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When All You Can Do Is Watch

Luciali72x722Lucia Li -- “He who has a why to live can bear almost any how.”

The only thing that’s going through my mind is “oh my god, he’s 19.” He got a brain tumour, and he’s only 19. The surgeon’s talking about excision and radiotherapy, and I’m trying to compose my facial expression into something less shocked.

The whole family’s there -– mum, dad and son. Their reactions are heart-breakingly middle-class. Sat in the middle, as though being protected, the boy writes down key words “glioblastoma” and “high-grade” deliberately on a small pad of paper. No doubt there’s going to be a lot of wikipedia searching later, trying to make sense of the crashing into their lives. The dad’s pretty steely but he’s no fool; he places his arm around his son’s shoulders. The mum’s the only one shedding tears actually, and she’s restrained about it.

I don’t think the news came as a shock to them. And they all know what the answer’s going to be when the son asks, “I’m training to be a pilot; can I still fly?” No. That’s what he writes down in response. Meticulously, he writes that damning word down.

He acts as though it’s no big deal, like he’s just been told he can’t eat broccoli again. He doesn’t even seem to hear when the surgeon tells him he might still be allowed to drive. A career over before it starts. A life over before it starts. That’s what I saw today. And that’s what got to me. Most of neurology and neurosurgery is a futile fight. You prove to the patient that their taxes haven’t been wasted because you can tell them exactly why they’re getting those pesky symptoms. But most of what you do seems like blowing into the wind.

And as a student, you feel sometimes that you’re not even doing that. I imagine it as being by the side of a road, watching a terrible accident unfold. And not only can you not do anything about it, but the victim can see that you can do nothing about it. I have never wanted to be out of the room during a consultation, but today would definitely have been a good day for the ground to open and swallow me up. Every now and then, one of the family members would make eye contact with me. And I would return their nod or faint smile of acknowledgement, hating myself inside for being there. Because this is a moment of grief, and one deserves the right to experience grief in private. Did they mind me being there? Probably not. Are these situations unavoidable? Almost certainly. But it doesn’t help to be there when all you can you can do is watch.

November 2, 2008 in Lucia Li | Permalink

Comments

Thankfully Lucia you were doing more than just watching.
You were doing your job. And as a student it isnt your job to deliver bad news, to interpret the results and make diagnosis, no it's to learn.
Today, as you've said, was a tough day. But there is no real growth without pain.
What happens from here is deciding in which direction you'd like to grow. You can grow wiser, more compassionate and absorb the things that your doctor said that helped the family understand what was happening and instilled some hope. Or, you can grow more cowardly and want to run. Or, you can grow colder and shun any feelings that come up when you are in emotionally challenging situations.
The direction is totally up to you.
That's your job and that's what you are to do.

Your medical practice will never be about just one patient. It can't. That dedication is best left for your family and allow yourself to be involved in their lives intimately, not your patients.
Your patients will die.
Your patients will hate you.
Your patients will listen to what you say and STILL do the opposite.
And you can't let it get to you because that is the difference between a fantastic clinician who gives her/his all for each patient s/he sees and comes to the next one with a clean plate and one who is broken every time they experience a poor outcome.
Do your best. Do your job to your greatest ability and accept the outcomes that come from that with humility.

Posted by: Ted | Nov 4, 2008 2:53:02 PM

You're right about that being a frustrating situation. There isn't a lot you can do in that situation, though, except watch and try to learn how to be able to deal with these things in the future, because unfortunately, something like this is bound to happen to you (and all of us) again.

Posted by: Matt | Nov 4, 2008 2:53:30 PM

Very powerful post Lucia. Thank you for sharing. Sometimes, it helps to remember the patients who have benefited from our intervention. Sometimes, it just helps to be another human to help them as much as possible through their difficulty.

Posted by: Rob | Nov 4, 2008 3:08:45 PM

Very moving.... I pray you find the strength you need now and will continue to need for the rest of your career

Posted by: | Nov 4, 2008 3:59:42 PM

It is tough when a young person is diagnosed with a life threatening condition. I recently had a 26 year old, Iraq/Afghanistan war veteran present with nausea, severe headache, stiff neck for three days and dizziness on admission. He was worked up and scanning revealed a 2 x 3 cm mass on the left side of his cerebellum compressing the fourth ventricle. The differential included malignancy, toxoplasmosmis or some other etiology and was started on empiric toxo treamtment to which he initially responded; however, unfortunately, a few days after discharge he returned with worsening symptoms. A biopsy was performed and the path results revealed a diagnosis of CNS lymphoma. On the day I met him, prior to his diagnosis he began to cry when he spoke of his two near death experiences in the Iraq/Afghanistan campaigns. Real sad when someone so young survives war, only to return to a cancer diagnosis. I hope he will do well. Life is short, make the most of it...

Posted by: Manuel | Nov 4, 2008 5:18:52 PM

This post really touched me..
I'm also a nursing student and i hope that someday i can do my best with this kind of situation.
May God bless you always Lucia..
(--,)

Posted by: amor | Nov 5, 2008 11:39:03 AM

yup..that what we can do,,i got the same experience too last year..

