1

FACULTEIT GENEESKUNDE EN FARMACIE

Perceived tasks of the general practitioner

in palliative home care from diagnosis

onwards for patients with a chronic life-

limiting disease: a qualitative study with

general practitioners, community nurses

and patients.

Thesis neergelegd voor het behalen van de graad van

Master in de Geneeskunde

Academiejaar 2013 - 2014

Promotor: prof. dr. Lieve Van den Block

Co-promotor: Kim Beernaert

Vakgroep Huisartsengeneeskunde

Vrije Universiteit Brussel

Katrien Van Thienen

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Dankwoord

Bij het schrijven van deze thesis heb ik hulp en steun gekregen van verschillende mensen.

Vooreerst wil ik mijn promotor en copromotor, prof dr. Lieve Van den Block en Kim Beernaert,

bedanken om mij dit interessante onderwerp samen met de talrijke data aan te reiken. Ook ben ik hen

dankbaar voor de manier waarop zij mijn werk kritisch beoordeelden en steeds weer de tijd namen om

er samen met mij over te filosoferen. Dankzij onze verschillenden perspectieven heb ik een ruimer

inzicht gekregen in zowel palliatieve zorg als in wetenschappelijk onderzoek.

Verder wil ik ook Katleen en Hanne bedanken om mij te helpen met de bijzonderheden van de Engelse

taal.

Tenslotte uit ik speciale dank aan Johan, mijn grootste motivator en steun.

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Abstract

Background: Patients with a life-limiting disease may have palliative care needs which can be fulfilled

through palliative care (PC). For a long time, PC was considered to be applicable in the terminal phase

of life only, and usually provided by specialized health professionals. Nowadays, it is assumed to be

relevant in earlier stages of a disease and an important role is assigned to the general practitioner (GP).

However, the description of the GP’s roles and tasks in the provision of PC from diagnosis onwards

remains vague.

Aim: To explore views from GPs, community nurses and patients about the tasks of the GP in PC for

patients with a life-limiting disease and to explore differences in GP’s tasks during the disease trajectory

and differences for different life-limiting diseases.

Method: We used 18 interviews of patients with cancer, organ failure (chronic obstructive pulmonary

disease (COPD) or heart failure) or dementia and 6 focus groups (4 with GPs and 2 with community

nurses). Data were recorded, transcribed and thematically analysed.

Findings: We found four roles for GPs particularly relevant for PC and applicable throughout the

complete disease trajectory of the patient: 1) medical expert, 2) collaborator, 3) communicator and 4)

scholar committed to improve PC competencies. Important tasks were attributed to GPs at different

stages: (1) at diagnosis the FP i.a. needs to clarify the specialist's explanation about the disease and

treatments; (2) during treatment the GP should assess the patient’s body functions and medicine and use

these moments as an opportunity to check whether the patient needs additional care (psychosocial,

practical, existential) or whether the family needs support. GPs should also initiate conversations about

future care and preferences of patients (advanced care planning); (3) After exacerbations, the GP is to

check whether or not additional (home) care is needed; (4) In the terminal phase, the GP should inform

the patient and family about impending death. The collaboration with palliative home care teams can be

initiated by the GP. Comparing the perspectives of GPs, community nurses and patients, many views

were similar.

Conclusion: GPs, community nurses and patients have similar views on the GP’s tasks and roles in PC.

There are both unique tasks for certain moments in the disease trajectory and continuous tasks during

the complete trajectory. Our results could be used to generate a prototype overview showing the specific

and continuous tasks that GPs can fulfil during the disease trajectory. The competences needed to

provide PC are competences all physicians needs PC could be considered as part of the usual generalist

care instead of additional specialist care.

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Index

Dankwoord .............................................................................................................................................................. 2

Abstract ................................................................................................................................................................... 3

Index ....................................................................................................................................................................... 4

1. Introduction ..................................................................................................................................................... 5

2. Methodology ................................................................................................................................................. 10

3. Results ........................................................................................................................................................... 13

4. Discussion ..................................................................................................................................................... 30

5. Conclusion .................................................................................................................................................... 37

6. References ..................................................................................................................................................... 38

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1. Introduction

The challenges of palliative care

In developed countries all over the world, life expectancy has been and keeps on rising.1–3 The rise in

life expectancy is due to aging of the population. This aging of the population, however, entails a rise in

the number of patients suffering from a chronic life-limiting disease such as kidney failure, heart failure,

dementia, cancer et cetera4–6 According to the World Health Organization (WHO), patients suffering

from a chronic life-threatening disease are eligible to receive palliative care (PC).7 Moreover, it is stated

that PC should be the preferred approach for people suffering from a chronic life-limiting disease.8,9 The

combination of a rising number of patients suffering from a chronic life-limiting disease with PC as the

preferred approach for these patients, implies that there are many patients eligible to receive PC. PC

must be accessible for those who need it and feasible for those who provide it.

The WHO defined palliative care as

“an approach that improves the quality of life of patients and their families facing the problems

associated with life-threatening illnesses, through the prevention and relief of suffering by

means of early identification and impeccable assessment and treatment of pain and other

problems, physical, psychosocial and spiritual.”7

This means that PC should focus on three principles: symptom control, psychosocial care and disease

management. It also implies that patients suffering from any kind of life-limiting disease are eligible to

receive PC, however, it is currently mostly provided to patients suffering from cancer.10,11 Additionally,

PC should be provided from diagnosis of a life-limiting disease onwards, alongside disease-directed

medical care.12 In reality, however, PC is most often set up during the terminal phase of a life-limiting

disease, when no other treatment is helpful.12,13

Patients receiving general PC in the primary care setting have a greater chance of dying at home.14 Since

the majority of the patients suffering from a life-limiting disease prefer to stay and eventually die at

home,15–17 it is important that these patients receive general PC from diagnosis onwards. Several leading

authorities advise that PC preferably should be provided by the patient’s usual professional caregivers

in the primary care setting, such as the general practitioner (GP) and the community nurse; this is called

general palliative care.8,18,19

Organization of palliative care

The difference in general and specialist palliative care is, as suggested by the British National Council

for Palliative Care as follows: generalist PC is provided by the usual professional caregivers with low

to moderate complexity of PC needs; specialist PC consists of skills for managing more complex and

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difficult PC needs.13,20 The skills that should be

provided in primary and specialist PC are listed in

table 1. For primary care this means that generalist

palliative care is to be provided by GPs and other

health care workers usually working in the primary

care field, while specialist palliative care in primary

care is provided by specialist multidisciplinary

mobile palliative care teams. This difference is

explained in more detail here below.

Primary palliative care in Belgium

An epidemiological study based on records of a

sample of GPs estimated the number of patients

receiving palliative home care in Belgium between

8,000 and 13,000, while the total number of patients

eligible for PC was estimated between 10,000 and

20,000.21 Another study showed that in all non-

sudden deaths, GPs and nurses were involved in

respectively 76% and 78% of the cases.22 This

means that about the half of the patients eligible for

PC receives PC at home and that in approximately

¾ of all cases primary caregivers are involved.

Other patients may receive PC in nursing homes,

hospital settings and so further.

