What Do Patients and Families Want?

What Patients and Fam­i­lies Want in Health­care

We spoke with hun­dreds of patients and fam­i­lies around the world, sought the views of renowned experts, and stud­ied thou­sands of pages of patient safe­ty lit­er­a­ture in the field to answer one pow­er­ful ques­tion:  What do patient and fam­i­lies want when it comes to health­care, espe­cial­ly dur­ing a hos­pi­tal stay?  Here’s what we learned.  

The num­ber one pri­or­i­ty for patients and fam­i­lies:  patient safe­ty comes first, last and always Every­thing a health­care insti­tu­tion does needs to be exam­ined through the lens of one fun­da­men­tal ques­tion, “What will this do to keep our patient safe and make the expe­ri­ence of their fam­i­ly bet­ter?” No short­cuts around patient safe­ty can be tol­er­at­ed.   Every provider of care knows what needs to be done to keep patients safe, to reduce harm and to improve the expe­ri­ence of fam­i­lies in the process. No excus­es are accept­able when they fail in this duty. The key test for every health­care pro­fes­sion­al: How would you treat your loved one in a sim­i­lar sit­u­a­tion?

Sec­ond, patients and fam­i­lies expect that providers and health­care pro­fes­sion­als will know their jobs and meet their respon­si­bil­i­ties to the fullest. That means fol­low­ing evidence‐based best prac­tices, think­ing before act­ing and mak­ing sure that the basics, like hand hygiene, are per­formed dili­gent­ly each and every time.  These are not just stan­dards of prac­tice; they are a sacred trust.

Third, patients and fam­i­lies want integri­ty, open­ness, trans­paren­cy and account­abil­i­ty in all phas­es of care. With­out these attrib­ut­es, they can­not make informed deci­sions about their choice of health­care providers or whether they are get­ting the straight goods from the pro­fes­sion­als and insti­tu­tions that deliv­er their care. This means, for instance, plac­ing all rel­e­vant infor­ma­tion in respect of safe­ty per­for­mance, how patient com­plaints are made and dealt with and key poli­cies involv­ing patient and fam­i­ly cen­tered care on the provider’s web­site in an easy‐to‐access loca­tion and in plain lan­guage. It also means ensur­ing that patients know they have a right to see their med­ical records in a time­ly man­ner.

Fourth, patients and fam­i­lies deserve respect. This means treat­ing the patient as a dis­tinct indi­vid­ual, not a dis­ease, con­di­tion or age.  As part of the provider’s demon­stra­tion of respect, patients want to be con­sult­ed in their treat­ment plan and have their con­cerns lis­tened to with the great­est of atten­tion. They are, after all, experts on their lives, their val­ues and their own bod­ies.  Patients and fam­i­lies are fre­quent­ly the first to notice changes in con­di­tion or signs of dete­ri­o­ra­tion, and in many cas­es, faster than health­care pro­fes­sion­als.  Wise health­care pro­fes­sion­als use this resource to the fullest.

When med­ica­tion or tests are required, patients and fam­i­lies want a full and frank dis­cus­sion about the spe­cif­ic risks and ben­e­fits. When con­sent is required, such as with med­ica­tion or pro­ce­dures, that con­sent should be prop­er­ly obtained and ful­ly informed.  But respect is also shown in sim­pler things, like health­care pro­fes­sion­als knock­ing before enter­ing the patient’s room,  intro­duc­ing them­selves by name and occu­pa­tion, and explain­ing the pur­pose of their vis­it. Respect for patient pri­va­cy and dig­ni­ty, includ­ing the use of full‐coverage hos­pi­tal gowns and pri­va­cy screens, is a strong­ly voiced need on the part of patients and fam­i­lies. 

Fifth, fam­i­lies want to be treat­ed as a vital part of the care team, not an after­thought or an incon­ve­nience. Research shows that fam­i­ly involve­ment with the patient can make a big dif­fer­ence in the qual­i­ty of care and in the speed of recov­ery. Fam­i­lies need to feel that they can ask ques­tions and that their con­cerns will be ful­ly and pro­fes­sion­al­ly addressed, not writ­ten up in the med­ical record in a deroga­to­ry note, as so many lat­er dis­cov­er.  But fam­i­lies often need more sup­port from providers and health­care pro­fes­sion­als than they receive to fill the role they need and want to play.  This requires more robust recog­ni­tion of the stress and exhaus­tion that quick­ly envelops them and which can soon com­pro­mise their safe­ty, their health, their jobs and their finan­cial well‐being. Time and again, we are remind­ed by fam­i­lies them­selves of the extent to which even the high cost of hos­pi­tal park­ing can be a bur­den and an obsta­cle to their efforts to offer bed­side care and sup­port for a loved one.

