2 Sep 2019

Advice on living and dying from a palliative care doctor

From Afternoons with Jesse Mulligan, 3:08 pm on 2 September 2019

After a horrific accident left BJ Miller a triple amputee, the devotion and care he received from specialists got the teenager interested in medicine.

Now a palliative care and hospice doctor, Miller's patients have taught him a lot about how to live well and how to die well.

He's co-written the book A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death to share some compassionate advice on everything from organising a will to talking openly about funerals with friends and family.

BJ Miller

BJ Miller Photo: Todd Hido

Miller faced death himself on a night out with friends when he was 19.

The group found a parked train at the edge of their university campus and climbed up a ladder to get on the roof.

“The powerlines run overhead and so when I stood up, I got close enough to the powerline and I had a metal watch on and the electricity arched to my watch, and so it entered my body through my left arm and blew out down and up my leg. So that all ended up in amputation of both legs below the knee and my left arm below the elbow.”

Miller's disability taught him a lot about compassion and empathy. 

“In palliative medicine we completely embrace the subjective sense of things, the personalised sense of things. And instead of looking at someone who’s hurt and trying to fix them, we try to work with that pain … we don’t try to make them something that they’re not.

“Having become a disabled person, I was very attuned to that. There’s something about when someone approaches you with the idea they’re going to fix you, almost like a missionary, there’s some offence in that.”

There’s a spectrum of compassionate responses that people can respond with towards palliative care patients – from pity to sympathy or empathy, Miller says.

“In empathy, you dare to feel what another person is feeling, it’s daring and it’s beautiful. And for the person’s who’s in trouble, that another human being would dare to be with you at your most wretched moment is glorious and is so healing in contrast to pity.”

Miller often listens to his dying patients talk about their fears and regrets. While there are emerging themes, these are entirely subjective, he says.

“A lot of the regrets that pop up have to do with taking grudges to their deathbed, not reconciling, not taking the time to say ‘I love you’ to that person or ‘I’m so sorry’, or whatever it may be, not tidying up a life, choosing the expectations of others over what your heart is telling you to do, that kind of thing.

“Wilful abdication of yourself becomes just sort of plain silly when you’re about to die and you realise hey, I was only myself for so long, why didn’t I delight in that, why didn’t I be it?”

Some patients feel pressure to make a grand gesture to their loved ones as the end approaches, but that’s not necessary, Miller says.

That time is for reminiscing and enjoying the small things we often take for granted in life.

“For me, and a lot of patients I cared for, it’s feeling the sun on your skin or breeze on your face, or touch, just a simple touch, these very elemental, rudimentary, basic physical material things.”

Dying patients can make the process easier for their loved ones, he says.

“There’s two ways to think about it – one is practically speaking. Just families having to comb through a bunch of your stuff after you’re gone, figure out what was important to you, what they want, what they shouldn’t sell, what they should sell, how to do it, these go on for months and even years and it can be a real drag.

“Then there’s this emotional mess, too. Come to the truth before you go, dare to live that truth with the people you love even if it’s a hard truth, dare to say 'I love you', dare to say 'I’m sorry', dare to say 'thank you'.

“These are basic things that you can set your family or loved ones for a much cleaner experience of grief – where they’re left to just miss you and love you, not to feel guilty, not to be guilty – and that’s a wonderful gift to leave behind.”

Families who have loved ones in palliative care can struggle with decisions and grief time and again. And no matter how hard you try to avoid it, grief will find its way into your subconscious like a storm if you don’t take it in, Dr Miller says.

“I would recommend you surf it like you would with a wave rather than fight it because it will have its way with you. The way I think that I get to that and a lot of people I work with is to make this association between grief and love, so that grief is not such an obnoxious feeling.

“You only grieve things because you love them, and that realisation is really potent because grief can have you feeling just horrible and out of sorts … There’s nothing wrong with you, you just dared to love someone or something that you knew someday was going to need to go away, there’s a power, there’s a strength in that, in daring to grieve, it’s the same thing as daring to love.”

Dying can come as a shock to many people, not just palliative care patients, and Dr Miller’s advice is that we should learn to come to terms with all aspects of our nature as humans.

“There’s a time for fighting, there’s a time for pushing back and of course we are wired to this, too – hormonally, we have a fight, flight or freeze response to anything that threatens our existence … but that needs to be tempered over time because the reality remains that 100 percent of us still do die.

“And if we’re not careful, if we don’t invite the subject into our lives early enough to give it some thought well then we’re much more gripped by fear than we need to be, and we’ll end up on our deathbed filled with regrets because we never took our time seriously.”

Those with untreatable diseases or illnesses may hear that their case is hopeless, but Miller says there is always hope.

“Maybe cure is off the table but you’re still here [but] you still get to hope for things. It’s really a matter of reframing that hope … When I talk to patients who are losing hope, because their cancer or whatever else is no longer treatable, our work in palliative care with them is to say, okay, well what can we still hope for?

“That gives us a reason to keep getting out of bed, to keep trying, it’s a compelling force to live until you actually die … You don’t ever have to lose hope.”

Get the RNZ app

for easy access to all your favourite programmes

Subscribe to Afternoons with Jesse Mulligan

Podcast (MP3) Oggcast (Vorbis)