End of life choices

Sometimes you read something that perfectly captures a scene or an emotion.  I envy that ability, more so when it is a difficult subject.  This opinion piece was a stand-out for me, it really captures with sensitivity and dignity, the challenges families have when facing end of life choices.

I remember the first of many times Grandma told me, “Emma, if I ever lose my mind, remember: I want them to just shoot me.”[…]

[…] She bought the neat brick villa and intended to die in it. She was not a cheery woman, but she was intelligent and strong-willed.

Despite this, she has not had any real choices since developing dementia more than five years ago. She is almost 93 and has spent the past four years in a nursing home. She has forgotten the existence of the spotless, quiet little villa with its carefully tended garden, and mercifully forgotten her rage and grief at being forced to leave it.
The facility is not the worst place of its kind. It’s clean, the staff are nice. But more than a year ago, Grandma was moved to the locked dementia ward, having developed the (understandable) habit of attempting to escape.

The ward has a hospital smell and a general air of quiet despair. We did our best to make Grandma’s room home-like – bringing in a couple of pieces of her old furniture, some of her old clothes and jewellery, pictures in frames, photographs and so on, but the stuff disappears, gets dirty and broken. The general effect is grim at best.

Grandma doesn’t know where exactly she is. She cannot speak and how much she recognises us is debatable.[…]

[…] The one thing the ward has going for it is familiarity. Grandma’s routine is all she has left.

Just under a year ago, this routine was badly disrupted when the home sent Grandma to hospital with pneumonia. She was “ramped” for hours outside Royal Perth in a harrowing scene and eventually stabilised and sent “home”. My Mum and uncle, as Grandma’s legal guardians, gave strict instructions that she must not be put through this again; if she gets sick, she must be made comfortable while nature takes its course.

On Friday night, pneumonia again attempted to shuffle Grandma off this mortal coil. Despite the instructions, Grandma was rushed to hospital during the night, without any family notification until morning. Grandma panicked and became aggressive, ripping off the oxygen mask, hitting at staff, refusing to take medication. They had to sedate her. They gave her IV antibiotics. They gave her an oxygen mask, pain relief, medications to bring down her temperature.

By the time Mum was notified on Saturday, they had stabilised Grandma. The doctor and nurse explained what they had done. Mum explained the nursing home had ignored the instructions. She asked them to make a note on Grandma’s record not to admit her again, unless she broke a hip. She repeated that she only wanted Grandma to be comfortable, pain-free and back in a familiar environment.

The staff looked, frankly, overjoyed. The nurse said she was relieved to hear it. She told Mum this happened so often in Australia; people were unable to let their relatives go and insisted on the full rescue procedure. In the UK where she was trained, this “aggressive” treatment of people who were obviously demented and old and ill was not customary.

Once cool heads had prevailed, they facilitated the discharge speedily. They took the mask off. Grandma calmed down instantly and recognised Mum. They removed the drip from her arm, put a blanket over her and removed all the dressings she had been ripping at. She settled right down. She was sent back to the “devil she knows” Saturday afternoon.[…]

[…] When I had visited a week before she had been walking around, at least able to put on some hand cream when it was demonstrated, apparently soothed by the sound of a novel being read aloud, able to form a kiss when I offered my cheek.  Now, she was a traumatised mess. She was huddled in bed at 10.30am, thin blanket drawn up over her thin shoulders. A “crash mat” lay beside the bed, in case she fell out. Her pillow and sheet were covered in coughed-up mucous. Sick and scared, she had refused to get up so the nurses could change them. They let me try, and I cuddled and coaxed her for half an hour to let me change them, but she would not move. Eventually, she pushed me and yelled. She had no words, but the message was clear: everyone get the hell away from me.

Eventually, I went out while they turned her to change the sheets, knowing they would have to force her to comply. I didn’t have the stomach to watch.

By Monday, Grandma was walking a little, eating a little. She is more confused, less co-operative. The nursing home has had a refresher course on our wishes. Some people can have a high quality of life with dementia. Grandma is not one of these people. It is time for her to go.

I’m not criticising professionals who do brilliant jobs in challenging situations. I’m so grateful Grandma has care that we cannot provide. I know miscommunication and lost paperwork is inevitable. But I am disturbed by indications that it is normal in Australia to “save the life at all costs”, normal for families to push their relatives through hell because they aren’t ready to say goodbye.

It should be a no-brainer to have end-of-life wishes on file, readily accessible, instantly referred to in plenty of time to consult with families on the best move for a sick and fragile elderly person. It is every family’s responsibility to talk about end of life care and make sure everyone is on the same page, that values are voiced and respected.


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