So, what’s behind writing this book, for you?
Well, I’ve had a long-term passion about how we do death and dying.
How did you get that passion?
I think lots of strands – for a start, by nature I’ve never been afraid of my own death. Then when my parents died (my Dad was actually a hospital chaplain – he was at Waikato; he and Mum died in a motor accident) I think that led me somewhere about funerals. Many years later I worked as a funeral celebrant when I was living in the UK, and in the process of that I also explored death and dying area more broadly and found myself just wanting to be with people when they were dying. That led me to some soul midwifery training…
What is it, specifically, that you wanted to connect with me about?
I’ve read some of your articles and blog posts and think you have interesting things to say. Can we begin with your thoughts about ageing, because how we think about ageing must inform how we think about dying, and vise-versa.
The most interesting thing about ageing for me at the moment (as a 62-year-old) is how liberating it is. It’s as though I’ve (at last) outgrown some of the limits, or the messages that so bound me as a younger person. I have more questions about the role of authority in my life, more queries about whether the professionals really do know what is best, and I have developed a far greater reliance on my own good sense and wisdom.
The second interesting thing is how our whole society is having to change attitudes towards ageing. Instead of sticking with the idea that once you reached 65 your life was essentially over, a huge group of ageing people who are reasonably fit and still interested in life are forcing us to reinvent this new age of being. I’ve just watched a Nigel Latta documentary called ‘Getting Old: The Retirement Bomb’ and I found it stimulating mostly because there is a recognition that this period of my life might go on for 20 or 30 years and people are doing much, much more than sitting around knitting. I love that Bunnings (a large hardware chain of stores) likes to employ older people because they know so much. I love that people are retraining and looking towards new or redeveloped careers. That’s exactly what I’m in the process of doing, thinking about what alternative training I can do now to set me up for the next 20 years because I have no intention of retiring from work. In part that’s because I just don’t have the money to live easily without more income than national superannuation, but the most important thing is that I love going to work and being involved in contributing to the common good. Even if I could afford to sit around and go boating and travel all the time, I just wouldn’t. I would be SO bored and think that would be a waste of my life.
Also, I’d like you to speak about your experiences as a chaplain, and what are the oft-repeated responses you see to death and dying. And how might it be different?
On the whole the people that I come into contact with are reasonably pragmatic about dying, particularly when it seems that people have had a ‘good innings’. There is a sense of a life lived in all its variety and, if they have time to reflect on it, the process of working out meaning and joining the dots of their life enables them to come to terms with it. People are more anxious, and understandably so, when they or their children are younger and that sense of not having lived enough rises to meet them. I can understand that.
Sometimes it’s not the person dying but the friends and family around them who find it more difficult to cope with, especially if they are called from far away at a crucial moment. The stress of the moment can put pressure on family members who might want to persist with treatments that are ultimately unhelpful and may prolong a person’s life but not add to their quality. In those situations, people can experience a sense of unfairness and also begin their process of bereavement and loss without even realising it.
In those situations, too, I often think about the omnipotent God mythology, the idea that there is an all-powerful being that can do miraculous things at will or on demand. It’s an interesting mythology but one that has been literalised and quite rightly rejected. However, it seems to me that there is a tendency to reinvent that mythology around the medical profession – assuming, hoping and sometimes expecting them to perform the miracles that God used to be petitioned about. Putting any group of people into that position is ultimately unhelpful because none of us can deliver on mortality.
This is what Steven Cave pointed out in his very helpful book Immortality: The Quest to Live Forever and How it Drives Civilization. He reckons there are four main stories humans have told themselves about death, from religion to science, and all of them are designed to have us avoid death. In the end he rightly concludes that none of these can deliver and that the only way we can come to grips with life is by developing the wisdom traditions. We have to face up to immortality from the beginning. The advance care planning processes that are becoming more and more popular are a contribution to this, but I think more open and honest conversations are needed in our communities so that we stop mythologising the medical profession and the health system into the God that cannot deliver. There has to be a partnership approach to living and dying. We all have responsibilities in that process.
