44 Geriatric Nursing Volume 25 Number 1

Irene and Don Lewis

Melen McBride and Mycel Jacob

Irene Daniels and Lillian Davis

This article provides some brief demographic

data on aging, describes anticipatory grief,

and presents two cases of anticipatory grief

involving elders in racial/ethnic minority

groups with some analysis including cultural

values and beliefs and some practical

guidelines. The discussion ends with a useful

process model for improving communications

with elders in racial/ethnic groups and their

families. (Geriatr Nurs 2004;25:44-47)

Irene Daniels Lewis, APN, DNSc, FAAN, and Melen McBride, RN, PhD

Elders and Families inRacial/Ethnic Minority Groups

Anticipatory Grief andChronicity:

January/February 2004 45

ursing practice is science applied to the art of car-ing for others. Most elders and their families, es-pecially those who are members of racial/ethnicminority groups, want nurses who specialize in the

care of elders and other geriatric care providers (OGCPs) toshow some compassion when the discussion centers on theend stages of a chronic illness. Chronic illness is typically acondition or disorder that lasts longer than six weeks, may ormay not result in a disability, and may have a downward tra-jectory. Often, as a chronic illness progresses, the patient’srole and the roles of family members change. Also when achronic illness with a downward trajectory gets to the endstages, some family members may think about the inevitableloss of their beloved elder, whereas others may deny the endstages and need help with role changes.

This article provides some brief demographic data onaging, describes anticipatory grief, and presents two casesof anticipatory grief involving elders in racial/ethnic mi-nority groups (ethnic elders) with some analysis includingcultural values and beliefs and some practical guidelines.The discussion ends with a useful process model for im-proving communications with elders in racial/ethnic mi-nority groups and their families.

DEMOGRAPHICS ON AGING AND HEALTH

The 2000 U.S. Census counted 35 million people aged65 years and older. Close to 16% were members of ethnicminority groups.1 The largest increase in population wasfound among those aged 85 years and older, a subgroupknown to have three or more chronic illnesses or majorfunctional impairment at any given time.1 Contrary to pop-ular belief, only 5% of the elderly are in nursing homes;the rest, including members of racial and ethnic minoritygroups, live in the community.

ANTICIPATORY GRIEF

Lindemann2 first introduced the concept of anticipatorygrief in 1944, and 2 decades later, Aldrich3 defined it as“any grief occurring prior to a loss, as distinguished fromthe grief which occurs at or after a loss.” Sweeting andGilhooly4 restated some salient points in their review arti-cle about both clients and families experiencing anticipa-tory grief. Anticipatory grief is as important as the grievingthat takes place after the death of a loved one, but familymembers are unable to take on the roles involved in be-reavement because the loved one is still alive. The experi-ence of anticipatory grief can include withdrawal anddetachment, as well as caring and love. These feelings arenot mutually exclusive.3,5 Anticipatory grief is actually abehavioral and emotional response to the “awareness ofimpending death and the recognition of associated losses.”6

When elders and their families are engaged in the endstages of a chronic illness, anticipatory grief work may beuseful, if role change is part of the equation. This is an op-portunity for a change agent, such as a geriatric nurse, tohelp a family respond more effectively to the final loss.

Geriatric nurses can help surviving family memberswho have lived by definitive role functions learn to bothexpand and take on new role functions. Survivors will feelawkward and uncomfortable, but geriatric nurses can pro-vide needed support. Likewise, geriatric nurses need to beaware of and supportive of African American and FilipinoAmerican elders who in contrast to European American el-ders, are more likely to abide by a family-centered, ratherthan individual approach to decision making.7

This need is apparent for many racial/ethnic elders wholive with definitive roles and the loss of a racial/ethnicelder would markedly impact the family system. Alsomany African American and Asian American elders, incontrast to European American elders, are more likely toabide by a family-centered approach in decision makingrather than an individual approach.7

