Patient Pathways, Empowered Patient Checklist

Not choosing to be active in our medical choices…

Not choosing to be active in our medical choices for ourselves, ultimately is a choice – and it’s a bad one.

My friend, who lives in Vancouver, is the medical representative for her 84yr father who lives in Ottawa. She has 2 brothers in Toronto who are the alternatives and a sister with some mental issues that is at their fathers bedside most days, these days. Their father lived alone, was independent, and had a medical alert button that he had worn for the last 2 years. 3 months ago, while he had that medical alert off for some reason, he fell in his bathroom. He was found 24 hours later by a neighbour who was checking in on him. An ambulance was called, he ended up in emergency with a partial bowel blockage, then emergency surgery that ended up with a colostomy bag. He then had a stroke which left him unable to swallow so a feeding tube was inserted. This was all done with his approval as he nodded to the physicians each time they explained a new procedure to fix the new issue to him. As he was unable to speak until after the surgery except that a stroke left him with minimal verbal, so his family was not found and notified until 6 days later as he was unable to let them know who they were. He had always stated that he wanted everything done for himself and this is what they had done. Now, he was left with a colostomy that he did not want, a feeding tube that he was not happy with and partial paralysis on his left side, in a hospital in Ottawa, away from any family and those who would assist him with his health decisions. Even in this day and age, with cell phones, someone physically not being there is difficult for hospital staff to deal with when patients are so sick so quickly.

The family thought they had done all that they needed to do by making sure that their father had a medic alert button which when activated would also notify the key family to help out when some medical crisis arose, if he could not inform them himself. They had gotten a health representation agreement done so that the family knew who would be making important decisions with him. What they were unable to do, is have the critical conversation and documentation done for an outline of what their father would want as he aged, and as his medical needs became more prevalent. By not having those conversations, not making those decisions, not making a plan for his family, and documenting it, he ultimately made the decision to leave them unprepared for his health crisis. So as doctors discussed with him options with his choice of “do everything for me”, they did not discuss the ramifications of those choices. They had no idea what a good life was for him because in those crisis moments, they were doing as he had asked, what he thought he wanted, was to keep him alive at all costs. But this is not the way he wanted to live. And now that he was unable to verbalize clearly with his family, this made it all the more confusing for himself and his family. To make matters worse, the only child that was not to be speaking for him, was at his bedside 90% of the time as she was out of work and able to be there. The hospital staff continually defaulted to her as she was there and they could talk to her in person. They had the health representation agreement from the sister in Vancouver, but chose to deal with the sister present. And the brothers were 5 hours away, in Toronto, with families and jobs that kept them busy. Even after the Vancouver health rep spent 2 weeks at their father’s bedside, a month after the initial incident and surgery, explaining to the hospital staff that they needed to stop any further treatment and not treat the next infection that came along, they still listened to the child that was at the bedside who did not have authority to speak as the health representative for her father.

I know, this just doesn’t sound quite real or something out of a TV show…..but it is a true story. And my friend is still managing this crisis. In 3 months she has been back to Ottawa 3 times, had numerous phone calls with doctors and family to try and get everyone on the same page. It is, quite simply, a nightmare.

By not having the conversation about what you would like as a basic quality of life for yourself, you are most certainly setting up your loved ones for a tragic event. Most people couldn’t plan out this scenario for their worst enemy, let alone their beloved family or friends.

We can change this, and we need to… Have the conversations about what you want if or when a medical crisis happens. Chose a medical representative for yourself for when you cannot speak for yourself. Document your wishes in an advance directive. Maybe the easiest thing is to choose what you don’t want instead of what you might want……but have the conversation……and document it. Then your medical team of family, loved ones and your doctors will know what to do. Because not making a choice, or having a conversation is actually making a decision…..and that is a tragedy to put your family in that situation.