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doi: 10.4037/ccn2010235 2010;30:47-58Crit Care Nurse Kimberly ThomasLenhart, Diane Manche, Marilyn Morris, Bill Newton, Lisa Ortman, Katherine Young and Susan Yeager, Carol Doust, Sharon Epting, Britney Iannantuono, Catherine Indian, BetsyCritical Care Patients and Their FamiliesEmbrace Hope: An End-of-Life Intervention to Support Neurological  

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unit at Riverside Methodist Hospitalin Columbus, Ohio, wanted to offerhelp to families and patients travel-ing this difficult path. To supportthis goal, an organized, intentional,and flexible end-of-life interventionwas needed. Using subjective datagathered from our neurocritical carestaff and client families, we devel-oped a plan of care called “EmbraceHope” to help patients and theirfamilies through the dying process.Embrace Hope is a structured multi-disciplinary delineation of end-of-life interactions that includeeducational and support informa-tion to be received immediately orat some point after the patient hasdied. In this article, we provide anoverview of the specific items that

Susan Yeager, RN, MS, CCRN, ACNPCarol Doust, MA, LSW, LPCCSharon Epting, RN, BSNBritney Iannantuono, RN, BSNCatherine Indian, BSBetsy Lenhart, RN, BSNDiane Manche, MSW, LISWMarilyn Morris, MDiv, BCCBill Newton, MSW, LISWLisa Ortman, RN, BSN, CHPNKatherine Young, RN, BSNKimberly Thomas

Embrace Hope: An End-of-LifeIntervention to Support Neurological Critical CarePatients and Their Families

Neurology/Neurosurgery

PRIME POINTS

• Because of the acutenature of most neurologi-cal events, families areoften faced with rapidprocessing of the illnesswith little time to realizethat their loved one isgoing to die.

• Embrace Hope is astructured multidiscipli-nary delineation of end-of-life interactions thatinclude educational andsupport information tobe received soon after thepatient has died.

• Staff feedback indi-cates that coordinatingan end-of-life planenabled a decrease in themoral distress of staff.

Watching thedying processof patients inacute care set-tings can be

unsettling for both patients’ fami-lies and staff. The neurocritical care

©2010 American Association of Critical-Care Nurses doi: 10.4037/ccn2010235

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This article has been designated for CE credit.A closed-book, multiple-choice examinationfollows this article, which tests your knowl-edge of the following objectives:

1. Discuss relevant research findings in end-of-life care

2. Define the term “good death” as outlinedin research findings and identify the com-ponents that affect patient and family per-ceptions of a “good death”

3. Describe the interventions included in theEmbrace Hope plan of care

CEContinuing Education

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made up the Embrace Hope inter-vention, and we use DJ’s story as anexample of how the new interven-tion was applied.

LiteratureMore than 50% of deaths in the

United States occur in hospitals.1

More than 4 million patients areadmitted to intensive care units inthe United States annually, and ofthose admitted, approximately500 000 or 10% to 20% die.2,3 As thepopulation ages and technologicalsupport advances, needs related toend-of-life care increase. In anattempt to address this growingneed, multiple organizations gath-ered in January 2005 to support anational consensus project for end-of-life care. The global goal of thisgroup was to establish care stan-dards for the period around the endof life. To achieve this goal, thegroup’s focus included symptommanagement and support ofpatients and their families duringthe dying process via adequate com-munication and decision making.This multiorganizational groupidentified the need to increase structural support in institutional

settings and to identify areas for pal-liative care.1

In a study performed by Teno etal,4 a mortality follow-back survey ofapproximately 1500 surrogates(next of kin) occurred. The focus ofthe study was to evaluate the dyingexperience of persons in the UnitedStates at home and in an institu-tional setting. Results indicated that

people in the United States whodied in institutions died with unmetneeds for symptom amelioration,physician communication, emo-tional support, and respectful treat-ment.4

A 2-year prospective observa-tional study5 with more than 4300end-of-life patients occurred from1989 to 1991. The objectives of thisstudy were to improve end-of-lifedecision making and reduce the fre-quency of a mechanically sup-ported, painful, and prolongedprocess of dying. The study wasfocused on obtaining informationfrom dying patients about treat-ment preferences and patterns ofdecision making among critically illpatients. Results of this study indi-cated shortcomings in practitionercommunication, frequency ofaggressive treatment, and familyreport of patients experiencingsevere to moderate pain at the end

Susan Yeager is a trauma/acute and emergency surgery nurse practitioner at The OhioState University Medical Center in Columbus, Ohio.

Sharon Epting is a nurse case manager at Riverside Interventional Consultants, in Columbus, Ohio.

Carol Doust is a hospice social worker, Britney Iannantuono, Betsy Lenhart, and Kather-ine Young are staff nurses in the neurocritical care unit, Catherine Indian is a patient careadvocate, Diane Manche is a neuroscience social worker, Marilyn Morris is a chaplain,Bill Newton is a rehabilitation social worker, Lisa Ortman is a hospice nurse, and Kim-berly Thomas is a unit clerk and patient care technician in the neurocritical care unit atRiverside Methodist Hospitals in Columbus, Ohio.Corresponding author: Susan Yeager, RN, MS, CCRN, ACNP, The Ohio State University Medical Center, 410 W. 10thAve, Columbus, Ohio 43210 (e-mail: syeager@columbus.rr.com).

To purchase electronic or print reprints, contact The InnoVision Group, 101 Columbia, Aliso Viejo, CA 92656.Phone, (800) 899-1712 or (949) 362-2050 (ext 532); fax, (949) 362-2049; e-mail, reprints@aacn.org.

Authors

Case Study

According to the family, DJ was a wonderful daughter, wife, mother,and person. At 28 years of age, she had been married to her high-schoolsweetheart Jim for nearly 10 years. She had just graduated from college andwas in the process of searching for new job opportunities to help supportthe needs of their 6-year-old and 8-year-old daughters. Her life was full ofpromise.

