Stephen Jenkinson reimagines dying

PIERZ NEWTON-JOHN: I think I’d describe you as a bit of an iconoclast as far as the palliative care world goes. Would that be fair to say?

STEPHEN JENKINSON: Doesn’t seem to be limited to the palliative care world from what I hear. But it’s a good start. Yeah, they wouldn’t hire me. For sure.

I’ve heard you saying at one stage that they thought you were a good idea!

It’s a good characterisation of any relationship with an ex. Isn’t it? “Yeah, once she thought I was a good idea. And I did too.”

Yeah.

“And the greater wisdom has parted us.”

So can you tell me about that journey? First of all, how did you start working in that field? What drew you to it? And then what caused you to diverge?

These are very prosaic propositions to be honest. It’s kind of that brute biography thing, you know. I don’t think it’s really a description. It’s certainly not fate or destiny that shows up there. It’s better said, frankly, in the back of Die Wise. They made me write what they call an “author profile” or something. I hated the outline they gave me. So I blew it up and made it something that looked more like what actually happened. Not something that is understood with the benefit of hindsight, like, writing the life of Jesus, all of a sudden everything looked like it was leading up to that great meeting on the hill. It looks a bit fateful in hindsight. Of course at the time you’re treading water, right? You’re sinking, you’re washed up on shore. All in a day, frankly. But not to totally frustrate you, the simple story is, I knew a woman who was pushing me to be working in this field. I shouldn’t be working in an organisation; I’m not a team guy. I already knew I wasn’t built for that. So that’s just that. There’s no sense going to a hardware store for bread. And I’m either the hardware store or the bakery, but I’m not both.

But you led a team didn’t you? You led the palliative care team.

Yeah, well that’s one of the ways you find out what isn’t right for you. But let me keep at the biography just for a second and then I’ll come to that. So this woman said, “This is what you should be doing.” I had regard for her opinions. Not necessarily for me but I tried it on. And the heads of the palliative care team said, “Take these guys, the dying guys, ’cause they’re terrifying us. They’re really tormenting the hospital staff.” And I said, “What’s going on? This is pretty active language you’re using to describe your reaction to these guys.” “Well, they seem to divide up into two categories: one group is hostile, belligerent, grievous, aggressive, et cetera.” I can understand how that’s intimidating of course. I said, “What about the other guys?” They said, “Oh they’re much worse.” “How so?” “They don’t say anything at all. They’re the real unnerving ones.”

So I started with a list of guys’ names and phone numbers—that was it. And I just said, “I’ll do some kind of group, I don’t even know what. And I’ll see if I can get them to come. To what, I know not.” That’s the promise you begin with. And that’s literally what happened. And by the third phone call I was getting the same reaction each time—complete surprise. So this was a group for men who are in this exhaust pipe of life you could say. And the reaction was always, “But there’s no women involved?” “No.” That’s when they backed out. Each and every time they backed out. I recognise a theme when I see it. So by the fourth guy I said, “No, no, this is a group for you!” He said, “I just told you I don’t want to be in a group that’s just got men in it.” And I said,

[Laughs].

And, you know, the guy on the other end of the phone was so confounded that he said, “Okay!” And that was my first guy! I think I probably started with seven or nine, no more than that. And, you know, we sat in a room. I got up there slightly late and they’re all sitting in a circle. And I sat and I just took my place. But nobody knew what I looked like. So everybody’s waiting for the guy who phoned them. But I waited as they waited. And at some point you could feel the consternation start to rise. And as men can do, nobody’s really looking at each other. Everybody’s burning a hole in the middle of the floor.

Yeah.

And finally I spoke up, and they looked at me like, “What a fucking idiot!”

[Laughs].

“This guy’s sitting there all of this time? He’s the guy!” You know. “We thought you were another wounded fuck-up like the rest of us!” kind of thing. Well, yeah. And that was the very unpromising beginning.

Can I ask about that though? Like, what made you decide to do that? Because you also tell a story in the book about waiting outside with a counselling trainee before you go into a house to visit a dying person. Just standing there in silence. A similar kind of bamboozling trick in a way. What was that about for you? Why did you sit there like that?

