On death and dying,

Oftentimes people are dying while we live about them, amongst them, in front of them. Oftentimes people are almost dead when I meet them, thus the meeting is quite one sided. Oftentimes people die on the ward – families request this more often than you would think. I have not yet seen the exact moment when this happens, nor do I really believe that death happens in any one moment; I take it to be more like a process, a steady progression in gradual increments towards the place where change ceases.

Every morning that I work the ward I have a stroke list, of all the patients currently on the ward, which I use to keep track of who needs testing and who to leave alone, for a multitude of reasons. Some health related; it’s bad practice to test someone who is medically unfit, as their cognition is unlikely to be at a post-stroke baseline if their body unwell. Some behaviour related; understandably, people become disoriented, confused, agitated, aggressive even, when living on a ward, and in these situations it is also bad practice to attempt testing. Then some are deemed ‘inappropriate’ because the patient is categorised as End Of Life. Is the official reason because we are respecting their last days living or is it an acknowledgement that investigation will be fruitless no matter what? I have never asked.

Tacked on to that is sometimes ‘Last Days of Life’, in which all medical efforts are palliative and geared towards promoting comfort, rather than on improving health. It all makes sense and it is kind and it is right, but it still strikes me, strikes me and moves me and is still.

When death is far away, as it usually always is, it can become magical, unreachable, inconceivable; it can be poetic it can be beautiful even – it can be a brutal and black full stop and it can be a golden question mark and it can be a long night and it can be a final and free morning.

When death is an old and tired human tucked away in a side room staring into the walls – it loses all external qualities. Death suddenly just is. Just a part of life on the ward; make the sure paperwork is done, make sure the family is informed, make sure no one bothers this dying human while they are busy making death.

It is strange how we laugh about it – the amount of jokes that doctors and healthcare professionals of all walks of life make about death and the dying first startled and somewhat disgruntled me; I suppose my warm sensibilities lend me to outrage and disgust in the face of mocking the dead and the almost dead, but I feel that I am coming to understand the drives behind it, and that I have shed such naivety. Those who confront, walk with, talk with death on a daily basis have every right (to my mind) to laugh at it, to make jokes at the expense of those in the last days of their life. Surely (surely!) it is the only thing we all have in common – the destination that we are all propelled towards, the place that we will all one day know.

If we didn’t laugh, just what would we do? If we didn’t take it in stride and walk with it, just where would that leave us – and where would that leave it? Would we be rendered unable to communicate about the end and thus to appreciate the middle – would it retain and expand upon its mysteries, would it become obscured under a shroud of untouchable, unspeakable, unknowable?

I no longer feel that ‘if we didn’t laugh we would cry’ – it’s not a case of cloaking pain with humour. Witnessing death doesn’t always hurt, it isn’t inherently sad, it isn’t intrinsically painful. It’s a case of acknowledging it, and integrating it with life: if we are laughing about it, it is real; if we are laughing about the same thing then you see what I see, you know what I know; if we are laughing about it, then it is okay to laugh, it is okay to feel; if we are laughing about it, we are definitely alive.

I have no conclusion, and I hope you’ll understand my present disinterest in favouring, elevating or attributing significance to conclusions. I have been writing – now I will stop. And that is okay.

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‘Nothing more to be done,’

I was helping out at a clinic a couple of weeks ago, and I ended up observing a consultation with a lady diagnosed with a ‘functional cognitive disorder’ – this basically means that there is no structural, neurodegenerative, toxic or metabolic cause, and that the problems experienced can be resolved through psychological therapies.

‘Functional’ – seems like such a strange way to describe it.

I’d come across this in my work and personal research before, but this lady struck me. The consultant left me to do testing and gave me far too much time with her – this experience of being alone with a distressed patient, completely out of my depth and not knowing what to say is still confusing and stressful, but the shock of it has worn off now and on this occasion I felt able to (attempt to) ‘do psychology’ with her.

This experience has brought up a lot of questions about the validity, necessity and usefulness of a ‘functional’ diagnosis. This lady was torn up; she told me that she was falling apart, that every day was a struggle, that she ‘just wanted answers’ (!!), that she couldn’t do most of the things that she used to be able to do, that she was afraid for her family, that she needed help, that she didn’t know what was happening to her and that she needed some guidance. I could only provide little comfort and vague reassurance – my thinking at the time was that if the consultants couldn’t diagnose her anything more specific than ‘functional’, then there’s no way that I could have done better, although in hindsight maybe I should have tried – and I acknowledged that I was of no help to her. I quickly learned that patients will always feel when you are being honest with them, even if they don’t declaratively know, and I judged that in this situation it was best to not omit that information.

