Roadmap for the Last Journey Home Telehealth for End of Life Care

8/8/2019 Roadmap for the Last Journey Home Telehealth for End of Life Care

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improved self-care management, and proactive inter- ventions for positive outcomes.4 The AIPC programpartners the skills and expertise of both spiritual andmedical care practitioners, along with cutting-edgehome telehealth devices to improve symptom man-agement and quality of life for veterans with life-limiting conditions.

Background

In 2000, the Veterans Health Administration (VHA),in its Florida–Puerto Rico Network, implementeda new care model called the Community CareCoordination Service (CCCS). The Florida–PuertoRico Network serves one of the largest veteran pop-ulations (1.7 million) in the country through its7 medical centers, 11 multispecialty satellite clinics,and 33 community-based primary care centers. It

stretches across 19 counties in southern Georgia to60 of 67 Florida counties, all of Puerto Rico, and theUS Virgin Islands. Network leadership identifiedthat 4% of this population was consuming 40% of itsresources. To address this issue, the CCCS expandedthrough a series of pilot projects that used hometelehealth and the newly created care coordinatorrole to enhance care for veterans. Care coordinatorswere multidisciplinary health care professionals,with most (85%) being nurse practitioners andregistered nurses.5

Those populations considered the most likely tobenefit from the new care model were identified ashigh risk (unstable chronic disease), high use (frequenthospital admissions, emergency department visits, andunscheduled and scheduled clinic visits), and high cost(>$25 000 in the year preceding enrollment).Technologies used included both video (telemonitorsand videophones) and nonvideo (disease managementand messaging) devices. The pilot projects were com-pleted in 2002, with results showing a 40% reductionin emergency department visits, 63% reduction in hos-pital admissions, 60% reduction in hospital bed days of

care, improved quality of life, and increased satisfac-tion (93%) with the technology and program services.These results led leadership to expand to other popula-tions that included advanced illness or palliative care,cancer care, and chronic pain.6

AIPC

In 2003, the CCCS initiated a call for proposals for new populations using its well-established care coordination

model. Through this process, the CCCS funded the AIPC program for a 2-year pilot project to determineif the CCCS model would benefit veteran patientswith life-limiting illness. The goals of the projectwere to manage the physical, emotional, functional,and spiritual care needs during the last 2 years of patients’ lives and to foster an earlier enrollment of patients into hospice by educating providers aboutpalliative care. Patients selected for enrollment were

veterans with chronic end-stage illnesses includingdementia, emphysema, heart failure, and cancer.The program has served more than 190 veteranssince its inception in 2003.

The AIPC program uses home telehealth equip-ment such as text-messaging devices, which have apalliative care interactive dialogue that risk stratifiespatient answers for easier management and follow-up(Figure 1), and videophones, which provide face-to-

face real-time psychosocial and spiritual support topatients and families coping with end-of-life issues(Figure 2). Program staff members selected thesedevices because of their successful deployment inother CCCS programs from both patient and clinicianperspectives.5

The types of questions asked on the text-messagingdevices are holistic in nature. The questions aredesigned to monitor physiologic aspects of the patients’disease process, stress and anxiety levels, caregiverburden, end-of-life issues, and spiritual needs assess-ment. Some of the questions are asked each day,

while other questions are asked less often. The spir-itual questions are interwoven throughout the daily question sets. The following are some examples of the spiritual questions:

• How connected do you feel to those you love?• Is there someone you can talk to about your illness?• Do you wonder if you will make it through the

month?• How has your spiritual life/faith changed since

you have been ill?• Would you like to talk with a chaplain?

Patients answer these questions and are taken downa branching logic tree that varies according to theirresponses. Most responses are reinforced to helppatients feel good about themselves and their self-management skills.

In developing the spiritual questions, carefulconsideration was given to patients’ basic spiritualneeds at the end of life; a definition of spirituality was used that is patient and person centered. Thebasic spiritual needs of people when they near the

2 American Journal of Hospice & Palliative Medicine / Vol. 23, No. 5, November 2006



end of their lives are to see that their lives have hadmeaning or purpose, to reconcile relationships, and tolove and be loved.7 Questions developed with this inmind are broad in nature and very significant in help-ing patients come to terms with their own deaths.They span religious and perhaps even cultural cate-chisms. The focus is on spirituality and not religiosity.The model used to define spirituality comes from

Alexander Cairns, PhD, who defined spirituality asconnectedness with self, others, environment (theirwork/interests), and the Other/God.8 In both of thesedefinitions, relationships are the central theme. Thequestions patients are asked help to bring insight intohow they feel they are doing in their relationshipswith those they care about the most.

The holistic nature of the program is demon-strated in the staffing of the AIPC team and in therole of team members. The team has 3 care coordi-

nators: an advanced registered nurse practitioner(ARNP), a chaplain, and a licensed clinical socialworker. A program support assistant provides clericalservices for the program. Care coordination isaccomplished through a strong interdisciplinary team that delivers patient-centered care. The ARNPmonitors the daily responses that patients haveentered on their text-messaging devices. All answersthat fall out of established evidenced-based parame-ters generate “flags” that alert the ARNP that some-thing needs follow-up. The ARNP calls the patientor family member and clarifies the problem or issue,

then sends a progress note using the VHA’s comput-erized patient record system to the patient’s healthcare provider, who then determines the appropriatecourse of action.

The care coordinator can identify emotional,spiritual, or end-of-life issues by talking with thepatient and family or by reviewing responses on thetext-messaging device. Once a need is identified,the appropriate member of the AIPC team addressesthe need by providing appropriate services or referralsto specialty providers, equipment vendors, or commu-nity agencies. The chaplain has a unique role in that

he or she makes the initial contact with the patientand is responsible for enrollment processes, tech-nology instruction, and installation. The chaplainalso determines if the patient would benefit from a

videophone being placed in the home in addition tothe messaging device. Most often, videophones areplaced in homes where there is no caregiver or fam-ily present for the patient. After leaving the home,the chaplain calls the ARNP to discuss patient andfamily needs, home environment, and support systems.

