JOURNAL OF PALLIATIVE MEDICINEVolume 4, Number 1, 2001© Education Development Center, Inc.

Mutual Developmental Benefits for Teen Volunteers and Persons at the End of Life

ANNA L. ROMER, Ed.D.

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THE AGE-OLD QUESTIONS posed by Paul Gauguinin his 1897 masterpiece depicting the life cycle,

“D’où venons-nous? Que sommes-nous? Où al-lons-nous?” [Where do we come from? What arewe? Where are we going?], are particularly com-pelling for two groups of people: adolescents andthose facing the end of their lives. Adolescents aremoving out of childhood and into the wider worldof adulthood with the key task of developing anidentity. While family continues to be important,peers and the values of the larger society becomeequally salient as adolescents work to find theirplace in that society. For a person nearing the endof life, at a time when the larger society has no com-monly held answers to these questions, the ques-tions themselves can regain personal urgency.Given these existential and developmental chal-lenges, bringing individuals from these two groupstogether for companionship can offer an opportu-nity for growth and discovery on many levels.

In this issue, we are featuring The Hospice ofthe Florida Suncoast’s Hospice Teen VolunteerProgram, which recruits teens to support the ac-tivities of the hospice in a variety of ways, includ-ing matching teens with patients near the end oflife for companionship, practical help, and con-ducting life reviews. Sandra Mahood and otherstaff at The Hospice of the Florida Suncoast in Pinellas County, Florida, have collaborated with teachers and administrators at area highschools to create opportunities for service-learningthrough the hospice’s programs. Sandra Mahooddescribes the genesis of that program, which nowhas 250 adolescent volunteers who serve in nurs-ing homes and the hospice residences or mentorchildren who have experienced a loss. They alsodo office work and participate in fund-raisingevents. Ms. Mahood reflects on the particular con-

ditions that have led to this program’s growth, aswell as what sustains it, and the elements that oth-ers need to consider when planning intergenera-tional hospice volunteer efforts. Such efforts areborn out of the pragmatic recognition of the re-silience and durability of the grandparent-grand-child alliance as well as a sense that these twogroups have untapped talents that could be minedfor their mutual benefit.

Developmental psychology offers a theoreticalframework that can inform efforts to train adoles-cents to work with people at the end of their lives.If we assume, as recent developmental theorydoes,1–3 that interdependence among people is thegoal of healthy development—rather than a cari-cature of independence that devalues relationshipsand any sign of vulnerability—it makes room forrecognizing how much people who are dying mayhave to offer others. This framework expands theone-dimensional image of dying patients as thosewho are solely the recipients of care.

DEVELOPMENTAL THEORY AND ITS RELEVANCE

For adolescents, the process of developing anidentity involves wrestling with these basic ques-tions: “Who am I? What do I value? With whomwill I affiliate? What work will I choose? Howwill I make my life meaningful? What is worthinvesting in? Where will my efforts be welcome?”During this time, adolescents are trying on dif-ferent identities, adopting, adapting, or rejectingthe larger society’s mores and values as they de-cide how and where to locate themselves in thislarger world. These developmental tasks werefirst detailed 50 years ago by Erik Erikson, who

Center for Applied Ethics and Professional Practice, Education Development Center, Inc., Newton, Massachusetts.

built on Freud’s psychosocial theories of devel-opment to introduce the notion of human devel-opment as moving through a series of crises—moments where danger and opportunity coexist.4

Erikson posited eight progressive crisis points,each with different constructive and necessarytensions to be negotiated in relation to family andsociety in order to move on to the next stage. Itwas Erikson’s focus on identity development asthe key task of adolescence that gave birth to theterm “identity crisis.”5

Not surprisingly, Gauguin’s questions regainimmediacy when one contemplates the end of life.Ira Byock has described the importance of life clo-sure and offering people nearing life’s end the op-portunity to take stock, say goodbye, and find ac-tivities and rituals that allow for an affirmation thatone’s life has had meaning.6 Erikson described thisfinal stage as a tension between ego integrity ver-sus despair. For this final stage, Erikson named re-nunciation and wisdom as the strengths or virtuesthat emerge from a successful negotiation of thisstage.7 Harry Moody criticizes contemporary waysof framing aging, including developmental lifespan theory, for a “failure to articulate a philo-sophical notion of meaning across the life span.”He offers a densely argued philosophical rumina-tion on the meaning of life and old age, and sug-gests that one needs to recognize and connect threelevels of meaning—individual, collective, and cos-mic. Moody advocates for “a reappraisal of the roleof activity and contemplation in the modernworld,” and suggests that attending to what “theaged can give us: a reminder, perhaps of the final-ity of life . . . could be a precious gift for those whocan receive it.”8

Regardless of one’s stance on stage theory, it istragic to be made marginal, not to be listened to,or to have one’s wisdom remain unspoken be-cause there has been no context or conversationto elicit it. In a culture where many elders nolonger live near their families and are not in dailycontact with the younger generations, this needto maintain a meaningful link to earlier genera-tions becomes even more pressing. Retirementcan be lethal in a work-obsessed society wherehow busy one is correlates to one’s status.

