What not to say

Last week’s Medsoc was, again, quite an experience for me.  I was out with one of the community palliative care nurses.

Our first patient was a elderly woman dying from cancer, I can’t remember where it was.  She’d fallen and taken a nasty bash to her head in the night as a result of going down to sit in the living room, but still refused to be moved downstairs.  Most of the visit was making sure her pain was under control and discussing further options for that.  Her daughter was a nice lady and the husband came across as strong and resilient but had to leave when we asked him about how he was coping.  I’ve got used to seeing old men fall to pieces.

The next patient was described as a “bit of a cross lady”.  I braced myself.  Unnecessarily.  She turned out to be a clinical nightmare, but certainly wasn’t as bad as she was made out to be.  She had pancreatic cancer and the effect it was having on her bowels was beyond belief.  The trouble was that she would not adhere to any medication or guidance.  One day she’d pop more loperamide than you could shake a stick at, the next she’d cut those down and hit the opioids.  She certainly wasn’t helping herself, and was very difficult to consult with.

In my opinion she was just very scared and needed someone to talk to who knew how to.  She certainly didn’t like this nurse, or many of the other clinical professionals she’d encountered.  I was told that this was probably because of her experience with breast cancer thirty years ago – the aggressive radiotherapy had damaged her brachial plexus, leaving her arm useless.

Her husband pipped in at one point, asking me about the chemotherapy.  I said I was just a 2nd year medical student but that didn’t stop him.

“The stuff stays in the blood, and your blood must turn over every so often right?”

“Yeh, sure.”

“Well, once that happens there can’t be any more of the chemo left in her system and THEN we can start to get her bowels back in order.  How long does the blood take to turn over??”

I thought back to what I knew about the average life span of red cells.

“4 months”

Mistake.

“Hmm.  Well she finished the chemo in October and its March now so that’s more than enough time…”

His wife, the patient now became upset.

“Oh God, it should have been OK by now, whats wrong with me??”

At this point I quickly interjected that I was just quoting a figure from a textbook and that they could not use that clinically, but the damage was done.  I later kicked myself for saying anything.

The last patient was at once a sad case and tragically absurd.  An alcoholic ex-fireman had a huge tumour down the side of his neck.  He couldn’t speak for very long at once, and swallowing anything was out of the question.  He was fed by a PEG tube (I think that stands for Percutaneous EndoGastric tube), which is just a tube straight to the stomach.  His wife kept asking when he’d get better, and had been doing so for month.  He wasn’t.

I sat and chatted to him for a few minutes while the nurse washed her hands and spoke with his wife.  He was nice enough but conversation was obviously limited to a few sentences.  He spoke about much he was looking for to this all being over so he could get back to the pub with his friends.  I could only smile gently.

The nurse outside told me he was still drinking.  When I asked how, she said he’d been injecting the booze down his PEG tube.  Wow.

More Medsoc distress, part 2

An elderly woman sat in a hospital bed staring through mellow eyes at the ceiling. She looked dead to me. Suddenly she gasped in breath and then stopped breathing again. Her husband sat at her side, holding her hand. He greeted us warmly but was pulled back to her as she suddenly sat upright and shouted that she wanted to go to the toilet.

“You can’t get out of bed my love, the doctor said so”. I spied the catheter tube running down the side of the bed. “If you need to go, just go – it’s fine my love”. She laid back slowly and resumed her impression of a corpse. The husband chatted to us a while about this being the hardest part -he knew she would die any day. Just two days ago she’d been up and sitting in her chair. She had oesophageal cancer. He tenderly wetted her mouth with a small sponge and asked practical questions about if he should order more midazolam and when the loaned chair would be picked up.

Suddenly she sat upright again and looked around with wide eyes – fixing me with the most piercing stare I’ve ever experienced. She shouted that she needed the toilet again and tried to get out of bed. Her husband held her shoulders and said she’d been restless like this since last night. As he gently laid her back again, he started to cry. The nurse was talking about drug options for keeping her calm and this seemed to give him something to concentrate on. She tried once again to get out of bed, forcing the nurse to give her a shot of midazolam. I was left alone with her as the nurse washed her hands and the family left the room. I held her hand and told her everything was alright, feeling a bit choked up.

