What really matters at the end of our life!
And why we need to plan it today.
‘You matter because you are, and you matter to the last moment of your life.’ — Dame Cicely Saunders, Founder of the Hospice movement.
Let’s be realistic. Most developed countries will soon be facing a ‘silver wave’ like we never experienced before. Dr. Peter Saul, an intensive care specialist, reminds us in his Ted Talk about Dying, how this will result in more people living with a chronic or terminal illness.
‘Our life matters but how we end our life matters in a major way for our loved ones because they will always remember it’, argues Dr. Saul. ‘The way we die should be chosen by us, planned by us, and reflect the life that we had and what we valued in our life’, he adds in hisTed Talk.
Some people die peacefully, in total acceptance of the process, and others struggle tremendously with the process, physically and emotionally.
My mom passed away on May 1st this year. Her death was painful, terrifying, and even difficult in the eyes of the nurses and doctors, who authorized all the extraordinary measures possible, to soothe her, within the limits of the law. I felt frustrated and angry by these limitations while I saw her suffering, and as her sufferings were reflected in me.
Seeing her in such a fragile and painful state for days, in the end, stuck in a bed without any pleasure, was, I believe, unnecessary and cruel for her and her loved ones. When it comes to our animals, we all agree — and the law does too — to release them from their sufferings, and we call it an act of compassion. But when it comes to humans, to our loved ones, we to go through what feels like torture, in the end, a non-stop suspense— which lasted days in my mom’s case — of waiting for the last breath.
I remember crying loudly — almost yelling — in my mom’s room while I was looking at her struggling to breathe and possibly suffocating. We knew she was going to die and that nothing else could be done, but you don’t wish for this kind of ending for sure. I remember begging doctors and nurses: ‘please do something, help her, please put an end to her sufferings’. The reply I got by the doctor was cold and formal: ‘does she have a biological will? Maybe you want to end your own sufferings, maybe not hers’. That answer was a terrible one. I thought the process of death was completely inhumane and unnecessary for all parties involved. We knew it was a question of hours or perhaps a couple of days. Why did we have to go through this torture, why did she have to go through this?
This traumatic and negative experience of death made me realize everything one really needs at the end of their life, i.e. love, compassion, and the comforting presence of being surrounded by your loved ones at home — something I wish I could have offered her-, but more importantly, I realized how important one needs to prepare for the end, possibly through a biological will.
My mom’s death was a lot of things it shouldn’t have been, not only because she hadn’t planned what would happen in the event that doctors couldn’t do relieve her from her sufferings anymore, but mainly because death in the Western world is still a very cold and clinical process.
My mom’s physical symptoms were graciously taken care of most of the time, but what about her mind, her heart, her soul? What about helping her grieve and accept death with grace? What about encouraging her to live to the fullest until the very last second?
Death in the Western world is truly disconnected from our true nature as a human being, and the person we have been all our life. The system doesn’t allow the patient nor the family to go through death peacefully and gracefully, especially when the patient struggles to accept death or even fear it.
Through this extremely painful process, I learned that planning our death is not only possible legally here in Quebec, but more importantly, an essential part of the process for our well-being and the well-being of our loved ones at the end.
In the province of Quebec, Canada, it is now possible under certain legal conditions to ask for an assisted death, when doctors can’t relieve a patient from their sufferings anymore. The government has recently eased the process since the restrictions were so complex that it made it almost impossible to ask for.
Before my mom became unconscious — according to the doctors -, I started doing research on how and when one can ask for an assisted death. Our intuition is always present, but we often ignore it. I did. I still struggle to this day to live with the regret of ignoring it.
My mom didn’t accept the process of death; she even seemed to be angry about it. Never did she smile once in the palliative care home. My intuition certainly felt what would come next. Yet, my brain stopped me. Many of us are so terrified of death that we would rather not talk about it.
My mom didn’t say much in the end. Yet, I remember her saying: ‘I wish I would have the strength to cry’. She was most probably too tired of suffering after years of battling cancer and conflict within the family, until the end.
My mom had been battling cancer for five years on and off. Before being sent in a palliative care home, she was peaceful, accepting of her illness, even when it affected greatly her quality of life. She was, loving, accepting of others, forgiving; she had accepted her fate and the fact that her illness had been progressing. She was receiving in-home treatments — free of course thanks to our public system-, something she was grateful for. The last time I visited her at her condo, she was extremely weak and her facial expression had changed drastically; maybe it was the physical pain she felt, maybe it was anger, or perhaps despair and all of the above; and even possibly not wanting to leave a life that had finally become peaceful and loving with me and my dog she loved so much, after years of conflict between us since my early childhood.
She had lost her mom when she was five, a traumatic and sudden loss that shaped her for the rest of her life; after the shock of the announcement, she had to go back to school and go on with her life. She had to bury her pain in order to survive. She most probably feared death since that day, like her sisters and brother, some who were so afraid of death that they refrained to visit her in the end, making her death even more painful emotionally.
