What’s a Parent to do!

I know that this is supposed to be my learning/education blog and yes I am finally writing my dissertation (real progress – chapters are being written) but family comes first and I believe I need to talk this one out loud. Here is the challenge – how does one get attention and raise awareness without publicly airing personal concerns? I could write a great fiction but who would listen and how would that bring the issue to the forefront of those who need to hear it? This conversation has to do with getting acceptable medical care in British Columbia, Canada. Yes this is correct; the land of universal medical care, yet this is really the land where too many critically ill individuals fall through the cracks and this much-vaunted system appears to be designed to allow this to happen. Here is just one more story.

My dear daughter, in her mid-thirties has finally been diagnosed with endometriosis. Yes I said finally. This is a medical condition in which cells from the lining of the uterus appear and flourish outside the uterine cavity[1]. The many discussions of this medical condition online often limit the conversation around the level of pain that the individual may suffer. In my daughter’s case the excruciating pelvic pain never really goes away. Her diagnosis has been a number of years in the making despite many false starts and much misdirection about what was causing her to arrive at emergency wards time and time again buckled over in pain. My daughter’s repeated bouts of this debilitating pain have disabled her to the point where she has had to resign from many different jobs due to an inability to stand or walk or function in any normal way. She has become an invalid and I believe an unnecessary casualty in a society that has forgotten how to care for its citizens. The words quality of life have become just letters on the page.

Repeatedly she was told, “let’s get this pain under control and then you go see your family doctor”. Yes sure, see your family doctor who had tried repeatedly to get my daughter to see a gynecologist only to be told that this might happen somewhere between 1 year and 18 months and even after 1 year no contact was ever made. There was an emergency doctor who, at some point seemed to take an interest and who arranged for exploratory surgery and apparently did notice some uterine issues and then for whatever reason the doctor seemed to disappear without any follow-up. There were a number of emergency doctors who arranged for tests or scans but the following day the area of the hospital in charge of the test would phone my daughter and tell her that they had cancelled the test request because someone somewhere in the hospital decided the test was unnecessary. This happened at least 3 times. Who the hell is running the show? What is the point of a trained emergency room doctor asking for a test when some bureaucratic bean counter can decide not to give it? OK silly question – we all know it is the bean counters and politicians in charge of our medical care and not the doctors. This went on for over a year, and yes, this repeated disregard and disrespect comes with an enormous price. You start to give up and stop trying to fight because it appears that no one really cares and nothing will ever get resolved anyway. Bills don’t get paid and bankruptcy just becomes a fact of life. Lethargy comes next and what’s left of the spirit hangs on by a thread. Yes I have witnessed this with a heavy heart. My beautiful daughter has been beaten down.

I am not sure how many emergency visits to the same emergency finally allowed my daughter to be taken somewhat seriously and she finally got to see a gynecologist who decided that caution was the best approach but endometriosis was diagnosed. As a result of new meds the pain seemed to radically increase. Unfortunately the new meds were meant to be part of a yearlong effort to get this condition under control despite the increased level of pain. Hmm maybe this is not working as it should? However sitting with her in emergency late one evening I heard the medical staff tell her that at this stage everything was about pain management yet despite large doses of (yes all taken together) oxycodone, hydromorphone and other drugs, the pain is not touched although my daughter’s cognitive abilities seem quite impaired. We raise the issue of addiction – the answer is yes that is a possibility but we are trying to address the pain and we will worry about addiction after the fact. Then the real kicker comes with – why are you back here when you should be flat on your back with all these drugs? You must be coming back just for the drugs – ouch! OK I guess some folks do that but come on – show a little compassion and respect here. What was amazing about this visit as well was that despite this disrespectful brushoff and after spending time with the emergency doctor who appeared to contradict himself on what was to be done, a really sweet nurse came in and closed the door and talked to us about the challenges of dealing with a system that has great difficulty addressing women’s health issues particularly regarding reproductive organs. This nurse talked about the fact the only way my daughter would get the attention she needed would be if she continued to come through the emergency door and didn’t quit regardless of the apparent inability of the system to help her. But there was another issue – a hidden issue with regards to women’s health – the real issue of reproduction.

Since her early teens my daughter has always said she did not want children and if children were ever to be a part of her life there are many kids already around who could use a home so she never wanted to add to the population. She was never dissuaded from this view and her family doctor has always known this BUT when it comes to those who might surgically end her chances of having a child the whole world stops. My daughter has been repeatedly told that a hysterectomy would, with a fair degree of certainty bring an end to her endometriosis and an end to her debilitating pain and she could get on with her life – in other words, in her case the fix appears to be surgery in the form of a hysterectomy. Unfortunately it seems that everyone is far more interested in her being able to have children and to not carry out this surgery despite her repeated pleas for the surgery. No one is listening to the patient. I have heard way too many stories of married women with children wanting a hysterectomy being denied because some doctor felt that the woman was being too short sighted. Wow who the hell are we to be telling women what they can and cannot do with their bodies and their willingness or inability to conceive children? So yes my daughter now has to wait for up to a year (unemployed, depressed and in acute daily pain) so that she can get a second opinion from another male doctor as to whether a hysterectomy is an appropriate fix for her current medical circumstance. Yes the second opinion is not about helping my daughter and her endometriosis but it has to do with whether my daughter is a suitable candidate for a hysterectomy at her age. Yes this further delay is about whether some medical professional will “permit” her to have such surgery. Sexist attitudes are standing in the way of my daughter’s health and her ability to lead a life.

Who is looking after the patient? There are so many facets to medical issues that befall us. It is not just making the pain go away, it has to do with a phrase that has become so trite that we don’t really seem to understand it anymore – it has to do with one’s quality of life. Yet I really wonder if our medical system truly understands or cares about the issue of a person’s quality of life. We are willing to make patients drugs addicts to mask the fact that we really don’t know what else to do to help them and what the heck – we have money for drug addiction rehab – so I guess it must be cheaper than surgery or medical tests. I tend to think that there is a political agenda at play and somewhere, some group of individuals have made decisions about what types of conditions get what types of care and what gets done or not to address the masses that come through emergency rooms. Regional health authorities become nothing more than political buffer entities designed to stand between the ministry and the public. Our system is full of rich and wonderfully caring health professionals but the system itself is failing us all.

My daughter is not just another complaining female with a mind of her own and with health issues that appear to be dismissed. My daughter is a beautiful young lady whose life is literally in the hands of a system and individuals in this system who can’t or won’t do what is needed. I don’t know what to believe any longer and I am not the one to suffer the daily pain although as a parent I get to watch. As a parent I get to vicariously hurt with my daughter and watch her life become a sad shadow of its former self. I know that there are many in this province that have similar stories or worse – so what do we do? How can we change a system that appears to have so much potential yet has left a litany of inexcusable conduct at our doorstep? Are we being misled? I don’t know about you but I have no faith in our political masters: they spend their days attempting to charm us with obfuscation and we are left with layers upon layers of bureaucratic waste that just brings us full circle back to the door of the emergency ward where too many people’s quality of life is being played with because we can’t help them. If we could find the money we might find a private clinic and maybe that would help my daughter but what do we do – run to the bank every time the system fails us? As a parent I feel helpless and at times I join my daughter in feeling hopeless. There has to be a better way. What can we do as parents, as friends, and as citizens in this marred paradise?

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