VIEW editor Brian Pelan talks to Dr BJ Miller – a leading palliative care specialist who works in the United States
My interview with Dr BJ Miller took place on Skype – not my favourite choice to do an interview as I always prefer actual face to face engagements, but at the end of our 30-minute chat, I felt, in a way, that I knew him.
He was warm, engaging, thoughtful and humorous – even though the main thrust of our conversation was about dying and death.
When Miller was aged 19, a Princeton student at the time, he decided to climb a commuter train near his campus. “Just out on the town horsing around, doing nothing particularly crazy,” he said. “We had done crazier things.” This time, though, was different. Miller was electrocuted when electricity from the overhead wires jumped to his wristwatch. The electrical burns were so severe that he ended up losing three of his limbs. It was that near-fatal accident that drove him to go into medicine and, ultimately, palliative care, working often with terminally ill patients. Now, nearly 30 years later, he’s co-written (with Shoshana Berger) a book called A Beginner’s Guide to the End: How to live life and face death.
How do we face the fact that we will die some day, I asked him.
“It’s a big question,” he replied. “Old Testament – we ate from the tree of knowledge, we have to know we die. We all struggle with it. How do you try to learn to love life all the while knowing it’s going to go. It’s a real trick, but I’ve come to appreciate it just because I can’t change that fact. I think our lifelong task is actually to not run away from it but lean into it.
“Everyone who I’ve ever met who does lean into it finds that their life actually gets richer. They understand how precious time is and that there is meaning to the choices they make because there is not unlimited time.
“I can’t mandate that we all have some beautiful death – I can’t mandate good dying. We don’t need to be so bad about talking about it. We don’t need to be so bad about appreciating each other and the time we have together. Those are all things you can do and get creative about.”
We then turned to the subject of grief. In a previous talk given by him, he had said that “grief is ‘good’ – a way to reach back and connect with the people that you no longer see.” I asked him to elaborate on what he meant by this.
“It’s not that grief is fun,” replied Miller. “It can be extremely unpleasant. I just mean that the source of grief is the same thing as the source of love.
You can’t really give one without the other. You grieve for the ones you lost because you loved them.”
I then asked him do we need to rethink and redesign our approach to palliative care. And if so, what ideas would he have in mind?
“I break this down to four basic pillars that would help us change,” said Miller. One of them is the policy front, such as medical costs. It’s the single biggest cause of bankruptcy in the US.
“Second would be social issues. How do we as fellow human beings interact with each other around this subject?
“The third issue is training and education. The last thing is infrastructure, but also more about bricks and mortar. A lot of people say they want to die at home but when it comes down to it they either don’t have a home or they do and it’s not tenable.”
I asked him what he thinks about the pressures that families or friends face if someone wants to die at home? Is a hospice a better choice?
“I think there’s a need for both. I wouldn’t say it’s one or the other. I think dying at home can be a very powerful thing and a ton of work. If you’re not careful, all this beautiful wonderful potential home can become a blur of busyness and chaos and trauma. I think what we need to do is offer realistic choices. Some of us are going to die in hospitals, some of us will die in nursing homes, but I do think we need to build more hospice homes – environments that are designed for a life to close.”
I asked him about his reference to “sensuous gratification” as part of a palliative care approach? You have given examples in the past of the woman who wanted to smoke her favourite French cigarettes at the end of her life and the patient who wanted their dog in their hospice room so that they could feel it lying on their feet at the end of the bed.
“If our mandate in palliative care is to mitigate suffering and maximise meaning or maximise quality of life, well part of that is symptom management and minimising pain. Some of that is good communication with the family. Those are just a few of the rudiments. What I ask myself is what makes my day? What makes my life worth living? What makes the day interesting or of value? And it might come down to a meal or time with my animals or a bike ride. What do these things have in common? I realised that they’re all aesthetic.”
Should sensuous gratification be an integral part of a palliative approach?
“I think so. I think it gets tricky with how do you language it. Because you start talking about aesthetics and I don’t know if people know what that means. I don’t know exactly how to integrate that into palliative care training, but if you ask me, yes, it’s right up there with symptom management and family dynamics. I do believe it should be a fundamental part of our work.”
I would have loved to have continued our chat, perhaps over a few cold beers. Dr BJ Miller has the art of communicating about the most difficult of subjects – the end of our lives.