Unfamiliar faces

A few years ago, I got an unexpected phone call from my brother. His girlfriend was unwell and they wanted to understand what all of the tests, appointments and opinions really meant. My brother and his girlfriend are both exceptionally smart individuals but I was shocked to find my brother stammering through the imaging report, struggling to pronounce the words in front of him. It was a reminder, and a much needed one, that we become so disconnected from the level of understanding of the general community. It seems that every time I visit my parents, my mum has a new drug from her specialist and questions on why she's taking it. And when my dad went in for a simple surgery, I got a disappointed text from my mother asking why I didn't call first. It hadn't crossed my mind; why would I be worried about a routine procedure?

These interactions with my own family make me wonder how much I am really missing with my patients. Do they understand anything I tell them, or are they just smiling and politely nodding their heads? When they sign on the dotted line to consent to surgery, do they really understand what they're in for? This journey through our healthcare system is extraordinarily complex and can be difficult to navigate even as a health professional. So many of my colleagues have commented on how powerless, isolated and confused they feel when it is themselves or a family member in hospital, and that's even with the privilege of being given the "doctor treatment" by the treating team. How difficult must it be then when you've had only basic health education at school and suddenly find yourself in the Emergency Room being admitted to hospital for something that you'd put off because it "might just go away."

Working in Emergency, we are often bewildered by the things that people either come in with, or choose not to come in with. While there are the handful of patients who come in with new concerning features that can't wait for a general practice review, the majority of presentations seem to sit either side of this. There are the multitude of what we call the "worried well" - people with common colds or mild gastroenteritis who come in fearing something terrible may happen. As much as we may sigh to see them (in part because all those viral illnesses floating around mean we'll probably be snuffling in three days' time too), there's a part of me that feels comforted that these people will turn up if something serious ever happens. On the other end of the spectrum, there are the folk who come in three days after feeling like there was an elephant on their chest, with a heavy pressure and pain that went into their left arm and up to their jaw. They've come in because they suddenly feel tired all the time and get puffed going up the stairs. There's no joy in the diagnosis here; it's horrible telling someone that they had a heart attack three days ago, and three days ago we maybe could have helped but now all we can do is try not to let it get worse.

I understand why people don't want to come in to hospital. I wouldn't want to be a patient either. It's overwhelming, lonely and disempowering for many. It's confusing. It's hard to remember what day it is. Lots of things happen around you and sometimes it's hard to remember or understand why. You meet so many unfamiliar faces.

Imagine this -

It's a Saturday evening and you've been feeling unwell for a few days. You've been off your food, but still managing to nibble some crackers and sip on water. You went to your local doctor yesterday because you didn't feel up to going to work and wanted a medical certificate for your boss. The GP wasn't too concerned at the time but agreed a few days in bed would be beneficial. Things have changed, though. The pain is now searing and you can barely stand up without doubling over. Movement is unimaginably painful. And you feel so nauseated that any food or drink you try to consume seems to come straight back up. Your doctor told you if this happened that you should go to hospital, and hesitant though you may be, your loved one at home insists on carting you up there because you look so off-colour.

On arrival, you talk to the gentleman at the desk who asks you a number of questions and makes you sit down in an exceedingly uncomfortable plastic chair to fill out some forms. You hope that you won't be there long but it ends up being a solid two hours of discomfort without any pain relief. You see the triage nurse, who asks you all about your symptoms, pokes and prods you for blood pressure and temperature, apologises for the delay but it's very busy tonight, and sends you back to the waiting room. The smells and bustle of the waiting room make you feel queasy and you've only got a plastic bag to vomit into should the need arise. Eventually, you're taken around to a bed by another nurse, where you get poked and prodded again, and you tell him about your symptoms again. Some time later, a doctor turns up and she asks you similar questions, and some extra ones, and subjects you to some tortuous examination to elicit what may be wrong. She tell you some other doctors will come see you, and that they're ordering some tests. You find yourself prodded again, this time for blood tests and for a drip. Cold fluid starts running through your veins, leaving you with a salty taste at the back of your throat that you can't wash away because, all of the sudden, you're not allowed to eat or drink even if you could tolerate the thought of it. Another person comes along, carting you across to the radiology department for some imaging tests, where you meet some more people who ask you to wiggle around to be in a perfect position despite the pain it causes, and ask you some more questions, and rattle off some words you don't really understand. Then it's back to your bed in the Emergency department where you wait what seems like eternity to see these other doctors, who ask you the same questions as everyone else, poke your belly (much to your distaste, nauseating you further) and disappear again to get a consent form for surgery. They tell you all about how they'll put cuts here and here and there, take out this little organ and sew you back up. There are some risks, they say, but ultimately you need this procedure or the alternative is very bad. Not really understanding, but knowing there's not much else on the table, you groggily sign the form, mind overwhelmed by the narcotics you've been given to quell the pain.

