Butterflies are free: one nursing home's end-of-life program.As fellow leaders of quality skilled nursing facilities skilled nursing facility n. Abbr. SNF An establishment that houses chronically ill, usually elderly patients, and provides long-term nursing care, rehabilitation, and other services. , you can imagine our horror as we read a summer 2002 article in the New York New York, state, United States New York, Middle Atlantic state of the United States. It is bordered by Vermont, Massachusetts, Connecticut, and the Atlantic Ocean (E), New Jersey and Pennsylvania (S), Lakes Erie and Ontario and the Canadian province of Times quoting physicians from the American Medical Association American Medical Association (AMA), professional physicians' organization (founded 1847). Its goals are to protect the interests of American physicians, advance public health, and support the growth of medical science. 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, especially when we believe that our nursing home is an exception to the rule. So we decided that we would prove the physicians 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 nondying. So on September 17, 2002, we began a continuous quality improvement (CQI CQI Continuous Quality Improvement CQI Chartered Quality Institute (UK) CQI Clinical Quality Improvement CQI Channel Quality Indicator CQI Constant Quality Improvement CQI Canonical Query Language CQI Cost of Quality Improvement ) project to develop a quality end-of-life program. We named the program "Butterflies are Free Butterflies Are Free is a play by Leonard Gershe. Loosely based on the life of attorney Harold Krents, the plot revolves around a Manhattan blind man whose controlling mother disapproves of his relationship with a free-spirited hippie. " (the butterfly butterfly, any of a large group of insects found throughout most of the world; with the moths, they comprise the order Lepidoptera. There are about 12 families of butterflies. Most adult moths and butterflies feed on nectar sucked from flowers. reference signifying Signifyin' (slang) is an African-American rhetorical device featuring indirect communication or persuasion and the creating of new meanings for old words and signs. Signifying, in this sense, includes repetition and difference, implication and association, combining words and "moving from one 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 program 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 opportunity for program development existed, we began tapping into every resource we could find. The Executive Director 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 hospice, program of humane and supportive care for the terminally ill and their families; the term also applies to a professional facility that provides care to dying patients who can no longer be cared for at home. . The Social Worker began looking online for end-of-life resources. We found the End-of-Life Nursing Education Consortium (ELNEC ELNEC End-of-Life Nursing Education Consortium ) Web site (www.aacn.nche.edu/elnec), the California Coalition for Compassionate com·pas·sion·ate adj. 1. Feeling or showing compassion; sympathetic. See Synonyms at humane. 2. Granted to an individual because of an emergency or other unusual circumstances: Care (CCCC CCCC Cerro Coso Community College (California) CCCC Conference on College Composition and Communication (NCTE) CCCC Central Carolina Community College CCCC Canadian Council of Christian Charities ) (www.finalchoices.calhealth.org), and Elisabeth Kubler-Ross's "stages of grieving grieving Mourning, see there " to be particularly helpful. Using the CCCC's "Assessing Your Facility's Policy and Practice of End-of-Life," we completed a facility self-assessment to determine how we felt about providing good end-of-life practices. We identified strengths, weaknesses, and opportunities for improvement, and established baseline data with which we would measure our progress. We also began to review the needs of our residents, their families, and our associates to determine what services were needed at the end of life. Initial issues 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 reluctant to accept their loved ones' approaching deaths. * Concerns were expressed about new faces and new philosophies being introduced to residents at the end of life when Hospice staff arrived to provide care. We are fully staffed, with no agency personnel, and we staff on a permanent assignment basis. Because our staff and residents know each other so well, this has created a family culture in our facility--and new faces are new faces. * Financial strain on residents and their families were posed by end-of-life programs already operating 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 interdisciplinary team, n a group that consists of specialists from several fields combining skills and resources to present guidance and information. , including the Executive Director, Director of Nursing, Social Services social services Noun, pl welfare services provided by local authorities or a state agency for people with particular social needs social services npl → servicios mpl sociales Director, Financial Director, Activity Director, and volunteer representatives from nursing, dietary, and housekeeping A set of instructions that are executed at the beginning of a program. It sets all counters and flags to their starting values and generally readies the program for execution. . 