What is the Outcome to Focus on When Someone is Dying?

What is the outcome you will focus on when someone is dying?

One of the most striking experiences I had was watching my grand auntie spent her last days in palliative care. She was diagnosed with skin cancer and was at a terminal stage. I was 30 mins late, and I missed saying goodbye to her before she died. She was more like a Nanny to me when I was a child. She is one of the persons who inspired me to go into the helping profession. She is remarkably present with us kids; she didn’t go out of the house much. In fact, she was probably socially anxious and was probably subjugated to my domineering Peranakan grandmother (i.e., matriarch).

My grand auntie was so meek and ridden with fear that in fact, half of her body was attacked by skin cancer 10 years before she told anyone. It got serious pretty quickly. She was dying.

There she was in her bed. We worried about her spending her last days away from home, but to my surprise, she was very well taken care of in the hospice. I  didn’t know much about palliative hospitals back then.

I was amazed by the care team. What surprised me was how much dedication and presence the nurses, pastoral workers, nuns gave to the dying. They took the time. They listened with no agendas. They sat with you. They were not in a hurry. This was so different to the hospital care she had just received.

Standard medical care is more about extending life. We sacrifice the short-term with surgeries, invasive interventions, chemotherapy, with the aim of prolonging your life. With palliative care, the aim is about helping the patients experience the fullest possible of their lives right now. This in turn, though not all the time, may provide a side-effect of extending your life.[1]

It turns out that palliative care is not palliative sedation.[2]

Here’s the other thing that I’ve learned from the care team looking after my grand auntie: They treated everyone as equals. This is easy to preach, but hard to do, especially if work demands are high and intense. To treat someone as a true equal is not to help someone from a higher place of knowing, but to embrace our shared reality.

~~~

Psychotherapists have a lot to learn from people who work with the dying. Care workers in hospices cannot focus on an outcome. Mortality gets to the finishing line sooner or later. Care workers in hospices practice the true meaning of the word “Compassion”, derivative of the latin words “pati” and cum”, which means “to suffer with.”[3] This applies not just to dying, as long as the person is experiencing what the zen roshi Joan Halifax calls “edge states”[2].

I extrapolate this idea of edge states to anyone who is going through the bridges of life: A marriage breakup, retirement, coming out, moving out, death, ambiguous loss[4], a traumatic period or flashback, a manic state, a psychotic episode, etc.

When we meet someone at an edge state, we must resist the urge to provide an anaesthetic experience.

Instead, we must meet this person and provide the conditions for emotional safety—even physical safety—and allow the river of compassion to flow through for an aesthetic experience of being in conversation with a human being who is on their side. We can no longer stand be a numbed professional.

This is not some platitude about “being kind to the less fortunate.” To do so, is to say that we are not equals. This says that those “less fortunate” have not arrived at where we are, and we should sympathise with them. Instead, to have compassion requires us to treat each other as equals. This egalitarian framework allows us to acknowledge, we all share a common fate and destiny.

Even though we see a client once a week or so, we cannot afford to be passive “witnesses” to our clients and their struggles. Instead, we must seek to be “with-nesses” to their despairs and triumphs. To be a “with-ness” communicates to the person, “I am there for you every step of the way. I am with you.”

For someone at the edge states of dying, the “outcomes” that we should be looking at is “what does having your time well-spent look like?” or “what does a good day look like for you?”

~~~

How we experience time affects our orientation to life. If we knew we have much time, we squander it away. If we knew that we had one more month to live, we will seek to be alive.

The late Morrie Swartz reminds us, “If you know how to die, you know how to live.”[4]

Footnotes:
[1] Being Mortal by Atul Gawande
[2] Interview with Joan Halifax by Krista Tippett
[3] Compassion by Henri Nouwen, Donald McNeill, & Douglas Morrison.
[4] I highly recommend therapists to read on Pauline Boss’s work on Ambiguous Loss
[5] Tuesdays with Morrie, by Mitch Albom. This book meant alot to me when I read it in my early twenties.

Please note that the books linked here are from the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn a small fee by linking some of the resources listed here to Amazon.com and affiliated sites.