29 May 2011

Living changes everything

My patient invited me to his funeral.


 He asked for my phone number so that his daughter can call me when he dies (he’s dying). He asked for my phone number so that his daughter can call me when her daughter, his granddaughter is born – she’s due in August. He might be around. He might not be around. My patient said that maybe I can see photos of his granddaughter, maybe I can see her grow.
He won’t see that.

My patient invited me to his funeral. It felt sacred but not strange. This many months, years into med school, I’ve learned what boundaries are right for me. I’ve learned that my patients – most of my patients, the ones I truly have relationships with – will not cross those boundaries. So I wrote down my phone number and my email. And maybe his daughter will contact me.

I’m on the palliative care service, now. One week gone with one week left. I’ve been here before, with dying patients – even before I was on this side of the medical line. Cameroon. Kenya. I’ve seen babies die. 
And this year, I’ve had patients die in other hospitals, on other services (this year of medicine – everything I’ve written – actually takes place in 7 different hospitals, thus far). None of my patients who died,  previously, were seen by palliative care. They may have died after everyone involved had decided to stop working on curative treatments. Possibly curative treatments or impossibly curative treatments.

It’s hard to not feel like the angel of death, sometimes. I’m learning how to talk to patients about death. They know, I know (doesn’t make it easier for me to say it).  I’m not announcing the news – though I’ve been a part of announcing cancer diagnoses, in the past. Fear of death but not death – not yet. It may be new news, it may be old news, it may be something they’ve known instinctively for a long time, they haven’t wanted to know or realize, or they’re no longer able to communicate directly and it’s the families that are communicated, being communicated with, making decisions.

Coming in on a consult, the first visit with palliative care, explaining what the service does is tricky. It’s not about death, not exactly. It’s about supporting patients’ goals of care, what they want from the hospitalization, how to treat their symptoms, and what they need now – physically, psychologically. It could be near death, it could be farther death, it could be a new, chronic, serious diagnosis – likely one that will result in degenerative disease or a somewhat hastened death. It’s patients who are very, very sick and potentially going to be cured. Potentially. Being on chemotherapy, ventilation – the proverbial “machines”, the “lines and tubes”, the “machines keeping you alive” – not contraindications.
Not usual.

For patients who’ve recently been told they’re dying, which may be in the form of “not eligible for further chemotherapy” (the “nothing else we can do” – which isn’t nothing, but isn’t a cure) – it’s hard not to feel like the angel of death. That, I’m not used to.

One patient’s family told me that they were frustrated and that they knew the oncologist (cancer specialist) was frustrated, as well. He had nothing else to offer – so he called the team that isn’t ever going to talk about a cure. Doctors don’t like the feeling of “nothing else” – particularly oncologists, I think, though/since it may happen to them more than to some others. But stopping trying-to-cure treatments is part of “do no harm.” That’s the best known part of the Hippocratic (now Lasagna) Oath – but it includes, also, “do good.” Balance of action/inaction. And “do no harm” may include, at times, not giving medications, not doing surgery, not doing, exactly, what a patient’s family may ask for (with an ethics consult).If harms vastly outweigh the benefits. If, as a surgeon, you know that the patient is vastly more likely to die on your table than to live and helped – you shouldn’t do the surgery. If you know that further rounds of chemo are going to be just poison and not medicine – you shouldn’t do it.

Good medicine isn’t always about giving or practicing or employing modalities.

I don’t have so much medicine. Not yet. I have some, I can contribute, and I can care for patients. What I have the most of is time. It’s fourth year now – there is less time than in third year. And/or, I’m supposed to be more efficient. Less scared, less intimidated. This past week, I’ve had four patients. (Third year, I never had that many). Granted, on this service, they take less time – medically. And some want or need more than others. Take Mr. P, the patient who invited me to his funeral. I met him on my first day. For various reasons, he has no particular place to go, no money, and no chance of taking care of himself, anymore. He does have a supportive daughter, who is close to him. And his daughter is pregnant. Communicating through a translator (he’s Vietnamese), we talked – at first, this seemed stilted. The fellow on the service told me she didn’t think he was depressed (in patients with “terminal” diagnoses, weeks-to-months-to-years, this still surprises me). He’s not hopeless, she said. He does want to be around for his granddaughter’s birth – even though he doesn’t think it’s going to happen. Meeting with his daughter, later, she said she’d asked him to write a letter to her future daughter – and he hadn’t wanted to. There, there something I might be able to do. So I mentioned it. And again. The chaplain mentioned it. And again. I went in and mentioned it, again. He said he wasn’t sure what to write, but he’d think about it, and then four visitors walked in, so I left.

When I returned, the following morning, he was sitting up in bed, wearing glasses, writing in a red-bound notebook. He had already covered many pages.

In the afternoon, through the translator phone, we transcribed it in English. He read it into the phone. The translator translated to me – and I wrote as quickly as I could (Mr P used a very good speed, pausing to give me enough time for phrases) .The translator, as she spoke, was crying. She’s a medical translator – used to translating exactly and impersonally. This was different. I was writing too fast to feel as much – wishing I still remembered short-hand, from the brief class in 5th grade, and making up my own as I went along, planning to type soon so I wouldn’t forget the semi-legible words. I didn’t tear up until I was typing, later, and I read the phrases in order. “My dearest granddaughter,” he began, telling me he wrote that because he didn’t know her name. But the letter was full of love for her – this future-dwelling letter girl. And full of love for her mother, his daughter.
Scribe, not narrator.
(one thing I’ve learned – what sounds like a lot of words to me, in Cantonese – isn’t. Maybe I’d feel that way about a lot of languages I don’t understand a word of (no, I have approximately one now) – but I always think there are more words than there are) .

He told me he’s going to keep writing every day.

Unbelievable, incredible, sacred privilege. I was entrusted with this. And it’s a job anyone could do – all I did, technically, was write down what the translator said. But I was there because it’s a hospital and he’s “my” patient and this is what he needed, what he wanted for his health and comfort and the health and comfort of those he cares about most. “Legacy work” they call it, “the dignity of dying.”

I have barely-can-vote patients who are dying. I have have-been-living-with-disease-for-decades patients who are dying. I have patients who don’t want to “live like this” – they can say – or they expressed it earlier and it’s up to their families to say.

It isn’t, necessarily, a glass-half-full thing.
If medicine is about life – and it is – than we’re not helping patients die (even euthanasia, arguably, could be related to quality of life. But that’s an entirely different topic) .

We’re helping patients live – how they want to live – with the time they have that we’re terrible at predicting (doctors notoriously over-estimate how long patients may have. Patients may not want to read this – and if they do, they can say it’s not their doctor. That’s fine) .

The point is and always was about the patients. Do no harm, do good, to…  and for…
And when the scientific knowledge has reached its limit – do good is what we can do, anyway, and do no harm is not doing what we can’t do or can do but that the patient doesn’t want.
(In my French etymological dictionary – the entry for medicine starts with “Art that has for its objective protecting health and healing illnesses.” Art. Certainly isn’t a science).


"Writing allows you that.  Approach
words with a scalpel.
You reopen scars without new
wounds, or lengthening. 

The firm white line –
a rope that binds you, if
not to this life,
to the living."


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