Ccp

| 1Desenvolvimento de um Sistema Integrado para Avaliao Inicial dos Doentes Oncolgicos admitidos em Cuidados Paliativos

desenvolvimento de um sistema integrado para avaliao inicial dos doentes oncolgicos admitidos em cuidados paliativos

jos antnio saraiva ferraz gonalves

porto

2011

Orientador: Professor Doutor Rui NunesCo-orientador: Dr. Nigel Sykes

2 | Desenvolvimento de um Sistema Integrado para Avaliao Inicial dos Doentes Oncolgicos admitidos em Cuidados Paliativos

Desenvolvimento de um Sistema Integrado para a Avaliao Inicial dos Doentes Oncolgicos admitidos em Cuidados Paliativos.

Jos Antnio Saraiva Ferraz Gonalves

do autor

978-989-xxxxxxxxxxxxx

2012

Ana Meireles

A Medisa

ttulo

autor

edio

isbn

ano

edio do texto

acabamento


Tese de candidatura ao grau de doutorapresentada Faculdade de Medicina da Universidade do Porto


Artigo 48, pargrafo 3

A Faculdade no responde pelas doutrinas expedidas na dissertao

Regulamento da Faculdade de Medicina da Universidade do Porto

Decreto Lei n 19337, de 29 de Janeiro de 1931


Jri da Prova de Doutoramento

Presidente

Vogais

Reitor da Universidade do Porto

Doutor Jos Eduardo Torres Eckenroth GuimaresPofessor Catedrtico da Faculdade de Medicina da Universidade do Porto

Doutora Maria Amlia Duarte FerreiraPofessora Catedrtica da Faculdade de Medicina da Universidade do Porto

Doutor Rui Manuel Lopes NunesPofessor Catedrtico da Faculdade de Medicina da Universidade do PortoOrientador da tese

Doutora Guilermina Maria da Silva RegoPofessora Auxiliar da Faculdade de Medicina da Universidade do Porto

Doutora Marlia Assuno Rodrigues Ferreira DouradoPofessora Auxiliar da Faculdade de Medicina da Universidade de Coimbra

Doutor Antnio Jos Feliciano BarbosaPofessor Auxiliar Convidado da Faculdade de Medicina da Universidade de Lisboa


corpo catedrtico da faculdade de medicina da universidade do porto

Professores Catedrticos Efectivos

Alberto Manuel Barros da SilvaAltamiro Manuel Rodrigues Costa PereiraAntnio Albino Coelho Marques Abrantes TeixeiraAntnio Carlos Freitas Ribeiro SaraivaDaniel Filipe Lima MouraDeolinda Maria Valente Alves Lima TeixeiraFrancisco Fernando Rocha GonalvesIsabel Maria Amorim Pereira RamosJoo Francisco Montenegro Andrade Lima BernardesJorge Manuel Mergulho Castro TavaresJos Agostinho Marques LopesJos Carlos Neves da Cunha AreiasJos Eduardo Torres Eckenroth GuimaresJos Henrique Dias Pinto de BarrosJos Manuel Lopes Teixeira AmaranteJos Manuel Pereira Dias de Castro LopesManuel Alberto Coimbra Sobrinho SimesManuel Antnio Caldeira Pais ClementeManuel Jesus Falco Pestana VasconcelosMaria Amlia Duarte FerreiraMaria Dulce Cordeiro MadeiraMaria Ftima Machado Henriques CarneiroMaria Leonor Martins Soares DavidPatrcio Manuel Vieira Arajo Soares SilvaRui Manuel Almeida Mota CardosoRui Manuel Lopes Nunes

10 | | Desenvolvimento de um Sistema Integrado para Avaliao Inicial dos Doentes Oncolgicos admitidos em Cuidados Paliativos

Professores Catedrticos Jubilados e Aposentados

Abel Jos Sampaio da Costa TavaresAbel Vitorino Trigo CabralAlexandre Alberto Guerra Sousa PintoAmndio Gomes Sampaio TavaresAntnio Augusto Lopes VazAntnio Carvalho Almeida CoimbraAntnio Fernandes da FonsecaAntnio Fernandes Oliveira Barbosa Ribeiro BragaAntnio Germano Pina Silva LealAntnio Jos Pacheco PalhaAntnio Lus Tom da Rocha RibeiroAntnio Manuel Sampaio de Arajo TeixeiraBelmiro dos Santos PatrcioCndido Alves Hiplito ReisCarlos Rodrigo Magalhes RamalhoCassiano Pena de Abreu e LimaDaniel Santos Pinto SerroEduardo Jorge Cunha Rodrigues PereiraFernando de Carvalho Cerqueira Magro FerreiraFernando Tavarela VelosoFrancisco de Sousa LHenrique Jos Ferreira Gonalves Lecour de MenezesJos Augusto Fleming TorrinhaJos Carvalho de OliveiraJos Fernando Barros Castro CorreiaJos Lus Medina VieiraJos Manuel Costa Mesquita GuimaresLevi Eugnio Ribeiro GuerraLus Alberto Martins Gomes de AlmeidaManuel Augusto Cardoso de OliveiraManuel Machado Rodrigues GomesManuel Maria Paula BarbosaMaria da Conceio Fernandes Marques MagalhesMaria Isabel Amorim de AzevedoMrio Jos Cerqueira Gomes BragaSerafim Correia Pinto Guimares

Valdemar Miguel Botelho dos Santos CardosoWalter Friedrich Alfred Osswald

| 11 11Desenvolvimento de um Sistema Integrado para Avaliao Inicial dos Doentes Oncolgicos admitidos em Cuidados Paliativos

Para a ngela, o Daniel e o Ricardo.


You may say Im a dreamerBut Im not the only one

John Lennon


agradecimentos

Num trabalho que representa um corte num processo de investigao que comeou h vrios anos, a par de outros projectos que se vm a realizar, h muitas pessoas que contribuiram e cujo trabalho merece reconhecimento. Desde logo aos investigadores que participaram em todos os projectos que o compem. Tenho de agradecer ao meu orientador o Professor Doutor Rui Nunes pelo seu encorajamento, pelas suas sugestes e pela leitura crtica deste trabalho. Agradeo tambm ao Dr. Nigel Sykes, meu coorientador, as sugestes, sobretudo no que respeita investigao que consta dos captulos 4 e 5. Agradeo ainda Professora Doutora Guilhermina Rego pelo seu apoio e leitura crtica da tese.

No posso esquecer a minha equipa na Unidade de Cuidados Paliativos da Rede do IPO - Porto sem a qual este trabalho no teria sido possvel. Tambm a colaborao dos doentes e das suas famlias foi indispensvel. E por ltimo, mas sem dvida mais importante, minha famlia que tornou possvel o atingir deste e doutros objectivos.


ndice

Introduo

Introduo A Portuguese Palliative care unit Objectivos do desenvolvimento do sistema integrado para a avaliao inicial dos doentes oncolgicos admitidos em cuidados paliativos

Comunicao

Comunicao/Informao Diagnosis disclosure in a portuguese oncological centre Breaking bad news: experiences and preferences of advanced cancer patients at a portuguese oncology centre Sntese

Avaliao da Conscincia

Avaliao da conscincia Validation of a conscienciousness levels scale for paliative care Avaliao da funo cognitiva

1

2

3

21

23

29

35

39

41

43

53

61

63

65

67

75


Avaliao dos doentes sem alteraes cognitivas

Avaliao dos doentes sem alteraes cognitivas O mtodo de Delfos Discusso

Avaliao dos doentes com alteraes cognitivas

Avaliao dos doentes com alteraes cognitivos Estudo 1 Estudo 2 Discusso

Concluso

Concluso

Resumo

Resumo

Abstract

Abstract

Anexos

Artigos publicados

Artigos publicados como membro do Research Steering Committee da

Associao Europeia de Cuidados Paliativos

4

5

6

7

8

9

10

11

79

81

83

91

97

99

101

107

109

113

115

119

121

125

127

131

157

273


ndice de quadros

Distribuio das doenas no oncolgicas.

Mtodo de avaliao da confuso.

Lista inicial de sintomas/problemas.

Lista final.

Forma final do instrumento.

Formulrio de avaliao.

Regras para aplicao do mtodo de avaliao do sofrimento.

Dados demogrficos.

Propores de concordncia.

Dados demogrficos.