In terms of being a chaplain, I always ask what matters most to a person, and try to connect with them on that level. If it’s Smoky the Cat, Fred the Dog, family members, a career, or a religious tradition, then that is what matters. Often people want to talk about their story, in their way – to be heard just as they are with no improvement required. Sometimes they are walking towards forgiveness or reconciliation; sometimes a sense of peace is needed and gained through the sharing of story. At times people want particular rituals; other times it’s the sense of presence that matters more.
I’m hearing you say that we need to take more responsibility for our ageing and death, to face up to them. What do you think about the idea that we are capable as human beings of having an inner sense that our time has come? In traditional societies it may involve going off alone. In our society it may involve a choice to cease eating and drinking.
I think that’s really important, that we are capable of knowing that our time has come, but in order to do that you have to live within your embodiment, not outside of it. Sometimes our society encourages us to live outside of ourselves – to be pulled out of ourselves to another entertainment, or another activity. I can see this with the heavy emphasis on sport in our culture. Sport and physical activity are wonderful but sometimes they become a diversion from what is within. Going alongside the need to be physically active is the need to develop a soulful approach in the face of the vulnerability of mortality. It’s an important challenge in our century.
Huge, I agree. And going by the ads I see for aged care and retirement villages there doesn’t seem a lot of emphasis on soulful living.
Well you’ve got to ask who’s making money, don’t you? Where is the money going, and what is their purpose? So the advertisements are around all the exciting things and not much about how people are going to die in the same kind of way that most of us do. Interestingly I was called to a large retirement complex the other day to be with a daughter and her dying mum. It seems that this national retirement business employs activity people and nurses and all manner of care people but no-one to attend to spiritual and soulful needs. That seems somewhat unbalanced.
Yes, because when we front up to our death, we’re free to live; it’s not kind of hanging around somewhere. We’ve met it face-to-face; now we can get on with living – and living in that embodied way that keeps us connected to the deepest part of ourselves, and the deepest part of each other, and to our physical world.
Yes, I think so. For me a lot of it’s around that kind of approach. How do you as a society assist the process of aging? I suppose governments will be relieved that big players have come into the market, and kind of dollied it up, but the reality is, most of the people that I come across in my day-to-day work aren’t going to live in these places. We can’t afford to. So I think there’s an illusion going on here about it, which as a society we are somewhat complicit in.
I guess as a hospital chaplain you encounter people at a point where their lives have been irrevocably changed. What are some of the shocks people face, and how might we prepare ourselves better to face what might (or will) come?
My experience is that often thoughts about the end of life don’t get entertained until people have an event that immobilises them, or means they can’t drive any more. Losing your license is a huge event, and it really throws up in stark relief that you are not as independent as you once were. That initial achievement of getting your license is such an independence-giver, an indication that you are entering the adult world. And so losing your license is at the other end of that. It’s really upsetting for many people, and I know I would find it really difficult. So some people don’t think about it, and their families don’t think about it, and they just hope that it will be alright, but these losses are often hard to take and set up the grief and loss process. And once you don’t have your driving license, where you live may become another issue so that losses start to cascade.
It’s interesting, because again, in traditional societies something like no longer being so independent wouldn’t matter two hoots, because your function is slowly changing to one of quiet support, and mentoring, and your own inwardness.
Even a few months ago I would have said that we don’t live in societies like that but I’m noticing the changes that are occurring. Partly this is because I’m reading a lot of academic literature around spirituality and health and it’s wonderful to see that there are professional standards around spirituality being developed in the elder health area. This means that the focus is on exactly what you’re talking about. In addition, the work of the Commission for Financial Capability is creating energy and resource. Although it all began around the reality of financial pressures that New Zealand faces with us baby boomers changing to ageing stars, the byline, Building Wealthy Lives is so hopeful, full of multiple meanings. By putting focus and energy into this area we start to see things differently, do research that has meaning and can alter our perceptions and actions.
What else can I tell you?
Do you encounter people, I guess elderly people in particular, who are ready to die, but who are essentially being kept alive, and feel alone in this, in relation to their families or the medical profession?
I do listen to people talk about how they are ready to die. Sometimes this is because they need some help with medications or support. Getting those in place actually changes the focus for a person and they can then see that there is still a richness to be had in their life. Other times, yes, they are ready and our job then is to listen properly and not intervene in a heroic way. This ought to be part of ongoing conversations between everyone involved. Deep listening to a person’s wants and needs is the key.
Does advance care planning help in situations like this?