We came to know DJ and her large family after she was admitted to ourneurological critical care unit (NCC). DJ was the unrestrained driver in ahigh-speed head-on collision where she sustained major head injuries. Uponher arrival in the NCC, her examination revealed intact pupillary, cough,corneal, and gag reflexes; respiratory efforts above the ventilatory; andextensor posturing of her upper extremities. The computed tomographyscan of her head showed diffuse intraparenchymal injuries with massivebrain edema. We supported her with technological and pharmacologicalmeasures, but in the end, DJ deteriorated to no function except occasionalventilatory assistance. The nurses and medical staff worked tirelessly tomedically care for DJ while emotionally supporting the very large familythat kept vigil at her bedside.

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of life.5 Of the patients included inthe study, 38% had spent at least 10days in the intensive care unit.5

Mosenthal et al6 did a prospec-tive, observational study of 42trauma deaths before an interven-tion and 52 trauma deaths after anintervention. In that study, care wasevaluated before a structured pallia-tive care intervention was integratedinto standard intensive care. Resultsfrom after the intervention indi-cated an ability to integrate pallia-tive care interventions within thisenvironment leading to earlier con-sensus on goals of care for dyingtrauma patients.6

In 2001, the Society of CriticalCare Medicine (SCCM) publishedrecommendations for end-of-lifetreatment in the intensive care unit.The recommendations acknowl-edged the emerging perspective thatpalliative and intensive care are notmutually exclusive.7 Although somepatients benefit from the transitionto other care settings, others are sodependent on critical care technol-ogy that transfer is not possible.Therefore, SCCM recommended aseries of interventions necessary forclinicians in intensive care units toensure transition to death. Examplesinclude preparing the team, ensur-ing patients’ comfort, offering avariety of ventilator withdrawaltechniques, and learning communi-cation skills to support patients’families.7

The American Academy of Criti-cal Care Medicine in 2008 released a consensus document for end-of-life recommendations that updatethe 2001 version. Acknowledgingthat 95% of patients may not be able to make decisions themselvesbecause of illness, patient- and

family-centered decision makingwas acknowledged as the compre-hensive ideal for end-of-life care.With this concept as the founda-tion, conflict resolution, familycommunication strategies, interdis-ciplinary team rounds, and practicalconsiderations for withdrawal ofcare were discussed.8

In 2006, the American Associa-tion of Critical-Care Nurses printedprotocols for end-of-life issues incritical care. In this document, 5major areas for end-of-life care werehighlighted: symptom management,family issues, withdrawing or with-holding support, communicationand conflict resolution techniques,and caring for the caregiver.9

BackgroundAlthough the literature is com-

pelling, situations similar to DJ’swere what prompted the NCC staffto focus on improving end-of-lifecare within our unit. About a yearbefore DJ’s death, the unit had expe-rienced 3 deaths of patients within 4days, leaving the unit staff emotion-ally drained. As several bedside stafflamented that emotional supportprovided to families currently wasperhaps not enough, an informaldebriefing session began betweenmultidisciplinary staff, bedsidenurses, and advanced practicenurses. A vision of providing opti-mal end-of-life care to our patientsand families through an organizedintervention was formed. Driven bythe desire of NCC staff and theneeds of patients and their familiesin end-of-life situations, a multidisci-plinary team gathered, literaturewas reviewed, and the concept of anend-of-life intervention that wouldenable families to embrace hope

despite life-changing and life-endingcircumstances was born.

Although neuroscience practiceinvolves aggressively treatingpatients and supporting their fami-lies during acute illness, death isalso a reality. Because of the acutenature of most neurological events,families are often faced with rapidprocessing of the illness with littletime to transition into the realiza-tion that their loved one is going todie. Additional stress occurs as cata-strophic neurological injuries oftenleave patients incapable of makingend-of-life decisions. These choicesare then deferred to families thatmay never have discussed finalwishes with their loved one. In thesesituations, practitioners are facedwith the challenge of not onlyactively caring for patients, but alsosupporting families as they transi-tion through the grieving process.Therefore, practitioners must learnto balance the difficult task of resus-citation with the art of compassion-ate end-of-life care.

Intervention Planning/Process Team Members

In order to ensure that the litera-ture supported a comprehensiveapproach to our end-of-life care, amultidisciplinary team was selectedto review the literature and assist increating a unit-specific process.7-9

The team consisted of several bed-side nurses, a patient care techni-cian, a unit clerk, a case manager, aneurological social worker, a pallia-tive care social worker, palliativecare and hospice nurses, a unit-based family communication liai-son, an intensivist, a neurosurgeon,2 pastoral care representatives, and

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a neurological nurse practitionerteam leader. Before moving forward,permission for monthly meetingswas sought from and granted by theunit’s leaders.

The name of the intervention,Embrace Hope, was selected.Despite the devastation of the deathof their loved one, our goal was toprovide immediate comfort as wellas lasting memories that were notclouded by awkward or disorganizedinteractions with hospital staff. Wewanted to relay our respect for theirloved one, while giving families thefreedom to customize the death tomeet their family’s preferences byproviding resources to support hopefor the future. Building on theresearch that outlined a “gooddeath” as one that provides physicaland emotional support, createsshared decision making, and treatsthe dying person/family withrespect, the group worked to createinterventions that would span thecontinuum.10 The following sectionsprovide an overview of this formal-ization process while using DJ’s casestudy to provide examples of theinterventions designed to supportNCC families.

Multidisciplinary AlgorithmAppreciating the literature sup-

port for a multidisciplinaryapproach to end-of-life care,7-9 thegroup began work to solidify thisapproach. It became clear after thefirst several meetings that the groupfirst needed to designate the rolesand responsibilities among theinvolved disciplines. The goal was tooptimize multidisciplinary skill setsand minimize duplication of taskswhile spreading the emotional tolland workload between the involved

disciplines. A flowsheet was devel-oped to visually guide physicians,nurses, nurse practitioners, unitclerks, pastoral caregivers, socialworkers, communication liaisons,palliative caregivers, and hospicestaff into potential roles at eachphase of the Embrace Hope process.