I was useless to her – all three consultants in the clinic were useless to her, her ‘diagnosis’ is useless to her, her ‘treatment’ is non-existent (discharged from neuropsych, refer to health psychology if patient wishes, read these online resources). I’ve just written this lady up in the clinic database, and find myself uneasy. This patient is suffering, she is lost, she needs, and we have discharged her! Without giving her answers, without offering her coping strategies, without investigating further. I’m sure that I don’t know the full picture and that on paper we ‘did all that we could’, but it doesn’t feel right. It isn’t okay.

I’ve come to understand that a skill you must develop when working in a health or care profession is knowing your limits – knowing what you can and can’t do, knowing how much help you can realistically give, knowing your academic and professional boundaries, knowing your limits. Being able to say ‘no’, being able to say ‘I don’t know’, being able to say ‘I can’t help with this’, ‘this is beyond me’. But that doesn’t make it okay. This lady is still suffering, and we still call ourselves ‘professionals’. I’m sure that on paper that is not my problem.

Debrief

A concern that’s come up multiple times for myself and the other placement student working with me is the lack of training and supervision we have received in terms of handling the emotional aspects of our jobs.

Due to having received no training, my immediate (and unconscious) reaction was to assume that no training is needed. In hindsight this is clearly flawed, but this has been my stance. I figured that I am expected to deal with the emotional aspects of my work silently and competently, by myself, and that as a result it should not impact me.

My colleague is of a different opinion; she thinks that the things we have witnessed, such as awake craniotomy, a cardiac arrest on the ward, people expressing confusion fueled aggression deep in the throes of dementia, and the general states of emotional and physical disarray displayed in ward and clinic settings – she thinks that it’s ridiculous that we have never been formally taught how to process such things. After some consideration, I do too – but I also understand that my emotional wellbeing is not a priority to the hospital, and that if I want to pursue a career in psychology (which I dearly do), then this is something I need to learn to take in my stride.

We received some formal training on debriefing purely by chance – we attended a neuropsych masters training day, in which the psychologist took the students through some debriefing procedures and explained why they’re important. One that particularly stood out to me is as follows; at the end of the day, you take a physical folder, and you visualize putting all of the patients you have seen that day’s files into the folder; you shut the folder, leave it on your desk, and exit work. You do this at the end of your day, and you leave work with all of the thoughts safe in the file, rather than in your head. He stressed the importance of not taking your work home, and explained how he does not think about any of his patients outside of work, and actually forgets who they are unless he is in ‘work mode’.

I currently have mixed feelings about this approach. I can absolutely see the merit in it – leaving my work at work, not thinking work thoughts in my personal life, not dwelling on difficult or challenging patients outside of work time. However, I have also found great value on reflecting on my patients, and as there is no time to reflect on them within work, these reflections happen in my personal life rather than my work life. I have found it useful to go over my interactions with patients; what I could have done better, how I could have presented myself in a better way, how I could have explained something better, how I could have been more empathetic. I have also found it incredibly valuable to reflect on some of the emotions that work throws up – particularly in difficult and distressing cases. Why did a patients psychotic episode make me feel anxious? Why did a dementia patient quite far removed from reality make me feel nervous? Why does brain surgery make me cry? I have found that mulling over such questions allows me to access a deeper understanding of myself in relation to my work, and allows me to be more mindful of similar situations as and when they occur than if I hadn’t given them consideration.

I think that it is possibly because I am still so new to this work that personal reflection is currently so valuable to me – I think that if I had been leaving my work at work all the time, I wouldn’t have developed my understanding as much as I have, and as a result, I would be working at a lower standard. I think that when I am trained and qualified and I have multiple patients under my direct care as day to day work, then leaving my work at work will become valuable and perhaps necessary for me. But as it stands, I am currently deriving more knowledge and understanding from taking my work home and examining it then I would if I were to leave it where I found it. As a student psychologist, I am still extremely grateful to have been given the opportunity to practice psychology without a degree, and it is in my interests to get as much out of this experience as possible. There have been times when work has interfered with my personal life, but this has never bothered me or made me wish it were different; I am doing this because I want to learn, I want to understand, I want to be better.

