The One Thing That Patients Need The Most

Besides Great Medical Care

Today I want to talk about the importance of having or being a patient advocate.

I’m not sure everyone really knows what this role is or how important it is — I didn’t realize it myself until the end stages of my parents’ lives.

You see I had become a patient advocate without even knowing it.

First, A Little Background

When I was 16 my mother was diagnosed with Stage 4 Non-Hodgkin Lymphoma, and was given six months to live.

At the time I was “sort of” an only child in that my three sisters, who are 7 and 8 years old (two are twins) had already left the house. They were in grad school or had moved to different cities in a different country and were not around too much.

This was in 1981, before smart phones and Skype and FaceTime and before it was relatively easy to hop on flights and make quick trips.

So essentially, I was an only child.

My father was a big man with a booming baritone voice, a warm smile, and a firm handshake. He could do anything at work or at home or for the neighbours or at church.

He could do anything except fix my Mum.

The Early Years

In the beginning of her disease, the only way I could help was to Be Mum, as much as I could. There was an unspoken expectation that I would cook, clean up, and look after things as much as possible.

That’s a heck of a thing to ask of a child, by the way. Years later I’ve figured out that it was just “the way” at the time.

In the first ten years or so I learned a lot about hospitals, doctors, procedures, outcomes, expectations, despair, hope, and help.

I come from a family with two nurses, three medical doctors, and lots of science-based thinkers, so although I am none of those things, it was natural for me to learn as I went.

Mum beat two “six months left” prognoses during those early years.

The Middle Years

I don’t remember too much about what I call “The Middle Years.” My sisters were rearing their families and came out as often as they could, and were certainly counsel and support to me.

I lived my life in the same city as my parents, and became the unofficial Caretaker of Things, which, to be honest, is natural for me. I am the logistics person — clinical, organized, efficient, sometimes detatched. I organized trips and house things and helped in numerous ways that I don’t even remember today.

I should point out that I also had my own health concerns during that time, and that Mum, ever the nurse, looked after me a lot too.

Mum had regular checkups and the cancer never went away. Rather, it lay dormant for years at a time, existing as a lump in her lung, and requiring doses of chemo now and again.

I learned a lot about prednisone.

Sometimes we went to doctors offices together, other times she and Dad went and didn’t tell anyone. That was a “thing” of hers for a while — don’t tell anyone. Don’t burden them.

We always found out.

The Later Years

In 2004 my father had a serious heart attack.

Fortunately, my mother the nurse knew exactly what was happening. They were out getting groceries and she whipped him the 2 or 3 kilometres to the hospital.

Dad survived with barely any traces of what happened, which amazed and confused doctors. (This happens a lot in my family.)

“He should not have survived that,” they said.

While Dad recovered I continued my “medical education,” and started noticing more stubborness and irrational behaviour from my Mum.

It makes sense of course. If you spend all your energy fighting a disease and maintaining a tightly controlled sense of self, you would naturally be thrown for a loop when your dearly beloved is also thrown for a loop.

It turns out that was the beginning stages of Vascular Dementia for Dad. (Vascular Dementia has similar signs and symptoms as Alzheimers, but develops differently as a result of tiny strokes in the brain vs. the progression of a disease.)

Over the next few years Dad’s dementia robbed him of so much, and Mum’s cancer flared up and mutated into a new form. Her treatment was so harsh, and so all-consuming that she was unable to make good decisions, and in fact avoided most decisions.

Without having her committed, there was little my sisters and I could do, although we certainly tried.

The End Years

In 2009 my mother was so weakened from her treatment that she could barely walk. My father was in a happy demented state, meaning that he would do whatever you asked with a cheerful grin.

As an aside, I learned that people with dementia often become “more like they are.” This was certainly true for Dad and made it easier — and bittersweet — to care for him.

Mum and Dad had to be moved to a care facility, and they (she) chose to go back to her home town, a five hour drive from me, but in the same city as one of my sisters.

This became a group effort for my sisters and I, because although one sister was in the same city (and she was an amazing emotional support for my parents), she wasn’t comfortable with medical decisions and logistics.

So while the one sister provided the daily care and companionship, the rest of us banded together to do the Patient Advocacy from a distance, and to visit as often as possible. It was easiest for me to visit, as I was closest without actually being in the same city.

We are so lucky that their savings allowed for them to stay in a beautiful home with independent living, gorgeous grounds, and excellent 24/7 care.

Mum and Dad were married for 56 years and so it was no surprise that when Mum passed in May of 2012, Dad didn’t wait too long to join her. His dementia was very advanced by then, but we took him to her funeral and he rejoiced in the music and flowers and family.

I think he knew. And I think he wanted to be with her.

Patient Advocacy

One of the biggest lessons I learned in those years, although I didn’t realize it until I reflected years later, was the importance of a Patient Advocate.