Posted by: fakruradzi | Nov 5, 2008 11:44:05 AM

thanks lucia. your post is really thought provoking. it gives an insight to the everyday
experience of the doctor. One needs only be prepared to face such situations and
that courageously.

Posted by: Bunmi | Nov 5, 2008 12:10:36 PM

dear Lucia,
Thanks for sharing us,how difficult was this sitiuation but this is the life!!
your story reminds me of a similar sitiuation that happened to me few months ago, I'm a medical student and during the neurology round, we met a boy of nearly 6 years old who has Duchin myopathy, which is a heriditary muscle dystrophy ,that manifests with disabling progressive muscle weakness and lethally ends life by the age of 20 years old..
Imagine when you see a child who talks,kids and plays with you and you surely know that he'll be bed-ridden and die within few years..
not only that, his younger brother also was diagnosed few days later to have the same disease ,as it x-linked disease /-:
may God bless these chilren,their parents,
may God bless you Lucia ,
may God bless all of us.

Posted by: somaya | Nov 5, 2008 12:27:06 PM

As a doctor one is forced to face such situations frequently. But what i strongly feel is that one must not eventually become COLD to such situations and keep 'feeling' . I mean if one 'feels' , he can connect to the family members and atleast provide a moral support when actually there is nothing else much to do. Need not say to get overtly involved or be affected a lot by it.

Posted by: leena | Nov 5, 2008 12:42:34 PM

Yeah, it was a very difficult situation. It put us, medical students in a dilemma. We felt for the patients, but ironically there's nothing we can do, to help...maybe just lend an ear. I had experience with a 15 year old boy who was diagnosed with multi focal brain tomour, yet he and his family haven't told about the bad shocking news, as still waiting for surgeon specialist to break the news to them. I can hardly exchange eye contact with the family.

Posted by: eLLe | Nov 5, 2008 1:21:05 PM

"Heart-breakingly middle class" - so people's reactions to bad news have a classist slant? That line was a slap in the face for some reason, sounds condescending. Had to say so...

Posted by: JP | Nov 5, 2008 1:55:11 PM

I understand exactly how you feel. It's really frustrating when you are interpreting someone's fate and you are helpless to change it. As a house officer in one of the world's poorest nations, with the highest maternal and infant mortalities, being in the situation you were faced with becomes commonplace, and as one stress-filled day drags onto the next, one tends to learn how to deliver bad news without allowing the tears to fall down.
Just yesterday, I had the task of telling a 22 year old woman's husband and father that the poor lady had passed away after being brought into hospital with a two-day history of ante-partum hemorrhage. She died because there was no means of transportation to bring her to hospital when the bleeding started. I can still hear the voice of her 4 year old daughter, asking her father "when is mummy coming out to meet us?" What response does the doctor give to such a question?
I think its just part of our responsibility as health care providers, to be able to balance compassion with duty, and to train our emotions to handle the worst possible scenario without breaking down. We are being looked up to for support by our patient in their time of need. We shouldn't break down, because we are the pillars that hold them up.

Posted by: Francis | Nov 5, 2008 2:08:55 PM

Lucia, to stand there by the pacient's side does help! It is in this moment, when we discover we have a devastating disease, that we discover we are so vulnerable, that we are humans. It is in this moment that we med students must lend our help to these people that are so needy and show them there are people who cares for them, to show them there still is some humanity in the world. Do not get away from this family, Lucia. Instead, get closer and support them as much as you can and practice the very meaning of the christianism: show them you have compassion and, by this, give them some dignity to live.

Posted by: miguel | Nov 5, 2008 2:11:40 PM

It's not just when it's the young ones either. Last month I met a lovely lady who was pretty much the same age as my mum, who had had a tiny melanoma removed from her cheek 9 years ago. We had to tell her it had spread to her lungs. She had two young children. I thought I was going to cry.

Posted by: Kirsty | Nov 5, 2008 2:23:05 PM

I understand exactly how you feel. It's really frustrating when you are interpreting someone's fate and you are helpless to change it. As a house officer in one of the world's poorest nations, with the highest maternal and infant mortalities, being in the situation you were faced with becomes commonplace, and as one stress-filled day drags onto the next, one tends to learn how to deliver bad news without allowing the tears to fall down.
Just yesterday, I had the task of telling a 22 year old woman's husband and father that the poor lady had passed away after being brought into hospital with a two-day history of ante-partum hemorrhage. She died because there was no means of transportation to bring her to hospital when the bleeding started. I can still hear the voice of her 4 year old daughter, asking her father "when is mummy coming out to meet us?" What response does the doctor give to such a question?
I think its just part of our responsibility as health care providers, to be able to balance compassion with duty, and to train our emotions to handle the worst possible scenario without breaking down. We are being looked up to for support by our patient in their time of need. We shouldn't break down, because we are the pillars that hold them up.

