I was visiting a patient on my Monday morning shift at Treasure Coast Hospice. This was a gentleman in his late 50’s with cancer, who had been hanging on for over ten days. Family and buddies had come and gone, having to get back home both far and wide. I marveled at his tenacity. Just hanging on to that one thread from slipping into the netherworld. How does that happen?
If you don’t want to hear about death read no further. You would be joining many others who choose not to talk about it. They deny it exists. Our miracles of modern medicine convince us we can be cured of anything. We are not talking about what your body or psyche will be like on the other side. We are going to give you a few more precious months or years. Quality of life? What is that?
People have survived well past medical predictions. Some have even thrived and gone on beyond their wildest dreams. That is a marvel and a testament to their will and perhaps their faith. Yet so many cling to a hope that is a mirage. Their beaten bodies show up at our doorstep at Madera House. A battle well fought or a cruel injustice? Is it fair to the caregivers who have worked so hard for years? The question haunts me.
In hospice when a patient transitions it is quite evident. A person you spoke with yesterday may be in a semi comatose state. There is not so much a conscious decision but rather an automatic body response to survive at all cost. Your extremities become cold as your efforts to exist are centered in your torso. Breathing becomes more and more shallow and at times it seems to stop, only to frighten this poor old hospice volunteer to death by a sudden gasp. And then you pass.
If you are privileged to be there you realize a sacred event has occurred whether you are religious or not. There is a peace and quietude that ends a life of however long. When my son was born it was the beginning of being allowed in the delivery room for dads. The OB wanted to meet me to make sure I was not going to my knees. I was struck when he said that each time was a miracle. He opined, “There are five in the room and then there are six”. As I sat with this dying man I thought to myself, “There are three in the room and soon there were will be two”. The cycle of life.
Nobody wants to die but I don’t know of anyone who has beaten the rap. I think often of my own morality. I take stock on a regular basis and ask myself if I have lived a good life. It is not maudlin but sobering. “Life is precious” is more than a suitable aside after seeing trauma. I walk out of there humbled and with a different perspective on my crazy world.
Hospice is one of those institutions and philosophies that is so misunderstood. I have just been asked to join the board and I hope in the days to come to be part of a speaker’s bureau to tell our story. People freak out at the word and that is sad. It is the embodiment of empathy for one’s fellow man or woman. The word meant “inn” or resting stop in the journey during the Middle Ages. Indeed it is on this road of life.
Spouses and families are struck with denial and even a sense of abandonment when they commit to be part of us. The patient must be certified to have a prognosis of six months or less to live. Yet you can leave hospice at any time. We treat the pain of the illness not the illness itself. We do everything we can to make you and your loved ones as comfortable as possible. We are very good at it.
80% of Americans would rather pass in their homes rather than a hospital bed. In spite of this, 80% die in hospitals or nursing homes. We have both an in home and our residence program of care. We neither retard or accelerate your normal progression. You will be treated by some of the most caring and gentle professionals in the world. You are in our hands and we take that responsibility with the utmost of devotion.
Probably one of the most fascinating aspects of hospice is that people do enjoy a better quality of life. In Denver, I had a man in his eighties who escorted his wife’s stretcher into our residence in tears. He just blurted out to me. “I just couldn’t do it anymore”. I hugged him and told him he was home. I can’t tell you the number of families that state unequivocally they wish they had done it sooner.
The upshot of it all is that the patient is usually the one who get its most clearly. Their loved ones often don’t or are so intrusive as to create quite a ruckus. We are used to it but it is often comical when the one in the bed winks at me while the spectators think they are calling the shots.
I had a woman with ALS who chatted with me for about a half hour while scribbling on her IPad. She was beyond accepting of the hand she was dealt. She said the only problem was when people would start crying at her bedside. The two of us were laughing when she wrote,”They have go to get over this.” She gave me a big Thumbs Up as I departed upon the arrival of visitors. It is an amazing gig.
I love life. I love my wife and kids and grandkids and friends. I love doing what I do. In just about everything.
Ted The Great
Medicare or Medicaid cover hospice and the cost of medication for your palliative care.
There are four levels of care:
Home Care: Patient visitation and monitoring. Usually one to two times a week by a RN or CNA.
Continuous Home Care: When a nurse is required for a continuous period of time.
Respite Care: To provide in our residence a break from caregiving for loved ones.
General Inpatient Care: For severe pain or other symptoms that require a skilled nursing environment.
Hospices are both Not For Profit and For Profit.
Hospices can provide grief counseling for members of the family as part of their mission. We all think we are rocks but it is highly recommended. Death is a life changing event for all.
In Denver there is a sign in the nurses station: “Angels Gather Here”. They sure do!