She didn’t want to bother anyone

Last week a patient on my ward was discharged home and I went up to the ward to go through the medicines with her. She was going back to the care of her dedicated daughter who was there to hear all about the medications changes. The patient, despite being in her late 80s, was still sharp and with it and until only a year earlier had looked after all her medications herself, which is very impressive.

I admire patient’s who take the initiative and really get to know their medications and take charge of their own health. It just adds another layer of checking to the medication system which can be vital.

So I sat down with the daughter to educate her about the current medication regimen, with the patient listening in and nodding.

And although I was there to teach, I learnt a whole lot!!

First medication. The dose of prazosin has been reduced to once a day rather than twice a day as it was when she came into hospital, I say. Why has it been reduced when she’s had high blood pressure while she’s been in here? she asked. Well, I was taking over from another pharmacist and didn’t know the answer. Did she know what the blood pressure had been, had she seen the chart? I ask, stalling. No but she just knew that it had been. So I get the obs chart which shows an occasional reading of high blood pressure, maybe one in 5 or 6 so I explain that treating those one off higher blood pressure readings to bring them down to normal would put her mother at high risk of low blood pressure the majority of the time, which explains why they dropped the dose. But the kidney specialist put her on that dose, she says. I understand that, I say, but blood pressure changes and so the dose has to be changed to adapt; I’m more than happy for her specialist or GP to change the dose at the next appointment if that’s appropriate. Oh well, it was probably just high while she was in hospital, they’ve treated her horribly, I’m told!

This is always a big disappointment to hear, because I’ve gotten to know a lot of the nurses on this ward and I’ve seen how they care for their patients, even the difficult and hard patients. This patient was easy and lovely so I find this hard to swallow. I’m not saying that awful patients are treated worse, but I’m saying if the nurses can do their best for stressful patients, I’m sure they would have given outstanding care to this sweetie.

Really? I ask, surprised. Oh yes, she nods, and her mother, the patient, nods. We’ve had the most terrible time while she’s been in hospital! Well I’m very sorry to hear that, I respond. Oh it’s not your fault dear, I shouldn’t have mentioned it.

Second medication. This is the anti-fungal cream that we’ve been applying three times a day to your mother’s groin (sorry people, TMI) to treat the rash, I start. Oh yes, do you know that those nurses left her in a wet nappy overnight, for 8 hours?? How terrible is that, she asks me, starting to wind up the tone and intensity? Really? I ask again, because I just find it very hard to believe. The patient nods, yes that’s what happened. Well I’m very sorry about that, I say, that shouldn’t have happened. I wonder out loud to the patient, did you tell the nurse about it? No, she shakes her head. The daughter chimes in, she doesn’t like to bother anyone.

For serious???

You are complaining, and I find out later that there’s an official complaint, or rather several official complaints, about wrongdoing by the nurses but you just sit there and let it all happen when you have a mouth that you are fully capable of using, and a hand to press the buzzer, and surely a desire to not sit in urine for 8 hours just for the sake of not using your voice or your hand!! I find that ludicrous, and really, unacceptable. This isn’t about victim blaming by the way, the incident happened no doubt about it, but it’s about why it shouldn’t have happened and it could have been prevented.

We have patients that can’t speak, or can’t put their thoughts into coherent speech, or can only make sounds, or who take what feels like forever to get the words out. We have patients who are immobile, paralysed, unable to move their limbs, or unable to know what to do to get help. She ain’t one of them!

I don’t think anyone likes to make a fuss, or a scene, or a big deal, or call attention to themselves, complain or whine. Maybe the odd person. But this isn’t about that. This is about bringing attention to an issue that needs to be fixed for the sake of your health. You aren’t putting someone out, or bothering them, the nurses are there to help; that’s their job! If they have something more pressing to do, they’ll let you know and come when they can. But the 8 hours overnight that she stayed in that wet nappy are the quietest hours in the hospital. Often nurses don’t have much to do other than be on call for patients…so call them!