We left when it was clear she was sedated and the husband was OK.

The last patient was a 45 year old man dying of pancreatic cancer. He was the most lucid of all the patients I saw, sitting up and walking around. He was depressed about his situation, drinking a lot of oromorph every day and working his way through a cabinet of pills. I spoke to his daughter for a while, mostly about their dogs but I touched on how she was coping. Like all the other patients’ families she just didn’t know how they did it, only that there wasn’t any choice in the matter. His wife came back a little later, looking like she hadn’t slept for days. She hadn’t for 5, it turned out.

I spent a few hours after that sat in the hospice library, unable to concentrate, but glad to have come away from it all. At least I could get away from it – those families didn’t have the option. The experience gave me an insight into how the patients feel and how their family cope, but mostly it just left me feeling totally powerless to help. I doubt the feeling will improve when I’m qualified.

More Medsoc distress, part 1

Yesterday I was out with one of the community palliative care nurses from the hospice I’m spending this year’s Medsoc.  I’ve been out with community nurses before – just a few visits to elderly women to change the bandages on their leg ulcers, nothing major (or fragrant).  It’s a nice change from sitting in lectures, and it’s hands on.  The palliative nurses, much like the doctors, are so unbelievably nice and they really do know their patients – it felt like visiting friends, a bit.

You’d think, then, that I would have had a good day.  No.  The nurse was a lovely lady, but the nicest and most cheerful person in the world could not have made up for what I saw and heard.

We started on an elderly woman with very advanced Alzheimers and colon cancer.  She was sound asleep when we arrived.  Her daughters chatted to us and asked a lot of questions, but there was that heaviness in the air of total sadness.  They explained how she kept “plucking” in the air until recently when she became so weak she couldn’t lift her arms.  She was probably hallucinating.  Her husband came home and looked as though he was going to burst into tears any second.  The nurse reassured them about their actions over the last few days and checked her drugs chart –  a bit of Haloperidol and Midazolam with the pain killers.  We couldn’t do anything else so made our way out.

I was a little drained from that first visit, and it didn’t set me up well for the next encounter.

An oriental family gathered around their husband/father’s bed as he lay there, still, with an NG tube, stoma bag and catheter trailing away from him.  The family looked fine at first, but then the subtleties became obvious; the old dirty tee-shirts, the unclean hair, the tired bags under their eyes – a family under stress.  The fact they greeted me at all was surprising, but their assumed cheer and friendliness was quite startling.  I took care not to stand at the end of the bed, being tall and dressed in black (not something I would want to wake up and see, certainly).

Things seemed as well as one could hope for at first.  The patient greeted me weakly but heartily and his family asked me a few questions.  The nurse went off to another room and his wife and daughter stayed round his bed.  Two community nurses came and left.  I had sat down to speak quietly to an aunty when wailing pierced the sombre atmosphere.  Everyone swept to the bed and I saw it was his wife who was making the noise.  She was crying, the daughter too, and speaking in another language.  She switched to English, probably so the nurse would come back.  He had stopped breathing and squeezing her hand.

“Please pappy, wait for Charlotte!”, the daughter kept screaming.  It turns out Charlotte was an absent daughter.  My nurse flew onto the scene and quickly reassured the family that he was still alive but had clearly gone downhill (in 5 minutes!).  I looked closer and saw his laboured, weak breathing.  The family were convinced he was dead, or was going to be so in a short while, and the grief mounted as more relatives arrived.  No reassurance could help, but we stayed with them for a few hours.  Eventually we had to go to another patient and so we reluctantly left them in utter despair.

I sat in the car quite shell-shocked.  The nurse asked if I was OK and I put on a brave face.  We had lunch and went to the next patient.