April 8, 2025 • 58 mins
And not just your heart. Organ donation is a gift that can change, improve and enrich the lives of many others, after your death.
But very few people donate their organs. In NZ less than 70 people a year donate their organs after death. Since 2020 the peak was 66 people donating in any one year.*
Host Timothy Giles talks with a pioneer of organ donation in NZ, Dr. Stephen Streat to demystify the process and hear some moving stories as we learn more about this too rare gift we can offer after death.
*Organ Donation NZ statistics
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
(Transcribed by TurboScribe.ai. Go Unlimited to remove this message.) Well, a harder conversation is your family member is likely to die, maybe
tomorrow, maybe tonight, maybe in two hours time, or maybe after
two weeks of a struggle.
(00:20):
And we're going to have to go through all of this together, uh, you and us and
the patient.
Um, and this is not an easy journey.
Um, and it will be marked by ups and downs and it will be marked by difficult
conversations and by grief and loss and, you know, highs and lows.
(00:46):
Um, and so the conversation about organ donation occurs after there have been a
number of other conversations.
This is at a loss conversations hosted by me, Timothy Giles, with people I meet
in my work as a funeral celebrant, life and death, the experiences, emotions,
(01:10):
issues, events that we all face, and some insights that can help when you feel
at a loss.
Stephen, thank you.
It's taken a couple of years, I think to get to get to this conversation.
(01:34):
And you're retired now.
I am finally, which you said, we're not gonna have the conversation until you
are.
So congratulations on achieving that.
Yeah.
Thank you.
I still do a little voluntary work for what used to be the Oakland district
health board.
Um, but I'm no longer employed and I'm no longer registered as a medical
practitioner anymore.
(01:55):
So in that sense, I'm certainly retired.
Can I look back on your career for a moment?
And my key focus today is around organ donation and the complexities and some
of the clarity around that.
Professionally, how long were you focused?
Or have you been focused on organ donation?
(02:17):
Um, well, there are periods in my life where I've been more focused on it than
others.
And in the latter part of my career, I was very focused on it, uh, from, uh,
about 2005, I suppose.
Um, but there have been other times before that when I was focused on it as
(02:40):
well at different times in its evolution in New Zealand.
My first exposure was when I was a, um, registrar, about two years out of
medical school, um, working in the department of renal medicine, um, at
Auckland city hospital.
And I got exposed to kidney transplantation.
(03:02):
Um, they, uh, were very early in starting kidney transplantation here.
And, um, it was very obvious to me how transformational, uh, an organ
transplant was for a patient with renal failure.
Obvious how?
Oh, they became utterly transformed in a physical sense, um, uh, with, uh, an
(03:31):
improvement in their general health.
Um, firstly, um, you know, they no longer needed some kind of dialysis or renal
support, but, um, as well as, uh, not needing to be sort of tied to machinery
at times and, uh, having restrictive, um, diets, you know, limiting salt
(04:00):
and limiting protein and limiting, uh, potassium, uh, quite a lot of rigor
involved in it.
Um.
Yeah.
Loss of quality of life.
Very much a loss of quality of life.
And what we saw was a return of quality of life.
People, people literally got younger in front of your eyes and they said, I can
(04:24):
play tennis.
You know, I've never been able to play tennis for 20 years and I can play
tennis again, or I can feel my fingertips because I no longer have a sort of
neuropathy in my fingertips.
And just the sense of touch has improved.
My vision is clearer.
Um, I sleep better.
Wow.
I mean, all sorts of little things.
(04:44):
And of course the way in which that flowed into their relationships with their
family, you know, I could, I can have children.
I never thought I could have children.
Um.
So this was a transformation, you said.
It is a transformation.
And it sparked something for you that.
Well, well it did.
Um, and it sparked it in, in all of us who were involved in transplantation and
(05:07):
the nurses, the seniors, the junior docs, everybody, you could see it and the
patients.
Um, it was, it was a very much a miracle and it wasn't just confined to kidney
transplantation, although that was what I was mostly exposed to.
Um, because that was what was going on in New Zealand at that time.
I mean, this was the late seventies.
(05:27):
Um, but the same type of transformation, uh, was taking place in different
places around the world where other organ transplantation was very much in its
infancy.
Um, you know, heart transplantation, um, uh, had been around for a little
while, but it was very tough going.
And, and similarly, liver transplantation was, uh, tough going, um, done in
(05:53):
very few places.
And, and, uh, a lot of patients, uh, died prematurely after the, um, after the
transplant, you know, it took a long time to learn the science of it, but in
all of those cases, it was transformational.
And so it wasn't just about kidneys, but it was about the process of organ
(06:15):
replacement and how that could utterly transform people's lives.
