Local Professionals Hope To Dispel Myths About Hospice

By John Voket

It may be an overused cliché, but life insurance companies often say that a policy provides peace of mind for the insured, and ensures that benefits continue for surviving loved ones long after the client is gone. It is unfortunate that Americans have not adopted the same type of attitude about hospice.

That end of life institution provides virtually the same thing: peace of mind for the client, and continuing benefits for their survivors long after their loved one is gone.

When it comes to critical medical diagnoses, Americans and their medical providers tend to favor a “never say die” attitude. But denying or avoiding the inevitable often ends up depriving both the patient and his or her survivors the kind of comprehensive end of life benefits hospice professionals have been espousing for decades.

Merriam-Webster Medical Dictionary defines hospice as a facility or program designed to provide a caring environment for supplying the physical and emotional needs of the terminally ill and their families. When speaking with professionals from the Newtown area, however, the world of hospice takes on a positive, even celebratory aura.

Newtown resident Maureen Moore is executive director of the Regional Hospice of Western Connecticut. In a recent interview, she explained that one of the best things about hospice is that its programs provide a means for its clients to make peace with themselves as well as their network of family and acquaintances, while supporting everyone involved through the final stages of a loved one’s life.

“Hospice is a team approach that not only addresses the client’s symptoms and pain management, but also provides components of spiritual and bereavement care, education, respite, and social contacts for any patient with a life-limiting illness,” Ms Moore said.

Many of the hospice professionals who spoke to Health Monitor shared Ms Moore’s desire to debunk certain myths and misconceptions about hospice. One commonly held misconception is that hospice is best suited for individuals diagnosed with cancer. In her service area, which encompasses Bethel, Brookfield, Danbury, New Fairfield, New Milford, Newtown, Redding, Ridgefield, Southbury, and Wilton, Ms Moore is pleased to see that myth slowly fading.

“Last year was the first year we saw a significant change in the populations utilizing our services from cancer to those with dementia diagnoses like Alzheimer’s, kidney failure, heart disease, and other, noncancer illnesses,” she said.

Ms Moore pointed out another myth that makes it harder for organizations like hers to provide the level of support typically required by patients and families: that hospice is only for the final days of life.

“The best time to introduce the subject of hospice is when the patient and their family is first learning of a potentially terminal diagnosis,” Ms Moore said. “But in many cases the subject of hospice care doesn’t even come up until the patient is in their last two or three days.

“We are very challenged in the United States, and in recent years we’re finding the length of hospice stays are getting shorter when they should be getting longer,” she said. “Today, more than 40 percent of those seeking hospice support are doing so in the final seven days of life or less.”

She said that trend is somewhat expanded for clients of the Regional Hospice of Western Connecticut.

“Last year, our average length of hospice stay was 38 days,” she said.

In 2003, the Regional Hospice of Western Connecticut raised enough funds to give back more than $360,000 in no-cost services to the communities they serve. Besides direct care, hospice staff and volunteers provided hundreds of end-of-life consultations, outreach and educational programs, along with bereavement counseling for adults and children.

In Newtown, a substantial annual contribution to that effort comes from a community breakfast held at the Fireside Inn in June. Newtown resident Janet Hovious has co-chaired the event for seven of the 16 years the event has taken place.

“In Newtown, we not only help to fund the regional efforts, we’re also inspired by our nine family support volunteers who come from right here in the community,” she said. “These special people come whenever they are called to provide assistance and respite for others in town who are caring for a loved one at home.”

Ms Hovious said that thanks to the generous outpouring from the community, her 2004 Hospice Breakfast was the best ever, generating almost $18,000 for the cause.

Another Newtown resident, Debbie DeLollis, said she sees the benefits of that generosity from the recipient’s point of view as an assistant facilitator for children’s bereavement support groups heal at Healing Hearts in neighboring Danbury.

“Most of the children we see come in following referrals from hospitals or even the school systems,” she said. “In my three years I’ve worked with several age groups, with children who have lost parents and siblings.”

Ms DeLollis said she typically engages younger children in crafts and projects where they can begin to express their grief creatively.

“It’s hard for the little ones to express their grief in words,” she said. “While older children and teens are much more in touch with their feelings, and are able to express themselves through conversations.”

She said while many of the older youths that come to the hospice bereavement groups tend to feel awkward at first, once they begin to interact with peers, she can actually see the healing process working.

“These groups are open ended, so if the child is older, we usually leave it up to them to decide how often they want to come in,” Ms DeLollis said. “They can even seek support if their family wasn’t engaged with hospice at the time of their loved one’s death.”

According to Ms DeLollis, it is programs like hers that keep the dozens of volunteers in each community engaged with the hospice system.

“People shouldn’t think hospice is just there to administer to the person who is dying. But I can say from personal experience that hospice is for everyone in the family, before and after a death experience,” she said.

At Ashlar of Newtown, a Masonicare System facility, the organization’s hospice services are administered through members of the Hospice and Palliative Care component of the Connecticut VNA. During a recent team meeting, VNA and Hospice social worker Paul Truby discussed other stumbling blocks that tend to confuse or initially delay families from seeking hospice support.

“With 27 hospice programs just in Connecticut, it may become very confusing for family members who have just learned of an end-of-life diagnosis,” he said. “I’ve learned that for so many people, when they hear about this wide variety of hospice services, they think we’re all part of the same agency.”

He advises individuals to learn about the various hospice services through medical professionals, hospitals, or institutional care facilities where patients are receiving services.

“It’s important that loved ones and caregivers understand the value of specific options that may be available through particular hospice providers,” Mr Truby said. “But more importantly, to understand that generally, all hospice systems focus on the quality of life for clients and their families, their comfort, their connections; we all try to help families find meaning in the process and help them make the most of the time remaining.”

Mr Truby also supported the concept of engaging hospice as early as possible following a terminal diagnosis, even if the patient is given a substantial amount of time to put his or her affairs in order.

“Too many people come on very late in the process, but we’ve all had situations where patients remain in hospice for years,” he said. “On the other hand, some even survive their illness and graduate from hospice to survive for many more years.”

Mr Truby said that families coming into the realm of hospice with only a few days left cannot possibly receive the comprehensive benefits of hospice care.

“If it’s only a matter of days, families aren’t getting the benefits of our spiritual and emotional support, or able to access our resources for planning, or even financial assistance.”

Masonicare Hospice Clinical supervisor Judi David reiterated that hospice is also a valuable resource for the days and months after a loved one has passed away.

“In the final days of course, pain and symptom management are very critical to the patient, but at the same time we’re dealing with issues of the family’s coping,” she said. “Our social workers and therapy staff help survivors deal with the change in status that may be occurring within the family in those final days. And they may continue providing support for up to 13 months after the person dies.”

Ms Davis said the case for after-death involvement with skilled hospice bereavement support professionals and volunteers is more than anecdotal.

“In a recent Yale University study of 200 families experiencing the death of a close family member, researchers found a significant difference in the mental health status between those who sought and received bereavement support, and those who did not.

“This was another indicator that certain psychological issues can be avoided or minimized significantly through comprehensive hospice support,” she said.

To learn about various volunteer opportunities involving both direct patient support, as well as clerical, fundraising, and other special noncontact projects through the Masonicare Hospice system, contact Deb Richards at 888-633-6664, or click on www.masonicare.org/hospice for volunteer and other information about hospice services.

To learn more about services and volunteer opportunities available through the Regional Hospice of Western Connecticut, call 797-1685 or visit www.Danbury.org/hospice.