Reflections from a Palliative Care Dietitian

I do a lot of work with perinatal clients, but huge part of what I do is palliative care. I have been working in palliative and end of life care as a dietitian for almost two years now. When I first started, I found it challenging, engaging, and a paradigm shift from what so much of my schooling had taught me. As the months went on, I found myself in the middle of a slowly unraveling existential crisis. There were a few thoughts that kept returning to me, as I sat with people every day that were dealing with the nearness of death. These thoughts were:

I will die.

Everyone I love will die.

All of us, our brain and body, are very organic and will experience various damage and dysfunction in the course of a lifetime.

What really matters when we understand that we will die?

The ways I had figured out to cope through my (naturally) self-centred early 20’s were brought into question. They didn’t have a response for any of these thoughts. I employed “know thyself” and decided that I needed more information from a different perspective for my analytical self, and started volunteering with hospice. Through volunteering, I was able to develop some understanding to help face these thoughts. The education from counsellors, spiritual teachers, doctors, nurses, and the bereaved loved ones was invaluable in advancing my understanding of my life and my work. Reflecting on this, here are some of the things I found.

I feel less entitled to have good health. To borrow from Steven Novella “We are messy biology. We are just meat that thinks.” There is a persistent pressure in our society to be perfect, or to always be striving for some kind of perfect ideal with clear skin, a bright mind, a taught body, flawless digestion, endless energy, and free of any disease. The truth is there are bumps, flaws, messiness, and discomfort in our bodies and lives that have no solution. Things happen that have no justification, that make no sense. That does not make us any less worthy. That doesn’t make us weak or at fault. Changes in your health might require a process of grief, and that doesn’t make you weak either. We will all experience good and bad health, at different times.

A big part of my job is sitting next to my patients, answering their questions, and being a witness to their grief at each progressive loss. When they can no longer chew or swallow, when they can't taste anymore, they can find themselves facing a reality they never imagined. Releasing all their expectations of how their body "should be" is a very private, individual process.

Releasing our entitlement makes it easier to connect with our sick and dying loved ones. Feeling entitled to good health, as if one day we will “solve” all the pesky problem of our health failing, promotes a denial of death. This passage from the book “I don’t know what to say” really brought home the consequences of these thoughts:

When a person is dying, his friends and family can no longer deny the reality of death. But if they have no previously acknowledged its existence, they will be ill prepared to face it. The denial of death creates a barrier between the dying person and the rest of society; the person facing death seems to have stepped outside the boundaries of our society before he has taken leave of life. He becomes isolated, set apart from his friends by the conventions of society at the very time that he most needs our support
— Dr. Robert Buckman

I take love more seriously. In "All About Love" bell hooks said " Contemplating death has always been a subject that leads me back to love." A doctor I work with us reminds us that all we have at the end is love- we continue to respond to the presence of our loved ones, their voices, their smells, their touch, when we have stopped responding to anything else. A patient I got especially close to shared that she learned more about people and love in the last few weeks of her life than she ever had before. She gently pushed me to think about who I love and how do I express that to them.

I consider “Why not?” more often. Some people might find this kind of reflection on death to be depressing or morbid. They might feel it would lead to a sense of giving up, of “why would I do anything at all”.  Overall, I have found it to have done the opposite in my life. It has brought a new sense of “why not” into my day-to-day. Why not strive to be the biggest, best, kindest selves? Why not try being courageous for others? Why not reach out? Why not experiment with love, in all of it’s forms? A quote from Cheryl Strayed that I return to often when I'm struggling over a decision: "We're all going to die, Johnny. Hit the iron bell like it's dinnertime."

One less sunset.

One less sunset.