Butterflies are Free: One Nursing Home’s End
|As fellow leaders of quality skilled nursing facilities, you can imagine our horr or as we read a summer 2002 article in the New York Times quoting physicians from the American Medical A ssociation as saying that "nursing homes are the worst place to die." We were extremely distressed to read this because we don't like to read stories that make broad, sweeping generalizations about nursing homes, especiall y when we believe that our nursing home is an exception to the rule. So we decided that we would prove the phys icians wrong.|
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 Although the project is no longer active as a CQI exercise, we continue to make improvements to it.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.
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:
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.
- 1.The resident will be pain- and anxiety-free during the dying process.
2.The family will be actively invol ved in the end-of-life care and dying process.
3.All associates involved will be aware of the end-of-life ca re plan.
4.The goal for out-of-pocket expense for the resident and family will be from $0 up to the Medicare copay.
5.The resident's Medicare benefit will be appropriately maximized.
6.The resident and family wil l be part of the team.
7.The resident and family will assist in developing the care plan.
8.The resident and family will feel/trust that their needs are being met.
|A mission statement was also developed: "To provide comfort through palliative care and individualized attention for those residents who are at or near the end of their life."|
The team de termined that data would be collected for the following indicators:
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.
|Figure 1. A handout given to families about what they can do f or dying residents.|
|Clinical Need s Team: Director of Nursing, Assistant Director of Nursing, unit managers, nurses, Pharmacist, nursing assi stants, Hospice.|
Psychosocial Needs Team: Executive Director, Social Workers, Central Supply Coordinator, unit managers, nur ses, nursing assistants, dietary associates, housekeepers.
Resident participants: Various residents volunteered t o do special tasks, such as:
Table 1. The Butterfly Watch process
Table 2. Butterflies are Free: Stage I
Our pl anning resulted in the "Butterfly Process":
'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
Data collection was focused on the goals we established at the beginning of the project. The de aths that occurred in 2002 were used as the control group and compared with the deaths that occurred in 2003 to see if the program made a difference. Every indicator improved (table 5). The goals that the team selected for 2004 were based on the 2003 data, and included:
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.
|Butterfly Cart Contents|
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.
|One of the biggest improvements was the reaction from families of residents w ho were in the Butterfly program. We received thank-you cards and letters from many of them, letting us know ju st how much they appreciated the extra-special things that were done for their loved ones during their Butterfl y journey. It became clear to us that the music, reading, hand massages, and every visit, no matter how short o r how long, were touching lives in a very special way. The families often cried when they read the expressions of love written in the Butterfly Journals. Many, especially those family members who lived out of town, told us that the journal gave them a sense of peace, knowing that their loved one was so well loved and was visited so often during his/her final days.|
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 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.
For more information, contact Nina Willingham, CNHA, Senior Executive Director, at (941) 360-6411. For more information on the OPTIMA Awards, visit www.nursinghomesmagazine.com. To send comments to the editors, please e-mail firstname.lastname@example.org. To order reprints in quantities of 100 or more, call (866) 377-6454.
Jean Dookiesingh, Housekeeper, Commi ttee Chairperson
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