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-life program that maintains comfort and dignity for the resident, involving the family, residents, and staff in the plan of care at their personal level of comfort. The end-of-life program should put no financial strain on the family." The team established the following objectives to meet the goals: 1. The resident will be pain- and anxiety-free during the dying process. 2. The family will be actively involved in the end-of-life care and dying process. 3. All associates involved will be aware of the end-of-life care plan. 4. The goal for out-of-pocket expense for the resident and family will be from $0 up to the Medicare copay co·pay n. A copayment. . 5. The resident's Medicare benefit will be appropriately maximized. 6. The resident and family will 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 palliative care (paˑ·lē·ā·tiv kerˑ), n an approach to health care that is concerned primarily with attending to physical and emotional comfort rather and individualized in·di·vid·u·al·ize tr.v. in·di·vid·u·al·ized, in·di·vid·u·al·iz·ing, in·di·vid·u·al·iz·es 1. To give individuality to. 2. To consider or treat individually; particularize. 3. attention for those residents who are at or near the end of their life." The team determined that data would be collected for the following indicators: * use of pain medication prior to death * time and shift of death * witnessed versus unwitnessed deaths * out-of-pocket expenses out-of-pocket expenses n. moneys paid directly for necessary items by a contractor, trustee, executor, administrator or any person responsible to cover expenses not detailed by agreement. for families and residents * family concerns and comments Teams were developed to initiate different components of the program: Education Team: Executive Director, Director of Nursing, Staff Development Coordinator, Social Workers, Hospice, family members. * The Staff Development Coordinator secured training resources from Hospice, ELNEC, Long-Term Care long-term care (LTC), n the provision of medical, social, and personal care services on a recurring or continuing basis to persons with chronic physical or mental disorders. Network, CCCC, the works of Kubler-Ross, and other providers specializing in death and dying. All associates received training on death and dying. Orientation (for new associates) and competency COMPETENCY, evidence. The legal fitness or ability of a witness to be heard on the trial of a cause. This term is also applied to written or other evidence which may be legally given on such trial, as, depositions, letters, account-books, and the like. 2. training on death and dying (including our Butterfly program) were added to the annual requirements for associates. * Hospice provided information on pain management. Additional training resources were obtained to assist families in their understanding of the dying process. We also determined 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 loved ones npl → seres mpl queridos loved ones npl → proches mpl et amis chers loved ones love npl cope, deal with loss, etc. Many of these were children's books that tackled the subject of death in a way that anyone would feel comfortable understanding. * The Social Worker prepared a handout to provide the families with ideas of things to do for the dying resident or things to talk about (figure 1). * Members of the nursing team developed the stages of the program to use as a teaching tool for residents and families. Clinical Needs Team: Director of Nursing, Assistant Director of Nursing, unit managers, nurses, Pharmacist pharmacist /phar·ma·cist/ (fahr´mah-sist) one who is licensed to prepare and sell or dispense drugs and compounds, and to make up prescriptions. phar·ma·cist n. , nursing assistants, Hospice. * 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 residents (table 1). * Developed three stages of the Butterfly program to identify residents' clinical, nutritional, psychosocial psychosocial /psy·cho·so·cial/ (si?ko-so´shul) pertaining to or involving both psychic and social aspects. psy·cho·so·cial adj. Involving aspects of both social and psychological behavior. , medicinal medicinal /me·dic·i·nal/ (mi-dis´in-il) having healing qualities; pertaining to a medicine. me·dic·i·nal adj. Of, relating to, or having the properties of medicine. , and emotional needs (tables 2-4). * Developed a consent form for the program. * 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 chart of a Butterfly resident (butterfly sticker on the spine of a chart and a butterfly cutout cut·out n. 1. Something cut out or intended to be cut out from something else. 2. Electricity A device that interrupts, bypasses, or disconnects a circuit or circuit element. 3. placed next to the resident nameplate next to his/her door). * Developed an end-of-life care plan. * Developed a checklist for residents' needs. * Using the daily bed management form, the team developed a process to identify Butterfly residents, their current stage in the program, and the status of their advance directives Advance Directive A document expressing a person's wishes about critical care when he or she is unable to decide for him or herself. However, it does not authorize anyone to act on a person's behalf or make decisions the way a power of attorney would. . Psychosocial Needs Team: Executive Director, Social Workers, Central Supply Coordinator, unit managers, nurses, nursing assistants, dietary associates, housekeepers. * Developed a Spiritual Assessment (figure 3). * Identified Kubler-Ross's five stages of grieving as a tool for families. * Filled