Um, but I'd become exposed to intensive care a little bit before I was exposed
to renal medicine.
So you like emergency?
I didn't, I, I, I, I took a long route to get, to become an intensivist.
(06:38):
But, um, when I, when I was finally a medical student, I worked in, um, uh,
infectious pediatric infectious diseases.
Um, and that was co-located in a building, um, which had, um, the intensive
(07:00):
care unit, the general intensive care unit.
It was known then as the acute respiratory unit because it began in a, as a
respiratory support center, really.
Um, and, um, as part of my, uh, pediatric duties, we used to have to cover the
ICU as a junior status closest doctor down the corridor, get in here.
(07:23):
Yeah.
There were three wards stacked one on top of the other.
Um, the ICU was sandwiched in between two pediatric ID wards, one upstairs, one
downstairs.
And so, you know, you could take a kid from upstairs and run them down the
stairs, or you could take a kid from upstairs and run them up downstairs and
run them up the stairs.
Um, that the ICU was run by, um, uh, a small number of consultants.
(07:49):
Um, there were only three, um, and you know, they worked their asses off.
So connect me to the, the donation organ donation.
Well, this is where, this is where deceased donation began because the patients
who donated their organs died in the ICU.
(08:11):
And I, you know, I, I saw patients die in the ICU and I saw patients in the
ICU, um, donate their organs.
And so I saw, uh, secondhand, uh, what it was like for, um, the staff who were
managing that process, who were talking with the family or looking after the
(08:35):
dying patient and liaising with the transplant services and all the other work
that was involved in that.
But I wasn't personally involved in it at that stage, except as a student, as
an observer.
But let, after that, I, I worked in the ICU, um, as a, as a registrar.
Can I ask you about those conversations, please, Stephen?
(08:56):
Yeah.
Well, let me just say my first conversation of, of this myself was as a renal
registrar, because in those days, these conversations were held not by
intensivists, but by the renal medicine doctors, the people who would be
looking after the recipients.
(09:17):
So what's the conversation you had to have?
Well, you had to have a conversation about, this is a situation where, uh, your
relative, uh, could donate their, in this case, kidneys for transplant.
And, and the kidney doctors would have this conversation and I would sometimes
(09:40):
sit in on it and hear what they said, but it was done as a, as a sort of
outsider team.
So the intensive care team would introduce the family to these people who
would, who would come and discuss donation.
Later, later it, this whole business changed in the eighties and the, the
(10:00):
conversation was no longer held by transplant professionals, but it was held by
intensive care doctors.
Um, it was thought, uh, wrongly, I think, but it was thought with some
reasonable a priori justification that families might think that you were
(10:22):
conflicted if you were asking them for discussion about donation, you know, are
you really concerned about my relative, or are you just interested in the
organs, or maybe you don't want to treat them so, so, uh, intensively.
So in, in the, in the decades of practice since that you've been at the very
(10:47):
forefront of in Aotearoa New Zealand, right?
Where is the conversation now and where do you believe it's best done?
How, how, how do, how have you done it when you think this is how it needs to
be?
Well, now I think there is a much more, um, uh, clear and, uh, established, um,
(11:09):
and, um, uh, I won't say, um, defined because that's not quite the right word,
but, uh, there's much more of an understanding about what the conversation, uh,
should entail and, um, how it might be best done in order that the family is
(11:33):
well supported during the process and, and that their needs are met and that
they're not, you know, pushed into something that they either don't want to
discuss or, uh...
So how is that done?
How do you support that, that family?
So it's a pretty intense time.
I've, I've, my close family member and my partner and my child and my parent is
(11:58):
there dying or dead and this conversation has to happen.
How do you support?
Well, I think you have to understand that, um, this conversation takes place,
not as the first conversation about difficult matters.
In fact, compared to the conversations which have gone on in the days before,
(12:21):
this is, um, a much easier conversation.
Wow.
What's an easier, what's a harder conversation than that?
Well, a harder conversation is your family member is likely to die.
Um, maybe tomorrow, maybe tonight, maybe in two hours time, uh, or
(12:44):
maybe after two weeks of a struggle.
Um, and, uh, we're going to have to go through all of this together.
Uh, you and us and the patient.
Um, and this is not an easy journey.
Um, and it will be marked by ups and downs and it will be marked by difficult
(13:06):
conversations and by grief and loss and, you know, highs and lows.
Um, and so the conversation about organ donation occurs after there have been a
number of other conversations.
It's very, very rare that this is a topic on the first conversation.
(13:29):
Um, it does happen, but it's very, very unusual.
Mostly it's the second or the third or the fourth or the fifth or whatever
family meeting between a senior medical person and the family.
