@@@@

@@@@

@@@@

@@@@

@@@@

@@@@

@@@@

@@@@

MANAGING ALIFE-THREATENING

ILLNESS

College of Agricultural SciencesCooperative Extension

Prepared by Barbara W. Davis, associate professor, agricultural and extension education,

Ann Marie Spigelmyer, former graduate student, and Phyllis W. Crabtree, M.S.

Earlier drafts of this publication were reviewed by J. Alfred Jones, M.D., Richard H. Dixon, M.D., and Ellen McCrory, R.N.

This publication is available in alternative media on request.

Issued in furtherance of Cooperative Extension Work, Acts of Congress May 8 and June 30, 1914, in cooperationwith the U.S. Department of Agriculture and the Pennsylvania Legislature. L.F. Hood, Director of CooperativeExtension, The Pennsylvania State University.

The Pennsylvania State University is committed to the policy that all persons shall have equal access to programs,facilities, admission, and employment without regard to personal characteristics not related to ability, performance, orqualifications as determined by University policy or by state or federal authorities. The Pennsylvania State Universitydoes not discriminate against any person because of age, ancestry, color, disability or handicap, national origin, race,religious creed, sex, sexual orientation, or veteran status. Direct all inquiries regarding the nondiscrimination policyto the Affirmative Action Director, The Pennsylvania State University, 201 Willard Building, University Park, PA16802-2801; tel. (814) 863-0471; TDD (814) 865-3175.

R5M395 The Pennsylvania State University 1993

I N T R O D U C T I O N

Facing a Life-Threatening Illness ........................................ 4

Reacting to the Diagnosis .................................................. 7

Communicating with Medical Personnel .............................. 8

Getting the Help and Care You Need ................................ 10

Your Rights as a Health Care Consumer ............................ 12

Taking a Wellness Perspective .......................................... 13

Getting Support ............................................................... 15

Other Practical Concerns .................................................. 16

Sources of Information and Support ................................. 17

For Further Reading ........................................................ 19

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

. f you have a life-threatening

illness, you are not alone. This

publication is written for peopleI like youpeople with seriousillnesses that have the potential to be fatal.

The following pages discuss:

common reactions to a life-threatening

diagnosis

what to consider when communicating

with medical personnel

your rights as a health care consumer

daily care alternatives

sources of support

4Facing a Life-Threatening Illness

kay. Its happened. Whatyouve been dreading hasoccurred. Youve justObeen diagnosed with a

life-threatening illness. What hap-pens next? There are many ways totravel. For example, you may need:

To cry. Thats a perfectly accept-able reaction. Of course, if you area man, or a very controlledwoman, you may need permissionto cry. You have it. Go ahead.Have a good cry. It wont solveany problems, but it will indicatethat you have accepted the factthat you are in trouble.

To receive a big hug. Whom do youknow who can hold you andassure you that you are lovable,important, and needed? It may bea spouse or a lover. It may not be.Choose carefully.

To decide on a plan of attack. Nowthat you know the situation, whatare you going to do about it?Others will help you decide, butwhat you want is important. Youhave choices.

To do some research. There arenational organizations and sup-port groups for almost everyknown disease. Find yours. Getsome information. Learn all youcan about your illness.

To do some brainstorming. Yourfamily will probably be a part ofthis. You may want to attendmeetings of a support group. Talkwith your doctor. Decide whatsright for you. You have the rightto refuse treatment if that is whatyou desire. You have the right tochange doctors.

To make a plan. Depending onwhat youve decided to do, properarrangements must be made.Many factors need to be consid-ered. Will you need to be awayfrom your home? Will you needtransportation for treatments? Doyou have small children who willneed babysitters? Are there othersdependent on you? How muchoutside help will you need?

To work on your finances. What isyour employment situation? Canyou get a sick leave? Do you havethe necessary insurance to coverhospitalization? Does your insur-ance cover care given at home? Ifyou dont have insurance, consultwith the social worker in thehospital. Do you have personalpossessions that you can sell toraise money for your care?

To join a support group. It may bedifficult for you to ask for help,but its going to be necessary. Putyour pride in your pocket. Acceptall offers of help, and learn to askfor what isnt offered. If you need

5companionship, say so. If youneed time to be alone, say so. Fora time, you are in the cat birdsseat. Take advantage of it.

To rearrange your house. If you stayat home, will you need a hospitalbed? Will you be able to travel thestairs? If not, what do you have todo so that you can live on onefloor? What special equipmentwill you need? Can you buy, rent,or borrow it? If the illness isprolonged, you may even find itnecessary to move.