a mobile 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 "Butterfly 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 between them, a favorite memory, or a spiritual invitation to the eternal journey that lies ahead. Messages of love 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 loved; second, it shows them how often associates came to visit their loved ones. The journal is perhaps one of the 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 to do special tasks, such as: * praying with families or with other residents who were dying; * sitting with a dying resident when the family couldn't be there; and * being available to hold someone's hand. Implementation Our planning resulted in the "Butterfly Process": 1. The resident is identified for end-of-life care through 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 continence /con·ti·nence/ (kon´tin-ens) the ability to control natural impulses.con´tinent con·ti·nence n. 1. Self-restraint; moderation. 2. status. * After completion of a 14-day observation period (based on the above criteria), a determination is made for a significant change in status or admission 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 resident or his/her legal decision maker provides signed consent to participate in the program. 6. Social Services completes the spiritual assessment, ensuring that end-of-life wishes are known and opportunities for unresolved Not completed; not finished; not linked together. See resolve. issues are available. 7. Kubler-Ross's five stages of grieving are reviewed with families to help them cope with feelings of loss. 8. The resident's name and stage in the program are listed on the daily bed management 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 Butterfly 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 three 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.) Discussions are held regarding medications, lab tests, and diet and consistency of food, as well as psychosocial and spiritual needs. The care plan will change and need to be updated as the resident progresses through the dying process. 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 Butterfly Cart is wheeled into the resident's room. The cart is a three-drawer, heavy, plastic cart on rollers that can be purchased at any discount or office supply store. In the cart are items the team believes will bring comfort to the resident and the family (see "Butterfly Cart Contents"). 14. Abutterfly night-light and Butterfly Journal are placed on the bedside table bedside table bed n → table f de chevet . 15. An Activity Department representative will interview the resident or the family to determine a favorite hobby A hobby is a spare-time recreational pursuit. Origin of term A hobby-horse was a wooden or wickerwork toy made to be ridden just like the real hobby. From this came the expression "to ride one's hobby-horse", meaning "to follow a favourite pastime", and in turn, or travel destination that the resident has enjoyed. Every effort is made to decorate the resident's room so that he/she will remember the hobby, activity, or favorite travel destination. [FIGURE 2 OMITTED] 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 that he/she is loved. Everyone writes in the resident's journal. Music is played, if desired, and softly scented lotion lotion /lo·tion/ (lo´shun) a liquid suspension, solution, or emulsion for external application to the body. lo·tion n. 1. is applied to the resident's hands and arms, if appropriate. Other attempts are made to soothe soothe v. soothed, sooth·ing, soothes v.tr. 1. To calm or placate. 2. To ease or relieve (pain, for example). v.intr. To bring comfort, composure, or relief. and comfort the resident. 17. The program's chairperson chairperson Chairman The head of an academic department. See 'Chair.', Cf Chief. is a housekeeper HOUSEKEEPER. One who occupies a house. 2. A person who occupies every room in the house, under a lease, except one, which is reserved for his landlord, who pays all the taxes, is not a housekeeper. 1 Chit. Rep. 502. , who makes Butterfly rounds every day. She invites others to come along and meet the residents. She has been a huge part of the program's success. 18. Residents are invited to come and visit with other Butterfly residents, and often they do sit and hold a hand. Other times they pray together. 19. Families are invited to participate in the resident's care at their own level 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 resident. 21. As the resident moves through the dying process, the care plan is constantly updated. Making changes to the texture of food is important, and comfort foods are added as desired. (Oreo cookies and ice cream are the number one requested comfort food, and associates are quick to fill those requests.) Routine medications are normally discontinued dis·con·tin·ue v. dis·con·tin·ued, dis·con·tin·u·ing, dis·con·tin·ues v.tr. 1. To stop doing or providing (something); end or abandon: , and pain medications are monitored for effectiveness. Labs and x-rays are discontinued 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 provided as per the resident's preference. 24. Every effort is made to have associates in the room with the resident at the time of death. 25. A stuffed bear (similar to a Beanie Baby Sources: A Beanie Baby is a stuffed animal made by Ty Inc. Ty was founded by Ty Warner who promoted the line in specialty stores and gift shops. The Ty company's famous special "posable lining" is understuffed with plastic pellets (or "beans") rather than stuffing ) with a butterfly embroidered em·broi·der v. em·broi·dered, em·broi·der·ing, em·broi·ders v.tr. 1. To ornament with needlework: embroider a pillow cover. 