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.

 

 

 

Debbies story

debbies story is about looking after her mum

Family members who have witnessed or taken part in unsuccessful CPR when their relatives are at the end of life are almost never heard from. But I think we all can learn from Debbies story: she’s a first aider whose frail mother collapsed at home, and who asked for her mum not to have CPR.

Debbies story: I’m a trained first aider. My Mum had lived alone since Dad died. She had always been independent, but she had four chest infections in a row last winter so I was staying with her. The problems with her chest were getting her down. She told me she was fed up with life, so I asked for a nurse to come round to assess her. Anyway, she went to the toilet, and I felt she was gone too long. When I went to check, I found her collapsed.

Faced with that situation, instinct and training kicked in. I got her onto the floor, rang for an ambulance and started CPR.

I know I broke her ribs — I felt a horrible, sickening crunching as they snapped under my hands. It was nothing like the dummy we’d practised on.

The doctors in A&E told me it was common in elderly people, but they never teach you that on first aid courses. And it was all so undignified, squashed in her hallway, and me knowing all the time that if I revived her she would probably never forgive me.

I don’t know how long the ambulance took to arrive, but it felt like forever. I was glad to hand Mum over to the professionals and did my best to pull her pants back up and try to restore at least a little dignity to her. They applied the paddles, and got her heart beating. But I couldn’t tell the ambulance service that I wanted to let her go. That I knew my Mum. That I knew there was no way she would want to live the remainder of her life no longer capable of being independent.

She was unconscious but they got her stable enough to transport her to hospital. I left in my car at the same time but arrived at the hospital before them. When they rushed her into A&E, the ambulance-men told me that I’d given her the best possible chance of survival, but her heart had stopped again on the journey and they’d had to resuscitate her again.

The A&E staff were brilliant. But on the way there I’d had time to think. Mum had managed to plan her funeral — she’d even written down what she wanted to wear, what to place in her coffin and the exact service she wanted because she’d been so impressed with Dad’s funeral.

But we hadn’t thought about the actual dying. And nobody teaches you the words to say when you want the doctors to let somebody go. Not to resuscitate them if their heart stops again.

It was not an easy decision but I knew it was right. Your head is saying “let her go” but your gut is churning and you desperately don’t want her to die. You also do worry about what the doctors will think of you — will they think you don’t care? Will they try to persuade you to change your mind when it’s already the most difficult decision you’ve ever had to make?

I could bear that the professionals might think badly of me. But I couldn’t bear that my Mum would hate me for keeping her alive without being fully restored to health and fitness and I just knew no doctor could do that. They agreed to make her comfortable, not to try resuscitating her again, and see how she fared through the night.

I was called back to the hospital at 4.30 the next morning as they thought the end was near. The doctors told me her body was shutting down. The decision to turn off the life support machines was easy, as was the decision to donate her corneas. If something good was going to come out of tragedy, that was a comfort. I held her hand as she passed away. But by the time I said the words I’d always wanted to say, my Mum was unconscious. I’ve been told that hearing is the last sense to go so I like to think she did hear.

No one wants their Mum to die. But who wants their Mum to suffer? I loved my Mum enough to try to save her. But I also loved her enough to let her go.

‘Debbie’ is not this person’s real name. But this is a real story, and these are ‘Debbie’s’ real words.

My comments:

Debbies story is clear about howDebbie truly did put her Mum front and centre — despite her worry that the doctors might think she didn’t care. I admire Debbie’s bravery both in trying to save her mum and — even more difficult — in letting her mum go.

I wrote back to Debbie about how sorry I was, not only about what happened to her Mum, but also that she had to do all this by herself. Writing to me was the first time Debbie had shared her story and, although I reassured her, she was still — 2 years later — worrying that the ribs she had broken had contributed to her Mum’s death (they hadnt).

Maybe the biggest lesson, though, is that talking about all of this earlier could have helped. It may not have prevented the collapse, but it could have prevented the CPR, and all the medical interventions that happened.

Even more importantly, it might have given Debbie time to say “the words I’d always wanted to say”.

The big practical distinction to make is between cardiac arrests when the heart stops first, and natural dying. These are quite different things. Dr Dan Beckett has explained how cardiac arrests may (may!) have a reversible cause, while natural dying doesn’t.

In a cardiac arrest, the heart stops first. Quite often this follows a heart attack and problems with electricity in the heart. Defibrillation may sometimes be able to restart the heart.

