Ouch! When the "care" is missing from healthcare

This year I've been focussing on communication and empathy in health care.  Working with undergraduate students in a range of health care professions, I was heartened and optimistic about their views towards patients/clients and thrilled that they seemed to want to work with patients and their families in an empathetic way.  It was hard to reconcile their attitudes with the studies done by Monash University that show empathy declines during the course of study and falls off a cliff in the first year of work in most health professions.

This week, I've been face to face with the health system in New South Wales and I am completely disheartened and appalled.

My Dad required emergency treatment for a potentially life threatening condition.  He lives in rural NSW near a large regional city and another smaller country town.  He was admitted to hospital in the large regional city, but required a surgical procedure which could only be done at the nearest "tertiary hospital" which is the John Hunter Hospital in Newcastle.  After four days he was transported by air ambulance to Newcastle.  He was treated yesterday and seems to be on the road to recovery.

He's also on the road to nowhere.

We needed to get him back home after his treatment, about four hours or so away by road.  All family members who live nearby are unable to drive and the rest of us live in different states at opposite ends of the country.  We would need assistance to get him home, but were being told by the Doctor he could not travel by bus or train and then by a very cranky nurse that the Doctor didn't know what she was talking about and that of course he'd be fine to travel on the train.  Who should I listen to - the cardiologist or the nurse?

I swung into action, calling my contacts in ambulance and health to find out how to solve this problem.  All the advice I was receiving was that he should be transported home in the non-emergency patient transport provided by the ambulance service.  As a paid up member of the ambulance there would be no cost to him and there would be no cost to the hospital, but a Doctor needed to authorise the booking.

Hospitals are impenetrable.  They are lumbering institutions that require insider knowledge to get what you need and find who you need.  I took a deep breath and called the one number listed on the website.  I was put through to information.  Information put me through to a lovely Doctor who was in the intensive care unit and had not met Dad and knew nothing about his case.  Dad wasn't in the ICU.  I explained the situation to the Doctor and he agreed that suitable transport should be arranged.

No one called me back, so I called again and was put through to the Registered Nurse on Dad's ward. This nurse had the tone and attitude of someone who has forgotten what their job is all about.  She spoke to me like a naughty child, talked over the top of me, was impatient when I asked her to listen to me and dismissive of my concerns for my father.  She said she would talk to the social worker and hung up the phone while I was in the middle of explaining the family situation, including the fact that Dad had no clothes with him, only his pyjamas.

After 20 minutes, I called again.  I asked her why she had hung up on me.  Her response was that she told me she was going to speak to the social worker and she already knew what I was going to say.  Again, her tone was horrible.  I told her that I wanted to have a conversation with someone about my father's situation to get a better resolution than putting him on the train to a town he doesn't live in.  She then argued the point with me about where my father's home is, interrupting me again to confirm with my father where he lives.  As if I don't know where my father resides! I asked her to change her tone and speak to me with some respect and empathy for the situation and she told me that wasn't possible.  Apparently I had offended her when I said she was wrong about where Dad lives.  I asked to speak to someone who was interested in helping us, she said that wasn't possible either.

She then proceeded to shrilly tell me that I shouldn't be concerned.  He'd had his procedure and lots of people have the same procedure and he's fine! What's the big deal?  She said - in the most condescending tone possible - that Dad was sick when he came in and that's why he needed an ambulance.  The hospital had made him better, so he wasn't sick anymore and now he just had to go home.

Here was a blinding lack of empathy for me to confront.  I heard myself echoing something I said in the empathy workshops I facilitated during the year:  "This might be routine for you, but this is the most serious health concern my father has ever had.  It's the first time we've dealt with something like this and it is not routine for us.  I'm a long way away and trying to be supportive and organise everything on the phone from Melbourne, I need your help!"

She then advised me that normally the family would collect a patient.  Just what I needed - judgement.  I'd had no impact at all.  She had become institutionalised and part of a system that obviously sees the people who are meant to be served as an annoying inconvenience.

I asked to speak to the social worker.  "That's not possible," came the reply.

"Why not?"

"She's gone home for the day."

"What's the social worker's name?"

"I can't tell you."

"Why not?"

"I don't know her name."

"How many social workers are there?"

"One."

"And you don't know her name."

"No."

"Not even her first name?"

"No."

If this nurse had been empathetic to our situation she would have just told me that the social worker had gone home for the day and that she wasn't sure of her name but would leave a message for her to call me in the morning.  It didn't need to be that hard.

Even when I explicitly said I wasn't looking for a fight, she expressed frustration that she had become the meat in the sandwich.

"Why? What's the sandwich? Aren't we all working for the same thing?"

"What do you mean?"

"To look after my Dad and make sure he travels home safely."

She had no answer.  She was clearly viewing us as a battle to be fought and won.

It appears that the clinical care has been great.  Hopefully the procedure will make a big difference to Dad's health and well being.  Clinical care is not the whole picture though and I'm surprised at just how lacking the broader care has been.  In regional Australia, in this hospital, it must be common for people to be admitted to a hospital far from home and need to get back to where they came from after they've been treated.  I hate to think of all the other people facing the same dilemmas.  To be a patient subject to the a nurse who is a bully is a significant power imbalance - all at the time when you're trying to recover from surgery.  How can you advocate for yourself in this situation?

I've been researching about the hospital.  Like most big organisations these days they have a statement of rights and responsibilities for patients, including values.  Sadly, there is a big gap between the big statements of values and the lived reality for one patient and his family.

I really hope the awareness of the need for an empathetic approach to care will make a difference in the future.

Now, I'm off to research the complaints process.

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You might like to read this earlier post about empathy.