This powerful insight into a daughter’s perspective on palliative care and pressure ulcers written by a TVS member who’s location and identity have been withheld to protect privacy.

Mum is in hospital…

She has a hospital acquired DTI on her left buttock (left sided weakness after a very dense stroke). She had such beautiful skin before admission. Great skin! It wasn’t vulnerable at all.

How do I feel?

As a TVN daughter – annoyed – how did it happen to someone who is well nourished with previously great skin. Do I complain? Everyone is so kind. But this was avoidable surely?

During my only visit (Covid visiting restrictions were still in place) to see her, an extremely kind Health Care Assistant (HCA) who was wonderful with her and giving beautiful mouth care, told me that they leave her 4 hours at night because they don’t want to disturb her. She also noted that she had seen a slight deterioration overnight in the wound probably because of this! This came with a kind ‘it’s a shame’ facial expression. She didn’t know I was a TVN.  Why is she ok to be left 4 hours at night when staff know that her skin is deteriorating, yet they insist on moving her every 2 hours during the day?

So many questions…

As a TVN I have so many questions. But as an exhausted relative who just wants to talk to the consultant to find out the prognosis, the words ‘but it’s not too bad’ from the HCA, weirdly seem to be enough. I never thought I’d feel like that. However, I’m way more interested in what meds she’s on and why, what is the plan, what is in her best interest, will she be fast tracked? Can we have her home for end-of-life care and if so, can I give anticipatory medication? Her skin damage was the last thing I was thinking about.

So mum was fast tracked

We were asked ‘Would the family be willing to reposition her overnight’. No! I can’t! I must sleep. We are all exhausted already and she’s not even home yet. It was an easy question to answer, and I have asked that question before myself. Some families, amazingly, get up in the night and do this. But there is equipment to help with repositioning.  How do those families do it?  I honestly don’t know.

I finally got the equipment to help with the repositioning on discharge, but I had to fight for it. Was it not for my experience I honestly don’t think a lateral turning system would have been considered?

At home

Now she’s home – of course, I’m doing the wound care. It’s a Category 3 pressure ulcer, thin layer of slough, no induration, no signs of infection. She also has a mixed pressure and moisture lesion 5x10mm just to the left of her natal cleft. I have surprisingly little interest in the wounds. My main concern is her comfort and contentment. Her wounds are not bothersome to her. I know the acute trust logged it as a Category 2. The District Nurses will report it as a hospital acquired Category 3. But will anything actually happen? Again, my disinterest surprises me.

Would I risk further skin damage by limiting movement to keep her settled? Absolutely!!!! I just want her comfortable. She moans when the fabulous carer’s role her to be washed. It’s so upsetting to hear her through the door as a relative.

Am I pleased I have the turning system? Absolutely! Does her skin 100% need it? I’m not sure – pillows and tilting off the affected side might have been enough. The community nights team could have moved her once a night maybe. But does that equipment benefit her as a person and us as a family? Absolutely yes. She is more settled. Disturbed less. She is off the affected side all the time.

What really makes a difference?

This sounds like a promotional piece for lateral turning systems. It’s not! I know they are not suitable for everyone.  I know they are expensive, and we have budgets to manage. This is a promotional piece for holistic care and consideration of what patients and families really need when end of life patients have pressure damage.

We needed the appropriate equipment. Prior to fast tracking, we needed a review of strange rituals like 2 hourly repositioning during the day and 4 hours at night.  In the last days of life, we needed symptoms managing and the avoidance of unnecessary manual handling. It would have been so hard if a DN had visited when mum was just settled and had to move her again to change dressings.

The wound didn’t deteriorate in the 12 days mum was home. This was such a relief. Deterioration and malodour would have been so difficult to deal with as a family.

What did I learn from this? 

I learnt that caring for a relative at the end of life is upsetting, exhausting and extremely difficult. I learnt that avoidable pressure damage still happens on acutely ill people who have peachy perfect skin on admission.  I learnt that strange repositioning rituals still exist.

I learnt how important it is the get the right balance between end-of-life care and pressure ulcer prevention and management, specifically, no non-essential moving and handling. But how do we define what is essential?

I learnt how having the appropriate equipment all in place prior to discharge can make a huge difference but most of all, the management of end-of-life symptoms, particularly pain and agitation, are the absolute priority, even if skin is placed at increased risk.