Hospital Medicine: Understanding and Drawing onthe Patient’s Perspective

Tom Delbanco, MD

Poor communication and distance may result whenthe perspectives of clinicians and patients differ. In-dividual interviews, focus groups, and surveys ofpatients can inform health professionals about pa-tient expectations and experiences with care. Hospi-tal medicine will advance by learning from patientsand their families and involving them in efforts tomonitor and improve care. Am J Med. 2001;111(9B):2S–4S. © 2001 by Excerpta Medica, Inc.

Medicine is among the last of the service indus-tries to turn routinely to those it serves andlearn from their experiences.1 Indeed, for far

too long we have demonstrated collective arrogance innot asking our patients systematically what matters tothem, what they hope for, and what they have experi-enced. As hospital medicine evolves and grows, it is crit-ically important for the field to work carefully with pa-tients in its design and evaluation.

As a first step, clinicians should not assume they un-derstand their patients’ priorities. Laine et al2 demon-strated this point in a study of 800 patients managed by 80general internists in office practice. The investigatorsasked the physicians to think like patients and then hadboth groups respond to a series of questions designed torank the importance of different elements of office prac-tice.

Whereas both groups agreed on the primary impor-tance of clinical competence, thoroughness, and mutualtrust, physicians and patients differed strikingly in manyof their priorities. For example, physicians thought it ter-ribly important to respect patients’ privacy, but patientsput this issue lower on their priority list. Physicians wor-ried about embarrassing patients and wanted their sup-port staff to be polite; patients were far less concernedabout this aspect of practice.

On the other hand, patients thought it critical that phy-sicians explain the impact and potential dangers of pre-scribed medications, whereas physicians had this low ontheir list. Patients ranked explanations about diagnoseshighly; physicians did not. In contrast to their physicians,patients thought it extremely important to learn aboutthe risks and benefits of different treatments they wereoffered. Patients strongly wanted physicians to answerquestions; doctors put that in the middle of their list.

To move beyond such dissonance, and to see throughthe patients’ eyes, hospitalists should seek counsel fromindividual patients, small groups of patients, and largenumbers of patients.

INDIVIDUAL PATIENTS

Individual patients can offer important insights. Severalcolleagues and I are privileged to produce Clinical Cross-roads, a case-based series published monthly in theJournal of the American Medical Association.3 Focusing oncommon medical dilemmas patients face with their phy-sicians, we present a videotaped interview at a live con-

From the Division of General Medicine and Primary Care, Beth IsraelDeaconess Medical Center, Harvard Medical School, Boston, Massa-chusetts, USA.

This work was supported in part by the Robert Wood Johnson Foun-dation and the Commonwealth Fund.

Requests for reprints should be addressed to Tom Delbanco, MD,Division of General Medicine and Primary Care, Beth Israel DeaconessMedical Center, 330 Brookline Avenue, Boston, Massachusetts 02215.

2S © 2001 by Excerpta Medica, Inc. 0002-9343/01/$20.00All rights reserved. PII S0002-9343(01)00961-5

ference that is recorded, transcribed, and published, in-cluding commentary from patients and clinicians in theaudience. Invariably, we find that our patients educateand captivate an audience of clinicians.

While clinicians are taught from the first day of medi-cal school to avoid anecdotes, the insights patients offerindividually can prove invaluable as we design new sys-tems and strategies. Whether we call their lessons the“teachable moment,” or a “sentinel event,” gatheringsuggestions and complaints in an organized way canprove far more fruitful than the innumerable meetingsbetween clinicians and administrators that so often char-acterize the principal way we plan.

GROUPS OF PATIENTSFocus groups of patients are similarly powerful. Profes-sional leaders, rather than clinicians, should lead them toavoid biasing the discussion. Careful structure and plan-ning yield dividends. Videotapes of such groups can beeffective change agents when health professionals viewthem. Above all, patients invariably provide suggestionsdifferent from those that group after group of cliniciansand administrators characteristically pursue.

As an example, preparing for the talk that generatedthis article, I convened a focus group on my flight fromBoston to San Francisco. I gathered together 2 flight at-tendants and 3 passengers, told them why I was travelingwest, and asked them what they thought about the notionof hospitalists and hospital medicine.

The first response, from a 50-year-old flight attendant,was, “I can’t believe you doctors are doing this to us. Youare going to separate us even further from our own doc-tors. I can’t believe American medicine is coming to this!”I asked, “If you had a choice between care by a younghotshot on the wards who knows everything about mod-ern medicine, versus your long-time, older doctor whoknows you well but may not be keeping up with all thenew technologies, who would you choose?” The partici-pants were unanimous. They chose their primary carephysician, arguing that there remains so much art inmedicine that the science we invariably trumpet is not,for them, the deciding factor. They noted also that hospi-tal medicine sounds like an arduous job. When I toldthem that 25% of hospitalists care for more than 16 pa-tients at a time, they said, “Sounds like they are going toburn out quickly. What do you think their next job willbe?”

When queried about what they would ask for if theirhospital had a hospital medicine program, one said, “Thiscould work OK, but give me a telephone. It’s fine by me totalk to my regular doctor on the telephone. She doesn’thave to show up and look at me. If I hear from her everyday, or know I can reach her for a question on my mind,that will help a lot.”

