Bush Medicine 101: L38 - Decisions In My Mum Dying, And Living.

The good news is that we are all dying, some just faster than others, and to some extent we can get to choose how and where we do or don’t die.

Dear Family, Friends, Mentors, Colleagues and Jane-Your-Younger-Self,

I hope you are well. We are well.

Mum took a bit of a turn last week, not being able to swallow fluids.

She has been having difficulty swallowing solids for a few months, most likely due to a lower esophageal cancer or mass compressing her esophagus, but she’s improved since last week so we are taking things day by day.

ABOVE: My Mum on a walk in Berenty Lemur Reserve 2 weeks ago. Looking fab.

I love the Malagasy culture - they always start every conversation by asking, “What is news?”, even in business meetings.

Meaning, how are we, how is our family?

And this is a genuine question.

Perhaps because in Madagascar there is so much unexpected death, particularly amongst kids under 5 and young adults - due to malaria, typhoid, trauma and the like.

The question is pointedly purposeful because it is expected that if all is not well with our family, all is not well with us.

So true, and it is a genuine question we should add to our Western culture and way of doing life and business, where we should not expect the standard “I’m fine” response, but an honest “My Mum probably has cancer and cannot eat well, and we are taking things day by day”.

However one would then need to be equipped to deal with the honest answer, and I’m not sure many know how to because we have only been taught how to cope with, “I’m fine, everything is fine”.

Mum has chosen not to go for further investigations or treatment which I can respect, because it won’t change our management.

She doesn’t want to be operated, she is a high risk for anesthesia, and she definitely does not want to leave her home in Fort Dauphin Madagascar and go to South Africa for any surgery, chemo- or radiotherapy.

Away from us, her garden, and her friends, and possibly being too weak to be able to return on a commercial flight.

Many have asked if I am sure about her decision.

Yes, I am.

Because it is her decision. And she is definitely of sound and stubborn mind (runs in the family).

After 20 years of clinical practice I have witnessed several end-of-life / palliative cases.

The saddest cases for me are when the families panic, particularly towards the end, and overlook the wishes of the patient themselves, inadvertently taking away the patient’s rights to their decision, and with the best intentions send their dying away to hospitals for painful tests and treatment, which at the end of the day does not win back any quality of life, and minimal, if any, quantity of life, but makes the family feel better that the did something.

I would choose quality over quantity of life every day of the week for everyone on this earth.

Having worked in Madagascar for the past 15 years as a bush / remote doctor, and public sector in South Africa, I am of the very strong opinion that death can be beautiful by being and not doing, and western medicine over does tests and over does treatments for no measurable subjective (to the patient) benefit.

When a patient is nearing their end of life, I often see that the patient become too weak to challenge their family’s decision to not send them for further tests and treatment.

So they just concede because the alternative takes too much of their dwindling and precious energy and they just want to appease their family members.

However my Mum is not my patient, she is my Mum and she has a doctor who is managing her and has been discussing her options with her.

I have learned from all my clinical experience that “being” in this phase of life is more important than “doing.

Sitting in the garden, having a chat, going out to a friend’s plant nursery for a few sips of coffee, going to dinner even if it’s just for a soup, or staying home for dinner even if it’s just for a soup.

Isn’t that better than the excessive medicalized alternative - which is staying in a strange bed, in a room that is not your own, being poked and prodded and sent for more and more tests to come to a diagnosis which cannot be effectively treated, but a diagnosis we can come up with based on a well educated clinical suspicion?

If I had my choice, I would want to die being in my own home, in my own bed, not while enduring painful biopsies, surgery, and chemo- or radiotherapy which will not buy me back my quality of life.

The good news is that we are all dying, some just faster than others, and to some extent we can get to choose how and where we do or don’t die.

Mum, I wouldn’t have it any other way than your way and it’s a privilege to walk this road with you.

Kind and mad regards,

Mad Madagascan Mum, Daughter & Medic,

Jane

ABOVE: Family photo in Berenty Lemur Reserve 2 weeks ago - a bucket list item for Mum.