Road Map for the Last Journey / Maudlin et al 3

Figure 1. Text-messaging device.

Figure 2. Videophone. KMEA TV500SP

http://www.kmeagroup.net/



The chaplain provides spiritual and emotional supportto patients and families in coping with the many stressors that develop during this difficult time. Thesocial worker provides guidance in making appropri-ate referrals for services such as home health aides,Meals on Wheels, and other community- or facility-based resources. There is a high degree of trustbetween the nurse practitioner, the social worker,and the chaplain as well as an understanding andappreciation for each other’s roles and value to theteam. This exchange of information, perceptions,and insights by team members enables and developsa foundation for the program team to provide holis-tic care to the patient and family.

Outcomes

During the AIPC program’s 2-year pilot phase, the

team collected data on 100 veterans using a variety of quality, clinical, and business indicators. Datawere collected through the messaging device usingsurvey questions and were also collected by a dataanalyst through the many VHA databases availablefor tracking utilization. Eighty-nine percent of thepatients surveyed thought they had a better under-standing of their medical condition, and 68%believed they were better able to manage their con-ditions at home. Eighty-two percent of the patientswere more satisfied with the communication betweenthemselves, the provider, and the nurses. Ninety-

eight percent reported taking all of their medicationsas prescribed on a daily basis throughout the pilot.Ninety-two percent of the patients in the AIPC pro-gram reported that the technology helped them feelmore connected to the VA hospital and to the mem-bers of the team. This connectedness is so strongthat, in most cases, patients, caregivers, and family members are reluctant to give up the use of thetechnology, even when they have a nurse (from hos-pice) coming into the home weekly. Ninety percentstated that the technology also gave them a sense of security. This is significant considering that one of the most important issues for patients at the end of life is the loss of connectedness they feel to othersand to self.8 A review of 6-month preutilization andpostutilization data showed that the patients hadfewer hospital admissions (66%), fewer emergency department visits (19%), and fewer bed days of care(77%). Total combined admissions and emergency department costs dropped from $151 771 to $25 119.Specific clinical markers related to the palliative

care population also showed improvement, withblood pressure consistently at or below VHA clinicalguidelines (systolic blood pressure of 130 mm Hgand diastolic blood pressure of 80 mm Hg) and gly-cated hemoglobin levels in diabetic patients consis-tently at or below 9.

Discussion

When state-of-the-art health care has done all it can,leaving the patient and family coping with life-limitingillness, hospice and palliative care services become afinal opportunity to provide holistic and compassion-ate care. Hospice and palliative care professionalsstruggle daily with determining when people need tocome to terms with their deaths and who will listenand acknowledge their losses and pain. Who will jour-ney with them as they travel this final road? The lit-

erature reflects that end-of-life-professionals are notinvolved with patients until their deaths are immi-nent.1 The AIPC team works at changing this by itsinvolvement with patients and families and through itseducational efforts to raise provider awareness aboutthe differences between hospice and palliative careand when to refer patients. In the AIPC program, thetechnology helps patients feel connected to the hos-pital and the AICP team, which results in a highdegree of trust between patients, families, and thehealth care team.

Many say that the end of life is a sacred time. The

main goal during this sacred time often is to ease suf-fering. Cooper-Goldenberg stated, “The questions of suffering must be asked from perspectives of faith andcommunity.” Instead of asking, “Why am I suffering?”the questions must be, “How will I suffer?” “Will Idraw closer to family and friends?” “Will I draw closerto my God, and who will be with me on this jour-ney?”7 Holistic care has to do with being on a journey with the patient during this sacred time and findingways to enable others to be on the journey with them.Technology can and is being used to change the“how” of suffering for veterans. The AIPC programhas proven itself to be a successful initiative forcommunity-based hospice and palliative care services,working to change the face of palliative care. The pro-gram continues to meet the needs of veterans andfamilies as a fully integrated clinical service. Each day,program staff members demonstrate the benefits of this uniquely successful approach for enhancingsymptom management and improving quality of lifefor veterans with life-limiting illness.

4 American Journal of Hospice & Palliative Medicine / Vol. 23, No. 5, November 2006



References

1. Hospice fact and figures. National Hospice and Palliative

Care Organization Web site, 2003. Available at:

www.nhpco.org. Accessed November 10, 2005.

2. National Hospice Council, United Kingdom. Hospice

Information Web site, 2003-2004. Available at: www.

hospiceinformation.info/factsandfigures.asp. Accessed April22, 2006.

3. VA transforms end-of-life care for veterans. US Department

of Veterans Affairs Web site, 2004. Available at: www.va.gov/

oaa/flp. Accessed April 22, 2006.

4. Home telehealth special interest group. American

Telemedicine Association Web site, 2005. Available at:

www.atmeda.org. Accessed April 22, 2006.

5. Meyer M, Kobb R, Ryan P. Virtually healthy: chronic disease

management in the home. Dis Manag. 2002;5(2):87-94.

6. Meyer M, Ryan P, Kobb R, Roswell R. Using home tele-

health to manage chronic disease. Federal Practitioner.

2003;20(8):27-30, 36, 41.7. Cooper-Goldenberg J. Spirituality for Late Life (Older

Adult Issues Series). Louisville, KY: Geneva Press; 2002.

8. Cairns A. spirituality and religiosity in palliative care.Home Healthc Nurse. 1999;17:450-451.

Road Map for the Last Journey / Maudlin et al 5

Roadmap for the Last Journey Home Telehealth for End of Life Care

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