Again, not victim blaming but a patient has to take responsibility for their care. If the nurse doesn’t know the nappy is wet, she won’t come and change it for a dry one. You aren’t a baby, your parent doesn’t come along and stick a hand down your pants into your nappy to check if its wet; it’s not someone else’s job to come by every 20 minutes to ask if you need a change. You’re an adult. You tell someone when you need something, right? No, apparently not! And this was only the start of it…

Medication number three. Trying to move along and get past that one. Codeine has been stopped while your mother has been in hospital, I start. Yes I know, that’s why she’s been in pain the whole time she’s been in hospital, she counters. Oh my, here we are again! Who leaves their mother in pain for 8 weeks instead of saying something? Who doesn’t speak up for themselves when they’re in pain? Oh I didn’t want to make a fuss, says the patient. Give me strength!! You either weren’t and aren’t in pain because if you actually were and are you would be begging for help, or you are competing in some martyr awards that I haven’t heard of! You don’t sit there in pain and not say anything. Do you? Am I on the right train here? Well, codeine is not the best pain killer, I try to continue, and we weren’t aware of any pain. She certainly hasn’t requested any pain relief. And I think, although nurses, doctors and allied health staff may be brilliant, we still can’t read minds! Surely anyone can see that making an official complaint about a patient being denied pain relief when no one knew that the patient was in pain isn’t quite logical!! And don’t tell me that she was never asked if she was in pain. It’s a rehab and geriatric progress ward, every pain is continually asked about pain, about their bowels, and obs are taken regularly. It all seems so unnecessary!

Well, what a way to start the day! I did get through the rest of the meds eventually, but I was ready to get out of there!

Didn’t want to make a fuss, didn’t want to bother anyone, didn’t want to get in the way, didn’t want to be a burden. I get that. Sometimes it’s hard to speak up when you need something. But you can’t have both sides, not speaking up AND making official complaints against care givers. I believe in the complaints process and wouldn’t discourage anyone from making a valid complaint. But this feels like making a scene over something that could have been nipped in the bud at the start. It feel like an attack on the nurses who try their very best, and who couldn’t have prevented any of it without the patient doing their part.

So maybe its something more people need to know about – for your own health’s sake, you need to speak up. Don’t wait til discharge to complain about problems when you never did your side of the job in speaking to your nurse during your hospital stay. It’s a two way street, nurses aren’t psychic so you need to tell them what’s on your mind. Is it too much to ask?

So tell me…?

Something that I’ve found out along this journey with me, my head and I is that questions are really important.

It was that question that has become an advocate for helping others with mental health concerns that first triggered my understanding of the need for questions; R U OK?

I’ve always been interested in mental health and I saw this group pushing people to understand and use the question R U Ok? to start talking to others about what’s going on, what’s wrong, what’s troubling you, what’re your concerns? I thought it was a great idea and I bookmarked it in my head to use someday if I saw someone having a hard time.

I wasn’t sure that it would be effective but I planned to give it a go anyway; nothing ventured, nothing gained, right?

But then, before I had a chance to use it to help another person, someone asked me, and I burst into tears!! Just like that! That is how powerful the question is and how right on target it is to really hit the spot when someone is down, anxious, fearful, despairing etc.

I didn’t think it would work. But I walked into a doctor’s room to get some routine results, she asked ‘are you okay?’ and it turns out I wasn’t, to a severe degree which I had not even realised up until that moment.

When she said, ‘how are you?’, as I walked in the door I said fine. That question is just too automatic and we are too programmed into a standard response that doesn’t really give an answer. We know when we ask it that it’s more for form than for really enquiring into someone’s health. It has become a greeting more than a query. Not to say that it can’t be used as a question; some people can inject that something extra that shows that they genuinely are enquiring about your health, but usually that’s not the case.

But there is something unique, direct and unusual about the question ‘are you okay?’ that hits a nerve, that registers with a person as an actual question and that demonstrates some extra kind of care and interest on behalf of the asker.

Questions are so important in mental health.

We can’t lay open a wound, or show an obvious dislocation, or contusion, or register a positive blood culture, or low blood level as evidence of our condition.

We may not look ill, or sick, or injured to other people.

All the evidence of our ailment is locked inside our heads.

It is literally all in our minds, but not in the way that that saying is usually used, to suggest that it’s a figment of our imagination!

There is nothing imagined or exaggerated or fictitious about any mental illness.