2. on its stomach is given to the family as a keepsake. When a family has small children, we often give each child a Butterfly Bear. 26. Following the resident's death, a book called Beyond This Day, with stories and devotionals geared toward helping the family cope with the death of a loved one, is mailed to the family, along with a cedar keepsake box and the Butterfly Journal. We have received many positive comments about these gifts. 27. Associates attend funeral services funeral service n → misa de cuerpo presente funeral service n → service m funèbre funeral service funeral n for the deceased deceased 1) adj. dead. 2) n. the person who has died, as used in the handling of his/her estate, probate of will and other proceedings after death, or in reference to the victim of a homicide (as: "The deceased had been shot three times. resident and have been asked to speak at the funerals of several residents. Memorial services are also held at the facility. Evaluation Data collection was focused on the goals we established at the beginning of the project. The deaths 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: * increase the number of witnessed deaths * have earlier identification of residents in the end stages of their lives * continue use of the pain medication Roxanol and the antianxiety agent antianxiety agent n. Any of a group of drugs used to treat anxiety without causing excessive sedation. Ativan for comfort * identify residents willing to become members of the Butterfly comfort team During the initiation of the Butterfly program we identified some conflict between the rehabilitation rehabilitation: see physical therapy. staff (physical and occupational therapists occupational therapist A person trained to help people manage daily activities of living–dressing, cooking, etc, and other activities that promote recovery and regaining vocational skills Salary $51K + 4% bonus. See ADL. ) and the nursing associates concerning the Butterfly residents who continued to receive therapy. The conflict focused on the administration of a narcotic narcotic, any of a number of substances that have a depressant effect on the nervous system. The chief narcotic drugs are opium, its constituents morphine and codeine, and the morphine derivative heroin. See also drug addiction and drug abuse. analgesic analgesic (ăn'əljē`zĭk), any of a diverse group of drugs used to relieve pain. Analgesic drugs include the nonsteroidal anti-inflammatory drugs (NSAIDs) such as the salicylates, narcotic drugs such as morphine, and synthetic drugs , Roxanol (morphine sulfate morphine sulfate, n brand names: Duramorph PF, MS Contin, Roxanol; drug class: narcotic analgesic (Controlled Substance Schedule II); action: ), before therapy sessions. For some residents this meant they were too sedated to participate in therapy. Therapists, accustomed to an aggressive therapy approach, felt that the analgesic was interfering with therapy. On the other hand, some nursing associates were reluctant to administer analgesics Analgesics Definition Analgesics are medicines that relieve pain. Purpose Analgesics are those drugs that mainly provide pain relief. at doses high enough to achieve comfort, fearing that their dose would be the "last dose" given before death. Apprehension The seizure and arrest of a person who is suspected of having committed a crime. A reasonable belief of the possibility of imminent injury or death at the hands of another that justifies a person acting in Self-Defense against the potential attack. was high among both groups. To combat these fears we took the following actions: Hospice was requested to provide additional training for all disciplines on the use of Roxanol and antianxiety antianxiety /an·ti·an·xi·e·ty/ (-ang-zi´e-te) anxiolytic; reducing anxiety. an·ti·anx·i·e·ty adj. Preventing or reducing anxiety. medication to maximize comfort and improve quality of life toward the end of life. The consultant pharmacist A consultant pharmacist is a specialized pharmacist who focuses on reviewing and managing the medication regimens of patients, particularly those in institutional settings such as nursing homes. was asked to review residents' medical 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 among disciplines at ethics ethics, in philosophy, the study and evaluation of human conduct in the light of moral principles. Moral principles may be viewed either as the standard of conduct that individuals have constructed for themselves or as the body of obligations and duties that a meetings served to give associates a greater level of comfort with the use of an analgesic. A review of pain assessment and management at the end of life is now part of our annual continuing education continuing education: see adult education. continuing education or adult education Any form of learning provided for adults. In the U.S. the University of Wisconsin was the first academic institution to offer such programs (1904). 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 between identifying the resident as qualified for the program and the subsequent initiation of Roxanol was six days. 