Health-care is designed around the illness instead of around the patient

This is when I still had boobies ... how I miss them nipples !

While paging through my FB page, I came across an inbox message that I had sent to John Costello some time back. This is what I wrote:

“I have learned so much with this illness ... how when you don't get better, you start to feel embarrassed, ashamed, humiliated ... because you are not getting well and you are not dying fast enough either”. After reading that, I spent a lot of time contemplating our health care system and how it fails the chronically ill, the terminally ill, and those with life-threatening diseases that they have to live with for life. When you find yourself at odds with the social norm, the road becomes extremely lonely, except for the few who travel the same path as you. And worse still is having a rare disease that no one understands, no one can see it and therefore, the patient gets left behind as society moves on with life. Most physicians have never heard of the disease and some are arrogant enough to tell the patient that google patients get on their nerves. Patients with rare diseases HAVE to become detectives so that they can live. Humble and compassionate physicians are hard to find.

The word ‘patient’ means one who suffers. Healthcare has been designed around the disease and not around the patient. The treatment is never about us, the person with emotions, a mind and a world-view. And those of us with chronic and life-threatening diseases who experience so much nausea and pain cannot be helped by a hospital. A hospital is for patients with acute illnesses or injuries.

The old view of a Hospice being the last place a person goes before they die also needs to be re-examined. Hospices should be for palliative care – and that care must be designed for the patients comfort. It must support what is best for us. The dying process must be made wonderful, rather than just less painful. How we die is all important to me. Our life has to have a dignified end to it.

There are two elements to suffering. There is the suffering that connects the healer to the patient. This I would call the necessary suffering that creates the place for compassion to enter into the space between the healer and the patient. It is the suffering that comes with having to grieve for all that you are losing, every day…a little more loss, until there is only one or two family or friends who still stay by your side. Without understanding, there can be no compassion. Somehow the care worker has to find that compassion between him/her self and the patient. That compassion makes suffering bearable.

I call these people who stay by your side to the end you soul mate. I have a ‘souler’, and I am most grateful to have him.

Then there is the suffering of pain and nausea, the loss of physical abilities, the inability to hear, see or understand properly what is going on around one. This kind of suffering is an abomination to the whole medical profession. This is where we have to start re-designing how we die. There is absolutely no excuse for the medical profession to with-hold drugs from a patient who cannot be cured and whose life is no longer worth living. To be told that you may not have stronger pain relieving drugs because you may become addicted to it is an insult to our intelligence. We should go into our last years, months or weeks in a state of comfort and wonderment – not because we are dying, but in spite of it. This would be good care for the chronically ill, those with life-threatening diseases and those who cannot be cured at all. Give us back our dignity. Don’t make us cry in front of you, begging for help. Don’t make us tell you that we no longer want to live like this. Don’t force us to google and speak to psychiatrists to find out the perfect drug to take that no one would be able to bring you back from; no stomach pumps and no urgent attention by paramedics and hospitals will help. But, society and the medical model of health care have made me do just that. I have my prescription. I may never use it, but it gives me the illusion that I still have some control over my life. I can still choose to live every day, knowing that if it gets too bad, I have a way out.