The end

A medication order comes to the dispensary late in the day. It’s from the adult psychiatric ward, who only have an attending clinical pharmacist for half of the day, and a pager service for the rest of the day. Because the order is up to the 7th day and the bottom of the page is initialed by ward pharmacists from 3 different days that show they have reviewed the whole chart, it seems straight forward to supply with no need to page the busy ward pharmacist. Especially as the last initial was from the day prior. This shows me that all of the  work has been done to make sure the order is safe, appropriate, avoids their allergies, is monitored as necessary and is okay with all of the other medications. Not a lot of people see the work that pharmacists do to keep them safe while they’re in hospital, but those 2 letters at the bottom of the medication chart mean a great deal!

I go to dispense the medication in our software, and it comes up that the patient is in the oncology ward! Confusing, since the order clearly has the psych ward written on it. So I ask the oncology pharmacist and get a story like no other that I’ve heard yet!

This patient has met SCLC. That’s medical shorthand for advanced lung cancer that was possibly incurable from the the start, most likely caused by smoking, which has spread from the lungs throughout the body via the blood stream and deposited in the usual place that lung cancer goes to: the brain. Isn’t medical terminology amazing? 7 letters that tell me all of that!!

When a cancer spreads the medical term is that it metastasises. The cancer clumps that have spread away from the primary, or first discovered/diagnosed cancer are known as metastases, shortened to mets. This patient has brain mets. The cancer has spread from the lungs into the bloodstream and traveled around the body before settling in the brain and growing there. This is now a secondary cancer because it has come from the primary cancer. We can prove this by taking samples of both cancers; they will have the same histology or cell type, and the same structure and growth pattern. Each type of cancer has a typical pattern of where the mets will appear. Patients with lung cancer will be screened for brain mets. Breast cancer patients will be scanned for bone mets and etc.

I sometimes hear or read of people saying that a person has breast cancer and bone cancer and brain cancer, as though they were 3 different types. The odds of that are really absurb; it’s a once in a lifetime patient sort of odds. Much more likely, it’s breast cancer which has spread to the bone and then the brain. That’s nothing to do with the anything, just something that I’d like people to know.

SO getting back to the story! Our patient has advanced, likely to be life-ending lung cancer that has spread throughout the body and has established in the brain. At this point they cannot be cured of their cancer without very extensive surgery to remove the cancerous lung and brain tissue, and severe chemotherapy and radiation therapy…and even then it’s doubtful! And its a very high cost to pay, especially removing part or all of the lung/s and part of the brain!! Brain and lung surgery? And possible transplant to replace them? for no guarantee? It would be a very brave doctor to recommend that course of treament, unless the patient were very young and fit…which is unlikely given this cancer is caused by smoking.

So at this point we offer palliative care, or end-of-life care, or comfort care. Or try to.

Usually we try to get the patient back home with the appropriate supports of doctors visits to the home or at their usual clinic, nursing care in the home if the patient can’t do for themselves, plenty of medications and basically whatever it is that they’d most like to fill their final days or weeks or months with. If they can’t be sent home we at least give them a private room, unlimited family visits, their little dog/cat coming in, vases for flowers, unobtrusive nursing care and medications, comforting doctors rounds, limiting anything not fully essential like blood tests or blood pressure checks, and again, basically whatever they want that is feasible.

Once we had a wedding, in the patient’s garden around the side with the couples children and close family then day leave and permission for one alcoholic beverage. She died 3 days later at 40 something. Everyone cried about the wedding, either at it, or thinking about it, or seeing her come in from home in her wedding dress on oxygen holding her kids hands.

I’ve seen patients is deep distress changing completely when their little dog is brought in. They coo and talk to it, cuddle it, put their face next to it, and just relax so much. It’s such a tear jerking experience! The change in them, that peace, all that matters is they’ve seen their little dog and it’s going to be okay, and all is okay with the patient somehow.

But in this case, that isn’t going to be an option as such. In this unfortunate patient, the cancerous growth of the brain mets has set off a full blown psychosis! The pressure of  the extra growth onto the brain stretching the brain sac, the location of the mets pushing on certain areas of the brain, physical and chemical changes etc can cause different symptoms like confusion, delerium but I’ve never heard of this before. Think hallucinations, delusions, aggression and violence…such that the oncology ward wasn’t able to deal with the patient anymore and they’ve been sent to the psych ward! That’s not the place for comfort care, for a nice big room with flowers and family spending quality time at the end of life. Instead it’ll be sedation, anti-psychotics, possibly restraints, surrounded by other disturbed patients in an environment that’s hardly welcoming.