Quadro 1

Quadro 2

Quadro 3

Quadro 4

Quadro 5

Quadro 6

Quadro 7

Quadro 8

Quadro 9

Quadro 10


1INTRODUO


Em Portugal morrem cerca de 100 000 pessoas em cada ano, das quais cerca de 20% de cancro [1]. Uma percentagem ainda maior morre de doenas cardiovasculares, mas tambm morrem muitos doentes de doenas pulmonares, renais, hepticas, neurolgicas, SIDA, etc. A maioria destas so hoje doenas crnicas, com um perodo mais ou menos longo em que os tratamentos destinados a alterar o seu desenvolvimento natural no so eficazes. Nesta fase, frequentemente, os doentes continuam a ser tratados da mesma

maneira como se a sua situao fosse ainda reversvel ou so afastados com a justificao de que no h nada a fazer, mesmo que o doente continue a ser seguido ou esteja mesmo internado. Esta situao deve-se ao modelo de medicina que se estabeleceu devido ao seu prpriodesenvolvimento. De facto, o grande desenvolvimento que a medicina conheceu no sculoXX, sobretudo na segunda metade, permitiu que finalmente se pudesse modificar

eficazmente o desenvolvimento natural de muitas doenas, curar algumas e evitar

o aparecimento de doenas infecciosas que no passado constituram flagelos da

humanidade. A varola foi mesmo erradicada. No entanto, este desenvolvimento levou situao actual em que o treino dos mdicos se focou exclusivamente na cura ou no prolongamento da vida, pelo que quando tal no possvel ficam desarmados e tm

dificuldade em responder aos problemas dos doentes.

O reconhecimento da situao atrs descrita deu origem ao chamado movimento dos hospcios - Cicely Saunders fundou o St. Christophers Hospice em Londres em 1967. Esta a data geralmente reconhecida como a que marca o incio dos cuidados paliativos.

introduo


No entanto, Geoffrey Hanks revelou recentemente que j existia um servio no Royal Marsden, o Continuity Care Service fundado em 1964, com a finalidade de tratar os doentes oncolgicos com doena avanada incurvel [2]. Considerava-se que, apesar de no haver possibilidade de deter a doena, a medicina possua recursos que, se usados adequadamente, podiam responder aos problemas destes doentes. Balfour Mount abriu o seu Servio de Cuidados Paliativos em 1975 no Royal Victoria Hospital de Montreal, empregando pela primeira vez a designao cuidados paliativos, que a partir da se generalizou [3].

Mais tarde, em 1990, a Organizao Mundial de Sade (OMS) num documento intitulado Cancer Pain Relief and Palliative Care reconheceu a importncia dos cuidados paliativos e considerou o tratamento da dor e de outros sintomas como uma das suas prioridades na luta contra o cancro, a par da preveno primria, do diagnstico precoce e do tratamento curativo [4]. Nesse importante documento, a OMS afirmava que durantemuito tempo ainda os cuidados paliativos sero a nica soluo, ao mesmo tempo humana e realista, para numerosos doentes, e nada mais importante, para a qualidade de vida desses doentes, que a difuso e a aplicao dos conhecimentos j disponveis sobre o tratamento da dor e dos outros sintomas. Os cuidados paliativos so consideradosao mesmo nvel dos outros meios de interveno e no inferiores ou secundrios.

Em 2002 a OMS referiu-se aos cuidados paliativos do seguinte modo [5]: Os cuidados paliativos melhoram a qualidade de vida dos doentes e das suas famlias que encaram uma doena ameaadora da vida, proporcionando alvio da dor e de outros sintomas, suporte espiritual e psicossocial desde o diagnstico at ao fim da vida e no luto.

Os cuidados paliativos:

Proporcionam o alvio da dor e de outros sintomas perturbadores;Afirmam a vida e vem a morte como um processo normal;

No pretendem apressar ou adiar a morte;Integram os aspectos psicolgicos e espirituais nos cuidados aos doentes;Oferecem um sistema de suporte para ajudar os doentes a viver to activamente quanto possvel at morte;Oferecem um sistema de suporte para ajudar as famlias a lidar com a doena e o luto;


Usam uma estratgia de equipa para abordar as necessidades dos doentes e das suas famlias, incluindo aconselhamento no luto, se indicado;Melhoram a qualidade de vida e possivelmente tambm influenciam positivamente o

curso das doenas;So aplicveis cedo no decurso das doenas, em conjuno com outras teraputicas que

pretendem prolongar a vida, tais como a quimioterapia ou a radioterapia, e incluem as investigaes necessrias para melhor compreender e tratar complicaes clnicas perturbadoras.

Assim a OMS considera que os cuidados paliativos no se devem limitar ao fim da vida,

mas considera que deveriam estar disponveis desde o diagnstico. A ideia fundamental a de que os cuidados paliativos ajudem as pessoas a viver o mais activamente possvel e no que se concentrem apenas no que rodeia a morte. A ideia proporcionar uma vida digna e no apenas uma morte digna, aspecto em que outros movimentos se concentram, como os que defendem as formas de morte assistida, as quais, como afirma a OMS no

se incluem na prtica dos cuidados paliativos.

A realidade , porm, bem diferente porque o que se verifica na prtica que os

doentes so muitas vezes referenciados muito tarde para cuidados paliativos [6]. H mesmo uma tendncia, pelo menos em alguns pases, para tratar cada vez mais agressivamente os doentes oncolgicos [7]. No entanto, um artigo recente que comparou o tratamento padro do cancro do pulmo de no-pequenas clulas com o tratamento padro mais a interveno precoce dos cuidados paliativos revelou que os doentes em quem houve interveno precoce dos cuidados paliativos tiveram uma melhor qualidade de vida, viveram mais tempo e foram submetidos a tratamentos menos agressivos [8].

Os cuidados paliativos comearam por causa dos doentes oncolgicos, mas hoje considera-se que devem ser prestados independentemente da doena crnica subjacente. A realidade mostra, no entanto, que os doentes oncolgicos continuam a ser os mais referenciados para cuidados paliativos, como acontece no nosso servio em que mais de 95% dos doentes so oncolgicos. Estes dados so semelhantes aos referentes a outros pases. Por exemplo, num estudo realizado na Alemanha verificou-se que 96,5% dos

4182 doentes admitidos em unidades de cuidados paliativos eram doentes oncolgicos [9]. Os no oncolgicos eram 147 (3,5%) e a sua distribuio por doena pode ver-se


no quadro 1. Isto acontece por uma variedade de razes das quais se destacam a maiorfacilidade em estabelecer o prognstico nos doentes oncolgicos e a conotao negativa que o cancro tem relativamente a outras doenas igualmente, ou mais, letais.

Sistema Nervoso

Doena do neurnio motorAcidente vascular cerebralDemnciaEsclerose mltiplaOutras

Doenas Cardiovasculares

Insuficincia cardaca crnica

Doena arterial oclusivaEnfarte do miocrdioOutras

Doenas Pulmonares

PneumoniaDoena pulmonar obstrutiva crnicaOutras

Sistema Musculoesqueltico

OsteoporoseEspinalOutras

Sistema Urogenital

Insuficincia renal

Outras

Sistema HematopoiticoDoenas HepticasSistema DigestivoOutras

44 29,9%

20,4%

8,8%

8,2%

6,8%

6,1%

4,1%

4,1%

11,6%

12106410

30

121044

13

544

12

1234

10

82

9

6

6

17

Quadro 1 | Distribuio das doenas no oncolgicas [9].

Doena n %


Em Portugal os cuidados paliativos comearam quase 30 anos mais tarde, em 1994, no Centro do Porto do Instituto Portugus de Oncologia (IPO - Porto) por iniciativada Liga Portuguesa contra o Cancro. Tivemos a honra de ser o responsvel pela direco desse servio. Desde ento apareceram outros servios de cuidados paliativos em Portugal mas o seu nmero ainda muito insuficiente para as

necessidades do pas. A recentemente criada Rede Nacional de Cuidados Continuados Integrados prev o desenvolvimento dos cuidados paliativos em todo o pas.

Neste captulo, descreve-se seguidamente o desenvolvimento da primeira unidade de cuidados paliativos portuguesa atravs de um artigo intitulado A Portuguese Palliative Care Unit. Na ltima parte deste captulo referir-nos-emos aos objectivos desta tese e ao modo como esta se vai desenvolver.


a portuguese palliative care unit

jos antnio s. ferraz gonalvesSupport Care Cancer (2000); 9:4-7


10

Support Care Cancer (2000) 9 :47DOI 10.1007/s005200000211 SUPPORTIVE CARE INTERNATIONAL

Jos Antnio S. Ferraz Gonalves A Portuguese palliative care unit

Published online: 28 October 2000Q Springer-Verlag 2000

J.A.S. Ferraz Gonalves (Y)Instituto Portugues de Oncologia,Unidade de Cuidados Continuados,R. Dr. Antnio Bernardino de Almeida,4200-072 Porto, PortugalE-mail: ferrazg6ipoporto.min-saude.pt orferrazg6mail.telepac.ptPhone: c351-2-5073940Fax: c351-2-5506833

Abstract The background to thedevelopment of the first Portu-guese palliative care unit isdescribed. The activities of thispioneer unit in Porto, whichinclude patient assistance, teachingand research, are reported, and thepaper closes with some generalthoughts on the possible ways ofproviding a more rapid response tothe suffering of patients with far

advanced chronic diseases in anenvironment where palliative careis not yet well developed.

