Dignified departures.

Many facilities are changing the face of death for their residents, making final exits as dignified as arrivals to aid bereavement 

Just as quality of life in long term care facilities has changed for the better, so, too, has quality of death. More and more facilities are recognizing death as an extension of life, an event deserving of as much attention, preparation, and participation by friends, family, and caregivers as, say, birth and marriage. As a result, new traditions are emerging that benefit not only the dearly departed, but that are facilitating bereavement for family, staff, and surviving residents.

"It used to be that when people died, they wound up on the loading docks," says Garth Brokaw, president of Fairport Baptist Homes (FBH), a 195-bed facility in Fairport, N.Y. Brokaw firmly believes that residents should make their final exits out the front door of the facility, just the way they arrived.

Fairport Baptist Homes rings a chime three times over the public address system to mark the passing of a resident, The resident's name is then stated as a signal that a simple memorial service will begin in the next few minutes at the deceased resident's bedside. All are invited to attend including staff, family members, volunteers, and other residents. The service is simple and dignified, taking perhaps 15 minutes. It may or may not be led by the chaplain, and is essentially a time for all who knew the resident to say goodbye.

A special cover is then laid over the body. Fairport Baptist Homes has one available, but it often uses something that the family requests or that the resident favored. "One woman who lived with us for a long time had a favorite bedspread, so that was used," explains Brokaw. "We try to be pretty open and pretty flexible about the whole situation."

Once the funeral director arrives, it is Fairport Baptist tradition to proceed with the covered body out the front door of the facility to the hearse. All--including family, residents, and staff--are encouraged to participate.

In addition, within about two days of a resident's passing, Fairport Baptist Homes holds a "neighborhood" or "household" memorial service. The FBH facility is structured as several neighborhoods, each made up of three or four households in which 9 or 10 residents live together. Each household has a kitchen complete with a large dining table and a pantry filled with healthy snacks. Residents can help themselves and eat together as a family. They also help with household chores, such as laundry and cooking, as their abilities permit.

Because of the living arrangement, residents often become as important to each other as relatives, and losing a beloved member of a community can be especially difficult. The neighborhood service, as Brokaw puts it, is "a time of remembrance." It provides an opportunity for these living companions and their caregivers to exchange special memories of the resident who passed on. Participants share favorite stories about the deceased, sing favorite songs, tell jokes, and celebrate the life of one no longer in their midst.

Brokaw explains that all of this is in addition to whatever the family chooses to do for a memorial service. "If the family desires, we will host a wake here at the facility, too, which is seldom done at long term care facilities."

Response to the entire program has been extremely positive. Family, friends, residents, and staff members alike feel that the process affirms the importance of each and every member of the FBH community, provides for a dignified departure, and supplies the much-needed opportunity for all to mourn before moving on.

Partnering with hospice care

Tom Burke, director of public relations for the American Health Care Association (MICA), says, "Many facilities, particularly those that are cutting edge, are placing greater emphasis on end-of-life care." In fact, some have joined with hospices to benefit from hospice personnel's expertise in the process of dying and in the comforting of people.

The Broadlawn Manor Nursing Care Center in Amityville, N.Y., a 320-bed facility with two day-care models and a separate additional adult home, started working with hospice care in 1994. Broadlawn currently has an 18-month contract with Good Samaritan Hospice. Theresa Cirrito, inservice coordinator, explains that a hospice nurse comes to the facility an average of three to five days per week, "but may be here up to seven days per week if someone is dying and the hospice nurse wants to monitor pain control."

Cirrito says that the hospice provides "great support to the staff and family. They follow up for 13 months with family members of those residents who have died." Because of the partnership, Broadlawn also has access to hospice clergy and to a hospice certified nurse assistant, who comes five days per week to help out with many of the "niceties" of care, as Cirrito puts it--like sitting and talking with residents, writing letters for them, or taking them out on the grounds.

Cirrito says Broadlawn will give family members of a resident who has begun the dying process a pamphlet called "Hard Choices for Loving People." The pamphlet reviews decisions that will need to be made regarding resuscitation, feeding tubes, and other life-sustaining measures. She says the facility practices the psychology of Erik Erickson regarding the eight stages of life. As such, staff members are trained to assist those who have begun the dying process with the task of working through the eighth stage--the psychological crisis of integrity versus despair--and in helping them learn how to die.

