Sadly my mother passed away while I was in transit back to the UK after a 2 year battle with heart disease. In the end, she went peacefully in her sleep after a sudden clot on Saturday, something we are all very thankful for. It is better to go with grace and dignity than be in pain for days and weeks or months on end. She was in very good hands and couldn't have been in better care since she was on my sister in law's critical cardiac ward and they would have done they very best to make her as comfortable as possible. My mum's worst fear was always becoming so incapacitated that she was rendered helpless, after a previous heart attack reduced her physical abilities somewhat. She was never really the same after that, but was able to function as best as she could while maintaining her independence.
My eldest niece went to visit her Grandma in hospital on Monday and was shocked at how frail and thin she looked. The youngest chose not to go, preferring to remember her as she was. I respect both of their decisions; I didn't have either choice as I was regretably late back again and she passed away in peace while I was in transit. At times like these, I am just grateful my mother didn't suffer and to be scooped up by my brother's family so my feet remain on the ground with a relatively clear head. We come from a family, my brother and I, that is relatively undemonstrative and unemotional. Excess anything would be frowned upon, no matter the circumstances.
This led to an interesting and informative discussion last night with my sister in law, a devoted and dedicated cardiac nurse. She does a phenomenal job; I don't know how she finds the strength to deal with death and dying patients every week. We talked about the differences in the US and UK healthcare systems and how NICE impacts the access to new treatments. We both agreed that a single unified national decision and formulary is much fairer than the post code lottery that exists at the moment, where someone in Cardiff can get access to newer, better, treatments than someone in say, Hull simply because their primary care trust has a different formulary. The inequities of that system seem unfair at worse and silly at best; the UK is one country not always united in consensus. Different healthcare trusts will take the NICE decision and implement them differently depending on their budget decisions and constraints.
How does this affect the US? Well, firstly this sort of healtheconomic analysis is inevitably coming across the pond, so manufacturers had better get used to the idea that different cancer drugs may be restricted in the future. After all, my mother's illness and peaceful passing made me realise that let's say she had lung cancer instead of congestive heart failure. Would an extra few weeks or a month had made any difference? No. It only prolongs the pain and agony for all around if the diagnosis is clear.
There is no cure for advanced cancer, data is measured in increments of survival, usually by a matter or a few weeks or months. But at what cost? Is spending $50,000 for an extra month of life really the best we can do?
It is my hope for the future that as we learn more about the science and biology of disease, we will develop better, more targeted combinations that shut off the critical aberrant activity that leads to cancer, thereby leading to significantly longer progression times than we have now. After all, the success of Gleevec has lead to patients life expectations improving from 3-4 years to a much more robust 10 years plus. That's a huge improvement, not a couple of weeks. We must not forget, however, that personal responsibility to one's health and fitness should play a much larger part than it does in many cases.
How should we help further better patient education and, more importantly, action for change?