All About Multiple Sclerosis

More MS news articles for May 2004

Hospice conference set for Saturday in Belfast

May 6, 2004
Denise Goodman
Belfast Village Soup Times

When Mary Dutch talks—or rather listens—to the dying and bereaved, she may bring a special insight to the conversation.

"There have been people," she says, "with whom I've shared my innermost feelings about what I deal with having multiple sclerosis. They can't handle that level of intimacy. I think it frightens them. They want to see you in a certain light and if something happens that shows you in another light, they're uncomfortable."

But it's that level of intimacy with which Hospice volunteers must develop some comfort, according to Dutch, a veteran volunteer who will co-lead a workshop "What to Say to the Dying or Bereaved" Saturday during the third annual Maine Hospice Education Day in Belfast.

For the first time, the state wide gathering of Hospice workers will offer 19 afternoon sessions open to the public on subjects ranging from living with AIDS and Alzheimer's care to new pain management techniques. The public workshops begin at 1 p.m. at the National Theatre Workshop of the Handicapped.

Dutch acknowledges the discomfort many, if not most, people experience when confronted with an issue relating to death. "When you walk down the street and see someone who just lost a loved one, you don't know what to say so you don't say anything or you cross the street (to avoid the situation)."

People fear, she adds, saying something about a recent death will cause a grieving person to relive the pain. "But the pain is there. They just want to talk about it."

Whether the encounter is with someone with a terminal illness or experiencing grief, Dutch advises people to ask, "'Do you want to talk about it?' and then sit patiently and listen to the fears and concerns they have. That's a real gift you can give to a dying patient, to be comfortable enough to let them talk."

And especially for those who have lost a loved one, she adds, "They just want to tell the story and tell it and tell it and tell it. You just need to listen."

But listening—at least doing it well—isn't all that simple, she and other Hospice volunteers admit. Most people aren't good listeners, Dutch says, because they are either thinking about how they are going to respond, are distracted or are reacting personally to what is being said.

"Until Hospice, I never really learned how to listen to anybody," Dale Kuhnert, another long-term volunteer, confesses. "I'm a great talker, but I never knew enough to keep my mouth shut," the 15-year veteran Hospice volunteer adds.

The Hospice volunteer's listening skills are especially important, Dutch says, because the dying patients and the patients' caregivers may be trying to protect each other. "They (patients) may not want to share their fears and concerns with a loved one because they don't want to put more stress on the loved one who already is stressed. The same goes for caretakers who may not want to share their fears and concerns with the patient," she explains.

The workshop Dutch and Alfred Goodale will lead will address what not to say to the dying. In a handout to participants, they advise, "Avoid agreeing with them (patients) or refuting what they say."

Dutch says, for example, a patient may say to a Hospice volunteer or a friend or relative, "I think I'm getting better, don't you?" If it's obvious the patient is near the end or the prognosis is not good, the visitor might be tempted to refute that observation or, more likely, just go along with it. "You don't want to give them false hope." It's better, she says, to respond by asking, "What does your doctor say?"

Hospice volunteers are required to take an initial 30 hours of training and then complete an additional eight hours of training each year. Some of that initial training is designed to help volunteers deal with fear of their own mortality.

"Taking the Hospice training helps you be comfortable with the fact that at some point you are going to die. It helps you prioritize," Dutch says.

"We hide from death so much." Kuhnert notes. "The boomer generation is one of the first to get well into adulthood before they experience the death of a loved one." He points out that for earlier generations, especially in rural areas, death was a reality because more children died and life expectancy was shorter so that many young people experienced the death of a grandparent.

"Now, it's all sort of hidden from sight or on television," Kuhnert says. "People don't slowly die on television. They just die instantly."
Many terminal patients are concerned about being in pain, a subject Alelia Hilt-Lash will address in another Saturday afternoon workshop on "Managing Pain: New Methods and Old Myths."

A registered nurse and president of the board of Hospice Volunteers of Waldo County, Hilt-Lash says one of the most prevalent myths is that patients will become addicted to pain killers. "The literature shows that less than one in 1,000 becomes addicted when properly using pain medications."

Another myth, she says, is "if I take pain medication now and my disease gets worse there won't be anything to help me." While people do develop a tolerance to opiodes, she counters, these drugs have no dosage ceiling. "You can continue to strengthen the dose," she explains. "You can also look at changing how you take the medication." And, she adds, doctors can explore various ways of administering a drug so, for example, a medicinal patch might work for a patient unable to swallow pills.