I feel that this links in with the dichotomy so often observed in care professions; the students are overflowing with motivation, they care so very much about their patients, while the consultants care little – the reason being that they have become jaded, they have seen so many patients that they have learned to detach their emotion from their work, and they do not go further than they need to.

I think that training in debriefing and the cultivation of an ability to leave work at work are both valuable skills to learn, and probably necessary for qualified psychologists to accurately and safely do their jobs. But I also hold on to the idea that reflecting on patients in your personal life is valuable – I have learned a lot from patients, and the things they have taught me are not just confined to work; they permeate all areas of life, and can be integrated into my thinking about life in general, not just life as a psychologist. I think that to go to either extreme; not caring about patients at all while outside of work, caring so much that they impact your personal life; is ill advised, and that (as with everything) the best thing to do is to find a balance between the two.

Do No Harm

Since working as an assistant psychologist, I have consistently come to blows between qualitative and quantative explanations and arguments – I strongly believe that human thought and behaviour cannot be explained solely from the perspective of biology, that human experience cannot truly be quantified into characteristically distinct categories, and that the biopsychosocial model should utterly supersede the biomedical model in terms of explaining cognitive, mental and social deficits. However, I’m also becoming increasingly accepting of and understanding of the necessity of the rigorously defined and detached clinical language used to prescribe and describe such issues. I’m beginning to understand why a purely accademic, theoretical or a purely medical perspective needs distance from the humans it’s describing in order to work. I also know that this distance is conducive to further separation between clinician and patient, and that it can easily foster mistrust, frustration and resentment in the patient.

While I’m struggling to reconcile these into one unified set of values, practically I have separated these approaches completely. In the office or writing anything up, I adopt a clipped, detached tone, and my goal is to describe – identify useful information and communicate it effectively. With any patient, I am present, and my goal is to facilitate; to guide, to help, to assist, to empathise, to listen, to hear. And never the twain shall meet!

Seeing as I hold two conflicting ideals and have not resolved the arising conflicts between each, my behaviour must be in direct conflict between my self. It’s not cognitive dissonance if I’m aware of it, but it’s impossible for me to act in a way that’s concurrent with what I believe when I’m currently trying to make binary points into a circle (I’m pretty sure if I were to try and force them to meet in the middle they would explode).

Someone brought up the idea that to practice psychology one must be without conflict themselves in order to clearly percieve the jagged edges in others. We all agreed this as silly. The idea that one must ‘have themselves together’ in order to piece anyone else together is inherently flawed, because everyone is always in a state of flux, and change, and shifting perspectives. The best we can do is treat our patients as we aspire to treat ourselves – with kindness, patience, empathy, and warmth.

WIP (mdt)

“I’ll just draw the curtains,”

I don’t know how or why this happens, but sometimes people find themselves opening up to me, sometimes people find their emotions bubbling very close to the surface and I appear as a likely vessel for the overspill. I don’t like it when people apologise for this – never, ever apologise for breaking and opening to me, I am always honoured.

There was a lady who was experiencing triple vision. It was scary and disorienting for her, she found it hard to recognise where things were in space and how to navigate herself. She was also experiencing hallucinations of dead relatives, come to speak to her, to guide her perhaps. I found her like this, we did some testing, and then she began to talk. She told me that she was afraid, she became quite tearful, she told me that she had never felt this way before and didn’t know how to deal with it.

As usual, I was laughably unqualified to deal with this situation, and yet deal with it I must! I don’t have the knowledge or the experience to dare to offer a genuine psych treatment plan, but I’ve found a few tools which seem to work in every situation.

  • Mindfulness. Being present in the moment, allowing yourself to breathe, take a second to take everything in, listen to your breath, listen to how your body feels – there, stay with me, okay?
  • Taking things one step at a time & having realistic goals. You don’t need to worry about what’s going to happen a month, a week, a day from now. We’re just going to get through these next few moments together, and I’m with you. One step. Don’t worry about how you’re going to get back to work, how you’re going to live at home – let’s just focus on the little things for now, such as learning how to make a tea again.
  • Being kind to yourself. If I had a car accident and broke my arm, you wouldn’t expect me to get right back to work, would you? You wouldn’t expect that I’d immediately be able to wash, dress and care for myself to the same standard as I did before the accident, right? So you shouldn’t expect that from yourself. Just because you can’t see your injury doesn’t mean it’s there. The brain is plastic until death, it can and will rewire itself, but you need to give it time – and celebrate the small victories. When you do learn to make that tea, congratulate yourself! Take a moment with that tea to remember what it felt like to not be able to make it, and how it feels now that you did it. Tell yourself that you’ve done a good job, be proud of yourself – I am proud of you.
  • Empathic reflection.
  • Active listening.
  • KINDNESS.
  • Being there. Not working, not rushing, not doing. Just being there, as a full person, with a full person. I am here, I am real, I am with you, I see you, I hear you. Right now, right here, you are not alone.

