M E N T O R

Family matters
Kirsten Vizor
TThink
sisters are obsessed
with his
bowel habits. I
“His
mean obsessed.
Every time I go in there I’m trapped
for ten minutes talking them through
it all. They just don’t get how unwell
he is, that he isn’t going to be making
it to his daughter’s wedding no matter
how much they want him to and
no matter how hard we try.”
Quiet smiles of understanding ripple
across the group.
Ward round, palliative care. This
happens a lot. There isn’t really a
sense of resentment from the staff,
but it does highlight an important
issue: many families feel they have
a right to be involved in their loved
ones’ end of life care. Do they?
Should they? In the face of stretched
resources, educated doctors, experienced
nurses, and limited time, do
they really get to be involved to any
real degree? Of course they do. In
the face of many reasons why they
should be kept well clear from any
decision making, kept a little more
than arm’s length from the drug
card, and politely requested to pipe
down when claiming they know best,
of course they should be involved.
Before I go on, I first want to address
the idea of ‘family’. When we ask
how involved families should be in a
patient’s end of life care, we should
be answering it with the patient in
mind. Traditionally, when we all
lived closer to one another in smaller
tribal communities, big life events
(weddings, births and, yes, deaths)
meant having your relatives around.
They saw you grow up, cared for
you, educated you, and loved you
for most of your life, but as UK demographics
shift so must our definition
of family. We scatter across the
world to chase our dreams, but we
still need those close bonds with people
who love us, and whom we can
love. Here, the term ‘family’ will refer
to anyone with whom the patient
has a real sense of love, trust, and
mutual support.
Let us briefly acknowledge the family’s
point of view; a nod to the
blindingly obvious. To face losing a
loved one seems an impossible, and
impossibly cruel, challenge. Dealing
with the enormous grief requires an
endless amount of patience, time,
and support. That support needs to
start before the end of their loved
one’s life. To be shut out by the
doctors only puts pressure on the
situation – pressure for the patient
to be the sole communicator about
their illness, pressure for the family
to learn about the disease process
and prognosis alone, and pressure
for everyone to keep their emotions
in check all the time for each other,
with no professional outlet. Distress
reverberates through a family pretty
quickly. If we can be a source of information
and a source of counselling,
we help families do what they
need to do: be there for each other.
There are many obvious reasons
why keeping people who know and
love our patients nearby might be a
positive part of their care package.
When someone is unwell, particularly
when reaching the end of their life,
there are many difficult conversations
to have and decisions to make.
Which treatment? Any treatment at
all? Where do you want to be when
you die? You’re tired, you’re poorly,
you’re probably on the spectrum of
feeling slightly uneasy to absolutely
petrified, and chances are you aren’t
going to remember every little salient
point the doctor or nurse makes
about your condition and care. Having
someone nearby to listen and
take notes, and who has the time to
go through all the facts again with
you later is hugely valuable. Having
someone else there, ironically, makes
it more likely that any decision you
make is your own.
We scatter across the
world to chase our
dreams, but we still
need those close bonds
with people who love
us.
Family involvement helps us manage
our patients and that is important.
We’re pack animals; for the most
part, we live and work in dynamic
circles and interact with other beings
as part of our basic instincts. We
rely on each other, look out for each
other, look after each other. Why on
earth should that stop right at the
moment that one of our pack needs
us?
For many reasons, actually. I am
not so idealistic as to think family
protection isn’t vulnerable to forcing
massive mistakes on a situation.
Families can pressure their people
to go through invasive and painful
treatments, against medical advice,
because they’re afraid of the in-
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