The Embrace Hope interventiondid not begin until the physicianindicated that the patient’s clinicalcondition had deteriorated to afutile situation. Often several con-versations were necessary for familymembers to process the news andbe able to make a decision aboutwithdrawal of life support. Theseinitial conversations were presentedby either the attending physician orthe nurse practitioner as directed bythe attending physician. Early in theprocess of flowcharting the interven-tion, it became clear that manyitems could be accomplished by anumber of staff. Through debate,the group reached consensus onlead individuals for given tasks indi-cated by an asterisk on the diagram.This person was responsible fordriving the completion on this item

or communicating the need for areplacement if he or she wereunavailable. Having multiple peoplequalified for each item ensured thatthe process would not break down ifdeath occurred during off hours orif other clinical situations pulledsomeone in a different direction.

Educational FoundationAs outlined by the Academy of

Critical Care Medicine, competentpractitioners require specific end-of-life education.7 The Institute ofMedicine states that poor end-of-lifecare sometimes happens becausehealth care professionals are nottrained well.11 The NCC end-of-lifeteam believed similarly and proac-tively sought to train providers onend-of-life care. To achieve this edu-cational foundation, 4 hours of con-tent was crafted by themulti disciplinary team. Manage-ment of the NCC required that allfull-time and part-time patient caretechnicians and nursing staff partic-ipate in the training. A total of 5repeat sessions were taught bymembers of the Embrace Hope

Case Study

Once DJ was declared do-not-resuscitate/comfort care, her family wasapproached by the neurological nurse practitioner, nurse, and organ pro-curement representative to discuss the next steps, which included waitingfor further clinical progression to brain death to enable organ donation orimmediate cessation of technological and pharmacological support. DJ’sfamily opted to wait for progression to brain death to enable organ dona-tion. After this plan was determined, the neurological nurse practitionerand the nurse verbally described the Embrace Hope packet and indicatedthat when the logistics of organ donation were adequately reviewed, NCCstaff would approach them again regarding how they envisioned DJ’srespectful death. When asked, Jim (DJ’s husband) initially refused a visitfrom the hospital’s pastoral care representative, indicating that thepatient’s pastor had already been notified.

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team at various times of day toaccommodate day and off-shiftschedules. One session was taped sothat new hires could also receive thetraining. Nurse and technician train-ing included content on the compo-nents of the Embrace Hopestructured process, symptomonset/management during terminalstages, communication techniquesduring grief, cultural considerationsof dying, and institutional resourcesavailable to support end-of-life care.Content from the 2001 End-of-LifeNursing Education Consortium wasused in all educational sectionsexcept the institution-specifictopics.12 Physician education was 1hour and included a brief overviewof the Embrace Hope interventionand evidence-based symptom man-agement given by the palliative carephysician. The suggestions relatedto symptom management that werepresented corresponded to recom-mendations and guidelines from theSCCM and the American Academyof Critical Care Medicine.7,8

Signs In a busy intensive care unit, it is

important for all team members to

be engaged in the end-of-lifeprocess. As outlined in the SCCMguidelines, ensuring an environ-ment conducive to emotional andphysical intimacy is also a goal.7 Tocreate this environment, minimiza-tion of potential disruptions offamily time with the patient wereneeded. To this end, 2 types ofsigns were created that notified

hospital workers of the situation.The first sign contains the words“Please See Nurse Prior to EnteringRoom.” This paper sign was storedwith other Embrace Hope paper-work to facilitate placement on thepatient’s door after the end-of-lifedecision has been made. The secondform of notification is a magnetwith the letters EH, for EmbraceHope. This magnet is placed next tothe patient’s name on the unit’scommunication board. These 2 sim-ple measures ensure that staff at alllevels of service will be aware thatadditional sensitivity with activitiesis needed for these patients andtheir families.

The Setting/The Envelope As stated in the SCCM end-of-

life recommendations, attention todetail can make an enormous differ-ence in how the patient and thepatient’s family perceive the final

Case Study

After DJ’s husband had finished the organ donation interview, the fam-ily returned to DJ’s bedside with questions about next steps. DJ’s nurseretrieved the cloth envelope and obtained the cultural assessment. Usingthe questions on the form, the nurse learned that her girls wanted to painttheir mother’s toenails bright pink (her favorite color) before her death.Given the special needs of her small children, the unit clerk notified thecommunication liaison to assist the girls in purchasing nail polish from thehospital gift shop. Able to focus more fully on DJ with the brief absence ofthe girls, DJ’s mother expressed her desire for the presence of the hospitalpastor to provide prayer at DJ’s bedside. The unit clerk called our pastoralcare representative, who met with the family and was able to assist withcontact of their clergy. The hospital’s pastor remained with the family untilthe arrival of the patient’s pastor. During the conversation with the hospi-tal’s pastoral care representative, DJ’s love of gospel music was mentioned.A CD player was allowed into the room and tunes such as “Amazing Grace”filled the air as the nurse and nurse practitioner focused efforts on main-taining hemodynamic stability and euvolemia.

Case Study

As the family spent quiet time together in the family conference room,DJ’s nurse notified the unit clerk to please place the magnet on the commu-nication board as she obtained the Embrace Hope envelope with paper-work and hung the sign on DJ’s hospital door. Coffee and juice were alsodelivered to the family in the conference room to provide physical comfortto the family as they processed the next steps related to DJ’s care. Whilethis occurred, the neurological nurse practitioner went to daily multidisci-plinary rounds, where all patients’ daily plans were discussed. Social serv-ice, communication liaison, charge nurses, unit management, and casemanagement staff were among those present during this meeting, and allwere made aware of the end-of-life plan for DJ.