Yes. The more families can talk about what matters to them towards the end of their life, the better off we all are. There are no surprises or overly emotional reactions to bad news. Instead there can be a sense of understanding and an ability to make decisions in the knowledge you are doing what mum or dad wants.
Would you to talk some about euthanasia? I found your article thoughtful and a very necessary part of the whole discussion, because mostly the debate is from one side or the other, whereas I felt you were just encouraging thoughtfulness.
From my perspective as a person in spiritual care, what’s important is working with people so that they can work out their own meaning. So for me, trying to walk a path in the middle of all of this is really important. It seems that the debate is in danger of polarising around pain and palliative care. But in my view euthanasia is not about being ill; it’s about whether or not human beings have the right to die. When the conversation gets stuck in the palliative care area, then the focus is on pain and whether or not someone’s got the right pain relief on board. I absolutely support palliative care. It matters in any community and I work with such wonderful people in this area and if I need their services in the future I would be just thrilled to get care from them.
But I repeat, that is not the issue for me. The issue for me is whether I have the right to die, and clearly, in our society, I don’t.
I think we need to talk about that issue, and the reality that people are going to want to die at various times in their lives, and under varying circumstances. The questions for me revolve around how we as a society deal with that, and what values and meanings underpin that. For me, this is the most important conversation so that we could hopefully get to the point where as a society we could compassionately support people in their choice to die.
I can see that we could ritualise death in these circumstances, and put song and dance and art around it. We could choose the time of our death, bring the people that we care about together, say the words we need to say, and in my case drink gorgeous champagne, and go. It’s interesting that over the last few months these kinds of rituals have grown up around people in some countries who do have the right to end their lives. I know it seems strange in our culture but I think we need to let go of some of the strongly held ideas and sit a while with some new ones.
I’m interested, Sande, in what might have led you to respond to life in the way that you do.
As I reflect on my life, I reflect on how much of my life is controlled by other people, and other people in power. I was adopted into a fundamentalist Baptist home, and that has impacted my whole life. If I look now at my reflections about the Father God being transferred onto the medical profession, I think no, I don’t want that kind of mythology at this end of my life, and I resist that in our society – our society kind of adopting the Father God in another way. When I was twenty-five I had my daughter, and the experience for me was pretty distressing because that whole adoption thing was about searching for the source of being. So I had my daughter and had a very difficult time. This resulted in my first mental health diagnosis of post-natal depression. It wasn’t entirely helpful. I used to feel that instead of people actually hearing my story, what they heard was something that fitted a screening tool, which put me on a pathway. So I went on that pathway dutifully and obediently, and lived into that and many other diagnoses that came along.
“Living into diagnoses” – that’s a powerful expression.
I think it’s what happens, because, you know, it’s not easy to be a human being, is it? All of us struggle in some way, and I struggled, all the time thinking there must be something wrong with me. In a way it was a chronic pain issue; existential pain, an all-encompassing suffering. Now I’m not alone in that feeling, but if so many of us think like that, you’ve got to wonder what’s happening here. But, as a society we don’t sit and talk about it. We think, there must be something wrong with me; who will I go to? So I go to a doctor, and what does the poor doctor do? The poor doctor’s got fifteen minutes, if you’re lucky, to try and think this out, or help. So what happens? An industry comes along that says, I can help you with that, and creates all of these wonderful drugs to theoretically help you feel better. And so the poor doctor prescribes them because at least it gets the person out of their surgery in fifteen minutes and they can feel as though they are helping.
I’ve almost never been to a doctor, so it’s really helpful for me to talk with somebody who is with it all the time – living with medical care, not only from your own background, but also in your work.
Fixing the fixable is very important. We must do everything we can to alleviate suffering in a compassionate way. But I think we have forgotten that there is no life without suffering and learning to live with suffering is an important life skill. Learning to manage pain of many kinds without instantly resorting to a quick fix is one of the things that helps us develop resilience and courage and wisdom and a kind of soulfulness. It’s part of the spiritual journey of waking up to reality. Part of the problem of having a group in society that has been set up as the replacement to the God mythology is that it puts enormous pressures on that group to fix.
What’s your sense of why, Sande?
