My sister in law died earlier this week after a long illness. In the end she was in the care of hospice. As I discussed this with her kids it came to mind how little we know of this wonderful mission. Yet almost a million and a half people a year avail themselves of this part of medicine that is rarely talked about.
As some of you know I have worked in hospice as a volunteer for over five years in the Denver area. When I mention that to people they cringe and say,”I could never do that.” Maybe yes, maybe no. The fact is I am not an oddity, at least not in this. There are almost 500,000 volunteers who share with me a special calling I guess.To me it is just a part of life.
The derivation of the word hospice is from the Lain for visitor or host. In the early 1100’s it became known as a way station or inn for tired or wounded travelers. The present day institution is the brain child of a British nurse, Dame Cecilia Saunders. The basis is simple. You treat the person not the disease. In order to gain access you have to have a written document from a medical doctor saying you have six months or less to live. You state you will not ask for any extraordinary procedures to prolong life. It is that simple.
We are not too good talking about death. My old buddy John Horan, aka The Body Snatcher, and I have had several lengthy talks about this. John is a funeral director extraordinaire in Denver as well as my cigar smoking and drinking buddy. . The best answer seems twofold. First our medical industry has taught us that they can cure you of anything.
That might be true but no one discusses what you might be like at the end of the treatment. In our era of specialization the surgeon is just supposed to get rid of whatever. Then a cadre of others from physiotherapists to psychotherapists, dietitians, pulmonologists fall in line. We have done a lot to have case mangers et al but the myriad of professionals sometimes seems quit daunting and even dehumanizing.
The second part is that we are not exposed to death as in days of old. People live longer. When I was in grammar and high school parents or siblings died. You went to Gallagher’s funeral home for a wake. You could have been 8 or 18. It is what you did. Not today.
Hospice tries to comfort you in every way possible from physical to psychological to spiritual. Palliative care tries to ease the pain. We work with the care givers to assuage any fears they might have and yes, give them a break. In totally crazy way, people have a better quality of life and in many cases survive longer but in a better fashion. I know that sounds like a sales pitch but when all involved feel some sense of control over the process it really does bring relief.
When I talk with patients I don’t have any specific agenda but am just there to talk…or not. For once in my life it is not in way shape or fashion about me. No one pats you on the back because they have too much else on their minds. You do what is asked but I tell the family, the patient and no one else calls the shots.
I happened upon a woman patient one day. She had a legal pad and I asked what she was doing? She replied, “I am planning my funeral” I said “That’s cool, do you want to talk about it?” She then related in a very upbeat way how she wanted it to come off with a few exceptions. When I asked why the problem, she said her daughter told here she either couldn’t or didn’t want her to do it that way. Really? I said, “Honey you do what you damn well please”. She said,”I like you” At least some one does.
I won’t bore you with any more stories but if I did they would be ones of an incredible connection with another human being. I am always in awe they trust me to that extent. For the most part they know exactly what is going on and are comfortable with it. That is not always true for the family. The most common concern is of what will it be like when the time comes? Every one is different.
I have been there several times at the time of death. All I can tell you is that is genuinely peaceful. I remember when my son Scott was born too many years ago. I wanted to be in the delivery room which was taboo back then.The Ob/Gyn wanted to meet me to make sure I was not going to go to my knees at the big moment.
In a wonderful way he told me there are five people in the room and then there are six. I thought about that during one of my patient visits. There are six in the room and then there are five. It is the ultimate demonstration of the cycle of life. Don’t know why people don’t get it? I don’t know anyone who has beat the rap though of course we will always try.
Two thirds of hospice patients choose to die at home. I get that but residences also offer an inordinate amount of flexibility. You want to bring pictures or furniture? No problem. Your dog or cat? Can be arranged. No visiting hours. we are always open! You want an ice cream sundae at three in the morning? At your service. you can even have a drink or tow.
That does remind me of one last story. A patient wanted ice cream. I said, “With Chocolate Sauce?” Why not! I threw in a couple of chocolate chip cookies. As I served him I said with a wink,”You know all this sugar isn’t good for you.” We both laughed heartily and it was as it should be. I am irreverent to the end. It is life.
Ted The Great.
The cost of in resident hospice care ranges from a little over $225 a day to $450 for extreme care. Just the basic part of a day in the hospital can range anywhere from $1500-5000. Intensive care is a whole other story.
At the beginning most hospices were not for profit. Of course the entrepeneurs of the world saw an opportunity. Today there are many both large and small. Unfortunately many have questionable practices. One of the largest,VITAS just paid $75 million to settle a question of overcharging. They of course did so without admitting guilt.
The average stay in hospice is 17 days. That is really quite sad because the majority of families I have worked with said they waited too long. There is a sense of giving up and guilt that really shouldn’t be there. We had one patient who was with us for over a year.
Sorry about your loss, Ted. This was a beautiful column.