Palliative care is an underrated specialty, probably because it’s not as ‘sexy’ as cardiology or neurosurgery. Still, it can profoundly change the lives of patients and their families. 

Founded as a speciality in the 1960s by Cicely Saunders, the word ‘palliative’ comes from the Latin palliare, which means ‘to put a cloak over someone’ (out of comfort), an image that is often lost in translation as one automatically thinks of death and dying.

After reading the book Being Mortal by Atul Gawande in medical school, I was intrigued. The strange thing is, there was nothing in our curriculum about it. During placement, I would tag along on palliative care ward rounds and when I did, I was stunned by what I discovered.

One day, we met a patient with a Hürthle cell adenoma, a rare thyroid cancer, which had metastasised to the cervical spine, causing intense pain to the base of his skull. The young clean shaven man wearing a Star Wars t-shirt broke down in tears as he confessed how much pain and psychological distress he was suffering.

Instinctively, the consultant kneeled to the ground. The palliative care nurse sat next to the patient and held his hand. Shortly afterwards, every member of the team lowered themselves. I was the only one standing with my back against the wall, awkwardly shuffling into a squat position so as to not be out of place.

Something in the air had changed. The patient felt more calm and by the end of the conversation, which was infused with a timeless stillness, he expressed his relief and gratitude. What was that? Of course, we titrated his dosages and added another analgesia, but there was something there that did not involve the mere mechanics of medicine.

So why aren’t med students taught palliative care throughout their curriculum? Now as an intern doing a rotation in Palliative Care, I notice how underprepared we are in having difficult discussions with grieving families about whether their loved one should be resuscitated or have “breathing tubes” in them or just be allowed the dignity of dying comfortably.

To learn more, I interviewed A/Prof Leeroy Williams, immediate past president of the Australian and New Zealand Society of Palliative Medicine (ANZSPM), and founder of the influential social media platform Palliative Medicine Teaching (PallMedEd). During our talk, which has been edited for length and clarity, we discussed his journey and views on the specialty.  Here is what he had to say:

What is your story and how did you come into palliative care?

The idea of a whole person care was something I heard about and always thought that's how we should treat people. You want to treat people in all those dimensions. I got into my medical rotations in the UK and I was doing radiation oncology at the time. One of my colleagues was doing pall-care training and she said, “You should consider this.”

Most of the patients we saw on the ward had GBM (glioblastoma multiforme) and there was a guy whose daughter was getting married and the palliative care nurse on my ward came up to me and said, "We need to sort this guy's meds out because he wants to walk his daughter down the aisle on the weekend.”

I had no idea that this was something that he had planned to do because we were caught up in the management of his GBM. It brought home to me that if I was holistically minded and I was doing my job and I had no idea about that and it had to be pointed out to me then clearly I wasn't as holistic as I thought I was. So it made me then explore palliative care as a specialty.

What is it about the specialty that stands out compared to other specialties? Was it the holistic aspect?

It just taught me to think more about what I was missing and what I needed to improve on to ensure that I was delivering. I was either delivering holistic care or I was coordinating with the team for that person to ensure that they had holistic care. So there's two elements to it. There's the element of professional development and there's also the element of supporting the team to work together in the best interest of the patient and family.

How do you think the culture of a specialty shapes a person? In turn, how did palliative care shape you?

Physician know thyself

You have to know who you are, how you want to practice. You have to know what you stand for. You have to know about where your flaws are. Everyone's got a dark side of their personality or some deficits they need to work on. So there's personal development, but you cannot help people who are vulnerable unless you have become vulnerable yourself.

Gaining their trust from that therapeutic doctor-patient relationship appeals to me because when people are vulnerable, who do they turn to? You are in charge of looking after them, in that period of vulnerability. You need to be responsible to make sure you're doing the right thing by them. That means you also have to recognise your own cognitive biases as that affects your care.

Patient Advocacy

You have to advocate for a system that actually allows them to be able to tell you who they are and what's important to them. That's where I've come from because I think palliative care does that a lot.

These are two tenants of medicine that really struck a chord in me and I felt that when you start to do palliative care, you realise that you're actually doing holistic care to a much greater depth than perhaps the system allows in other places.

How do you approach patients facing demoralisation or an existential crisis? Is it possible to inspire hope in a dying patient?

You need to understand the person. Have they got a religion? They may not have a religion. How do they deal with uncertainty? Once you've got the diagnosis of a life limiting illness, your next thing is, ‘how much time have I got?’, and you're not talking about prognostication. You've got to try and provide hope alongside information that they want. You are dealing with uncertainty. How do you deal with uncertainty? Give small pieces of information that are more certain and then chunk it down.