One of the hardest things for health professionals, who have been trained to diagnose and treat, is to sit beside someone who is suffering and be able to do nothing. My mum gave me my first practical adult lessons in this when she was dying of cancer. I was 21 and one of a team of three who nursed her in the last month of her life. It was one of the most powerful experiences of my life and I am forever grateful for that privilege. But there was nothing to be done, other than compassionate care and listening. It was very hard to just sit and listen. I like to think she would be pleased I’ve ended up with a few more skills in this area now!
I think she’d be delighted and intrigued!
‘Death is failure’ comes up for me as I hear you speak.
To me death is not failure, but I think there’s more conversation needed so that as a community we don’t have unrealistic expectations about staying alive, and then push those expectations on the medical system, who are forced to respond. I think our lives would become different under those circumstances. Better!
If we looked at illness from a place of curiosity… This is interesting. What might it be about? Why might this have come along into my life?
Yeah, exactly. It might just be about, ‘What shall I do with this? Hello, come into my life; may I get to know you?’ This is something that Eve Ensler and Martin Crowe did very well as they both walked along with cancer. Martin started to see lymphoma as his teacher. Brilliant.
Yes. I notice that in our society there’s a sort of commitment to live as long as possible, and that not living as long as possible lets other people down; lets us down.
I remember when my children were young, living in Porirua, hearing about numerous children with glue ear in the Far North. They couldn’t hear properly and so were failing at school, and all for the want of a $45 grommet operation. And at the same time, we had somebody living in Porirua who had one of the very first heart transplants in New Zealand. And I’m thinking, ‘What’s going on here?’ And I said to my kids, young as they were, that if I get to the stage where I need some hugely expensive medical treatment, just leave me be; leave me be and let me just live out the rest of my life in the best way possible. I’d rather the money went where it’s really needed.
So that’s a very big re-balancing of values, isn’t it? It’s not sexy to do research in public health, or in poverty. It’s sexy to do it in the big conditions like cancer. I think this is unbalanced and tends to reflect the energies of a few people who have been impacted by a particular condition and then raised funds around it. And ‘fighting cancer’ is a slogan that drives me insane. Why would you fight off your own body?
I agree, Sande! There’s a wonderful magazine in Britain – The Big Issue. It’s produced for homeless people to sell on the streets. I recall reading in one of them a little snippet about some very well-conducted research about wearing of bras, and how it was exactly related to breast cancer [deaths/diagnoses] and the longer people wore bras, the higher the chance of developing breast cancer, and especially bras with underwires which press on the lymph glands. I mean it was really, really clear, and yet at much the same time there was a huge walk for breast cancer research. You paid to go in it, and you got sponsors and so on, and everybody was given a bra to wear over the top of their tee-shirt. They got this huge sponsorship from a bra company. So they’re not going to advertise this piece of information that says be careful what you wear; especially avoid underwires. You can barely buy a bra without underwires, anyway!
Is there anything that you could say in general about what you come up against in our society around death?
I think there’s less anxiety now about where you might be going when you die. I think largely we’ve got over worrying about if there’s a three-tier universe with a literal heaven and hell… only just, mind you. My experience is that people are more anxious about how they will die, rather than the reality that they will die.
When people are aware that death has come to visit and sit on the bed for a time, mostly people gather, and hang out with people that they care about. That’s really good. The biggest thing that concerns me is that we don’t talk about it soon enough. I think death should be part of what we do every day. Like I don’t think that we should have burial grounds away out of town. We’d be better off with a little burial ground in each area.
Little ones in the suburbs, as it were.
Absolutely, and that we should celebrate death, I think, and learn to understand its value in life. We still pretend, and so that would be my biggest thing – let’s talk about it earlier on – have it as part of our everyday life.
There’s a wonderful book called Cry Heart and Never Break about death coming to have a cup of tea with some children. It’s just awesome. I’ve used the concept in talking to some people struggling with the idea. They just love the idea that death could come and sit on the bed and have a bit of a natter. https://www.brainpickings.org/2016/03/08/cry-heart-but-never-break/
In a blog post, you write about living with your desk skull. Can you tell us something about this and why it’s important to you?
It’s just a small skull, large enough to remind me to focus on what really matters; to keep me aware that I’m mortal; and to remind me to be soulful in my mortality.
Thank you, Sande.
Is that alright? Useful?