My grandmother; what happens without anticipatory care planning.

My grandmother was called Susannah Margaret Helena Mence Davies (nee Bird). She was very small and very elegant. I can remember her doing magic tricks with her pastel shaded Sobranie Cocktail cigarettes, her long fingernails, her colourful and unique dresses. She was also a fine artist, and an instinctive garden designer.

When I was a medical student, she developed one of those mysterious auto-immune diseases that could only be treated with high doses of steroids, and she started to shrink and shuffle.

When I was a junior doctor, she died, and it was terrible. I was a first year SHO, and while I knew the theory of what happened with a perforated bowel, the reality was and still is difficult to accept. She had started to bleed, with abdominal pain, at a social event, and kept a stiff upper lip then and for a few days afterwards, until she collapsed. This was back in the days when omeprazole was a new, specialist drug.

I got a phone call from my mother to explain what had happened, and heard that she had a perforated ulcer that had been three days in the making. I knew how frail she was, and I blurted out that she was likely to die. Although that was a shocking, unfiltered, response, it was in retrospect quite helpful. It allowed my mother and my aunt prepare themselves for what came next.

I drove down from Liverpool to Oxford, to see her. She was pitiful. She was conscious, she was in pain, she was in ITU in one of those gowns that falls open at the back, in a large area where many patients were being cared for, very little privacy. She told me that she wanted to die, that her body had had enough.

I spoke to her consultant, and asked them why? Why was she on renal-dose dopamine? Why was she in ITU? I was too green to take them to task, but I think the team had been wanting to tell me a hopeful tale of ‘everything being done’ when I knew and she knew she just wanted to go, that her illness was probably unsurvivable.

The next day, my aunt intervened, and she was moved to a wee side ward, and my grandfather and my aunt sat with her until she died, with a massive haematemesis.

Wind on all these decades later, and this experience informs me. I know how hard it is, as a relative, to ask the difficult questions of the medical team, how hard it is to say words that are culturally not that acceptable. Are you letting them die, or giving them the grace to go when it is their time. Time has passed; terms like ‘ceiling of care’ ‘ACP’ ‘treatment escalation plan’ were not around.

I’m sure if we’d talked about this seriously as a family, we would have been ready for the difficult conversations, we could have been ready to talk to the consultants, we could have been prepared for the end. Would we have admitted her to hospital? Possibly, but she would never have been in ITU, in pain, indignity and fear. The wait of three days was telling; was she putting off seeking help because she didn’t want to be saved? How frightening not to trust the health professionals to heed your wishes, so that you stay at home in pain, trying to conceal the beginnings of your end.

This still happens, and I want it to stop.

We should be having conversations in our families. We shouldn’t force our relatives to second-guess our wishes, when the stakes are high. We should have a plan, some realistic principles to guide us through the difficult last days. We should not be trying to resist the inevitable, raising unrealistic hopes for what might happen.

This also goes hand in hand with sorting out Power of Attorney, designating someone you trust to speak and intercede on your behalf when you are unable to do so. Don’t forget to tell them your wishes while you are still able. Look after your future self while you are still able.

For examples of anticipatory and advance care planning, here are some links:

A Hebridean approach to Treatment Escalation Plans

‘I don’t want to be flown away. Can’t you look after me here?’ A frail elderly voice tries to start the hardest conversation in their lifetime. 

I work on a small Hebridean Island, and our practice covers our local community hospital. We have the extraordinary privilege of looking after our patients after they have been admitted to hospital. In many instances, we know our in-patients extremely well, their families and social networks, their occupation and their background.

We also have a very elderly population. In the last decade, the number of patients registered with our practice over the age of 90 has gone from one or two, to ten or twelve. More than a quarter of our population is over 65, and many have grown up with a much more paternalistic style of medicine, and live in hope that we will make the right decisions for them. 

For many, the first conversation about relevent and realistic goals is in crisis, at the bedside, in the community hospital. Most of us trundle through life, talking about shopping lists and the weather, keeping our fingers crossed that today, at least, no big decisions will be required. When the day arrives, the language and concepts are rudimentary for talking about life and death decisions. 

But for many Hebrideans, dying ‘off-island’ is the big fear. Away from relatives, from the gossip and visits of neighbours, away from the priest or minister, away from the Gaelic, and the comfort of being looked after by clinical staff who know just about everyone. Being transported home in a coffin on the ferry, and the relatives grieving at home without the remains to revere. 

So our discussion about transfer away becomes a discussion about many things. We can talk about the benefits of being in a big hospital with consultants and large radiology departments, whether knowing exactly what is wrong is going to be helpful. The community hospital can offer iv fluids, oxygen, antibiotics, time and care, which might be enough. We can talk about which clinical interventions might be useful. We can talk about the likelihood of dying, teh acceptance of risk, of using well-honed clinical acumen to guide treatment, and we can talk about what patients really want from their admission. 

On our Hebridean Treatment Escalation Plan, we have transfer at the top of the list, with all that it implies, with further investigation and intervention, leading the way for discussions about what goals the patient has for their clinical care. These are precious conversations between people who trust and know each other well. These are hard conversations, where neither patient nor clinician finds it easy to start talking about death as a possible outcome. These are the most important conversations that I have. 

So I answer: ‘No, we don’t have to fly you away, but we should talk about this.’