Butterflies are Free: One Nursing Home’s End

Once we began to examine our care and services for the dying resident, though, we quickly realized that what we provided for the dying resident wasn't any different from what we provided for the nondyi ng. So on September 17, 2002, we began a continuous quality improvement (CQI) project to develop a quality end- of-life program. We named the program "Butterflies are Free" (the butterfly reference signifying "moving from o ne life to another"). This CQI project continued for nearly two years until July 20, 2004. Although the project is no longer active as a CQI exercise, we continue to make improvements to it. The Butterflies are Free progra m has become integrated into our facility and is a major part of our culture of caring.

The Problem
Following the realization in 2002 that a wonderful oppor tunity for program development existed, we began tapping into every resource we could find. The Executive Direc tor attended an end-of-life seminar at the Florida Health Care Association's annual conference. The Director of Nursing began meeting with our local Hospice. The Social Worker began looking online for end-of-life resources . We found the End-of-Life Nursing Education Consortium (ELNEC) Web site (www.aacn.nche.edu/elnec), the California Coalition for Compassionate Care (CCCC) (www.finalchoices.calhealth.org), and Elisabeth Küble r-Ross's "stages of grieving" to be particularly helpful. Using the CCCC's "Assessing Your Facility's Policy an d Practice of End-of-Life," we completed a facility self-assessment to determine how we felt about providing go od end-of-life practices. We identified strengths, weaknesses, and opportunities for improvement, and establish ed baseline data with which we would measure our progress.

We also began to review the needs of our resi dents, their families, and our associates to determine what services were needed at the end of life. Initial is sues identified were:

• Residents and families had major concerns regarding residents' comfort at the end of life.
• Families didn't know what to expect from the dying process and therefore were relucta nt to accept their loved ones' approaching deaths.
• Concerns were expressed about new faces and new phil osophies being introduced to residents at the end of life when Hospice staff arrived to provide care. We are fu lly staffed, with no agency personnel, and we staff on a permanent assignment basis. Because our staff and resi dents know each other so well, this has created a family culture in our facility-and new faces are new f aces.
• Financial strain on residents and their families were posed by end-of-life programs already opera ting in the community.
• Our associates felt just as uncomfortable with the dying process as the families because of a lack of education and experience.

We assembled an interdisciplinary team, including the Exec utive Director, Director of Nursing, Social Services Director, Financial Director, Activity Director, and volun teer representatives from nursing, dietary, and housekeeping. Three family members, representing various faiths , were also involved in the early planning stages.

Planning
Based on the above information, the team developed the following goals: "Establish an end-of-lif e program that maintains comfort and dignity for the resident, involving the family, residents, and staff in th e plan of care at their personal level of comfort. The end-of-life program should put no financial strain on th e family." The team established the following objectives to meet the goals:

The team de termined that data would be collected for the following indicators:

• use of pain medication pri or to death
• time and shift of death
• witnessed versus unwitnessed deaths
• out-of-pocket e xpenses for families and residents
• family concerns and comments

Teams were developed to initiate di fferent components of the program:

Education Team: Executive Director, Director of Nursing, Staff Development Coordinator, Social Workers, Hospice, family members.

• The Staff Development Coordi nator secured training resources from Hospice, ELNEC, Long-Term Care Network, CCCC, the works of Kübler-Ross, a nd other providers specializing in death and dying. All associates received training on death and dying. Orient ation (for new associates) and competency training on death and dying (including our Butterfly program) were ad ded to the annual requirements for associates.
• Hospice provided information on pain management. Additio nal training resources were obtained to assist families in their understanding of the dying process. We also de termined ways that we could partner with Hospice, as the services it provides to families have a long-reaching impact.
• The Executive Director and volunteer family members purchased books that helped loved ones cope , deal with loss, etc. Many of these were children's books that tackled the subject of death in a way that anyo ne would feel comfortable understanding.
• The Social Worker prepared a handout to provide the families w ith ideas of things to do for the dying resident or things to talk about (figure 1).
• Members of the nur sing team developed the stages of the program to use as a teaching tool for residents and families.