And the, the, the meeting is also always attended by the bedside nurse who's
(13:52):
associated with that patient.
We understand that patients in the ICU are nursed on a one-to-one basis.
So there'll be a nurse who's responsible for that patient, um, who will come to
all of these meetings.
And what are the expectations of that nurse?
Uh, well, the, the, I should, I don't really speak for the nurses, but the
(14:13):
nurses, the nurses see themselves as, um, kaitiaki of the patient and their
wellbeing.
So they are, in a sense, uh, they are an advocate for the patient, but they
also see themselves as, um, uh, having a very similar role towards the family.
(14:34):
They are there to support the patient.
The family, um, are at the bedside often for a long time.
You know, they may be there for four hours.
Sometimes, you know, people want to be at the bedside all the time, uh, 24
seven.
Um, and the nurses obviously are seen by the family doing their work and they
(14:58):
strike up a conversation and, uh, they develop their own personal relationships
with those people.
They get to know a lot of the dynamics of, uh, the family.
Where does the patient fit into the family?
Uh, what, what's going on in the family, which is predating all of this.
(15:20):
What baggage do people bring to this?
Um, you know, what are the wild cards that you need to watch out for?
Even something simple as the name on the patient's sticker isn't actually what
people call themselves.
You know, the nurses will always know what, what the family and the patient
(15:41):
call them, you know, and so their role in that is not to be, uh, involved in
the discussion about organ donation, but to support the family in their grief,
um, and to, as it were, provide an, uh, an oversight, another pair of eyes to
(16:05):
the conversation.
And if the conversation is going badly, if the nurse can see, for example, that
the family haven't understood what has been said, then they may well interrupt
and say something like, I think this needs clarifying, or I'm not sure that you
understood this, or I'm not sure that the family understood this.
(16:27):
And, and that gives an opportunity for, uh, you know, uh, slowing the process
and, uh, uh, change of words and change of direction and, or maybe a pause, you
know, like today is not a day where we should take this conversation further.
Uh, but we'd like to meet again, perhaps tomorrow.
(16:51):
It sounds when you are in a time pool, a high pressure situation as the
clinician, and you have someone whose life can be potentially transformed in
the room next door.
Very frustrating to have these very human, but very frustrating.
(17:16):
No, it's not at all frustrating.
It's absolutely is not at all frustrating.
It's fulfilling.
It's only frustrating.
If you have your own personal agenda, which is overriding the agenda of the
people that you're there to serve, you're there to serve these people, the
(17:41):
family and the dying patient.
And your job is to look after them and do it, do it well, do it, you know, with
professionalism and pride and expertise and the best you can bring to it.
And, uh, to do that and to have a successful engagement with the family where
(18:04):
they do relate to you.
And there is really a meeting of minds and a good understanding and sharing of
feelings and thoughts, then that's very fulfilling.
It's not frustrating at all.
If it was easy, someone else would be doing it.
It interesting as I wish we had a camera on you because as you, as you said
(18:27):
that your face softened, your eyes came alive and there's a sense of delight in
you around this, but it's hard.
Well, it's not easy, but, um, but it's not as hard as people make it out to be.
People make it out to be hard because they bring all kinds of preconceptions to
(18:50):
what they think the conversation will be like.
But in fact, you know, it's just an ordinary bunch of people talking to another
ordinary bunch of people about a very important life event.
Um, and it's not marked by formality or, um, uh,
(19:16):
you know, um, standoffishness or it, it really is.
Um, yeah, I won't say it's sort of friendly, but it's, it's cordial and it's
about mutual respect and about mutual trust.
(19:42):
I'll trust you to be upfront and be honest.
Um, and, uh, you know, I'll respect you for that.
And in a sense I expect the same as well, but I have to earn people's trust.
You know, it doesn't just come, uh, free on a platter.
(20:03):
I imagine it also comes with a hugely varied number of reactions and responses.
Oh yes.
And that's part of the delight really, is that, um, you've got no bloody idea
whatsoever about what you're going to get into.
And that's, as I say to people, revel in that because, uh, you know, if it were
(20:26):
easy, if it were programmed, then someone else would be doing it.
So it wouldn't be you.
You have to be creative.
If I was walking into this sort of situation and this, and this conversation,
now I, I, I work in funeral celebrancy and, and, and meet families later and I
meet them in times of grief.
And I, I see a range of reactions and the things that you talked about with the
(20:47):
nurse walking through things.
And as my daughter always tells me, you know, when I, when I talked to her
about a, uh, a challenging experience, she says, dad, none of us are our best
in grief.
You know, she says, bring, bring that every time.
Well, I think this is here.
Am I disagreeing with you again?
(21:08):
I think that although she, she put it, none of us are at our best in grief.