Keywords Palliative care 7Portugal

Introduction

Palliative care has its source in the recognition of aproblem: the inadequate treatment of patients withadvanced chronic diseases. This treatment can be inad-equate by excess or default, that is, failure to recognizethe situation and consequent continuation with aggres-sive treatments as if the problem were a reversible one,or abandonment of the patient without support. Suchabandonment occurs not only when patients are senthome, but often in the hospital too. In this situation thepatients can be labelled as terminal and not followedup with the same interest as others: their needs may notbe really considered, and the medications and care theydo receive are often quite irrelevant to their condi-tion.

The start of palliative care is usually dated from thefoundation of St. Christophers Hospice in 1967 byCecily Saunders. In this way the hospice movement wasinitiated. The term palliative care was used officiallyfor the first time in 1975, when Balfour Mount openedthe Palliative Care Service in the Royal VictoriaHospital in Montreal [1]. In 1990, the World HealthOrganization published one of its best-known docu-ments Treatment of cancer pain and palliative care[2], in which the importance of palliative care was

recognized. In this document, the WHO stated thatpalliative care was a priority in the fight against cancer,on the same level as prevention, screening and curativetreatment, and the only solution that was both humaneand realistic for many cancer patients. Palliative medi-cine is now a recognized specialty and is a subject inuniversity medical school curricula in the UnitedKingdom and a few other countries.

Since its beginnings, palliative care has spreadquickly through the world, mainly, like everything else,in the more highly developed countries. In Portugal,palliative care is still taking its first steps. It is the veryfirst of these that is described here.

The beginning

The North Section of the Portuguese League AgainstCancer recognized the cancer patients situationdescribed above and decided to build a palliative careunit to be called Unidade de Cuidados Continuados,which would work closely with the Porto Section of thePortuguese Institute of Oncology. At a certain point inthe course of the project I was invited to be the medicaldirector of the unit. I was a specialist in internal medi-cine and oncology and I accepted the position on one

10

Support Care Cancer (2000) 9 :47DOI 10.1007/s005200000211 SUPPORTIVE CARE INTERNATIONAL

Jos Antnio S. Ferraz Gonalves A Portuguese palliative care unit

Published online: 28 October 2000Q Springer-Verlag 2000

J.A.S. Ferraz Gonalves (Y)Instituto Portugues de Oncologia,Unidade de Cuidados Continuados,R. Dr. Antnio Bernardino de Almeida,4200-072 Porto, PortugalE-mail: ferrazg6ipoporto.min-saude.pt orferrazg6mail.telepac.ptPhone: c351-2-5073940Fax: c351-2-5506833

Abstract The background to thedevelopment of the first Portu-guese palliative care unit isdescribed. The activities of thispioneer unit in Porto, whichinclude patient assistance, teachingand research, are reported, and thepaper closes with some generalthoughts on the possible ways ofproviding a more rapid response tothe suffering of patients with far

advanced chronic diseases in anenvironment where palliative careis not yet well developed.

Keywords Palliative care 7Portugal

Introduction

Palliative care has its source in the recognition of aproblem: the inadequate treatment of patients withadvanced chronic diseases. This treatment can be inad-equate by excess or default, that is, failure to recognizethe situation and consequent continuation with aggres-sive treatments as if the problem were a reversible one,or abandonment of the patient without support. Suchabandonment occurs not only when patients are senthome, but often in the hospital too. In this situation thepatients can be labelled as terminal and not followedup with the same interest as others: their needs may notbe really considered, and the medications and care theydo receive are often quite irrelevant to their condi-tion.

The start of palliative care is usually dated from thefoundation of St. Christophers Hospice in 1967 byCecily Saunders. In this way the hospice movement wasinitiated. The term palliative care was used officiallyfor the first time in 1975, when Balfour Mount openedthe Palliative Care Service in the Royal VictoriaHospital in Montreal [1]. In 1990, the World HealthOrganization published one of its best-known docu-ments Treatment of cancer pain and palliative care[2], in which the importance of palliative care was

recognized. In this document, the WHO stated thatpalliative care was a priority in the fight against cancer,on the same level as prevention, screening and curativetreatment, and the only solution that was both humaneand realistic for many cancer patients. Palliative medi-cine is now a recognized specialty and is a subject inuniversity medical school curricula in the UnitedKingdom and a few other countries.

Since its beginnings, palliative care has spreadquickly through the world, mainly, like everything else,in the more highly developed countries. In Portugal,palliative care is still taking its first steps. It is the veryfirst of these that is described here.

The beginning

The North Section of the Portuguese League AgainstCancer recognized the cancer patients situationdescribed above and decided to build a palliative careunit to be called Unidade de Cuidados Continuados,which would work closely with the Porto Section of thePortuguese Institute of Oncology. At a certain point inthe course of the project I was invited to be the medicaldirector of the unit. I was a specialist in internal medi-cine and oncology and I accepted the position on one


11

5

condition: that I should be allowed to take training inpalliative care, which at that time was only possible inunits outside Portugal.

Over the course of 7 months I visited several Euro-pean units: St. Christophers Hospice and St. HelenaHospice in England; Intituto Nazionale dei Tumori inMilan; La Foundation Rive-Neuve and the AubonneHospital in Switzerland; and Gregorio MarannHospital in Madrid. I believe this was very useful and,in my case, the best approach, because the diversity Isaw showed me different realities, different experi-ences, and different styles of palliative care. Iconcluded that palliative care can be applied in manydifferent conditions, always with the same philosophyand the same principles behind it while the practice isadapted to the local circumstances, and that what isobserved in any palliative care service should be takenas an example of what can be done, rather than a modelto be copied.

The first unit

Because I finished my training period before the unitwas ready, we were allowed to start working with 5beds belonging to the Radiotherapy Service, which hada total of 25 beds. The staff in that service included thenurses who were keen to work in the future palliativeunit, some of whom had had some experience of pallia-tive care in units abroad. Our first patient was admittedon 17 October 1994. This, then, was the day whenpalliative care started in Portugal.

All the personnel, except the chief nurse and myself,were shared between the two services. We starteddoing inpatient care, outpatient care, and consultationin other services within the hospital.

There were various difficulties with this experience:I Problems arising from the physical/architectural set-

up, which did not make it easy for family members tostay with patients, especially at night

I Too few beds for hospital needsI Different treatment of patients in the same serviceI Difficulty in the implementation of specific routines

Other types of problems experienced at this stagewere:I Problems relating to misunderstanding of the

purpose of the new serviceI Referral mainly of patients expected to survive for

only a few daysI Frequent use of the unit as a kind of wastebasket,

that is, not with the idea of sending patients to aplace where they could be more adequately treatedbut to get a bed freeThese early days did also have positive aspects:

I The possibility of offering palliative care at all for thefirst time

Table 2 Evolution of the assistance to patients activity

1995 1996 1997 1998 1999

Inpatient admissions 68 100 221 359 388Outpatient clinic observations 549 1124 1302Internal consultation visits 361 596 910Telephone consultation 449 813Home care visits 212

Table 1 Staff of unit

Doctors 4 with 1 assigned exclusively to home careNurses 24Nursing auxiliaries 16Social worker 1Psychologist 1Nutritionist 1Chaplain 1Driver 1Porters 7Volunteers 15

I The opportunity of spreading the principles of pallia-tive care more easily, because there was more directcontact with doctors in the other service

I Training the team in more specific work with only afew patients

I Possibility of contact with the reality of palliativecare, thus allowing selection (self-selection, at thattime) of people who really wanted to go on workingin palliative care

I Economy because the unit was so small it wascheaper to work together with the other service,which made it possible to maintain adequate contin-uous staffing levels of professionals who needed tobe represented at all times, mainly nurses, withouthaving too many professionals relative to the numberof patientsWe can conclude that this experience was useful,

and perhaps it could be viewed as an example for othercentres where only a small unit can be implemented.

The new unit

Finally, the new unit opened on 25 May 1996. We grewstep by step as more people were involved in the team(Table 1). Initially, we maintained the same activities,adding to them as circumstances allowed (Table 2).

Now we have 20 beds, all in single rooms, whichallows a member of any patients family or a friend tostay at any time.

The unit has had a day centre since 1997: about 20patients can attend for up to 3 days each week, andthey can enjoy many activities.


12

6

Since 1998 we have offered telephone consultationsfor the patients being followed by the unit. Thepatients, their families, or their friends may contact theunit when a problem or a doubt arises, to discuss anadjustment to a medication, or to inform the doctor ofthe effect of a prescription, for example, 24 hours a day.It is usually possible for them to talk with the physicianbetween 09*E00 and 16*E00 oclock, and with a nurseat other times.

In 1999 we started home care. We intend to makethis service one of the most important elements of theunit, so that patients can stay at home where their fami-lies and their own belongings are, that is to say wheretheir lives are centred. However, the traditionalextended family with three generations under one roofproviding support for all members of the family in diffi-cult times is changing. Families are becoming smallerand smaller; most people work outside the home,mainly in the bigger cities, and there will thereforeprobably be more and more difficulties in keepingpatients at home, as has already happened in otherEuropean countries.