To talk with your children or parents.What and how much do you tell achild? The answer depends on thechilds age. Explaining a trip tothe hospital is easy, but explainingthat your medications may bringmood swings is difficult. Talkingwith parents is a different issue. Ifyou have been diagnosed ashaving AIDS, what do you say toyour family and your sexualpartner(s)? You may want to takeyour own support group with youfor that conversation.

To talk with your clergy person orrabbi. Some persons, when given adiagnosis of a serious illness, see itas a punishment. Some see it as atest of faith. Some get very angrywith God. Its important to talkabout your feelings. The bookWhy Bad Things Happen to GoodPeople may be of interest to you.

To find a counselor. Some spousesand significant others are notable to deal with the incredibleemotion that flows after the kindof diagnosis you have just beengiven. If this is your situation andyou have the money, hire a coun-selor. If you dont have the money,call your county mental healthagency. Dont keep on pretendingyou didnt hear what the doctorsaid. Deal with the problem.Throw dishes at the wall if it willhelp.

To lower your housekeeping standards.Regardless of what treatment youchoose, you wont be feeling soenergetic as usual; relax. You areimportant. Housekeeping tasksarent.

To value yourself. If part of yourtreatment results in the loss of abody part (mastectomy, hysterec-tomy, amputation), your self-image will be at risk. You may befeeling blue because you are adrain on the family. Perhaps youwill lose your hair owing to che-motherapy treatment for cancer.Your own feelings about yourselfwill be constantly under attack.Remember, youre still the personyou were before you became ill.You are important. Dont everforget it.

6To be realistic about the future. A will,a living will, and a durable powerof attorney are all important foreveryone. A will is importantbecause, in Pennsylvania, if youdie without one, the state willdecide where your money goes.A living will lets your family andyour doctors know how you feelabout heroic care in the hospitaland at home. A durable power ofattorney lets you designate anotherperson to make health care deci-sions for you, if you become unableto do so. Its not fun to make thesedecisions, but your making themtakes a tremendous burden off theshoulders of your family and yourdoctors.

To be realistic about what others canoffer you in your search for ways to ac-cept your possible death. Particularlyin the United States, death isneither discussed nor consideredseriously. You may want to see thetime that you are ill as a giftanopportunity to settle family feuds,mend relationships, take care ofimportant details in your life. Dontbe afraid to run up your telephonebill. And dont be surprised if yourfriends and relatives dont want totalk to you about dying. Mostpeople are very uncomfortabletalking about the possibility ofdeath. You may need to go forprofessional help if your friendsare too uncomfortable to visit you.

From the beginning of time, civiliza-tions have established rituals andcustoms around birth and death. Forthe ancients, both were mysteries.Today, a great deal is known in thescientific world about each. Usually,birth is a very joyous, though painful,occasion. The appearance of a newlife is an occasion for much celebrat-ing. That is accepted.

Death also is part of the cycle. Manyhave not accepted that fact. Particu-larly in the United States, death isassigned to hospitals and bodies areassigned to funeral homes. Very fewpeople die at home. Change, how-ever, is coming. Part of that changeis due to cost, because families cantafford to keep a terminally ill patientin a hospital or nursing home. Somefamilies accept death as a naturalprocess and value the comfort ahome setting may provide.

Its important to review what youbelieve about death, and from thatreview decide how youre going toapproach it. To die peacefully is theultimate act of living.

7Reacting to the Diagnosis

ts normal to have a varietyof emotions and thoughtswhen youve been diagnosedI as seriously ill. In fact, you

may feel one way one day and com-pletely different the next. You maygo, for example, from feeling angry,to being depressed, to denying yourillness. The emotions and thoughtsdescribed below are commonlyexperienced by people with life-threatening illnesses, according toElisabeth Kbler-Ross.

Denial gives you a buffer betweenyourself and unwelcome news. No,this cant be happening is a normalreaction, as is listening without reallyhearing. These responses give youtime to regain composure and self-control. You may want to isolateyourself at first. But try to allowfriends and family members to besupportive by discussing your emo-tions with them. These people oftenhave feelings similar to yours. Bytalking openly about your illness, youcan help yourself and your friendsand relatives deal with feelings ofdenial.

Anger and resentment are apt tosurface, often when denial is nolonger possible. You may feel youvedone nothing to deserve this illness, afeeling that can compound yourhelplessness and frustration. Youmay even resent healthy, energetic

visitors, who remind you of lossesyou could face. Venting your angerwith a good listener can reduce theintensity of these feelings.