I think most of us are in our best at grief in our, are at our best in grief.
And that is that most people in grief with their grief, strip away a whole lot
(21:33):
of the defense and the, what you might call, um, aggressive defense that they
have.
And they, uh, perhaps, uh, without wanting to, or perhaps without meaning to,
they reveal parts of themselves that, uh, normally they keep hidden.
(21:57):
Um, and in that sense, that's what I mean by you see people at their best.
They, they let their guard down.
They share things, um, that they might not have told anybody about.
Private conversations that they've had with other family members or with the
(22:19):
dying patient or, you know, experiences from their childhood or their own
difficult relationships, all sorts of stuff you hear about.
Um, and when they do and they realize it's okay to do that, you know, I don't
get, I don't get judged for it.
(22:39):
I just get it listened and I get people, I get to see that people understand
me.
Then that's what I mean.
You get to see people at their best.
And the, and the same thing happens, um, among the staff, you know, when people
share those kinds of things with professionals, the professionals rise to the
(23:03):
occasion too.
And they think, you know, I can do, I can do good here.
I can do better here.
You've advocated for decades around organ donation and led and delivered it.
And, and, but for clinicians at all levels and parts of this process to commit
(23:28):
to and be part of organ donation, there's a new skillset.
They have to learn new skills.
What response have you found from, you know, your peers?
I mean, are they overwhelmingly enthusiastic?
Are they like, I like the idea, but it's very difficult.
I think, um, two things.
There's a spectrum of reaction.
(23:53):
And secondly, uh, people move over time quite quickly.
When shown that this is not as hard as your fears may have, and you already
have 90% of the skillset to do this.
(24:15):
And what you really need is a little encouragement and support, and maybe a
little bit of, um, teaching, coaching, perhaps more than anything
about, uh, and, uh, an understanding of what the family might be going through
(24:40):
just in a general sense.
And also about, um, how, how is it possible to choose words which are
plain and simple and unambiguous and sensitive and focused on the patient and
the family and not on the organ and the recipient?
(25:04):
Um, because this is the context that you're talking in.
You're not talking, uh, in the context of a recipient needing an organ.
You're talking in the context of a family losing a family member.
And once people have these concepts explained to them and have, uh, learned a
(25:28):
few phrases and a few words to say and not say, then they approach these
conversations with initially much more equanimity and then with a sense of
adventure.
You know, no, it's like you're standing at the, uh, at the seaside and you're
(25:48):
about to climb into a sailing ship and you're going to sail across, uh, uh, the
Mediterranean and you're going to go via a whole bunch of offshore islands as
you do.
They might be Greek, they might be Italian, they might be, you know, North
(26:08):
Africa, but you're going to bounce around off these things and eventually
you're going to get to the toe of Italy or somewhere.
Um, but exactly how you get there, um, it's not possible to predict at the
beginning.
You might find that there are dragons or that there's an offshore wind or, uh,
(26:32):
uh, you know, some pirate comes out of the left field and, and torpedoes your
boat.
Um, it's like that, but, but be confident.
You may not know the route, but you've sailed the Mediterranean, you've fought
pirates.
(26:52):
Um, you know, you've learned how to hide around the back of islands when the
weather gets bad.
At the worst, maybe you could throw an anchor down and, and stay put in the
shade for 24 hours until it blows over and then set sail again.
You don't have to do it all in one day.
And so when people understand these kinds of concepts, then it's a challenge
(27:17):
and it's an adventure.
And your eyes are sparkling.
And you know, how did it go?
Well, it was fantastic.
People say it was fantastic.
You know, I had no idea what was going to happen.
And this is what happened.
And it's an amazing story.
And you get lots of those.
And once people have had that themselves a couple of times, or they've seen it
(27:41):
as another member watching the conversation, because obviously the registrars
and the nurses, you know, they go and sit in on this.
Then, um, they change too.
You know, they think, yeah, this is something we can do.
And this is something which would be good for our department.
(28:03):
And yeah, maybe it's not actually easy, but you know, we're good.
We can do it.
And that gives us pride in our work.
It's, as you're talking through both the professional and the clinical side.
And I'm also reflecting still on the family experience or the decision making
(28:26):
of those who are caring about the patient.
They seem, they're very parallel processes, aren't they?
Or you can disagree with me again.
No, I don't think I disagree.
(28:49):
Yeah, they are parallel processes.
I mean, they're sort of reciprocating.
How does, if I have made the decision with whoever else is around me, that my
loved relative or partner or whomever donates their organs, how does,
(29:13):
how do we ever get to that experience that you've just described for the
medical team of like, you know what, it was wonderful.
Does that ever happen?
Yes, it does.
But I think you need to understand two things.