THE NEED FOR MEANING AND RELATIONSHIP

Both elders and teens need to feel meaningful.Both need to make contributions to the commu-

nity that the community then honors as valuable.Lyn Brown and Carol Gilligan’s research on girls’development established a link between the pres-ence of voice and psychological resilience.9 Thisstudy and related research have confirmed thecentrality of relationship and connection to othersfor women’s development and psychologicalhealth.10,11 In philosopher Sally Gadow’s intro-duction to Natalie Rosel’s essay detailing the life-world of a neighborhood of aging individuals,Gadow notes, “Frailty in aging becomes the occa-sion for ‘something common and fundamental—human connectedness and its consequences.’ Theforms of connectedness are the shapes that mean-ing takes when the essence of an individual’s aging is relationship.”12 Thus, another commonbond for members of these two groups may be theimportance of relationship as a medium for mean-ing and development. When physical power andcontrol over one’s body wane, relationships withothers gain even greater value.

Sharing a sense of marginality to the main-stream of life, teens and elders share existentialconcerns, but come to these questions of identityand meaning from opposite ends of the life cycle.In this way, the needs of people facing the end oftheir lives, regardless of age, are a clear matchwith adolescents’ need to be useful, taken seri-ously, and experiment with new roles and re-sponsibilities. A semistructured opportunity tomeet and get to know each other in the contextof a shared activity can bridge the differences indress, vocabulary, lifestyle, values and ways ofmaking sense of the world, such that each canfind solace in the other’s needs and strengths.

In midlife, many find answers to life’s big ques-tions in “work and love,” Freud’s famous wordsabout what really counts in life. Most of us finda sense of meaning in the eyes of our loved ones,some, in the work we engage in and its impacton the wider community. If opportunities forwork and love are limited or made difficultthrough environmental, political, or economicdisturbances, then the fabric of community isstressed and can even unravel. For those who aregravely ill, work no longer serves as an organiz-ing raison d’être; meaning must be found else-where, heightening spiritual and relational con-cerns. And if the larger society does not makespace for teens, offer them constructive opportu-nities to contribute, i.e., meaningful jobs and ed-ucation, then it is not unusual for teens to rejectthat society at great cost to the larger community.For all of these reasons, the larger community has

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a responsibility to join adolescents, listen to themand make space for them to contribute.

LISTENING

The Personal Reflections department includes anessay in which Justin Lo, a Hospice of the FloridaSuncoast Teen Volunteer, reflects on the impactof his volunteer experience. Lo tells of gainingperspective on himself, and seeing his own prob-lems shrink in the context of conducting a life re-view with a man who was dying. Listening to thisman’s telling of his life, one marked by povertyand prejudice, Lo was struck by the man’s radi-ance and appreciation for life. This opportunityto connect in an authentic way, to listen and bemoved by the story of another, develops empa-thy and the capacity to reflect on one’s own ex-perience. These are not firmly established capac-ities that we either have or don’t have, but ratherways of approaching life that can be cultivatedand developed through experience.

When we approach people we are aiming tohelp with respect, curiosity, and a willingness tolearn from them, often they will teach us. It is im-portant to structure the program as a two-waystreet—each group has needs; if those needs areexplicitly recognized and understood by programdevelopers, the program itself will be more suc-cessful. It is also important to keep the person pri-mary, whether it is the adolescent or the personfacing the end of his or her life. Although hospicestaff members are generally advocates of life re-view, not all persons who are dying will want toengage in life review or feel the need to performactivities that others would recognize as closure.Similarly, not all teens will want or be ready tohave personal relationships with dying patients.Any system of categorization, including devel-opmental theory, tends to objectify the personsstudied. To counteract this tendency, it is essen-tial to honor the involved human beings—pa-tients, family members, and teens—as experts ontheir own experience. Building a ramp to makeher home accessible may be what is most impor-tant to a particular patient at that moment in time.As the famous physician Francis Peabody wrotemore than 70 years ago, “The secret of the care ofthe patient is in caring for the patient.”13 Listen,and the hospice patient will tell you what he orshe needs and wants. The staff members in theprogram described here call on their imagina-tions to find a way to harness the strengths andenergy of teens to help meet those needs.

SUPPORTING ADOLESCENTS

Many myths about adolescents persist. Ensur-ing buy-in of the middle generation, the parentsof the teens as well as the staff of the hospice orpalliative care group, is also critical to the successof an intergenerational program. Moving fromthe dependence of childhood into an appreciationfor the relationship between independence andresponsibility is a process that evolves most eas-ily when it is structured so that teens can succeed.Traditionally, teachers and psychologists havebeen interested in measuring actual develop-mental level or what a child could do alone. So-viet psychologist Lev Vygotsky focused on thesocial nature of learning and described the zoneof proximal development as the area a child canfunction at successfully with some help. Per-forming tasks in the zone of proximal develop-ment with support and guidance, the young per-son can function at a more complex level andsolve problems he or she cannot tackle in isola-tion.14 One of Vygotsky’s key contributions is le-gitimizing this scaffolding of growth through di-alogue and social relationships, as an essentialintermediary step to mastery of a skill or new wayof understanding.