Specialist palliative care in Belgian home setting

Primary palliative care professionals (such as GPs,

community nurses…) might need additional and supporting expertise, which is provided by

multidisciplinary partnerships on request of the patient and in consultation with the concerned primary

care providers. These partnerships are called Specialist palliative home care teams (PHCTs) and consist

of a doctor, palliative experts (mainly nurses) and administrative employees.23

The hospital provides two types of specialist palliative care services. Firstly, selected hospitals supply

palliative care units (PCUs), which offer an intimate atmosphere and maximal comfort for patients and

their family who cannot receive palliative home care. Secondly, every hospital has a palliative support

team that supports palliative patients who do not stay in PCUs. Residential care centres have similar

palliative support teams. 21 The Belgian SENTI-MELC study (using data gathered by the Belgian

Table 1: Representative Skill Sets for Primary and

Specialist Palliative care

Generalist Palliative care

- Basic management of pain and symptoms

- Basic management of depression and anxiety

- Basic discussions about

Prognosis

Goals of treatment

Suffering

Code status

Specialist palliative care

- Management of refractory pain or other

symptoms

- Management of more complex depression,

anxiety, grief and existential distress

- Assistance with conflict resolution regarding

goals or methods of treatment

Within families

Between staff and families

Among treatment teams

- Assistance in addressing cases of near futility

Table copied from: Quill TE, Abernethy AP. Generalist plus

specialist palliative care - creating a more sustainable model.

N Engl J Med. 2013 Mar 28;368(13):1173–5.

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Sentinel Networks of GPs) showed that specialist palliative care services were provided in 41% of all

non-sudden deaths.22

GPs are willing to provide PC

According to the WHO, a multidisciplinary approach consisting of minimally a GP and a community

nurse is needed to provide good palliative home care.8 In guidelines for primary PC however, roles for

other disciplines are recommended as well, i.e. physiotherapists and social services. In this

multidisciplinary approach, the patient encounters some disciplines early in the disease trajectory and

others later on. The constant during the complete trajectory is the GP. In Belgium and many other

countries, the majority of the patients has an ongoing trust-based relationship with their GP after being

diagnosed with a life-limiting disease.8,18 This solid patient-GP relationship makes it easy for patients to

trust their GP as a lead in their care, which permits individualised care, since GPs have a holistic

knowledge of the patient and their family.24,25 Another reason why GPs are in a good position to be the

lead in PC is that the patient-GP relationship continues while the patient encounters several other

disciplines (specialists, community nurses, care facilities…).9,21 However, there are countries that do not

have a primary care system in which patients have a fixed GP.

According to previous research, patients and their relatives do consider the GP as the ideal key worker

in palliative home care. These researchers defined ‘key worker’ as “the person who coordinates care,

treatment and cooperation between all persons concerned in the disease trajectory”.26 Other research

done with GPs about their position and experiences in PC showed that GPs do consider PC as a part of

their job and that they are willing to collaborate with other professional caregivers to guarantee high

quality care.26,27 Similar research revealed that both GPs and patients want a supplementary share for the

GP in the follow-up of the patient’s chronic life-limiting disease on top of the specialist care that the

patient receives.28 This is inconsistent with other research showing that patients suffering from cancer

often stop seeing their GP when they are being treated by specialists.29 These and other studies also

showed that GPs experience improving working conditions if all the professional’s tasks and

responsibilities are well-defined.27 Another finding is that GPs attach a lot of importance to a good

relationship with both the patient and his/her family to whom they provide PC.30

Regularly, patients suffering from a chronic life-limiting disease need a community nurse to provide

care, psychosocial support and education.31–34 Community nurses visit the patient more frequently and

under usual circumstances in the patient’s home which results in an thorough patient-community nurse

relationship31. The patient-GP contact is different from the patient-community nurse contact because

appointments are often scheduled in both time (moment and duration) and content.35 This makes that

community nurses have an important impact on the palliative home care as well.

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Chronic life-limiting diseases and their end of life illness trajectory

Statistics from the WHO show that the main mortality causes of chronic diseases are cardiovascular

diseases, cancers, diabetes and chronic lung diseases.36 Chronic life-limiting diseases have different

illness trajectories that show by which course the patient’s body functions decline over time.9,37 Three

different illness trajectories in end-of-life care research are defined. The first trajectory is typically

reflected by patients suffering from cancer. These patients will be in a good health during a long time.

Their health will decline rapidly during a short period (weeks/months) and will be followed by a

predicted death. The second trajectory is typical for patients suffering from organ failure, such as chronic

obstructive pulmonary disease (COPD) or heart failure. These patients will experience a slow decline in

their health with an interruption during each serious illness exacerbation. After each exacerbation, the

patients will have a lower health status until the patient will not recover from an exacerbation and die

quite sudden and unexpected. The third course is typically reflected by patients suffering from dementia,

who lose their physical and mental health gradually over a long time and die without a clear alert.37,38

Who expects what from the GP?

It is shown that the demand for primary PC increases and that GPs are in the best position to occupy a

key role with other primary care workers as colleagues, particularly community nurses.26,27,39,40

Since GPs are willing to take on this role26,27, it is necessary to define its content in detail. Qualitative

research conducted about what terminally ill patients perceive as their GP’s role during terminal PC

showed that GPs should guarantee continuity, coordinate care, keep the focus on the big picture and

start conversations about advanced care planning (ACP) at the appropriate time.24,41 It is generally

accepted that PC should start from diagnosis onwards, the GP’s role in PC should thus be defined starting

from this moment and throughout the complete illness-trajectory. Since PC is mainly determined by

GPs, community nurses and the patient suffering from a life-limiting disease, it is interesting to find out

what these different parties expect from the GP. A well-defined role for the GP could help to convert

the often harsh and inadequate current situation into better PC for patients and into better working

conditions for professional caregivers throughout the complete trajectory of a patient suffering from a

life-limiting disease.

Purpose of the study

It is clear that GPs should have a leading role in the provision of PC9 and that GPs accept this role since

they are currently involved in approximately three quarters of all non-sudden deaths.22 However, to fulfil

this leading role, it is important to discover the precise tasks and roles of the GP in the provision of PC.

To our knowledge, no previous research has been conducted to discover the precise roles and tasks of

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the GP in the provision of PC for patients suffering from a chronic life-limiting disease, from diagnosis

onwards.

Given the important position of GPs and community nurses in the provision of palliative home care, this

study explores their opinions on the GP’s roles and tasks in PC from diagnosis onwards. PC is meant to

improve the patient’s quality of life during his/her disease trajectory, which is why the patient’s opinion

should be studied as well. Patients with any type of chronic life-limiting disease are eligible to receive

PC; this diversity should be reflected into the patient’s perspectives on the GP’s roles and tasks in PC

from diagnosis onwards. Because cancer, organ failure (COPD or heart failure) and dementia are

common chronic life-limiting diseases, the expectations of patients suffering from these diseases will be

reflected.

The purpose of this study is to explore the opinions about the roles and tasks of the GP in palliative

home care are, according to these three perspectives.

Research questions

1. What do GPs, community nurses and patients suffering from chronic life-limiting diseases

perceive as the GP’s task in palliative care of a patient with a chronic life-threatening disease?

2. Does the GP’s tasks differ between different chronic life-limiting diseases?

3. Does the GP’s tasks change during the disease trajectory?

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2. Methodology

Design

A qualitative design was used because its flexible and open approach allowed us to collect a rich and

in-depth understanding of the participants’ perceptions.42 Furthermore, given the complexity and

sensitivity of the discussed themes, we needed a research method that allowed us to explore underlying

thoughts, to clarify doubts and to elucidate questions and replies. An additional advantage of qualitative

research is that findings can be used immediately during the further course of the research.

The purpose of the study was to look into the views of the different perspectives. We chose that the best

way to obtain the views would be through focus groups and semi-structured face to face interviews.

Focus groups were used to obtain the views of the professionals (GPs and community nurses) because

of the following reasons: 1) in this way, professionals could interact and discuss their opinions. 2)

Researchers could get extra information from non-verbal cues and 3) information would be obtained

faster than if the professionals were interviewed separately.

