Quality Over Quantity
Palliation and Caring for the Dying
I have spent time as part of a palliative care service in a big hospital in Perth for the last few weeks. Considering how it has affected me I thought it would be interesting to reflect and write about it and hopefully you get something out of it along the way.
When you read the word “palliative” it is reflexive to hear the word “dead” or “dying” in your mind. This is almost exactly opposite to reality. A patient “being palliative” implies the existence of a person, with a family, with needs, with hopes, with children, and with issues. In fact, palliative patients are some of the most vulnerable people in our community and are the ones most in need of compassion. The role of a palliative care service is to alleviate the suffering of the ill and focus on quality of life in patients who have severe disease with little hope of getting well.
Sometimes this means helping the patient to get home and other times it means organising psychosocial support for their family members. The work of the palliative care service touches the souls of many, not just one. One key difference between Palliative Care and other specialties is the emphasis on communication. Communication is to a Palliative Care Specialist what suturing is to a surgeon. It’s their bread and butter and they can do it in so many subtly different ways and in different scenarios. You might think I’m exaggerating, as people who know me personally know I often do, but I’ll elaborate. Imagine you’re the doctor of a dying man, his two children are fighting over his estate and separately approaching you demanding that you allow him to hand over Power of Attorney. How do you navigate this delicately? What if the patient isn’t of sound mind? How would you check that? What about if a woman is dying, with no hope for improvement, and highly invasive treatments like CPR or surgery are no longer appropriate? How do you tell a loving husband that his wife will no longer get the same care that someone in the room next door will get? The answer is by being delicate, compassionate and patient . By understanding what aspects of this experience are most stressful for the person in front of you and by doing what you can to fix those things. The thing that struck me is that in the midst of all this noise was that the clinicians I observed always maintained laser focus on the person under their care. All decisions were made with the patient, and their wishes and desires, at its centre – even when they weren’t conscious.
“It feels like a metal band is being slowly tightened around my spine while someone hammers a white hot rod into my back at the same time. Like medieval torture.’
Another element of the peace that the Service can provide is the alleviation of pain. To you and me, pain is something that comes, we experience it and then it goes away. It’s often caused by stubbing your toe or falling and hitting your arm. One important aspect about how I experience pain is that psychologically I know I won’t have to endure it for very long. Patients in the Service don’t have this privilege. Their cause of pain is inescapable, annexing more and more of them as their disease gets worse or their cancer spreads. I can’t really imagine what it feels like to be trapped with this kind of demon. How does it feel to have no power over such a thing? Even when it is gone for the moment, how much stress is caused by the fear of it coming back? The work the service does to give patients distance from this demon is in and of itself some of the most important work that happens in a hospital.
Something that kept popping up in my mind during my time on the unit was that I simply didn’t belong here. What business did I have in a family’s darkest hour? I’m not going to say that after a few weeks I am well equipped to deal with caring for people at the end of their life. However, I did learn a few things that I will take with me to my own. Firstly, what we call life, or the at least the day-to-day aspects of it, is precious. Wow, really dropping some bombshells, aren’t I? When someone lets you into their life at its end, you get to see how badly nature likes to treat us sometimes. And when it is all laid out bare for you to see, you remember all the things that you take for granted. My health, my mind, my loved ones, the roof over my head, the water I drink, everything. Everyday I finished my shift I drove to my parent’s house and hugged them tightly. As a young person I think its normal for us to get caught up in what comes next, but suddenly I profoundly cherished what had already been and what is. I am kind of ashamed it took me an experience like this for me to come to this realisation, but better late than never. My faith in human goodwill and generosity was also affirmed. People can be so generous and loving in positions immeasurably worse than my own. What excuse do I have? In the time since my placement, I find that when I feel angry or frustrated that I recall how courageous and level-headed some of the patients in the Service were, and suddenly I can’t help being grateful for what I have.
 P.S. this isn’t common on other kinds of ward rounds