Insurability and employability

334

JA('r' vul . Ix . s,,. C August loll all-d2

MA IINI Y I I AI . INSI :RAll11 .11'Y AND I sill lll'Anll ITY

this engenders is dealt with in a number of ways . butte adaptive and maladaptive . There may be unconscious denial of the seriousness of the illness . a defense especially common in adolescents and accounting for much of their medical noncompliance . Rather than accept the illness and experience the auendaot anxiety . they minimize its importance and behave as though they were healthy, not taking their nedirdtons . cxcrctsmg beyond their cup,oiy and missing medical appointments . There frequently is a strong element of rebellion inherent in these actions . with the ill adolescent patient viewing the medical regimen as yet anotherexample of intrusive parental control . Conversely . some teenagers and young adults passively follow the directions of parents and physicians, relinquish control and resist moving toward independence and the adult role . Other risk-taking behavior involves smoking. consumption of alcohol, drug abuse and irresponsible sexual activity . The frequency of alcohol and drug abuse in patients with congenital heart disease is nut known . but early caution serves the purpose of later prevention . Education regarding the special risks of such abuse should begin very early . Sexual and marital concerns. Clinical experience suggests that most adults with congenital heart disease have normal sexual and marital relations. Still • certain issues may arise . Because of low self-esteem, patients may feel the need to limit their romantic aspirations and pursue only -'safe" prospects . Passive dependent patients may seek unequal relations with individuals who wish to assume a "caretaker" role . There may he hesitation in disclosing the illness because of fear of rejection . Sexual issues may arise . Adolescents with congenital heart disease are significantly more concerned about sexuality than arc other ill adolescents . with fears of death during intercourse particularly prominent among teenage boys 161. Marriage raises additional concerns . Men especially may he uncertain about their ability as financial providers . In women . pregnancy and childbirth are significant concerns

Insurability

and

and fear regarding genetic transmission is coalition in both men and women . Both patient and spouse may he apprehensive about the possihility of a shortened life span with subsequent "abandonment" of the family . Martial cooesel. trip is open helpful in dealing with these common problems before they become disruptive . The workplace. Adults with congenital heart disease also face special challenges in the workplace (sec Insurability and Employability by Drs . Mahoney and Skorton elsewhere in this conference) . Briefly patients with congenital heart disease arc at a disadvantage in the job market . not only because of current physical limitations . but also because of their experiences . If sheltered and overprotected as a child . they must subsequently cope with the effects of experiential and cultural deprivation . Job discrimination is common and many feel compelled to conceal their medical history from potential employers . Occupational choice is also somewhat restricted. Despite these difficulties, many adults with congenital hear disease perform extremely well in demanding professions . These patients often report that they were encouraged during childhood to strive to reach their limits and to view their illness as a surmountable obstacle . rather than as a limiting handicap .

References I . Lode 1 5t . Piehi :aric aspect, of congenital head disease. Psychiatr Clin North Am 1%2:5 39Y-40k J . Nolan'T .1`1-113 . Emotional correlate, and consequence,

of birth

defects .

I Pedlar I4at.lira_'nl-Ib. 3. Oaord DR . Cross LA. And,,,,

tumult of anngcitael

os 191' .11 M-1.

3.

La.INne

J.

EJ.

Aposte

JF.

Percei,ed alhf actual

heart disease and effect on femily life . Psychusuniab

Roan .'.t . P. . .InAooaal adimimcm of sibhnµs of children s,llh

chronic illness . 1'cdintric, 1979m3 :hth--t7 . 5. Pie„ 111. Roghman J. I S once illness and its consequence . J Pedtatr 197L79.351-4. bk hf,er L. Kellermsa J . Fllenhseo L. ash 1 . Rider D. P,reh.,htaic erect, or aloes, in admeunm,-ends) isue and copier ,tiles .

I p,don,

l"0147 11:-N .

Employability

LARRY T . MAHONEY, MD. FACC . DAVID J . SKORTON, MD, FACC

Life insurance can he obtained for a large proportion of patients with congenital heart disease . particularly after early adolescence . Unfortunately, funding of health care for adults with congenital heart disease remains a major problem. Changes in methods of reimbursement in the health insurance industry have been developed in an attempt to

contain the cost of new technologies . while making the technologies appropriately available . How patients should he funded to meet the costs was among the major concerns voiced in the Bethesda Conference. If funding for the care of adults with congenital heart disease were less problematic . more cardiologists might he attracted to this field .