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 and 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 sufficient pain medications. [FIGURE 3 OMITTED] One of the biggest improvements was the reaction from families of residents who were in the Butterfly program. We received thank-you cards and letters from many of them, letting us know just how much they appreciated the extra-special things that were done for their loved ones during their Butterfly journey. It became clear to us that the music, reading, hand massages, and every visit, no matter how short or 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 about our program. This has strengthened our reputation and has provided us a specialty role to perform in the community. 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 new ideas "New Ideas" is the debut single by Scottish New Wave/Indie Rock act The Dykeenies. It was first released as a Double A-side with "Will It Happen Tonight?" on July 17, 2006. The band also recorded a video for the track. about it from our associates and families. Our focus continues to be: * early identification 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 im·meas·ur·a·ble adj. 1. Impossible to measure. See Synonyms at incalculable. 2. Vast; limitless. im·meas . All or parts of this program can be implemented easily in any nursing home or assisted living as·sist·ed living n. A living arrangement in which people with special needs, especially older people with disabilities, reside in a facility that provides help with everyday tasks such as bathing, dressing, and taking medication. 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 place to die, that's fine with us, too. For more information, contact Nina Willingham, CNHA CNHA Canyonlands Natural History Association (Moab, Utah) CNHA Council for Native Hawaiian Advancement CNHA Canadian Network for Health in the Arts CNHA China National Hardware Association CNHA Certified Nursing Home Administrator , 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 optima0905@nursinghomesmagazine.com. To order reprints in quantities of 100 or more, call (866) 377-6454. Facility Team Jean Dookiesingh, Housekeeper, Committee Chairperson Virginia Hilton, Director of Nursing Services Wanda Gaulman, Central Supply Coordinator Latrina Clemmons, Restorative re·stor·a·tive adj. 1. Of or relating to restoration. 2. Tending or having the power to restore. n. A medicine or other agent that helps to restore health, strength, or consciousness. CNA (Certified NetWare Administrator) See Novell certification. Kathie Hughes, LPN LPN licensed practical nurse. LPN abbr. licensed practical nurse Lesley Escoto, LPN Michele Prince, Social Services Director Kim Wallis, LPN Jessica Dorman, CNA Bernadette Murray, CNA Pat Malone Lizz Vazquez, Housekeeping Supervisor Beverly Dickinson, LPN Denise Tarutis, Activity Director Nina Willingham, CNHA, Senior Executive Director BY THE STAFF ASSOCIATES AT LIFE CARE CENTER OF SARASOTA, SARASOTA, FLA FLA Florida (old style) FLA Macromedia Flash (file extension) FLA Flash Files (file extension) FLA Fair Labor Association FLA Front Line Assembly RELATED ARTICLE: Butterfly Cart Contents 1. Music: CD/cassette players and hundreds of CDs to choose from. Music to suit the resident's taste is placed in the bottom drawer A person who orders a bank to withdraw money from an account to pay a designated person a specific sum according to the term of a bill, a check, or a draft. An individual who writes and signs a Commercial Paper, thereby becoming obligated under its terms. of the cart so that the resident can have his/her favorite music at any time. Whether it is country, jazz, classical, southern gospel, big band music, or music native to a country, we will provide it to the resident. For example, by providing 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 A removable magnetic tape storage module that contains supply and takeup reels (hubs) in the same housing. Most audio tapes and videotapes use cassettes as well as backup tape technologies such as DAT, 8mm and Magstar MP (see below). 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 in·spi·ra·tion·al adj. 1. Of or relating to inspiration. 2. Providing or intended to convey inspiration. 3. Resulting from inspiration. information: The Chicken Soup chicken soup Chicken broth Folk medicine Jewish penicillin A fowl broth with a long tradition as a home remedy for URIs, which may be a nasal decongestant, inhibit growth of pneumococci in vitro, and stimulate immune responsiveness in WBCs Mainstream medicine A for the Soul line of books, children's books about death and dying, reminiscence rem·i·nis·cence n. 1. The act or process of recollecting past experiences or events. 2. An experience or event recollected: "Her mind seemed wholly taken up with reminiscences of past gaiety" 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 laminated /lam·i·nat·ed/ (-nat?ed) having, composed of, or arranged in layers or laminae. laminated made up of laminae or thin layers. instructional sheets and laminated copies of the Lord's Prayer and the Hail Mary Hail Mary: see Ave Maria. Hail Mary Latin Ave Maria Principal Roman Catholic prayer addressed to the Virgin Mary. It begins with the greetings spoken to Mary by the Archangel Gabriel and by her cousin Elizabeth in the Gospel of Luke: . 3. The top drawer top drawer Noun Old-fashioned, informal people of the highest social standing contains comfort-related products such as tissues, Toothettes, softly scented lotion for hand massages (if appropriate), talcum tal·cum n. See talc. talcum talc, talcum powder. powder for back rubs (if appropriate), baby wipes baby wipe baby n → lingette f (pour bébé) baby wipe baby n → Ölpflegetuch nt for cleansing, and bed/bath items if necessary.