Teaching

As this is a pioneer unit in Portugal and in view of itssize, it was planned that it should be a teaching centre.As professionals working exclusively in palliative care,we have an obligation to contribute to the spread ofknowledge in this field. However, the best thing we cando is to go beyond teaching what can be read in booksand reviews and also, most importantly, share ourexperience. This is why we did not start the multidisci-plinary courses until we had completed 3 years of workas a palliative care team.

Our first multidisciplinary course was in October1997. Since then, we have held four each year. Eachcourse is held for 12 professionals: 6 doctors and 6nurses. This small number allows contact with theeveryday life of the unit and with the patients. Eachcourse involves 35 hours from Monday to Friday in1 week. Up to August 2000, 144 professionals from allover the country, even from the islands of Madeira andthe Azores, had undergone training in 12 courses. Wealways have many more candidates than we can admitto the courses, which shows the interest people have inpalliative care and how much they feel the need oftraining in this special field. To help staff who work inour oncological centre but had not been able to get aplace on any of the multidisciplinary courses we held atheoretical course in 2000, which was attended by 35professionals.

In 2000 we held the first continuing education coursefor doctors and nurses who had already completed themultidisciplinary course. And in the future we intend to

hold update courses to maintain interest in palliativecare and ensure that the knowledge applied is current.

Since the beginning of our activities, members of theunits staff have participated in many courses,congresses, and other scientific meetings organized byothers. And, finally, I teach the palliative care portionof the course for the masters degree in bioethics at theMedical School of Oporto University.

Apart from the courses, many doctors, nurses, socialworkers, psychologists, and priests spend variousperiods of time in the unit.

Research

Again, the position this unit occupies in palliative carein Portugal should make research one of its mostimportant activities, on a level with patient assistanceand teaching. These two activities should support andbe supported continuously by research. However,research takes time to produce results, so that we arenot in a hurry to publish research papers, though weare publishing some review papers in Portuguese.However, we have presented some work at congressesof the European Association for Palliative Care and atother congresses, and we intend to start publishing ourresults soon.

The future

The unit is still evolving: in the future there will bemore than 20 beds, and the home care service will bedeveloped and will reach more patients. Teaching ofpalliative care will remain important, and it is probablethat this unit will continue as the main palliative careteaching centre in Portugal. Faculty members of theOporto Medical Schools have been contacted about theidea of introducing undergraduate palliative careteaching into their curricula, but I have not yet receivedany answers this would be a very important step.Research will take up the desired place.

The immediate problem is finding people interestedin working exclusively in palliative care. Unlike otherEuropean countries, Portugal does not have an excessof doctors and nurses, so that recruitment of profes-sionals to the unit will not be easy.

Other remarks

Since the opening of the unit, almost 6 years ago, pallia-tive care has not evolved much further in Portugal.There are a few other experiences, but the overallpicture is very poor. The implementation of palliativecare has been difficult in most countries, and in


13

7

Portugal it will not be any different. Many still seepalliative care not as a resource with its own knowledgeand skills, but as what is offered in places wherenursing and psychological and religious support are themost important aspects whilst the medical input has asecondary, and not especially skilled, role. Somemedical oncologists, for example, claim that theyshould take care of their patients until their death,forgetting that the reality is different in most cases andthat the care patients need when curative treatment isno longer useful must be learned, and is often not whatthey are providing. However, not all patients need tobe treated by palliative care specialists. As in otherspecialties, many patients can be treated by their ownphysicians with some training, but there are difficultsituations that require specialized resources of differenttypes. In addition, research and teaching should becarried out, and usually only specialists have the knowl-edge, the experience, the readiness, and a sufficientlylarge number of patients for this.

Palliative care is now needed in Portugal and mustbe developed. However, I suspect, unfortunately, that it

will be a long time before a serious effort is made to dothis. Nonetheless, something must be done quickly.Palliative care can be provided in many differentcircumstances. Palliative care units are indispensable, inmy view, but home care and inpatient support teamsare examples of other options that would be easier toimplement. In my opinion, it is more important to dosomething useful immediately for patients withadvanced chronic diseases who are suffering unneces-sarily than to wait for conditions that anyone mightimagine to be ideal. When we started, for example,conditions were not ideal, because the unit was not yetready. So, professionals and hospital staff memberswith an interest in this field should start however localconditions allow and then improve their situation at therate that is possible, but without ever forgetting thetraining needed. I also believe that doctors have aspecial responsibility, because if they know and applythe principles and skills of palliative care, even alone,they can have a very important impact on the well-being of their patients with chronic advanced diseases.

References

1. Saunders C (1998) Foreword. In:Doyle D, Hanks GWC, MacDonald N(eds) Oxford Medical Publications,Oxford, pp vix

2. World Health Organization (1990)Traitement de la douleur cancreuse etsoins palliatifs. (Srie de rapports tech-niques 804) WHO, Geneva


A maioria dos doentes com doenas crnicas avanadas tem mltiplos problemas resultantes da sua doena e por vezes tambm dos tratamentos anteriormente efectuados. Acresce que os doentes admitidos em cuidados paliativos apresentam-se em situaes muito diversas a nvel do estado de conscincia, da funo cognitiva, do estado emocional, da funcionalidade, etc. Os doentes podem estar muito dbeis, receosos ou ansiosos. H tambm o problema do trabalho que uma equipa muito ocupada tem de fazer e do tempo que tem disponvel para cada doente. Por isso, uma avaliao extensa pode ser impossvel e pode constituir um fardo para os doentes. Contudo, para ajudar convenientemente os doentes, necessrio identificar e avaliar rigorosamente os seus

problemas principais. Mais tarde, outros problemas de mais baixa prioridade podero ser abordados se for apropriado.

Para resolver os problemas dos doentes necessrio, em primeiro lugar, reconhec-los.Existem vrias escalas para avaliao de mltiplos sintomas e outras desenhadas para avaliar um sintoma isolado como a dor [10] e a fadiga [11], por exemplo. A extensoe os problemas englobados nessas escalas varivel, embora inevitavelmente tenhampontos comuns, nomeadamente no que se refere aos sintomas fsicos mais comuns como dor, dispneia, nuseas, etc. Outro tipo de escalas tambm com pontos comuns com as anteriores so as que se destinam a avaliar a qualidade de vida, como a EORTC QLQ-C15-PAL [12].

O objectivo desta tese no acrescentar uma nova escala s j existentes, embora tambm seja necessrio desenvolver mtodos de avaliao que estejam de acordo com

objectivos do desenvolvimento do sistema integrado para a avaliao inicial dos doentes oncolgicos admitidos em cuidados paliativos


o objectivo do trabalho. Este consiste no desenvolvimento de um sistema para avaliaodos principais problemas dos doentes, nas suas vrias dimenses que se adapte s circunstncias dos doentes.

O sistema deve conter instrumentos que possam avaliar os problemas mais importantes dos doentes com descritores verbais fceis de compreender por todos os doentes sem alteraes da funo cognitiva. Por exemplo, o termo dispneia, incompreensvel para a maioria das pessoas, deve ser substitudo por falta de ar. A extenso tambm importante porque pode tornar a avaliao difcil ou cansativa para os doentes mais debilitados ou fastidioso para os que no tenham na altura muitos problemas. A limitao da extenso um dos objectivos que justifica o desenvolvimento deste sistema.

H ainda o problema da avaliao dos doentes com alteraes cognitivas que impeama comunicao eficaz. Este aspecto particularmente difcil, devido natureza

subjectiva dos sintomas/problemas. No entanto, tambm estes doentes tm de ser avaliados rigorosamente embora de modo diferente. Para isso necessrio desenvolvermtodos de avaliao especficos, adaptados sua situao. Esta uma rea de

interveno particularmente difcil.

Para avaliar o estado cognitivo h que desenvolver ou utilizar instrumentos j validados que se adeqem aos objectivos do sistema. Esse estado pode ser bvio, mas por vezes no , pelo que as alteraes cognitivas podem passar despercebidas ou consideradas erradamente. Nos doentes com um estado de conscincia obviamente normal no necessrio rastrear o seu nvel de conscincia, mas quando no assim necessrio avaliar esse nvel. Tambm nos doentes que tm alteraes cognitivas bvias, com agitao ou desorientao manifesta, no necessrio fazer qualquer rastreio, mas quando no assim h que faz-lo.

A comunicao um aspecto fundamental nos cuidados de sade e em cuidados paliativos este aspecto particularmente valorizado. A comunicao um processocontnuo, mas sobretudo nas fases de transio como a da admisso em cuidados paliativos, tem uma importncia particular porque a informao que os doentes e os familiares receberam anteriormente com frequncia insuficiente ou mesmo errada

sobre a finalidade desta nova fase do seu tratamento. natural tambm que os doentes

e os familiares desejem ser esclarecidos quanto ao que os espera.


