Changing the way we think and talk about the end of life
Transcriber: Emily Hinz
Reviewer: David DeRuwe
I’d like to tell you
about one of my patients.
I’m going to call her “Agnes.”
Agnes was fifty years old, a widow.
Mother to three lovely children,
age 25, 18 and 12.
So one evening, Agnes
went to sleep feeling perfectly fine.
But the next morning,
she just couldn’t get out of bed.
She couldn’t move; she couldn’t talk.
She was in a coma.
During the night, Agnes had had a stroke.
We found out later
that the type of stroke she had,
had left her in what
we call “locked-in syndrome.”
So while she couldn’t talk, couldn’t move,
the rest of her brain
was working perfectly fine.
Imagine being able to hear everything
that’s being said to you and about you.
Being able to understand
everything that is happening to you.
Being able to feel everything
that is happening.
And just not having a way
of communicating to the outside world.
Being diagnosed with any condition
that could potentially take your life
can be devastating,
both to the patient and to the family.
It doesn’t matter if this
is something sudden and unexpected,
like a stroke or even COVID.
Or something that is more chronic, like
cancer, heart failure, kidney disease.
For a long time, even for me,
as a healthcare worker,
knowing that one of my patients
had a diagnosis
that would eventually
take their life was scary.
I was not equipped
with the skills I needed
to have those types of conversations.
How do you even have
a conversation like that
and not take away
all of your patient’s hopes?
It felt as if admitting it to myself
meant I had failed at my job.
And this is true
for a lot of healthcare workers.
Our culture, in Zambia
and in Africa in general,
also does not make it easy
to have these types of conversations
about life, illness and death,
even when death
is a very real possibility.
How many of us here,
if we had a diagnosis
that would take your life,
would want to know?
What if it was a loved one?
Your spouse, your parent,
your child?
Would you want to know?
Would you want them to know?
So what tends to happen is,
between the patients,
families and the healthcare system,
we engage in a kind
of conspiracy of silence.
A don’t ask, don’t tell
kind of relationship,
where they feel as if
they can’t or shouldn’t ask,
and we don’t tell.
We hope that maybe
by not talking about it,
we can avoid death or at least delay it.
Our cultures and our beliefs tell us
that by talking about death
we bring it closer.
After a lot more learning on my part,
I came to certain realizations
which I would like to share with you.
The hard truth is,
no one gets out of life alive.
But sometimes what we are given
is an opportunity -
an opportunity to change the way
we think and talk
about life, illness and death.
A note in one of my patient’s files reads:
“There is nothing more we can do.”
And that’s usually where I get called in.
As a palliative care provider,
part of that is end-of-life care.
But palliative care
is so much more than that.
It’s about working
with patients and families
to help them define
what is important for them,
as they approach the end of their life.
As human beings, we have four basic
dimensions that are interconnected,
that define us.
The first is probably the easiest one
to think about: we are physical beings.
We want to be healthy,
we want to be free
of distressing symptoms,
we want to be free of pain.
There’s a Zambian phrase that says:
(Speaking in Zambian)
(English) “Only he who is in pain,
knows their pain.”
But what we can do is,
by talking about the pain,
help them deal with the pain
and be pain free -
even towards the end of their life.
We are also very emotional beings.
We are people with hopes and aspirations,
and then illness comes along
and changes that completely.
Replaces them with fears
and anxieties, even depression.
And those emotions, if not dealt with,
can actually make the
physical symptoms so much worse.
And so it’s important
that patients and families know
that it is safe and OK
for them to talk to us
about what they are feeling
and get the help they need.
As Zambians and Africans,
in general, we are very social.
We are husbands and wives;
we are brothers and sisters.
Illness changes our roles.
We go from being heads of households
to being dependents.
And that can be very distressing.
We worry about what happens
when we’re no longer there.
We worry about being
a burden to our families.
And if that is not addressed,
it can also make what we
are going through so much worse.
We are very religious people,
very spiritual,
and it is such a source
of hope in our lives.
A hope for a miracle, for a recovery.
Or at least a hope for the afterlife.
But sometimes our religions
and our beliefs
can also be barriers
to how we access care,
preventing us from seeking help
when we need it,
even accepting help when it is offered.
We may feel guilty
about what we are going through,
and we may take that
until we take our last breath.
Talking to people about life,
illness and death is not easy.
And yes, it is very important, very,
that we acknowledge whenever we
or a loved one has a terminal diagnosis.
But it is far more important
that we recognize that,
while we may not be able to add
any more days to their life,
we can always add more life
to the days that they have left.
And that is what palliative care is about.
It’s about working
with patients and families
to define what’s important for them.
It’s about making sure
that they understand
what is happening to them
and they are part
of the decision-making process.
It’s about making sure
they are free of pain,
even at the end of life.
It’s about taking the opportunity
to heal relationships,
to say what needs to be said
in their own words.
It’s also about taking the opportunity
to prepare ourselves for what comes next,
whatever we may believe
the next stage of our life to be.
My patient, Agnes,
died after a week in the hospital.
But in that short time,
we were actually able to find out
that we could communicate to her,
we could talk to her.
She could blink once for yes
and twice for no.
And in that small way,
she was able to tell us
whenever she was in pain,
which we treated.
But more importantly, she was able
to talk to her family, her children -
knowing that every word of love
they shared with her,
she was able to hear and understand,
and every comforting touch
that they gave her, she felt -
and they knew that she was there.
What I have learned through all of this
is that when we see our patients,
our loved ones,
as people first and not just
the diseases they have,
even at the end of life,
there is always something we can do.
Thank you.
(Applause)