November is National Hospice month. How many years have we been recognizing this special time? We promote in our communities the services hospice provides, get newspapers to write articles about how great hospice is, honor our staff and volunteers, and then Thanksgiving comes, Black Friday shopping comes, November is over and we go back to our usual.
What really have we accomplished in this month? Have we educated the community more thoroughly than with our regular Senior Center or church presentations that we do on a regular basis? Have we reached more of the community or physicians about when to refer to hospice? Have we opened the door to more education about the signs of approaching death? Have we reduced the fear and misinformation that is associated with bringing a person onto hospice, with narcotic use or addressed the belief that hospice kills, that our loved one will die sooner if on the hospice program?
I’ve been involved in the hospice philosophy of care since it arrived to this country from England. I was providing end of life care for patient’s and families when no one could even pronounce the word, before Medicare began reimbursing for services, when there was no wage an hour to say how many hours a nurse or social worker could work, when, for the staff, working was a avocation. I worked for the hospice that had a stash of hospital beds, walkers and wheelchairs in a garage that we washed and delivered to patient’s homes. We used mayonnaise jars for urinals and had a charity group make bed pads from newspapers and sewn together sheets. I spent hours at the bedside as death approached. Slept on the sofa or chair by the bed in many a home. My goal was to be at the bedside with the patient and the family and significant others at the moment of death. My work was to neutralize the fear dying presents and to be there. That was the hospice I worked in.
I was one hospice of many that sprung up through this country in the ’70 and ’80’s. As an old commercial used to say “We’ve come a long way, baby”. We have Medicare regulations that insures consistency of care. We now have service reimbursement. Our employees are protected with wage an hour, overtime payment, health insurance, and a reasonable salary. We have gone from literally knowing nothing about how to provide end of life care to teaching palliative and terminal care in our nursing and medical schools, even universities help us with masters degrees and doctorates in the areas of end of life.
Here is my question - with all the growth we have made from, let’s say the mid 1970s, when the hospice concept was introduced why are people hesitant to accept hospice services? Why are physicians still not referring to hospice until days before death. Why do we feel lucky if we get a referral a few weeks before death occurs instead of several months. Why do people now believe that hospice kills their people? Why are most families alone at the moment of death?
We’ve had over 40 years of providing end of life care to the community. And yes, it is acknowledgment of our work that there is a national Hospice month but from where I stand we still have a lot of community education and healthcare professional education to provide.
All this said I want to close with a thank you and a tribute to all the employees, CNA, chaplains, social workers, nurses, volunteers and yes, doctors who tirelessly work for hospices. People who are living their dream of working in end of life. People who don’t just see their job as work but as their avocation. You are one’s we honor this month. You are the ones who give from your hearts to provide guidance, to neutralize fear, to make a difference in people’s lives and deaths. I salute you!
Something More About... Hospice~ What Have We Accomplished?
I always go back to the basics, families need to know the signs of approaching death. Knowledge reduces fear. If nurses, social workers, chaplains, EOL doulas... can educate the family about what they can expect when their loved one is unfixable, the dying experience will be better for everyone. It could even be sacred.