Dying Matters, Planning for a Good Death - Part Two
In my first blog I talked about what happens when somebody passes away and how care staff care for people as they are dying. It is having the conversations though before somebody passes away, that is the most important thing and often one of the hardest conversations for families. Quite often it is the not knowing where to start and what is the right thing to say without feeling like you are upsetting or offending somebody. I know from having conversations in the past with my family members that they can find the conversations about death and dying particularly difficult and they're not ones they want to have. For some families, however, they are ready to embrace these discussions and pleased that someone is taking the time to talk about these very serious and sensitive issues.
After recently having conversations with my Dad about powers of attorney (POA), he became extremely paranoid and thought that he was going to die, and that I was making plans for that point. It took a fair amount of convincing that actually what I was doing was making sure that his wishes had been known and, as he got older and wasn't able to make the decisions for himself, they were clearly documented.
Planning a ‘Good Death’
So how do you go about asking someone how they want to plan their death? Well, there is several ways that you can do that. Having lead up conversations with the person, preparing them just by asking them simple questions about their likes and dislikes, preferences for music, poems they might like to have read at funerals, knowing religious beliefs, and what might be important to them before they pass and afterwards. I find sometimes the more direct, but still sensitive approach is needed for some people, while others it is more of gentle approach over time. The only way to know which approach to take is to observe body language when approaching the subject and listening to the language that the person uses. I know that from a 5-minute introduction with a person living with dementia how they are likely to react – but that comes with years of experience of being around people.
If you are the person starting the conversation, you need a level of confidence, and the first few times you talk about the end of life and death with people is a real learning curve. As we are all very individual, the way people may react to the conversation will be different and dependant on our mood and feelings at the time. Only you as the person having the conversation will know which approach to take in that time with that one person.
One of the first questions I ask people using the Sage House Daybreaks Service is one that many find difficult to consider. The question “have you thought about being resuscitated?” or “do you have a DNR/DNACPR (do not resuscitate order) in place?” Many people have never thought about being resuscitated and often quite shocked as I explain what this means. This can be a difficult conversation for some people and the level of sensitivity needed is massive as it can make many people cry. It is extremely difficult however to minimise the impact of what happens to the human body when someone is resuscitated, particularly for people who are old. The sound of cracking rib bones is one I have experienced when giving CPR, but worse is the internal damage that can be done especially when somebody is so frail.
I find that some older people want to make these choices and decisions for themselves even with a diagnosis of dementia, it doesn't mean that they are not able to choose what happens to them when they are dying. I supported one gentleman with a diagnosis of dementia who used to be a GP and he knew full well what would happen to him if he needed CPR. Without hesitation when I asked him, he said to me “it's okay I've thought about it and I know how I want to die, you don't need to be afraid of asking me these questions”.
More in-depth conversations, planning and documentation are needed to plan a good death, remembering that everyone as an individual will have their own ideas of what they may or may not want when they are dying and after they have died. It is important that there is no judgement placed on what the person feels is right for them.
Asking people where they want to die, who they do (and do not) want with them when they die. Do they want music playing? Do they want to listen to the sport on the radio or the TV? Asking questions to find out how is just as important as questions about what they want to happen once they have passed away. One lady who I worked with, who is autistic, was extremely frank about death. She talked about it in a very matter of fact way as both her parents had passed away and she had seen her brother when he was terminally ill and then died. When I talked with Laura about what she wanted to happen when she passed, she also had questions for me, which I didn't really have the answers for. She asked me “what happens to me as I die?”, “how will I feel?” and “how will I know when I'm going to finally pass away?”. We were able to explore these questions over time and involve other professionals who could helped her to understand the process and experience of dying. The end-of-life planning that I did with Laura was probably one of the easiest.
For another family that I supported however were more difficult. The discussions were with Simon, a young man in his 50s who Down Syndrome and diagnosed with young onset dementia. Simon’s mother Joan had been told when Simon was only two days old that he would not live long due to having Down Syndrome. Joan said it was particularly difficult having just given birth to her beautiful boy thinking that he would die within days of him starting his life. Joan talked about this frequently and how Simon had always achieved more than the doctors had ever predicted.