Bargaining may be tempting. Itoccurs when a person agrees to dosomething, such as change his or herbehavior, in exchange for somethingelse. For example, a seriously illperson might bargain by promisingto go to church every day if madewell enough to attend a specialfamily gathering. Bargains are usu-ally made in secret, often with God.You may find yourself wanting tobargain because youre afraid of thefuture or you are in pain.

Depression, stemming from a senseof loss, is a normal reaction. It iscommon as the treatment for a life-threatening illness progresses. Medi-cal expenses may increase, leadingyou to feel depressed because youthink youre a burden on others. Oneway to ease sad feelings is to discussthem openly with a trusted listener.

Because people have individual waysof dealing with new situations, noone can tell you how you should befeeling. An important stage in growthis to recognize what these feelingsare, accept them, and not judgethem. Feelings are not right orwrong. They just are, and they willchange.

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

. What didyou justsay?

I havewhat?

Doctor, whatdoes thatmean?

This cant behappening.

8Communicating with Medical Personnel

hen were sick, weoften go to a nurse ordoctor for reassuranceW and care. If we are

seriously ill, we especially depend onthe medical professionals who man-age our care: a primary care doctor,specialists, nutritionists, therapists,nurses, patient representatives, andsocial workers. Your ability tocommunicate with these people isone of the most important factors inmanaging your illness.

Communication does not comeeasily. It is something you and yourmedical team will have to work at.Barriers to effective communicationinclude misunderstandings aboutword meanings, expectations, anddifferent points of view.

Simple misunderstandings aboutwords are often a major barrier toeffective communication. If you dontunderstand medical terminology orself-care instructions, ask for anexplanation. Unless you ask forclarification, your medical team willassume that you understand.

What you expect from medicalprofessionals also can hinder effec-tive communication. If expectationsare not met, you may become disen-chanted. For example, doctors differ

in the amount of information theygive their patients. They try todetermine what each patient wants toknow, then provide this information.If you expected to learn more fromyour doctor than he or she is tellingyou, its up to you to expressyour concerns.

Different points of view can affectcommunication. Whats important tothem might not be important to you.For example, a doctors point of viewmay be that you need to know cer-tain information about your illness,but you might want to be told howthe disease will progress. Discussyour needs for particular informationwith the medical team.

If you have questions about manag-ing your care, make an appointmentto meet with the appropriate medicalprofessional(s). Before the meeting,write down your questions andconcerns. Be prepared to take notes,and consider taking a family memberor friend with you.

I dont knowhow to talk tomy doctor.

I never seemto get anyanswers to myquestions.

Why cantmy doctorunderstandwhatIm saying?

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

.

9Before agreeing to a recommendedtreatment plan, ask:

Has the diagnosis been establishedwithout any doubt? Would anyother tests help confirm or furtherdefine the diagnosis?

Is there evidence the treatment will:

1. prolong life?2. prolong life and limit suffering?3. just limit suffering?4. just prolong life?

Is the goal of treatment to cure orcontrol the disease? If its control,what symptoms would I have withand without treatment?

How long will the treatment(s)last, and how often will follow-upvisits be required?

What lifestyle changes must Imake regarding work, familyrelationships, and/or recreation?

If several specialists are involvedwith care, who will be coordinatingthe overall treatment plan?

What are the benefits and risks ofsuggested treatment(s)?

What are the possible side effectsof the treatment(s)? What can I doto prepare for or limit side effects?

What are the names of the drugsprescribed? What are their inter-active effects with other medica-tions?

Are there special foods I shouldeat or avoid?

If the illness will persist, how willit progress? What types of prob-lems can I expect? How well cansymptoms be controlled? Whatsteps can I take to prepare for thelater stages of the illness?

Will any special equipment needto be rented (e.g., a hospital bedfor home care)? If so, where can itbe obtained?

What can be done to alleviate anypain I may feel?

What are the costs? What willinsurance pay for? Are there othersources of assistance to helpmanage the illness?

Are there support groups? If so,how do I make contact?

10

Getting the Help and Care You Need

hile you may need tospend some time in thehospital, home healthW care and hospice pro-

grams can provide valuable assis-tance and may be needed if you canbe at home. If home care is notpossible, but you dont need hospitalcare, nursing homes offer livingarrangements with varied levels ofassistance.