Os cuidados paliativos envolvem os familiares que so afectados pelo sofrimento do seu doente, pelo que tambm so objecto de avaliao e ateno. No entanto, esse aspecto no ser integrado neste sistema que incidir exclusivamente sobre a avaliao dos doentes.

De acordo com o que anteriormente foi dito, o sistema que nos propomos construir desenvolver-se- em 5 captulos, para alm deste captulo introdutrio. No segundo captulo, da comunicao, procuraremos demonstrar a necessidade e o desejo de informao que a maioria dos doentes sentem e a dificuldade com muitas vezes se

deparam, atravs de dois estudos levados a cabo no IPO - Porto nos ltimos anos e j publicados. Procura-se mostrar a necessidade de adequar a informao aos desejos dos doentes e no usar princpios rgidos, procurando seguir a vontade e o ritmo destes. Depois, no terceiro captulo descreve-se o processo de avaliao da conscincia tanto ao nvel da viglia como do contedo. Para avaliar o nvel de viglia desenvolveu-se uma escala, entretanto j publicada. Para avaliar a funo cognitiva nos doentes com um nvel de viglia que permita interaco, introduziu-se um instrumento j em uso na Unidadede Cuidados Paliativos do IPO - Porto, que foi recentemente validado em cuidados paliativos e em portugus. Depois de definido se o doente tem capacidade para ser

avaliado ser usado o instrumento descrito no captulo 4 que foi desenvolvido segundoo mtodo de Delfos, com o envolvimento de peritos internacionais. Para os doentes que no podem ser avaliados directamente por alteraes cognitivas foram estudados dois mtodos que se descrevem no captulo 5. Finalmente no captulo 6 integram-se as diferentes partes do sistema, procurando dar-se uma viso de conjunto e coerncia interna a esta ferramenta. Procede-se ainda a uma reflexo sobre a importncia que

este sistema pode ter na melhoria da qualidade assistencial em cuidados paliativos.


http://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0001675&selTab=tab2 (acedido em 08/06/2009).

Geoffrey H. Palliative care: careless use of language undermines our identity. Palliat Med 2008; 22:109-110.

Ferraz Gonalves. Cuidados Paliativos em Oncologia. Arquivos de Medicina 1998; 12 (3):170-173.

WHO expert committee report. Cancer pain relief and palliative care. World Health Organization. Geneva 1990.

http://www.who.int/cancer/palliative/en/.(acedido em 28/05/2009).

Ferraz Gonalves, Goyanes C. Use of chemotherapy at the end of life in a Portuguese oncology center. Support Care Cancer 2008;16:321327.

Earle CC, Neville BA, Landrum MB, Ayanian JZ, Block SD, Weeks JC. Trends in the aggressiveness of cancer care near the end of life. J Clin Oncol 2004;22:315321.

1

2

3

4

5

6

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referncias

Temel JS, Greer JA, Muzikansky A, et al. Early Palliative Care for Patients with Metastatic NonSmall-Cell Lung Cancer. N Engl J Med 2010;363:733-742.

Ostgathe C, Alt-Epping B, Golla H, et al. Non-cancer patients in specialized palliative care in Germany: what are the problems? Palliat Med 2010;25:148-152.

Caraceni A, Cherny N, Fainsinger R, Kaasa S, Poulain P, Radbruch L, De Conno F, and the Steering Committeeof the EAPC Research Network. Pain Measurement Tools and Methods in Clinical Research in Palliative Care: Recommendations of an Expert Working Group of the European Association of Palliative Care. J Pain Symptom Manage 2002;23:239255.

Radbruch L, Strasser F, Elsner F, Ferraz Gonalves, Lge , Kaasa, Nauck, Stone P, the Research SteeringCommittee of the European Association for Palliative Care (EAPC). Fatigue in palliative care patients - an EAPC approach. Palliat Med 2008; 22: 1332.

Groenvold M, Petersen MA, Agronson NK, et al. The de-velopment of the EORTC QLQ-C15-PAL. Eur J Cancer2006;42:55-64.

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10

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2COMUNICAO


A comunicao um aspecto fundamental nas relaes humanas. Na relao dos doentes com os profissionais de sade a comunicao reveste-se de grande importncia e nos

cuidados paliativos -lhe dada tradicionalmente uma particular relevncia.

Demonstrou-se que a qualidade da comunicao tem um efeito positivo no bem-estar emocional e fsico dos doentes. A boa comunicao associa-se melhoria da satisfao e ao ajustamento psicolgico dos doentes. Para os doentes e suas famlias a comunicao uma componente vital da qualidade dos cuidados de fim de vida [1]. Contudo, as

atitudes relacionadas com a informao prestada aos doentes diferem muito de pas para pas e tem variado ao longo do tempo. Por exemplo, nos Estados Unidos da Amrica e nos pases do Norte da Europa a informao sobre vrios aspectos da doena habitual, enquanto nos pases do sul da Europa, nomeadamente em Portugal, a situao parece ser diferente. Invocam-se geralmente questes culturais para explicaressas diferenas e elas existem certamente. Mas h que dizer que a situao no esttica pois tem-se verificado uma evoluo no sentido de dar maior informao

aos doentes [3]. O maior acesso informao, a melhoria da literacia e o maior envolvimento em ensaios clnicos faro, certamente, com que os doentes venham a possuir e a exigir maior informao sobre a sua situao.

Na fase de transio para cuidados paliativos h certamente muitas dvidas e a consequente ansiedade associada. A transio para cuidados paliativos reveste-se de particular dramatismo pelo seu significado. Porque embora os cuidados paliativos

possam e devam ser integrados no tratamento dos doentes juntamente com as tcnicas curativas, na maioria dos casos ainda significam que a possibilidade de modificar a

comunicao/informao


evoluo da doena est esgotada. Este facto, tem naturalmente um grande impacto psicolgico nos doentes que deve ser explorado.

Embora haja a impresso de que em Portugal a informao prestada aos doentes deficiente, necessrio conhecer o que realmente se passa e quais so as preferncias

dos doentes quanto a este aspecto. da investigao por ns realizada nesta rea que

se d conta neste captulo, introduzindo dois artigos j publicados: Diagnosis disclosure in a Portuguese oncological centre - estudo sobre a prtica dos oncologistas de um centrooncolgico quanto informao que prestam aos doentes sobre o seu diagnstico; e Breaking bad news: experiences and preferences of advanced cancer patients at a Portuguese oncology centre - estudo sobre o ponto de vista dos doentes com cancro avanado sobre a informao que receberam. O captulo termina com uma breve snteses dos 2 artigos.


diagnosis disclosure in a portuguese oncological centre

j. ferraz gonalves, s. castroPalliative Medicine (2001); 15:35-41


21

Diagnosis disclosure in a Portuguese oncologicalcentreJ Ferraz Gonalves Director and S Castro Psychologist, Unidade de Cuidados Continuados, InstitutoPortugus de Oncologia, Porto

Abstract: The disclosure of a diagnosis of cancer to patients is a controversial matter.There have been major differences in practice concerning this issue through time andbetween cultures. A questionnaire was sent to the doctors of the Oporto Centre of thePortuguese Institute of Oncology in order to assess their attitudes. We received 45 responses (40%) from the 113 questionnaires sent. Of these, 32 (71%) said thatthey disclose the diagnosis as a general policy or at the patients request, and 13 (29%)disclose it rarely or not at all. The most frequent reason indicated by these 13 physicianswas that the disclosure might damage the patients psychologically. Forty-four (98%)doctors inform the family of the diagnosis. Thirty-nine (87%) think that patients aresatisfied with the information provided. This study was carried out in one oncologicalcentre only, so it is inappropriate to conclude that this is what happens throughoutPortugal. As far as we know, this is the first study in Portugal addressing this area ofpractice. This subject is a very important topic of research both in Portugal and in othercountries, as many published recommendations are not research based.

Key words: breaking bad news; communication; diagnosis disclosure; physicianpatientrelation

Resumo: A revelao do diagnstico aos doentes com cancro um assuntocontroverso. Tem havido grandes diferenas na prtica respeitante a esta questo aolongo do tempo e entre as diversas culturas. Envimos um questionrio aos mdicosdo Centro do Porto do Instituto Portugus de Oncologia para avaliar as suas atitudes.Recebemos 45 respostas (40%) dos 113 questionrios enviados. Destes, 32 (71%)dizem que revelam o diagnstico por princpio ou quando os doentes o pedem e 13(29%) revelam-no raramente ou nunca. A razo mais frequentemente indicada por estes13 mdicos foi a de que a revelao pode causar dano psicolgico aos doentes.Quarenta e quatro (98%) mdicos informam a famlia do diagnstico. Trinta e nove(87%) pensam que os doentes esto satisfeitos com a informao dada. Este estudofoi feito num nico centro oncolgico, por isso no podemos dizer que isto que sepassa, de um modo geral, em Portugal. Tanto quanto sabemos, este o primeiro estudorealizado em Portugal sobre este aspecto da prtica mdica. Este um tpico deinvestigao muito importante tanto em Portugal como noutros pases, porque muitasrecomendaes prticas publicadas no se baseiam na investigao.