JAC( Vol 16 . No '_

MAHONEY El AL . INNCRAIIILIt , AND LMPIAYAtII .ITY

Au4ml 1441 1I I-4'

Table 1 . Di,trihution of In,uruhilily of Surgically Repaired Congenital Heart Defeat Inwrabile, Rate • Ix,

Standard

Awna ,ten _polar

Tonic denote . whcahular Atomic ,terali, prnaLuler O ral sor t el d e tect Al-I cl .l dchrcl .,tna, dy,lunclion eiarclaunnntcart o

nede

111111 I 'I I III .911,", II. I

oo,t

.1,u

`9 ,69' y", - , u 1 1 04' 10'Ii) 11011

1,114,

'r1 . :

hypenen,lan (oar-u-oteon . nnh

fllll

14,111

return Teleology of Fallol Trun sanenuw, VSD.on,hon

-

Lmmwahle 11 lilt l :Qlq CUSI 4191 '1 114, 41 no

'91h~1 hype"-on d-lranepn,1 Inn of ,a LCD, no,smplnm, :1 -i 1711 4111 ECD, mild moral regargltanun 111)41 I-TGA 5161 T 11, It] 401 'lln, I-TeiAxhharrMthmla, II In : II Is, wnralln,umcl,nct 1) 0, 24(11 20 W1 Patent dodo, aaeoe,u, 41 191, Pulmonary ,ten,:,l, It Is61 1'- I7n, 1, 1 14, t,,mlannmalne, pllmonary I ct Iss1 I .411 1

111241

VSD.,nallson, VSD.In a,edpulmo

-

u I1III

O la, 611x1

4I Is1 24 'Ii 411, 9121(1 16 Is',

levstanu 'Resell, ere espre„ed a, the number of Imuranu comp-m, reponmg . with the percents of lolul responder, in paremhe,o, . ECD - endoceNml uehion defect : Inc = e,ed : Std = ,1,odo d . 11,6 - teampo,mun of the great arteries : Inln,= nc on--hit : SSD - ,u W uplal defer Modified from Tree,dell . n 1,1 .

it

Life Insurance A recent survey of life insurance companies indicated that insurance at standard or mildly increased rates was available primarily to children with minor defects but hecame available to a much larger group after the age of 15 to IS years (11 . Thus . even if life insurance gas been denied to a child with congenital heart disease, reapplication as a young adult is strongly recommended . Table I It,[, the attitude, of ht,m.mcc cvlap,m medical directors considering applications for whole life insurance from individuals with congenital heart defects . Many companies have indicated that they might nut consider a child insurable . but a -young adult" lusually defined a, > i5 )cars of age) might receive a more favorable evaluation . This position seems to reflect the feeling that by adolescence. more will he known ahnn prognaoi,Group

101111

life 4 : lance provides a dealt] benefit ILl

applicants from mrmher, of a specific group . Usually . the larger the group sire . the lower the cost of insurance . Less medical information is required tar term life applications and the probability for denial i, ignifcanwly less than for many other life insurance instruments . Term insurance is a rela-

335

liven inexpensive solution for young parents who desire death benefits only and is available to most young adults with congenital heart disease who purchase through a large group . It is n ot . however. an investment source, nor does it continue in effect after the association with a group or the payment of premiums ceases . After a patient applies to a life insurance company . the response, mire the application form are compared with lnfnr motion in the Medical Information Bureau . Inc . . a group that pools medical information Irotn life insurance epplicatiuns, f f denial of insurance is based solely on information from this bureau . patients should request that the information be sent to their personal physician . After review, if the information is believed it) be in error, the insurance agent should be nettled and an appeal initiated . If denial is based on information provided on the application form or received from the patient's physician- the patient should discuss the problem with that physician . A carefully worded letter from the physician to the company's medical director frequently suffices . A patient can apply to other major insmrance companies that offer contact with reinsurance companies to handle policies and plans that cannot be insured . If these recourses arc unsuccessful. the patient should seek the advice of an independent insurance agent who has access to many companies' descriptions of levels of insurability and can advise the patient to apply to companies in which insurability appears more likely . Uninsured patients should be encouraged to consider alternative investment strategies to provide for surviving family members . Health Insurance During the past 20 years . fee for service insurance has become !increasingly expensive and a number of reimbursement schemes and health care plans have been developed to redo,: the cost of medical care Amhulamry treatment facilities counter the cost of hospitalizatiun . Health Maintenance Oiganieahons (HMOs) and Independent Practice Associations IIPAsI have been devised to share financial risk with patients and physicians . In rile last III years. the number of HMOs has quadrupled . IPA% now account fur :507r of HMOs and most new HMOs and IPA, . However. most health insuance is still provided on a fee for service basis . Young adults with congenital heart disease confront the reality that many fee for service plans do not reimburse for conditions that existed before purchase of the insurance . a gnuliftcatiun that can cause significant financial difficulty if surgery or diagnostic inpatient procedures arc required . If insurance was secured before the diagnosis of congenital heart disease was made, young adult patients are covered by the present policy . but any change of policy may result in forfeiture of the covcrage . Enrollees in an HMO pay fixed monthly premiums . which may be higher than the annual costs for fee for service plans. When HMOs are associated with large employers . plans are offered to all employees without a waiting period and with-



336

MAHUNrY rT At 155L t,tiiit 115' AND FMPfn (AIILITV

out a ' preexisting condition" clause . From The patient's point of view, the HMO policy offers some advantages, Because there is a greater emphasis on preventive care, outpatient clinic visits arc covered . However, medical care must he obtained largely if not entirely from physicians within the ICd(f . so it is important fur patients to acquaint themselves with the quality of care provided by the cardioh ugisis. surgeons and hospitals within the group .