Because it is not easy for patients to talk about their feelings with a stranger, we believed that a more

personal approach through semi-structured face to face interviews would be the best way to gain the

patient’s confidence. This confidence would be important for the patient to share his/her perception. We

also believe that face to face interviews maximize the quality of the collected data because of following

reasons: 1) Patient’s experiences are more private and most people feel more comfortable speaking one-

on-one. 2) Patient’s emotions could be sensed through non-verbal cues, which would allow for subtle

changes in the course of the interview if needed.

This thesis is part of a broader qualitative study performed by the promoters of this thesis. As Master

student I was involved in transcribing and analyses the data obtained. The researcher Kim Beernaert

was responsible for the execution of the interviews and focus groups.

Sampling and recruitment

Recruitment of GPs and community nurses

There was only one inclusion criteria for GPs and community nurses; namely to have working

experience with at least one patient with cancer, one patient with heart failure, one patient with COPD

and one patient with dementia during the past year.

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In Belgium, as part of the recertification process, each GP is required to be part of a peer review group

at least four times a year. Peer groups of GPs were informed about our research by letter and were asked

to let the focus groups take part during their peer review meeting.

We recruited practising community nurses and palliative care nurses through phone calls to several home

care nursing organizations and self-employed nurses.

Patient recruitment

The interviewed patients had to be older than 18 years and live at home, as well as being able, both

psychologically and physically, to conduct an oral interview. Additionally:

- Recruited patients suffering from cancer had to die most likely of the disease, in the short or the

long term.

- Patients suffering from COPD had to have a clinical diagnosis with a score of I to IV on the

Global Initiative for Chronic Obstructive Lung Disease (GOLD)-scale43.

- Patients suffering from heart failure had to have a clinical diagnosis with a score of II to IV on

the New York Heart Association (NYHA)-scale44.

- Patients suffering from dementia had to have a Mini Mental State Examination (MMSE)-score45

between 10 and 26, i.e. the clinical diagnosis of mild to moderate dementia and had to be capable

of doing an interview.

Several recruitment methods were used: 1) an announcement in a newsletter distributed among all

members (patients) of a national health care fund, 2) recommendation by hospital physicians and 3) by

participating palliative home care nurses

Patients were in- or excluded based on our inclusion criteria and after deliberation with Prof. MD. D.

Devroey, the head of the department family medicine at the Vrije Universiteit Brussel.

For each (sub) category, inclusion lasted until saturation of ideas was judged to have been reached.

Data collection

A semi-structured topic guide was developed and modified by the research group, with sub-questions to

elicit detail. The guide consists of an introduction which explains the purpose of the focus group or

interview and which makes clear to the participant they can interrupt the moderator if something is

unclear or when they wish to stop or leave the session. The topics in the guide are: 1) the

multidimensional care needs of patients suffering from a life-limiting disease from diagnosis onwards,

2) the GP’s tasks in solving these care needs, 3) why GP’s tasks are not completed and 4) what can GPs

improve to meet the patient’s care needs.

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After each session, participants (GPs, nurses and patients) were asked to fill in a short questionnaire

about their age, residence, sex… to obtain standard demographic and professional background

information.

Semi-structured face-to-face interviews with patients with cancer, dementia, COPD or heart failure were

organized at the patient’s home. Fourteen interviews were conducted with just the patient and the

researcher, the others were attended by the patient’s partner. Interviews took from 45 minutes to two

and a half hours and each interview was done by the executive researcher.

Data analysis

The obtained data was typewritten verbatim by the key researcher within a period of one week after the

focus group or interview. The field notes written during the focus groups were added in corresponding

places, to enrich the underlying meanings. The participant’s names were replaced by codes to guarantee

anonymity in agreement with local privacy law.

Subsequently, two researchers (executive researcher and thesis student) worked individually by the same

method to analyse the findings. The transcriptions were printed and read several times to get familiar

with the content. Afterwards the transcriptions were imported into Nvivo 10 (a software program for

qualitative data analyses) and analysed thematically.46

The researches started with analysing one interview and one focus group from each respondent type.

The data were openly coded with focus on “GP’s roles and tasks”, similar codes were clustered into

categories and discussed until the researchers reached agreement. A codebook was created and the

remaining transcripts were coded and inserted into this codebook, creating new codes if necessary and

combining others into more relevant categories. All transcripts were reviewed multiple times to ensure

that all relevant data was used.

Afterwards, the team of researchers compared their findings again and discussed them until agreeing on

all of them. After the coding, saturation was judged to have been reached and no further recruitment was

deemed necessary. Next, overarching themes were reasoned and interpreted. Similarities and differences

between the three participating perspectives were examined by making a table with three perspectives

plus the tasks and roles of the GP during palliative care. We looked for the most relevant quotations to

illustrate and support the found themes.

Ethical considerations

All the participants had to sign an informed consent approved by the Ethical Committee of the Brussels

University Hospital prior to the start of the focus group or interview.

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3. Results

We used data from six focus groups, two with community nurses (table 2) and four with GPs (table 3),

and from 18 interviews with patients (table 4).

Table 2. Characteristics of the focus groups conducted with community nurses.

Focus group n participants Female Average age (range)

FG nurses1 7 6 44,4 (36 – 53)

FG nurses2 5 3 43 (35 – 53)

Table 3. Characteristics of the focus groups conducted with general practitioners (GPs).

Focus group n participants Female Average age (range) Solo practice

FG GP1 6 1 54,2 (51 – 59) 3

FG GP2 3 2 49 (27 – 60) 0

FG GP3 6 3 54,8 (37 – 85) 4

FG GP4 5 1 49,2 (39 – 55) 3

Table 4. Characteristics of the interviewed patients.

Illness n of patients Female Average age (range) Years since diagnosis (range)

COPD 3 1 65,6 (48 – 77) 16,7 (4 – 38)

HF 3 1 71,3 (65 – 75) 10,3 (3 – 18)

Dementia 6 2 75,6 (67 – 86) 1,6 (1 – 3)

Cancer 6 3 61,8 (47 – 71) 3,7 (2 – 10)

During the analysis of our results, we observed that some perspectives on care tasks changed during the

different stages of a chronic life-limiting disease while others were applicable throughout the complete

disease trajectory. Tasks were categorized into five bigger “themes” or “stages”. The following stages

emerged: 1) around diagnosis, 2) during treatment, 3) around acute episodes or exacerbations, 4) during

the terminal phase and 5) throughout complete disease course. In this latter theme, we categorized the

identified tasks into overarching roles or competences (corresponding to the CanMeds Roles Framework

for physicians)47: 1) GP as a medical expert, 2) GP as a collaborator, 3) GP as a communicator and 4)

GP as a scholar.

Within the themes we looked for agreements and divergences in the views of the three participant

groups: GPs, community nurses and patients. Because it is impossible to discuss or use every quote, we

show which participant group stated which task/role in table 5. Behind the quotes used to support the

results, we show the cited participant’s characteristics in parentheses. The moderator’s quotations in the

used quotes are displayed in bold text.

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Table 5: Quoting of each discussed tasks/roles by each participant group.