• Identified a process for early identification of residents who might need the Butterfly program. This is called the "Butterfly Watch," and several options exist for identifying these reside nts (table 1).
• Developed three stages of the Butterfly program to identify residents' clinical, nutriti onal, psychosocial, medicinal, and emotional needs (tables 2-4).
• Developed a consent form for the progr am.
• Developed a focus charting form, which highlights areas of specific interest to the dying resident that the nurse will want to make sure to chart (figure 2).
• Developed a way to identify the room and cha rt of a Butterfly resident (butterfly sticker on the spine of a chart and a butterfly cutout placed next to the resident nameplate next to his/her door).
• Developed an end-of-life care plan.
• Developed a chec klist for residents' needs.
• Using the daily bed management form, the team developed a process to identi fy Butterfly residents, their current stage in the program, and the status of their advance directives.

Psychosocial Needs Team: Executive Director, Social Workers, Central Supply Coordinator, unit managers, nur ses, nursing assistants, dietary associates, housekeepers.

• Developed a Spiritual Assessment (fi gure 3).
• Identified Kübler-Ross's five stages of grieving as a tool for families.
• Filled a mob ile cart with items that the team felt would bring comfort to the resident. This cart is rolled into residents' rooms when they are ready for it and stays there until residents pass away (for the cart's contents, see "Butt erfly Cart Contents").
• A butterfly night-light is placed on the resident's bedside dresser.
• A Butterfly Journal is placed in the resident's room so that the associates can write messages to the resident or family members. These often include wonderful messages about their love for the resident, the special bond bet ween them, a favorite memory, or a spiritual invitation to the eternal journey that lies ahead. Messages of lov e and appreciation are written to the families to let them know how much they mean to everyone in the facility. The journal fills two very important needs: First, it lets the family know just how much their resident is lov ed; second, it shows them how often associates came to visit their loved ones. The journal is perhaps one of th e most important parts of the program.
• Sandwiches, coffee, snacks, or other comfort foods are provided to the family as the resident's death nears.

Resident participants: Various residents volunteered t o do special tasks, such as:

• praying with families or with other residents who were dying;
  < li> sitting with a dying resident when the family couldn't be there; and
• being available to hold someon e's hand.