Firstly, that the degree of wonderful is not dependent on whether or not the
(29:37):
family choose to donate or not.
And that's a difficult concept for people to understand.
But it lies at the root of a lot of this.
It lies at the root of the expectation problem.
That is, to donate is good, to not donate is bad.
(Transcribed by TurboScribe.ai. Go Unlimited to remove this message.) Well, a harder conversation is your family member is likely to die, maybe
tomorrow, maybe tonight, maybe in two hours time, or maybe after
two weeks of a struggle.
(00:20):
And we're going to have to go through all of this together, uh, you and us and
the patient.
Um, and this is not an easy journey.
Um, and it will be marked by ups and downs and it will be marked by difficult
conversations and by grief and loss and, you know, highs and lows.
(00:46):
Um, and so the conversation about organ donation occurs after there have been a
number of other conversations.
This is at a loss conversations hosted by me, Timothy Giles, with people I meet
in my work as a funeral celebrant, life and death, the experiences, emotions,
(01:10):
issues, events that we all face, and some insights that can help when you feel
at a loss.
Stephen, thank you.
It's taken a couple of years, I think to get to get to this conversation.
(01:34):
And you're retired now.
I am finally, which you said, we're not gonna have the conversation until you
are.
So congratulations on achieving that.
Yeah.
Thank you.
I still do a little voluntary work for what used to be the Oakland district
health board.
Um, but I'm no longer employed and I'm no longer registered as a medical
practitioner anymore.
(01:55):
So in that sense, I'm certainly retired.
Can I look back on your career for a moment?
And my key focus today is around organ donation and the complexities and some
of the clarity around that.
Professionally, how long were you focused?
Or have you been focused on organ donation?
(02:17):
Um, well, there are periods in my life where I've been more focused on it than
others.
And in the latter part of my career, I was very focused on it, uh, from, uh,
about 2005, I suppose.
Um, but there have been other times before that when I was focused on it as
(02:40):
well at different times in its evolution in New Zealand.
My first exposure was when I was a, um, registrar, about two years out of
medical school, um, working in the department of renal medicine, um, at
Auckland city hospital.
And I got exposed to kidney transplantation.
(03:02):
Um, they, uh, were very early in starting kidney transplantation here.
And, um, it was very obvious to me how transformational, uh, an organ
transplant was for a patient with renal failure.
Obvious how?
Oh, they became utterly transformed in a physical sense, um, uh, with, uh, an
(03:31):
improvement in their general health.
Um, firstly, um, you know, they no longer needed some kind of dialysis or renal
support, but, um, as well as, uh, not needing to be sort of tied to machinery
at times and, uh, having restrictive, um, diets, you know, limiting salt
(04:00):
and limiting protein and limiting, uh, potassium, uh, quite a lot of rigor
involved in it.
Um.
Yeah.
Loss of quality of life.
Very much a loss of quality of life.
And what we saw was a return of quality of life.
People, people literally got younger in front of your eyes and they said, I can
(04:24):
play tennis.
You know, I've never been able to play tennis for 20 years and I can play
tennis again, or I can feel my fingertips because I no longer have a sort of
neuropathy in my fingertips.
And just the sense of touch has improved.
My vision is clearer.
Um, I sleep better.
Wow.
I mean, all sorts of little things.
(04:44):
And of course the way in which that flowed into their relationships with their
family, you know, I could, I can have children.
I never thought I could have children.
Um.
So this was a transformation, you said.
It is a transformation.
And it sparked something for you that.
Well, well it did.
Um, and it sparked it in, in all of us who were involved in transplantation and
(05:07):
the nurses, the seniors, the junior docs, everybody, you could see it and the
patients.
Um, it was, it was a very much a miracle and it wasn't just confined to kidney
transplantation, although that was what I was mostly exposed to.
Um, because that was what was going on in New Zealand at that time.
I mean, this was the late seventies.
(05:27):
Um, but the same type of transformation, uh, was taking place in different
places around the world where other organ transplantation was very much in its
infancy.
Um, you know, heart transplantation, um, uh, had been around for a little
while, but it was very tough going.
And, and similarly, liver transplantation was, uh, tough going, um, done in
(05:53):
very few places.
And, and, uh, a lot of patients, uh, died prematurely after the, um, after the
transplant, you know, it took a long time to learn the science of it, but in
all of those cases, it was transformational.
And so it wasn't just about kidneys, but it was about the process of organ
(06:15):
replacement and how that could utterly transform people's lives.
Um, but I'd become exposed to intensive care a little bit before I was exposed
to renal medicine.
So you like emergency?
I didn't, I, I, I, I took a long route to get, to become an intensivist.
(06:38):
But, um, when I, when I was finally a medical student, I worked in, um, uh,
infectious pediatric infectious diseases.