Determining the best health careoption for you depends on youravailable financial resources andother supportive means, and on yourexact medical condition. Certaindaily care services are covered byinsurance policies, Medicare, andother health benefits. These servicesvary by company and medical condi-tion, so review your benefits todetermine exactly what is coveredand to what extent.

When making daily care arrange-ments, be aware that different typesof organizations can provide thiscare. Some, for example, are non-profit, meaning they perform theirservices for fees intended to coverexpenses only. Others are for-profit,meaning they are interested in mak-ing a profit from their fees. Someagencies are approved by govern-ment regulatory bodies, while others

I dont wantto stay in thehospital, but Ineed help withdaily tasks.What are myoptions?

Are homehealth careservices coveredbyinsurance?

are not. Ask for the credentials of theagencies youre considering, to makesure they meet your standards.

Home health care includes a broadrange of medical, nursing, andtherapy services. These often includeother services, such as homemakingor transportation, which can helpyou manage the problems of a life-threatening illness within the comfortand security of your own environ-ment.

The goal of home health care is tohelp people function as indepen-dently as possible. Home health careis available from various communityand private agencies. To locate thesehome care providers, check yourtelephone book for listings of humanservices in your area. Their servicesrange from complex medical treat-ments to assistance with personalcare.

Nursing homes offer three basictypes of careskilled care, interme-diate care, and custodial care. Indi-viduals in skilled care require thecontinuous services of a registerednurse. Those in intermediate careneed regular, but not continuous,nursing care along with personalcare assistance. People who needhelp only with personal care receivecustodial care. Be sure to checkcosts.

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

.

11

Hospice care is offered to seriously illindividuals and their families whenan illness is considered no longercurable and when the person has alimited life expectancy measured inmonths rather than years. Theseprograms operate under three basicprinciples:

care for the seriously ill is coordi-nated by a medical team,

the patient can spend his or herdays in less distress by a reductionor elimination of pain and symp-toms,

the family is consoled at the timeof death and during bereavement.

Hospice care can be offered in yourhome, with a hospital as a backupfacility if needed. This type of care isusually not appropriate when anillness is newly diagnosed, unless it isso far advanced when discoveredthat you do not want to receiveactive treatment.

12

Your Rights as a Health Care Consumer

In 1987 Congress passed legislationoutlining the rights of home healthcare recipients. All home healthagencies are required to share theserights in writing with their clients.Home care consumers are entitled tobe notified in writing of their rightsand obligations before any treatmentis started.

Providers of home health care areobligated to protect and promote therights of their clients. If you receivehome care, youre entitled to:

have your property treated withrespect

not be discriminated against

be informed about your care andany changes in it

participate in the planning of yourcare

know your clinical records will bekept confidential

be advised of how much Medicareand other sources can be expectedto pay for services rendered

an investigation of any complaintregarding treatment or lack ofrespect for property

For more information regardinghome health care agencies or topursue a complaint against anagency, you may call the Pennsylva-nia toll-free home health hotline at1-800-222-0989.

he rights of health careconsumers are protectedunder certain federal andT state laws. For example,

youre entitled to receive completeinformation about your illness and itsprognosis, and you may withhold thatinformation from others if you wish.Youre also entitled to know aboutany procedures or treatments thatmay be planned, to know how muchthese may cost, and to accept or refusefurther treatment.

In 1980, the Pennsylvania Depart-ment of Health designated minimumprovisions for a Patients Bill of Rightsand required all hospitals in the stateto establish their own rights for pa-tients (which include the minimumstate provisions). Hospitals are re-quired to inform individuals of theserights, either by displaying themprominently with additional copiesavailable upon request or by provid-ing them with a copy upon admission.

Nursing home residents also haveimportant rights. These include equalaccess to care, freedom to choose aphysician, confidentiality, participat-ing in decisions about ones care,refusal of care, the right to be in-formed of charges, unrestricted visita-tion, privacy, and protection of per-sonal funds. Residents also are en-titled to voice their complaints. Ifyoure considering nursing home care,ask the facility for a copy of its resi-dents rights.

If Im in ahospital, canmy medicalteam ordertreatmentswithout mypermission?

How should ahome healthcaregivertreat myproperty?

If I choose tolive in anursing home,may I receiveany visitorI want?

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

.

13

Taking a Wellness Perspective

ellness is made up ofmany parts. Now thatyou know youre aW high-risk person, its

more important than ever to assumeresponsibility for your own well-being. Its important to think aboutthe overall quality of your life:

Maintain relationships that areimportant to you.

Be safety conscious (includingexamining yourself for physicalproblems, using food safety prac-tices, taking safety precautions inthe home to prevent falls).