Gen

eral

Pra

ctit

ion

ers

Co

mm

un

ity

nurs

es

Can

cer

pat

ien

ts

Org

an f

ailu

re p

atie

nts

Dem

enti

a p

atie

nts

1. Around diagnosis

task 1.a The GP is advised to clarify the diagnosis to patient. x x x x

1.b The GP is advised to discuss the implications of the

illness/treatments with the patient.

x x x x

1.c The GP is advised to discuss the patient's life expectancy. x x x

1.d The GP is advised to communicate the diagnosis ‘dementia’. x x x

no task 1.e The GP does not have to discuss specialized details concerning

the illness.

x x x

2. During treatment

task 2.a The GP is advised to monitor the patient’s parameters and

treatment.

x x x x x

2.b The GP is advised to refer the patient to specialists. x x x x x

2.c The GP is advised to discuss advanced care planning (ACP). x x x

no task 2.d The GP does not have to perform follow-up of the evolution

of the chronic life-limiting illness.

x x

2.e The GP does not have to perform specialist actions. x x x x

3. Around acute episodes or exacerbations

task 3.a The GP is advised to be available x x x x

3.b The GP is advised to instruct the patient about possible acute

situations.

x x x

3.c The GP is advised to re-evaluate the patient's medical and

home situation

x x x x

3.d The GP is advised to assist the close caregivers of dementia

patients and to treat acute situations.

x x

4. During terminal phase

task 4.a The GP is advised to inform the patient about impending death. x x

4.b The GP is advised to talk with the patient about his/her

concerns.

x x

4.c The GP is advised to know the patient's preferences

concerning ACP.

x x x x

4.d The GP is advised to take care of EoL-acts. x x x

4.e The GP is advised to provide time for a patient in the terminal

phase.

x x

4.f The GP is advised to cooperate with community nurses and

PHCTs.

x x x x x

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4.g The GP is advised to provide comfort care. x x x x

no task 4.h The GP is advised to provide terminal care himself. x x

5. During complete trajectory

5.a GP as a medical expert

task 5.a The GP is advised to treat somatic symptoms. x x x x x

5.b The GP is advised to supervise used medication. x x x x x

5.b GP as a collaborator

task 5.c The GP is advised to collaborate with primary healthcare

professionals.

x x x x x

5.d The GP is advised to discuss patient cases with specialists. x x x x

5.e The GP is advised to instruct community nurses. x x

5.f The GP is advised to inform the community nurse about the

patient’s condition.

x

5.g The GP is advised to communicate through a notebook at the

patient's place.

x x x x

5.h The GP is advised to attend multidisciplinary meetings. x x

5.i The GP is advised to collaborate with the patient's informal

caregivers.

x x

5.j The GP is advised to fulfil paperwork. x x x x x

5.k The GP is advised to refer the patient to the correct facility. x x

no task 5.l The GP does not have to organize multidisciplinary meetings. x x

5.m The GP does not have to work alone. x x x x x

5.c GP as a communicator

task 5.n The GP is advised to show empathy for the patient. x x x x x

5.o The GP is advised to discuss the patient’s emotions. x x x x

5.p The GP is advised to provide psychological support. x x x x x

5.q The GP is advised to communicate in an honest and focussed

way.

x x

5.r The GP is advised to check on patient’s moral. x x x x x

5.s The GP is advised to be encouraging about the patient's illness

trajectory.

x x x

5.d GP as a scholar

task 5.t The GP is advised to stay informed about PC and life-limiting

diseases.

x x

1. Around diagnosis: informing and reassuring

Both patient groups suffering from cancer and organ failure agreed that after the specialist initially

communicated the diagnosis, the GP should clarify and discuss the implications of the illness to the

patient if needed. GPs and community nurses share this point of view. GPs agree by providing more

time for the patient.

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GP “dat [wanneer] ze thuis komen en nog overrompeld zijn door de diagnose, waar dat het eigenlijk

niet goed doordringt van 'wat heeft de specialist nu allemaal meegegeven?" en dat ze dan bij

ons terecht komen van "legt dat nu es goed uit, "nu kan ik me focussen op" van "wat heb ik nu?",

"hoe lang heb ik nog?", "wat gade er aan doen?". Ik denk dat dat de moment is om dan, ja, op

de vragen te gaan inspelen en wat tijd voor uit te rekken.” (FG GP1, 45y, m, solo)

GPs agree that in the case of dementia, the stage of the disease determines how patients cope with the

diagnosis. Some patients in an early stage find themselves becoming forgetful and find it the GP’s task

to diagnose dementia. Community nurses noticed that suffering from dementia is still a taboo compared

to suffering from cancer, COPD or heart failure. Some patients, or their informal caregivers, try to hide

the patient’s forgetfulness and herewith the possible diagnosis of dementia. GPs and community nurses

agree that when it is up to the GP to notice that a patient might suffer from dementia, the disease is often

in such an advanced stage that the patient does not realize the impact of the illness anymore. Community

nurses and GPs agree that it is the GP’s task to mention the diagnosis dementia and to refer the patient

to a specialist for additional testing and treatment. One patient suffering from dementia mentioned that

he finds it the GP’s task to be alert for symptoms like forgetfulness.

GP “Daar [in an early stage of dementia] is het misschien nog wel te doen [diagnose stellen], omdat

die patiënt zelf ook da wel wilt. Dan hebt ge een groep van mensen die dementeren, maar die

dat niet beseffen. Dan is ‘t niet simpel om die mensen dan in een onderzoek te krijgen en dat is

veel moeilijker. Dat is veel moeilijker, om die te overtuigen om te laten onderzoeken.” (FG GP3,

54y, m, group)

CN “K: Wat is het verschil dan met dementie en die andere? Beetje meer taboe zeker, minder fysiek

hé, die fysieke noden zijn altijd gemakkelijker om mee naar de dokter te stappen dan zo die

emotionele en andere dingen he.” (FG nurses1, 36y, f)

P “Die zouden er eens voor moeten zorgen dat als ze iets merken in dat gebied, dat ze zeggen “O

o, here rings the bell he.” Maar ‘k denk niet dat de meesten zich daar ge…” (patient suffering

from dementia, 75y, m)

2. During treatment and follow-up.

All three perspectives think that the GP has a specific share in the patient’s follow-up during treatment.

Patients suffering from different illnesses showed different needs during follow-up. Patients suffering

from cancer stated that they find it a task of their GP to communicate test results and discuss decisions

concerning treatment. Patients suffering from organ failure expect regular physical examinations and

follow-up of the habitual treatment. Patients suffering from dementia stated that the follow-up of the

illness is a task of the treating specialist, not of the GP. They find it the GP’s task to survey the prescribed

medicine.

17

P “en dan medicatie. Maar van een huisarts verwacht ik dus niks anders.” (patient suffering from

dementia, 75y, m)

GPs and community nurses also find it a task of the GP to provide close follow-up of the patient’s life-

limiting illness. They state that GPs should do this by means of regular physical examinations and survey

of the used medicine. GPs and community nurses also think that the GP should monitor and

communicate the disease progression by means of test results and specialist’s reports.

P “K: Wat vind je dat de taak van de huisarts is nu, sinds de diagnose, da kan veranderen natuurlijk. L:

Hetgeen dat hij nu doet he. Dus zolang ik geen problemen heb, de nodige opvolging doen, kwestie van da

bloed naar hier ne keer komen. Want als hij bloed getrokken heeft, ‘s avonds mag ik dan bellen naar hem

voor de resultaten.” (patient suffering from bowel cancer, 61y, m)

Patients indicated that follow-up of the chronic life- limiting disease itself is not a task of the GP. GPs

and community nurses did not give statements about this. Community nurses and patients think it is not

the GP’s task to perform specific actions concerning the life-limiting disease itself. For community

nurses these actions concern nursing skills. For patients these actions concern curing the life-limiting

illness or perform specialist actions such as defibrillation.

