Natural death: Patrick and Edith

My dad trying out ballooning in the last months before his natural death

I’m going to describe two natural deaths here.
First the peaceful death of Patrick, my father. You can see him up above, trying out ballooning in the months before his natural death,
Then the death of Edith. Of course, Edith is not this lady’s real name. I’ve made some small changes to her story to ensure patient confidentiality is maintained.

The reason I’m sharing these stories now is that the New York Times just published something titled When the Hospice Care System Fails. As many of the comments make clear, it’s less a criticism of hospice and more of an inditement of a medical system which doesn’t discuss dying with patients until there is little time left for any benefit. In the example described, the father/husband died less than a day after home hospice staff first visited. And he died in a way he and his family did not want – in a hospital rather than at home, after distressing CPR and intubation.

But I was almost more concerned when the doctor wrote:

“I simply have no idea what it must feel like to be at home watching a person you love take his last breaths. Sometimes that reality is untenable. I’m not sure it’s even possible to fully ready yourself for this. Of course people get scared and plans fail.”

It’s admirable that this doctor is not claiming to know about something he has no personal experience of.

But it’s very deeply worrying that this doctor has “simply no idea” about home / natural deaths.

I think if doctors like him – in the UK as well as the USA – were more, knowledgeable about these, they would feel happier to talk earlier with patients and families. And we could all work together to ensure that home hospice services were even better than they can already be

So first, my dad, Patrick.
In essence, he died in a hospice because my mum didn’t want her husband of 50 years to die in a bed she would have to sleep in again,
In the hospice there was no medical care beyond medication that could have easily been given at home. I did a very large part of my dad’s personal care.

And it was just him and me when he took his last breath, when he had a peaceful natural death.

If you want to read more about this, see: http://www.carolinemawer.com/heartbeat-word

Next, Edith. With no family, she had been living in a care home for some years. The hospice staff who had visited her were effectively offering ‘hospice at home’. I was asked to go and see her one weekend when I was working as an out-of-hours doctor.

Edith’s story:

I knock and go into Edith’s room(1). There’s a haze of talc and an overpowering fragrance of lavender and Edith herself is just a wisp of white hair beneath a mound of bedding. When I dig her out, it’s obvious that she’s always been small. Now though, she looks like a skinny kid drowning in her mum’s nightie.

She’s not talking, and I’m not sure if she can hear or understand me, but I ask her if its OK for me to listen to her chest. I can see from her skin that she’s not dehydrated. Her bottom and heels — the places bed sores start — are fine, which shows the high quality of the nursing care. Her lips are dry and I tell the care assistant how this might be improved. As I do up the teeny buttons on her nightdress, I notice there’s not even a single photo beside Edith’s bed.

The care assistant and I go out into the corridor and I ask: “What about her family?” I’m told that Edith has never married. She’s the age, now I come to think of it, for having had a fiancée who died in the War. Apparently, her neighbour was in yesterday to see her. He knows that she is terminally ill and will be back again to see her tomorrow.

A woman strides up to me and insists on a full update from me about Edith. I’ve still got a list of other visits to other sick people. And the phone queues are backing up at the out-of-hours centre. But the lady grabs my arm and immediately rings to get the necessary permission from Edith’s next of kin. Edith’s neighbour has had to take on that role too.

From what I can hear, she doesn’t seem to know the neighbour well, if at all. I wonder how much she already knows about Edith’s current situation, and how much it’s really appropriate to tell her?

If I talk about ‘Dying’, I’m going to be asked ‘How long has she got, doc?’ When I never know the exact answer to this question.

There’s lots of evidence that doctors are not good at judging when, or even if, someone is dying. It’s not just me. ‘Dying’ is  — technically as well as emotionally — a difficult diagnosis to make. I met Edith maybe 20 minutes ago, and she hasn’t been able to speak even a single word to me. I’m definitely not going to bring up the topic now, I decide.
I say: “Let’s go in and look at this lady together.”

And when we all troop in, I’m grateful that I always talk to family and friends in front of the patient. Because Edith is herself very definitely bringing up the topic of dying.

She has just started Cheyne-Stoking. This irregular breathing happens towards the very end of life. It’s confusing and can be distressing to watch as dying people repeatedly seem to stop breathing. Is she dead? Or isn’t she? She is … No, she isn’t ……… Yes? …………………… No! ……….Yes …………………………. No! ….. and so on and so on, sometimes even for several days.

The visitor does a little gasp and the care assistant starts prodding Edith’s chest to try to get her to breathe better. Cheyne-Stokes breathing is never improved by poking the patient, and I move in to stop this. Without saying anything of course, since the visitor doesn’t need to know that the care assistant doesn’t seem to understand what is going on.

I sit down on the edge of Edith’s bed. The infection control regulations say I’m not supposed to do this, but down here, I can physically block the care assistant. I look up at the visitor and ask her with my eyes if she wants to sit where I am. She shakes her head, but doesn’t move away, so I concentrate back on Edith. I stroke and then gently hold her hand. I smooth out her tufts of silver-white hair. I’m beside her, simply sitting with her.

Really quite quickly, Edith stops breathing. Though, of course, I wait a little while because those Cheyne-Stokes are often deceptive.

When Edith really has taken her last breath, I stand up and ask the visitor if she is OK. I don’t even know this lady’s name, but she’s just become my almost-patient and I need to look after her.

“I’m alright”, she says slowly, “I’m alright”.

“Did you know how unwell she was?” I ask, cautiously.

She tells me that she hasn’t seen her friend for many years, since before the dementia and all the strokes took hold. “We used to be really close”, she tells me.

I say: “Many people might not have managed as well as you, with what just happened”.

She looks straight back at me: “You were calm, so I was calm”.

As she says this, I know that we are sharing human kindness. She is giving me a gift, just like she’d seen me giving her friend a gift. This was one of those important times that come in everyone’s life. Gifts make them easier. Easier for everyone.

“I’m going to let her neighbour know she had someone with her right at the end”, she tells me.

I’m privileged and proud to have been that someone.

Doctors don’t often witness a natural death. We’re there for many more of the ugly drawn-out ones. For the futile resuscitations. But not so many of the peaceful natural deaths — partly because no-one needs a doctor for a peaceful death. It’s a time for families. And I just got to be a part of Edith’s family.

Edith’s friend smiles at me. “Everything was done”, she says. “Everything she needed was done”.

She hugs me. And I smile back at her.

 

(1): Edith is not this patients real name. I have removed the most undignified parts of her story, and made some small changes so that she and her friend cannot be identified.