Personal accounts in medical encounters

214 Pages·2015·5.52 MB·English

Bente Prytz Mjølstad
KNOWING PATIENTS
AS PERSONS
A theory-driven, qualitative study of the
relevance of person-related knowledge
in primary health care
Thesis for the degree of Philosophiae Doctor
Trondheim, September 2015
Norwegian University of Science and Technology
Faculty of Medicine
Department of Public Health and General Practice,
General Practice Research Unit
NTNU
Norwegian University of Science and Technology
Thesis for the degree of Philosophiae Doctor
Faculty of Medicine
Department of Public Health and General Practice,
General Practice Research Unit
© Bente Prytz Mjølstad
ISBN 978-82-326-1100-3 (print)
ISBN 978-82-326-1101-0 (digital)
ISSN 1503-8181
Doctoral theses at NTNU, 2015:222
Printed by NTNU Grafisk senter
“In hospitals, the diseases stay and the people come and go.
In general practice, the people stay and the diseases come and go”
- Iona Heath
Illustration by Ragnhild Gjerstad.
Reproduced with permission from Utposten, 1992, (7/8): 309.
Norsk sammenfatning
Kunnskap om pasienter som personer. En teori-drevet kvalitative studie av relevansen
personrelatert kunnskap kan ha i primærhelsetjenesten.
Det er økende dokumentasjon for at belastende livserfaring og alvorlige hendelser i livet kan
være utslagsgivende for helsa, noe vi i dag har fått innsikt i bl.a. ved hjelp av moderne
kunnskap om stressfysiologi. Den nye fagkunnskapen tilsier at biografisk og personrelatert
kunnskap om pasienter er medisinsk relevant, men slik kunnskap har tradisjonelt blitt lite
vektlagt innenfor biomedisinen; den dominerende forståelsesrammen for dagens medisinske
praksis. Det overordnede formålet med dette prosjektet har vært å utforske og å identifisere
hva allmennlegers personrelaterte kunnskap om egne pasienter består av, og om allmennleger
vurderer slik kunnskap som medisinsk relevant. Videre å undersøke i hvilken grad pasienter
som er innlagt til et kortvarig rehabiliteringsopphold validerer informasjonen fra sin fastlege
med hensyn til personrelatert kunnskap, samt å utforske om denne kunnskapen ble gjort
relevant under oppholdet.
Prosjektet har blitt gjennomført innenfor rammen av to typer studier; fokusgruppeintervju av
allmennleger og en intervensjonsstudie på en rehabiliteringsavdeling på et sykehjem. I første
del ble to grupper av allmennleger (seniorer med mye erfaring og juniorer med mindre
erfaring) bedt om å diskutere i hvilken grad de har slik kunnskap om pasienter og om denne
kunnskapen kan være medisinsk relevant (artikkel I). I intervensjonsstudien ble fastleger
telefonintervjuet om deres pasienter som nylig hadde blitt innlagt på en
rehabiliteringsavdeling på et sykehjem. Informasjonen fra telefonintervjuene ble
sammenholdt med hva pasientene kunne fortelle om seg selv og sin livshistorie i påfølgende
individuelle dybdeintervjuer. På den måten kunne vi utforske i hvilken grad allmennlegene
faktisk hadde personrelatert kunnskap om sine pasienter. Både fastlegene - og pasientene
selv- ble også spurt om hva de mente var vesentlig å legge vekt på under
rehabiliteringsoppholdet (artikkel II). I artikkel III har vi sammenlignet og diskutert tre ulike
perspektiver på pasientenes behov når de ble innlagt i rehabiliteringsavdelingen; 1) fastlegens
anbefaling på vegne av sin pasient 2) hva pasienten selv vurderte som mest sentralt og 3)
hvordan institusjonen responderte på disse individuelle behovene.
Både erfarne og mindre erfarne allmennleger som deltok i fokusgruppene vektla
personrelatert kunnskap om pasienter som viktig, og identifiserte flere hindre som gjør det
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vanskelig å dokumentere og overføre slik kunnskap til annet helsepersonell. De erfarne
allmennlegene vektla personrelatert kunnskap om pasienter som medisinsk relevant i større
grad enn de mindre erfarne legene.
De fleste av fastlegene som deltok i intervensjonsstudien var i stand til å gi en adekvat
beskrivelse av pasientenes personlighet, og de hadde mye kunnskap om pasientenes yrkesliv
og nære relasjoner (partner, barn). Fastlegene hadde mindre kunnskap om pasientenes
interesser (hobbyer, fritidsaktiviteter), sosialt nettverk og relasjoner til foreldre og søsken.
Fastlegene hadde lite eller ingen kunnskap om pasientenes barndom, oppvekst vilkår og
betydningsfulle livshendelser. Noen av fastlegene ble overrasket over hvor lite de egentlig
visste om pasienter som de hadde kjent i mange år (gjennomsnitt varighet av lege-pasient
forhold var 15 år). De fastlegene som hadde et mer personlig lege-pasient forhold til sine
pasienter var i større grad i stand til å formulere anbefalinger som stemte overens med
pasientens uttrykte ønsker og behov. Pasientens ønsker og behov varierte mye, men var ofte
nært knyttet til deres livsverden.