Um, and that was co-located in a building, um, which had, um, the intensive
(07:00):
care unit, the general intensive care unit.
It was known then as the acute respiratory unit because it began in a, as a
respiratory support center, really.
Um, and, um, as part of my, uh, pediatric duties, we used to have to cover the
ICU as a junior status closest doctor down the corridor, get in here.
(07:23):
Yeah.
There were three wards stacked one on top of the other.
Um, the ICU was sandwiched in between two pediatric ID wards, one upstairs, one
downstairs.
And so, you know, you could take a kid from upstairs and run them down the
stairs, or you could take a kid from upstairs and run them up downstairs and
run them up the stairs.
Um, that the ICU was run by, um, uh, a small number of consultants.
(07:49):
Um, there were only three, um, and you know, they worked their asses off.
So connect me to the, the donation organ donation.
Well, this is where, this is where deceased donation began because the patients
who donated their organs died in the ICU.
(08:11):
And I, you know, I, I saw patients die in the ICU and I saw patients in the
ICU, um, donate their organs.
And so I saw, uh, secondhand, uh, what it was like for, um, the staff who were
managing that process, who were talking with the family or looking after the
(08:35):
dying patient and liaising with the transplant services and all the other work
that was involved in that.
But I wasn't personally involved in it at that stage, except as a student, as
an observer.
But let, after that, I, I worked in the ICU, um, as a, as a registrar.
Can I ask you about those conversations, please, Stephen?
(08:56):
Yeah.
Well, let me just say my first conversation of, of this myself was as a renal
registrar, because in those days, these conversations were held not by
intensivists, but by the renal medicine doctors, the people who would be
looking after the recipients.
(09:17):
So what's the conversation you had to have?
Well, you had to have a conversation about, this is a situation where, uh, your
relative, uh, could donate their, in this case, kidneys for transplant.
And, and the kidney doctors would have this conversation and I would sometimes
(09:40):
sit in on it and hear what they said, but it was done as a, as a sort of
outsider team.
So the intensive care team would introduce the family to these people who
would, who would come and discuss donation.
Later, later it, this whole business changed in the eighties and the, the
(10:00):
conversation was no longer held by transplant professionals, but it was held by
intensive care doctors.
Um, it was thought, uh, wrongly, I think, but it was thought with some
reasonable a priori justification that families might think that you were
(10:22):
conflicted if you were asking them for discussion about donation, you know, are
you really concerned about my relative, or are you just interested in the
organs, or maybe you don't want to treat them so, so, uh, intensively.
So in, in the, in the decades of practice since that you've been at the very
(10:47):
forefront of in Aotearoa New Zealand, right?
Where is the conversation now and where do you believe it's best done?
How, how, how do, how have you done it when you think this is how it needs to
be?
Well, now I think there is a much more, um, uh, clear and, uh, established, um,
(11:09):
and, um, uh, I won't say, um, defined because that's not quite the right word,
but, uh, there's much more of an understanding about what the conversation, uh,
should entail and, um, how it might be best done in order that the family is
(11:33):
well supported during the process and, and that their needs are met and that
they're not, you know, pushed into something that they either don't want to
discuss or, uh...
So how is that done?
How do you support that, that family?
So it's a pretty intense time.
I've, I've, my close family member and my partner and my child and my parent is
(11:58):
there dying or dead and this conversation has to happen.
How do you support?
Well, I think you have to understand that, um, this conversation takes place,
not as the first conversation about difficult matters.
In fact, compared to the conversations which have gone on in the days before,
(12:21):
this is, um, a much easier conversation.
Wow.
What's an easier, what's a harder conversation than that?
Well, a harder conversation is your family member is likely to die.
Um, maybe tomorrow, maybe tonight, maybe in two hours time, uh, or
(12:44):
maybe after two weeks of a struggle.
Um, and, uh, we're going to have to go through all of this together.
Uh, you and us and the patient.
Um, and this is not an easy journey.
Um, and it will be marked by ups and downs and it will be marked by difficult
(13:06):
conversations and by grief and loss and, you know, highs and lows.
Um, and so the conversation about organ donation occurs after there have been a
number of other conversations.
It's very, very rare that this is a topic on the first conversation.
(13:29):
Um, it does happen, but it's very, very unusual.
Mostly it's the second or the third or the fourth or the fifth or whatever
family meeting between a senior medical person and the family.
And the, the, the meeting is also always attended by the bedside nurse who's
(13:52):
associated with that patient.
We understand that patients in the ICU are nursed on a one-to-one basis.
So there'll be a nurse who's responsible for that patient, um, who will come to
all of these meetings.
And what are the expectations of that nurse?