Well, because learning is a ramshackling affair, that’s why. And the culture that I know well doesn’t believe in learning. It believes in knowing. It rewards knowing. Right? It rewards certainty, it rewards competence and so on. So how do you subvert knowledge and certainty when people have it? So that learning gets a chance to appear? How do you do it? And the answer is, sometimes you have to craft a circumstance in which certainty is shown to have the kind of limited broadcast bandwidth that it has. It’s just not that big an achievement to be sure of yourself. I have a school as you probably know. And I’ve elevated ambivalence to be an art form, or artfulness, that human beings must deeply cultivate. That’s one. The capacity for ambivalence. And when you study the etymology of the word “ambivalence” it has nothing to do with confusion. Nothing to do with confusion. It means the capacity to nurse several often contending takes on things at the same time without collapsing into a decision in favour of one and banishing the others. That sounds like a skill to me, particularly in an ambivalent time where all manner of ambivalence is coming at you. And so many things are asked of you, right? So the opposite of ambivalence is confusion. “Con-fusion.” To be fused with no flex, no bend. Rigid as all get out, you see. That’s what certainty looks like. So how do you subvert that? How do you ask people not to be so sure of themselves when the reward system all around them is exactly for that? And the answer is you have to craft a kind of creativity for the sake of the person, though they would never recognise it as for their own sake. ’Cause nobody trades certainty for ambivalence. Not where I live at least. And the other thing is

So there is an eloquence that many people are capable of, but they reserve it for the things that they’re sure of or they feel comfortable about, or they approve of. And then the bombast or the lamentable Trump-like abuse of the language: that’s reserved for the shit that you deeply disregard. That’s generally how it goes. So in the school here’s the greater obligation—that your eloquence must serve your consternation. That’s one of the, you know, 1406 commandments of the Orphan Wisdom. That your consternation is the place where your eloquence is most relied upon and traded upon and practiced. So that’s what you read in that story of standing on the front porch. It’s not bamboozling people for its own sake. It’s to unready them to make them remember the last line of that story, “You are the one who’s subject to change without notice.”

Yeah.

That’s how that story ends. And if you’re there to serve—and what else is there?—then your service can’t be predicated on you being sure of yourself before you even go in. ’Cause your certainty is actually an insurance policy against what you’re going to find in there. So what use are you when you’re so well defended? So that’s the thrust of it all. And I don’t think I was doing that to those guys in the group. I mean I was as uncertain about how to start as anybody else was. But silence is not an enemy of…

It’s certainly a lesson in tolerating silence and uncertainty.

Well practicing it, not tolerating it, practicing it. You know. Not enduring.

Yeah. Nice distinction. So one of the holy cows that you’ve jousted at in the book is the notion of hope. Can you talk about that? Because people assume that hope is a good thing.

I don’t think even assume. That’s too active for what happens. They hope that hope is a good thing. What I’ve seen over and over again is what hope does to people. That’s what got me on this thing. I didn’t say, “Now what holy grail can I melt down for gold fillings for my teeth? Oh hope will do!” No, I’m not reckless. I’m pretty discerning. And I don’t take on the easy stuff. And I don’t take on stuff just for exercise. I take on the dementing things mostly. So hope. It’s not the content; this is the great shell game of hope.

And you’re supposed to live that tightrope or that no man’s land between those two things. Driven by dread towards hope. Not my idea of a good time, but man, you may know a few people who proceed accordingly. I saw them by the legions in the death trade. And of course, the fact that they were all dying upped the ante on those two things—dread and hope—enormously, as you’d expect. So at this point my tendency was to look at these things that were so heavily traded upon and simply wonder if they could pay the rent that they seemed to owe for the enormous real estate they took up in the enterprise. That’s all. It was an exercise in discerning, not in judging.

So I looked at hopefulness, not the hoped-for thing. Because they did get cagey after a while in the palliative care business. They realised that dying people hoping for a cure was probably not the best deal, right? So what they just did is gently nudged them towards, quote, “More realistic hope,” that’s their phrase. Friends, there’s nothing realistic about hope. Period. Okay? That’s the shell game. You use that kind of language, you misrepresent what the consequence of being hopeful is. Because you’re selling it. Like any salesman, you overlook the shortcomings of your product. Otherwise you get no sales. And people are pitching hope all the time. So all I did was ask myself one simple question: what does being hopeful do to dying people? What does it ask them to steer clear of? And this is what hit me: that hopeful people by definition are people essentially addicted to potential, not actual. Not manifest. Potential. Where does this potential live temporally speaking? By definition it’s in the future. If it appears, it’s not potential anymore. There’s another word for it, right? “Future orientation” is the one. The parallel I always used was the experience of taking on a mortgage. ’Cause it articulates it so beautifully, you know. First of all, the word “mortgage.” The first four letters mean…

Death.