The toll on staff

The reality in most long term care facilities is that death is a frequent occurrence, which can be difficult for staff members and surviving residents. Staff and residents often form lasting friendships and become "surrogate family" to each other, says Burke. "It's unfortunate that in the past, staff and surviving residents have not been included in the grieving process."

Elisabeth Blischke, special care nurse at the Jewish Home and Care Center in Milwaukee, agrees. She says that some of the nurses in the past complained that they were "part of nursing, but not part of dying" and that exclusion from that process contributed to burnout.

Blischke explains that when a resident passes on, she or the facility's rabbi meets with staff members who were close to the resident either the day of the death or the following day. They'll gather together in the lounge area and talk about the resident who passed on. "As you listen to each person speak, you get a complete picture of who this person was," says Blischke. She says they sometimes hold a prayer service the day after a resident's death or they may wait to up to a year later.

Turnover hampers mourning

Eileen Chichin, PhD, RN, co-director of the Center on Ethics at the Jewish Home and Hospital in New York, says the industry standard of having to fill empty beds within a day or two of a resident dying "is distressing for staff and doesn't give staff members time to mourn." She and others on her team try to visit with staff members in the days following a resident's death to thank them for their work and assess how they are coping. "They get very attached," she says. "It's very hard on them and hardest on the nursing assistants because they do the most hands-on stuff."

Relief from volunteers

The Jewish Home and Care Center in Milwaukee, a 232-bed facility, has found that one way to relieve staff of some of the stress associated with facing death frequently is to involve community volunteers through a program called, "Caring Partners."

The Jewish Home and Care Center believes that every individual has the right to die with dignity and, if desired, in the company of a loving companion. For some nursing home residents, family is not willing or able to be with them in their final days and hours. Staffed by specially trained volunteers, Caring Partners provides companionship, round-the-clock if necessary, for residents nearing death. They facilitate the telling of life stories, reflections, and fears; promote relaxation through touch, sight, and sound; and help to ensure as peaceful and comfortable an exit to life as possible.

Blischke recalls one resident whose family resided in Texas. The family was not certain they could reach the facility before the resident's passing, so a Caring Partner stayed with the resident until the family arrived. Members of the Caring Partners team will also relieve family members who are present in a resident's final days or hours so that family members can get some rest or something to eat.

Rabbi Jeffrey Orkin, the facility's rabbi, explains that the program began in 1996 in response to what some staff members termed "elderly orphans"--residents who were dying alone. "When a woman's going to have a baby," reasons Orkin, "you have a labor coach or somebody there in the room with them. What about when a person dies?"

Orkin admits he was "very cynical" about whether Caring Partners would work at first, wondering where they would find people willing to spend time with the dying. He explains that the program began with about a half-dozen retired staff members who had had positive experiences with the deaths of their own loved ones and "who wanted to give something back."

"When we started, we expected that volunteers might come in to sit with a dying resident for an hour or two," says Orkin, "but many came and sat vigil all night." Some of the volunteers have prior experience such as with hospices or in the fields of social work or psychology, but others have no outside training whatsoever. In terms of in-house training, all of the Caring Partners volunteers attend an initial seminar on death and dying, which is repeated yearly. Volunteers also attend peer-support group meetings held every other month or so. These meetings, which are also open to people thinking of joining the program, are an opportunity for volunteers to discuss their experiences and offer each other support.

Blischke thinks that one of the things her facility does best is to "focus on making the death process part of the living process." She says, "Most of our people are here to stay until they die," so she tries to discover a resident's likes and dislikes from the moment he arrives. "Maybe they like the smell of roses or classical music. We try to make moments at death as much like the living moments of the individual as possible. We honor the person who is dying by doing that and make it easier for the family at the same time."

She recalls one female resident whose daughter was in her early twenties with young children. The daughter wanted nothing more than to celebrate her mother's birthday with her before she died, but the birthday was still three weeks away and it was not certain that her mom would live that long. So Blischke coordinated with the daughter and threw an early birthday bash in the lounge area. The celebration was complete with balloons and other decorations, a birthday cake, and party hats. Family, staff, and residents were invited to attend. Because the daughter said that her mom had always been her queen, the mother came out of her room for the celebration wearing a crown. She was escorted down the hallway lined on both sides with staff. "I don't know if she had such a wonderful celebration at any other time in her life," recalls Blischke. "I will never forget it. It was a celebration of life. When the celebration was over we took the mother back to her bed where she died shortly thereafter."

