did you kiss him?

Did you kiss him?
Yuck! NO!
That's Good!
Why do you care?
I don't. It's just! Well I always thought we would have all our firsts together.
That's funny!
Why is that funny?
It's just! Well I always thought we would have our lasts.
oh.

The decision to die

I understand that hospice care is given to patients that are out of medical choices for healing, or have decided that continued surgeries or prolonged life support are not options they wish to pursue. That it is in fact a decision to die. And I have a lot of respect for care givers working in hospice care. It has to be an emotional strain to even consider getting up to go to work. But there is a critical issue with the philosophy of hospice care.

In our recent experience I found that once entered into the hospice system ailments are no longer taken seriously and in a timely manner. And in our case it was life ending, and yet not in direct relation to the cancer that lead to hospice as an option. The process of dying is ugly. It shouldn't be complicated by additional factors not cared for because, well the patient IS dying.

Because a patient has opted for hospice care shouldn't mean that they are without life prolonging health options. It shouldn't mean that care givers concerns weigh less. It shouldn't mean that measure are no longer taken to maintain quality of life. When you are watching a loved one face their death, the days they have left are important to them. They should be given as much time as possible in as good health as possible.

I honestly believe that had blood tests been taken, had concerns been addressed in a timely manner, that my father would not have died so quickly, or so horribly. The advice the doctors give you is to be the patient's advocate. Yet even when you are shouting the loudest in the hospice system there is no answer, no rush to get you answers, no regard for your concern because your cause is dying. The point is to die, not to live.

So from complications due to incorrect feeding mixture I lost precious time with me father. And being in hospice doesn't mean you are bed ridden. In our case my father was still full of life. And his symptoms of dehydration were obvious. The response was just too slow.

The contradictions are costly. Costly to the soul. Yes you have decided to die, or the disease has decided for you. But you should still have the option to live when there is an option. And you should be your own advocate, but then you should be listened to as well. It seems currently the health care system simply uses the "be your own advocate" line as a way to shrug off responsibility.

So when you make that final decision to go home and live out what days you have left. Just know that in the eyes of the hospice system you have decided to die. There will be no quick action to help you fight a non-related illness. You have signed off on death.