A time of illness is a stressful time for patients as well as for their families. The best-laid plans can go awry, judgment is impaired, and, put simply, you are not at your best when you are sick. Patients need someone who can look out for their best interests and help navigate the confusing healthcare system–in other words, an advocate.
~The Institute for Healthcare Improvement

Imagine how you feel on your worst sick day. Exhausted, tired, groggy, barfy, and generally awful.

Now imagine that you have to go into a hospital, navigate different labs and appointments, take instruction, fill prescriptions, and get yourself home again.

Now layer on other possibilities: you’re hard of hearing, you have a physical disability, you have anxiety or depression, you don’t speak the same language as people in the hospital, you’re from another country, you’re scared, you’re overwhelmed.

Can you imagine all the information you miss? Can you imagine the decisions you have to make?

Can you imagine??

I remember one day when I told my boss about my Mum’s upcoming treatments. He was incredibly supportive and caring, and he said to me, “Ruth, the most important thing you can do right now for your mum is to be her advocate through the medical system.”

I never forgot that, and he was right.

I have many examples of how patient advocacy played a role in my parents’ care. Here are three:

Example One

My mother received care in the amazing Princess Margaret Cancer Centre in downtown Toronto, Canada. It is one of the largest cancer centres in the world and has an incredible reputation.

But mistakes happen even in the most amazing organizations.

One day Mum had to go into the hospital for her regular check-in at the haematology clinic. The process was simple but annoying:

  • Drive about 90 minutes to the hospital,
  • Park,
  • Go check in at the clinic,
  • Get an order for blood work,
  • Go to a different floor to the lab,
  • Wait for blood to be drawn,
  • Go back to the clinic,
  • Wait for the blood results,
  • Wait for the doctor,
  • Get results,
  • Wait for prescriptions,
  • Go to the pharmacy,
  • Wait for prescriptions to be filled,
  • Go home.

I drove my Mum to most appointments, and one day was a particular mess. Things weren’t passed back and forth properly between lab and clinic, the doctor was late, etc.

The receptionist handed me Mum’s prescription, and I looked at it and told her I didn’t think it was right. She argued it was, I asked to see the Dr, and of course, it was wrong.

Example Two

My mother was in hospital many times at the end of her life. During one visit to a hospital I will never set foot in again (not The Princess Margaret), the doctor almost prescribed medication to my Mother that would have been disastrous.

Remember that by this time I’ve learned from almost 30 years of hospital visits, medical talk, and drug interactions.

Doctor: Are you in pain Margaret?
Mum: No.
Me, in an aside: Not true. She’s been in pain every day of her life since 1981, and she’s just had a hip replacement. She tells me of her pain every day, but doesn’t want to bother you with it.
Doctor: Margaret, why aren’t you on Tramacet?
Me, in my head: Since when do you ask a sick old woman why she hasn’t been prescribed something? Also it’s in her charts that Tramacet causes her to fall, and so she is on different medication.
Me: Isn’t Tramacet contra-indicated for her present condition?
Doctor: looks at chart, clears throat, and says, “Oh yes. Right.”

Example Three

In the last year of Dad’s life he suffered from some rectal bleeding. (Not to be gross, but it meant that sometimes there was blood with his poops.)

One time there was enough that the facility he was in decided he should go to the ER.

My sister was called in, and a doctor advised her that they wanted to do a colonoscopy as soon as possible. Not knowing anything about it, and being very upset by seeing her Dad in the ER, she agreed to it.

If you have ever had a colonoscopy or know anything about it, you know that the preparation for it can be unpleasant. For most people it’s totally fine, it just means you need to be near a bathroom. A lot.

For an 84 year-old man with advanced dementia, it is traumatic. Dad had no idea what was going on and slipped into a state of delirium, which is another way of saying that his confusion increased dramatically.

By this time Dad had become aggressive and restraints were used, which worsened the delirium, which made him more aggressive… you get the picture.

My sister managed to get another sister (who is a doctor) on the phone, and she asked the critical question: “What outcome is hoped for with the colonoscopy? It will either be polyps, which we won’t treat, or cancer, which we also won’t treat. So why are we putting him through this?”

Dad did not have the colonoscopy, but the preparation worsened his overall condition.

Imagine if at the very beginning of the incident someone had been able to help my sister say, “What is the purpose of this test? Is it necessary? To what end?”

The Lessons

If you are a patient, find an advocate. You don’t need to be an 80 year old to need one. If you are going through any kind of unfamiliar and/or serious procedure, you need an advocate. You need someone with you who can ask the questions you will forget, write down the answers you need to know, and say “To what end?” at the right times.

If you know someone who is a patient, help them find an advocate. Many hospitals actually have advocacy programs for people who have no one with them.

If you can, be an advocate. Educate yourself. Always ask “Why” and “To What End.” Don’t be afraid to be a pest, but do it nicely. Be polite. Be firm.

In my opinion it’s one of the most important things you can do for someone you love.

Have you been a patient advocate or experienced having one? I’d love to hear about it.

Thanks for reading.