You fall asleep for a little while, exhausted by the events of the last few days and calmed by the effects of the analgesia. Your dreams are strange, filled with the beeping of the many unfamiliar machines in the department. When you wake up, you're somewhere else, and a different nurse is peering over you, trying to explain that you need to be poked and prodded again for your four-hourly observations. She also wants to know if you would like more pain relief, which you probably wouldn't have needed but now that you've been disturbed that searing pain is creeping up on you again. If feels like you've hardly drifted off to sleep again when some new doctors wake you up again, explaining they are on the morning ward round. They poke your belly for the umpteenth time, making you want to vomit up that horrible salty taste. They tell you the wait for the operating room is long and there's no guarantee you'll get done today. And then they're off again.

You wake up again in a tiny room with a sign on the wall that says "anaesthetic bay." Someone is pulling at the band on your wrist that states in no uncertain terms who you are, how old you've become and where you reside. Your band is red because you have a terrible allergy to peanuts, which doesn't seem all that important in a hospital. They ask you what you're allergic to and what happens if you're exposed to the allergen. They ask you your name and date of birth while staring intently at that little band, seemingly only half aware that there is a human attached to it. Because you were half asleep when this all happened, you're not really sure who this person is. They seem important. Everyone does in this place. You get asked again why you're here and what procedure you're getting, and told that you might not remember all of this because of the medications they will use to keep you asleep. The next moment you can remember, you're in a different part of the hospital again, with some new cuts across your belly and a whole new set of nurses. There are people hurrying around someone else who looks wildly unwell. There's beeping and shouting, and though you'd love some water, it's all too hard. Eventually, after the seemingly obligatory poking and prodding, someone takes you back up to the ward where your family is sitting nervously, stressed by how long it's taken you to return.

Over the next few days, the flurry of names and roles wash over you. The nurses, the cleaning staff, the kindly folk who ask you what you would like to eat today, the people who actually bring you the food, the people who take it away, the doctors who appear only once a day unless something is going wrong, always harried and with their pockets constantly beeping with calls to some other job. Eventually, feeling only half of the human you were a week ago, somebody tells you that you're safe to go home and hands you an envelope for your local doctor. They tell you you're meant to be following up in a week and to book an appointment for clinic. Before you know it, you're being shipped down to a so-called transit lounge to free up the bed for some other sick soul. You'll wait there, sore and tired, until someone can take you home.

And so goes the short journey of a patient in hospital. A place filled with beeping machines, more staff interactions in a day than you have fingers and toes, plenty of pain and lots of confusion. If you're a regular, you might get used to the long days that are only punctuated by the early morning medical rounds, the intermittent nursing calls, the food trolley and the obligatory physiotherapy assessment. You might get used to explaining yourself again and again. You might get exhausted of saying the same things over and over, and request that people just "read your file," while staff want to hear your version of events rather than read through pages of retrospectively unhelpful notes.

As staff in the hospital, we can forget how little patients may understand about their condition. We can forget that the explanation might need to happen a few times before it sinks in. We get frustrated that we've explained the same thing to the same patient three times, yet forget that that patient may have been unwell, half asleep or confused by the initial attempts. Our explanations can be rushed, punctuated by bleeps of our pagers and the ring of our phones. And, invariably, we feel guilty for being unable to explain the unexplainable. Why did this patient get ill? Why now? Why this? When will I feel normal again? Will I ever feel normal again? These things are not certainties. Nothing about this process is for sure. We can't tell you how long you'll be in hospital. None of us have a crystal ball. We can't tell you if the surgery will definitely fix your problems, or if you will be back for something else in a short while. We can't wave a magic wand to make it all better, as much as we would love to do so. As staff, I think we all feel somewhat guilty that we can't fix everything or come up with answers to all of these questions.

As clinicians, we can do better. We should make time to listen to patient's concerns. These are often wildly different to what we consider the major issue. Patients care frequently about how long they will be off work, given the necessity of paying the bills. Patients care how long they'll be away from pilates or the swimming pool, or how long it will be until they can pick up their three-year old from the ground to the hip. They want to know if their illness will prevent them from visiting their newborn grandchild or their friend who has leukaemia. They might not care whether their internal sutures are dissolvable or not, but if they're not we might need to mention that there could be a little lump under their skin in the long term. Rather than reeling off a spiel about post-operative expectations, we need to slow down and find time for the individual patient.

In the overwhelming hospital environment, it's our job to be a comfort amongst all that is unfamiliar. It's our job to listen. Fundamentally, it's our job to make sure patients feel that they will be safe if they turn up to our front door.

Post script:
Since writing this piece, I've received feedback from friends and family who have been patients. Some of these people are also clinicians in a variety of fields and specialties. Even for them, with a more detailed understanding of healthcare, these experiences can be tough.

