JGIM

EDITORIALS

Do Patients Want to Be Informed? Do They Want to Decide?

I t used to be tha t the medical interview was pr imar i ly for the doctor, who ob ta ined in fo rma t ion from the

pat ient . The doctor closed the interview wi th a talk tha t t r ansmi t t ed in fo rmat ion as diagnosis , prescr ip t ion, a nd

reassurance. This pa t t e rn has been d o c u m e n t e d by pa-

t ients in pub l ica t ions descr ib ing their i l lnesses, by in- vestigators in surveys of pa t ien ts , and by other inves- tigators who used par t ic ipant -observers or audio a nd

video recordings. D u r i n g these interviews, there was lit- tle oppor tun i ty for pa t i en t s to choose a m o n g t r e a t me n t

options, because doctors already had decided on the t rea tment the pa t i en t was to receive.L2 Today, in con- trast, the interview seems to be more a n d more abou t

two-way c o m m u n i c a t i o n be tween pa t i en t a n d doctor. In this issue of the Journal , Robert Nease a nd W.

Blair Brooks show us tha t we still haven ' t got ten it qui te

right, a Al though a t t en t i on has shif ted from its earlier

focus on the doctor, in too m a n y cases the doctor still does not provide the c o m m u n i c a t i o n tha t pa t i en t s want .

Pat ients wan t ne i the r to make decis ions in isolat ion nor to be told what to do. They wan t more in fo rmat ion a n d less shared decis ion making , b u t s ince the i r wan t s vary,

doctors m u s t f ind out wha t each pa t i en t wants .

Individual iz ing care is a n old t radi t ion , so why th is new interest when c o m m u n i c a t i n g with p a t i e n t s ? First , many more technologies, tests, and images are available to make diagnoses and assess risks. Also, m a n y more

therapies and technical i n t e rven t ions promise preven-

tion and improved funct ion . Obviously, more opt ions present pa t ien ts (and doctors) wi th more choices.

Second, the polit ics of hea l th care has shif ted de- cisions from doctor to pa t ient , or from doctor to doctor- and-pat ient . Choices are to be negotiated. No longer are they manda ted by the doctor alone (but they are no t yet

treated as a cus tomer request) . The new style of com- m u n i c a t i o n helps p a t i e n t s m a k e m a n a g e m e n t deci- sions. It helps doctors provide pa t i en t -cen te red care. It even may help th i rd-par ty payers, if the pa t i en t chooses

to do less after ge t t ing more in format ion , and t h u s costs go down.

Third, Nease a n d Brooks ' paper, wi th its emphas i s on indiv idual iz ing care, r epresen ts a welcome change in the type of l i tera ture abou t pa t i en t decis ion making . In the 1960s l ega l -e th ica l essays argued for e n h a n c e d pa-

t ient a u t o n o m y in heal th care decis ions to offset the historical res t r ic t ion of i n fo rma t ion t h rough pa terna l -

ism. One result was the i n t r o d u c t i o n of m a n d a t o r y re- qu i r emen t s for informed consent , a movemen t dr iven by physic ians , pa t ien ts , e thicis ts , lawyers, a n d regula- tors. As a consequence , pa t i en t a u t o n o m y grew. Mean-

while, the medical decis ion m a k i n g l i terature, wi th its

prescriptive focus, exploded to overwhelm us wi th de-

cision trees a nd guidel ines. To their credit, these de- velopments s t andard ized d iagnos is a nd t r e a t men t a n d gave the doctor a framework for d i s cus s ing decisions. This prescriptive movement , however, failed to recognize

patients" wan ts a nd their character is t ics , such as gen- der, race, a nd social class, or the doctors" in te res t s and needs. What came next is character ized in par t by pub- l ications such as Medical Choices, Medical Chances , 4

which emphas ized the u n c e r t a i n t y in decis ion m a k i n g a nd e x a m i n e d how m u c h a u t o n o m y p a t i e n t s real ly

wanted. 5.6 Another type of pub l i ca t ion d u r i n g th is period

linked t r ea tmen t with outcomes, as measu red by the pat ient ' s qual i ty of life a nd func t iona l s ta tus , which pa- t ients wan t to in tegra te wi th their own preferences and

values. What form should our pa t i en t d i s c us s i ons take?