Uh, well, the, the, I should, I don't really speak for the nurses, but the
(14:13):
nurses, the nurses see themselves as, um, kaitiaki of the patient and their
wellbeing.
So they are, in a sense, uh, they are an advocate for the patient, but they
also see themselves as, um, uh, having a very similar role towards the family.
(14:34):
They are there to support the patient.
The family, um, are at the bedside often for a long time.
You know, they may be there for four hours.
Sometimes, you know, people want to be at the bedside all the time, uh, 24
seven.
Um, and the nurses obviously are seen by the family doing their work and they
(14:58):
strike up a conversation and, uh, they develop their own personal relationships
with those people.
They get to know a lot of the dynamics of, uh, the family.
Where does the patient fit into the family?
Uh, what, what's going on in the family, which is predating all of this.
(15:20):
What baggage do people bring to this?
Um, you know, what are the wild cards that you need to watch out for?
Even something simple as the name on the patient's sticker isn't actually what
people call themselves.
You know, the nurses will always know what, what the family and the patient
(15:41):
call them, you know, and so their role in that is not to be, uh, involved in
the discussion about organ donation, but to support the family in their grief,
um, and to, as it were, provide an, uh, an oversight, another pair of eyes to
(16:05):
the conversation.
And if the conversation is going badly, if the nurse can see, for example, that
the family haven't understood what has been said, then they may well interrupt
and say something like, I think this needs clarifying, or I'm not sure that you
understood this, or I'm not sure that the family understood this.
(16:27):
And, and that gives an opportunity for, uh, you know, uh, slowing the process
and, uh, uh, change of words and change of direction and, or maybe a pause, you
know, like today is not a day where we should take this conversation further.
Uh, but we'd like to meet again, perhaps tomorrow.
(16:51):
It sounds when you are in a time pool, a high pressure situation as the
clinician, and you have someone whose life can be potentially transformed in
the room next door.
Very frustrating to have these very human, but very frustrating.
(17:16):
No, it's not at all frustrating.
It's absolutely is not at all frustrating.
It's fulfilling.
It's only frustrating.
If you have your own personal agenda, which is overriding the agenda of the
people that you're there to serve, you're there to serve these people, the
(17:41):
family and the dying patient.
And your job is to look after them and do it, do it well, do it, you know, with
professionalism and pride and expertise and the best you can bring to it.
And, uh, to do that and to have a successful engagement with the family where
(18:04):
they do relate to you.
And there is really a meeting of minds and a good understanding and sharing of
feelings and thoughts, then that's very fulfilling.
It's not frustrating at all.
If it was easy, someone else would be doing it.
It interesting as I wish we had a camera on you because as you, as you said
(18:27):
that your face softened, your eyes came alive and there's a sense of delight in
you around this, but it's hard.
Well, it's not easy, but, um, but it's not as hard as people make it out to be.
People make it out to be hard because they bring all kinds of preconceptions to
(18:50):
what they think the conversation will be like.
But in fact, you know, it's just an ordinary bunch of people talking to another
ordinary bunch of people about a very important life event.
Um, and it's not marked by formality or, um, uh,
(19:16):
you know, um, standoffishness or it, it really is.
Um, yeah, I won't say it's sort of friendly, but it's, it's cordial and it's
about mutual respect and about mutual trust.
(19:42):
I'll trust you to be upfront and be honest.
Um, and, uh, you know, I'll respect you for that.
And in a sense I expect the same as well, but I have to earn people's trust.
You know, it doesn't just come, uh, free on a platter.
(20:03):
I imagine it also comes with a hugely varied number of reactions and responses.
Oh yes.
And that's part of the delight really, is that, um, you've got no bloody idea
whatsoever about what you're going to get into.
And that's, as I say to people, revel in that because, uh, you know, if it were
(20:26):
easy, if it were programmed, then someone else would be doing it.
So it wouldn't be you.
You have to be creative.
If I was walking into this sort of situation and this, and this conversation,
now I, I, I work in funeral celebrancy and, and, and meet families later and I
meet them in times of grief.
And I, I see a range of reactions and the things that you talked about with the
(20:47):
nurse walking through things.
And as my daughter always tells me, you know, when I, when I talked to her
about a, uh, a challenging experience, she says, dad, none of us are our best
in grief.
You know, she says, bring, bring that every time.
Well, I think this is here.
Am I disagreeing with you again?
(21:08):
I think that although she, she put it, none of us are at our best in grief.
I think most of us are in our best at grief in our, are at our best in grief.
And that is that most people in grief with their grief, strip away a whole lot
(21:33):
of the defense and the, what you might call, um, aggressive defense that they
have.