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moments.7 The Embrace Hope careteam developed a number of inter-ventions to assist staff in supportingpatients’ family members as theytransitioned through the grievingprocess. The process began in thefamily conference room. This closedroom contained multiple chairs andcouches, tissue boxes, water, phoneaccess, and a wall quilt to create aprivate, comfortable setting toreceive updates. This attention todetail addresses the family’s physicalcomfort as they emotionally processthe death of their loved one.7

Once the family’s physical needswere tended to, an organized rolloutof the end-of-life tools needed to becreated to support efficient and com-passionate execution by staff. Theteam decided on a fabric envelopethat would be stocked with interven-tion materials and centrally stored(Figure 1). The concept of the enve-lope came from a pastoral internwho was included on the team andwho had experience with a similar

item in a hospital in Toledo, Ohio. A local fabric dealer, Boone Fabricsin Columbus, Ohio, was approachedand graciously agreed to donate fabric on an ongoing basis. Clothpouches were created by RiversideMethodist Hospital’s sewing guild.The fabric design was selected forthe huggable nature of the productthat also afforded room to placecards, pictures, and additionalmementos that may have

accumulated throughout thepatient’s stay in the NCC. Paper-work to be completed by the staffor given to the family was separatedinto 2 sections. The first sectionwas to be used right away, and thefamily could refer to the second sec-tion immediately or after theyreturned home.

Embrace Hope Checklist In January 2006, the Joint Com-

mission outlined a national safetygoal to improve handoffs ofpatients.13 Although this concept isnot generally thought to apply to awithdrawal situation, staff in theNCC decided that a communicationhandoff tool would be useful tostandardize end-of-life care. Appre-ciating the number of staff thatmight be involved in providing vari-ous interventions, a paper checklistwas created and served to supportan organized transition for staff andfor patients’ families (Figure 2). Thechecklist is kept with the bedsidepaperwork and can be written onby staff from any discipline.

As actual care does not alwaysfollow a planned algorithm, thechecklist ensures that all components

Figure 1 Folder and grief packet. Cloth folders were created to be approximately 1⁄2 inch (1.27 cm) larger than a 2-pocket paper folder. Contents were secured with afold-over flap extending one-third of the way down the front and secured with eithera button or a strip of Velcro.

Case Study

DJ’s physician arrived at the patient’s bedside and was updated onevents to date. Jim had gone off the unit with his daughters to get some-thing to eat. The doctor reviewed the physical deterioration to brain deathand the plan for getting a second opinion from the neurologist to verify theclinical progression to brain death with DJ’s mother. DJ’s nurse was able toprovide the “What to expect—Brain death” educational sheet to Jim uponhis return, and DJ’s mother used it to describe what the neurosurgeon hadreviewed with her. Side rails were lowered, DJ’s hands were made accessi-ble, tissue boxes were provided, and technology was hidden or removed asappropriate to further increase accessibility of the patient.

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focus care and enables staff to feelconfident that all the necessarysteps have been taken for thepatient, leaving more time to spendcomforting the family.

Cultural/Spiritual Assessment An additional way to provide

comfort is to involve the patient and

the patient’s family in defining whata “good death” means to them. Thisprocess begins by staff understand-ing the family’s cultural beliefs andexpectations.7,9 Evidence shows thatfamilies are more satisfied when cli-nicians spend time listening to andvaluing the families’ input regardingtheir desires for their loved one dur-ing the dying process.

Spirituality also plays an impor-tant role in end-of-life coping andshould not be strictly defined as reli-gion.8 In order to respect and honorthe dignity of each family’s culturaland spiritual beliefs, the NCC staffdeveloped a cultural needs assess-ment. Through baseline subjectivedata obtained from staff, it was clearthat beginning these conversationswas challenging for some NCCnurses. To minimize this discomfort,a structured format was created tobegin the process of engaging thefamily in defining what they neededfrom us to support the respectfuldeath they wanted. As we aimed fora succinct process, The End Of Life/Cultural Assessment was developedby using the pastoral care depart-ment’s cultural expertise and contacts(Figure 3—available online only).The assessment addresses 3 maintopics: religious/spiritual practices,specific beliefs about illness/death,and what is most important to thepatient/family at this time? Gener-ally this assessment is reviewed bythe physician/neurological nursepractitioner/nurse initially but asother disciplines interact with thefamily, additional requests often sur-face. The awareness and use of familypreferences assist all staff in imple-menting the plan of care to make thejourney through death a positiveexperience for the patient’s family.

of the Embrace Hope interventionare completed, no matter the orderof implementation or the shift pro-viding the care. The checklist con-sists of 12 items that are completedfrom start to finish but in any order.This time is very emotional for allfamily and staff involved in the careof the patient. This checklist helps

Figure 2 Shift checklist.

Abbreviations: DNR, do not resuscitate; ID, identification; LOOP, Lifeline of Ohio Organ Procurement, Inc;NCC, neurocritical care unit; UC, unit clerk.

Embrace Hope Checklist:

� 1. NCC information given to family

� 2. Cultural Assessment and Evaluation of family readiness form completed and placed in blue bedside chart

� 3. DNR status determined

� 4. Brain death determined or decision to withdraw made

� 5. Pastoral Care/LOOP notified

� 6. Evaluate need for pallative care

� 7. “What to Expect During This Transition” brochure given to family

� 8. Embrace Hope cloth envelope with patient ID label placed on shelf over thinned charts (envelope includes “Hope in Remembering” poem, hand-tracing card, and“A Lock of Love” packet)

� 9. Sign placed on patient room door and magnet placed on white board identifying “Embrace Hope” patient

� 10. Explanation of hand tracing and/or “A Lock of Love” provided to family and verbal consent documented on flow sheets as appropriate. Obtain snippet of hair/hand tracing for family with as little or as much family participation as they desire.

� 11. At time of death, after patient has been pronounced, Pastoral Care Bereavementpacket added to Embrace Hope cloth envelope. Remove patient ID label from front of envelope and give to primary family contact. (Pastoral care will provideparking passes to family.)