Case 1: Mrs. PMrs. P, a 65-year-old African American wife and

mother of five, had a stroke that resulted in residual right-sided paralysis. After the acute phase, Mrs. P. returnedhome. Her geriatric nurse practitioner (GNP) understoodthat this was probably going to be a chronic condition.Mrs. P’s oldest child, Dee, aged 26, was married and hadtwo children. She wanted her mom to help with parentingskills, but Dee knew that such help might not be possiblebecause repeated strokes are common. After much prayerand many teary days and nights, Dee asked Mrs. P’s GNPfor help. Without a doubt, Dee was going through her ownanticipatory grief work. Dee believed the GNP might helpher mom and family, especially her dad, through some rolechanges. Mr. P had only been the wage earner. He did notknow how to pay the bills, cook, clean, or do laundry.

Case 2: Mrs. RMrs. R, an 88-year-old Filipino widow and mother of

six, had a serious stroke and after initial treatment was ad-mitted to a skilled nursing facility. On admission, Mrs. Rwas asked to complete an advance directive. Her familyrequested time to make a decision.

After several days, they reached a consensus not to signa “do not resuscitate” document to ensure that Mrs. Rwould receive thorough and appropriate attention. Twosiblings volunteered to discuss the advance directive withMrs. R who continued to express her preference that thefamily make health care decisions for her. After severalfamily meetings, she eventually decided to declare all herchildren primary decision makers for her care.

DISCUSSION

Interdependence Versus Independence

Traditionally, for multiple reasons (e.g., lack of accessto health care, de facto segregation, and preference),African American families have taken care of their eldersat home as Mrs. P’s family did.8 Also in contrast to

N

46 Geriatric Nursing Volume 25 Number 1

European Americans, African Americans and AsianAmericans value a family approach rather than an inde-pendent, individual approach to decision making.7-10

GNPs and OGCPs can assist family members with rolechanges and help them learn how to perform activities ofdaily living and instrumental activities of daily living asnecessary. Making these physical concrete changes canease family members into anticipatory grief work and helpthem cope with future “truths” about the end stages ofchronic illness.2

Talking and Listening: Helping ActivitiesWhen GNPs and OGCPs interact with elders who are

members of ethnic and racial minority groups such as Mrs.P and Mrs. R, it may be appropriate to adapt an ethno-graphic approach to the relationship. Such an approachmay help GNPs and OGCPs better understand the per-spectives of the patient and family regarding the impend-ing loss. Significant insights can be gained by askingopen-ended questions in a gentle and respectful manner,followed by attentive listening that focuses on the patient’sand family’s experiences during the end stages of achronic illness. Furthermore, many African Americans andFilipino Americans who have strong religious values be-lieve that caring for their elders in the end stages of achronic illness is very important and carries with it thepromise of peace and happiness in eternal life.

Role of Geriatric Nurse Practitioner and OtherGeriatric Care Providers

Some African American and Filipino American familiestend to adhere more strictly to gender roles, and GNPs andOGCPs can assist these families as they undergo role changeswhen the need arises in the trajectory of a chronic conditionor illness. In interactions and conversations with family mem-bers, GNPs and OGCPs can casually mention a case such asMrs. P’s to “give permission” or encourage them to sharetheir particular experiences, beliefs, values, and roles.

Mrs. R’s family experienced anxiety over the realiza-tion that a family approach to decision making was notbeing requested. The decision to delay the request for a“do not resuscitate” order was their indirect way of deal-ing with a different value system until they could sortthings out. Parks11 and Parkes12 suggest that anticipatoryguidance includes sharing accurate information, encourag-ing constructive communication of appropriate feelings,and giving the patient and family an opportunity to resolveany unfinished business.

In some cultures people are more comfortable with in-direct communications or they are more comfortable talk-ing with someone from their own ethnic group. An opendiscussion of issues may be achieved by employing an in-termediary. For example, highly traditional AfricanAmerican and Filipino American families may be more in-clined to express feelings to a respected individual of thesame ethnicity such as a minister or priest, a health care

provider, a trusted friend, or other trusted associate.7-9,13 Itis important for clinicians to use these “cultural bridges”when possible to help build a trusting relationship and pro-vide comfort to the patient and family as anticipatory griefwork unfolds.