Key to effec­tive fam­i­ly involve­ment are such things as open “vis­it­ing” hours, pro­vid­ing for overnight stays in cer­tain crit­i­cal sit­u­a­tions, and ori­en­ta­tions for patient and fam­i­ly mem­bers at admis­sion to give them the kind of infor­ma­tion they need to stay safe and know what to do in cri­sis sit­u­a­tions. 

Six, patients and fam­i­lies don’t expect per­fec­tion, but they do expect that when health­care pro­fes­sion­als and providers fall short, and harm or the pos­si­bil­i­ty of harm has occurred, it will be prompt­ly and ful­ly dis­closed.  Most patients and fam­i­lies rea­son­ably sub­scribe to the view so ably set out by Sir Liam Don­ald­son, M.D., when he said:  “To err is human; to cov­er up is unfor­giv­able and to fail to learn is inex­cus­able.”  They want answers as to what hap­pened and why.  If harm has occurred, they expect an apol­o­gy from those involved in the inci­dent and oth­er forms of reim­burse­ment (like park­ing costs that arise from an extend­ed hos­pi­tal stay fol­low­ing an adverse event.)  Providers also need to be aware that when harm occurs, they have a duty to treat the emo­tion­al impact of it on patients and fam­i­lies as well as the med­ical event itself. Indeed, many patients and fam­i­lies report that cop­ing with the emo­tion­al harm that can lead up to and fol­low med­ical errors and break­downs in care — the sense  of aban­do­ment, betray­al, lack of account­abil­i­ty and absence of respect —  was as dif­fi­cult to deal with as the med­ical event itself, and that the impact often last­ed longer. 

Sev­en, when things start to go wrong, patients and fam­i­lies want access to a time­ly and eas­i­ly under­stand­able com­plaint process.  Too many health­care providers bury their com­plaint process some­where on their web­site that makes detec­tion by stressed out patients and fam­i­lies need­less­ly dif­fi­cult.  They also need access to appro­pri­ate resources any­time when harm or the fear of cri­sis can arise, and that means out­side the typ­i­cal hours of Mon­day to Fri­day from 9‐to‐5. And they expect the process will be more than win­dow dress­ing or just anoth­er effort to pla­cate patients and fam­i­lies. Research shows that com­plaints often pre­cede adverse events. They need to be viewed as major win­dows into the con­di­tion that present unique oppor­tu­ni­ties to fore­stall harm. 

Eight, patients and fam­i­lies know that heal­ing occurs not just from drugs or pro­ce­dures but also from virtues like com­pas­sion and kind­ness. We have set these out in what we have called The Lor­raine Fin­lay Heal­ing  Health­care VirtuesSM. They are the val­ues that patients and fam­i­lies con­sis­tent­ly tell us mat­ter most to them, and which they see as piv­otal to the deliv­ery of safe and com­pas­sion­ate care. They expect these val­ues to be embed­ded in every part of the health­care sys­tem and, espe­cial­ly, in its hos­pi­tal set­tings.

These are the thoughts and ideas that inform and guide The Cen­ter for Patient Pro­tec­tion, plac­ing the focus on the safe­ty and well‐being of patients and their fam­i­lies above all.

Unlock­ing the Code for Safer Care

What do patients and fam­i­lies want — and need — when it comes to health­care, and espe­cial­ly dur­ing a hos­pi­tal stay?  In our view, gain­ing a more com­plete under­stand­ing of the needs of both the patient and the fam­i­ly is the mod­ern equiv­a­lent of the Roset­ta Stone for health­care providersIt can help to deci­pher and iden­ti­fy a host of mea­sures that are indis­pens­able to both the safe­ty of patients and the well‐being of fam­i­lies and are essen­tial for hos­pi­tals seek­ing to deliv­er the best care in the most cost‐effective man­ner. 


What do you think patients and fam­i­lies want?  If you are a health­care pro­fes­sion­al or patient or fam­i­ly mem­ber, we’d like to hear from you.  Let us know here.


What Patient and Fam­i­lies Can Teach Hos­pi­tals about Avoid­ing Harm 

(Pub­lished in The Huff­in­g­ton Post)