Why talking about the worse case scenario can rob it of its terror.
When I finally sat down with my parents around the dinner table in my childhood home, it was only after we ate - when some after-dinner drinks were comfortably on the table - that I brought up what was on my mind.
“So... at work you know I do a lot about end-of-life care. And the more I learn, the more I realise that it’s important that we talk about what you would both want if something really bad happened, and you weren’t able to tell us.”
There was a brief moment’s silence as my parents looked at each other, before beginning to talk. The conversations that followed were typical of my family: somewhat blunt, quite honest, but always skirting around some of the more deeper issues. The type of unresolved issues that can make end of life decisions often treacherous.
However, after a few drinks, and some fairly frank admissions, the discussion remained just that: a discussion. I felt like I wanted to let them chew on it for a while, so we went back to our normal lives. But I had managed to breach the subject of death with my parents. Yet it was abstract, wishful, and felt like a remote and distant issue.
That was, until my father encountered some health issues. Health issues that convinced him that this wasn’t just a strange topic for dinner conversation, but something that should be carefully considered, and committed to.
Over time, the conversations returned to the topic of planning ahead, and how to practically document those decisions. We began to explore the options around contemporary advance care planning. I soon realised this – despite feeling like a fairly routine process – would reveal itself to be a complicated, ever-changing and somewhat archaic experience, that left me with a sense of unease, but ultimately feeling driven to find a better solution.
On the run up to Christmas last year, my father was buying presents in a shop when he was hit with a sudden wave of nausea and vertigo. He escaped to the store’s staircase to be violently sick. Though a short-lived but unpleasant experience, he was most surprised at the rapidity of his turn. As a fit 68-year old, with a clean health record, it came as a bit of a shock. Subsequent check-ups with the GP and referrals to the hospital revealed the culprit: a heart murmur. This was not a complete surprise to him, as he had been told about it in his early-20s, but had given it no thought for the 40 years since. But he was now approaching 70, with his body carrying the wear and tear of a life well-lived. With further discussions with surgeons, it was agreed he would undergo surgery and have his aortic valve replaced.
The first I knew about it all of this was when he called me up, out of the blue. He quickly picked up our previous conversation from the dinner table:
“Remember when we spoke about what we’d want to plan in advance, in case something happened? Well I think we should sit down and get it organised. I need to go in for surgery.”
My own heart skipped a beat as he told me. I assumed the worst. He quickly established that rather than something immediately life-threatening, this was a routine operation. And in fact, rather than fill him with fear, it seemed to give him purpose to the question of what he would want if it took a turn for the worse. “If it all goes wrong, just switch the machines off.” he had promptly proclaimed those months before, between sips of his drink.
Now, given a definitive time ahead where machines could potentially be involved, his tone soothed. Gone was the stubborn, instant decision making. Something else emerged.
I decided I wanted to build on our earlier conversation to help re-establish some of the boundaries: I knew having a foundation of a conversation was important. I also appreciated how much attitudes and decisions could change according to someone’s changing condition.
I asked him about what he meant about ‘no machines’. “If there’s no hope, then don’t keep me alive” he replied. I knew this essentially was a decision that would fall under the Advance Directive to Refuse Treatment (ADRT or Advance Directive). This was a legally binding document that would explicitly detail which treatments - like a ventilator to help him breathe - he would not want, even if it shortened his life.
This – I was told later by a clinician colleague – was always very helpful to know. It meant we clearly knew his ceiling of care - the red line of treatment he did not want to cross. So what else was there? My parents had established a Will some years before, which had stood the test of time. During our talks, he floated an addition to the will: to include me as an executor. I immediately took the opportunity to shelf the idea. I was the middle of three brothers: how would picking one son over the others, I argued, not raise family conflict in the event of his death? I quickly realised this could not be done over the phone. I called him back a minute later, and told him, “In fact, I’ll come home and go through it with you. I have everything.”
Fortunately, I’m a designer at the Helix Centre, a design studio embedded in a teaching hospital in London. The Helix Centre is a unique design studio where designers sit alongside clinicians to solve healthcare problems and deliver impactful design innovation. I had been spending the last few months discovering, researching and exploring end of life care, as part of a four year funded project. We had already found evidence to suggest that planning ahead was difficult to do for a variety of reasons: the plans themselves were complicated and hard to use, they were hard to amend according to shifting priorities, and the conversations surrounding them were rarely done in time. We felt that there was a great opportunity for design and technology to improve the experience of end-of-life care for patients, families, carers and clinicians, especially in an area that was now startlingly real: advance care planning.
I printed off all the documents, gathered the collection of existing advance care planning options and went back home to Scotland. When I arrived, I knew immediately what I had brought would be useless: My work was based in and around England, but he was in Scotland. The UK regions operate with different health systems, even different legal systems. This was our first bureaucratic hurdle: how to navigate the various British systems, and try and coordinate between the various services.