Posted by: Francis | Nov 5, 2008 2:25:38 PM

This is a very touching article. I witnessed something recently similar to this too. I felt rather awkward and confused because I knew that there wasn't anything I could say or do to make them cheer up. The patient knew she was going to die very soon and all she could do was cry. I didn't know whether I should just watch silently or reach out and comfort her. She mourned over her incompetence and diminishing strength. Even though I'm young and healthy, I can still feel how tragic that might be. When I'm down with something as little as a cold and can't sing properly I'm already feeling annoyed. Losing the capability to walk, talk, think, remember etc would be a whole different story. All I could think of was that if I was in a similar situation, I wouldn't want to live anymore either.

Thanks for a great article!!

Posted by: workaholic888 | Nov 5, 2008 3:29:29 PM

Am a medical student in Nigeria. During our surgical ward round yesterday, I came across a 20yr old boy who has a malignant testicular tumour with canon ball metastsis to the lungs and other features of cancer cachexia. I couldn't help but have a chat with the guy after the round. I found out that he knows about his predicament and seems to be in a bettter mood knowing fully well that he has a very short time left on earth. So I guess someone out there maybe a medicalstudent must have done a good work in reassuring him. I can still remember what my lecturer said during our clinical orientation- dat doctors dont cry visibly,they cry in their brains. Guess h'is right cos in the midst of the sympathy we shouldn't breakdown rather reassure them dat life is still worth living

Posted by: chijioke | Nov 5, 2008 3:35:28 PM

I have to agree with JP - the "middle class" bit was offensive and only acts to further the opinion among many people that doctors see themselves as being above everyone else.
If you want to make a good doctor and healer, try to avoid thinking in terms of class. Your patients will sense if you look down to them and will dislike you for it.
Apart from that slip it was a nice read. :)

Posted by: Chris | Nov 5, 2008 3:44:43 PM

Great post, Lucia, cannot agree with you more.

Not sure about you, but I feel even worse when I realize that I can probably explain why and how various blastomas occur and yet do absolutely nothing about it. Sometimes it just makes the time I'm spending poring through textbook after textbook rather disappointing, knowing that there will always be patients out there that I cannot help with.

Actually, the term "middle class" means something entirely different to me (probably because of my personal experience). I thought it was well-used.

It immediately evokes the image of the average family, who has always lived comfortably without worrying about money, suddenly beset with a life-threathening situation which they simply do not have the resources to get out of. They cannot get any help from social services either because their monthly accumulated family income exceeds the qualification limit for aid. It relates furthur to the theme of helplessness, because you know immediately that whatever options you can offer the patient, they will be pretty pointless because the patient cannot afford it. You want to help them too but you do not have the financial means either.

Posted by: ihlunn | Nov 5, 2008 6:51:10 PM

Thank u for sharing with us.
I'm really touched. And what's more, it provokes me into thinking about what I can do, and how I should do better.

Posted by: AthenaGuo | Nov 5, 2008 9:33:56 PM

The consequences of neurological diseases are mostly "can't do anything but watch" although you could diagnose correctly and explain well about the symptoms. And it doesn't matter whether the patient is 19 or 59, the impact is devastating to both the patient and family.
Thanks for sharing.

Posted by: Junni Keng | Nov 5, 2008 11:20:22 PM

yes, in poor country like ours we see...such death everyday.. not of cancer but of treatable disease. People from west would be surprised to know women here die of lack of health service during labour.
I've seen children die of malnutrition.

Posted by: rajiv | Nov 5, 2008 11:35:48 PM

It's not too different to standing for the first time next to an attending listening how he/she breaks the news of someone's death to the relatives and loved ones. Jot down everything the attending did and then rehearse it in your mind with your own improvements and personal touch. It's impossible that you didn't know you would face these situations in medicine, now we need to know how to be the best in the middle of them. Best wishes ...

Posted by: Rjgalindo | Nov 6, 2008 4:11:24 AM

It is undoubtly a heartaching situation you dealt with, i too had somewhat similar case today though he was a 70 years old man diagnosed with bronchogenic carcinoma and from this part of world where intensive medical treatment is far beyond the reach of normal people, i knew the diagnosis but no one in the team had the guts to deliver the message to him while he was totally assured the he will be cured, he told me no one in his family has ever got any serious illness, i tried to assure him everything will be all-right but my heart knew that i was lying to him as well as myself, there are many times in the life of a medical student when one feels that what the use of studying when one is not capable of saving other's life but even then we should not lose hope & it was really nice to read your post which made me to write my part of experience, i have had lots of such cases including a girl of 19 years with TB of spine, me and my friends with our pocket money tried a lot to do for her but she passed away, that day i felt that i am of no use to mankind but the power i gained that day to love human life was so worthy that now i feel that one day a time will come when no one will ever return with their disease back home.
God bless you always and may provide you the power to deal with such things in future.

A student
Mahesh Sharma
Nepal Medical College
Kathmandu Nepal

Posted by: mahesh bastola sharma | Nov 6, 2008 5:05:59 AM

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