Let’s be honest for a moment! Many of us — including myself — have what is called paraphilia, or the fear of death. Might it be because we never talk about it or because we are afraid of what it will feel like, of how we will suffer physically and emotionally? The majority of us avoid it because we don’t want it to happen. Yet, it is part of our fate. Perhaps, it’s time to start having a real conversation about death so that we can deal with our fears and plan a death that will reflect who we are as a person. We plan the most important moments of our life like birth and our wedding, yet we avoid planning our death, which, I learned, is a great mistake.
In Western countries, technology has allowed us to help people live with chronic illnesses longer than ever, which was certainly the case of my mom. We can postpone death but cannot avoid it.
‘We got caught up in our own success. We started using expressions like life-saving. I really apologize to everybody for saying that because obviously, we don’t. What we do is prolong people’s lives and delay death, and redirect death, but we can’t strictly speaking save lives on any permanent basis’, argues Dr. Peter Saul in his Ted Talk on Dying.
Dr. Saul, an intensive care specialist, introduced a few years ago, a program in care facilities where people and their families were asked how they would want to die. The program was called ‘Respecting Patient Choices’. People surprisingly loved this program. 98% of people thought it was a normal practice and that it should be how it works all the time.
In order to start talking about death, Dr. Peter suggests we ask the following questions to our loved ones when they are at the end of their life: ‘In the event that you would become too weak to speak for yourself, who would you like to speak for you?’ Have you spoken to that person about things that are important to you so that we have a better idea of what we can do?’
I am still processing the death of my mom and I can honestly say that I regret not having the conversation with her about what she wanted for her last days.
Dr. Saul argues — and I agree — that it’s time to reclaim the death process from the medicalized model. The nurses who took care of my mom were loving and dedicated. They showed compassion at all times, something we don’t see in hospitals anymore. Yet, 90% of their energy was dedicated to soothing the physical symptoms of the illness, rather than taking care of how she was going through the process and enjoying her last moments to the fullest.
If we want to disrupt the actual system and prepare ourselves for a silver wave, it’s important to understand first what is not working, and why it’s not working.
According to BJ Miller, a palliative care physician at the Zen Hospice Project in San Francisco, ‘healthcare was designed with diseases, and not people, at its center’. Nowhere are the effects of bad design more heartbreaking than at the end of life (…).’ I cannot agree more with BJ Miller.
In order to rethink dying with the patient at the center of the system, BJ Miller suggests inviting design thinking into the conversation, ‘to bring intention and creativity to the experience of dying’. Yes, I agree, we need to rethink and redesign how we die, as more and more people are aging and will be dying in the coming years. It’s an urgent matter to address now! Humans often need to be forced to change. Let us be wiser this time; let’s plan this tsunami that will hit us in a few years.
What most of us are more afraid of, argues BJ Miller, is the pain, ‘the thing that unites caregiver and care receiver. We heal in compassion when we suffer together’.
When working at the Zen Hospice Project, BJ Miller talks with his patients about each loss they go through at each step of the way, ‘so that the patient can grieve and be ready to take in the next moment’. This is something that was greatly missing from my mom’s death.
According to research, what people want at the end of their life is: ‘comfort, feeling unburdened and unburdening to those they love; existential peace and a sense of wonderment and spirituality’, adds BJ Miller.
In her last days, before she became unconscious, my mom asked me if we could go in the car to drive around; she could barely think straight yet she was still unconsciously looking for some moments of pleasure. Because of the COVID 19 restrictions, she wasn’t allowed to go out. I didn't care; I would have brought her out has she agreed, even in hiding. Sadly, my mom didn’t get to enjoy her last moments at the fullest, something that BJ Miller encourages with his patients, even if it is not rationally safe for them. Why? Because the last moments will be remembered by their loved ones all their lives. And maybe perhaps, this would have soothed my mom enough to help her leave this world more peacefully.
‘Now is the time to create something new. I know we can because we have to’, argues BJ Miller in his Ted Talk about dying.
At the Zen Hospice Project, where BJ Miller works, one of the most useful and efficient interventions is to bake cookies. ‘As long as we have our senses, even just one, we have at least the possibility of accessing what makes us feel human, connected. Primal sensorial delights say the things we don’t have words for, the impulses that make us stay present — no need for a past or a future’, explains BJ Miller.
Had the palliative care home allowed my mom to go out with me in her car, she would have enjoyed every single moment of it; I would have too. It would have kept us grounded in the present, enjoying small beautiful moments together until the end. Instead of remembering pain, anger, and despair, I would have remembered joy, peacefulness, and delight, I would have remembered my mom the way she always was, anchored in the present, gifted with a child-like sense of wonderment for the small and beautiful things of life.
‘We need to set our sights on well-being so that healthcare can become about making life more wonderful, rather than just less horrible. This gets right at the distinction between a disease-centered and a patient or human-centered model of care. This is where caring becomes a creative, generative, even playful act. Rather than getting out of the way, aging and dying can become a process of crescendo through to the end. If we love small beautiful moments ferociously, then maybe we can learn to live well, not in spite of death, but because of it. We can’t solve death but we can design towards it’ — BJ Miller.
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