I immediately realised there was no good way to record his decisions as we talked. Would we go through on the computer, read the PDFs, or print them out? But how would he actually record them, with a pen and paper? Where would he keep these documents? Unlike the Will, the advance care plan is not legally binding and doesn’t have to involve a lawyer, who could keep the document safe.
I knew already from my work at Helix that it can be hard to navigate all the forms that make up a complete Advance Care Plan (ACP): an ADRT, Preferences for care, a Will, Organ donation, Lasting Power of Attorney (or Power of Attorney in Scotland), even a Do Not Attempt Resuscitation (DNAR or DNACPR). These documents all have varying degrees of complexity and legality, and can be hard to change them if something happens, or you change your mind.
Even with a clear set of basic decisions, with my Dad’s full capacity and our continuing conversations, we still hit a barrage of difficult questions: who else in my family knew about this? We talked openly, but would my brothers understand? How would each relationship be affected if the worst happened? Can you even plan for that? How was I sure I was asking the right questions to my father? Was I missing anything? What would his surgeon say? Did we have to convince him of any of these decisions, or would he just agree without question? None of the documents, tools or plans could be personalised to my father’s needs. For something so important, it felt sorely lacking to our specific family conditions.
We nevertheless began the process of answering some basic questions about his care and priorities. Yet we found they grew into deeper unresolvable ones. It was beginning to be obvious: my father was not in immediate danger of losing capacity. The stakes were low, medically speaking. After all, the advance care plan and associated documents are there for when you cannot make the decision about various aspects of your care. The wolf was not at the door, and so we didn’t feel the need to make the hard decisions as we went through the plan. What we lacked in urgency, we made up with time and willingness. But we were let down by the process.
The paper-based, low-fidelity formats and forms represent the antiquated interaction between patient and health provider. They are one-way, slow and rely on appointments and meetings to confirm decisions. Though he can have the plans cleared with his GP and added to his record, it will take time and organisation. We had plenty of this, but what about other people who are faced with limited time? How can these plans be modernised to support them?
Digital health platforms can sometimes represent the panacea of the modern healthcare system. In one way, advance care planning would immediately benefit from the modernisation of an app service or web platform. The forms are complicated, and obtuse in their presentation: a well-designed user interface can easily fix that. Someone creating a digital advance care plan could more easily record their decisions and amend them if need be, a major stumbling block for paper-based plans.
However, in my father’s case – the case many campaigners seek to celebrate – he is making preparations far in advance of a particular scenario. His case is not complex, but it marks the start of a long journey of eventual decline as he ages. The challenge here is creating something that can be edited, stored in a way that is accessible, and maintained over a long period of time. There are currently few digital services that can confidently expect to last the decades that an advance care plan may be expected to be valid for. Companies go bust, data storages get wiped, subscriptions lapse, login details get lost.
Drawing back to the current system we have, I was left unsettled by some fundamental facts of difficult conversations around advance care planning. We were taking the time to have these discussions, but even with cooperative conversations and direct admissions, we would struggle to discuss some details. I realised that no matter the simplicity or transferability, having a conversation about the worst case scenario was really difficult. WIthout knowing the complexity of my father’s future health issues and possible trajectories of his needs, it meant that coming to a conclusion was hard.
It was clear we were benefiting from being educated, middle-class adults. We are used to informing ourselves of our health needs: my father had already taken the time to investigate and attempt to pick his own team of surgeons! “You’re not supposed to be able to do that” said one surgeon colleague. I remain impressed by my dad’s brass neck.
But what about those who have never taken control of their health? Those who are poorer, from a lower socio-economic class, who are more likely destined for a poorer death? What hope do they have of planning their care in advance? One consultant at a London hospice had once told me, “patients a lot of the time, will say: you don't need to tell me, just work it out for me.” The deference to clinical judgment, and a tendency for doctors to exhibit compassionate paternalism means that many people will never believe they have the power to choose their own preferences and priorities.
No manner of technology will change that behaviour, but conversations could help. They can help guide people away from entrenched, passive behaviour, and gently coaxed out what is important, what is significant, empower them to make active decisions about their care.
Nothing can really replace having good quality conversations that happen over a period of time. But using technology to support decision making can make the experience easier. To be able to navigate through the complex web of forms and processes, care planning is desperately in need of more innovative solutions. Solutions to help individuals express their preferences for care in the long term; to assist clinicians in coordinating the care needs of a patient; to help families make the most of their time together.
The discussions with my father were a great bonding experience. We made jokes, spoke seriously about the future, even planned the basics of his funeral. All stemming from a place of comfort and care, at a point early enough for him to take stock and consider what was most important to him now and in the future.