Issue no.1 – HCA philosophy / For a new relation with patients

Sometimes the hospital is overwhelming. It is like a massive waiting room of social crisis. Hundreds of people who are weak or dying, but have no families and friends. People who are homeless and have nowhere to go. Young mothers whose kids are in care. Prisoners who can hardly walk to the toilet, but are shackled to the bed with two gorillas sitting next to them. 

We can see the state that society is in, like a barometre or social sensor. Sometimes I enter the hospital, in particular before night-shifts, and it feels like a cathedral or a temple. There is no place in society, no church or other place of worship, where there is such a concentration of existential or vulnerable feelings. Hundreds upon hundreds of patients who feel the fear of their lives, who are scared of death, who feel relief, who feel vulnerable and lonely. There is such a massive amount of existential energy and opening, but the hospital atmosphere reacts to this energy and opening with an often sterile, professional formality. 

Of course, as HCAs we are friendly to the patients who we care for. But more often than not it is a superficial friendliness. Everyone is scared to intrude. No one has time to ask questions beyond “do you have children?” or “how are you feeling today, my dear?”. What would happen if we actually tried to talk about our lives and how we ended up where we are? As HCAs we have an enormous chance to relate to patients differently, because the patient is not in awe of our highly educated medical status, because we already have some sort of physical intimacy, and because we have more time with the patients than our fellow nurses. 

This series will present reflections on the relationship between health workers and patients. We tend to see ourselves as different from the patients, and sure, they are in a different situation and position when they are in hospital. But unlike, perhaps, the middle-class life coach who would want to teach the COPD-ailing truck driver on the respiratory ward that he should have made different life-style choices, we, as workers, understand the condition of the patient. We ourselves lead lives of 12-hour shifts, which leave neither time nor resources for sophisticated life-styles. We want a reward at the end of the day: something sweet, a nasty donner, or a gin and tonic. After a week of being pushed around, of feeling trapped in a hamster-wheel, we want some release at the weekend – if you manage to have a weekend. Long hours and shift work is not good for friendships or marriages either. Many of us have arrived in the country recently. Feeling lonely and down and overwhelmed is not uncommon and has a toll on our own health.

Long story short, we can understand most of our patients, because we understand what it means to lead a working class life. But this is hardly ever talked about. It’s all about eating healthy and mindfulness, which might make us feel even worse, because now being or becoming ill seems like our own fault. 

Memories. “I work on a respiratory ward. One of my patients is a former ballet dancer in her early 50s. She had a stroke or a tumour, half of her skull-bone is missing. She is bed-bound and non-verbal, but she can clearly show what she wants and what she doesn’t want. She has aspiration issues, food gets into her lungs and causes infections. She has a single room. Her husband is with her most of the time. They kiss very passionately. I overhear a conversation between two nurses, who complain about the snogging. First I think that they worry about consent issues. But when one of them says “this is a hospital” I understand that they think that physical intimacy is not appropriate in a medical place. Here even lovers are supposed to act professionally and see the patient primarily as an object of care”.

On the basis of being workers, whether in the position to care or in the condition of being sick, we can slowly start to support each other beyond the formal and sterile atmosphere of a hospital. The formal hospital atmosphere pushes most patients into two modes: either they become passive victims who hardly dare to question the ‘medical professionals’ and who feel like a nuisance and are forced to be grateful for just about everything; or they feel that they are entitled to the best service, as taxpayers and people who might not have stayed in many hotels in their lives, and see us health workers primarily as second-rate waiters and chamber maids. It’s the structure that pushes people into these modes and neither mode allows us to develop a relationship of solidarity and equality between worker and patient. As workers we should help patients to ask questions, to make informed choices, to ask for resources, to open up and reflect on our lives together, to allow emotions beyond gratefulness.

Memories. “I work on a ward that I call the purgatory. It is where they put the old and confused before they send them back to the care homes. You probably know which ward I mean. I am in a female bay. An older woman is in a state of constant anxiety, she shakes, breathing rate 26 plus. She repeats that she has to pack the two bags by Tuesday, when she will be discharged. It is Sunday. I tell her that she should not worry, that it is still early days, that we will help her. That makes no difference at all. My colleague tries the same, again and again. We are busy. We try to calm her down while bringing her neighbour to the toilet and brush the other one’s hair. The older woman is frustrated and she frustrates us. When the hectic morning is over, I just want to sit down and look at my phone. After a while I go over to the woman, who is still distressed and still talks about packing bags. I tell myself: ‘be attentive’. I sit next to her and hold her shaking hands. She starts about the bags again. I ask her what is waiting for her at home and what she is afraid of. She tells me that she has only a nephew left and that she is worried that he won’t cope with sorting out her flat. She calms down for a minute, is more focused, but after a while she talks about the bags again. I ask her since when she feels so anxious. She stops and thinks. She tells me that it started with her breast cancer. I tell her that this is indeed very scary. I laugh a bit and tell her that it is probably less scary to worry about two bags than about being alone in a flat or cancer. That she chose her anxiety wisely. She laughs too.”   

There is beautiful stuff out there on true compassion with and attention for patients. You don’t need a psychology degree. There is a geezer called Oliver Sacks, you can find a documentary about his life on the popular education channel YouTube. He talks a lot about ‘narrative medicine’, meaning how important the entire biography of a patient is when it comes to their illness. There is stuff that Simone Weil wrote about ‘attention’ in the 1920s. She says that love is not primarily a cuddly, passionate or motherly feeling, but giving another human real attention. There is a pretty good book called ‘The Body Keeps The Score’, about how trauma is stored in the body and that, perhaps more than a shrink, we need creative, friendly, collective and physical experiences to unlock that trauma. This is a pretty random list, but it all helps to go to work and think that we can form true relationships, even if they last only a day or two.

In the end, good relationships don’t primarily need good will. They need time and resources too. As HCAs we have to fight for better staffing levels, so that we actually have more time. And there are so many more things that could help patients make the best of their hospital stay. Some are with us for months and you can see how they decline intellectually, emotionally and spiritually. They can have a telly, if they are lucky and it works. We have this sterile picture of hospitals in our head that leaves little to no space for utopian thought, where the time of recovery could be more social, more creative and more reflective. Tell us about your thoughts and experiences!

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