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…

Death plans and the law

Cartoon with a bedside family telling a doctor they havent discussed resuscitation preferences

The idea of ‘death plans’ may seem less commonplace than the birth plans produced in so many pregnancies. But at least some aspects of death plans can be legally binding. As always with anything legal, the devil in the detail. And the wording can feel confusing.

I’m shortly going to meet a midwife and I know we will talk about birth plans. Here, then, is a version of something I wrote for Pulse.

Lawyers and doctors don’t talk about death plans – but ‘advance directives’. Advance directives include Advance Statements and Advance Decisions.

Advance Statements are not legally binding, but should always be considered by medical staff

In contrast, Advance Decisions to refuse treatment are legally binding and MUST be followed by medical staff, IF they are valid and applicable. As discussed below, that’s a big IF.

If an Advance Decision refers to potentially life-sustaining treatment, it must must be witnessed, signed and dated.

The details are the big thing here:

  • If the patient didn’t fully understand the consequences of their decision, the clinicians caring for them might conclude the Advance Decision is not valid. There’s lots of room for condescension here!
  • If the patient did or said anything that contradicts the Advance Decision, it might not be considered valid. For example, a patient might have said they wanted comfort measures, rather than trying for a cure, but then accepted antibiotics for a urine infection. This would probably help with symptoms (comfort), but is it really aiming at a cure?
  • If the patient did not anticipate this exact clinical situation within this illness trajectory (how fast or slow the person is getting sick / well) the clinicians might decide the Advance Decision is not applicable. This is another get-out situation: who can anticipate everything?

Advance Decisions are probably most useful for refusing specific interventions like CPR or ventilation and so-called ‘life support’ machines. (I’ve written ‘so-called’ here, as sometimes – just sometimes – all the machines don’t actually support life, but just drag out deaths.)

Even if all the details above are OK, it’s important that Advance Decisions are kept up to date. It’s a good idea to review, re-sign and re-date them whenever clinical and other circumstances change, or every two years if everything is stable. This is so that the doctors treating the patient can be confident that they are following their current wishes.

If you want to set up an Advance Decision, the free My Decisions website https://mydecisions.org.uk will take you through some questions and scenarios to get you thinking about what’s important to you. At the end it will generate a legal document.

A lasting power of attorney (LPA) can be set up by an individual (the ‘donor’) to give an agreed Attorney the legal power to make decisions on behalf of that ‘donor’.

LPA can apply to property and financial affairs; or to health and welfare; or both, if both are set up:

  • In an LPA for health and welfare, a person must specify whether their attorney can make decisions about life-sustaining treatment on their behalf.
  • LPA for health and welfare only come into effect when the patient no longer has capacity to make their own decisions, while financial LPA can start whenever the ‘donor’ chooses.
  • For LPA, there needs to have been full discussion between a patient and their attorney, to truly know what the patient would want.

More details about LPA, including about the £110 fee (unless the donor is on certain benefits or earns less than £12000 a year) is at https://www.gov.uk/power-of-attorney/

Advance Statements are general statements about anything that is important to someone in relation to their future treatment and wellbeing.

They are sometimes called a Statement of Wishes, and are really more Life Plans than Death Plans. They can be used to detail any values or beliefs that inform your decisions or to express preferences for care (for example, hospital or home, male or female carers, specific religious preferences, shower or bath, Aunt Jemima or no Aunt Jemima .. down to Marmite or no Marmite). They are used only when you cant speak for yourself. If you have what’s called ‘capacity’ — the ability to make and communicate decisions — your expressed wishes come first.

None of these instruments gives anyone the right to demand any specific treatments.

Any individual with capacity can set up any or all of these methods of advance care planning. You can have an Advance Directive to refuse something, and an Advance Statement to say you would (or wouldn’t) like something else.

With all these imponderables, for all these ‘instruments’, the discussions may often be even more important than any individual document.

That’s especially true if the process and results are written down. Even if they are initially difficult, explicit discussions mean that families and loved ones know what a patient wants. This is often not what others think, even with close and loving relationships. For example, I have LPA for my mum, and although she said she was sure I knew her well, when I insisted on a discussion, I was really surprised by some of the things she said she didn’t want! These discussions can be much more about Life Plans than Death Plans.

People’s circumstances vary. However, the Alzheimers Society suggest that individuals and families consider LPA after a dementia diagnosis, and to do sooner whilst the person has capacity. This is something GPs can also encourage.

Want help? Online or downloadable Advance Decision and also Advance Statement forms and guidance are here, and there is a freephone information line at 0800 999 2434.

 

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!]