Lessons learned about advocating for the sick and/or vulnerable

Many of you know that I have been on a journey with my husband through the health care system in Canada for many years now. I want to preface this post by stating that doctors and nurses in Canada are doing their very best within a health care system that has undergone severe budget cuts in the past few decades. Monies that have not been replaced. These cuts have played havoc with the ability of health care professionals to extend full and proper care to their patients. A shortage of both doctors and nurses mean patients are not receiving optimum care. Making patient advocacy an absolute necessity.

It became clear to me why patients need somebody to advocate on their behalf during my husband’s hospitalization about three years ago. At that time, he’d only been in hospital overnight when I received a call from him the following morning telling me he’d been released and needed me to come pick him up. It was the coldest day of the winter with temperatures dipping to around minus fifty Celsius with the wind chill factor. It was also in the midst of a flu epidemic that was keeping our emergency room crowded with people, and, no doubt, creating a bigger demand for hospital beds – hence my husband’s discharge. During the drive home he held his door open while he vomited on the pavement. I was incensed, but he adamantly refused to go back to emergency, I should have insisted.

Fast forward a year or so, it was another case of him being unable to keep food down and he was having trouble breathing. He spent a week in hospital but was released, still sick. It was an awful week at home. He couldn’t eat anything without throwing up. He looked like death. He spent every day in a zombie-like state. We were following the directions given us when he was released but he was getting worst. Finally, I called an ambulance to take him back to the hospital.

 He would be hospitalized for another three weeks. He had so many issues. One of which was a heart arrythmia and doctors feared he may have another heart attack. (He’d undergone a quadruple heart bypass a few years ago.) After much debate between medical specialists he was air lifted to Edmonton for an angiogram. Now, following an angiogram procedure the patient needs to lay flat for several hours to prevent bleeding. In my husband’s case he was put in a wheelchair and then flown back home. It resulted in a blood clot in his leg that caused it to swell to three times its normal size. It aggravated his health and caused his hospital stay to be extended. I should have been with him. Weak and sick he was in no condition to fight for himself.

In March of this year my husband had to be hospitalized yet again. Initially, I thought it would only be for a few days. He had fluid build up on his heart and lungs yet again – a condition he’d been hospitalized for previously several times.  I wasn’t terribly concerned – a few days on oxygen and he would be home again – so I thought. But a blood test revealed that his blood was very thin – a result of medications he was on that were not monitored. Special care had to be taken to ensure he wasn’t cut as he could bleed out very quickly. Red flag number one! After a few days in hospital a lung specialist was called in about his difficulty breathing. Apparently, he had been living with a damaged diaphragm, likely caused by heavy work he’d done when he was young. At any rate this resulted in decreased lung capacity. The doctor remarked on his surprise that this had not been caught earlier in one of his many hospital stays. Red flag number two! Then his blood pressure started dropping dramatically the minute he stood up leading to a couple of falls and scaring both my husband and his nurses.  Red flag number three! Then he started throwing up and experiencing acute pain in his side. After many tests and further investigations doctors diagnosed a gall bladder attack, but due to his history and with a heart arrythmia, it was decided that he needed to be air lifted to the University of Alberta Hospital – NOW! Our local hospital is small and does not have the diagnostic tools, or the number of specialists that are available in the city.

I was offered a free ride on STARS, the air ambulance, flying him to Edmonton once again. Naturally I said yes – I didn’t want a repeat of what had happened to him the year before, that quick shuffling him back home to save dollars. I was determined to be his voice and his advocate no matter what happened next. How often I would be called upon in the weeks ahead!

The problem, as I see it, is that patients are treated for whatever malady they are admitted for, without consideration of the overall picture. This can lead to dire consequences for the patient, if there is nobody to speak on their behalf. The first week in Edmonton was extremely stressful. Like most hospitals, patients are placed in the first bed available, in my husband’s case this was a bed in the orthopedic wing on the surgery floor. The University of Alberta Hospital is a teaching hospital, which means he had many interns and student nurses caring for him. Which is fine, as long as somebody is overseeing their “care”. 

One morning, after we’d been there a short time and doctors had brought his pain level under control, two bright-eyed students appeared by his bedside. “We’re going to get you up today”, one said. I looked at them rather incredulously and asked if they had read his chart. “Do you know that his blood pressure drops substantially the minute he stands up and that he’s fallen twice at the hospital back home?” I asked them. No, they did not know this. No, they had not read his chart.

 At another time I was reading the ingredients in his i.v. bag: sodium and potassium were listed. Off I went to talk to the charge nurse to question this. At that time my husband’s kidneys were failing and we had been told by his kidney doctor about the importance of limiting potassium and cutting salt out of his diet as much as possible. She told me the surgeon looking after his gall bladder had ordered the i.v. while the kidney doctor had ordered it stopped. She had two contradictory orders and wasn’t sure which she should follow. I explained the importance of keeping potassium and sodium (salt) to an absolute minimum in order to avoid dialysis and asked that the i.v. be stopped until she spoke with both these doctors. She did and the issue was resolved.

These are just two examples where I had to speak up on his behalf. He was so sick and so very weak. For two weeks he was unable to eat anything – partly because he couldn’t and partly because of the tests that required he not eat or drink beforehand. I shudder to think what would have happened to him if I hadn’t been there. How many patients have no one to advocate for them? People who are very sick do not have the strength to be fighting with health care workers, nor the presence of mind. In a perfect world this would not be an issue. However, with administrators facing ever increasing financial pressures, patients are often discharged from hospital the minute they can stand on their feet, regardless of how long. Furthermore, patients are not treated as whole human beings, but rather for the specific issue that brought them to the hospital in the first place, never mind how many other health issues they may be experiencing.

So, if at all possible, and I know in many cases it’s not possible, make sure your loved ones have an advocate if they are hospitalized, and even if they’re not. In Canada most family doctors can only address one issue due to rules and regulations regarding payment. It is a sad situation and one that should be addressed by the government. Until it is the weak and vulnerable are at the mercy of the system – and the system often fails them.