When death is near: a survival guide for next of kin

The clichés abound – every death is different, there is no universal way to grieve, make sure to self-care in the final days of a loved one.

Like all clichés, each contains a kernel of truth – but each, too, covers difficult reality with a balm of familiarity. They do little to prepare you for the complicated, buffeting, all-consuming reality of tending to a loved one as they pass.

My mother just died. The primary cause was bowel cancer. The secondary causes: chronic lung disease, anaemia, age, and frailty.

The mechanism was starvation. From the arbitrary point of her last attendance at the hospital emergency department to her last breath in the hospice, it took 10 days.

No matter that it was unavoidable and she had long since stopped feeling hunger, watching someone close to you starve to death is brutal.

“This is just cruel,” she said once, early in the process, in a ward bed, waiting for a room in the hospice to become available. “It seems pointless.”

No one was being cruel to her – quite the reverse – but she was right. It was an awful thing for her to endure and, yes, utterly pointless. The days between the hospital surgical team concluding (at 4am, in the emergency department) that she was “experiencing a life-ending event” and the moment she died constituted just left-over time, devoid of mission, agency, hope or happiness.

Sitting next to her bed, watching her live it, keeping her company in her final days, seemed like an act of basic human decency. It felt essential – the bare minimum of compassion.

But listen – and here is another cliché – it wasn’t easy.

A quick tip. Love alone is not enough to get you through this sort of experience. Whatever you fear or feel during those long final days, you can never forget that none of it is about you. Your grief must be silent, secondary and secret – at least while you are in the room. So you’re going to need more than just love. You’re going to have to call on obligation, duty, tradition, determination, and stubbornness. You’re going to have to lean on those close to you and hope they can take the weight.

You’re going to have to trust that altogether it amounts to just enough to let you be there – right there for hours and days on end – for the person who is dying.

It’s true that no two deaths are the same, but here, for what it’s worth, are some hard-won survival tips.

Learn to memorise illnesses and medication lists. In all likelihood the final days will be marked by an escalating series of transfers – from residence to emergency department to ward to hospice. These will be accompanied by multiple conversations: with paramedics, emergency department clerical staff, nurses and doctors; with radiologists and pathologists; with ward nurses, consulting physicians; with the palliative care team and the hospice team.

Many of them will ask the same questions. They will want to know the person’s medical conditions and history, and they will want to know what medications are being administered.

All of this is written down in the records, of course – but very often these arrive after the patient. You can make the process easier for all involved if you can calmly and clearly convey the details, enabling a head-start on all-important pain management.

Gently advocate. All nurses and doctors are caring and compassionate, but most are overworked and time poor. A very important reason to sit with your loved one is to be able to monitor their wellbeing in real time. You will see if they become distressed, if they need to go to the toilet, or if they experience pain.

When this happens you can then find a nurse and tell them – quietly, gently, and respectfully. Minimising time spent in discomfort is the common aim of everyone in the final days – and if you can shorten the period between the onset of distress and its resolution, even by half an hour, that’s a good thing.

Grieve as you go. Of course you will grieve after the death, but the days or weeks before that will batter you and hurt you and absolutely overwhelm you. Make no mistake: this experience will totally dominate your life and thoughts – whether or not you are in the company of the dying person, and whether or not you are awake or asleep.

Grief and feelings of helplessness will come at you suddenly and in waves. My advice is to let them, where and when you can, away from your person. Weep in the ward visitors’ toilet, cry gently in the hospital cafeteria, go for a walk and howl in the parking spaces behind an empty building. Holding it in isn’t brave. Holding it in is self-harm.

Prepare an advanced care directive. These are documents in which a person outlines what they wish to happen in the final days. Usually, they record whether the person wants life sustained at any cost, or if they would prefer to go quietly with no more intervention than pain management.

In the absence of instructions to the contrary, medical staff are obligated to do everything possible to preserve life – including aggressive resuscitation and intubation. If your loved one doesn’t want this, it is very important to have those wishes recorded.

If the person doesn’t already have an advanced care directive in place at the time they discover the last days or weeks have arrived, you can help them set one up. Be prepared, though: it will not be an easy conversation, not least because it requires the frank acknowledgement that death will be soon and miracles will play no role.

Say thank you. As the final days play out, your person will be seen by dozens of people – doctors, nurses, specialists, orderlies, pastoral care workers, consultants, volunteers, caterers, even masseuses. Each and every one of them will do their level best to make the journey to death as gentle and comfortable as possible. You quickly come to realise that while you are doing this for someone you know, they are doing it for a stranger.

Your gratitude to them may overwhelm, and risk rendering you speechless, but it’s important to thank them and thank them often.

(Be aware, though, that thanking so many so frequently is in itself an exhausting task. When it is all over and your own recovery begins, you might, like me, take a guilty pleasure in going whole days without thanking anyone at all.)

Discuss voluntary assisted dying. If your loved one wants to go on their own terms, voluntary assisted dying, or VAD, might be of use. Be aware, however, that in Victoria palliative care nurses and doctors are not legally allowed to raise the subject. The dying person has to initiate that discussion.

And then be aware that the process is a nightmare – highly regulated, time-consuming, and demanding frankly absurd amounts of pettifogging detail. A personal story: my mother wanted to die through the scheme, but would likely not have been approved because we were unable to locate the passport containing her entry visa to Australia, which would have proven her a permanent resident. She arrived in 1968.

In the end, though, the point was moot. She passed away well before even the most optimistic estimate of VAD timelines.

My mother died at 11:06pm on a Sunday night. I had been back at home just three hours, having left her asleep after being by her side since 7am.

The wonderful staff at the hospice called to say her breathing had suddenly changed and she had entered the final active stage of dying. It would likely be just a couple of hours now, they said.

My wife and I jumped in the car and reached the hospice in 30 minutes. Her last breath had been just a minute before we entered her room.

A nurse was holding her hand. “I told her you were on your way,” she said, with a gentle smile.

“Thank you,” I replied, and cried for her immeasurable kindness.