However there is a level of difficulty for anyone treating a mental illness, be it doctors, nurses, psychiatrists, psycholgists, counsellors or any other health professionals.

To diagnose a mental illness, as with any other condition, a set of diagnostic criteria must be met. But none of those criteria are obvious when a patient walks in the door.

The diagnoser (doctor or psychiatrist) must be able to draw out the information that they need to make a diagnosis by asking questions. They need to ask a lot of questions. Questions designed to gather information, to confirm suspicions, to determine signs and symptoms of the condition.

They have to be very skilled in asking questions AND in listening to the answers for clues about what is going on with the patient.

It takes time! Sometimes a lot of time. Sometimes questions are asked over and over. There is a purpose to that; it is to gather the right information so that the right diagnosis is made and the right treatment given. It might seem repetitive but every question fills a useful part of the overall picture. It’s not a sign of incompetence on the part of the person asking the questions; its a part of their professional skill.

Patients most often don’t know what is going on with them. I’m a health professional with a clinical understanding of mental illness but I still didn’t recognise mental illness in myself. I just thought I was stressed at work. The fact that I was constantly obsessing over work all day and night, that I couldn’t sleep, that I was being clingy and petty and being a huge strain on my husband with my concerns and fears and anxiety didn’t occur to me to be an excessive reaction. So I can’t even imagine how patients with no prior knowledge of mental illness feel when they start to suffer from symptoms.

They might be scared, afraid, stressed, anxious, overwhelmed, confused, in denial or fearful of what the diagnosis will mean and what treatment will be prescribed. So the doctor also has to tread carefully around the person’s soft or sore spots but still trod and poke enough to get what they need to do their job.

In any emotional state a person has more difficulty remembering and recalling, trouble giving an accurate history, limited ability in listening and responding, and struggles with taking in information. This is one of the reasons why questions need to be repeated; to be sure that the right answer has been given. It’s also why seeing multiple doctors on different occasions can be useful in building a clearer picture of what is going on.

Often a patient may not be diagnosed immediately, because of these factors. It may be considered in the patient’s best interests to allow them time to go away and calm down, to give more thought to the history of symptoms that they have experienced, and then to bring them back and ask further questions. Of course it isn’t safe for all patients to be sent away; some need to be kept for their own safety, some need to have treatment started immediately. For those who are sent home to return late, maybe the same questions will be asked all over again, and although it seems tedious to the patient, it is all for the purpose of gathering as much information as possible so that the best outcome can be achieved for every patient.

So, questions.

Tell me what’s been going on?

How have you been feeling?

When did this start?

Who have you already seen about this?

What treatments have you tried?

Has anyone in your family experienced any mental illness?

How long have these symptoms been going on for?

How severe are your symptoms?

What symptom is the most difficult for you?

What has brought you here today?

How are you today?

Compared to then, how are you now?

What do you think has triggered these symptoms?

What has happened that might have caused this?

What do you know about your condition?

What do you know about the treatment for this condition?

What’s the worst symptom that you are experiencing?

How are you coping?

Are you experiencing any side effects?

Give me a run down on how the last week has been for you?

How often do you shower?

How often have you been getting out of the house?

Are you finding enjoyment in life?

How has your motivation been?

What have you been getting up to?

Have you been hearing or seeing things that don’t exist?

Has anyone been speaking to you through other objects?

Are you suicidal?

Have you had thoughts of harming yourself or others?

Do you have a plan to harm yourself?

Have you had suicidal thoughts?

Have you had thoughts that are frightening to you?

How has your sleep been?

Tell me what you are afraid of?

Do you ever have periods of great energy when you can achieve a lot? Or when you don’t need sleep?

When are you not anxious? Are there any places where you feel comfortable?

What things make you anxious? What things trigger a panic attack?

There sure are a lot of questions that can be asked!! And this is probably the tip of the iceberg really, these are just the questions that I can remember from the health professionals that I saw. I’m sure there are many others for other mental health disorders.

And yet, the most important question is whichever one you ask to the person that you see struggling. It really doesn’t matter what it is. It can be r u ok?, how ya doing?, what’s up with you?, how are things?, how have you been going lately?.

As long as you take the courageous step of asking and listening, you will be doing the right thing. Go you!!