I was bemused by the question. The only reason she could possibly need a DNR was if she fell off the rowing machine in the care home gym and sustained a terrible injury.  She was there to have a lovely mini-break before heading home revived and invigorated.

Of course they didn’t have a rowing machine in the care home.  The question about a DNR was because she was at the end of her life, just 3 days away as it turned out. 

In the years since her death I have gone back over her time in hospital: conversations we had as a family, with the medical staff, with her GP, and conversations in the care home. All I can conclude is the one important conversation – about her impending death – never took place, or if it did, we didn’t take it in.

Without that conversation we became onlookers to her final weeks and days, hovering about her bedside wondering what we should be doing, and wondering why more wasn’t being done to help her get well enough to go home.  If we had had the conversation early on, we would have done things differently; we would have prepared ourselves and her better; would have used the time we had more wisely.  We could have spent the time considering her life rather than being surprised by her death. 

Mum had a stroke in her mid-70s spending weeks in hospital.  Her leg was permanently affected, and she was certainly not quite the woman she had been when she finally came home. Over the next decade her mobility reduced, as did her dexterity, and eventually some of her cognitive function. 

Mum was determined, fierce and stubborn, but also sad and frustrated through her long decline. Dignified and proud all her life, becoming unable to put on her shoes, the daily struggle with tights, skirts and buttons; no longer being to drive, go to the hairdressers on her own, or walk unaided, all contributed to the frustration and sadness.  And who can blame her?

Dad tended to her every need with humour, love and empathy. The house filled with equipment over the years, a rollator, stairlift, shower stool;  funny shoes, stranger gadgets, ramps, grabrails etc. We had undignified conversations about incontinence and mobility and tried to make the best decisions for and with her.  We never discussed death either with her or separately. It was a long way off despite everything. 

Mum’s final decline was rapid: a stubborn UTI triggered a whirl of activity from the community nurse and GP surgery, daily visits and the arrival of more kit at home. However, one sunny Friday it was felt that she should go into the local cottage hospital, to deal with the UTI, and because she was deemed unsafe at home, despite the gadgets, gizmos, Dad and visits. So, off she went, with us assuming this was a temporary state of affairs  to deal with the UTI and get her health back in order, relatively speaking.

After a couple of days in hospital Mum pretty much stopped eating despite Dad’s daily food parcels.  Then she stopped talking, becoming distant and glassy-eyed, just nodding and occasionally smiling.  She was given a catheter, and over a few days, became bed-bound. 

We saw the decline but we didn’t see it for what it really was, rather a combination of hospital life, being away from home, and a worsening UTI.  We were frustrated by the lack of progress and what seemed like an abandonment of Mum to her fate, whatever that may be.

The nursing staff deftly sidestepped our questions about Mum’s progress, and whilst caring and kind, were quite distant with us. Being there at the time of ward rounds and the chance to collar a Doctor was occasional good luck on our part. We felt increasingly powerless, unable to help her. After two weeks we decided in consultation with the hospital and her GP to move her to the care home.  

This gave us a sense of some control and participation in  Mum’s care.  A chance for her to recuperate from the stresses of the hospital.  Looking back now, it seems more than a little ridiculous that we thought Mum, now a glassy-eyed, non-verbal, tiny sparrow of a woman curled up in a hospital bed, was going to bounce back.  But, in the absence of the conversation, how else could we have felt?

A day after Mum’s arrival at the care home the reality finally became clear. We were concerned by the lack of a plan: that there were no sessions in the gym on the imaginery rowing machine, or time with a physio.  No discussion about when she might go home. In frustration once again we called her GP to ask why nothing was seemingly happening.  Finally the conversation occurred.  Palliative care. Keeping her comfortable. Family around her. 

She died 2 days later drifting away over 48 hours. The first night the care home staff confidently told us to go home and come back in the morning.  The second night, we were told again to go home but this time our contact details were double checked, just in case they needed to get in touch in the night.  

We did receive the call, and we spent her last hours with her all together as a family. The medical and care staff withdrew. Finally, we were no longer onlookers. 

Perhaps everything did happen in the right order at the right time.  Maybe the conversation was had when it should have been. Hers was ultimately a peaceful death and we had the privilege of being with her. Does it matter that we didn’t have the conversation sooner as it wouldn’t have changed the outcome?

There are practical considerations about how families are involved at the end of life in a hospital or care home. There are much bigger moral and ethical conversations to be had about over-medicalising death. There are discussions to be had among families well before the appointed time. My abiding thought is that had we recognised the outcome sooner we would have had more time with Mum, rather than squandering the time we did have frustratedly trying to maintain her life.  Hope springs eternal. 

Author: Annabel James