INTERVENTIONS AND GUIDES FOR PRACTICE

Nurses are in a unique position14 to customize biopsy-chosocial interventions for anticipatory grief work for pa-tients and families. Because this is often overlooked inpatient-provider encounters, Parkes11 proposes that antici-patory guidance for persons facing imminent personal lossand bereavement could be adapted to help balance the shift-ing behavioral and emotional responses to the grief experi-ence. Listening17 is a powerful tool that can reassure aperson of a caring environment in which feelings associatedwith grief such as guilt and blame, negative characteristicsof relationships, and cultural practices can be explored in anonjudgmental way. Assisting individual family membersto design interactive cultural, social, or spiritual activities inwhich they interact with the chronically ill family membercould provide them with opportunities to prepare for andcope with the end stages of a chronic illness. Identifyingand offering culturally appropriate community resources toracial/ethnic elder patients for a specific concern, such aspastoral care, or educational programs may help ease thedemanding work of anticipated grief.

In ethnogeriatrics or ethnogerontology, a subspecialtythat focuses on ethnic elders,15 GNPs and OGCPs are en-couraged to first increase awareness and understanding oftheir own cultural values, beliefs, and practices and thenlearn about those of their patients and their families.Clinical skills for assisting ethnic elders and their familiesthrough anticipatory grief work need to include culturallyappropriate approaches in all areas, especially in commu-nication. Also clinical practice needs to incorporate cul-tural and religious practices in an intervention plan anddemonstrate sincere respect for culturally based prefer-ences to saying “good-bye” to the elder in the end stagesof a chronic illness. Although chronic illness may prolonganticipatory grief work such that a strain is placed on fam-ily relationships, knowledge of losing an ethnic elder andthe associated anticipated loss need to have a significantplace in our health care today. Why? Because elders in theold-old age group (85 years and older) represent the fastestgrowing and largest segment of the population.

A USEFUL MODEL

According to Kleinman16 each person usually has anexplanatory model or a perspective specific to a health ex-perience or situation. It is associated with possible causesor contributing factors that led to the existing condition. Inthe end stages of a chronic illness, a perspective that isoften aligned with the individual’s cultural belief systemsand practices may improve communication among GNPs,OGCPs, ethnic elders, and their families. The LEARN

January/February 2004 47

REFERENCES1. Administration on Aging. Older population by age: 1900 to 2050; 2000.

Available from: www.aoa.dhhs.gov/aoa/stats/agePop2050Chart-numbers.html.2. Lindemann E. Symptomology and management of acute grief. Am J Psychiatry

1944;101:141-8.3. Aldrich CK. Dynamics of anticipatory grief. In: Schoenberg B, and Peretz D, ed-

itors. Anticipatory grief. New York: Columbia University Press; 1974. p. 60-71.4. Sweeting H, Gilhooly M. Doctor, am I dead? A review of social death in mod-

ern societies. J Death and Dying 1992;4:251-9.5. Rando T. Loss and anticipatory grief. Lexington (MA): Lexington Books;1986.

p. 97-130.6. Zilberfein F. Coping with death: anticipatory grief and bereavement. Generation

Spring 1999. p. 69-74.7. Waters C. Understanding and supporting African Americans’ perspectives of

end-of-life care planning and decision-making. Qual Health Res 2001;11:385-98.

8. Lewis I. African American families: management of demented elders. In: YeoG, and Gallagher-Thompson D, editors. Ethnicity and the dementias. New York:Taylor and Francis; 1996. p. 167-74.

9. McBride M, Parreno, H. Filipino American families and caregiving. In: Yeo G,and Gallagher-Thompson D, editors. Ethnicity and the dementias. New York:Taylor and Francis; 1996, p. 123-35.

10. Superior E. Beliefs held by Filipinos regarding filial responsibility [thesis]. SanJose (CA): San Jose State University; 1993.

