Sick­est Amer­i­cans give ad­vice on us­ing the health care sys­tem

Belleville News-Democrat (Sunday) - - Local - BY MAR­GOT SANGER-KATZ New York Times

If the health care sys­tem seems con­fus­ing to you, you are not alone. In a large re­cent sur­vey of the most se­ri­ously ill peo­ple in Amer­ica, The New York Times learned that they, too, find it dif­fi­cult to nav­i­gate. But they have de­vel­oped a few strate­gies for get­ting through.

The sur­vey, a joint project of The New York Times, the Com­mon­wealth Fund and The Har­vard T.H. Chan School of Pub­lic Health, in­cluded land­line and cell­phone tele­phone in­ter­views with 1,495 adults who ei­ther had a se­ri­ous ill­ness or were car­ing for some­one who did. In­ter­views were con­ducted in English and Span­ish. The re­sults are na­tion­ally rep­re­sen­ta­tive. The mar­gin of er­ror is plus or mi­nus 3.2 per­cent­age points for most ques­tions.

Here are some tips and pit­falls about how to be sick from a group with lived ex­pe­ri­ence. Keep records and bring them:

Among the se­ri­ously ill peo­ple we sur­veyed with the Com­mon­wealth Fund and the Har­vard T.H. Chan School of Pub­lic Health – those who had been hos­pi­tal­ized twice and seen three or more doc­tors in re­cent years – bring­ing doc­u­ments with them to doc­tor’s ap­point­ments was com­mon. Sev- enty-eight per­cent of them car­ried a list of med­i­ca­tions. Seventy per­cent brought a list of ques­tions.

Many peo­ple in the sur­vey had seen more than five doc­tors in the last year. So bring­ing records with them made sense, to en­sure that each physi­cian knew what oth­ers were do­ing. In an ideal world, ev­ery doc­tor would have a pa­tient’s com­plete med­i­cal records. But, in many cases, med­i­cal records re­main siloed and hard to share dig­i­tally.

Some pa­tients in our sur­vey said work­ing on ques­tions in ad­vance was em­pow­er­ing. Doc­tor’s vis­its are of­ten over be­fore you know it, and it can be hard to fol­low up af­ter­ward.

Find an ad­vo­cate:

More than half the peo­ple in the sur­vey said they brought a friend or fam­ily mem­ber with them to ev­ery ap­point­ment. When you’re sick, you may not re­mem­ber ev­ery­thing that is said to you. A sec­ond set of eyes and ears can be help­ful.

Peo­ple who are very ill, said John Ben­son, a se­nior re­search sci­en­tist at Har­vard who helped de­vise the sur­vey, “need some­body who will be able to func­tion who is not ill.”

About a third of peo­ple sur­veyed said they had a friend or fam­ily mem­ber in the health in­dus­try whom they could go to for ad­vice. Those peo­ple were of­ten used as sound­ing boards for find­ing the best doc­tors, or trou­bleshoot­ing prob­lems with treat­ments. Of course, not ev­ery­one has the good for­tune to have a med­i­cal pro­fes­sional in the fam­ily.

An­other group of pa­tients – just un­der half – had a pro­fes­sional at­tached to their doc­tor’s of­fice or in­sur­ance com­pany in charge of co­or­di­nat­ing their care. Ac­cord­ing to the re­sults, such peo­ple had an eas­ier time nav­i­gat­ing the sys­tem than those who did not. Ask ques­tions, and lis­ten:

The sur­vey asked peo­ple whether they’d de­vel­oped any spe­cial tricks or work­arounds in nav­i­gat­ing the sys­tem.

The most com­mon an­swers fell into two cat­e­gories. One group said it was im­por­tant to fol­low doc­tors’ ad­vice. The other said it was im­por­tant to do out­side re­search, ask ques­tions and get sec­ond opin­ions.

That split re­flects just how hard it can be to nav­i­gate the health care sys­tem when you’re sick. The peo­ple in our sur­vey tended to have very se­ri­ous health prob­lems, some­times sev­eral at once. They counted on the sys­tem to help them, but also rec­og­nized that it of­ten let them down.

When the sys­tem fails: We might think of the se­ri­ously ill as the most ex­pe­ri­enced users of our health care sys­tem. They are. But they are also sick. De­spite the above ad­vice, pa­tients in the sur­vey de­scribed the health care sys­tem as per­plex­ing and over­whelm­ing. Sixty-two per­cent said they’d been ren­dered “anx­ious, con­fused or help­less” by the ex­pe­ri­ence.

When asked about spe­cific types of mis­un­der­stand­ing, 18 per­cent said ad­vice by dif­fer­ent med­i­cal pro­fes­sion­als con­flicted, and 15 per­cent said they couldn’t un­der­stand what was be­ing done to them.

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