End-of-life care packages

LindenGrove in Waukesha, Wis., a 135-bed facility, has developed an award-winning approach to end-of-life care. They've created the Caring Kit, a convenient tool to enhance the environment of dying residents and bring comfort to them and their loved ones. The Caring Kit Program was named a "1999 innovation of the Year" by the American Association of Home and Services for the Aging (AAHSA), because of its creativity, proven benefits to residents, families, and staff, and its potential to benefit other organizations and facilities.

The elements of the Caring Kit facilitate sensory stimulation and connectedness. Contained in a duffel bag, the Kit includes items such as a nightlight to provide soothing lighting; a CD player and CDs so that visitors and the dying resident may listen to favorite music together; inspirational books and other reading material; coloring books, crayons, and Beanie Babies for children; scented lotions for gentle massages; scented oils for aromatherapy; and a journal in which family, friends, and staff may record special memories. Cindy Schultz, director of activities and volunteer coordinator at LindenGrove says of the Caring Kit, "We provide some basics, but family, friends, and staff who use the kit tailor it to the preferences of each resident."

The staff of LindenGrove has been trained to identify occasions when the Caring Kit could be especially useful to residents and their loved ones. Schultz says the kit helps residents and their loved ones connect at a potentially awkward time and gives loved ones and caregivers constructive things to do together instead of just biding time.

The kits are kept readily available at the four nursing stations in the facility and in the activities department so that anyone on staff can access one at any time. "They have been used by all disciplines in the facility from maintenance to nursing, as well as by friends and family. Even though they are never locked away, nothing has ever been missing from the kits," remarks Schultz.

She says that having the opportunity to spend a quiet moment with a special friend listening to music or recording a special thought in a journal helps staff members cope with death in a positive manner. "When you are working day-in and day-out taking care of residents, you can't be heartless enough to see somebody pass away, take care of that body, and then get that room ready for the next person without being able to vent some of your feelings." As a result, the facility holds unit meetings, informal gatherings in which staff members get together and talk about their feelings. A spiritual liaison may or may not be called in to participate.

In addition, LindenGrove holds a "Celebration of Life" service every two to three months. Family members of residents who have died in the previous few months are invited back to the facility to attend the service with residents and staff, to celebrate the lives of those residents who have passed on.

Effecting change in Kentucky and beyond

In 1997, the Institute of Medicine challenged the nation to improve end-of-life care and to provide more adequate support to its families. Kentucky was among the first states to step up to the plate.

In January 1999, the research and education arm of the Kentucky Hospital Association was awarded a $74,000 planning grant from the Robert Wood Johnson Foundation to develop a statewide coalition to address care for Kentucky's dying. The coalition, called "Kentuckians for Compassionate Care," has at its heart the mission of facilitating an end-of-life process that is less painful; more comfortable physically, emotionally, and spiritually; and more dignified for patients, families, caregivers, and communities.

The plan that the coalition developed is called "Journey's End--A Kentucky Partnership for Quality End-of-Life Care." It was eventually awarded a $376,000 grant to fund its initiatives over a three-year period.

The major project at the moment, according to Todd Marsh, administrator of Regency Health Care Center in Louisville, Ky., and member of the coalition, is a long term care pilot project involving six facilities including Regency Health Care Center to test the impact of end-of-life education and changes in institutional policy on pain management and advance care planning. It will look at how the administration of certain medications (e.g., opiates) and how transfers to acute-care facilities change with education about end-of-life issues. Currently, the project is still in the planning stages. Once begun, it should require about 18 months to complete.

Marsh says that at the conclusion of the pilot project, the coalition hopes to hold a statewide long term care summit to talk about the project's successes and failures and to make recommendations to policy makers and legislators. He says the goal is simple: "To provide better end-of-life care in long term care facilities and hospitals."

Lisa Maher is a Long Island, N.Y. freelance writer.