…Death. And the second part of the word means to calibrate. It’s a calibrated death, a mortgage. And if you ever had one…

[Laughs].

…You recognise that very well. Apparently in Melbourne you certainly know what that means! Jesus. So what does a mortgage do to you? If you take the bit in your mouth, “That’s true, I’m doing without right now so I can make my payments so that eventually I can live like this! And the sun can dapple me in the morning.” You know. “And I’ll own it outright. And then my sense of wellbeing will finally be enhanced, and I’ll sit at the right hand of the Father or something or other.” But what does my daily life look like as I do without? This is the function of hope. That it guts your daily life, leaves it in tatters on the beach if you will, desiccated by the sun, while the hoped-for thing continues to be dangled just in front of you, never to be realised. And the idea apparently is the athletics of pursuing the unpursuable inherently improves you. Sounds very Victorian, doesn’t it? Like it’s just for improvement’s sake. As you die! So what I saw is it turned dying people away from their dying in the name of providing a better dying.

Yep.

You see. That’s the shell game. And it amounts to a kind of grotesque malpractice. But if the people collude with you, if the dying people collude with the practitioners, what do you call that? I call it the death trade. Nobody says, “Wait a second! The Emperor’s genitals are hanging out here. And you call that a new suit?” That’s what it was. And I called it out. And so now I’m on the other side of the world making a living, banished from the citadel.

[Laughs].

The hope withers your understanding. It doesn’t enhance it. It’s not life affirming. All that hope, all the aspects of life that are affirmed by hope are the ones addicted to hope. And any hope-free scenario. Because hopeful, hopeless, that’s the same—you’re singing the same song backwards, forwards.

That’s where the dread is pulling you towards: hopelessness.

Exactly. “Well if you’re not hopeful then…” And people will say that and they’ll hold their hands out like this, as if there’s only two. And I’m opting for the positive, and you’re a negative bastard. Well, being hope-free doesn’t make me negative. I’m not even negative about hope. But I’m not hopeful about hope. See? And there’s a freedom in that. You know? It’s not clever. I mean if you slowed down the articulation you realise this is not wordplay. I’m not playing badminton here. I know how pernicious hope is because it makes dying people incapable of dying.

The other thing that I think it relates to is the “more time” that you talk a lot about in the book. Because again it’s about the future. It’s always deferring into a future where you have more time, but “time for what?” is the question that you pose.

Partly “for what.” Partly “for what.” Everyone I worked with in the death trade as a patient, by the time they got to me, had already been through a treatment phase for the disease. Which is to say had they not been treated they would be dead by the time I met them. So spoken differently, what can we say about every one of them? They were in the “more time” they were still trying to engineer. You see? They were still wondering if they were going to be granted it. And their wonderment about this was taking place in the more time they were still waiting for.

So there’s a story in the book about the Filipino woman who was a praying person. I wasn’t taking on prayer and making a joke of it. But that was the story I employed to try to make the case that

More time to have more time so that in the more time you will have more time, and then more time to try to get more and what does that sound like? That’s the program of the modern era. It’s simply growth or expansiveness for its own sake. When does this go into abeyance? Your life’s limit has come to call, walking through the door, not taking over, just sitting quietly in a chair in the kitchen wondering if you’d join it for tea. That’s what the end of your life does. I know it’s a little hard on the furniture, the symptoms are a drag, it’s all true. But for all of that, if you don’t grant it a seat at the table, it tends to take all the seats. That’s the basic thing. So if you have people who believe that they’re being positive and their families are pleading with them not to give up, etcetera, etcetera, the “more time” is the religion that they can invoke to assure everyone around them that they haven’t given up. And then you see what an enemy it is to anyone who is trying to court or be courted by any kind of ending. And the more time never happens. And it increases the depth of the despair. And they die gasping from the sheer indignity and injustice of never having been granted that one simple wish to have a little more time with their grandchildren—that they had squandered in looking for it. That sounds like a nightmare to me. That people can be awoken from. But the sound of awakening from a nightmare like that is a sob. It’s not hallelujah. See? That’s why it’s a tough sell. ’Cause to awaken from that nightmare is to awaken to your ending. Does that sound like awakening to most people you know? Probably not. And that’s what I have to sell. And I’m still selling that I suppose. That vision that the sound of awakening in a time like ours is a sob.

But I mean in this culture where everything gets started with a little “i” or something. The iPhone, whatever. It’s like it’s all about “I,” it’s all about “me.” And so it’s very hard, right at the end of your life, to go from, “it’s all about I” to “it’s something bigger than I.”