Palavras-chave: dar ms notcias; comunicao; revelao do diagnstico; relaomdicodoente

Palliative Medicine 2001; 15: 3541

Arnold 2001 02692163(01)PM396OA

Address for correspondence: Dr J Ferraz Gonalves, Unidadede Cuidados Continuados, Instituto Portugus de Oncologia, R. Dr. Antnio Bernardino de Almeida, 4200-072 Porto,Portugal.

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Introduction

The disclosure of a diagnosis of cancer to patientsis a controversial matter. The dominant attitudeamong physicians has changed over time, and therehave always been voices advocating against it.1 Wewill also find different attitudes when we comparepractice in countries with different cultures. In theUnited States and northern European countries,24for example, the usual practice is to disclose thediagnosis. However, in other countries, includingthose of southern Europe,48 the situation is dif-ferent: doctors attitudes are more paternalistic, andin many cases they do not disclose the diagnosis.

In Portugal, the current practice seems to be oneof non-disclosure. However, as far as we know, noresearch on this subject has been carried out inPortugal.

Methods

We conducted a survey in the Oporto Centre of thePortuguese Institute of Oncology, which is one ofthe most important Portuguese oncological centres.It has 350 beds and about 4000 new patients areadmitted every year. It has services and equipmentequivalent to those of any major European oncolo-gical centre, including a palliative care unit. Thiscentre is a public hospital that serves the populationfrom the whole of northern Portugal. The patientsbelong to all social classes and education levels.

A questionnaire (see the Appendix), specificallydesigned for this study but not subjected to a pilottest, was sent to each doctor at the centre whotreated adult patients. Those with other functions,such as radiologists and pathologists, were exclu-ded. This study was approved by the Ethics Com-

mittee of the Portuguese Institute of Oncology Oporto Centre.

Results

The questionnaire was sent to 113 doctors, and45 responses (40%) were obtained. In Table 1 weshow the specialities and demographic data of thedoctors who returned the questionnaires. There isa similar percentage in all specialities, with the ex-ception of radiotherapy (Table 1). Nineteen (42%)participants added comments, clarifying their viewsor adding other hypotheses to those included in thequestionnaire. The questions most commented onwere: the one that asked if doctors disclose thediagnosis of cancer to the patients, and if not, whynot; and the questions about the patients andfamilies participation in therapeutic decisions.

Among our respondents, 14 (31%) doctors statedthat their policy was to disclose the diagnosis, three(7%) do not do it at all, 10 (22%) rarely do it and18 (40%) disclose it only at the patients request(Table 2). A much higher number, 44 (98%),inform the family about the patients diagnosis; inone case (2%) the answer was omitted. The mostfrequent reason indicated by the 13 doctors (34%),who rarely or never disclose the diagnosis topatients (Table 3), for so acting was the possibilityof damaging the patients psychologically (11, 85%).The comments added to the questions about thedisclosure to patients and the reasons for not dis-closing the cancer diagnosis, again, show a concernwith the eventual psychological damage that the dis-closure might produce. Some examples of thesecomments can be seen in Table 4.

To the question do your patients often requestmore information from you? 29 (64%) answered

36 J Ferraz Gonalves and S Castro

Table 1 Doctors speciality and demographic data

Speciality No. of questionnaires No. of questionnaires Total returned Returned per specialitysent returned (%) (%)

Surgery 52 22 49 42Medical oncology 24 12 27 50Radiotherapy 24 5 11 21Other 13 6 13 46Total 113 45 100

Age: mean 46 years (range: 3165 years); median 45 years.Sex: male 27 (60%); female 17 (38%); not stated 1 (2%).

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yes and 16 (36%) answered no. These 16 doctorspresume that their patients are satisfied with theinformation they get, or simply do not wish anymore information at all (Table 5). This agrees withthe answers to question 4, to which 39 (87%) saidthat they think their patients are satisfied with theinformation they give them.

Forty-one doctors (91%) think that patientsshould participate in decisions about treatment andfour (9%) think they should not. The reasons forthese opinions are shown in Tables 6 and 7. Only 25(56%) thought that family members should parti-cipate in making treatment decisions. The fewcomments about the patients participation in thera-peutic decisions suggest that they should not parti-cipate or even influence them. It was, however,conceded that if offered two equally effective treat-ments the patient can choose the one that is morebearable for him or her. Similar comments weremade about family participation in these decisions.One respondent stated that the decision belongs todoctors, and that family can be involved to encour-age the patient to accept the recommended treat-ment and to endure its toxicity.

Diagnosis disclosure in a Portuguese oncological centre 37

Table 2 Diagnosis disclosure to the patient

No. (%)

Yes 14 (31)No 3 (7)Rarely 10 (22) At patients request 18 (40)

Table 3 Reasons invoked for rare or non-disclosure (13doctors)

Reason Yes No

Difficulties in discussing the diagnosis 0 13Not prepared to deal with the situation 0 13Not useful to the patient 3 10Psychologically deleterious 11 2Not having enough time 2 11Others 4 9

Table 4 Examples of comments to questionnaire questions1 and 2

The decision to disclose the diagnosis should considerthe psychological, intellectual, cultural and socialconditions of the patient

It is necessary to inform the patients gradually and withsensitivity and gentleness, without coldness

After the information has been provided, psychologicalsupport is needed

Most patients are not prepared to receive theinformation of a malignant disease

The information must be given when it is useful to thepatient

The information can cause depression Never use the word cancer Patients often ask for information to feel hopeful in their

lives (we understand this statement means that thepatient does not really want the truth but a negativeanswer)

Table 5 Reasons to explain why patients often do not re-quest more information from their doctors (16 doctors)

They are satisfied with the information they havebeen given 7

They are not at ease to ask questions 1They do not wish for more information 5They feel you do not have enough time to talk to them 2They think they will not understand the information

you can give 0

Table 6 Reasons why patients should participate in treat-ment decisions (41 doctors)

To preserve patient autonomy 25To make the adherence to treatment easier 35To protect the doctor from legal problems 19To allow the patient to prepare himself for adverse

effects 30To allow the patient to refuse the treatment

eventually 23Other 4

Table 7 Reasons why patients should not participate intreatment decisions (four doctors)

It is difficult for you to discuss treatment withpatients 1

You think it is not useful to patients 2You do not have enough time to discuss treatment

with the patients 4The discussion might damage the patients

psychologically 1Other 1

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Discussion

This study was carried out in an oncological centre,where informing patients about their diagnoses is aneveryday matter.

We only had a 40% response rate, which is ratherlow although similar to that obtained in at least onevery important paper.2 This must be borne in mindwhen considering our findings. The reason why radio-therapists participated less than other specialists isnot clear.

The percentage of doctors (71%) who disclose thediagnosis of cancer as their general policy or whenrequested by patients is smaller than that found inother studies in which questionnaires were add-ressed to doctors,24 even some of those carried outin southern European countries.4 But the practiceof informing the family almost always (98%) is thesame as what usually happens in those countries.5

Doctors most frequently indicated the reason forrarely or never disclosing the diagnosis was that itmight damage the patients psychologically. It seemsthat those doctors prefer to protect the patientsfrom possible psychological damage rather than torespect their autonomy. A lack of training in dealingwith requests for information was not suggested asa reason for these responses. Doctors whose expe-rience is not to have frequent requests for informa-tion feel that this happens because the patients aresatisfied with the information they get or becausethey just do not want more information at all.Indeed, 87% think that patients are satisfied withthe information provided and this percentage ishigher than those who inform their patients as ageneral policy or when requested. The commentsalso show a concern for the patients protection:inform with sensitivity and gentleness; withoutcoldness; inform those we think have sufficient psy-chological and intellectual resources; the need forpsychological support; the information can causedepression; never use the word cancer. Again, adecision not to inform seems to be due not to a lackof training or difficulty in dealing with the situationbut to have its roots in a protective attitude to thepatients, in order not to affect them psychologicallyand may be understood as what they really want. Infact, in a study conducted in Spain,6 with a culturesimilar to that of Portugal, of the 68% of 97 patients

admitted to an oncological service and a palliativecare unit who had not been informed of their diag-nosis, 42% did not want to receive more infor-mation. An alternative explanation of our results is,perhaps an element of denial, because breaking badnews is recognized by most experts as being difficultand causing some degree of discomfort, even forexperienced professionals;9 in Portugal this problemis not addressed in any way, except in some limitededucational activity. It is possible that doctors arehiding their own difficulties in dealing with theseaspects of communication behind a paternalisticattitude. Communication with patients can belearned, but denial can delay or prevent the decisionto act accordingly. However, we must be very care-ful with the interpretation of the results obtainedand avoid preconceptions.

