November 3, 2014

A Death with Dignity

Before I was a hospice nurse I was the primary caregiver of a woman with terminal cancer. She was my mother-in-law and I loved her very much. She was the first person who ever asked me to help her die.
As a lifelong advocate of choice and autonomy, it had never been a question to me that someone who was dying should be allowed to have control over the process. But it is certainly a new perspective when YOU are the one being asked to assist.
In the end, my beloved Charlotte died at the end of her disease process with no assistance from any of us. But it did give me pause to think about all the implications, especially in a state where that was not legal.
When such assistance is illegal via physicians that means that patients are forced to ask family members for help. So one is faced with the prospect of waking up each day with the man or woman who helped to end your parent's life. Strong stuff.
After becoming a hospice nurse, the boundaries were very clearcut. "We neither hasten or delay the natural dying process" or some variation on that is the official policy of most hospices out there. Many are also associated with religious institutions which adds more layers of complexity to an ethically complex situation.
What I learned was this: When a patient expresses a desire for assistance in dying immediately the appropriate response is to find out WHY they feel the need to die right now.
People who are in hospice care are NOT going to get better (with extremely rare exceptions) and are in a terminal process. There is no question that their lives will be ending soon. But why do they feel the need to die sooner than that? Sometimes it is simply that their pain is not well controlled and they are miserable. Controlling the pain or other symptoms can restore some quality of life for the remaining time. Other folks are struggling with the loss of independence, loss of dignity, and feeling of being a burden to family and caregivers. Directly addressing this and giving the person space to express and vent their frustration, and providing emotional support and respite for caregivers all can help alleviate some of that distress.
Then there are situations where the person is fully aware of the process ahead and desires the option to decide when it will end. Some disease processes are more painful, more messy, more distressing, or more depersonalizing and people who understand that may wish to spare themselves and their loved ones that indignity.
There was a gentleman I was caring for years ago who was facing terminal cancer alone, having lost his wife a few years previously. He had never dealt with her death emotionally, and had no intention of dealing with his own either. On my first visit he informed me that he had already made plans for suicide when he could no longer care for himself.
After some discussion with my organization I offered him an alternative that involved voluntary palliative sedation. Putting him in charge of deciding when he would be admitted and have this initiated. He agreed to this, and eventually was admitted to our facility when he could no longer stay home. He only had to ask, and the terminal sedation could start at any time. Interestingly, he never requested it. Just knowing that he had the option and was in charge of the process was all he needed.
Giving people the right to choose to end a terminal process is simply providing the humane option that our family pets are already given.
And I am so glad to live in a state that recognizes that right.