions. I could see that working in end of life care could be more rewarding and fulfilling so I joined the team at Countess Mountbatten in Southampton where I worked for seven years before having the honour to start working at St Wilfrid’s Hospice in 1997.

I don’t have all the answers (who does?) but over the last 33 years, I have had the absolute privilege of meeting many people facing the end of their lives, as well as their loved ones. I have also had the gift of working alongside so many staff and volunteers who share my passion and dedication for supporting people at this time in their lives. These are some of the lessons I have learnt, thanks to every person who has been a teacher to me along the way:

1. We are all going to die

Although we are faced with images of death and dying day-in-day-out on the news, somehow we can tend to live in denial – the two undeniable facts about life are we live and we will die. The years in between are a matter of what we make of it and each day is a gift.

It really does make sense to plan ahead – make your Will (in the UK only 40% of adults have done this, yet 100% of them will die), and talk to your loved ones about your wishes (we can all think of a special song we’d like to be played at our funeral!). Sadly some people do die unexpectedly so it makes such a difference if your loved ones know your wishes. 

2. Dying isn’t as bad as we think

I have seen many people die in peace and have some very special experiences in the weeks and days before then. Over recent years I have shared this video with many people, as I love the way that Kathryn talks about the process of dying and helps to reduce the fear many have Kathryn Mannix: Dying is not as bad as you think – BBC Ideas.

Kathryn has been at the forefront of a movement to encourage conversations about death and dying and to encourage everyone to make plans and talk to their loved ones. All the evidence shows us that if people make plans for the end of life and talk to their loved ones about their wishes, they are more likely to die where they want to be and to have the treatment and care they wish for. 

3. We are all living our lives differently

It stands to reason that we are all individuals, we live our lives in our own ways so we will all approach the end of our lives differently. In hospice care, our work is focused on conversations about what matters most to our patients, and doing everything we can to make that happen. For most people that won’t be about medicines or treatments but it may well be about seeing a much-loved pet (and knowing who will care for them after you have died), placing a last bet on the horses, or saying goodbye to loved ones. We can’t guess any of this unless we ask the question, as perhaps no one else has asked.

4. We don’t always get everything right

Every day is a school day! We are learning all the time and part of this is understanding that we won’t always get it right and we do make mistakes, and we are all human. We all need to be kind to ourselves and know that often we are doing our best but sometimes we will get things wrong, yet we can always learn from these moments in life. Those who are bereaved often experience people avoiding them and saying nothing about their loved ones or their grief.

We can all help people we know who have experienced a death of a loved one by talking about it, doing something to help and just being there to listen. This makes such a difference and it is better to know you are supporting someone than to avoid having the conversation because you are afraid of upsetting them (or yourself) or saying the wrong thing. 

5. Language matters

It is much better to be direct when talking about death and dying if we can. It does help to be honest and straightforward – especially when talking to children who can become quite afraid if they are told that someone who has died has ‘gone to sleep’. People with learning disabilities or dementia will also struggle to understand language that isn’t straightforward.

Similarly, there are many people who find the use of ‘battle language’ when facing cancer difficult to deal with and can give people who are dying a sense that they have failed. Being straightforward and saying someone is ‘living with cancer’/ ‘living with dementia’ is often better. All of this said it is up to the individual to decide what they want to say about their illness.

Dying is an inevitable part of life. It might not be within our control, but thinking ahead and talking openly with our loved ones can lessen fear and allow us to experience death and dying as we might hope to. 

 

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