Granddad died today

Granddad died this morning. Chaotic breaths were replaced by a final gargle. A sprinting pulse was replaced by nothing. Around the bed, we held his hands, head, and legs. We said goodbye and cried. The time was 08:53.

Culturally we put a lot of weight on the time of death. We time death to the hour and minute. Just like birth; a life measured in minutes. We remember his final breath as special, but granddad’s final breaths were like a leaky tap. We talk about him holding on until this time, letting go at that time, but granddad did not fall from a ledge. After the nurse arrives, we begin replacing granddad with the body. But granddad and the body separated over days, weeks, and the slow course of five years of neurological degeneration. Granddad’s death was a process, not an event. The time of death is emotionally difficult, but the time of death is not nearly as important as the process of death.

A couple of hours later, grandma was given an envelope. A certificate recorded granddad’s official cause of death: progressive supranuclear palsy, with the contributing condition of orbital cellulitis. The certificate did not record the more obvious cause of death: dehydration. Since Monday evening, granddad had had no water but for mouth sponges and a heroin solution delivered by syringe driver. It’s Friday today. He survived 84 hours without water. I read that 100 hours is typical for a healthy person. We were never given an estimated time of death, but it seems the hospital could have given one accurate to within a few hours!

During the week, nurses and doctors seemed unaware of the death-by-dehydration process. “Just because someone is taken off their hydration drip, doesn’t mean they’re going to die.” Mum took exhausted, angry glee in quoting the nurse who told her this. A little later in the week, a palliative nurse examined granddad, taking note of his paralysis and his flared, excruciating eye abscess. She advised us, “I’ve seen many patients in his condition, and he could go on like this for a long time.” Not without water, though.

I arrived at the hospital on Monday evening. Granddad was on his last IV saline/glucose drip, permission having been given to cease hydration earlier that day. Later that night, his shots of morphine were replaced by a syringe driver, delivering a low dose of diamorphine. As the week progressed, his diamorphine was increased, increased, increased again. He started receiving shots of midazolam, a sedative. Eventually, the midazolam found its way into the syringe driver. The driver drove for fifteen minutes longer than granddad.

A syringe driver takes a normal syringe, and drives the syringe’s plunger at a constant rate. The plunger is attached to a leadscrew which is driven by a stepper motor. Sitting next to it for its twenty-four hour period of operation, you can hear the stepper motor clicking slowly. Despite their simplicity, NHS syringe drivers come with labels placing their value at a reassuring £1,300. You are in safe hands.

My paternal granddad died in the same hospice ward a few weeks ago. His death was a similar process. I only visited the hospice once, then. Held his hand, then watched him briefly wake, fidget, try but fail to fix his eyes on me, then collapse again. Shortly after, a syringe driver was started, again containing midazolam, attached to him until death.

Midazolam is used as a half-sedative, half-painkiller. Its mechanism is apparently that it stops the formation of memories. You begin to wonder: you can’t form the memory of pain, so you won’t report the pain later, but do you feel the pain? Does this mechanism really qualify as a painkiller? It seems like cheating. What is pain? All we seem to know is that these drugs stopped granddad reporting pain. In hospital, you have two models of your loved one. You hold their hand, and he is the granddad you’ve always known; you hold the syringe driver, and he is a failing machine, with uncountable components you can only vaguely understand. How does the pain module connect to the memory module? Your answer matters, because being wrong results in suffering.

On Wednesday evening, I left the hospital with my sister, to spend the night at dad’s. “I’m just reading about syringe drivers.” Typical dad greeting. As I put the kettle on, we get a reading from an online article, “Sentenced to death on the NHS”, with excerpts of an eight-years-long comments section. Usually, going to dad’s, I’m given readings from flat earth articles, so I didn’t give this too much credence. But the article seems sensible as I read it today.

The article describes the “Liverpool Care Pathway” (LCP), an NHS policy for end-of-life treatment. The removal of water, and the continual delivery of painkillers and sedatives, are apparently part of this pathway. The LCP was mainly criticized for associated financial bonuses given to hospitals, incentivizing them to put patients on the pathway even if not obviously terminally ill. The LCP has been officially discontinued, but similar treatment clearly continues.

