The Accidental Advocate

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Advocating for the people we love is a skill worth cultivating

By SANDRA SUKHAN

Advocacy is a skill worth developing. Lawyers, social workers and other helping professions have formal courses of study. But for a regular layperson, this skill comes in handy in just about every area of one’s life.

According to Dictionary.com, an advocate is a person who speaks or writes in support or defence of a person or cause.

I am not formally trained as an advocate. My learning came about mostly by life and circumstances. Reaching back into my memory, I think my advocacy started when I was a young child of about eight or nine and saw people taking advantage of a blind man selling sugar cakes for a living on the school playground. They tried to trick him by giving him pieces of metal in place of coins. I could not stand that he was being treated so badly, so I offered to sit with him at recess and at lunch so he would not be robbed. I suppose in my child’s mind, I felt he needed my help. Many years later, he told me that what he appreciated most was my willingness to spend my free time with him.

Fast forward to life as a young mother and advocating to my school division for French Immersion programming for my children. That was a struggle which lasted several years, culminating in a disagreement with them about charging families a fee to provide their children with a supervised lunch hour. The division would not offer to bus the students home instead, and it justified the lunch supervision charge by saying that the parents could afford the $200 annual cost per child. Many parents could indeed afford the costs, but some could not. As President of the Parent Teacher Association, I advocated on behalf of the parents that could not, much to the chagrin of those who could.

Over the decades, there have been multiple incidents of advocacy, but the one that had the greatest impact was when my father was diagnosed with cancer in 2006. Fighting the healthcare system – which is, in fact, the government – is a battle no one should have to endure. But sadly, it is very common.

I recall the day my Dad told me that he had cancer of the lacrimal sac. I didn’t even know what that was (it is the duct that drains tears from the eye into the nasal cavity), let alone what the best course of treatment was. From that point onward, I attended nearly every medical appointment with my Dad and always took a notebook to record what was being said so that I was not apt to forget something critical. For most people getting such a shocking diagnosis, nothing else registers. That’s the benefit of having a family member or friend going to all appointments with a notebook. I referred many times to my notes, wondering how I could not remember everything that I had written down. I tried to imagine how my Dad must have felt. He relied on me explicitly always to know what was going on, and he was certain I could and would find a solution to whatever issue arose.

Cancer of the lacrimal sac is very rare (about 1 in 300,000 people), so by the time it was diagnosed, it was already at Stage 4, the most advanced stage, which had already spread to his nasal bones and some of the orbital bones.

I was grateful for my extensive experience doing research during my years of academic study, but there was very little literature to be found on treatment options for my Dad’s diagnosis. I could simply take the doctor’s course of treatment as a given – to remove his right eye and the surrounding bones that supported the eye. After getting over the shock of the diagnosis, I started researching alternative treatments, including contacting doctors in the USA and other parts of Canada to get advice or suggestions, but to no avail.

In the end, the only option was for Dad to have the nine-hour radical surgery, followed by weeks of harsh radiation to kill any trace of the cancer. There was an 85 percent chance that the cancer would not return; but sadly, he was in the 15 percent group, and six months later, the cancer returned, and it was terminal. Dad was given 6–18 months; but in the meantime, he needed another major surgery on the lymph nodes in his neck. That was when the real nightmare started.

The medical team presented us with only one option: Dad had to have all his teeth extracted before the surgery as a precaution, with no hope for dentures until his gums healed – at least six months. My Dad was always careful about his appearance for as long as I could remember. This news felt like a slow death sentence, heaped on the one he was already given. When I asked the doctors why his teeth had to be extracted, they said it was a precaution in case he got a cavity after the radiation and had to have an extraction. I could not understand the need for such a precaution because they gave him 6–18 months to live, so a cavity was the least of his problems. I could not accept that the quality of his life would be reduced to no right eye, an 18-inch scar on his left leg from where the doctors took the grafted flesh, a huge incision from right ear to his throat and eating puréed food for at least six months because he’d have no teeth. It seemed inhumane.

I spent a few sleepless nights trying to consider my options, which were few at this point. I finally contacted the father of my daughter’s friend who was a dental surgeon and asked his advice. He suggested monthly appointments with a dentist to ensure Dad’s dental health. Then I called a friend in Toronto who was a denturist. He said that if Dad had to have the extraction, he would make dentures just after the surgery. Then in six months, if the gums had shrunk, he’d make another set to fit. I suggested to Dad that we go with the no extraction option, so that’s what we did. My Dad lived for over four more years with his teeth intact. For all the indignities he had to suffer, that, at least, was not one of them.