How do they deal with the bad times in their life? How was their job? What are the traumas in their lives? The narrative of someone's life gives you an idea of how they deal with the successes and how they deal with the lows in their lives, and it will tell you what's important to them. What's the coping mechanism because that's the source of the existential crisis.

There is an element of giving them hope, but what is the hope for? It might be hoped that their family is well looked after. Often I might say, “Whatever happens, the community palliative care service will be supporting your family after this”. It may be that they want hope to do something before they die. How can we do that?  They may not be able to physically do that. I might say, “I know you want to go home, but how can we help you achieve what you want to achieve? If it's so important before you die, how can we help you do that?” It’s how you frame the conversation.

You have created an influential social media platform to educate people about palliative care. Tell us more about that and what is your aim with the platform?

The idea came about: let's go on social media…let's try and engage in a more extreme fashion with the medical students, because we know that we can support you and help you with death and dying. But we thought, why do we have to limit it to medical students? The population needs to understand. Sometimes we need to change the dialogue around end of life care. So why don't we open it out to everyone? Let's put out content that will make people think about the way healthcare is delivered. Let's make people think about holistic care across the whole of the healthcare system. Let’s make people think about how they can change their mindset.

Gil Scott-Heron [said], ‘the revolution will not be televised’.  What he was talking about was a revolution in people's minds. That will not be televised. What happens up here will not be televised. So a revolutionary movement starts here (in the mind). If we could change everyone's mind states to holistic care in the whole of the healthcare system, how much would the care improve? How much money would we save? How much more engaged would we be with people if we actually treated people holistically?

What is the way forward when it comes to educating patients and families about palliative care?

People are always going to have an aversion to talking about death and dying. It's a cultural taboo. It's about our death anxiety. Sheldon Solomon would argue that when you're thinking about death and dying, it triggers you. Your death anxiety gets more pronounced. You can't exist like that, thinking about every moment could be the time that you die. We need to acknowledge that in society. We have to acknowledge there's a bias [around] this idea that palliative care has been ending people's lives sooner than it should have.

That distinction needs to be made clear now from voluntary assisted dying…because what palliative care has done has been within the realms of what medical practice is. When you give a drug, you bear in mind that this drug has side effects. What we try and do is minimise the side effects…but also this is a person who is deteriorating so you have to manage that very carefully. What happens when people can't take tablets? How are you going to get the medications in to support their pain management or their nausea? You have to then deliver it in a different way.

If you leave them without their pain medication, what's going to happen? If you're fearful of giving someone medication that relieved their pain because you think it's going to end their life, you have to then accept that if you don't give them that medication, they are going to be in pain and they're going to be agitated and some people don't die quietly. So what do we do? Do we not give medication in that instance, because we're fearful that it might hasten their death? We need to give something, otherwise they're going to cause more harm to themselves. So this is the problem where people don't understand what we're doing and they haven't had the education.

It flips over to the health professionals. They don't understand either. Why? Because they only got one day or an average of one week of teaching in their undergraduate curriculum. Of course, if they can refer to someone else that would deal with this, why would you worry about it? But now it's becoming a problem because so many people are getting older, so many people are needing end-of-life care. We don't have enough beds in pall-care units to do it all.

How do we change that? You need to understand that people may not want to talk about it, but talk about it in a positive way that this person has got a limited length of time. What can we do to make that time as meaningful as possible for that person?

If you have been affected by any of the topics raised in this article, please consider contacting 13 11 14 - Lifeline Crisis Support Line'

Further Resources

Leeroy leaves us with a number of resources to gain more insights into palliative care that will make us, as health professionals, think deeper about approaching death and dying holistically.

Websites

1. End of Life Essentials
2. PCC4U (Palliative Care Curriculum For Undergraduates)
3. Palliative Medicine Teaching
4. Palliative Care Australia
5. Australia New Zealand Society of Palliative Medicine

Book Recommendations

1. With the End in Mind – Kathryn Mannix
2. Being Mortal: Medicine and What Matters in the End – Atul Gawande
3. In the Realm of Hungry Ghosts - Gabor Mate
4. Palliative Care Ethics, Philosophy of Palliative Care - Fiona Randall
5. That Good Night – Sunita Puri
6. Social History of Dying – Alan Kellehear
7. 7. When Breath Becomes Air – Paul Kalanithi
8. The Way We Die Now – Seamus O’Mahony
9. The Denial of Death – Ernest Becker

10. Man’s Search for Meaning – Victor Frankl