Dear family members and friends,
Life Care Center of Sarasota established a special program in 2002,
entitled "Butterflies are Free," for our residents who are at or nearing
the end of their lives. The sole purpose of this program is to provide
comfort and dignity to those residents so that their end-of-life
experience is pain-free, is as comfortable as possible, and honors the
wishes of the resident.
This cart is filled with items that can be used as therapeutic
interventions for your loved one. Please refer to the information
provided below. Additionally, if we can assist you in any way, please
make us aware. Your needs are important to us also.
Books and Conversation
It is thought that hearing is the last of the five senses to fail as a
person is dying. We encourage speaking or reading to a loved one, even
if you don't think he/she can hear you.
* Reading to someone is often a very soothing experience. Feel free
to read stories or poems to your loved one.
* Some books provide questions to ask that invoke pleasant memories.
For example, ask your loved one, "Do you remember the time
when ...?" or "I remember when I was a little girl [boy], you used
to...." Regardless of the response, the conversation is thought to
be soothing and can be beneficial to both the resident and the
person speaking.
* Talk about pleasant memories from the past. If your loved one had a
favorite hobby or favorite vacation spot, take him/her there in your
conversation. For example, you might ask, "If you could be anywhere
in the world right now, where would you like to be?" If the response
is, "I would like to be ballroom dancing," you could play waltz or
tango music that brings back special memories. Talk him/her through
the dance, helping him/her experience the memories. If the answer
is, "I would like to be back in Kentucky," you might talk about the
beautiful countryside, the horse farms, the lakes, or any other
characteristic of Kentucky that you know he/she loved.
* Allow your loved one to express any unresolved spiritual issues.
Bibles and prayer books are available. If desired, members of the
clergy can be called. There are also many persons in the facility
who would be willing to pray with your loved one at any time.
Music
Music has been described as medicine for the soul. The cart is furnished
with a CD player and CDs for the resident's pleasure. Life Care Center
of Sarasota has a very large collection of CDs with music to please
almost any taste. In our collection, we have southern and contemporary
gospel music, hymns, big band music, music from various countries, music
from every decade since the 1920s, favorite singers, Hawaiian music,
country music, classical music, and many others. Feel free to play soft
background music to comfort the resident. Please check with our Social
Services department for specific requests. We will do our best to find
the type of music your loved one would enjoy.
Lotion
A softly scented lotion is provided for gentle hand massages. Gently rub
the lotion on the hands of the resident. If your loved one has
paper-thin skin, you will want to check with the nurse to see if a hand
massage is appropriate.
Talcum Powder
Powder may be used for a gentle back rub. If your loved one is unable to
turn on his/her side or sit up on his/her own, ask for assistance from
the nursing staff. Please do not try to move the resident on your own.
Lip Balm
Lip balm or ChapStick may be gently rubbed on the lips to prevent the
lips from chapping.
Toothettes
Remove the Toothette from the wrapper and gently moisten the inside of
the mouth, including the teeth.
If you have any concerns or suggestions to convey to the staff, please
feel free to speak with us at any time. We want this time to be as
comforting and stress-free for everyone involved.
Sincerely,
The Butterflies are Free Committee
Figure 1. A handout given to families about what they can do for dying
residents.
Table 1. The Butterfly Watch process
* Residents are identified as potential Butterfly Watch by the
management team.
* The resident is reviewed during the "Resident at Risk" weekly meeting.
* If a resident has two or more "indicators" (as listed below), the
resident may be placed on a 14-day observation period and added to the
Butterfly Watch.
