The option for compassionate end-of-life care

This post, When All Options Have Been Exhausted, from Still Standing magazine has been on my mind since I read it a couple of days ago.

The post describes one bereaved mother’s experience of the end-of-life care for her baby son. She says that knowing the doctors were out of options for saving her son’s life has helped her in her grieving. The post also makes the excellent point about the importance of the distinction between saying “There is nothing more that can be done” – that is, in a medical sense: there are usually things that can be done in terms of giving someone a compassionate, calm death.

I nodded along to the post – so much of it was resonant and reminded me of the day that Hugo died. The post reinforces the need for honesty, and the consideration for appropriate vocabulary when delivering bad news.

Hugo died aged 35 days from extreme prematurity and chronic lung disease, having been born at 24 weeks. During the last few days of Hugo’s life we were aware he was very sick (although I did not want to admit that to myself – I was holding on to every shred of hope). Every possible treatment had been tried for Hugo, and although the steroid treatment had shown an initial benefit, he was effectively going backwards.

My beautiful Hugo

My beautiful Hugo

The day he died is forever etched in my memory. It was a Thursday: Grand Round day. A host of doctors gathered around Hugo’s incubator. One doctor read the details of Hugo’s condition and progress. The group of doctors would then make recommendations about next steps and treatment for the baby.

Each of the consultants gave their recommendation for Hugo: to withdraw treatment. Their decision was unanimous, no shadow of a doubt between them.

I was crumpled on the floor, sobbing and hyperventilating.

The way the news was delivered far from ideal. It is news that no parent wants to hear, but there are ways that would have been kinder, and less traumatic. I know the doctors did not mean to be unkind. They are kind, compassionate, and did everything possible for Hugo.

The main problem was the term ‘withdrawing treatment’, which is clinical and cold. It gave me a sense that we were putting our son down, as you might take a sick pet to the vets to get put out of their misery. It was unthinkable.

When things had calmed down a little, we were able to have a conversation with a consultant about the hope Hugo had – or the lack of it. We were told all treatment options had been exhausted. While keeping Hugo alive on a ventilator was technically possible, to do so would be cruel to him, living in discomfort and cruel to us to live in false hope.

Not wanting to believe I would not be taking Hugo home, and utterly heartbroken, I remember asking the consultant if there really was no more hope. His reply was simple, emphatic, and kind: no.

Skin-to-skin with Mummy

Skin-to-skin with Mummy

The distinction in Hugo’s care between ‘there being no hope’ and ‘no further treatment’ being worthwhile with ‘nothing more can be done’ is crucial. Nothing more could be done to save Hugo’s life, but we were able to give him a good death.

As awful as these conversations were, as painful as it is to remember them and as difficult as it is to write this post, I am grateful to the doctors for their honesty. These conversations meant that the end of Hugo’s life was able to be peaceful, and with the people who love him most: his mummy and his daddy.

Hugo hated being handled, and being poked and prodded by the doctors. He was at his calmest when he was on my chest, snuggled skin-to-skin between my boobs. Those conversations meant that Martin and I were able to do what we could do as parents for Hugo during his last moments. My heartbeat was the first sound my son heard, and it was also the last.

During the first few nights following Hugo’s death, both Martin and I were plagued by nightmares – both waking and sleeping – that we had been too hasty, that we had not made the right decision, that there may have been other treatments to try. The memory of being told that one simple word about hope for Hugo: ‘no’ helped a little by providing a rational thought during those most painful of times.

In the event, as we discovered with a meeting with a consultant a couple of months after Hugo’s death, Hugo’s treatment wasn’t really withdrawn as such: he told us, in his own way, that he had had enough of fighting. It is difficult to articulate what that knowledge meant to me: there is pride that my clever, feisty, tiny baby knew what he wanted and when right up to the end; and that I was able to comfort my son. To be a good mummy to him.

My message is this: the words that are chosen to deliver bad news are crucial to someone’s memory of the event. There are better ways to give bad news than how happened with Hugo’s care. Equally, it is vital to reflect that when all options to save someone’s life have been exhausted, it does not mean there is nothing more to be done: there are always options for compassionate end-of-life care.