Assisted dying is illegal in the UK. This has been the case since at least the 1961 Suicide Act. The main effect of the Suicide Act was to decriminalize suicide, but it also clarified that assisted suicide was a criminal act (if it wasn’t already before). The act’s criminalization of assisted dying was possibly unintentional. I read that the general UK public are in favour of decriminalizing assisted dying, but several attempts at this in parliament have been voted down in parliament. I do not know why parliament is so badly aligned with the public on this issue.

The LCP has a bad reputation. It’s not clear to me that the removal of water is “bad”, or that the constant use of painkillers and sedatives is “bad”, or that the syringe driver is “bad”. But it is fairly clear that this pathway is de facto assisted dying. It allows patients, their guardians, and hospitals to collectively end the patient’s life. Terminal dehydration is a way to skirt the Suicide Act, because we can claim that withholding water is just like withholding treatment. Ramping up painkillers and sedatives is a way to skirt the Suicide Act, because we can claim that the medication helps the patient cope with their death, rather than inducing their death. I think this explains the lack of explanation and guidance by any doctors or nurses: they cannot be seen to be inducing death, only providing care for it.

As a family, we had known for years that granddad was terminally ill. He was diagnosed with PSP, progressive supranuclear palsy, I think around 2013. It’s degenerative, and considered terminal. As a family, we discussed treatments and workarounds for his condition, but mostly avoided the fact that granddad is going to die, sooner or later. Even this week, there was no public acceptance that granddad is going to die, and he’s going to die this week.

Last year, my girlfriend was going through a spreadsheet of things that her grandparents own. Jewellery, paintings, bureaux. “What’s this?”, I ask, and she replies, “I’m going through my grandparents stuff to pick the things I get when they die.” I laughed: what a ridiculous approach to death! I think I laughed because I didn’t know it could be this way: a practical acceptance of death, and methodical preparation for it. Now it seems refreshing. I would like to approach my own death in a similar way.

Here’s how granddad’s death process could have been introduced, if it were acknowledgeable as a form of assisted dying:

People with terminal illnesses in the UK can choose to die by VDD (voluntary death by dehydration). VDD usually takes 3-4 days. With care and medical assistance, people choosing VDD can die controllably and comfortably. The NHS can provide this assistance. Before the VDD process begins, the NHS can assign an the patient a key person who can advise and counsel the patient and their family throughout the process. The NHS can help the patient arrange their wishes after death, such as their will, financial affairs, pre-booking accommodation for the VDD course, and pre-arranging the patient’s funeral. Throughout VDD, the NHS can provide relief from the side-effects of VDD: associated pains can be relieved with painkillers and/or sedatives, and associated dry mouth can be relieved by mouthcare.

Granddad, and his family, did not receive such guidance and arrangement. As a result, the process was more painful for everyone. Granddad’s VDD began on the very same day that it was decided to use VDD. To me, the choice seemed ad hoc, and certainly taken under stress. In granddad’s case, the choice to use VDD could have been made years in advance. The choice of when to use VDD could have been weeks in advance. Because VDD was started only hours after it was chosen, granddad was in an inappropriate ward for the majority of the course. He was in a general-purpose ward for three of the four days, and only in a dedicated hospice room for the last day. The general-purpose ward was stressful to the dying man and his family, and the bed could have been freed for someone else. Because the choice of VDD was late and communication was absent, neither the family nor the staff understood the process. We in the family were left to us to discuss and theorize how granddad’s last days would pan out. Multiple statements from nurses implied that granddad could have lived longer, or much longer, than he did or could. This was needlessly misleading to granddad and to his family. Because planning and understanding was poor, the family (and particularly my mum, granddad’s daughter) had to fight staff to get appropriate treatment throughout the process. I believe a lot of the pain I have seen this week could have been eased by acknowledging dehydration as assisted dying.

Some time after 08:53, the atmosphere was peaceful. It had rained all night, and we wandered in the fresh grounds of the hospice. Later, we visited a pub and raised some glasses to granddad. Goodbye granddad, you were great. 🍻

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