� 12. Unit sympathy card with seed packet attached to the violet tab in the blue chart for signatures, and after the patient discharges will be kept in metal bin byUC desk and mailed to family by UC or communication liaison 5 days after patient is discharged from unit.

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Symptom BrochureProviding physical, emotional,

and spiritual care for dying patientsand their families can be quite over-whelming to staff members. Clearand explicit explanations from theclinician on what to expect nextmay alleviate anxiety and refocusfamily members’ expectations.7

Communication that focuses onpreparing the patient and thepatient’s family for the withdrawalprocess is therefore essential.8,9

With DJ’s physical and spiritualneeds addressed for the moment,the staff focused on teaching Jimand DJ’s family about what toexpect as time progressed. To assistwith this dialog, a brochure (Figure4—available online only) wasdesigned by the Embrace Hopeteam to help families understandsimple physiological changes thatcan occur during the transitionfrom life to death. For some fami-lies, this may be their first experi-ence of loss. For others, thisexperience may trigger past emo-tional turmoil, regret, or unresolvedgrief. Some may see death as a wel-come relief from suffering; othersmay focus on small external detailsto help them cope during this time.

Although each patient’s circum-stance is unique, the brochure dis-cusses common signs andsymptoms of the dying processsuch as pain, confusion, decreasedresponsiveness, and changes inbreathing and vital signs. In situa-tions where withdrawal or with-holding of care is expected, thisbrochure is reviewed and cus-tomized by the staff to reflect thepatient’s unique situation.

After an initial pilot of thisbrochure, the Embrace Hope com-mittee realized that brain deathrequired a separate educationalsheet, given the unique progressionof events. This sheet also was cre-ated (Figure 5—available onlineonly). Whether brain death, with-drawal, or withholding care are thecircumstances surrounding death,practical comfort measures areincorporated during this review andfamilies are encouraged to partici-pate in their loved one’s care as theywish. Families were taught aboutwhat to expect during the dyingprocess, and staff modeled support-ive behaviors during this time. Withthis support and education, the goalwas to support families in offeringthe gift of presence that can be so

meaningful as they look back onthis time in their lives. To this end,siderails are lowered, monitoringdevices are removed or blockedwithin the room, and opportunitiesfor families to provide care orengage in reminiscing dialog areencouraged.7,9

Love Locks To continue perfecting the idea

and project plan of the EmbraceHope intervention, the multidisci-plinary team met on many occa-sions to decide what they could doto give families tangible positivememories of their loved one. Theteam decided that something thatfamily members could hold in theirhand or that could be placed in thesoft quilted folder to hug would besomething that could be cherishedover time. The idea developed intohaving family members remove alock of hair as a remembrance oftheir loved one.

Removing a lock of hair from adying loved one was a commonpractice in the Victorian era.6 Thehair was then braided and placedinto lockets or made into otherremembrance keepsakes. At ourinstitution, this method was mod-ernized in the labor and deliveryarea with infant death. Emulatingthis concept, the team decided touse a “Love Lock” card.

Appreciating the diversity of thefamilies that we would be support-ing, the team decided to make itmandatory to obtain and documentverbal consent from the family toremove the lock of hair. Doing sowould prevent any misunderstand-ing and emphasize respect for cul-tural or religious practices that maydisapprove of the removal or cutting

Case Study

When Jim was initially presented with the concept of Love Locks, hedeclined the offer. But after discussions with DJ’s mom, Jim was able toacknowledge that he had 2 young daughters to consider. After painting thetoenails of their mother under the watchful eye of an aunt, the socialworker helped Jim approach the girls about the hair clippings. Both of thedaughters stated a desire to have this keepsake. Assisted by the socialworker and bedside nurse, the girls each selected a small section of theirmother’s beautiful curls, tied them with blue ribbon, and cut sections tobring home as a memory of their mom. According to Jim, the 2 girls sleptwith their mother’s lock of hair under their pillows every night.

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of the patient’s hair. Selection of dis-crete areas, such as the back of thepatient’s head, and limiting the num-ber of samples to 1 or 2 served tominimize the cosmetic impact of thisprocedure.

HandprintsGiven the limitation of potential

hair samples, another process wasconceptualized to provide lastingmemories for large families such asDJ’s. One of these ways was to offerto create a handprint of a loved one(Figure 6—available online only).After the hospital noise is gone andthere are only memories, continuedgrieving occurs. Times of reflectioncan be helpful and healing.7,9 Viewingthe handprint of one whom we lovedcan generate thoughts of how thatperson touched our life. A poem,created by an Embrace Hope teammember, was included in the back-ground of the handprint to encour-age the hope that can happen inremembering.

Five poem sheets were added toeach premade packet with extra poemsavailable in a central area should addi-tional copies be necessary. The bold-ness of the printed background poemwas adjusted down so that it did notoverpower the loved one’s handprint.Cardstock in lavender and blue wasacquired to support the handprint andimprove its longevity. The color of thepaper enabled contrast to the Ver-samark oil print that became theprocess. This technique minimizedmess and resulted in a piece of artworthy of framing.

Grief Information/Family Note/Seed Packet

Often the hardest aspect of thegrieving process comes later, as

families return home to their lives,where they are greeted with con-stant reminders of loved ones. Inaccordance with JCAHO recommen-dations for bereavement processes,14,15

the members of the Embrace Hopeteam wanted to support this transi-tion to home after a loved one’s death.The first solution was to provide a2-pocket folder filled with practicalitems and grief support information.Practical items included how to cre-ate an obituary, create memorials,and manage holidays/anniversaries/special occasions (available fromwww.ohiohealth.org/embracehope).Local grief support groups and theirphone numbers were also includedfor reference; these were antici-pated to be useful after the activityof postdeath care had calmed andwhen the concept of the family’snew reality might hit.