Table 1. The Butterfly Watch process

Table 2. Butterflies are Free: Stage I

1.The resident is identified for end-of-life care throu gh the Butterfly Watch process, i.e.:
'Change in two or more indicators, e.g., weight loss, decubiti, falls, infections, mental status, level of function, or continence status.
'After completion of a 14-day observati on period (based on the above criteria), a determination is made for a significant change in status or admissio n into the Butterflies are Free program.
2.If the resident has a sudden decline in condition, he/she can be admitted into the program.
3.The resident and family are notified of the program, and education is provided on the program's stages and what to expect in the dying process.
4.Hospice consult is offered.
5.The resi dent or his/her legal decision maker provides signed consent to participate in the program.
6.Social Service s completes the spiritual assessment, ensuring that end-of-life wishes are known and opportunities for unresolv ed issues are available.
7.Kübler-Ross's five stages of grieving are reviewed with families to help them cop e with feelings of loss.
8.The resident's name and stage in the program are listed on the daily bed manageme nt form. Residents in the Butterfly program are reviewed daily if changes are noted.
9.A butterfly is placed above or below the nameplate at the door of the resident's room to identify that the resident is in the Butter fly program.
10.A butterfly sticker is placed on the spine of the resident's chart to alert the nurses that the resident is in the program.
11.An end-of-life care plan is developed with the resident and family. The t hree stages of the program (tables 2-4) are again reviewed with the resident and family. (Just as each resident ages differently, residents die differently, and not every stage will apply equally to each resident.) Discuss ions are held regarding medications, lab tests, and diet and consistency of food, as well as psychosocial and s piritual needs. The care plan will change and need to be updated as the resident progresses through the dying p rocess.
12.A Focus Charting alert is placed in the resident's chart so that nurses will know to chart on the areas that are highlighted. The highlighted items come from the care-planning process.
13.If desired, a But terfly Cart is wheeled into the resident's room. The cart is a three-drawer, heavy, plastic cart on rollers tha t can be purchased at any discount or office supply store. In the cart are items the team believes will bring c omfort to the resident and the family (see "Butterfly Cart Contents").
14.A butterfly night-light and Butter fly Journal are placed on the bedside table.
15.An Activity Department representative will interview the res ident or the family to determine a favorite hobby or travel destination that the resident has enjoyed. Every ef fort is made to decorate the resident's room so that he/she will remember the hobby, activity, or favorite trav el destination.
16.Associates make several visits to the resident. Some associates stop to pray; others read to the resident; and yet others just stop by to ensure that the resident is comfortable or to tell him/her tha t he/she is loved. Everyone writes in the resident's journal. Music is played, if desired, and softly scented l otion is applied to the resident's hands and arms, if appropriate. Other attempts are made to soothe and comfor t the resident.
17.The program's chairperson is a housekeeper, who makes Butterfly rounds every day. She in vites others to come along and meet the residents. She has been a huge part of the program's success.
18.Res idents are invited to come and visit with other Butterfly residents, and often they do sit and hold a hand. Oth er times they pray together.
19.Families are invited to participate in the resident's care at their own leve l of comfort. For example, if a family member wants to participate in the pain-management program, training is given on how to monitor for signs and symptoms of anxiety and pain. When the family member sees these signs and symptoms, he/she will alert the nurse so that medication can be given.
20.A checklist is given to the nurse manager of the resident's unit to ensure that we have not overlooked any opportunity to bring comfort to the r esident.
21.As the resident moves through the dying process, the care plan is constantly updated. Making cha nges to the texture of food is important, and comfort foods are added as desired. (Oreo cookies and ice cream a re the number one requested comfort food, and associates are quick to fill those requests.) Routine medications are normally discontinued, and pain medications are monitored for effectiveness. Labs and x-rays are discontin ued unless they address an acute situation, relief of which might enhance the resident's comfort.
22.Dietary routinely checks with the family to see if snacks or soft drinks are needed.
23.Spiritual comfort is provid ed as per the resident's preference.
24.Every effort is made to have associates in the room with the residen t at the time of death.
25.A stuffed bear (similar to a Beanie Baby) with a butterfly embroidered on its sto mach is given to the family as a keepsake. When a family has small children, we often give each child a Butterf ly Bear.
26.Following the resident's death, a book called Beyond This Day, with stories and devotiona ls geared toward helping the family cope with the death of a loved one, is mailed to the family, along with a c edar keepsake box and the Butterfly Journal. We have received many positive comments about these gifts.
27.A ssociates attend funeral services for the deceased resident and have been asked to speak at the funerals of sev eral residents. Memorial services are also held at the facility.

Table 3. Butterflies are Free: Stage II< /b>

Table 4. Butterflies are Free: Stage III

• increase the number of witnessed deaths
• have earlier identification of residents in the end stages of their lives
• continue use of the pain me dication Roxanol and the antianxiety agent Ativan for comfort
• identify residents willing to become memb ers of the Butterfly comfort team

During the initiation of the Butterfly program we identified some conflic t between the rehabilitation staff (physical and occupational therapists) and the nursing associates concerning the Butterfly residents who continued to receive therapy. The conflict focused on the administration of a narc otic analgesic, Roxanol (morphine sulfate), before therapy sessions. For some residents this meant they were to o sedated to participate in therapy. Therapists, accustomed to an aggressive therapy approach, felt that the an algesic was interfering with therapy. On the other hand, some nursing associates were reluctant to administer a nalgesics at doses high enough to achieve comfort, fearing that their dose would be the "last dose" given befor e death. Apprehension was high among both groups.

To combat these fears we took the following actions: Hospice was requested to provide a dditional training for all disciplines on the use of Roxanol and antianxiety medication to maximize comfort and improve quality of life toward the end of life. The consultant pharmacist was asked to review residents' medic al records to verify that the nursing associates were adequately assessing the residents' comfort level before administering analgesics. He was able to document that an increase in Roxanol use occurred after a decline in a resident's condition and was not the cause of that decline.