It seems to be a contradiction that 91% of thedoctors think that patients should participate intreatment decisions, because this percentage ishigher than those who inform patients, and withoutinformation about their disease it is not possible forpatients to decide rationally about the treatment.On the other hand, doctors think that family mem-bers, who are almost always informed, should parti-cipate in treatment decisions in a much smallerproportion of cases (56%). The comments aboutthe decisions also have a paternalistic characterwhen they state that patients should not decideabout treatment. However, these comments repre-sent a minority because 91% think that patientsshould participate in those decisions. The family isseen as a possible doctor ally, facilitating the ad-herence to treatment and helping the patient toendure the treatment decided on by the doctor.

The available data show that Portuguese doctors,who work in this oncological centre, disclose thediagnosis to patients less frequently than doctorsfrom other countries, including those of thesouthern Europe, such as Greece. This study wascarried out in one centre only so it is inappropriateto generalize, but the result obtained agrees with,or is even higher than, what we expected was hap-pening in Portugal.

This study reflects the way in which doctors seethemselves, not necessarily what happens, and ismore important, in our point of view, if the infor-mation is tailored to the desire of the individual


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patient. So, it is also very important to know whatPortuguese patients think about medical informa-tion issues, not only disclosure of the diagnosis butalso about the prognosis and their participation intherapeutic decisions. The research on these topicsis very important and is not extensive. Most of themedical literature providing practical advice is notresearch based.10

To explain the differences in attitude betweenthe countries in what concerns cancer diagnosisdisclosure, cultural causes have been indicated.However, perhaps these cannot explain, at leastcompletely, those differences, because if we go backto the 1950s and 1960s we find that in the USA mostdoctors used not to disclose a cancer diagnosis totheir patients, but nowadays almost all do so.2 Thereasons for this change are certainly many: thespread of information in the media about cancertreatment advances (real or not) and the treatmentoptions available in some cases, where the choiceonly depends on patients wish (for example, con-servative breast surgery); the spread of informationon patients rights and the growing demand forquality of medical services; the patients enrolmentin research protocols demanding informed consent;and legal matters that involve the medical pro-fession. These matters are progressively arising inPortugal and other countries, and we believe that,as time goes by, the picture concerning cancer diag-nosis disclosure will be similar to that already pre-sent in the USA and northern European countries.

References

1 Reiser SJ. Words as scalpels: transmitting evidencein the clinical dialogue. Ann Intern Med 1980; 92:83742.

2 Novack DH, Plumer R, Smith RL, Ochitill H,Morrow GR, Bennett JM. Changes in physiciansattitudes toward telling the cancer patient. J AmMed Assoc 1979; 241: 897900.

3 Loge JH, Kaasa S, Ekeberg , Falkum E, Hytten K.Attitudes toward informing the cancer patient asurvey of Norwegian physicians. Eur J Cancer 1996;32A: 134448.

4 Thomsen O, Wulff HR, Martin A, Singer PA.What do gastroenterologists in Europe tell cancerpatients? Lancet 1993; 341: 47376.

5 Mystakidou K, Liossi C, Viachos L, Papadimitrou J.Disclosure of diagnostic information to cancerpatients in Greece. Palliat Med 1996; 10: 195200.

6 Corts CC, Olarte JMN. Questioning diagnosisdisclosure in terminal cancer patients: a prospectivestudy evaluating patients responses. Palliat Med1994; 8: 3944.

7 Estap J, Palombo H, Hernndez E et al. Cancerdiagnosis disclosure in a Spanish hospital. AnnOncol 1992; 3: 45154.

8 Surbone A. Truth telling to the patient. J Am MedAssoc 1992; 268: 166162.

9 Buckman R. Communication in palliative care: apractical guide. In: Doyle D, Hanks GWC,MacDonald N eds. Oxford textbook of palliativemedicine, 2nd edn. Oxford: Oxford University Press,1998: 4761.

10 Ptacek JT, Eberhardt RL. Breaking bad news. J AmMed Assoc 1996; 276: 496502.


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Appendix

Diagnosis disclosure survey

Age: ............................................................................ Speciality: ....................................................................

Gender: ...................................................................... Service: ........................................................................

1. Do you disclose the diagnosis to cancer patients?

Yes No

Rarely At the patients request

2. If the answer was No or Rarely, indicate the reasons:

You find difficult to disclose the diagnosis

You were not prepared to deal with this information

You do not find useful to the patient to know that information

The disclosure might damage the patient psychologically

You do not have time enough

Other

Specify:

3. Do you disclose the diagnosis to the family of cancer patients?

Yes No

4. Do you think that your patients are satisfied with the information you give them?

Yes No 5. Do your patients often request more information from you?

Yes No

(if you answered Yes, go to question 7)

6. You think your patients do not request more information from you often, because:

They are satisfied with the information they have been given

They are not at ease to ask questions

They do not wish more information

They feel you do not have enough time to talk to them

They think they will not understand the information you can give

Other

Specify:


06PM396 9/1/01 3:28 pm Page 40


27

7. Do you think patients should participate in treatment decisions?

Yes No

If your answer is Yes, indicate the alternative(s):

To preserve the patients autonomy

To make easier the adherence to treatment

To protect the doctor from legal problems

To allow the patient to prepare himself to adverse effects

To allow the patient to refuse the treatment eventually

Other

Specify:

If you answered No, indicate the alternative(s):

It is difficult for you to discuss treatment with patients

You think it is not useful to patients

You do not have enough time to discuss treatment with the patients

The discussion might damage the patients psychologically

Other

Specify:

8. Do you think that the family should participate in the decisions concerning treatment?

Yes No


06PM396 9/1/01 3:28 pm Page 41


breaking bad news: experiences and preferences of advanced cancer patients at a portuguese oncology centre

ferraz gonalves, gata marques, snia rocha, pedro leito, teresa mesquita, susana moutinho

Palliative Medicine (2005); 19:526-531


Breaking bad news: experiences and preferences ofadvanced cancer patients at a Portuguese oncology centreFerraz Goncalves, Agata Marques, Sonia Rocha, Pedro Leitao, Teresa Mesquita and Susana MoutinhoPalliative Care Unit, Portuguese Institute of Oncology, Oporto

The disclosure of information to patients about diagnosis and prognosis and other aspects

of care is still a matter of debate. We have conducted a study in advanced cancer patients

about their experiences and preferences concerning this issue. A questionnaire was

developed and completed during the first appointment in the outpatient clinic of an

oncology centres palliative care unit, before the patient had any contact with the staff of the

unit. The study was conducted on a convenience sample of 47 patients. We found that

34 (72%) of those patients thought they had been informed of their diagnosis, most of them

by the hospital doctor. However, not all stated the diagnosis in a manner clearly showing

that they were aware of the nature of their disease. Most patients were with a family

member when the diagnosis was disclosed, which is what the majority had preferred. Of

the 13 uninformed patients, only one preferred to remain uninformed. Most patients (89%)

participated in decisions concerning treatment, although only 68% thought they should

have participated. Some 39 patients (83%) were informed that they were being referred to

the palliative care unit, but surprisingly only eight had received an explanation of the units

function. We concluded that, although most patients had been informed of their disease,

there remains many problems, the most important of which, in our view, is the difference

between the information provided and the patients needs.

A revelacao da informacao sobre o diagnostico o prognostico e outros aspectos dos

cuidados e ainda um assunto em debate. Realizamos um estudo em doentes com cancro

avancado sobre as suas experiencias e preferencias no que diz respeito a este tema. Foi

desenvolvido um questionario que foi aplicado na primeira consulta externa de uma unidade

de cuidados paliativos de um centro oncologico, antes de terem contacto com o pessoal da

unidade. O estudo foi realizado numa amostra de conveniencia de 47 doentes.

Constatamos que 34 (72%) desses doentes pensavam que tinham sido informados do

seu diagnostico, a maioria pelo medico do hospital. Contudo, nem todos nomearam o

diagnostico de um modo que mostrasse claramente que tinham nocao da natureza da

sua doenca. A maioria dos doentes estava com um familiar quando o diagnostico foi

revelado e era assim que a maior parte preferia. Dos 13 doentes nao informados so um

preferia manter-se sem informacao. A maior parte dos doentes (89%) participou nas

decisoes terapeuticas, embora so 68% pensasse que devia ter participado. Trinta e nove

doentes (83%) foram informados de que tinham sido referenciados para a unidade de

cuidados paliativos, mas surpreendentemente so oito tinham tido uma explicacao sobre a

funcao da unidade. Conclumos que embora a maioria dos doentes tenha sido informada da

sua doenca ha ainda muitos problemas, sendo o mais importante, do nosso ponto de vista,

a diferenca entre a informacao prestada e as necessidades dos doentes. Palliative

Medicine 2005; 19: 526/531

Key words: breaking bad news; cancer patients; cultural issues; information disclosure; palliativecare patients

Address for correspondence: Dr Ferraz Goncalves, Unidade deCuidados Continuados, Instituto Portugues de Oncologia, RuaDr Antonio Bernardino de Almeida, 4200-072 Porto, Portugal.E-mail: [email protected]

Palliative Medicine 2005; 19: 526/531

# 2005 Edward Arnold (Publishers) Ltd 10.1191/0269216305pm1070oa


Introduction

The information delivered to cancer patients is still a

matter of controversy, with wide cultural differences. In

northern European countries,1,2 and the US,3 most

doctors disclose the diagnosis as standard practice, but

in southern and eastern European countries,2,4,5 the

attitude is more paternalistic and patients are often

protected from such information. However, even in

those countries where the usual practice is now to

disclose the diagnosis, a few decades ago the attitude

was the opposite.3 This shows that the problem of

information can change with time.There are also differences between countries relative to

patients and families preferences for the type of infor-

mation they require. A study in a palliative care setting

comparing attitudes in Spain and Canada,6 concluded

that the majority of Canadian patients preferred to be

clearly informed, while the Spanish patients placed less

value on full disclosure. In the same study, family

members in Canada agreed with the detailed information

to patients, while in Spain 89% of family members

indicated that full disclosure was not important to the

patient.