Tiltross for institusjonens intensjon om å lage individuell behandlingsplaner for pasientene,
var tilnærmingen i stor grad standardisert og tok i liten grad hensyn til allmennlegenes
anbefalinger og pasientenes individuelle ønsker, selv der disse lå innenfor hva som hadde
vært mulig å få til på institusjonen. I avhandlingens innledning gis en historisk fremstilling av
en utvikling der pasienten som person ser ut til å ha blitt borte i medisinen. Avhandlingens tre
artikler diskuterer behovet for en mer fleksibel og person-senteret tilnæring til pasienter slik at
helsevesenet i større grad kan gjenvinne sin ”humanitet” og bli i stand til å gi genuint
skreddersy behandling som i større grad tar hensyn til pasientens spesifikke og uttrykte behov.
I avhandlingens diskusjonsdel beskrives ulike tilnærminger til hvordan personen kan
gjeninnføres i medisinen, herunder en humanistisk og en teknologisk variant av
persontilpasset medisin, foruten narrativt basert medisin.
Kandidat/ Institutt: Bente Prytz Mjølstad, Institutt for samfunnsmedisin, Det medisinske
fakultet, NTNU.
Hovedveileder: Professor Irene Hetlevik dr.med.
Biveiledere: Professor Anna Luise Kirkengen dr.med, Professor Linn Getz ph.d.
Finansieringskilder: Allmennmedisinsk forskningsfond; Allmennmedisinsk forskningsenhet
i Trondheim, Institutt for samfunnsmedisin, NTNU; Allmennmedisinsk forskningsutvalg,
Nidarosfondet til fremme av allmennmedisinen i Trøndelag.
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Abstract
A growing body of research documents, that adverse life experiences can have a decisive
impact on people’s health. However, traditional biomedicine, the dominant perspective
through which today’s medical practice is conceptualized, has placed little emphasis on expert
findings, such as those within modern stress physiology, indicating that biographical and
person-related knowledge have medical relevance. The primary aim of this project was to
explore the person-related knowledge general practitioners (GPs) had about their patients and
the degree to which they ascribed medical relevance to it. We also sought to assess the
importance given to person-related knowledge by patients undergoing rehabilitation, and to
explore the interactions between GPs and health care personnel at a nursing home
rehabilitation unit regarding the transfer of such knowledge.
The project consisted of three phases. In practice, these were carried out within the framework
of two consecutive studies: first, focus group interviews with GPs and, later, a two-part
intervention study at a nursing home rehabilitation unit. In the first phase, (focus group
interview study), two sets of GPs (seniors with more experience, and juniors with less) were
asked to discuss the extent to which knowledge about patients as persons might be medically
relevant. The next two phases were carried out within the context of the intervention study.
GPs were interviewed by telephone regarding the person-related knowledge they had about
patients who had recently been referred to a nursing home rehabilitation unit. Information
from those interviews was then compared to what the patients themselves related during in-
depth interviews. In this way, we could determine the extent and accuracy of the person-
related knowledge GPs actually had acquired. In the final phase of the project, we discussed
the patients’ needs upon admission from three perspectives: 1) the GPs’ recommendations on
the patients’ behalf; 2) the needs the patients themselves considered most important to have
addressed; 3) how the institution responded to the patients’ individual needs.
Both groups of focus study GPs considered person-related knowledge about patients to be
important, those with more experience attributing greater relevance to it than those with less
experience. Members of both groups identified various factors complicating both the
documentation of such information and its transfer to other health care personnel.
Most of the GPs participating in the intervention study could describe the personality of their
patients adequately and, to some extent, their working life and close relationships (partner,
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children). They had less knowledge about their patients’ interests (hobbies, activities), social
networks and relationships to parents and siblings. They had little or no knowledge, however,
about their patients’ childhood as regards either facts or conditions, or significant events or
experiences. Some of the GPs expressed surprise at how little they actually knew, even about
people whom they had been treating for many years (15 years was the average duration of the
doctor-patient relationships).
While all the GPs were able to formulate treatment/rehabilitation recommendations for their
patients, the suggestions of the physicians with more personal knowledge of their patients
came closer to reflecting the needs and wishes expressed by the patients themselves. These
varied greatly, often connected to the patients’ living conditions and life-world.
The institution’s expressed intention was to create individualized patient treatment plans.
Nonetheless, those composed by the rehabilitation personnel consisted primarily of
standardized elements. Even though many of the GPs’ recommendations and the patients’
wishes fell well within what the institution was equipped to offer, these were barely addressed
by or integrated into the treatment actually provided.
All three articles upon which this dissertation is based discuss the need for a more flexible and
person-oriented approach to patients. This would enable public health services to provide
more genuinely tailored treatment which, to a greater extent, takes the individual patient’s
specific life-world into consideration.