Sure.

That’s a hell of a challenge you took on for yourself trying to change that paradigm.

I guess so. But what else am I going to do with my little life? But chew on the heels of the Empire. That’s all it is. It’s not like I’ve taken dead aim at its cyclops’ eye. Between you and me, I kind of am. But I just think all I’m doing is tying its shoelaces together and hoping it will trip.

But your antidote is broken heartedness. And as far as sells go, that’s a hard one isn’t it?

Yep. Yeah that’s true. Well I’m much more a practitioner of broken heartedness than I am a salesman. I think that’s my obligation, frankly. If I’m advocating more heart, more brokenness, then they better not have to look past me to see it. Right? I tell a story that’s kind of a joke. I’ve never seen it happen. But I keep pleading for the day that somebody writes me and says, “Remember that story? I did it!” Nobody’s done it yet. And it comes to this: so you’re the patient, I’m the oncologist. My job at a certain point in proceedings is to tell you, “I’m sorry, there’s nothing more we can do.” There’s always a lie in palliative care ‘cause there’s always shit to do. But it won’t cure you. And then eventually won’t even slow it down. But it will make you numb to its progress. So it goes. Now somewhere in that pitch I’m trafficking in something. I may use the word, but just as likely I may not. And it goes like this: “At this point you would be best served by going through the stages as quickly as possible and getting to the last stage, the famous acceptance. That’s why I’m telling you there’s nothing more we can do. Read my lips. Get to acceptance as soon as possible.” You might do the following: you nod at everything I say and then you’d say, to me, “I hear you and I can see you’re working very hard to get me to that acceptance thing. Now between the two of us, to be frank, I’ve never really known what that is. You on the other hand are selling it, and it looks like you’re very convinced about it, and man, you’re the pro. God knows that I’m not. So could we do this? Like right now, I think we’ve got seven minutes left in the interview? So let’s do this. I’ll sit here quietly. You as the purveyor of acceptance, and surely this comes easily to you because you’ve got a lot of practice at it. I’ll sit here and watch you. I’m asking you to accept your death right in front of me so I can see the obvious merits descend like a dove from the heavens. Okay? Now here’s the thing. Probably because I’m slow, as you accept your death one more time right in front of me, I could miss it. So you might have to signal me that the acceptance is complete. Away you go. I’ll be over here.”

[Laughs].

See? It’s a good story. Right? It’s not just to make fun of anyone. What I’m saying is the people who are practicing the acceptance mantra have done what regarding their own death? Played badminton with it, that’s what. That’s what I saw in the death trade. People are convinced about this religion. But not practitioners of it. Among other things it’s disingenuous, isn’t it? Or worse. It’s rampantly dishonest. You want somebody to do something for their own sake that you know in your heart of hearts not only have you not done, but you think this is a condition of brinksmanship, to accept your death. That it’s only with proximity to your dying, to symptoms and all the rest, that the possibility even arises.

Who says that? Well I say it and I’ve never heard anyone else say it. To this day I’ve never heard anyone else invoke the concept “too late” because that’s a grownup understanding. And when you’re a patient you have no obligation to be a grownup, apparently. You see this understanding of mine comes from the view that your death is not your death to do with as you see fit according to your own personal stylings and all the rest. You see, the consequences of a bad death do not end when someone dies. The consequences of a bad death are exponential, and they actually accelerate after the death of the person in question. And they’re viral, frankly.

I was thinking “cancerous” but yeah.

And this is hard to even call sorrow because it’s so maniacal. It looks more demonic than sorrowful. But that’s what I saw over and over again. And that’s what animates me. You’re supposed to cool out apparently as you get older. It’s not working out in my case.

[Laughs].

And people mistake me for being “angry all the time.” I’m not angry all the time. But you’re not used to someone engaged with a sense of urgency maybe. So you mistake it for aggression. That’s not what it is. But I do know what I’m talking about. All you’re hearing from me today, all you’ve read in the book is what I saw.

You talked a lot about that undertow of dread and you paint a very vivid picture of how miserable many people’s deaths are in this culture. You must have seen the other side as well with some people to know that it can be different.

No. Not very much. Not very much. I would tell you easily 95 percent of the people I worked with died badly. By any sane measure of what dying well is, they died badly. Now 95 percent is not a trend. It’s not a demographic blip. What would you call that? Ninety-five percent of anything. What is it? It’s the way it is. Isn’t it?

Yeah.

That’s the way it is.

Yep.