We travelled to Guyana, India, and the Panama Canal after his terminal diagnosis and surgery – with all his teeth intact. I am certain that if not for my advocacy, he’d have spent his last few years holed up in his house because of his disfigurement. He lived life to the fullest as best he could. There were many more such situations where strong advocacy was required for him, including lack of available home care, palliative care, overprescribed medications, requesting that appropriate medical supplies be used for his wound care instead of cheaper, more painful and less effective ones; lack of monitoring of his meds and nutrition in general. The list was long.

I now find myself in a similar advocacy role, but this time it’s my mother who was recently diagnosed with Lewy Body dementia. She became ill one day and I took her to an urgent care centre for what I thought was a urinary tract infection. After nine hours waiting to see a doctor, I finally asked the nurse if she thought there was anything humane about an 87-year-old woman sitting in an emergency room from 5:00 pm to 2:00 am waiting to see a doctor. At the end of all of that, she was sent to a psychiatric unit at another hospital and later transported to a third hospital because they had a bed for her to be admitted. The bed turned out to be a partitioned section of a lounge with a bed – literally.

My mother called me, nearly in tears after they transported her. I went to the hospital and was mortified to find her in the partitioned area that she described. I asked to speak to the unit manager who told me that it was the overflow area until a room could be found in a day or two. I told her I would sit there until they found my mother a room or I’d take her home. They threatened to send her downstairs to the emergency room. I took that option and was ready to have her moved. Within a few minutes, they found her a room.

The advocacy continues. My next challenge is with the pharmacy which has the contract with the supportive living facility where Mom is living. Her prescription is filled on a weekly rather than quarterly basis at a dispensing fee of $3.25 for each prescription. Dispensing fees that were $300 in 2016 will rise to more than $1,800 for 2017. This does not even factor in the higher costs of her meds which she will be forced to pay. Her prescription costs will go from about $1,600 last year to almost $6,000 in 2017. If you think this is legalized extortion, it is incumbent on you to become an advocate for someone who needs it.

Here are a few tips based on my years of experience as an advocate:

  1. Talk to the person you are advocating for about your role; that is, agree on what you should or should not say or do on their behalf.
  2. Keep accurate notes, whether electronically or in a notebook. This makes it easy to recollect what was said and when. If it’s meeting notes, include dates of meetings, who attended and what was said. End with the date of the follow-up appointment or meeting. An electronic calendar or a yearly calendar taped into the notebook is also useful.
  3. Ask as many questions as you need to and listen actively to what is being said. This will be critical when it comes to making decisions or providing advice to the person you are advocating on behalf of.
  4. Learn some of the technical jargon of the issue you are dealing with, but ask for everything to be explained in plain language. This is very useful, especially when communicating information to other family members.
  5. Do as much research as you can on the issue you are dealing with. Examples include: side effects or contraindications of medications; legislation pertaining to health, education, law; provincial or institutional rules or guidelines for provision of services.
  6. Trust your intuition, even when the experts sound like they know what’s right. You know your family member or friend on a personal level, so if something doesn’t feel right, it likely isn’t.
  7. Build a strong network of people you can trust and rely on. This comes in handy when looking for information, other resources or help with errands and appointments. Talk to others in a similar situation. Learning from the experiences of others saves a lot of time.
  8. Try very hard not to get angry; this destroys any relationship you may be building. In conversations, speak calmly and stick to the point you are making.
  9. Be steadfastly persistent for as long as you are the advocate. It is sometimes a long and tiring journey and not limited to the times you accompany your family member or friend to a meeting or appointment.
  10. Lastly, remember that self-care is always a part of advocacy. If you are physically and emotionally strong, you will be able to go the distance.

ss1Winnipeg writer Sandra Sukhan was born and raised in Guyana. She recently published a cookbook of some of her favourite recipes, including traditional Guyanese food. To order a copy of Comfort Food From Sandra’s Kitchen: Guyanese and Other Favourites, contact her at sandrasukhan@hotmail.com or 204-488-2628.

 

 

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