First of all, I want to say that I’m not an expert on the end of life (EOL) process. That said, I have had the honor of being present with people shortly before, or as they passed from this life. I realize that idea creeps out many people, but to me, the experience is a sacred honor.
In my experience, with family, clients and family members of clients, having hospice as a part of a care plan, can make nearing the end of life’s journey as comfortable as is possible, physically, emotionally, socially, and spiritually for the patient and those close to them.
The sad fact is, however, although most people would prefer to die peacefully in their home or in a comfortable setting, often it is not the case. Hospice care is often called in too late in the process, if at all. Why is this so? Many times it’s because people do not understand the intended goals of hospice care. They think it is only for those who are on their death bed.
I recently experienced this with misconception with a family very dear to me. The man had been in a facility for some time. His health had clearly declined over the past year, yet he was up, out of bed, dressed, and moving about the facility in his wheelchair daily. He was having his dinner in the dining room regularly. On a Thursday night when his daughter went to see him, as she did faithfully, daily, he was not feeling well. The next day, Friday, in the late morning when she went to visit, he was unresponsive, though there was no obvious specific cause.
After asking his nurse about the change in his status, it was suggested that hospice services be called in. Having seen him just two days earlier taking dinner in the dining room, and being his typical-of-late self, she believed “it’s not time for that yet.” But she spoke with his doctor to ascertain his advice. The doctor agreed that it was time to set up hospice services, and it was arranged to meet with the hospice nurse the following morning to complete the paperwork.
The daughter called family members, her siblings, children, and grandchildren to come to be with the man later on Friday. He was unresponsive as they visited with him, and shared their love and care for him.
Saturday morning when she arrived to meet with the hospice nurse to complete the paperwork, he was somewhat responsive and did open his eyes some and said (he wanted to go) “home.” That was about it. He was unaware and unresponsive the rest of the day. The few visitors who came that afternoon talked to him as if he could hear them, hoping he could hear them, but there was no response. The daughter came back to visit and stayed late into the evening before going home to get some sleep, planning to return the next morning. Her father passed over night.
So, when IS it time to call in Hospice? And WHY?
In truth, Hospice is care for the sick, for people from the point at which their illness is diagnosed as terminal, and to the end of their life. Often the hospice is called in when it is gathered that the person has six months or so of life expectancy.
Frequently, however, a patient or family member is reluctant to ask for Hospice care because they don’t believe it’s time yet, or because they don’t want to give up on the patient. There is a misconception on both of these points.
In reality, Hospice care is best used as a treatment for those who are focused on quality of life when they know they are nearing the last year or six months of life. Hospice is a specialized care team that can assist the patient and the family to experience a better quality of life in the time that remains for the patient, and for the family, at the time of and after the passing.
Enough on this difficult and emotionally charged topic for Part 1. Perhaps this is a subject you don’t want to think about. Most of us would rather not. But, it is so important, in my opinion, to think about and talk about what is important to you, to your partner, to your parents. Difficult as it is, it is a comfort to know what your loved ones want, as best they can know at this point in their lives, for when it comes to nearing end of life (EOL). None of us wants to think that EOL may be near, but the reality is it could be near for any one of us. I’m not trying to be morbid, just real.
As difficult as it is at any time to have these types of conversations, it is better to have them before a crisis. More on this challenging topic next time. And in the meantime, enjoy those in your life who may be nearing the end of their journey. They will not always be with you. Love them now!