Continue interests that you canmanage, those that add somethingspecial to each week.

Exercise to maintain mobility andreduce stress. Find an exerciseroutine that suits you. You maybegin by walking to the cornerevery other day. Build up distanceand frequency slowly. Use thetime outdoors to enjoy naturesdiversity.

If necessary, seek help throughstress management and/or spiri-tual counseling. Management ofstress is often helped by yoga andspecial classes in deep breathing.

More than ever, the quality of yourlife is important now.

Eating a variety of foods in modera-tion is of great benefit. For assis-tance, refer to the revised USDADietary Guidelines, availablethrough the Penn State CooperativeExtension office in your county. Youare unique and may have specialdietary needs.

If youre on chemotherapy, forexample, there are some foods youmay not be able to eat. If you havekidney disease, your protein intakemay be limited. If you have diabetes,your food choices and eating patternwill need to change. If you haveheart disease, your fat intake shouldbe reduced.

A patient often feels resentmentwhen he or she is warned, You needto lose some weight. Yet beingoverweight is a risk factor for manydiseases. Its easy to take medicationsbut difficult to change a lifestyle. Itsyour choice. How badly do you wantto live? Almost every other weekbrings new evidence from nutritionalresearch on the importance of dietand health. Your doctor or dietitiancan recommend, but its up to you todecide. Make changes one step at atime. It took years to get into yourcurrent condition. It wont changeovernight. If you cant or wontchange your lifestyle, be prepared toface the consequences.

14

You may want to explore the rela-tively new field of psychoimmunetherapy. Psychologists are workingwith patients on the interractionsamong body, mind, and soul. Howwe think and what we believe canaffect our wellness. This is a new butfascinating field of medicine. Dr.Bernie Siegel, for example, has done

some interesting work with cancerpatients in this area. The role ofmeditation in healing has beenexplored by O. C. Simonton andcolleagues (see For Further Read-ing). The role of prayer in healinghas been part of many cultures forcenturies.

15

To be most helpful, the person youtalk to should be comfortable withyour illness. Finding this person orgroup may take time. Dont bediscouraged if family members andfriends shy away from illness-relatedconversations. These people arecoming to terms with the seriousnessof your illness just as you are, andwith time, they will probably be ableto talk with you.

Everyone can benefit from thesupport of a family member orfriend. For this to happen, however,you must be open to it. Allow othersto help. Let them listen while youopen up about your feelings, ques-tions, and fears. If youre tired ofdiscussing your condition, you mightwant to look through an old scrap-book. You may even want to labelloose family photos and organizethem in an album. Reminiscing canbring back good memories; andlaughter can be the best medicine,when you can laugh without feelingangry.

You may find it helpful to keep adiary or log where you can expressyour concerns and your triumphs.While a document like this cannotreplace the support of another per-son, it does give you an outlet toopen up and to vent frustrations.

oping with the unknowncan be a challenge for any-one. When the unknownC is a life-threatening illness,

coping can become extremelydifficult.

Throughout your illness, you willneed the support of your friends andfamily members. Beyond this, manycommunities have specific supportgroups made up of people who havethe same illness as you, family mem-bers of those with the same illness,surviving family members of thosewho have had the disease, andtrained counselors.

Support groups hold either open-ended sessions, where you can attendas many meetings as you find helpful,or time-limited sessions, where thesame group members agree to meettogether for a fixed number of ses-sions. The basic goal of any supportgroup is to help individuals learnmore about dealing with illness-related problems.

Some people feel uncomfortablesharing their situation in a groupsetting. For them its easier to talkone-on-one with a close familymember or friend, a member of theirmedical team, or a trained listenersuch as a clergy person, socialworker, or psychologist.

Getting Support

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

. Whom canI talk to?

Where canI go forsupport?

16

Other Practical Concerns

Why should Iorganize mypersonalaffairs?

If I decide todo so, are thereany guidelinesto follow?

t may be frightening to knowyou could become dependenton others, even temporarily.I Because of this, you might be

tempted to delay thinking about andresolving certain practical issues. Butdiscussing these issues now can giveyou a greater sense of control overyour life, and it may eliminate manyproblems later.

There are steps you can take toorganize your personal affairs. Theseinclude organizing personal records,considering an advance directive forhealth care, preparing to transferproperty, and preplanning finalarrangements. These steps are out-lined in the Penn State CooperativeExtension publication Getting YourAffairs in Order (forthcoming).

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

......

.