And they, uh, perhaps, uh, without wanting to, or perhaps without meaning to,
they reveal parts of themselves that, uh, normally they keep hidden.
(21:57):
Um, and in that sense, that's what I mean by you see people at their best.
They, they let their guard down.
They share things, um, that they might not have told anybody about.
Private conversations that they've had with other family members or with the
(22:19):
dying patient or, you know, experiences from their childhood or their own
difficult relationships, all sorts of stuff you hear about.
Um, and when they do and they realize it's okay to do that, you know, I don't
get, I don't get judged for it.
(22:39):
I just get it listened and I get people, I get to see that people understand
me.
Then that's what I mean.
You get to see people at their best.
And the, and the same thing happens, um, among the staff, you know, when people
share those kinds of things with professionals, the professionals rise to the
(23:03):
occasion too.
And they think, you know, I can do, I can do good here.
I can do better here.
You've advocated for decades around organ donation and led and delivered it.
And, and, but for clinicians at all levels and parts of this process to commit
(23:28):
to and be part of organ donation, there's a new skillset.
They have to learn new skills.
What response have you found from, you know, your peers?
I mean, are they overwhelmingly enthusiastic?
Are they like, I like the idea, but it's very difficult.
I think, um, two things.
There's a spectrum of reaction.
(23:53):
And secondly, uh, people move over time quite quickly.
When shown that this is not as hard as your fears may have, and you already
have 90% of the skillset to do this.
(24:15):
And what you really need is a little encouragement and support, and maybe a
little bit of, um, teaching, coaching, perhaps more than anything
about, uh, and, uh, an understanding of what the family might be going through
(24:40):
just in a general sense.
And also about, um, how, how is it possible to choose words which are
plain and simple and unambiguous and sensitive and focused on the patient and
the family and not on the organ and the recipient?
(25:04):
Um, because this is the context that you're talking in.
You're not talking, uh, in the context of a recipient needing an organ.
You're talking in the context of a family losing a family member.
And once people have these concepts explained to them and have, uh, learned a
(25:28):
few phrases and a few words to say and not say, then they approach these
conversations with initially much more equanimity and then with a sense of
adventure.
You know, no, it's like you're standing at the, uh, at the seaside and you're
(25:48):
about to climb into a sailing ship and you're going to sail across, uh, uh, the
Mediterranean and you're going to go via a whole bunch of offshore islands as
you do.
They might be Greek, they might be Italian, they might be, you know, North
(26:08):
Africa, but you're going to bounce around off these things and eventually
you're going to get to the toe of Italy or somewhere.
Um, but exactly how you get there, um, it's not possible to predict at the
beginning.
You might find that there are dragons or that there's an offshore wind or, uh,
(26:32):
uh, you know, some pirate comes out of the left field and, and torpedoes your
boat.
Um, it's like that, but, but be confident.
You may not know the route, but you've sailed the Mediterranean, you've fought
pirates.
(26:52):
Um, you know, you've learned how to hide around the back of islands when the
weather gets bad.
At the worst, maybe you could throw an anchor down and, and stay put in the
shade for 24 hours until it blows over and then set sail again.
You don't have to do it all in one day.
And so when people understand these kinds of concepts, then it's a challenge
(27:17):
and it's an adventure.
And your eyes are sparkling.
And you know, how did it go?
Well, it was fantastic.
People say it was fantastic.
You know, I had no idea what was going to happen.
And this is what happened.
And it's an amazing story.
And you get lots of those.
And once people have had that themselves a couple of times, or they've seen it
(27:41):
as another member watching the conversation, because obviously the registrars
and the nurses, you know, they go and sit in on this.
Then, um, they change too.
You know, they think, yeah, this is something we can do.
And this is something which would be good for our department.
(28:03):
And yeah, maybe it's not actually easy, but you know, we're good.
We can do it.
And that gives us pride in our work.
It's, as you're talking through both the professional and the clinical side.
And I'm also reflecting still on the family experience or the decision making
(28:26):
of those who are caring about the patient.
They seem, they're very parallel processes, aren't they?
Or you can disagree with me again.
No, I don't think I disagree.
(28:49):
Yeah, they are parallel processes.
I mean, they're sort of reciprocating.
How does, if I have made the decision with whoever else is around me, that my
loved relative or partner or whomever donates their organs, how does,
(29:13):
how do we ever get to that experience that you've just described for the
medical team of like, you know what, it was wonderful.
Does that ever happen?
Yes, it does.
But I think you need to understand two things.
Firstly, that the degree of wonderful is not dependent on whether or not the
(29:37):
family choose to donate or not.
And that's a difficult concept for people to understand.
But it lies at the root of a lot of this.
It lies at the root of the expectation problem.
That is, to donate is good, to not donate is bad.
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