Teens need training and the opportunity totake on responsibility with just this kind of sup-port. Many have not held paid jobs before, otherthan an odd babysitting or lawn-mowing job.Some may have worked at a fast food restaurant,but the skill set required for interacting with dy-ing patients is entirely different. For all of thesereasons, a paid coordinator who has an under-standing and appreciation for adolescents is es-sential to the success of an intergenerational pro-gram of this scope.

Part of adolescence is a hunger to make a dif-ference in the life of someone else, to matter, to dosomething meaningful, to be affiliated with some-thing larger than oneself and one’s family. Whenadults join adolescents in activities that the adoles-cents can see are meaningful—meet them wherethey live, so to speak—this engagement can betransformative. But this yearning means that it isincumbent on those adults who seek out and re-cruit teens to take those teenagers seriously and of-fer them meaningful ways to contribute. What is“meaningful” can vary from making soup orValentine’s Day cards for patients to conductinglife reviews or developing a personal relationshipwith a person who is dying. For this reason, coor-dinators need to offer a range of activities that can

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meet both the abilities of the teens involved andthe needs of the hospice patients, with appropriateamounts of adult mentoring and guidance. What-ever the task, evidence that these efforts have madea difference is an important source of data for par-ticipants and program leaders.

ACCOUNTABILITY AND FEEDBACK

Basic issues of accountability and trust are at theheart of any kind of home care for frail peoplewhether provided by a professional or volunteer,and must not be ignored. Asking the patients them-selves for feedback is not a simple question. No pa-tient wants to be labeled “difficult,” and patientsand families may be hesitant to report dissatisfac-tion except in egregious cases because of fears ofalienating the hospice team or jeopardizing accessto services. Continually thinking about evalua-tion—what it is one hopes to measure or learnabout, as well as the most accurate and expeditiousway to do so, is important. Asking people directlyabout their experience works well, as long as theinquirer is alert to subtle cues—such as silence—that there may be a problem.

The next challenge for these programs is to de-velop more careful documentation of the differ-ences that leaders believe the programs are mak-ing. It will be valuable to be able to show moreconsistently what kinds of impact working withpeople at the ends of their lives has on these teens.Similarly, such programs will benefit if they areable to document the effects of oral life historieson their patients nearing the end of life. Or forthose persons who do not participate in life re-view, simply understanding the impact on pa-tients of being matched with a teen volunteer willbe helpful to hospice staff as they develop teenvolunteer programs.

CONCLUSION

The teen hospice volunteer program we havechosen to highlight makes a commitment to tak-ing teens seriously. It has implicitly built in someof what developmental psychologists assert pro-motes constructive identity formation—belong-ing to something bigger than oneself, and havingthe opportunity to do something meaningful forothers who really need it, and so gain an outsideperspective on one’s own life. Many challenges

remain, but much can be learned from the sim-ple act of listening to those who are engaged inthis work.

REFERENCES

1. Belenky MF, Clinchy BM, Goldberger NR, Tarule JM:Women’s Ways of Knowing: The Development of Self,Voice, and Mind. New York: Basic Books, 1986.

2. Kegan R: The Evolving Self: Problem and Process in Hu-man Development. Cambridge: Harvard UniversityPress, 1982.

3. Brown LM, Gilligan C: Meeting at the Crossroads:Women’s Psychology and Girls’ Development. Cam-bridge: Harvard University Press, 1992.

4. Erikson E: Childhood and Society. New York: Norton,1950, 1985.

5. Erikson E: Identity: Youth and Crisis. New York: Nor-ton, 1968.

6. Byock I: Beyond symptom management: Growth anddevelopment at the end of life. Eur J Palliat Care.1996;3:125–130.

7. Erikson E: 1950, 1985; op. cit.8. Moody HR: The meaning of life and old age. In: WhatDoes It Mean to Grow Old: Reflections from the Human-ities. Cole TR, Gadow S (eds.): Durham: Duke Uni-versity Press, 1986, pp. 11–40.

9. Brown LM, Gilligan C: 1992; op cit.10. Jack D: Silencing the Self: Depression and Women. Cam-

bridge: Harvard University Press, 1991.11. Jordan J, Kaplan A, Baker Miller J, Stiver I, Surrey J:

Women’s Growth in Connection. New York: GuilfordPress, 1991.

12. Rosel N. Growing Old Together: Communality in aSarasota neighborhood. In: What Does It Mean to GrowOld: Reflections from the Humanities. Cole TR, GadowS (eds): Durham: Duke University Press, 1986, pp.199–233.

13. Peabody FW. The care of the patient. JAMA. [1927;88:877–82] 1984;252:813–18.

14. Vygotsky LS. Mind in Society: The Development ofHigher Psychological Processes. Cole M, John-Steiner V,Scribner S, Souberman E (eds): Cambridge: HarvardUniversity Press, 1978.

Address reprint requests to:Anna L. Romer, Ed.D.

Associate EditorInnovations in End-of-Life Care

andSenior Research Scientist

Center for Applied Ethics & Professional PracticeEducation Development Center, Inc.

55 Chapel StreetNewton, MA 02458-1060

E-mail: intleoljournal@edc.org

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