In addition to these practicaltools, the staff wanted to communi-cate to the families that we caredenough to remember their lovedone. To accomplish this, 2 items areremoved from the quilted packetand saved until after the familieshave gone home. These items are acondolence card for the family (Fig-ure 7—available online only) and apacket of seeds (see Figure 1). Thecondolence card (a concept sup-ported in the SCCM guidelines7)carries the same quilt pattern as therest of the items in the packet and iskept on the unit for a period of 1 to2 weeks after the patient’s death.This time frame gives staff time tosign the card. Additionally, sendingthe card 2 weeks after the deathincreases the chance that receiptwill occur during a time less likely tobe filled with postmortem activities.Placed inside the card was a small

packet of wildflower seeds encased ina dark blue velvet bag. The seed packetwas selected by the Embrace Hopeteam as a live remembrance thatwould live, grow, and flourish inhonor of their lost family member.

Ordering/Preparing the PacketThe concept of Embrace Hope

was unique, but actualization of theprocess was daunting at times. Inaddition to outlining the implementa-tion of care, a process to sustain thepreparation of support material neededto occur. Preparing the packets forthe families is possibly the most time-consuming portion of this initiative.An administrative assistant who over-saw a group of our hospital volunteerscoordinated the packet preparation.A sample packet was created as a tem-plate for the volunteers and is perma-nently kept in a plastic filing box forongoing reference. “Extra” itemsneeded for families, such as “Lock ofLove” cards, “Embrace Hope” poemcards for handprints, and additionaltools are also kept in the plastic filefolder housed at the unit clerk’s desk.(Versamark stamp pads are availablein craft stores. One hundred seedpackets can be purchased for $1.50per packet from Forever Wildflower,Inc, Westcliffe, Colorado.)

Future DirectionsAfter successful implementation

of the Embrace Hope intervention inthe NCC, a pilot for a formalizedorder set for withdrawal of care wasestablished (Figure 8). Evaluationsbefore and after the Embrace Hopeintervention were completed by staff(physicians, nurses, technicians) andindicated statistically significantchanges in staff members’ perceivedability to provide a “good death.”

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Figure 8 Withdrawal order set.

+ Page 1 of 1 +

DATE:__________________________ TIME:_____________________ ALLERGIES/REACTION: ___________________________________________________________________________________________ NKA ___________________________________________________________________________________________

INSTRUCTIONS: 1) Select all orders that apply, 2) Completely fill in the blanks, 3) Scan to Pharmacy, 4) Place original on chart, 5) These orders may need to be individualized to meet the needs of the patient as determined by the physician.

Practitioner Signature: _________________________ Practitioner Printed Name: _________________________ Pager: __________________

UNIT COORDINATOR/HOSPITAL STAFF USE ONLY: Check appropriate box below for any “STAT” or “NOW” order(s) written above. Cross out remainder of sheet before scanning to Pharmacy.

MR-1048 (4-09)

CRITICAL CARE WITHDRAWAL PHYSICIAN ORDERS

Patient Information Label

CRITICAL CARE WITHDRAWAL PHYSICIAN ORDERS

STAT NOW

I. END OF LIFE CARE: (e.g., < 72 hours)

a. Begin Embrace Hope Packet

b. Code Status: DNRCC – Comfort Care

c. If patient admitted within 24 hours (coroner’s case)

DO NOT discontinue invasive catheters/lines.

d. Discontinue vital signs. Observational vital signs only.

e. Discontinue telemetry, pulse oximetry, medications, labs,

x-rays and scans, TED Hose, Sequential Compression

Devices, restraints, respiratory treatments, Physical

Therapy, Occupational Therapy and Speech Therapy.

f. Maintain IV fluids at KVO

g. Discontinue OG/NG and tubefeeds

h. Intracranial Pressure Monitoring:

clamp and discontinue monitoring of

ventriculostomy

discontinue Camino monitoring

i. At time of death, RN may note absence of vital signs and

notify physician. Physician may give telephone order to

pronounce patient’s death. Notify attending physician of

patient’s death. (Policy P-120-R)

j. Open visitation

k. Pet visitation p.r.n. (Policy I-640-R)

l. Notify eICU to change level of care

m. Artificial tears to both eyes p.r.n. dryness

n. Artificial saliva p.r.n. mouth dryness

II. PAIN / DYSPNEA:

a. Heat or cold application prn

b. Hydromorphone (Dilaudid) 1 mg IV/SQ 15 minutes prior

to extubation and then every 3 hours ATC. May repeat

dose every 10 minutes p.r.n. signs of pain/dyspnea

OR c. Morphine 6 mg IV/SQ 15 minutes prior to extubation

and then every 10 minutes p.r.n. signs of pain/dyspnea

OR d. Morphine 10 mg IV/SQ 15 minutes prior to extubation

and then every 10 minutes p.r.n. signs of pain/dyspnea

III. ANTIANXIETY / AGITATION/ DYSPNEA:

a. Haloperidol (Haldol) 1 mg IV/SQ 15 minutes prior to

extubation and then every 3 hours ATC. May repeat dose

every 15 minutes p.r.n. anxiety/agitation/dyspnea

OR b. Ativan 2 mg IV/SQ 15 minutes prior to extubation and then

every 10 minutes p.r.n. anxiety/agitation/dyspnea

OR if concern of seizure: c. Valium 10 mg IVP 15 minutes prior to extubation then

every 1 hour p.r.n. anxiety/agitation/dyspnea

IV. SECRETIONS / AIRWAY:

a. Discontinue ventilator and terminally extubate. Titrate

supplemental oxygen (FiO2) per nasal

cannula/mask/rebreather mask as needed for

dyspnea/comfort care

b. Oral suction per patient/family comfort p.r.n.

c. Glycopyrrolate (Robinul) 0.2 mg IV/SQ 15 minutes prior

to extubation and then every one hour p.r.n terminal

secretions

OR

d. Atropine Ophthalmic Drops 1% Two drops SL 15 minutes

prior to extubation and every one hour p.r.n terminal

secretions

V. CONSULTS:

a. Pastoral Care

b. Social Services

c. Palliative Care

VI. ADDITIONAL ORDERS:

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A “good death” was defined as adeath that was free from avoidablepain and suffering, consistent with apatient’s wishes, and consistent withethical, cultural, and clinical stan-dards.11 After the end-of-life inter-vention was implemented,practitioners also noted a statisti-cally significant decrease in per-ceived barriers to their ability toprovide end-of-life care (see Table). Atotal of 74 surrogates, (the patient’snext of kin) were also queried aboutthe end-of-life care provided in theNCC. Thirty-eight surrogates com-pleted surveys before the interven-tion and 36 surrogates completedsurveys after the intervention. Statis-tically significant changes in the per-ceived emotional support andoverall care provided were noted onfollow-up surveys. Decreased vari-ability was noted by surrogates inregard to symptom control, commu-

nication, and emotional supportprovided by NCC staff (Figure 9).We intend to publish detailedresearch results, but that work isstill underway.

