We recently had a bereavement in our family. An elderly close relative passed away, after 97 years of well lived life in her own terms. It was not Covid related but it was utterly traumatic an Covid made that far worse.
We all reach the time of sunset in our loved ones lives, until it is time for our own sunset.
We knew it would come eventually, after all everyone dies. I will too at some point. And no one knows when it will happen to them or to anyone around them, unless you have a specific diagnosis, and even then ….. No one knows how it might affect them when someone close to them dies either.
I have known many people die in my life and sat with strangers whilst they died when I worked as a hospital chaplain for three years. In almost all cases the end days are a gradual struggle for the breath to continue and a gradual stopping of all signs of life, except hearing and those last stertorous breaths. So be careful what you say in their hearing at least. Even though they cannot respond in normal ways, I have seen a few people in their last hours still change colour (blushing) in direct response to something being said, they hear it and respond to it still.
This relative died in her own home and with family to accompany her alongside the numerous carers and machines necessary to manage her needs. She had been in hospital and it had been a real struggle to get her home again.
It was what she wanted. For the last twenty years she had been saying the following things:
I don’t want to get old and need carers in my own home, I don’t want strangers coming into my home every day. I don’t want to be dependent.
I don’t like hospitals (she repeatedly refused to go into hospital to have cataracts done — the mere thought of hospitals horrified her.)
I don’t want to go into a nursing home
No one was left in any doubt about how she felt on these matters but this time she had fallen and broken a leg and thus hospital was the only option available to us and her. We discovered a few things about the law of the land though.
The medical intervention machine
This is a juggernaut that cannot be stopped it seems. It doesn’t matter how much you say what you want at the end of life, here in the UK your Next of Kin have no rights to any kind of say in how you are treated if you need medical care.
She went in for a broken leg after a middle of the night fall. We had no choice on that one, her preference for being treated at home for all medical issues was not practical so she was taken in an ambulance. And they didn’t let her back out for four weeks, during which time she declined from a lively chatty full of fun 97 yr old into a weak but shrunken husk of her former self, emotionally and spiritually defeated. We suspected this is what would be happening and we could not visit to check up as it was a covid lockdown.
She got pneumonia from a hospital caught infection and then had to undergo various other invasive treatments they deemed necessary for her to be listed as medically optimised, as if she was some machine that had gone in for a service and repair job.
Even though she has an end of life/do not resuscitate form signed which stipulated treatment at home at all costs, they were reluctant to let her come home. We finally achieved it and she died six days later.
Even then we had a last minute fight to stop them taking her back into hospital when it was clear she was declining fast, and it was only when a very scared looking hospital doctor came to her house and my husband showed him her GP confirmed preferences was she allowed to stay at home, even though she was clearly end of life by then. Finally she was allowed to go in peace, her wishes, and ours, were heard.
Someone of that age rarely recovers from a fall and a broken limb. She had also become deeply dehydrated in hospital. They did not have the time to help her to drink and she would not have asked for help.
Her story was to be expected, sad as it was, but we do all die of something in the end. Her injury would have meant a life continued in bed with full care interventions on every level and she would have hated that, though made the best of it, but her sense of personal integrity would have been thoroughly violated by that level of life.
Over the course of the years I knew her for, I had developed increasing respect for her constantly positive outlook even though she was in constant pain from arthritis, her sense of gratitude for the life she had and her determination never to let anyone see that she was down about anything. But once or twice we saw she had been crying and knew it was a huge effort to maintain her jovial face all the time. It was her great sense of personal responsibility and dignity that held her so strong. Being in hospital had defeated that entirely.
The stress for those responsible
The stress we went though in that month was off the scale, not because of the risk to her health by a fall at that age, but by the hospital attitude that life must be a machine pumped and prodded and maintained at all costs, no matter the age and dignity of the individual or their emotional /spiritual beliefs. You have no legal right to protest on behalf of your loved ones, you are made completely aware that the doctors have all the power and they use it without any reference to you as a family member trying to carry out her own expressed wishes to you as a next of kin.
But legally the medical profession are also under huge pressure to keep people alive at all costs and nationally there is an appalling lack of discussion about death and the reality of dying for us all. There seems to be the idea that dying is a bad thing to happen, and it isn’t. It can be very hard for those left behind and that is why we don’t want it to happen, and many are afraid of the idea that they might not exist one day. This needs to be addressed of course, but that is another whole long essay.
Mindfulness as a life essential
We took each day at a time and breathed through them, trying to switch off in between when there was nothing we could do about anything at all. Being in the present moment helps a great deal when facing huge stress and distress and it is usually harder when it is someone else you are trying to help rather than yourself too.