Some of the feedback I received can be summarised as follows:

  • Respect. Respect space. Respect time. Respect all the normal human things that you would expect yourself.
  • Treat patients like the human beings that they are - real people with real emotional needs, who likely would appreciate knowing why they are receiving care and what that means for them in the future
  • Respect the need for rest
  • Explain what you're doing, the steps involved in care and possible future scenarios
  • Remember that patients are people with jobs and lives and responsibilities outside of their medical condition. If you don't remember this, they may prioritise their "other" things more than the care you think they need
  • Give links/pamphlets so that patients can re-visit their diagnosis at a later time, because likely half of what you say will be missed. Nobody can remember everything.
  • Give space for questions. These may not be the things you expect to hear.
  • If you're in rooms and happen to be running late for consults, it may be helpful to have a system to notify patients so that they can fill in their time some other way. This is particularly important for patients who are taking time out from work, or may have an appointment prior to picking the kids up from school.
  • Ask patients how much they want to know. Some people don't want to know very much at all. Others will want to read medical journals about their condition.
hospital corridor

Comments

Lance Abel said…
Here’s what I usually find when I leave a medical office.
1. From a recent experience with a gastroenterologist. Did he know it was going to take me a week to get the prescription, because it takes a day for me to go in to the chemists, because this is not stocked by 99% of chemists, because they’re not open over Christmas and because it’ll take me another day to get it? Is it possible the system could somehow have allowed him to give me a small dose even at higher cost so that my condition can stabilise rather than get worse until I get the meds? It leaves me guessing: did he just not care, or did he just think this wasn’t important in the larger scheme of things/given what he knows about the issue? I still wonder whether there is a better solution here as most gastro people see people with similar conditions and similar treatments and then everyone goes through the whole wait for chemist thing. It seems really sub-optimal. Keen for your thoughts on this.
2. Not enough information about next steps. e.g. ok so now I’m on this treatment, what are the various scenarios going forward? How many days must I have symptoms for next time before starting taking meds again? How long must I not notice improvement for before making an appointment? If I’ve made an appointment and then I see improvement, for how long must I see absence of symptoms before cancelling appointment? It gets frustrating when you change your schedule and then find out you didn’t really need an appointment. I mean if it were easier to contact the guy to ask a quick question, that would be helpful, otherwise maybe a flow chart was necessary!
3. Not enough information about the general condition. How many people have the condition I have at the severity I have it (like in terms of percentile)? If severity increases, what is done at worse levels and how effective are these treatments? Are the causes known? Are “cures” close? I understand the need not to get ahead of ourselves and to create unnecessary worry, but this feels part of the overall picture of “how likely is this to be an issue for me going forward”. I also don’t expect doctor’s time to go in to personally explaining everything, but if doctors are concerned about patients doing too much reading online, they could also point patients to particular sources they think are reliable or worthy for further education.
4. Are there non-proven things that the doctor would like to personally recommend or which make logical sense to them that I should do to improve the situation?
5. Why was there still a 1.5 hour wait when I arrived? Couldn’t his secretary have told me this before? Was the delay really in the patient before me? What’s the relative benefit of this guy’s knowledge of me versus the 1 month wait time every time? Does this person really care about me? The other issue with the general long wait time is you finally get to see the specialist, then they say that unfortunately treatment is generally only effective if commenced within a few months of the first symptom (in the case of a vitilago patch I had, for example). But by then you’re already 8 weeks down the line and so have less chance.
6. Why does prescription only repeat 1x, are they really worried about me abusing this medication or do they just benefit from the repeat consults?

In general, I’ve found medically trained staff giving me too little information. “Put this cream on twice a day”. How much? “Just a little bit”? Can you demonstrate or quantify how much “just a little bit” is? Must my skin be completely dry before/after? Does it matter if its spaced out by <6 hours? What to do, if anything, if I miss a dose - should I be doubling up or is that harmful?...
Lance Abel said…
...over char limit.

My further questioning might reflect my generally anxious nature and it might be about things that don’t matter, but patients have very little prior knowledge about what matters. So in general it might help if doctors tease out how much information the patient wants. If they’re not sure if the patient understands what they need to, ask them a question to test their understanding. Patients like to leave having learnt something, especially knowing they understand their condition better and with less questions swirling in their mind later

Ironically in the situation you describe in the blog where somebody is having lots of stuff done to them in a hospital stay, it might be information overload and that in conjunction with the experience being unfamiliar and them feeling unwell may be why they end up remembering too little or the wrong thing, so it’d probably be helpful if the patient is actually given and explained information afterwards. Returning to the point about a link or information being provided afterwards.

Anyways its great that you're obviously considering what it's like for the patient with a great deal of empathy.

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