And that’s how little control we have over the end of our lives.

Medical conditions eventually get us all, one way or another. I think we should recognise that. We will all die of a medical condition, and can I add, or mental health condition. And we don’t have a lot of control over any of it!

Now it’s full psychosis as a result of lung cancer as a result of smoking.

It might be kidney failure and second daily dialysis as a result of diabetes as a result of a fatty diet.

It might be suicide as a result of desperation as a result of depression.

Where is the control?

So wouldn’t it be nice if we thought of them all the same?

I would love to live in a world where no one ever described death by suicide as selfish.

Because if we can call suicide selfish, what on earth would we call the death due to smoking or a bad diet?? We feel very emotional about the unfairness and randomness of cancer, but is that really in line with how we think about suicide? Depression can be very random and is never fair. It distresses us to see patients on dialysis and in the inevitable spiral to death that comes with kidney disease, but isn’t that just exactly how we could describe the progress of an unwell patient with insufficiently treated depression?

I’d prefer there be no blame on anyone.

As a fatty who is struggling to exercise and diet through her medication haze and bipolar up and down blips, am I really going to say I told you so to diabetes, high cholesterol, and all the consequences thereof, stroke, heart attack, high blood pressure, kidney failure to name a few?

As a depressive who has spent 3 years trying, trying, trying through all the low mood, low motivation, low energy, low self esteem, low interest, low care and everything that comes in that huge big black box, I certainly can never blame anyone who just couldn’t take it anymore, and doesn’t know how else to escape but through death.

The smoking one I’m still in debate with myself over. I guess because I’ve never smoked and I’ve never had to quit, I can much more easily see why it’s a bad idea. However, my judgement is reserved for those who didn’t know it was bad when they took up the habit. People who grew up in my era (can I call it an era yet?) know it’s bad, and took it up anywhere. But again, because my mind sees all angles, I realise that there could still be a lot of factors as to why they did take it up: parents who smoked, peer pressure left over from the 90s, depression/anxiety, and a bunch more. Point being, I don’t think you should smoke but I do know it can be incredibly hard to stop, just like the gym is something I should do and find hard to!

My aim for us all: let’s work together to realise that in the end, we quit, we exercise, we try, but that’s not a guarantee, just a higher likelihood of control.

 

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“Totally incapacitated”

Here’s one of the perks of being a health professional.

When the tables are turned and I find myself on the other side of the bench/bed/clipboard, I can understand the language.

When a doctor, nurse or other health professional forgets to translate the Greek/Latin into English I still know what they’re saying.

I know the medical terms. I know the diagnostic criteria. I know the treatment plan. I know the drill.

Because it’s my language, usually.

“Take these tds. Experiencing anhedonia. Query gets elevated. Ruminating. Appropriate. BP1”

I spent years learning all the terminology so that complex medical information can be quickly and easily communicated to other health professionals. And then spent years of practice learning how to translate it back in a simple, un-involved way to patients and non-health professionals.

So now, when I see a doctor it doesn’t matter whether they use the Greek/Latin or English; I can understand.

This has its downsides.

Sometimes doctors use Greek/Latin code to communicate sensitive information amongst themselves that the patient doesn’t necessarily need to know at a point in time. Information that may have a negative impact on the patient. Information that may alarm the patient unnecessarily. Information that may skew the way the patient sees themselves and reports information to the doctor. Or many other reasons.

Patients don’t like this most times. They want to know. They want to be told. They want the translation of doctor-speak.

And so they end up asking for information that is unnecessary; that will later prove to be irrelevant; that scares them for no good cause; that gets them looking for specific signs and symptoms that may not be there and creates a degree of paranoia; that gets them reporting biased information to the doctor instead of giving the full range of  information that the doctor needs to determine a diagnosis or treatment plan.

For example a patient comes to the doctor with a dry cough that has been going on for a couple of months.

In the doctors’s mind the common causes are viral, post-nasal drip after a cold/flu, or chest infection. The less likely causes may include tuberculosis (TB) or lung cancer. But of course no doctor will tell a patient who has just walked in to the surgery that they may have lung cancer or tuberculosis. That would create panic, scare them for no reason and bias the patient to give information that they think is related to lung cancer or TB. It would create a lot of emotion that would take a long time to deal with and is unnecessary.