Discussing and considering these options will not only help the person at the end of their life, but provide a small comfort to the bereaved in their heartache. That is a great gift.

Mummy, Daddy and Hugo

Mummy, Daddy and Hugo

 

 

24 thoughts on “The option for compassionate end-of-life care

  1. Brighton Mama @ Our Seaside Baby says:

    Hi Leigh, it’s hard not to cry when I read your blog. You must be such a strong woman to be able to write about this. It seems so much more needs to be done within the healthcare system and different words can make a huge difference. My friend lost her baby prematurely and had an awful experience in the hospital. I hope this post will be able to help other families in some way. My thoughts are with you & Hugo often xx

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    • Leigh Kendall says:

      Thank you for your kind comment. Talking about my experiences will hopefully lead to improvements for other families’ benefit, and it’s important for me to do this in Hugo’s memory. I’m so sorry to hear about your friend’s loss, and about the awful experience too. It’s awful enough to lose your baby, but when other things go wrong too…it stays with you. xxx

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  2. Michelle says:

    Im a neonatal nurse, and found your article incredibly moving. It is vital that we as healtcare professionals and advocates be sensitive and compassionate to EVERY member of the family, not just baby x

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  3. Catriona Ogilvy says:

    Reblogged this on The Smallest Things and commented:
    Communication matters, not only in the present but upon the lasting effect it has on the future as we look back, reflect and remember.
    NICU is a world far removed from any parent’s dream of greeting their new baby, a world where the most difficult of difficult decisions take place.
    How bad news is imparted and difficult decisions reached are integral not only to a parents lasting memories, but also for parents to know that the best or perhaps only decision possible has been reached.
    In her piece Hugo’s mum Leigh talks about the need not only for honesty, but for health care professionals to consider carefully the language and vocabulary that they use when delivering bad news.

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  4. Mummy Writes says:

    You know we’ve both been in a similar position regarding the ‘final prognosis’ and it’s possibly one of the hardest things we’ll ever experience. i totally understand all your feelings around ‘withdrawing treatment’, worrying then that we’d not done enough, realising in the end that they had to give up and let go… so much was the same with Abi. My heart goes out to you, and thank you for sharing this x

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    • Leigh Kendall says:

      Absolutely, the post you wrote yesterday about the final tests that Abi had was also in my mind when I wrote this. It’s so important to talk about the decisions we parents have to make at these times, to help medics better understand how it feels for us. Love and hugs to you as always xxx

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  5. meghanoc says:

    Oh yes. This post made me teary. I had hope for my baby too- how could we not, right? but I also was terrified she would suffer for no good reason. Because I knew the possibility of my baby’s death was real, we had met with the NICU docs while I was still pregnant and all I wanted was the doctors to tell me when. It came far sooner than I had hoped, but I remember the doctor’s words clearly- “it’s time to take out the vent,” he whispered quietly in my ear. I didnt cry. I actually was a little scared- not for what was actually happening, but because we were waiting for my dad to come back from the lobby and I was just so terrified she would die suddenly, with all the tubes and not as comfortable as she could have been, and not how we wanted. Luckily she held on long enough for my family to be there and we could help her die as peacefully (and privately) as possible.
    clearly this one resonated with me…future blog post perhaps.

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    • Leigh Kendall says:

      Bless you Meghan. Like you, while I had hope, I was terrified my son would suffer unnecessarily. I’d heard talk of ‘giving someone a good death’ before Hugo and didn’t really understand what it meant, but now I do – and how important it is for everyone involved. You gave Mabel what she needed – comfort and peace with the people who love her most. Hugs xxx

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  6. babylossmama says:

    Yes, yes, amen. Our doctors were so kind, so compassionate… and so firmly unanimously that it was time to let Ander go. And I love the thought that my heartbeat was the first and last thing that he heard…

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    • Leigh Kendall says:

      The thought about the heartbeat really is a comfort at this time, isn’t it? Knowing it was time to let Ander and to let Hugo go meant we could provide a mother’s comfort to our boys. Hugs xxx

      Like

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