Nease and Brooks report only tha t the a m o u n t of infor- mat ion a nd the level of pa r t i c ipa t ion wan ted by pa t i en t s

vary by diagnosis a n d disease severity. Which commu- n ica t ion style will help which pa t i en t par t ic ipa te in treat- ment choices? 7 How do we elicit h i d d e n needs? Are we

empowering pa t i en t s or p e r s u a d i n g t h e m ? Do we have the t ime to inform t h e m ? s Do we have the abil i ty to

inform them across cul tura l ba r r i e r s ? If pa t i en t s find it

difficult to get i n fo rma t ion from us, can we s u b s t i t u t e interactive video disks or the I n t e r n e t ? Finally, can these discussions survive new economic pressures? These new economic pressures are i l lus t ra ted by the following ex-

change: The pa t ient : " Tha nks for the explanat ion , I've decided to have the procedure. "' The spouse: "How long will the hospi tal s tay be?" The doctor: "I'll ask your in-

surance carrier." Until we resolve these issues, we have to accept the

advice of Nease a nd Brooks. C o m m u n i c a t e more infor-

mat ion to pa t i en t s a n d engage t hem more in m a k i n g t rea tment dec i s ions . - - JoHN D. STOECKL~, MD, Primary

Care Program. M a s s a c h u s e t t s General Hospital, Bos-

ton, MA 02114

643

644 E d i t o r i a l s JGIM

REFERENCES

1. Ley P, Spelman MS. Communicat ing with the patient. London: Sta- ples Press, 1967.

2. Waitzkin H, Stoeckle JD. The communicat ion of information about

illness. Adv Psychosom Med. 1972;81:180-215.

3. Nease RF Jr, Brooks WB. Patient desire for information and decision

making in health care decisions: the Autonomy Preference Index and

the Health Opinion Survey. J Gen Intern Med. 1995:10:593-600.

4. Bursztajn H, Feinbloom RI, Hamm RM, Brodsky A. Medical Choices.

Medical Chances: How Patients, Families, and Physicians Can Cope

with Uncertainty. New York: Routledge, 1990.

5. Strull WM, Lo B, Charles G. Do patients want to participate in medical

decision making? JAMA. 1984;253:2990-4. 6. Ende J, Kazis L, Ash A, Moskowitz MA. Measuring patients ' desire

for autonomy. Decision making and information-seeking preferences

among medical patients. J Gen Intern Med. 1989:4:23-30.

7. Evidence-based Medicine Working Group. Evidence-based medicine,

a new approach to t e a c h i n g the p rac t i ce of medic ine . JAMA.

1992:268:2420-5. 8. Clinical crossroads, conferences with patients and doctor at Boston's

Beth Israel Hospital. JAMA. 1995;274:69-74.

e

REFLECTIONS

The Last Patient on Earth

The l a s t p a t i e n t on E a r t h ,

i t s e e m s , t en a f te r five,

w a l k s in. T h r o a t a l i t t le red,

b u t no t too bad . L y m p h n o d e s

h e r e a n d there , b u t n o t h i n g

to t a lk or do abou t .

T h e n s lowly s h e r e c o u n t s

h e r l o n g s a d ta le a s if

to a f r i end on a p a r k b e n c h :

t he p a i n a t t he s m a l l of h e r b a c k

w h e r e a h a n d once res ted , w h i l e

w a l t z i n g on a p o r c h to no m u s i c ,

t he s h a r e d i n c o n t i n e n c e of t he l ad i e s '

c lub, h e r s o n ' s d e t e r m i n a t i o n

to m a k e h e r a n inva l id ,

p r o m p t i n g t h i s r e l u c t a n t v i s i t ,

t h e m y t h of h i s fa i led m a r r i a g e ,

h e r h u s b a n d ' s h e a r t a n d h e r n i a ,

y e a r s of c o u r t s h i p a n d c o n s e q u e n c e ,

of s h a r e d fo rbea rance . S h e r e t u r n s

w i t h a f o a m i n g c u p of u r i n e he ld

l ike a g l a s s of v i n t a g e c h a m p a g n e

w o n by the h o n o r e d su rv ivor ,

w i t h a p r e s e n c e so per fec t ly h u m a n ,

I l i s t e n a s if s h e were

t h e l a s t p a t i e n t on E a r t h .

PHILLIP J . COZZL MD

E l m h u r s t , I l l ino is