P “’t is de specialist die beslist welke behandeling je krijgt he, dus dat is niet, dat is niet het domein

van de huisarts in feite he” (patient suffering from lung and kidney cancer, 64y, m)

P “K: heeft uw huisarts eens dat hij uw problemen kende deze ook opgelost? (stilte). Nee. Maar hij kan

dat toch niet oplossen? Dit kan hij niet oplossen? COPD als je daar last van krijgt, als je daar krijg

symptomen van krijgt, is het al veel te laat he. Alle dat heb ik toch zelf ontdekt. Nee, maar niemand heeft

daar, alle, de klinieken hebben daar ook geen oplossing voor he. Het enigste wat die maar kunnen doen

is zorgen dat het stabiel blijft he.” (Patiënt suffering from COPD, 48y, m)

P “Ik weet dat zij (GP) het allemaal opvolgt en dat zij het allemaal tot een goed einde gebracht heeft. Nu

er zijn ook problemen die zij niet kan oplossen, die dan verder van de specialisten komt. Want zij kan niet

defibrilleren.” (patiënt suffering from heart failure, 75y, f)

Certain GPs (not all) and patients suffering from cancer or organ failure believe that GPs should discuss

advanced care planning (ACP) early in the disease trajectory, anyhow, before the start of the terminal

phase. GPs mentioned that introducing ACP early in the disease trajectory is not easy because of the

association with death and possible loss of hope.

GP “Ja daar wordt over het sterven dikwijls pas heel laat gesproken. Terwijl ge het eigenlijk zou

moeten bespreken… allez ik zou zeggen, in tempo in ons gesprek toen, dan eigenlijk al euh,

weten wat ze willen, en hoe ze willen sterven, waar ze willen sterven, wat ze daar rond doen,

18

angsten rond het sterven. Dat eigenlijk in een vroeg stadium bespreken.“ (FG GP1, 51y, m,

solo)

GPs think that they also should discuss ACP with patients suffering from dementia. In reality however,

GPs state that they rarely do this because they find it hard to determine the suited moment while the

patient is still mentally competent. GPs also find it hard to estimate the pace of disease progression and

the shift from mental competency to incompetency. There was no patient suffering from dementia that

we interviewed stating the need for discussing ACP with his/her GP.

GP “Misschien rond dementie ook van op tijd met de mensen te bespreken hoe wilde gij behandeld

worden als ge zelf niet meer beslissingsbekwaam zijt . Dat moet je ook ergens bepalen op heldere

momenten en aanpraten v in an Hoe wilde gij op 't einde behandeld worden? En dat ziede ook

niet altijd aankomen wanneer dat ge daar een goeie tijdstip voor ...” (FG GP3, 45y, m, solo)

3. At the time of acute episodes or exacerbations

An important task of the GP, according to GPs, community nurses and patients suffering from cancer or

organ failure, is being available if the life-limiting illness decompensates. This can be an exacerbation

of the illness or an acute complication during life-prolonging treatment or in the terminal phase. Being

available includes unplanned contact with the community nurse, home visits or consultations,

adjustment of the treatment or referral to the patient’s specialist if necessary.

P “De huisarts ziet u meer in crisissituatie, er komt geen specialist thuis hé. Dus die kan zich toch

misschien meer rekenschap geven van de impact van die pijn, maar de specialist niet“ (Patient

suffering from lung cancer, 71y, f)

P “Ik ben eens echt onwel geworden. Mijn buurvrouw is die [de huisarts] gaan halen. […] Ze

heeft me dan een spuitje gegeven. Ze heeft toen gezegd, hou u rustig, blijf liggen. Dan is ze ‘s

avonds, ze moest haar consultaties doen, ze heeft gezegd, ik kom vanavond een keer. En ze is

ook teruggekomen. Efkes komen kijken hoe het was. Alles was goed.” (patient suffering from

COPD, 42y, m)

GPs and patients suffering from cancer or organ failure also find it a task of the GP to give clear

instructions to patients beforehand. They think this is important to recognize insidious exacerbations in

an early stage, facilitating early treatment and avoiding complications. In the case of dementia, GPs and

community nurses experience acute psychiatric problems such as aggression and runaway behaviour.

They think that GPs can solve or avoid these problems by means of medication or referral and that GPs

should assist the patient’s close caregivers.

GP “Dat [zorgen dat patiënt situatie serieus neemt] is een kwestie van hele goeie instructies geven,

bijvoorbeeld bij hartfalen dan “kom je twee kilo bij? Moet je langskomen, niet wachten tot je

19

geen lucht meer krijgt”. Dus dat is een manier om dat wel op tijd te weten. Goeie instructies

geven, eventueel door verpleegkundigen te laten opvolgen en hen goede instructies geven.” (FG

GP2, 27y, f, group)

CN Aangezien die medicatie niet op punt staat, hij kreeg te weinig hé, […] maar natuurlijk zijn

gedrag was weer toen niet meer toonbaar, en ik heb dan ook gezegd tegen die vrouw van het is

toch beter van hem meer te sederen dat het ook haalbaarder is, je gaat ook rustiger zijn en

eventueel komen we een keer meer op een dag dan langs he…” (FG nurses1, 38y, f)

After recovery, the patient might need a different treatment, extra practical assistance or closer follow-

up. A community nurse noted that patients in Belgium nowadays get a hospitalisation report at the

moment of resignation. She thinks the patient should contact the GP and that it is the GP’s task to ensure

that the patient has prescriptions for the correct medication, home care, practical aid etc.

CN “Nu krijgen ze [patiënten, bij ontslag] wel een brief mee voor de huisarts en moeten ze eigenlijk

de huisarts bellen, denk dat misschien daardoor gekomen is dat de mensen komen thuis, ze

hebben maar pilletjes voor twee dagen en de huisarts moet komen om voor te schrijven, dus

denk wel dat die schakel proberen te maken is vanuit de kliniek, maar ik heb toch nog veel

mensen die als ze dan geen specifieke medicatie moeten hebben niet direct gaan bellen naar de

huisarts, van ik ben thuis van de kliniek, ga je komen?” (FG nurses1, 53y, f)

4. During the terminal phase

The terminal phase of life can be defined as the final phase of life before the patient will actually die,

starting usually a few hours, days or weeks before death. In order to facilitate a clear view on the results,

we allocated them into the following categories: 4.a) transitioning to the final phase of life, 4.b)

availability of the GP: a dying patient takes time, 4.c) initializing specialist palliative home care teams

and 4.d) dying comfortably: patients count on their GP.

4.a Transitioning to the final phase of life

GPs, community nurses and patients suffering from cancer or organ failure agree that this transition to

a terminal phase is associated with psychological and existential care that the GP should provide. GPs

and community nurses find this transition clear when the treating specialist stops all life-prolonging

treatments. In case of therapeutic tenacity, it is hard for the GP to identify, let alone, discuss this

transition. GPs noticed that if the terminal phase starts for a patient suffering from cancer, death often

comes faster compared to patients suffering from organ failure. In the case of dementia, GPs find the

shift to the terminal phase unclear.

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There are GPs who agree that providing psychological and existential care is their task. However, there

are other GPs who believe this is not their task and that these tasks can be delegated to other professionals

such as PHCTs, psychologists… GPs think that it is sometimes emotionally too hard for patients to be

confronted with impending death. This makes the GP concerned that the patient might give up or be

depressed during the last phase of his/her life.