A few years ago, we conducted a survey of doctors at

the Oporto Centre of the Portuguese Institute of

Oncology concerning the disclosure of diagnoses to

patients.7 In that study, 71% of doctors stated that they

always, or at the patients request, disclosed a cancer

diagnosis and most doctors who rarely or never disclosed

did not do so because they thought that the information

could be psychologically deleterious. However, uncer-

tainty can be worse than bad news,8 and some patients

assume that a non-threatening diagnosis would be

disclosed to them and the absence of such a disclosure

is taken to indicate that their condition must be serious.9

Non-disclosure isolates patients as it excludes them from

the discussion of problems that probably concern them

most. On the other hand, there is a minority of patients

who prefer to remain uninformed, and that must be

respected as that is the strategy they have evolved to

maintain hope. For those who lose hope of a cure or

longer life due to the disclosure, hope can be kept alive

through other aspects, such as their physician not

abandoning them, their remaining free from significant

suffering, being with their family and close friends and

having time to settle matters important to them.That survey reflected the view of doctors, which can be

very different to patients views. Therefore, the obvious

next step was to ask patients for their opinion concerning

the quantity and quality of information they receive from

health professionals and their preferences. Cultural issues

are relevant factors in the attitudes of doctors, patients

and their families in relation to the disclosure of

information. That is why it is important to add data

from different countries, and that is the reason providing

justification for this study.

Methods

A survey was conducted between January 2002 and June

2003 on a convenience sample of patients referred to the

outpatient clinic of our palliative care unit.10 This is a

palliative care unit included in an oncology centre;

therefore all patients had cancer as their primary

diagnosis. All patients were aged 15 or over, as youngerpatients are treated in the paediatric service.

A questionnaire was specifically designed for this study

to acquire the information considered relevant in an

exploratory survey. The aim of the survey was to obtain

patient preference regarding information and to compare

this with what actually occurs. The broad topics of the

questionnaire included: who should be informed first

when a life threatening disease like cancer is diagnosed;who should and who actually did convey the information;

where the information was and where it should have been

conveyed; who was and who should have been with the

patient; participation in the treatment decision-making

process; information provided on palliative care; and a

request to name the diagnosed disease.

Patients were addressed when they arrived for the first

time at the outpatient clinic, before they had any contactwith the health professionals of the unit. Psychology

students undergoing long-term training in the unit

presented the questionnaire to the patients.

Patients that were very frail, bedridden or suffering

cognitive failure, as assessed by the shortened version of

the Confusion Assessment Method,11 were excluded.

A descriptive study of all variables included in the

study was performed. Chi-square and Fishers exact testwere used to compare categorical variables with the

status of informed or not informed patients. Age and

follow-up time at the oncology centre, before admission

to the palliative care unit, were compared between

informed and uninformed patients using the Mann/Whitney U -test.

The ethics committee of the hospital approved this

study.

Results

The survey included 47 patients, 21 males (45%) and

26 females (55%); their median age was 66 years (range:

21/86 years); 39 were married (83%), six single (13%)and two widowed (4%). The median follow-up time at the

oncology centre before admission to the palliative care

unit was 16 months (range: 2/195).

Breaking bad news 527


All patients preferred the questions to be read aloud by

the psychology students instead of filling the question-

naires in themselves. Thirty-four patients (72%) statedthat they had been informed and 13 (28%) that they had

not been informed of their diagnosis.

Disclosure of the diagnosis

Twenty-six (55%) stated that patients should be the first

person to be informed, whereas 21 (45%) preferred afamily member or a friend. Most patients (41/87%)thought that the information should be disclosed by a

doctor and no one chose a nurse or a social worker.

Details regarding what actually occurred and the pre-

ferred options for diagnosis disclosure can be seen in

Table 1. Nineteen patients (56%) stated that they were

surprised with the information, while 15 (44%) suspected

the diagnosis. Most patients (68%) received the informa-tion at the outpatient clinic, only two received it in an

inpatient setting, three at home and one in another place;

the three patients who received the information at home

were among those informed by a family member, as

expected.

Most patients preferred to be with a family member

when the diagnosis was disclosed and this was what

actually occurred, but there were differences between thepreferred option and the actual experience (Table 2).

We did not find any correlation between information

and sex, marital status, age or the follow-up time at the

oncology centre before admission to the palliative care

unit.

Information and participation in treatment decision-

making process

Forty-two patients (89%) were always informed about

treatment and two sometimes; therefore only three (6%)

were never informed. Twenty-nine patients (62%) always

participated in decisions regarding treatment and two

participated sometimes; 15 (32%) never participated indecisions regarding treatment (one piece of data missing).

Only 32 (68%) thought they should participate in those

decisions, 23 (49%) thought that close family members

should participate, and 10 (21%) that only doctors should

take the decisions. Seven patients (15%) refused proposed

treatments.

Effectiveness of the information

For 19 patients (56%), the information was disclosedin an acceptable manner, clearly and sensitively, whereas

15 (44%) found the disclosure poorly carried out.

However, none of the latter commented further on why

they deemed it incorrect.

Only one of 13 uninformed patients preferred to

remain so. This group of patients was not informed

because they were not at ease to ask, the information was

refused, they felt they were tricked, the professionals triednot to answer the questions or the information was

unclear. On the other hand, five of the 34 informed

patients preferred that they had not been informed.

Therefore, only six of the 47 patients did not want to

know (Table 3).

The 34 informed patients stated they had one of the

following: cancer / 15 (44%); a tumour / 10 (29%); abad disease / one (3%); other / seven (21%); do notknow / one (3%). The 13 uninformed patients statedthey had one of the following: cancer / two (15%);tumour / 0; other / four (31%); do not know / seven(54%). If we consider all patients stating cancer,

tumour and bad disease to be informed and all

patients stating they do not know or other to be

uninformed then the results for informed patients are as

follows: 26 (76%) are really informed and eight (24%)are not informed, and for uninformed patients: two

(15%) are informed and 11 (85%) are not informed; the

Table 1 Who should communicate information about diag-nosis? Actual experience and preferred options of the 34informed patients

Actual experiencen (%)

Preferred optionn (%)

Family doctor 8 (24) 17 (50)Hospital doctor 19 (56) 10 (29)Any doctor / 3 (9)Psychologist 0 (0) 1 (3)Nurse 2 (6) 0 (0)Social worker 0 (0) 0 (0)Family member 4 (12) 0 (0)Other 1 (3) 3 (9)

Table 2 Actual experience and preferred option of the 34informed patients on who should be with them when thediagnosis is disclosed

Actual experiencen (%)*

Preferred optionn (%)

Family member 22 (65) 19 (61)Friend 2 (6) 0 (0)Alone 8 (24) 3 (10)Other professionals 8 (24) 1 (3)Other patients 0 (0) 1 (3)Indifferent / 7 (23)

*The sum of the actual experience items does not total 34 (or100%) because some patients were with more than oneperson.

Table 3 Information obtained and patients preferences

Patients preferences

To be informedn (%)

Not to be informedn (%)

Informed patients (n/34) 29 (85) 5 (15)Uninformed patients (n/13) 12 (92) 1 (8)Total (n/47) 41 (87) 6 (13)

528 F Goncalves et al.


difference between the two groups was significant

(PB/0.001) (Table 3).Regarding the referral to palliative care, 39 patients

(83%) were informed of the referral, but only eight

(17%) had received an explanation regarding the pallia-

tive care unit.

Discussion

The percentage of patients considering themselves to be

informed (72%) is similar to the percentage of doctors

(71%) that always, or at the patients request, disclosed

the diagnosis in a former study carried out at our

hospital.7 This number is higher than that observed ina Spanish study about ten years ago, where only 32%

of the patients with advanced cancer had been

informed of the nature of their disease.12 This is

surprising because Spanish culture is deemed to be

similar in many aspects to Portuguese culture. It seems

unlikely that the ten years separating these two studies

can explain the difference. Moreover, 42% of the

uninformed patients did not want to receive moreinformation,12 which again contrasts with our observa-

tion that only o

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