The success of the EmbraceHope intervention and the pilotprocess of the withdrawal order setwithin the NCC has prompted otherunits within the hospital to createsimilar processes to support theirpatients. Currently the inpatient

palliative care unit and several othercritical care units are customizingthe process to reflect the personnelavailable and the needs of their spe-cific populations of patients.

ConclusionsThrough hard work and empha-

sis on supporting patients and theirfamilies at the end of life, qualitycare can be provided within thewalls of inpatient critical care units.Emphasizing the skill sets of anentire multidisciplinary teamenables a structured interventionthat optimizes caring whileenabling a manageable workflowfor team members. Formal stafffeedback from the interventionindicates that providing a struc-tured intervention served to coordi-nate an end-of-life plan that enableda decrease in the moral distress ofstaff. In the words of Dame CicelySaunders, “How one dies remains inthe memories of those who liveon.”16 Through the transition of crit-ical care to caring critically, our

Table Comparison of 39 practitioners’ results: before vs after

Question

Avoidable pain and suffering

Accord with patient’s wishes

Consistent with clinical standards

Consistent with cultural standards

Consistent with ethical standards

Mismatch of expectations

No advance directive

Time pressure

Lack of end-of-life procedure

Discomfort with subject

Beliefs about pain management

Poor symptom management

Prolonged aggressive treatments

P

.03

<.001

.002

.003

.002

.10

.007

<.001

<.001

<.001

<.001

<.001

<.001

Case Study

DJ’s husband assisted with obtaining handprints for himself and hisgirls. DJ was still alive during the process, which emphasized the conceptof remembering her life. A clipboard provided support for the paper as herhand was first pressed into the inkpad and then onto the cardstock. Fiveadditional handprints were collected for DJ’s parents and siblings. All com-pleted hand prints and hair clippings were placed in the fabric envelope forsafekeeping. Shortly after this process, DJ was clinically declared braindead. With side rails down, her hands and her feet with painted toenailswere held and stroked by the family that loved her. Her pastor was presentand led the final rendition of “Amazing Grace” sung by family and staff.Afterwards, DJ was wheeled down to surgery, where she donated her lungs,heart, kidneys, and liver to extend the lives of others.

d•tmore�To learn more about end-of-life care, read“Nurses’ Perceptions of End-of-Life CareAfter Multiple Interventions for Improve-ment,” by Inghelbrecht et al in the Ameri-can Journal of Critical Care, 2009;18:263-271.Available at www.ajcconline.org.

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desire is to share our success toenable more positive memories forfamilies of intensive care patientsreceiving end-of-life care so that theytoo can Embrace Hope. CCN

Financial DisclosuresNone reported.

References1. Good Death. Clinical Practice Guidelines

for Quality Palliative Care. http://www.nationalconsensusproject.org/guideline1.pdf. Accessed November 7, 2009.

2. Birkmyer JD, Birkmyer CM, Winnburg DE,Young JD. Leapfrog Safety Standards: Poten-tial Benefits of Universal Adoption. Washing-ton, DC: The Leapfrog Group; 2000.

3. Zimmerman JE, Wagner DP, Draper EA,Wright L, Azola C, Knaus WA. Evaluation ofacute physiology and chronic health evalua-tion III predictions of hospital mortality inan independent database. Crit Care Med.1998;26:1317-1326.

4. Teno JM, Clarridge BR, Casey V, et al. Fam-ily perspectives on end-of-life care at the lastplace of care. JAMA. 2004;291(1):88-93.

5. Knaus W, Lynn J. A controlled trial toimprove care for seriously ill hospitalizedpatients: the study to understand prognosesand preferences for outcomes and risks oftreatments (SUPPORT). JAMA. 1995;274(20):1591-1598.

6. Mosenthal AC, Murphy P, Barker L, LaveryR, Retano A, Livingston D. Changing theculture around end-of-life care in thetrauma intensive care unit. J Trauma. 2008;64(6):1587-1593.

7. Truog RD, Cist AFM, Brackett SE, et al. Rec-ommendations for end-of-life in the inten-sive care unit: the ethics committee of theSociety of Critical Care Medicine. Crit CareMed. 2001;29(12):2332-2348.

8. Truog R, Campbell M, Curtis R, et al. Rec-ommendations from end-of-life care in theintensive care unit: a consensus statementby the American Academy of Critical CareMedicine. Crit Care Med. 2008;36(3):953-963.

9. Medina J, Puntillo K. AACN Protocols forPractice: Palliative Care and End-of-Life Issuesin Critical Care. Sudbury, MA: Jones andBartlett; 2006.

10. Family Perceptions of Quality of Care at Endof Life. (2006) Health Policy, Health Reform,and Performance Improvement.http://www.commonwealthfund.org/Content/Performance-Snapshots/Experiences-with-Care/Family-Perceptions-of-Quality-of-Care-at-End-of-Life.aspx. AccessedJanuary 30, 2009.

11. Working Together: We Can Help People GetGood Care When They Are Dying. Instituteof Medicine. http://www.nap.edu/catalog/9798.html. Accessed November 7, 2009.