Okay. And if it’s a calamity of catastrophic proportion, what do you call it? A plague. And it’s that proportion. And it’s endemic now. You can barely talk about it and yet it’s seen because it’s so pervasive. It’s in the eye. To die badly is in the repertoire of dying people. And it’s the default choice that’s made. Now I know, as you do, nobody chooses to die badly. Those 95 percent, they didn’t even think they were dying badly for the longest time. Because when does your dying badly begin? Does it begin in the last toilet bowl twist of anguish and agony and sedation? Is that when it kicks in? That’s not when it kicks in. Where does the sedation come from? I mean the invocation of sedation. Where does it come from? Is it a pain management strategy? I’m telling you it isn’t. Pain management and sedation are different strategies responding to different things. The dying people on my watch—this is what they all had in common. Their bad deaths were characterised by the fact that they had become small, unique, particular to them. A personal possession which they owned and they dispensed it according to their own norms and understandings and misunderstandings. And those misunderstandings were served and protected by the families around them and by paid professionals who were paid to do otherwise. Full co-conspirators. And the smaller it got, the more personal it became, the worse it was. That’s what they all had in common. So who chose that? Nobody chose that. Then you realise the dying is an iteration of the cultural norms. It was the fullest articulation of the way people had lived as subatomic particles. As what I call the snowflake theory of humanity. “Everybody’s unique! The world has never seen the likes of you!”

[Laughs].

“And your dying will have the same gorgeous particulars attending to it!” What was the first line in Anna Karenina? Do you know it?

Yeah, “All happy families look alike, all unhappy families are unhappy in their own way.”

Okay. All of the managed deaths look alike, and I just described them to you. And all the unmanaged deaths were remarkably non-compliant with this norm I’ve just articulated. Not intentionally non-compliant. Some minority of people simply had found, or stumbled across, or backed into, a willingness to engage their death as a god. Not that anybody ever said it that way. And the god of death is a god, as is the god of grain, and the god of the ocean, and so on. And all it means is for you to craft some understanding of and become a bit of a practitioner of the etiquette that approaching a god asks of us. That’s what it is. It’s not subservience. It’s etiquette, but of a deep and radical kind. And if you understand your death to be a deity, not an executioner, then what repertoire do you draw upon? Not endurance, not coping, not acceptance. What? Something closer to devotion. Something closer to learning. The very undoing of trauma. Why didn’t I see legions of this other kind? You can bust me on what I’m about to say. But they didn’t need me, you see? There was no reason for me to be at the good ones. By definition, what’s my job? To become obsolete in people’s lives. I know people in this business who think it’s their responsibility to be at people’s doorstep every other day when the dying becomes active. To become part of the family? My take on it is if I’m worth anything to these people at all, I’m gone by dying time. Right? Otherwise I’m a bit of a ghoul frankly. Where I’ve worked out an arrangement where they can have continued recourse to me: what does that sound like? Sounds like job security. Right? And a lot of people trafficked in job security. Pretending that the people needed them. But you crafted that neediness. So more malpractice, you see? Surely your responsibility is to work yourself out of a job.

So in coming in and attempting to help people see their death as an angel rather than an executioner, some of them might have taken that as you coming in to break all the furniture and trash the place?

Yeah. Well here’s the thing. Let us not trade inadvertently on the idea that people with a terminal diagnosis get it and people without a terminal diagnosis don’t. And that when you’re dying you become a spiritual genius mysteriously. Or when you’re not dying you’re a lunkhead like the rest of us.

Yeah!

There is nothing conferred upon you by way of understanding or intuition or anything that comes with a terminal diagnosis, frankly. It is a life-altering event within very specific limits. And this is the grotesquery of it all, that I didn’t see a terminal diagnosis change everything. Did a terminal diagnosis change a dying person’s understanding of what it means to love and be loved? I almost never saw that. What they did instead was they re-entrenched their pre-morbid understanding of love. They built it higher and stronger. Love is not giving up. And love is staying with it, trying another round of chemo. Honest to Christ I’m telling you this is what I saw. How has their understanding of what it means to love somebody been changed by the fact that they’re dying? In other words, who’s the god here?

See? That’s what I was contending with. Does anybody articulate it this way? Of course not. They just lived it. The white light of death phobia is invisible. Okay? So I had to find a prism to refract it so I could begin to see its constituents. And that’s what I was able to do. And if I have any nominal use to anybody else, I think that’s probably what my usefulness might be. It’s to have found a language that articulates the constituent parts of this death phobia so that it becomes legible and we become in some fashion lucid in this regard.