GP “En er komt een bepaalde moment, dat vind ik zelf altijd een heel belangrijk moment, dat je met

patiënten de koers moet gaan overleggen, dat je moet gaan zeggen: ‘u heeft nu dit gedaan, dat

gedaan, we moeten concluderen. Er zijn eigenlijk nu geen behandelingsopties meer, laten we

ons nu gaan voorbereiden op het laatste stuk van uw leven, he, want het moment komt daar dat

u afscheid moet gaan nemen van het leven’.” (GP FG1, 52y, f)

GP “Pastoren die zijn er niet meer (lacht). Dus dan moet je het zelf zijn. Moet je psycholoog of

gelijk wie of iemand dus van het centrum van … sterfbegeleiding ofzo doen. Maar dat vind ik,

dat is de taak nu meer en meer van de huisarts, dat die zorgnoden hé, dus die er zijn dat dat die

eigenlijk erkent worden door de huisarts en dat die kunnen gedelegeerd worden door iemand

dus die daar voor bevoegd is. K: zou je dat liever, ik zeg maar, een psycholoog sturen naar die

patiënt om daar dan over te praten? M: of iemand, of gelijk wie, maar je kunt niet alles als

huisarts naar de toekomst kun je niet alles zelf doen. Je moet dus mensen dus die bevoegd of

die…” (FG GP2, 60y, m, group)

The psychological tasks that the GP should fulfil during the terminal phase of life are very important

according to the community nurses. They find it a task of the GP to give psychosocial and existential

care to the patient and his/her family. One community nurse noted that existential needs can be age-

related. She noticed that older patients appear more accepting towards death while younger patients are

more scared to leave behind their partner, children, family and so on. Community nurses think that GPs,

despite the emotionally harshness, should discuss the transition from curative to terminal care.

CN “Ik vind die noden ook een beetje leeftijdgebonden '...' oudere mensen, zeker, ik heb mijn leven

gehad, ik heb kinderen en kleinkinderen en mijn tijd is gekomen terwijl jongere mensen die nog

eigenlijk vol uitdagingen voor zich dat die heel andere noden hebben in de zorg vind ik.” (FG

nurses1, 36y, f)

Community nurses experience that patients who sense death is near and do not get answers from their

GP, expect answers from the community nurse. Community nurses find themselves not suitable to

discuss medical information with the patient. This causes conflicts between the community nurse and

the patient and his/her family. Community nurses find these conflicts unacceptable and think that GPs

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can avoid them through clear communication with the patient and his/her family about the prospects.

Community nurse also find it a task of the GP to inform the community nurse about the patient’s terminal

phase to guarantee that community nurses approach the patient with suitable sensitivity.

CN “Er was een terminale patiënt en ze heeft nog een tiental dagen geleefd en ze zij altijd maar ik

ga dood. Wat heb ik en niemand zegt mij iets? Wij hebben gewoon teruggespeeld op de huisarts,

hebben we eigenlijk gecontacteerd, gebeld, als we zagen dat de auto er stond, als we passeren,

stoppen, binnengaan, contact met die dokter en die patiënt. Dat gaan aankaarten. En wij zeggen

van ze vraagt het of ze gaat doodgaan. Ga er op in spreek erover. En als dat niet gedaan wordt

en als je dat 4 of 5 keer moet herhalen. Plotseling op een gegeven moment staat er een dochter

bij en zoon en zegt ze van kijk nu ga ik het vragen aan de verpleger wat heb ik en ga ik doodgaan.

Waar sta je dan, wat moet je daar mee doen?” (FG nurses2, 35y, m)

4.b Availability of the GP: a dying patient takes time.

According to GPs, community nurses and patients suffering from cancer it can be very time-consuming

for GPs to treat and guide terminal patients and their family. Community nurses find it the GP’s task to

provide sufficient time irrespective the regular working hours. GPs agree that it is their task to provide

time. GPs notice that these moments usually take place after the GP’s regular working hours when office

phones are unavailable. This is why GPs give patients their hand phone number. Some GPs do not mind

this extra time consumption because they rarely have several patients in the terminal phase at the same

time. Other GPs find this extra time consumption not practicable and enable palliative home care teams

(PHCTs) to ensure that the patient and his/her family receive the appropriate care.

GP “Ik denk dat als ge iemand palliatieve zorg aanbiedt, dan moet je er ook wel tijd voor hebben,

tijd voor maken. Ik zie zelf dat palliatieve mensen vaak niet meteen in je legitieme uren zitten.

Soms wel, maar soms ook buiten die uren. Heel vroeg ga je even langs, ‘s avonds ga je even

langs.” (FG GP1, 52y, f, group)

4.c Initialising specialist palliative home care teams

All categories agree that it is a task of the GP to co-operate with the other professional caregivers who

provide terminal palliative care to the patient, particularly community nurses and PHCTs. There are GPs

who enable PHCTs to provide physical, psychosocial and spiritual care as soon as they feel that they

cannot provide sufficient terminal care because of limited availability or emotional barriers as discussed

before. There are other GPs that only consult PHCTs to get suggestions about the usage and acquirement

of practical and medical sources. GPs who only consult PCHTs find it the GP’s task to guide the patient

to a maximal degree, until death. Community nurses find it a task of the GP to enable PCHTs or delegate

tasks to community nurses if the GP cannot provide terminal care him/herself.

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GP “Is het ook, jullie taak dan om tijdig door te verwijzen naar palliatieve zorg?

GPa: Palliatieve zorg is een taak van onszelf.

GPb: Ik vind dat een foutieve stelling hoor, wat u daar zegt. “Palliatieve zorg dat zijn wij? [...]

Palliatieve zorg is niet iets dat buiten ons werk staat, dat is ons werk. [...] Ja goed dan [als

patiënt moeilijke dingen verlangt] vraag je technische uitleg maar uiteindelijk de regie en wat

er allemaal gebeurt dat is ons werk..” (FG GP1, 51y, m, solo + 62y, m, solo)

CN “CNa: Het is de nood van een patiënt he. Je moet er iets mee doen he. Ofwel Palliatieve

inlichten, of alle, er bestaan dingen genoeg.

CNb: Ze [huisartsen] moeten ook zeggen van wat stel je voor, wat kunnen we doen? Dan kun je

samenwerken. Het is niet evident he voor een huisarts om dat alleen op te lossen.” (FG nurses2,

38y, f + 52y, m)

In case of patients suffering from dementia, GPs noticed that most of the time they only enable PHCTs

if the patient suffers from a second life-limiting disease such as cancer. Patients suffering from dementia

themselves accept PHCTs, one patient in the terminal phase said that his GPs enabled a PCHT on request

of his family. Although it was remarkable that this patient never used the term ‘palliative’.

GP Nu je zei zo een dementiepatient bij palliatieve zorg betrekken dat bijvoorbeeld wel als daar

orgaanfalen bijkomt?

Y: Ja, of kanker. Dat is het eerste, de kankerdiagnose ofja. Dat is prioriteit. Als die

achteruitgaat. (FG GP3, 53y, f, solo)

P “Is er ook voor u psychologische begeleiding? M: Ja zeker. Mijn psychologische begeleiding

door mama. Het is dat dat je bedoelt? Ja. Of door iemand anders. M: Morgen komt er iemand

voor Omega (PHCT). Dat ken je waarschijnlijk he. Ja. M: Omdat de dokters, mijn zoon o.a. en

de andere huisdokter, die vonden dat het tijd geworden was van Omega te laten komen.” (patiënt

suffering from dementia, 86y, m)

4.d Dying comfortably: patients count on their GP

GPs, community nurses and patients suffering from cancer or organ failure think it is very important

that the patient feels comfortable during the terminal phase, free from burdensome symptoms such as

pain, dyspnoea and nausea. Patients count on their GP to provide comfort care. Several patients suffering

from cancer or organ failure discussed and/or arranged these and other aspects of ACP with their GP.