17

American Cancer Society90 Park AvenueNew York, NY 10017

The American Cancer Society is avoluntary organization that offers avariety of patient services, includingpublications, videos, and sponsorshipof the support programs Reach forRecovery, I Can Cope, and I CanSurmount. The ACS also is involvedin cancer education and research.ACS local units are organized tocover all counties in Pennsylvania.Limited financial services are avail-able to cancer patients. The ACShotline number in Pennsylvania is800-227-2345.

American Diabetes AssociationDiabetes Information Service Center1660 Duke StreetAlexandria, VA 22314(703) 549-1500

The American Diabetes Associationprovides classes, lectures, and self-help groups that meet throughout thecountry. To find out about DiabetesForecast and various activities in yourarea, check your telephone book orcall the National Service Center at800-ADA-DISC.

American Heart AssociationAmerican Heart Association NationalCenter7272 Greenville AvenueDallas, TX 75231(214) 373-6300

The mission of the American HeartAssociation is to reduce disability anddeath from cardiovascular diseases andstroke. Skilled volunteers in 25 officesthroughout Pennsylvania offer educa-tional and community service pro-grams at schools, work sites, and othercommunity locations. To make contactwith the office closest to you, checkyour telephone book or contact theclosest American Heart Associationdistrict office. These are located inWilkes-Barre, Williamsport, Erie,Lancaster, and Pittsburgh.

Cancer Information ServiceThe National Cancer InstituteBethesda, MD 20892(800) 422-6237

The National Cancer Institute is anagency of the National Institutes ofHealth, U.S. Department of Healthand Human Services. Its CancerInformation Service, open 7 days aweek, is staffed by trained personswho can answer your questions re-garding cancer, medical facilities,home care assistance programs, finan-cial aid, emotional counseling, andother services. They also can send yourelevant information about specifictypes of cancer.

Sources of Information and Support

18

Choice In Dying, Incorporated250 West 57th StreetNew York, NY 10107(212) 366-5540

Choice In Dying, Inc., is the nationalcouncil for the right to die. Thisnonprofit educational organizationdistributes information on advancemedical directives, provides psycho-logical and legal counseling, andmakes referrals to local organizations.

Leukemia Society of America, Inc.600 Third AvenueNew York, NY 10016(212) 573-8484

The Leukemia Society of America,Inc., offers supplemental financialassistance and consultation for cancerpatients with leukemia and relateddisorders.

Make-a-Wish Foundation of AmericaSuite 2054601 North 16th StreetPhoenix, AZ 85016

The Make-a-Wish Foundation ofAmerica works closely with familiesof terminally ill children (up to age18). It works with families to coverexpenses and to arrange for grantinga childs special wish, which willprovide encouragement, respite, andspecial memories.

19

American Diabetes Association(1987). Adults: Diabetes and You.Alexandria, VA. Diabetes Infor-mation Service Center.

Bartlett, J. G., & Finkbeiner, A. K.(1991). The Guide to Living WithHIV Infection. Baltimore: JohnsHopkins University Press.

Cousins, N. (1979). Anatomy of anIllness as Perceived by the Patient,Reflections on Healing and Regenera-tion. New York: Norton.

Hermann, J. F., Wojtkowiak, R. N.,Houts, P. S., and Kahn, S. B.(1988). Helping People Cope: A Guidefor Families Facing Cancer. Harris-burg, PA: Pennsylvania Depart-ment of Health.

Kbler-Ross, E. (1978). To Live UntilWe Say Goodbye. Englewood Cliffs,NJ: Prentice-Hall.

Kbler-Ross, E. (1982). Working ItThrough. New York: Macmillan.

Kbler-Ross, E. (1987). Aids: TheUltimate Challenge. New York:Macmillan.

Kushner, H. S. (1983). When BadThings Happen to Good People. NewYork: Avon.

Langone, J. (1988). Aids: The Facts.Boston: Little, Brown & Co.

National Cancer Institute. (1986).Taking Time: Support for People withCancer and the People Who CareAbout Them. Bethesda, MD: PublicHealth Service, U.S. Departmentof Health and Human Services.

Siegel, B. S. (1986). Love, Medicine,and Miracles. New York: Harper &Row.

Siegel, B. S. (1989). Peace, Love, andHealing. New York: Harper &Row.

Simonton, O. C., Matthews-Simonton, S., & Creighton, J.(1978). Getting Well Again. LosAngeles: Houghton Mifflin.

For Further Reading

@@@@

@@@@

@@@@

@@@@

@@@@

@@@@

@@@@

@@@@