In a natural death, the heart tends to stop last, as part of the natural process of dying. CPR is likely to be futile because the body is dying. It may even be harmful since it leads to an undignified death, and may prolong the dying process.

 

Debbies story remembers Debbie’s Mum. And it’s in honour of Debbie, who has told me: “If anyone else can benefit or learn from my story, at least something positive will come out of it”.

Cardiac arrest and natural dying

Dan Beckett_talking about natural dying on BBC Radio Scotland. Cradle to Grave

Natural dying and cardiac arrests are quite different things. Dr Dan Beckett has explained how cardiac arrests may (may!) have a reversible cause, while natural dying doesn’t.

In a cardiac arrest, the heart stops first. Quite often this follows a heart attack and problems with electricity in the heart. Defibrillation may sometimes be able to restart the heart.

In a natural death, the heart tends to stop last, as part of the natural process of dying. CPR is likely to be futile because the body is dying. It may even be harmful since it leads to an undignified death, and may prolong the dying process.

Read more…

Are you going to have a natural death? Or be subjected to CPR?

When the time comes, very many people want a peaceful death. Even so, there’s always lots more discussion and planning about cardiopulmonary resuscitation (CPR).

Several studies have shown that patients – prudent as they usually are – change their resuscitation preferences depending on what outcome they expect.

But patients and staff have unrealistic expectations about CPR survival. Patients are wildly ambitious. And I was surprised to discover that some staff are unrealistically negative. How can anyone make decisions about resuscitation status, if they have the wrong idea about survival rates after CPR?

So is it ever possible to predict CPR survival rates for an individual?

Stepping right back, there is a fundamental difference between CPR for people who are generally well, but have a cardiac problem: we should be doing MORE CPR for them. Then there’s CPR when someone is in the final stages of a chronic medical condition. For those individuals, their hearts are bound to eventually stop beating as what the Resuscitation Council describes as an “integral part of the natural process of dying”. I think we should be attempting LESS undignified and unsuccessful CPR for them.

To try to help with individual predictions, I carried out a literature review to consider CPR survival rates in terminally and chronically ill patients. I specially focused on high burden clinical conditions. The potential effects of patient age and functional status were also considered. With the increasing focus on home deaths, I concentrated on Out of Hospital Cardiac Arrests.

Some of my results are published in the June 2016 edition of Palliative Medicine: vol. 30 no. 6 Abstract number: PO183

But to summarise – and comment – here:

The first thing I found was how little evidence there is. Although death after chronic illness is something that will affect the vast majority of us, many more researchers concentrate on CPR for the acute-cardiac patients, and how to increase survival for them. Rather than natural deaths.

Part of the problem is methodological. Importantly, more of the sicker patients have Do Not Attempt CPR orders – so they are taken out of the numbers. This artificially increases CPR survival rates for those left in any studies.

Even so, there is a decrease in CPR survival with increasing patient age. This is not linear – there seems to be an especial dip after age 70. All the researchers –  and me too! – are not here saying that some older patients are not successfully resuscitated, just sharing some of the information.

CPR survival rates are especially low for patients with advanced cancer, or advanced liver disease, or with dementia.

Most patients have more than one thing wrong with them. Even so, there is an especial lack of studies for patients with multi-morbidity. Some morbidities are almost ‘positive’ – for example, those who have the cardiac conditions which produce ‘shockable’ rhythms with cardiac arrest have better (if still very low) survival.

Most importantly, the biggest practical – and methodological – problem is that everything keeps on changing. As patients get older and sicker, CPR survival rates decrease. We’re back to the fundamental point that everyone’s heart – including mine, including yours – is going to stop sometime.

I think it would be helpful to be more explicit about this. And to be more explicit that, when a heart stops for someone who has a terminal, chronic disease then often it’s the body’s way of saying that it’s time to die. Although doctors can sometimes make miracles happen then often, even if a heart is restarted beating, patients often die shortly afterwards, in pain (from all the broken ribs)

The other big thing I think we should do is to start collecting different sorts of data. Routine data sources define ‘success’  in terms of getting the heart beating again (return of spontaneous circulation: ROSC); survival to hospital discharge (SHD); or longer term survival. But what about those who had an unsuccessful CPR? Those who died shortly afterwards? And those who chose to have a DNACPR order? We especially need more information about natural deaths.  But we don’t ever collect data about this.

I think we need to start collecting information on good deaths, so that more of us can have them!

 

[I’ve included some links here – there are lots more relevant studies, and if anyone wants to discuss these, please don’t hesitate to contact me!]