None of the patients suffering from dementia that we interviewed, mentioned that he/she ever discussed

preferences or wishes for end of life decisions with his/her GP.

Patients who decided that they wish to receive euthanasia or palliative sedation in the end, expected their

GP to take care of this. No patient stated explicitly that he/she expects the GP to perform these acts.

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Some GPs find it their task to perform these acts themselves, others prefer to outsource the acts to other

GPs or PHCTs.

GP “Ik heb ook vaak heel erg de indruk dat de patiënten heel erg graag weten dat als het een

moment totaal fataal afloopt dat ze dan kunnen rekenen op … heel goede zorg. Heel expliciete

euthanasiepatiënten, dat ze dat nog gaan krijgen, dat ze allemaal die zekerheden nog wel hebben

van, hoe mag het voor mij aflopen, ik wil hier weten wat dat doet voor mij.” (FG GP4, 47y, m,

solo)

P “Ja ik denk dat wel dat zoals je zegt, dat je daar zou vallen en een hechting en ge ligt daar …

Dan zou ik liever doen gelijk dat ze euthanasie zouden toepassen. […] Zijn dat dat ook dingen

waar dat je met mensen over praat of is dat iets dat je eigenlijk eens voor jezelf bedacht hebt.

Nee daar hebben wij al over gepraat, over dat, zowel bij mij als van haar [huisarts] kant. En

ons gasten die weten dat wat ze moeten doen.”(Patiënt suffering from heart failure, 65y, m)

5. Throughout the whole disease trajectory

Firstly, results about general differences between the three disease trajectories will be described.

GPs and community nurses noticed that PC is provided differently to each patient category. They

experienced that signs of patients suffering from cancer are taken more seriously. Probably because GPs

find the diagnosis ‘cancer’ more confronting with death than other diagnoses.

In case of organ failure, GPs and community nurses noticed that symptoms are sometimes discarded as

signs of aging instead of disease signs. Another finding is that disease progress is much slower compared

to cancer. A finding in case of dementia is that the needs of these patients were the easiest to become

neglected because of the psychological instead of physical nature of suffering.

CN “Voor de patiënt met COPD hartfalen eh, dat dat meer zo wordt afgedankt als een

ouderdomskwaaltje zo, ja, dat is de oude dag dat komt niet alleen, eh '...' ja, terwijl kanker,

dementie, daar wordt daar weer andere aandacht aan gegeven. K: Andere aandacht?

Ja, euhm, ik denk soms dat een patiënt met een, een kanker eh, dikwijls in zijn klachten meer au

serieux wordt genomen bijvoorbeeld of dat er meer aandacht aan wordt geschonken dan een

COPD of patiënt met hartfalen, denk ik.” (FG nurses1, 36y, f)

CN “Ik denk dat, het is COPD ook zeker he? Wat dat eigenlijk ook wel sterk aanleunt bij palliatieve

patiënten, waar die patiënt eigenlijk respiratoir, eigenlijk ook enorm afziet, euh ik zeg niet, een

palliatieve patiënt weet dat het, maar COPD-patiënt heeft ook zeer slechte prognose, dus die

twee leunen meer bij mekaar aan dan de patiënten bij Alzheimer.” (FG nurses1, 51y, f)

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We found statements about tasks of the GP which return during several stages of the patient’s disease

trajectory. We converted these tasks into roles and associated them with qualities that a GP should have

when providing palliative care. Because of the focus of this study the list is inconclusive for the overall

qualities a GP should have. The qualities we found are: 5.a) GP as a medical expert, 5.b) GP as a

collaborator, 5.c) GP as a communicator and 5.d) GP as a scholar.

5.a GP as a medical expert: best medical care for the patient

GPs, community nurses and patients suffering from cancer or organ failure think that it is a task of the

GP to treat the somatic symptoms which patients suffering from life-limiting disease can have, supervise

the patient’s used treatment and have knowledge about the possible adverse effects and interactions of

the used medicine. Patients suffering from dementia stated that their treating specialist is their medical

expert concerning their dementia and that the GP is their medical expert for comorbidities they might

suffer from.

GP “Ge moet goed geïnformeerd zijn over de mogelijke bijwerkingen, of werkingen van de

medicatie te krijgen hé. Dat al heel belangrijk, vind ik. Dat je weet, die chemo, ok, dat kan, of

iemand die morfine krijgt, of iemand die obstipatie, ja dat is zo iets waar je absoluut, jeuk, dat

zijn allemaal dingen waar je eigenlijk talloze op bedacht zijn hé, slapeloosheid.” (FG GP2, 60y,

f, group)

5.b GP as a collaborator: teamwork with others

The GP is not the only caregiver of a patient suffering from a chronic life-limiting disease. Patients also

encounter other caregivers and organisations. To guarantee optimal care, it is important that GPs

cooperate with these different caregivers and organisations. We grouped the different caregivers as

follows: professional primary caregivers, treating specialist (hospital physician) and patient’s informal

caregivers. The organisations are grouped as others. Although paperwork also can be placed under the

section ‘GP as a communicator’ we added it here because it is essential in the cooperation between the

GP and several other parties.

Professional primary care givers

All three groups, except for patients suffering from dementia who did not mention this, agreed that

enabling community nurses and co-operating with them is an important task of the GP. Community

nurses and GPs agreed that community nurses can supply essential information about the patient’s care

needs. Most patients receive care from a community nurse starting from the moment their GP decided

it was necessary. GPs and community nurses think that the GP needs to give clear instructions to the

25

community nurses, such as task descriptions, instructions for if the patient’s situation deteriorates,

changes in the patient’s care et cetera. Communication can occur through oral conversations, tools (such

as a notebook at the patient’s place) and multidisciplinary meetings.

These methods are not only used for the communication between the GP en the community nurse but

for between all the patient’s professional care givers. Multidisciplinary meetings with the complete team

of caregivers are necessary to discuss problems in the patient’s home care or simply to talk about the

sustainability of the existing approach. Nobody considers it a task of the GP to organize these meetings,

but everybody agrees that the GP should attend them.

GP “Ik denk over de verpleging eerder als doeners en de artsen in dit hier als een denker, die dus

verder het pad mee bepaalt. En dat is dus niet de verpleger, de verpleger, die zal dus een pad,

mee helpen uitvoeren, en daardoor zal die ingeschakeld worden om een aantal informatie naar

de arts te ventileren die de arts zelf niet krijgt. Dan is dat bijvoorbeeld erg nuttig.“ (FG GP1,

62y, m, solo)

CN “Ja, ja, ik denk dat ook. Ik denk dat meestal wij de zorgnoden zien, omdat ge er dagelijks komt.”

(FG nurses1, 44y, f)

Treating specialist (hospital physician)

According to all perspectives, it is a task of the GP to refer the patient to the specialist when a severe

illness is suspected (at moment of diagnosis) or when the GP presumes disease progression (during

treatment and follow-up). At all times, uncomplicated symptoms (such as pain, nausea etc.), should be

treated by the GP while more complicated symptoms should be treated by the specialist.

GPs, community nurses and patients with cancer or organ failure think that besides referring, the GP

should also exchange information and determine treatment decisions together with the specialist. These

perspectives agree that planning between the different levels of care is interesting because specialists

have the best knowledge about the disease and its treatments while GPs know the complete bio-psycho-

social condition of the patient which influences the treatment.

Patients suffering from dementia indicated that co-operation between their GP and treating specialist

would not be of any additional value. GPs stated they receive reports of the treating specialists and stay

up to date about the patient’s dementia, but donnot discuss these with patients. Community nurses did

not give statements about the GP’s cooperation with the treating specialists.