Discussions about her son’s death were very difficult, first Joan faced it with denial saying that her son would not die from dementia, that he was too young, that he had plenty more life still to live. She then moved into bargaining saying she would want to die before Simon and finally moved into acceptance that they both needed to plan for his end. I opened the discussion by asking Simon which people are important to him and what things are important within his life now that make him who he is. I asked who he would like with him when he was unwell and finally dying. He said, “after my mum and dad, I want you, and all of the staff and all the people that I live with” and then he began to reel off names of people that he lived with for the past 30 years in his residential home. I explained that it might not be possible to have us all there, but I would endeavour to find a way.
The discussion moved into making decisions about his funeral. What Simon wanted to wear when he was buried, his song choices and much more. Not all of Simon's wishes could be upheld because Simon moved into a care home for the last six months of his life. Simon passed away comfortably in a care home with his mum and Dad at his side and surrounded by photos of all the familiar faces of his friends that he'd lived with for over 30 years and all the staff team who loved and had supported him. He passed listening to a game of football on the radio and I'm sure would have been very pleased with the final score. Simons funeral went as planned, he was dressed in his Chelsea football kit, his coffin painted in the colours of Bognor Regis football club to the Chelsea anthem “blue is the colour”, followed by lots of tea and cake enjoyed by his family, housemates, football friends, and support staff.
The Impact of COVID on a Good Death
More recently with the impact of COVID-19, conversations about death are ones that I have been having on a regular basis with carers. In just one week I learned of the death of three of our Daybreak's members who lived with dementia. For the carers that we are supporting through wayfinding, we find that we are not able to have those conversations about end of life quickly enough. All the plans that people have made are not what they had hoped they would be in their final days before passing.
For one of our Daybreak's members, Martin, his decline in health was extremely sudden and combined with having COVID-19, the conversations of end-of-life care for him were undertaken by the hospital. Only 18 months before I was privileged to be a witness at Sheila and Martin’s wedding, having lived together for 49 years they finally decided it was time for them to declare their love to each other. Sage House was able to share their love and celebrate such a wonderful occasion. With sadness and a heavy heart, I felt honoured to read a tribute at Martin’s funeral.
Martin’s wife Sheila, a very pragmatic lady, told me after Martin had died that she “could not praise enough the kindness and care and compassion of the doctors, nurses and healthcare assistants who looked after Martin in his final days”. Having never considered what would have been a ‘good death’ for Martin, she felt that having been able to be at his side would have been the only thing that he would have wanted and the decision of where he died may not have been one he was particularly worried about.
The Wayfinders have supported family carers, care homes and care home staff who have been dealing with a very difficult subject of death through COVID-19. I don't know how many times I've heard the words it has been an ‘unprecedented year’, but it really feels that COVID-19 has had a huge impact on being able to enable what should be a ‘good death'.
Conversations about death, dying, end of life are extremely important, and the conversations that I hope become less taboo overtime. Understanding and embracing death is just as important as it is to embrace life. Supporting someone to live well with dementia is just as important as it is to support them to die well. Being prepared to be bold and to have those difficult conversations with people living with dementia and their families must be part of the full care and support that they receive. I've had those difficult conversations with my dad, my husband, and my friends. I've talked about what I would like to happen to me when I die, and even though I joke that I'm not really that bothered because I'll be dead, they know that I would like to be cremated and for my ashes to be buried in the grave of my grandparents.
Have you ever stopped and thought about how do you want to die? What would make a ‘good death’ for you or for your loved one? Have you had those conversations about what you want to happen to yourself once you've died? Because if you haven’t, I urge you to talk about it because dying well matters.
Dedicated to Martin Hopton (11.11.39 – 6.2.2021) and to the amazing teams of staff at Saint Richard's Hospital, Chichester, who day after day are facing death and supporting people to die with dignity.