** Weight loss
** Decubitus ulcer
** Falls
** Infections
** Change in mental status
** Change in level of function
** Continence status change
* After completion of the 14-day observation, a determination will be
made for a "Significant Change" or admission to the Butterflies are
Free program.
* The Admissions Office will be informed concerning the resident's
status. This information will be added to the daily census report that
is available to the management team each morning.
Table 2. Butterflies are Free: Stage I
* Care plan meeting with resident and family
* Butterfly designation on the door
* Continuation of all medications -- refusals are allowable
* Continuation of all therapies -- refusals are allowable
** Pace therapy to resident's tolerance
* Monitor pain daily and medicate as indicated
* Continuation of lab orders
* Liberalization of diet -- family may bring in favorite foods and
beverages
* Obtain DNR, CTI (certificate of terminal illness, which is a Florida
regulation), and a "do not hospitalize" order
* Clarification of advance directives and healthcare surrogate/proxy
with resident and/or family
* Encourage Hospice consult and arrange Hospice/family conference
* Offer counseling for the resident -- obtain consent and make referral
to psychologist
* Cancel outside medical appointments
* Follow usual care plan meeting format
* Social Services/Activities to complete "Butterfly" assessment
This stage is initiated when the family/resident approaches Life Care
Center of Sarasota about end-of-life options. There is some uncertainty
if this is really the end of life even though a sudden decline is
observed. The family may have some concerns over the comfort of their
loved one.
Note: The Butterfly Cart may be initiated if appropriate.
Table 3. Butterflies are Free: Stage II
* All initiatives under stage I are completed and maintained
* Butterfly designation is placed on door
* Butterfly Cart is placed in room
* Review all medications with family and discontinue all noncomfort
medications
* Continue all laboratory orders for better assessment
* Discuss the goals of therapy
* Order for "as needed" pain medication is obtained
* Nursing pain assessment every eight hours
* Assess for microair/specialty bed
* Discontinue weights
* Continue routine showers -- initiate aggressive mouth care
* Offer arrangement for spiritual support
* Offer arrangement for pet therapy
* Clinical leadership team visits every three days
* Weekly care plan meeting with family if needed
* The resident shows signs of progression of disease or verbalizes
readiness to die exemplified by:
** Wounds
** Appetite decline
** Weight loss
** Decrease in activity
** Increased pain
** Guarding
* Family is aware of the end of life, and focus is on comfort and
quality of life
* Resident may be unable to swallow medications or is unwilling to do so
Family involvement in Life Care Center of Sarasota's end-of-life program
is welcomed.
Table 4. Butterflies are Free: Stage III
* All initiatives under stages I and II are completed and maintained
* Social Services assesses need for clergy and initiates the call
* Clinical signs and symptoms are monitored every four to eight hours
* Laboratory work is discontinued
* Weights are discontinued
* Therapy is discontinued
* Review medications and discontinue as many as possible
* Assess pain every two hours and provide medication if assessment
warrants
* Family is encouraged to be present at bedside
* Leadership team will make contact with resident/family daily
* Dietary manager will provide snacks and drinks once per shift for the
family or on request
* As death becomes imminent, move to a private room if possible
* Care plan meetings with family as necessary
In stage III, the resident is in the active stage of dying. Bed mobility
is poor, and there is high risk for wound development. Motivation is
very low. This can be demonstrated by refusal of oral intake and/or
becoming incontinent. There can be periods of decreased awareness/
arousal or loss of consciousness.
Table 5. Evaluating Butterflies are Free
2002 (control
Goal group) 2003 Measure
Number of resident deaths 50 59
Pain control 523 1,076 Doses of Roxanol
Anxiety control 7 50 Doses of Ativan/Xanax
Documented family comfort 72% 80% % of deaths with
documentation
Mean number of days on 0 15 Days on program
end-of-life program
Mean out-of-pocket $1,276 $673 Dollars per resident
expenses
Mean Medicare days per 37 24 Mean Medicare days
resident used
Family compliments 5 21 Letters, cards, gifts
per resident
Deaths by Shift
7-3 shift 28% 52%
3-11 shift 38% 32%
11-7 shift 34% 16%
Witnessed Deaths
7-3 shift 38% 60% Of the deaths
3-11 shift 42% 60% occurring on each
11-7 shift 20% 10% shift, the total
number that were
witnessed
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