"The focus is on relieving the pain while minimizing the side effects of the pain management which means people can remain awake and interact with their family," Hilt-Lash notes, with minimal nausea or constipation that are common painkiller side effects. "We're walking a fine line so the pain is controlled, but you still have a quality of life."

Still another cultural hurdle to pain management, she adds, "is the stoicism of the Maine population as a whole."

Hilt-Lash is employed with Androscoggin Home Care and Hospice which is developing the first Hospice house in Maine, a place where people can go when their pain can't be managed at home, stay for a few days and return home when their pain is under control.

Waldo County General Hospital has a zero pain program, Kuhnert points out. He and Hilt-Lash say that means that everyone—from doctors and nurses to the cleaning staff—is required to be attentive to a patient's comfort level and to alert medical staff when they observe someone in pain.

More than 90 percent of all pain can be managed, Kuhnert says, and having the two-bed Hospice unit in the hospital has helped sensitize the entire hospital staff to pain issues. "For a while there, if you were terminal, you'd get every comfort. But if you just had a broken leg, God help you. Now the medical profession is finding that people heal better if they're comfortable."

Dutch and Kuhnert acknowledge they sometimes are asked why they volunteer to deal with death and grief. "Every volunteer has a different answer," Kuhnert responds. "It's fascinating to meet the range of people you meet through Hospice. It's an honor to be useful...

"It's not always sad. We're dealing with people who are living. It's just that their time is limited," he continues. "I've had people who, just hours before their death, were laughing or talking about the Red Sox. We believe in death with dignity. You shouldn't have to go out in agony."

Dutch agrees, "It's not grief all the time. There's humor and laughter and love."

Both also say their volunteer efforts have influenced their own outlooks. "I think it's brought me a sense of peace," Dutch notes. "I know I'm going to die. I want to make the days between now and then something of value."

And Kuhnert observes, "If you're dealing with people who are at the end of their lives, it puts your life in perspective. It's not bad to be reminded that we are mortal. You are (also) being reminded that you are alive. It makes me value what I have even more."

The two volunteers also say these statewide education days are important, especially because volunteers usually are dealing one-on-one with patients, caregivers or the bereaved and don't often have an opportunity to compare notes and experiences. The annual education day, Dutch says, offers "networking—to sit with other volunteers who can provide insight into issues you might have."

The daylong program, Kuhnert says, is "an intensive course. You really get to know your own feelings and you get to know how others think."

Opening the afternoon workshops to everyone is an effort to share with the public a variety of issues around death and grief, but Connie Woitowitz, director of volunteers for Hospice Volunteers of Waldo County, hopes it will motivate some to join the organization.

"Last year alone we increased our caseload 50 percent," Woitowitz reports, from 100 annual cases to 150. "Our volunteers are spread pretty thin." Although the organization prefers to assign two volunteers to each case, she says, with only 75 active volunteers that is no longer possible in many instances.

The organization has been getting calls from companies in the area, she notes, for help when a beloved supervisor dies.

Hospice work can benefit volunteers' personal lives, Dutch notes.

"I think everyone has that ability," she says, to engage in the kind of intimate conversations the dying and bereaved seek, and participation in Hospice hones those skills. As a result, she adds, volunteers may be better able to engage in similarly intimate conversations with their own loved ones. "You can't help but be a better spouse, a better parent."

Maine Hospice Education Day

Two workshop sessions—at 1 p.m. and 2:30 p.m. Saturday—are open to the general public who may choose from the following:

•Advanced Directives
•Crisis and Grief in the Schools
•Bereavement Support
•Hospice Utilization in Maine: Analysis and Action
•Living with AIDS
•My Friend's Place: An Approach to Alzheimer's Care
•Support for Grieving Partners
•Tell Me About Hospice
•What to Say to the Dying or Bereaved
•Alzheimer's Disease as a Terminal Illness
•Demystifying Medicare and Other Hospice Benefits
•Two Stores: Perspectives on Grieving Parents and Their Children
•The Importance of Planning an Effective Funeral
•Managing Pain: New Methods and Old Myths
•Massage Therapy: An Integrative Power of Touch for Clients, Family and Volunteers
•Setting Boundaries: Self-Care for Volunteers
•Nuggets from the Hospice Nurse
•Sharing the World of Hospice
•Techniques We've Tried: Helping the Hospice Patient

Copyright © 2004, Belfast Village Soup Times