We took solace in hugging meditation often, a wonderful approach recommended by Thich Nhat Hanh. What wonderful mindful moments they were, little joyful spaces amidst the horror of everything else happening.
We also felt deep gratitude for our shared years of studying and talking about Buddhist philosophy, knowing we could find sanctuary in the dharma of impermanence, non-being and compassion. We knew we both had different roles to play for each other too in this situation. We had to take responsibility for our own feelings and make sure we did not add them to the pile of what needed to be managed and coped with.
Support from others
We also learned early on not to share our story with others around us. One or two friends were great - offered a shoulder or ear if we needed it and allowed us to get on with it when we said we needed space more than anything. One or two wanted to ‘be the good friend’ by repeatedly requesting updates, which stopped us from switching off when we could. When asked to stop asking for constant updates, it was not listened to, yet listening is a crucial part of mindfulness practice. It was as if they had a personal investment in our story, even though they had never met our relative. I was told I was unreasonable and not grateful for their friendship. I am developing compassion for their perspective on life, but also need to get away from the events first and allow our own stress levels to return to non existent — there is still much to do and under Covid it is much more challenging.
In the end we managed to get the end of life palliative care she needed by then and waited while she passed. She was my husbands relative so he stayed with her 24 hours a day and watched as the carers came and went, carrying out the essential personal care she still needed.
It was important for her to be at home for those last moments and she was fully aware of where she was just before she chose not to eat or drink or take any more tablets of her own accord. She knew what lay ahead and was rejecting it in the only way she knew how, even though the professionals were all shouting out that she must be pumped full of more drugs etc. and forced to continue living.
A good death
People talk about ‘good deaths’ and even ‘millionaires’ deaths, when we fall asleep and just never wake up again. That can be a huge shock for those left behind though. Deaths are up at present with Covid, so it is a constant reality, and in many cases it is a tragedy since many of those deaths were not necessary under normal circumstances and the usual support for people dying is not possible in hospital or hospices.
Her passing was as peaceful as it could be in those circumstances. We didn’t want her to die, but even more than that, we didn’t want her to suffer. It felt like a gift to her when she finally went, and I believe that is how we should address death, like a long sleep after the end of a long hard day.
Every life matters.
Every life has the value that the individuals place on it them self, and for each of us that is different.
During my own life I have spent many years addressing my own death and am fully reconciled to it. It is the deepest Buddhist teaching to being happy in life — if you fear death you cannot live life to its fullest. If I died tomorrow I would have no regrets as I have honestly done my best in my own life, for myself and for others.
We had contacted our family solicitors in those moments and were told indeed we had no rights for anyone medically unless we made living wills to go alongside our death wills and legally gave each other and a third party power of attorney for medical decisions on our behalf if either or both of us were ever in a similar situation. This we will do next week. We had married on the basis that we believed it gave us next of kin status for each other and we didn’t want anyone else stepping in — we knew we would do what the other wanted not what we wanted.
I would urge everyone to make a living will, a statement of what you want for yourself in the eventuality of your incapacity for what ever reason, but if you are not actually dead yet. Do not resuscitate only applied to heart attacks, not to her condition of pneumonia, yet giving her antibiotics only prolonged her misery for four more weeks. It gave us time to get her back home where she wanted to die but it also meant she was medically abused in that time. I do not want that for myself nor do I want the NHS to waste medical resources on me if I get to that age and in that state. I place far higher value on quality of life that life as existence. As my dear friend Hilary said when she was at the end stages of cancer and in constant breakthrough pain, ‘they wouldn’t treat an animal like this’. They were not allowed to increase her dose of pain meds ‘in case it killed her’ — so she strung out her last few months in breakthrough pain, which was horrendous.
I do not want that for myself if remotely possible and will make sure I am clear about that whilst of sound mind. We will make sure medical power of attorney is in place should it ever be needed, and the law will allow us our wishes above those of the medical profession. They do not and probably will never know how much additional suffering they cause, but we can protect ourselves against that, the law does at least allow us that option.
I deeply respect the medical profession but I think they have got life and death issues wrong. First do no harm can mean forcing life on someone who clearly does not want it any more, stringing people out into far more suffering that nature alone would allow. But I realise that there are huge ethical issues around this whole area, not relevant for this piece.
By having calmly meditated upon our own deaths many times as part of our practice, we have accepted its inevitability and this enables us to deal with it rationally and consciously. This alone is incredibly empowering. Death is nothing to fear, it is a gift, a transition to something else, and that unseen nature of what next is perhaps what scares us most of all, yet we came from that same place at the very beginning of our own unique existence.