[This text was originally published in AREA Chicago #12 in August 2012]
Recently, Kate, the Duchess of Cambridge, wife of Prince William, made her first public appearance and wrote her own speech for the occasion. In England, it was, of course, a major event. It was also a major event for the parents and relatives of children suffering from terminal illnesses. The occasion was the opening of the Port City of East Anglia’s Children’s Hospice.
In England, due to the government being in charge of medicine, hospice has become an ingrained part of society. The longstanding English perspective of embracing hospice differs from that in the United States, as does the perspective of individuals as they approach the end of their lives. Many people I have encountered in the U.S. don’t care to consider death as inevitable and defer speaking of it. I have often observed when people receive a terminal diagnosis, their friends and relatives either do not visit them, or do so infrequently. However, those who have had hospice touch their lives through a friend or relative, find themselves unafraid and more prepared when the time is appropriate.
I spent fifteen years as a hospice volunteer in both in-hospital hospice units and as a home hospice visiting volunteer. Hospice volunteers assume all general nursing care duties, which could include everything from making a bed to helping patients toilet themselves. Volunteers often spend their time talking with a patient, just sitting while the patient rests or reading to them. Basically, a volunteer fulfills the patient’s needs as possible to create a meaningful experience at this time of transition. Volunteers also help family members to relax and be more comfortable at this point in their loved one’s life.
One of the hospice volunteers I recall was a very giving yet very timid person. She was of concern because some hospice patients have different needs and require on-the-spot decision making. I needn’t have worried. Every hospital has a ‘no smoking’ on the premises policy. When this volunteer’s bedridden patient wanted a cigarette, she didn’t just leave it at “I’m sorry it’s against hospital policy.” What she did is made timid people proud. She locked the door and opened the windows. She moved the bed as close to the window as possible and retrieved a cigarette and lighter from the patient’s belongings. She then lit the cigarette and handed it to the patient with a “Here you go.”
Hospice patients find that life has measurements which are either calculated in physical or spiritual dimensions. I’ve seen patients look at life as leaving the only existence they’ve known and heading into a fearsome unknown. I’ve been with other patients who find solace in that very same unknown because it is an unknown that they’ve heard about throughout their lives. Those who see life as a spiritual journey, see a continuum rather than an end. This makes their passing a difficult time more so for those they leave behind than for themselves.
I have known a hospice patient who asked me to pray for her—to die. She was suffering from severe diabetes and both of her legs had been amputated below her knees. When I saw her one evening she laughed as I noticed the eighteen rings on her fingers. Her comment was hilarious as she told me she only had eight fingers but she’d be damned if she’d let her beautiful rings sit in a dark jewelry box. By the way, I did pray for her wish which was fulfilled two days later.
When my full-time job as a hospice representative required me to be the first contact from a hospice program, I met with a patient who was expected to soon pass away due to brain cancer. As I entered the room I was surprised to see ten people waiting for me. The group included the patient’s wife and children and their spouses and a couple of their children. I answered any questions the group had for me and gave them as much information as possible. When I left, I didn’t feel my information completely satisfied them. The true problem for me was that the patient hadn’t been able to ask his questions because of the assembled group of loved ones. Fortunately, following the weekend, I went to see the patient again. I found him sitting alone with his wife in his room. He was now able to talk freely and his first statement was that he was sad over leaving this life. As diplomatically as possible we discussed the fact that he’d lived into his late 70’s, which was a great accomplishment in itself, and he obviously had a great life which he lived in a way that gave him such a wonderful family. As it turned out the patient passed away the next day and the nurse in charge told me he was in much better spirits.
The length of time patients spend in hospice is dependent on how familiar the patient or the family is with hospice. I’ve had numerous experiences with families that consider hospice as something to be used only in the last few days of life to make one’s worldly exit more comfortable. In truth, hospice can be called upon immediately when a terminal illness is diagnosed. Contacting hospice at that time allows for information gathering of what services are available. There are many patients who go into hospice and then go home and become in-patient only when they are down to a few days of life. Hospice services can provide a visiting nurse for patients who are not ill enough to be bedridden but not strong enough to lead an active life. When hospice service is actually needed, a complete medical set-up can be arranged in the home. This could include a visiting nurse, hospital bed, wheelchair, adult diapers and other medical necessities. My feeling has always been that it is better to seek information on a resource before finding myself in a position of being in desperate need. Looking at hospice as a comforting assist at a time in life when it can be most meaningful, is taking hospice at its fullest potential.
Visiting or meeting with someone who is terminally ill or a hospice patient is a difficult situation. After many years as a volunteer, I came to the conclusion that topics that can be approved by the patient and asked by the visitor might improve the situation making everyone more comfortable.
Visitor to Patient
Is it okay to talk about? . . .
Past good times
How I’ll miss him/her
What I’d like to do to
Helping their family
Patient to Visitor
It’s okay to talk about . . .
Past good times
Remember me to . . .
Tell . . . I said . . .
Meaning of life
Meaning of life
Please call and ask . . .
–to visit me
Do this one thing for me . . .
. . . to my family for me