12. Peaceful Death: Recommended Competen-cies and Curricular Guidelines for End-of-Life Nursing Care. American Association ofColleges of Nursing. http://www.aacn.nche.edu/publications/deathfin.htm. AccessedNovember 7, 2009.

13. Patton K. Hand-off Communication: PracticalStrategies and Tools for JCAHO Compliance.Marblehead, MA: HCPro, Inc; 2006. http://www.hcmarketplace.com/prod-428.html.Accessed November 7, 2009.

14. Anderson AH, Bateman LH, Ingallinera KL,et al. Our caring continues: a bereavementfollow-up program. Focus Crit Care.1991;18:523-526.

15. McClelland ML. Our unit has a bereave-ment follow-up program. Am J Nurs.1993;93:62-68.

16. Teno J, Casey VA, Welch LC, Edgman-Levi-tan S. Patient-focused, family-centered end-of-life medical care: views of the guidelinesand bereaved family members. J Pain Symp-tom Manage. 2001;22(3):738-751.

Figure 9 Mean response to domain F questions by 38 surrogates before and 36surrogates after the intervention. Asterisk indicates significant difference betweengroups (P< .05).

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Case Study

At DJ’s memorial, a nephew read the handprint poem aloud, reflectingthat her death enabled others to embrace hope for a better life. The girlstold stories of their nail polish selection with friends. “Amazing Grace”played softly in the background as the priest shared stories he had heardabout DJ as he stood alongside family in the final hours at the hospital.Family members laughed as he spoke of her pie-eating antics when she wasa young girl at a family picnic. They smiled when he spoke of her compas-sion for others and sense of humor. Tears flowed when he spoke of the lifetaken too soon. In a letter to the unit several weeks after DJ’s death, Jimshared his appreciation for the gentle, consistent care that the NCC hadprovided to his wife and family in those final hours. We could not alter theultimate outcome, but we did ease the process through our caring profes-sionalism. Hope for a future was still a dim thought, but the glimmer wasthere for him to embrace as time healed.

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CE Test Test ID C1013: Embrace Hope: An End-of-Life Intervention to Support Neurological Critical Care Patients and Their FamiliesLearning objectives: 1. Discuss relevant research findings in end-of-life care 2. Define the term “good death” as outlined in research findings and identify thecomponents that affect patient and family perceptions of a “good death” 3. Describe the interventions included in the Embrace Hope plan of care

Test answers: Mark only one box for your answer to each question. You may photocopy this form.

1. What percentage of patients admitted to intensive care units in the UnitedStates die annually?a. 5% to 10%b. 10% to 15%c. 10% to 20%d. 20% to 25%

2. The 2008 consensus document released by the American Academy of CriticalCare Medicine identified which of the following as the comprehensive idealfor end-of-life care?a. Specific intensive care team for patient deathsb. Offering a variety of ventilator withdrawal techniquesc. Learning communication skills to support patients and familiesd. Patient- and family-centered decision making

3. As part of implementation of the Embrace Hope intervention, educationregarding end-of-life care was provided to which groups?a. Patient care technicians, nursing staff, and physiciansb. Patient care technicians and nursing staff onlyc. Nursing staff and physicians onlyd. All members of the neurological critical care unit staff

4. Which of the following best describes the checklist used with the EmbraceHope intervention?a. The items on the checklist are listed in order of importance and are to be com-

pleted in that order.b. The items in the checklist can be completed in any order.c. The neurological nurse practitioner is responsible for completion of the checklist.d. The checklist applies to nursing staff only, and is not a tool used by staff from

other disciplines.

5. Questions related to the families’ specific beliefs about illness and deathare part of which Embrace Hope intervention activity?a. Background information collection toolb. Multidisciplinary algorithmc. Cultural/spiritual assessment toold. Symptom brochure and information guide

6. Which activities are performed specifically to support families in offeringthe gift of presence to their dying loved ones?a. Lowering side rails and removing monitoring devicesb. Allowing family pets to be present in the patient’s roomc. Allowing family members to be present when the patient is extubatedd. Removing a lock of hair from the patient

7. In addition to the “What to Expect” brochure for patients’ families, the EmbraceHope team created a separate educational sheet to explain what process?a. Transitioning from resuscitation to dyingb. Brain deathc. Withholding cared. Withdrawal of care

8. What specific reason did the Institute of Medicine identify to explain why poorend-of-life care sometimes occurs?a. Health care clinicians are too busy to provide the necessary emotional support.b. Intensive care units are too noisy and impersonal to allow families the needed privacy

and personal time.c. Health care professionals are not trained well in providing care at this particular time.d. Families are not allowed to participate in decision making as much as they desire.

9. In order to minimize potential disruptions of family time with the patient, theneurological critical care unit staff did what?a. Removed restrictions to visiting hours, number of visitors, and age limitationsb. Placed a special sign on the patient’s doorc. Moved the patient receiving end-of-life care to a more secluded area of the unitd. Provided meals and snacks for families in the unit’s conference room

10. The Embrace Hope paperwork is divided into what 2 sections?a. What is used immediately and what is used as a reference for the family after the

patient’s deathb. What is to be filled out by the staff and what is to be filled out by the patient’s familyc. What is to be completed by the nursing staff and what is to be completed by the other

members of the multidisciplinary teamd. What is used when support is withheld and what is used when support is being with-

drawn

11. Which of the following statements is true regarding the “Love Locks” portion ofthe Embrace Hope intervention?a. Although nursing staff may assist in the process, a member of the patient’s family

must cut the lock of hair.b. This method of creating a remembrance keepsake was chosen because it is universally

accepted by all religions and cultures.c. Removal of a lock of hair for this purpose requires only verbal consent be obtained

and documented.d. Locks of hair are removed in patients who are 16 years of age or younger only.

12. The folder sent home with Embrace Hope families includes which of the following?a. A framed copy of their loved one’s handprint with the poem backgroundb. A condolence card signed by members of the neurological critical care unit staffc. Ideas and suggestions for creating memorialsd. A small packet of wildflower seeds in a blue velvet bag

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