2

Several studies (2-6) have evaluated the cost-effective .

ness o€ HMOs and IPA% . The overall cost of medical care to the patien! is slightly lower with HMO plans, although the monthly rates might be higher than outlays for fee for service plans. As far as it is possible to compare clinical outcome, there appears to he no difference between fee for service and an LIMO or IPA for the general population . Despite the innovations in health care cuveraye represented by the advent of HMOs and analogous systems, health insurance coverage for adult patients with congenital heart disease remains a major problem . Patients may have adequate coverage while enrolled tinder their parents' policies. but later find it difficult to obtain their own coverage . An informal survey of 116 of our most recent patients X20 years of age revealed that 74 (6454 ; were covered under a health insurance program (commercial insurance-374, Blue Cross/Blue Shield-27%) and 3012641 received federal . Medicaid-(8921 Or county state 1301 assis(Medicare-5% tadce The remaining 12 patients 1100) were unable to secu'.it am hcencial assistance and are classified as "self pay " These data represunt our largely rural referral base amp, may not be representative of urban settings . We irish to emphasize the need for increased national attention to the problem of health care funding for these patients who generally have excellent job productivity and educational attainments. Because the size and life expectancy of this patient group promise to increase each year . the problem of insufficient coverage for health care will increase as welt . Innovations such as statewide insurance pools . employer-based health care systems and a form of national health insurance should be punned so that these deserving and productive members of the community can obtain adequate medical care_

Employability

Gvcn a mild disability from congenant heart dtscase may exert a disptoportiottatcly adverse effect on employability (7). Opportunities for employment are influenced by the type of cardiac lesion . cardiac surgery and job discrimination as well as by education and legislation enacted to protect the rights of patients and provide assist,mcc in seeking employ ment . Congenital heart disease does nut necessarily exert an adverse effect on educational capabilities . hot almost 50% of patients reported a negative impact on school progress I8) . Employers are reluctant to hire patients with a thorcotomy scar, a pacemaker or other preexisting cardiac disorders,

JsCC voi IF . No . 2 Auuu,i 1971 :311-42

even with clearance from the patient's eadiologise. A company that is self-insured for health contirnsalion is more likely to hire an applicant with a physical defect (9) . Patients often remain unhappily in a givenjoh because of the fear that other employers will not hire them or IX'caube they may lose existing health benefits . Of permanently employed pati^,nts, MIA did not tell their employer; about their heart disease

when hired and 250, did not pursue a preferred occupation because they felt roitriclcd by their heart condition Ill . Unskilled laborers are especially likely to have limited job opportunities. The rate of employment rejection for patients with even a mild disability is greacer :f,an for applicants with no disability II0). The National Rehabtlitnlinn Act of 1973 was designed to prevent job discrimina ion against the handicapped by almost all employers with all) employee'-., The "second injury' section of the Worl mans Compensation legislation was designed to assure protection of employees and employers from unusual loss reselling from a cardiac handicap separate from the protection otlered by the employer . Vocational rehabilitation services provide patients with an assessment of their capabilities and with the opportunity to develop skills needed in the marketplace, but these services are significantly underutilized and underfunded . especially by young cardiac patients . Counselors may find it difficult to channel patients toward training. opportunities. Patients may struggle because of limited educational opportunities during childhood or may accept undesirable jobs because of fear of being unable to find employment more commensurate with skills. Physicians should become advocates in seeking gainful employment for these patients .

References

Sknnrtt IM 1 xner MM- tin Insurance for etaldren sits card),ea,uuL' disne'a- Pedlards 19%.77,mel_91 .

L Tmcadl 5C .

'_- I .01 11S . H-h 151-1- .. .

D---

f

MI.,

Yor, - wiley, 1981 . Inyinhart JR . Hht^. F,, profit z,d not-Wr-pmhtton the move N Fngl I Med t9H :310' 1 11 ;A 4 . Valdee RB . Peaks RH . P,-, Wis . ci al, C-eeaences r- t sharing for children s :ma1Fh . Pedc,'ic, 1981 74,9s?_fil ? . Bi wk RH . V am J te Jr . Ruyers -H . in il . Lice, Pee ecru improve awls' health'! nc u11, Irum a random-.ced umtmlkd real . N Fngl J Med 1903 :3!19 :1 :6-3t. 6 . 57nanti If, The Fneet of P,tpaid ti',, naalth 1n,nraner an Prdlatne .,. ;c Ni-

3.

NY. I`58 5tannirg 11 . Insu

rshlhty and eerptosabili

me cardiac

,IpIh, t s .in .

ed Pediahi, Calcio~ula ancu l aI r owof ca Philadelphia : FA test( 8 DoucelSB .The,cuneedulispeseep!iorsanteeBedohangenitalhean Jocose nn Sts In