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I'd often wondered why after being told about being told
that I had a deadly disease, everyone seemed to be trying to lift my spirits. Everyone
but my doctor.
In the end, he didn't give me a direct message of hope,
ever. Not once did he say something like "Don't worry, you may have a 10 -
20% chance of surviving, but that doesn't mean you're a goner," or "I
know it seems hard now, but if you go through this, you may just survive and
come out a better person," or "It's okay kid, those other doctors suck
compared to me."
And I can see why. As a doctor, you can't sugarcoat bad news
to a patient. You just can't. You've got to be honest to them, no matter how bad
it may seem. You can't go into every room and cry out "Don't worry mate,
you'll be fine. Just give it a few weeks."
Giving people false hope will, in the overwhelming majority
of cases, be more harmful than telling them the honest truth. No matter how bad
the news may be. To be given that hope and then have it taken away when you are
told that you're terminal, or when you realise that your life is now filled
with medications and restrictions when someone told you it'd all be the same is
deceitful, and just cruel.
And the worst thing is, if you do that as a physician, that
patient, or his family and friends will never forgive you. And that's not easy
to take. In fact, it's devastating.
Doctors are, in the end, human.
Yet they still have one of the most important
roles in helping people in their times of need, often second only to that of the
patients themselves. And their opinion, words and messages are more often than
not held in the highest regards by those who they're caring for. They're the
professional. Of course their opinion matters.
In my case, I held my doctor's words in the highest regard.
He was the one who knew about my condition, the one who was guiding my
treatment, the most vital part in my battle with cancer. And, if you've seen my last post, you'd know that I'd managed to see his words in another light to manufacture my own hope.
But not every patient will be able to do that.
Some will resign themselves to believing that a bad prognosis
or survival chance is equivalent to certain death. They may believe their life
is cursed by their chronic condition, or that they're inferior and
inconsequential because of their learning condition.
Being a doctor isn't only about treating a condition.
You, as a doctor, have a position of power over someone who
is at their most vulnerable. You're often the one they trust the most, the one
they truly believe, if only because you know more about what's wrong and how to
fix it than they are. You therefore have a duty to help them out emotionally
and mentally as well as physically. And to do that best, you should help them
past their despair and try your best to make them happy beyond that.
You could be the
only one who can do that.
You should remember to be honest. You can't, and shouldn't make
up stats or figures or make blithe statements to deceive a patient of their
condition. You owe that to them, and yourself.
And you've got to understand that some people just won't
make it.
And that if it comes to that, they have to know.
No-one is immortal.
But how do you hit that balance between giving hope and
deceiving someone?
It's not easy. Remember each person is different. And that
some will not, or cannot, make themselves accept their disease and move past it.
But that shouldn't stop you from trying to pull a patient out of their angst
and misery after they've heard bad news.
You won't happen able to impart hope straight away. They are
likely to go through the 5 stages of grief - denial, anger, bargaining,
depression and acceptance, even if they haven't been given a death sentence. I
know I did in my condition and I've seen it in others with different diseases
to me in my life too. You have to try to get them past that before you can
start to give them hope, or happiness.
Maybe you could try referring them to a psychiatrist. Maybe
you could remind them of the things on their side - perhaps, like in my case,
their youth or things like their faith or support network. Maybe you could remind
them of their usual optimistic outlook, of their beautiful personality or even
of their stubbornness and why that person wouldn't be letting a little disease
or condition pull them down. Maybe it's as simple as giving them someone to
talk to - someone to understand them.
Or maybe you won't have to do anything. Maybe you can't.
They may, like me, come around themselves or with the help of those close to
them. They may be unable or unwilling to put their grief behind them.
In the end, you've still got to try.
But your responsibilities as one who may have the
biggest impact on how they deal with their disease go even further than just
getting them past their misery.
After getting through those 5 stages, I believe there's another stage a
person can achieve. But unlike the other five, not everyone will go through it. The
best word I could think up to describe it is optimism. But it's not perfect, as
it can imply it's only about someone believing they're going to get better.
As a someone who they
trust, you should be trying to move them there too.
That's where it gets hard though. You mustn't make them think that
they're cured, or will be 100%, or that they will have a completely normal life
afterwards or that there wouldn't be pain to come in the future. But you have
to convey to them that it doesn't mean that they can't be happy, or at least
content in their struggle, or in their acceptance of fate. And if they do have
a chance, you'll want to give them hope that they're going to get better.
But how do you do this?
First of all, be honest to them.
Remember, you can't and shouldn't kid them. But once they've
accepted their diagnosis, try to make them see their new life from a different,
more positive perspective.
Remind them that it's your job to tell them the truth, no
matter how hard it may be. But then make them realise that they'd give
themselves the best chance of surviving, or leading a normal life or just being
happy by being positive about their circumstance. The placebo effect isn't
considered in all medical trials for nothing. It may not always save someone
from their fate, but it's definitely able to increase their chances. And,
logically, if they could give themselves that chance, then they should try. Remind
them that even a 10 - 20% chance is still just that - a chance. And they should
do everything they can to be in that group of people who survive, both mentally
and physically.
Remind them that statistics don't mean anything to an
individual. It doesn't consider your personal circumstances. They may have
things on their side health-wise that others who made up that statistic or
chance didn't like their youth or a more promising prognosis on their
particular disease. Even if they don't, they will always have something on
their side emotionally. It can be hard to see that. But you can help them understand
that there will always be another way of looking at their condition.
Yes, they may have diabetes now and have a chance of developing
complications due to it later in life. But when they change their lifestyle,
eating habits and start to exercise, they will have a lower chance of
developing metabolic syndrome or other diseases. Yes, their broken leg may stop
them from work, school or sports in the short term, but it will allow them to
really focus on their studies, career, kids or relationships more intensely
than they could when they were healthy. Yes, their battle with addiction may be
hard, but will turn them into a stronger, more happy individual when they get
through it.
And no matter how hard it may seem, if you help them
acknowledge that it will be hard, but reassure themselves of the features that
will allow them to get through it, they will not be stopped by obstacles in
their journey as they know what to expect and know that it can't stop them.
Even if they don't want or can't find it in themselves to see
their disease in another way, get them to wonder why they should be sad or
depressed because of it. They're only harming themselves by doing that. And remind
them that they can make the most of life no matter what their condition. Even
if they're dying.
It won't be easy, it may take weeks, months or even years.
And it's not like every patient you'll ever have will want to think that way
just because you've burst in, cape billowing in the air currents of hospital
air conditioning and pronounced that they've got a chance or can be happy with
their lot in life. Some people will not have it in them, or may have been
through too much to see it in another light.
But your words will likely have more impact than a lot of
others in their life. You have a duty to try. Even if sometimes you may get
hurt. Even if you rarely get the time.
And if your support helps only one person live, or be happy
despite their problem in your entire career, then you'll be glad you did it.
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Your blog is amazing, thanks for sharing it. I am particularly taken by the idea of "content in their struggle", it's a beautiful turn of phrase.
ReplyDeleteI am very, very glad to know there will be doctors like you in the world.
Your blog is very moving and very well written. As a health professional who has experienced devastating illness you have so much to offer - to your colleagues and to patients. I absolutely agree with you that doctors should be totally honest without destroying all hope. As you say, an optimistic approach greatly increases chances of recovery (miracles do happen) but also makes a huge difference to the quality of life even if the outcome is the same. Thank you for sharing and I look forward to following your journey. Blessings <3
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