It is difficult to know exactly where to start with sharing end of life. There are several directions that could be taken, but I think I will start early in the postings with my thoughts on hospice and care for those facing end of life.
Sitting in a doctor’s office or in a hospital room and being told you or someone you love has an illness for which there is no cure is a moment that changes your life forever. You can never go back to the moment before you knew about the illness. Life will never be the same again for anyone in your family.
It is extremely difficult to accept that fact that someone has reached the point when there is no cure and death will come. Often by that time, families are exhausted physically, emotionally, and spiritually. Families may be asked to consider hospice. Fear can come just from the word “hospice.” Doesn’t that mean that the patient and the family are asked to say it’s “okay” that a person is going to die? Doesn’t that mean giving in, no more fighting the disease? And, doesn’t giving in cause death?
It needs to be clear about the questions that hospice asks. Hospice doesn’t ask “do you want to die” or “is it okay to let you die?” Hospice asks the questions “how do you want to die” and “where do you want to die?” As hard as it is to face and to accept, it is the disease that will cause the person to die. Medical science has no answers. No one can change it. If it could be changed, it would be.
The hospice team members help the patient and family decide where and how death will come. They help the patient and family decide how to live the last months or days of life. They try to help the patient maintain the highest quality of life possible during those last days.
Hospice is not a place where people are sent to die so they won’t have to be aware of what is happening. It is a way of providing end of life care whether that is at home, in a long term care setting, or, at times, in a hospital. During this time, the focus is on comfort, pain control, grief, and support for the family. Patients and families are kept informed so that they can make choices about how they want to spend the time remaining in the most meaningful way to them.
Hospice is not a substitute for the family or for the family’s care. The hospice team doesn’t want to come in and take over the family. It’s a family oriented program in which families are helped to know how to care for their loved one. Team members are there to provide comfort care for the dying one, emotional and spiritual support to the family, and to give a listening ear to breaking hearts
Hospice gives families and friends the opportunity to say goodbye. Death is not hastened, but it is recognized that when the time comes that the body can no longer heal itself, and when no amount of artificial feeding or IV fluid will keep someone alive, the disease will win. If one doesn’t die suddenly, then how a person is able to live his/her last days can affect the future of those still living. The concern is about the patient, but also about those who must, somehow, go on living.
Hospice workers are often asked how they can do this job. How can one work around such grief? It is because of the realization that even though the outcome can’t be changed, because the disease is determining that, the inevitable last days can be softened for the dying one and for the family. Often team members are told that if it is possible to have a “good death,” they have provided that for a grieving family and friends.
Hospice care is not always perfect. The questions of loss can’t all be answered. Those still living can be left bewildered and broken by the experience of death. But, it is hoped that knowing others really do care can give a small measure of hope in the face of such loss.
