One nursing home’s end-of-life program

Butterflies are free: one nursing home’s end-of-life program

As fellow leaders of quality skilled nursing facilities, you can imagine our horror as we read a summer 2002 article in the New York Times quoting physicians from the American Medical Association 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) project to develop a quality end-of-life program. We named the program “Butterflies are Free” (the butterfly reference signifying “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 Although the project is no longer active as a CQI exercise, we continue to make improvements to it.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. The Social Worker began looking online for end-of-life resources. We found the End-of-Life Nursing Education Consortium (ELNEC) Web site (, the California Coalition for Compassionate Care (CCCC) (, and Elisabeth Kubler-Ross’s “stages of grieving” 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, including the Executive Director, Director of Nursing, Social Services Director, Financial Director, Activity Director, and volunteer representatives from nursing, dietary, and housekeeping. Three family members, representing various faiths, were also involved in the early planning stages.


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.

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 and individualized 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 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 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 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 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, 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, medicinal, 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 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.

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.


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 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 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.

15. An Activity Department representative will interview the resident or the family to determine a favorite hobby 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.


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 is applied to the resident’s hands and arms, if appropriate. Other attempts are made to soothe and comfort the resident.

17. The program’s chairperson is a housekeeper, 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, 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) with a butterfly embroidered 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 for the deceased resident and have been asked to speak at the funerals of several residents. Memorial services are also held at the facility.


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 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 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 narcotic analgesic, Roxanol (morphine sulfate), 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 at doses high enough to achieve comfort, fearing that their dose would be the “last dose” given before death. Apprehension 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 medication to maximize comfort and improve quality of life toward the end of life. The consultant pharmacist 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 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 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.


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 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.

All or parts of this program can be implemented easily in any nursing home or assisted living 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, Senior Executive Director, at (941) 360-6411. For more information on the OPTIMA Awards, visit To send comments to the editors, please e-mail 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 CNA

Kathie Hughes, LPN

Lesley Escoto, LPN

Michele Prince, Social Services Director

Kim Wallis, LPN

Jessica Dorman, CNA

Bernadette Murray, CNA

Pat Malone, Housekeeper

Lizz Vazquez, Housekeeping Supervisor

Beverly Dickinson, LPN

Denise Tarutis, Activity Director

Nina Willingham, CNHA, Senior Executive Director


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 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 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 books, 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, Toothettes, 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.

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 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.


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.


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.


The Butterflies are Free Committee

Figure 1. A handout given to families about what they can do for dying


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


* 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


* 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


* 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


Mean number of days on 0 15 Days on program

end-of-life program

Mean out-of-pocket $1,276 $673 Dollars per resident


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


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