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Contents
Norsk sammenfatning ............................................................................................................................ i
Abstract ................................................................................................................................................. iii
Contents .................................................................................................................................................. v
Acknowledgments .................................................................................................................................. 9
List of papers ....................................................................................................................................... 12
Selected abbreviations ......................................................................................................................... 13
1 Prologue ........................................................................................................................................ 15
1.1 Becoming a GP..................................................................................................................... 15
1.2 A professional concern conceptualized .............................................................................. 15
1.3 Being a Norwegian GP at the dawn of 21st century ........................................................... 17
2 Introduction ................................................................................................................................. 21
2.1 Overview of this thesis ........................................................................................................ 21
2.2 The nature and goals of medicine ....................................................................................... 22
2.3 When did the person disappear from medicine – and how could that happen? ............... 25
2.3.1 Western medicine: from Hippocrates to Descartes and Linnè .............................. 25
2.3.2 The rise of modern medicine: hospitals and the scientific method ....................... 28
2.3.3 Bedside medicine and the development of general practice ................................ 30
2.4 Different development lines in medical thinking and practicing ........................................ 31
2.4.1 Perspectives on medicine: medical anthropology and sociology .......................... 32
2.4.2 The subjective turn: psyko-neuro-immunology and phenomenology ................... 35
2.4.3 Development of patient-centered medicine and modern family medicine .......... 38
2.5 The nature of medical knowledge ....................................................................................... 42
2.5.1 Knowledge traditions in medicine .......................................................................... 45
2.5.2 The origin of evidence-based medicine.................................................................. 47
2.5.3 Medical decision making ........................................................................................ 49
2.6 A situational analysis of contemporary medicine ............................................................... 50
2.6.1 Public health - and the role of medical progress .................................................... 50
2.6.2 Social determinants of health ................................................................................ 51
2.6.3 Challenges in health care services: society ............................................................ 53
2.6.4 Challenges in health care services: general practice .............................................. 56
2.7 Future challenges for providing health care to the elderly ................................................. 58
2.8 Biologically embedded lifetime experiences....................................................................... 59
2.9 The patient as a person in medicine ................................................................................... 61
3 Theoretical framework ................................................................................................................ 67
3.1 Ontology and epistemology ................................................................................................ 68
3.2 The lifeworld and the lived body ......................................................................................... 69
3.3 A methodology for studying the particular ......................................................................... 70
4 Aims of the study ......................................................................................................................... 72
5 Methods and Material ................................................................................................................. 73
5.1 Methodological reflections and choice ............................................................................... 73
5.2 Ethical considerations of particular relevance .................................................................... 75
5.2.1 Approaching vulnerable persons when the aims are scientific .............................. 75
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5.2.2 Qualitative interviews with vulnerable persons ..................................................... 76
5.3 Study design ........................................................................................................................ 77
5.3.1 The larger research project . 77
5.3.2 The focus group study ............................................................................................ 78
5.3.3 The intervention study . 81
5.4 Data analysis ........................................................................................................................ 86
5.4.1 Phenomenology and hermeneutics ....................................................................... 86
5.4.2 Analyzing qualitative interviews ............................................................................. 88
5.4.3 Transcription ........................................................................................................... 91
5.4.4 Analyzing the data from the focus group study ..................................................... 92
5.4.5 Analyzing the data from the intervention study .................................................... 95
5.5 Ethical formalities ................................................................................................................ 96
6 Summary of results ...................................................................................................................... 99
6.1 Synopsis of papers ............................................................................................................... 99
6.1.1 Paper 1 .................................................................................................................... 99
6.1.2 Paper 2 .................................................................................................................. 100
6.1.3 Paper 3 .................................................................................................................. 102
6.2 Results not published in the papers .................................................................................. 103
7 Key findings ............................................................................................................................... 105
8 Discussion of results................................................................................................................... 106
8.1 De-personalized health care; frustrated patients and health personnel .......................... 107
8.2 Inadequate knowledge production? ................................................................................. 110
8.2.1 Evidence based medicine meets primary care reality .......................................... 110
8.2.2 General practice needs an adequate knowledge base ........................................ 111
8.3 Inadequate implementation of new relevant knowledge ................................................ 113
8.4 A contemporary renaissance for the person in medicine ................................................. 114
8.4.1 The hi-tech version of personalized medicine; a hopeful vision? ........................ 117
8.4.2 4 P medicine in tomorrow’s general practice? ..................................................... 118
8.4.3 Humanistic versions of personalized medicine; person centered medicine ........ 120
8.5 Towards a person centered health care: might narrative medicine be part of the answer?
........................................................................................................................................... 123
8.5.1 Narrative competence . 125
9 Discussion of method: evaluation of the soundness and validity of the study ...................... 127
9.1 Evaluating qualitative research ......................................................................................... 127
9.2 Reflections regarding design, method and material ......................................................... 128
9.3 Reflections regarding the credibility and trustworthiness of the study ........................... 131
9.4 Reflections regarding my roles in this project ................................................................... 132
9.5 Transferability ................................................................................................................... 133
10 Implications and future perspectives ....................................................................................... 135
10.1 Person-centered health care seen in light of scientific responsibility .............................. 135
10.2 Clinical medicine in the future .......................................................................................... 138
11 Closing remarks ......................................................................................................................... 141
12 Epilogue ...................................................................................................................................... 143
12.1 Scenes from a nursing home ............................................................................................. 144
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