11. Parks C. Bereavement: studies of grief in adult life. New York: InternationalUniversity Press; 1986

12. Parkes C. Grief: lessons from the past, visions for the future. Death Studies26:5. p. 367-85.

13. Tompar-Tiu A, Sustento-Seneriches J. Depression and other mental health is-sues: the Filipino American experience. San Francisco: Jossey-Bass; 1995.

14. Blakeney B. I’m a nurse, three words that can change everything. Am Nurse2002;34:4.

15. Department of Health and Human Services. Minority aging: essential curricula con-tent for selected health and allied health professions. Washington (DC): U.S. PublicHealth Services Health Resources and Services Administration; 1990. p. 3-22.

16. Kleinman A. Patients and healers in the context of culture: an exploration of theborderland between anthropology, medicine, and psychiatry. Berkeley (CA):University of California Press; 1999.

17. Berlin E, Fowkes W. A teaching framework for cross-cultural care-applicationin cross-cultural medicine. West J Med 1983;6:934-8.

IRENE DANIELS LEWIS, APN, DNSc, FAAN, is professor and chair ofCommunity Health/Psychiatric Nursing at the School of Nursing, San JoseState University, San Jose, California, and consultant to the StanfordGeriatric Education Center, School of Medicine, Stanford University,Stanford, California. MELEN McBRIDE, RN, PhD, is associate director of theStanford Geriatric Education Center, School of Medicine, StanfordUniversity, Stanford, California.

AcknowledgmentsThe authors gratefully acknowledge the work of Mary S. Harper, RN, PhD,FAAN, Retired Coordinator, Long Term Care Program of the Division ofClinical Research, National Institute of Mental Health, Bethesda, Md. Sheis a tireless advocate for elders, including ethnic elders.

This study was funded in part by grant No. 5D31HP70135-02 from theDepartment of Health and Human Services, Health Resources andServices Administration; Grantee: Bureau of Health Professionals.

0197-4572/$ - see front matter© 2004 Elsevier Inc. All rights reserved.doi:10.1016/j.gerinurse.2003.11.014

L. Listening to the person’s perception of the situation with empathy

E. Explaining your perception of the chronic illnessor chronic disorder

A. Acknowledging and discussing differences and similarities of perceptions

R. Recommending a plan or an action, but not mandating it

N. Negotiating an agreement or plan of action andbeing willing to compromise

model17 can provide such a useful perspective. This is anapproach to communication in clinical encounters.17 Themodel basically includes the following:

The LEARN model encourages GNPs and OGCPs touse open-ended questions in a conversational approach. Asone builds a culturally appropriate exchange between eth-nic elders and families, a direct “complete the question-naire” style communication would be ill advised. Thefollowing are a few questions one might want to ask in aconversational style interview.• What do you think led to the change in your condition?• How have you managed the condition or illness so far?• How can we work together to deal with this condition

or illness?• What traditional cultural approaches have you used

thus far?• What should we aim for in our new action plan?• What is the best time to begin a new action plan?

CONCLUSIONS

As the population of ethnic elders gains increased ac-cess to health care services, GNPs and OGCPs can provideimproved care if they are better equipped to meet the needsof this growing population. There are many complex anddifficult health care challenges that ethnic elders and theirfamily members may face during the end stages of achronic illness. Anticipatory grief work is a behavioral andemotional response that can be useful to GNPs and OGCPswho provide care to ethnic elders in today’s society.

This article used two cases of anticipatory grief involv-ing elders in racial/ethnic minority groups to illustrate an-ticipatory grief work. It also discussed some culturallyappropriate considerations about values and beliefs thatGNPs and OGCPs might want to infuse into their clinicalpractice. Although research-based information in this areaof nursing and health care is limited, there is a growingbody of work on the horizon. Therefore, it behooves us totune into the cultural beliefs and values of the “other,” ifwe want to give improved quality health care to an emerg-ing majority in society’s health care marketplace.