Instead the doctor runs through a series of questions to rule in or rule out different diagnoses and comes to a conclusion, makes a diagnosis and comes up with a treatment plan. Without causing bias or terrifying the patient by telling them the options that they are ruling in and out. Without giving them unnecessary or irrelevant information. Without telling them information that somehow they think they need to know.

They communicate the diagnosis and treatment plan and send the patient on their way.

(This is an example only and not a comprehensive diagnostic description!)

The unfortunate thing about knowing the language is that I get these sensitive bits of information. I get information that I don’t need, that may end up being irrelevant. I get information that scares me, that changes the way I think about myself and the way I look for symptoms. I get information that is more than I can handle, that weighs me down.

Here’s a translation of the terms above:

“Take these tablets 3 times every day. The patient is suffering from an inability to experience pleasure in, or enjoy, day to day life. There is a possibility that the patient suffers from episodes of mania including high energy, extra happy moods, enhanced appetite, lack of judgement and self control. The patient is experiencing circulating thoughts on the same subject that keep going around and around and prevent other thoughts. The patient is behaving in a reasonable manner and is not demonstrating any unusual symptoms. Bipolar 1 disorder, otherwise known as manic depression where a patient can experience episodes of severe depression and then alternatively experience manic episodes of high energy, excessive behaviour and ultra happy moods.”

So you can see why health professionals are taught Greek/Latin!! It makes communication so much simpler and easier. Saves a lot of talking in critical situations.

But for me, instead of hearing a few blah blah words, I get the whole lot dumped into my brain. Which is a lot of information. Especially about things that aren’t confirmed and are only a “query” or possibility. It changes the way I scan myself and look for symptoms. It changes the way I think about myself. It confirms the negative symptoms. Sometimes it confirms that I’m doing okay. Sometimes it confirms ‘maybes’. Sometimes I just don’t want to know!

A few colleagues have said to me at different times: “so what antidepressant did you choose?”

I guess it’s a tendency of health professionals to semi-diagnose themselves, think out a probably treatment plan and consider the pros and cons before going to another health professional, usually a doctor.

But that’s just not how it has been for me. I got sick. I felt awful. I got desperate.

So desperate that I just wanted to put myself in someone else’s hands, to not have to take care of myself anymore, to give the responsibility over to someone else.

I didn’t want to think about treatments, I didn’t want to know about the decision making process, I didn’t want to have the burden of deciding which antidepressant was most appropriate for me, a 26 year female of child bearing age with irritable bowel syndrome, reflux, previous clotting disorder and high blood pressure while taking an SNRI, venlafaxine, exercise-induced asthma, previous failure of therapy while taking an SSRI, fluoxetine, feeling suicidal despite taking 2 antidepressants for the prior 2 months.

I didn’t want the knowledge. I didn’t want the automatic analysis that I’m trained to give to any clinical scenario. I didn’t want to have to think it all out. I just wanted someone else to figure it all out and fix me.

So my message: think before you ask for knowledge, before you demand a translation from your doctor. Do you want the knowledge? Will you be able to handle it? How will it affect you? Do you really need it?

Or is it better to sit back, trust the doctor, and believe in the treatment that they have tailored specifically for your personal characteristics?

I’m not suggesting blind faith, or unearned trust but my recommendation is to think about what you ask of the doctor. Because they do have to give you the answer, even if it will only harm.

Because some words you can’t un-hear or un-read. Like when a doctor writes an insurance report for your income protection payout and gives it to you unsealed because you understand this stuff. And you read it and the reason he’s written for you not being able to return to work is that you are:

“totally incapacitated”.

That will hit you like a brick! It will make you re-evaluate your progress and current state of sickness/wellness. It will get you wondering if you are actually worse than you thought. It will get you wondering if you are useless.

It will start a chain of self-doubt and pondering. Suddenly you’ll think “can I” instead of “I can” or “I will”.

Am I actually a capable person who lives and breathes and cooks and cleans and drives and makes decisions and has responsibility?

Or is that a delusion? Am I actually not doing anything at all?

KNOWLEDGE IS POWER.

But can you manage the power or will it overwhelm you?

BE CAREFUL WHAT YOU WISH FOR.

Are you wanting to know details that can have no advantage or benefit to you, and are best left well alone to someone else’s responsibility?

Take it from me, if you will: you may save yourself a load of stress and anxiety, sleepless nights, fretting and worrying by leaving be details that will only weigh you down.

Let alone and be free.

wooden boat on an Amazon tributary at sunset

Peaceful serenity at sunset in the Amazon Rainforest near Puerto Maldonado, Peru