These things happen on hospital beds, behind hospital curtains, inside hospital wards. People break and remake themselves, lose and find themselves, over and over. It frustrates me that I never know what happens to these people after they leave the ward, but in some cases I think it’s better that way. It’s hard to be closed when someone breaks open to you, and I think that maybe I am most useful as a novel, singular experience – that maybe continuation of my presence would inhibit the candour we cultivate in those spaces? I dearly hope that to at least some of these people I was experienced as a relief, a break, a haven, a person they could really genuinely talk to and be with, if only for a short while.

‘You’re going to have to repeat that’,

I tested a man who was blind in one eye and very deaf. I find it hard to test patients with sensory impairments to this extent, because it makes communication very stunted and awkward. I was basically shouting at him, and continually had to explain things in different ways or mime things to allow him to understand.

It’s frustrating because I didn’t want to treat him like a child – he was still there, it was just hard for me to get to him, and he to me.

He mentioned that he would often ‘work backwards’ to understand what was being said of him – if he missed some phonemes, he would retrospectively ‘fill them in’ afterwards, using the context of the rest of the words. I’ve come across the phonemic replacement effect before in cognitive psych, but I hadn’t come across it so clearly in a real world situation before.

It was startling at how much this man relied on ‘filling things in’ after the fact, and it got me thinking about how much of everyone’s perception is coloured by their perceived context. Everyone does this intuitively every day, but it isn’t an issue for most people, and mistakes are rarely made. Once your hearing begins to leave you however, it becomes much more important, crucial, to your understanding of the world.

It got me thinking about how deterioration of the senses plunges us unceremoniously into our inner worlds – perceptual biases, expectations, previous experiences have much more of an influence in our perception of the world. I was wondering as to whether the last roads of life are in fact vivid in their content – it’s just that the content is based on memories of the previous roads, rather than what is found in the present road.

I never want to patronise, I never want to coddle. I know there is still a full person in there, always – they’re just under the waves. Whereas the water used to be calm and clear, disruption of the senses creates waves, choppy and murky, and the light and the sound is filtered through the mess. My job is to be as clear and consistent as possible, so that my presence and intentions can be perceived as best as they are able.

“RNM”

Two very interesting things happened today~

In one instance, I observed my first electroencephalogram (EEG)! It was beautiful. I’d come across EEG often in my studies, and so I had some insight into the process and the readings. As is becoming a common occurance now, I had a moment of disbelief that what I was seeing was real – actual brain activity recorded right in front of me?! In a way that I could interpret? The technician was exceedingly competent and lovely, and talked me through what she was doing and answered my questions. I was enthralled with the reading, and we identified beta, alpha, a couple of theta waves. We watched as the patient became drowsy, we watched his motor cortex soften, and the beginnings of waves and structures forming out of the lines. We watched a sound from the corridor register, we watched the movement of his eyes. We began to whisper as we read that he was drifting off, and she waited until he stirred himself from his reverie before asking him to open his eyes.

In another instance, a man who has recently been physically & mentally abused and implanted with a thought transmission device inside of his ear is asked to leave his ward and have an MRI. He arrives to find two strangers insisting that he is having an EEG, and complies. He is told that one of the strangers is only there ‘to watch’. He, being a polite and personable fellow, informs the room of the implant – it was forced inside him against his will, and they now use it to transmit images and sounds into his head, and also to read his thoughts. He informs us of the doctor on his ward who is trying to convince everyone that he is crazy so as to continue the abuse. He tells us of his rape, and how he is meeting his mum for lunch today. He is cooperative as 36 electrodes are places on his head, and his brainwaves subsequently recorded. He drifts off.

I’ve been thinking a lot about how one endeavours to ‘do no harm’. I’ve come to understand that real and imagined harm are chemically identical. I’ve been wondering on what it is ‘to help’.

I just want so very badly for this man to have a nice day.