Out of such a suggestion might grow a hospital

medicine system that builds in daily contact betweenthe primary care physician and the patient. In 20 minutes,an ad hoc group both zeroed in on questions critical tothe future evolution of hospital medicine and suggested astrategy for the primary care physician that may provemost worthwhile.

SURVEYING LARGE NUMBERS OFPATIENTSGathering aggregate data from many patients is the thirdway to inform creative and productive decision making.There are 2 types of such surveys. One provides insightinto patient desires and expectations. Another gathers pa-tient perceptions after hospitalization or an office visit.

When designing a survey instrument, it is important todraw on both the patient’s and the clinician’s perspective.The most salient issues emerge from focus groups andindividual interviews. Invariably, there are surprises.Contrary to the expectations of hospital administrators,when the Picker Institute, a not-for-profit organizationdedicated to learning from patients in an organized way,designed its first inpatient surveys, they learned from pa-tients that they were not all that interested in the hospitalfood or parking. They were far more worried about paincontrol, information and education, and planning fordischarge.4

Postdischarge surveys ask patients to serve as expertwitnesses to their care, and it is far more helpful to gathertheir reports than their ratings.5 Reports are derived fromsuch questions as, “Did the doctor tell you about the sideeffects of the medicines you may encounter once home?”From such a question, a hospital medicine service mightlearn that 25% say “no.” Such information is both clearand actionable. It provides ample focus for developingand subsequently evaluating a systematic approach de-signed to generate better results in the future.

In contrast, a question such as, “Did the staff do a goodjob preparing you for your discharge?” generates a ratingthat is less actionable and discrete. Knowing that 25% ofpatients judge such preparation as “not very good” pointsfar less well toward potential improvements.

As the field of hospital medicine evolves and develops,it is important not only to generate and catalog patientexperiences, but also to share findings. Benchmarks willemerge that can help the movement leap ahead. For ex-ample, at the beginning of its efforts to validate its ques-tionnaires, the Picker Institute found that 1 of 64 hospi-tals participating in our first national survey of hospital-ized patients proved particularly adept at preparingpatients for discharge.6 We asked if staff were doing any-thing special before patients went home and learned thatbefore discharge, staff required patients and their familiesto write down any questions they had. Discharge oc-curred only after the patient had each of these questionsanswered. By sharing expenses with such simple proven

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strategies, we can enhance our approach to patient care ina time-saving, cost-effective manner.

Finally, the best witnesses to care may be family andfriends, not the patients or the clinicians. In today’s acutecare hospital, patients lie in bed often critically ill. Terri-fied, confused, or obtunded, they wonder whether andwhen they will see their homes again. In contrast,clinicians keep their distance for complex reasons, rang-ing from personal needs to systems inadvertently de-signed to maintain such separation. In many respects,family and friends are in between, and we should drawcarefully on their perceptions about where we go wrongand how we might do better. Interviews, focus groups,and surveys involving families and friends can bear richfruit.7,8

LOOKING AHEAD

The simple strategies I propose have in them the seeds ofa system of care based on a principle of production, gov-ernance, and accountability shared and created by pa-tients working closely with health professionals.9 At atime of frightening instability and change in hospital care,those working in the new field of hospital medicine areideally placed to develop systems that draw closer to-gether patients and those who care for them. The first stepis to listen very carefully to those we serve.

REFERENCES1. Gerteis M, Edgman-Levitan S, Daley J, Delbanco TL.

Through the Patient’s Eyes: Understanding and PromotingPatient-centered Care. San Francisco: Jossey-Bass Publish-ers, 1993.

2. Laine C, Davidoff F, Lewis CE, et al. Important elements ofoutpatient care: a comparison of patients’ and physicians’opinions. Ann Intern Med. 1996;125:640–645.

3. Delbanco TL, Daley J, Walzer J, Winker MA. Clinicalcrossroads: an invitation [comment]. JAMA. 1995;274:76–77.

4. Cleary PD, Edgman-Levitan S, Walker JD, Gerteis M, Del-banco TL. Using patient reports to improve medical care: apreliminary report from 10 hospitals. Qual Manag HealthCare. 1993;2:31–38.

5. Cleary PD, Edgman-Levitan S. Health care quality. Incorpo-rating consumer perspectives. JAMA. 1997;278:1608–1612.

6. Cleary PD, Edgman-Levitan S, Roberts M, et al. Patientsevaluate their hospital care: a national survey. Health Aff(Millwood). 1991;10:254–267.

7. Vom Eigen KA, Walker JD, Edgman-Levitan S, Cleary PD,Delbanco TL. Carepartner experiences with hospital care.Med Care. 1999;37:33–38.

8. Vom Eigen KA, Walker JD, Edgman-Levitan S, Cleary PD,Delbanco TL. A comparison of carepartner and patient ex-periences with hospital care. Fam Syst Health. 2000;18:191–203.

9. Delbanco TL, Berwick DM, Boufford JI, et al. Healthcare in aland called peoplepower: nothing about me without me.Health Expect. 2001;4:144–150.

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