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”.

Eggy miracles. Or: Three things to consider near the end of life

By Eggy Miracles, I mean: Keep on living! Scroll down for more on this.

Here’s my top three things for individuals and families to consider doing when someone is near the end of life.

  1. Keep on living. If you don’t like Eggy Miracles, this can mean whatever else you do like doing!
  2. Get the super-important-practical things done in plenty of time
  3. Talk, talk, talk

Read more…

Medical decision making is better the PATH way

I was really excited when I read about Canadian ideas about the PATH style of decision making. Palliative And Therapeutic Harmonisation looks at older people with multiple conditions in a totally different way than the current ‘cult of cure’ approach. It’s less about keeping on ‘battling’, and more about quality of life and care at home.

Then I found four videos which go through the whole PATH to better decision making. In case you don’t have time to watch them all (and do please try to make time!), then here’s my summary.

Read more…

Bad news? Focus on the person

Heres an example of someone who knows how to focus on the person. Social worker with a SAGE client. Image from bwhheartandscience

If we focus on the person, rather than their diagnosis or any specific intervention, this can turn the idea of ‘bad news conversations’ (almost!) upside down.

When so many doctors find talking about bad news so difficult, just saying that we need to be more open doesn’t really help. Especially when many patients and their families simply collude in avoiding talking about bad news.

There’s a big worry that being explicit ‘removes hope’ and so just upsets patient and their families.

So Ariadne Labs asked “Why don’t these [bad news] conversations happen?” and “What can we do to make sure they do?” They identified the things that get in the way. Based on this, they created a systematic, multistep intervention, called SAGE. This even includes practice for the doctors with trained actors standing in as patients.

Usually doctors ask about treatment options: Do you want this?  Or do you want that? Ariadne’s very different approach has a strong focus on the person. It starts with asking patients if it’s OK to ask. This is like the ‘I’ for ‘invitation’ in the SPIKES model I already discussed.

It underlines that while we can hope for the best, we should prepare for the worst.

And is also clear that (because they do all this early!) no decisions are necessary today. The specific questions start with asking and listening. Always, the key is to focus on the person. They ask:

What is your understanding now of where you are with your illness?

Of course, anyone using this method should look through the whole thing. But I wanted to pick out some great questions that follow on from here (even if they are perhaps in American med-speak). With each of them there is a focus on the person:

  • If your health situation worsens, what are your most important goals?

  • What are your biggest fears and worries about the future with your health?

  • What abilities are so critical to your life that you can’t imagine living without them?

  • If you become sicker, how much are you willing to go through for the possibility of gaining more time?

Reaching an understanding about these sorts of things helps doctors to properly understand what patients might want in the uncertain, ever-shifting times ahead.

SAGE launched their program in primary care, because they “guessed that doctors’ long-term and trusting relationships with their patients would ease these conversations.” Following the training, almost three quarters of more than 200 primary care patients identified with serious and complex illness had useful and detailed conversations.

But Ariadne discovered early on that primary care missed out on a lot of people. A review of more than 350 deaths found that half of the most complex of these had been “cycling between the hospital, nursing homes and other care facilities” rather than being seen in primary care. So they decided to look at hospital conversations as well. They recognised that they needed to design a program specifically for inpatient clinicians – the doctors and nurses who manage patients once they arrive at the hospital.

The challenge was that “traditionally, end-of-life conversations within hospitals focus on medical procedures rather than more nuanced discussions about the patients’ goals and wishes.”

Hospital staff needed help “not only in identifying patients with whom they should have these challenging conversations, but in the specifics of the conversation itself. They also needed support to ensure rapid follow up with patients, families and primary care teams after the patient left the hospital.” The SAGE Programme arranged for social workers to share the information from the hospital discussions with primary and community care staff. And to act as a steady contact after discharge. This all allowed the clinicians to focus on the person.

A pilot study found that 100% of patient in the SAGE programme had detailed and clearly documented conversations about goals and priorities compared with just 40% of patients in the usual care group. Other positive data has been presented at scientific conferences.

Perhaps most importantly “having the conversation lowered patients’ anxiety, and patients reported that their hopefulness remained steady, while their sense of control over medical decisions increased.”

The fuller report of this work includes a story about “a patient we’ll call Evelyn”. This elegant 81-year-old lady had advanced dementia, so had been in hospital four times in eight months. “Before Evelyn started with the SAGE program, her devoted daughter had advocated for any treatment that might keep her mother alive longer. After careful discussions between Evelyn’s clinicians and the family that focused on Evelyn’s personality, sources of enjoyment, and known life priorities, as well as the trajectory of her illness, the family shifted the goals of her care from quantity of life to quality. Evelyn was content and comfortable in her final months, spending time with family, listening to music, and eating foods she enjoyed, rather than returning to the unfamiliar and restrictive environment of the hospital. Her daughter later reflected on the pivotal role of these discussions in helping to plan better for what lay ahead – in order to honour the things that were most important to Evelyn in her final months.”

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.