The additional training and discussion amon g disciplines at ethics meetings served to give associates a greater level of comfort with the use of an analge sic. A review of pain assessment and management at the end of life is now part of our annual continuing educati on program for licensed nursing staff.

We kept detailed statistics on those residents who received Roxanol, with the goal of determining how early identification of the Butterfly residents affected pain management. We found that the average time be tween identifying the resident as qualified for the program and the subsequent initiation of Roxanol was six da ys. The decline in the percentage of deaths within six days of starting Roxanol from 78% in 2003 to 50% in 2004 demonstrated an improvement in earlier identification of the Butterfly candidates, thus satisfying one of our major goals. Deaths within two days of starting Roxanol remained virtually the same in the first six months of 2004 as it was in 2003. This lack of improvement may represent those residents who appear to be fine one day an d take a dramatic turn the next, not allowing time for the use of Roxanol. Another factor in this seemed to be that the resident did not appear to be in pain at this late stage and/or had already been given other sufficien t pain medications.

1. Music: CD/cassette players and hundre ds of CDs to choose from. Music to suit the resident's taste is placed in the bottom drawer of the cart so that the resident can have his/her favorite music at any time. Whether it is country, jazz, classical, southern gos pel, big band music, or music native to a country, we will provide it to the resident. For example, by providin g the CD/cassette player and stressing the importance of music, we gave the daughters of a dying gentleman who immigrated from Ireland the idea to bring in cassette recordings of him singing Irish songs he had recorded 30 years earlier. It was abundantly clear to everyone that this music not only comforted the resident but also the family.

2. Books and inspirational information: The Chicken Soup for the Soul line of boo ks, children's books about death and dying, reminiscence books, books of poetry, and books that offer a line of questions to ask to record a person's legacy. Bibles, prayer books, and other spiritual journey materials are included in the cart's middle drawer, as are laminated instructional sheets and laminated copies of the Lord's Prayer and the Hail Mary.

3. The top drawer contains comfort-related products such as tissues, To othettes, softly scented lotion for hand massages (if appropriate), talcum powder for back rubs (if appropriate ), baby wipes for cleansing, and bed/bath items if necessary.
 

Another unexpected outcome was detected in the community at large. We began receiving direct referrals from Hospice, family members, and physicians in the community who had heard ab out our program. This has strengthened our reputation and has provided us a specialty role to perform in the co mmunity. In fact, we are now sharing our program with our local competitors.

The Future
While the Butterfly program as an official CQI effort has been discontinued, we routinely receive n ew ideas about it from our associates and families. Our focus continues to be:

• early identifica tion of Butterfly residents
• continued comfort measures for residents
• effective pain control
• resident involvement
• family comfort
• reduced family expense
• staff comfort

The Butterflies are Free program, when embraced as a part of a culture of caring, can become the expected approach to caring for all end-of-life residents. The cost is minimal, and the improvement in the end-of-life experience for both residents and families can be dramatic. The comfort level of staff with the dying process can improve immeasurably.

All or parts of this program can be implemented easily in any nursing home or assisted li ving facility. It is our sincere hope that this program will have a positive affect on residents all across the nation. And if the American Medical Association happens to notice that nursing homes have become the best plac e to die, that's fine with us, too.

Jean Dookiesingh, Housekeeper, Commi ttee Chairperson
Virginia Hilton, Director of Nursing Services
Wanda Gaulman, Central Supply Coordinator
Latrina Clemmons, Restorative CNA
Kathie Hughes, LPN
Lesley Escoto, LPN
Michele Prince, Social Ser vices Director
Kim Wallis, LPN
Jessica Dorman, CNA
Bernadette Murray, CNA
Pat Malone, HousekeeperLizz Vazquez, Housekeeping Supervisor
Beverly Dickinson, LPN
Denise Tarutis, Activity Director
Nina Willingham, CNHA, Senior Executive Director