Sometimes, GPs get the opportunity to attend multidisciplinary meetings with the patient’s hospital

physicians. However, generally GPs cannot attend because of practical barriers such as time and

location.

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GP “Eigenlijk is het mokgesprek een goede gelegenheid om dat [input van huisarts betreffende

behandeling patiënt] te doen. Maar de miserie is dat die dikwijls ingevuld worden op momenten

dat ge zelf niet kunt. Dat het bijvoorbeeld voor een ziekenhuisarts gemakkelijk is bijvoorbeeld

vlak na zijn lunch, om twaalf uur, '...' om een half uur binnen te springen zijn woord te passeren

en weg. Terwijl, wij kunnen dan meestal daar niet aanwezig zijn. En daar zou ge dus uw twijfels

kunnen, duidelijk kunnen ventileren over wat er gaat gebeuren he. Ik doe dat soms, maar ge

moet dat ook kunnen. […] Dus dat is een goede gelegenheid om te zeggen, hier moet ge afhaken,

stop.”(FG GP1, 62, m, solo)

P “Stuurt hij [de huisarts] die bloedonderzoeken ook door naar de cardioloog? Ja tuurlijk hij

werkt tezamen […]. Maar hij kijkt ook wat er mankeert en mocht er iets mankeren zegt hij dat

aan de specialist. Maar ze zitten met elkaar te spreken hoor, de specialist belt dikwijls naar de

dokter, een hele litanie over mijn dink en wat hij moet doen en wat voor medicatie hij moet

geven. En euh hij schrijft dat allemaal op he.” (patient suffering from heart failure, 74y, m)

Patient’s informal caregivers

GPs and community nurses state that the GP should take the patient’s informal caregivers into account

(i.e. partner, relatives…). GPs and community nurses experience that on the one hand informal

caregivers co-determine the possibilities of home care and at the other hand provide important

information about the patient’s health status.

Especially in the case of patients suffering from dementia, the informal caregivers are the decision

makers concerning the provided home care. GPs and community nurses stated that GPs should support

informal caregivers of patients suffering from dementia by providing external help to avoid overload of

the informal caregivers. Patients themselves did not discuss this. Despite external support, the practical

and mental burden on the family of patients suffering from dementia might become unbearable which

might result into a referral to an elderly home.

GP “En de mantelzorgers. Het is zeer belangrijk om van in het begin al een soort inventarisatie te

maken, van wat is de draagkracht eigenlijk van de omgeving rondom die patiënt. […] He vaak

zeggen die patiënten zo van: “he ja, het gaat, het gaat”, en dan zegt de partner: “ ja hij ligt de

hele nacht te kreunen in zijn bed,” of, hij is heel onrustig, of...” (FG GP1, 52y, f, group)

GP “En als de partner er voor zorgt denk ik dat er meer nood is voor de partner om te praten En

dat is iets waar je dan als huisarts zelf ook gaat aanpakken S: 'k Denk da ge daar moet op

letten dat die niet overbelast wordt dat er inderdaad praktische zorg is daarbuiten, want als ge

voor een dementerende 24u of 24 moet zorgen. Dat is wel heel zwaar. Je kan dat ook niet altijd

inschatten.” (FG HA3, 44y, f)

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Others

GPs, community nurses and patients suffering from cancer or organ failure indicated that the GP does

not have to take care of every care need by himself. Depending on the need, the GP can solve it or refer

the patient to the suited organisation. Common referrals concern household assistance, material requests,

social services… Community nurses noticed that GPs often have insufficient time and knowledge to

discover or solve these non-medical care needs. They think that it is a task of the GP to cooperate with

community nurses to get information about the patient’s need and take suggested solutions into account.

GP “Maar die sociale noden bijvoorbeeld, dat is wel hier naar voor gekomen, dat dat aan jullie

ook wordt aangegeven, dat patiënten daar veel over spreken. Ja maar als dat aangegeven

wordt wilt dat niet zeggen dat wij het moeten oplossen. ... We kunnen paden aanbieden op die,

opties aanbieden of mensen advies geven..” (FG GP1,53y, m, group)

CN “Ik denk dat op het moment dat de thuisverpleging aan huis komt, dat er heel wat kan

gerealiseerd worden waar dat de huisarts niet van op de hoogte is. Een heleboel zaken naar

comfort toe, in de thuissituatie, ziekenhuisbedden, een druk opheffend kussen… […] ik denk dat

wij door onze jarenlange ervaring en bijscholing, dat wij eigenlijk soms wel beter geschikt zijn

om sturing te geven in een bij patiënten in de palliatieve fase dan de huisarts, hij is dan de

competente persoon, die zoveel jaren heeft gestudeerd, maar naar praktische zaken, ik denk dat

wij heel veel kunnen doen.” (FG nurses1, 51y, f)

Paperwork

Life-limiting diseases require a lot of paperwork, many of these papers are the GP’s responsibility. This

paperwork can occur in any stage of the trajectory. During treatment and follow-up, there are requests

for medication prolongations, material requests, care requests (physiotherapist, community nurse) and

so on. In the terminal phase the paperwork mainly focusses on PHCTs, ACP (advanced directives,

euthanasia request etc.) and financial subsidies for patients in the terminal phase. If ACP is discussed

earlier in the disease trajectory, these papers might already be completed before the terminal phase.

GP “GPa: Ook naar het levenseinde toe, mensen die weten en beseffen dat hun tijd gekomen is,

wat te doen ter voorbereiding van het levenseinde […] Ja louter de praktische dingen.

GPb: Wilsbeschikkingen, euthanasie, aanvragen eventuele op tijd in orde brengen. Puur ook

praktische, waar haalt ge informatie.” (FG GP4, 47y, m, solo + 39y, f, group)

CN “Bijvoorbeeld ook met die premie, palliatieve premie, de meeste huisartsen willen dan niet die

aanvraag indienen voor dat de patiënt echt terminaal is.” (FG nurses1, 36y, f)

P “Ik ben daar al mee bezig van in augustus 2009, dus onmiddellijk als ik wist dat ik een tumor

had. […] van de eerste week dat ik wist dat ik een tumor had, wist ik: euthanasie en dat zal mij

28

zo weinig mogelijk… Dat is dus de aanvraag voor mantelzorgtoelage, heeft de huisarts dus

voor mij mee ingevuld. En dat is het papier van, euh, “wilsverklaring euthanasie.” (patient

suffering from lung cancer,71y, f)

5.c GP as a communicator: being honest, showing compassion and providing psychological care

Patients suffering from a chronic life-limiting disease might have a high psychological burden due to

fears and concerns. When patients cannot cope with this burden by themselves, they sometimes expect

support from their GP. GPs also see this as their task and fulfil it by providing extra time for

psychological support. Community nurses agree that the GP should provide psychological support. Both

GPs and community nurses agree that somatic suffering partially can be avoided or solved through

psychological care. The GP’s availability for psychological suffering is a very important aspect for

patients in their relationship with their GP. They feel safe when the GP listens to their burdens. All three

perspectives agree that the GP can refer patients who need intensive psychological follow-up.

P “en bijvoorbeeld als je in het begin met die angst en zo. Wist je huisarts dat? Ja over die dingen

heb ik het. Bij mijn huisarts kan ik bij wijze van spreken wel eens wenen he. Dus hij weet wel

alles Ja, hij heeft mij ook naar een psychiater doorverwezen. (patient suffering from COPD,,

48y, m)

CN "Moet de huisarts daar [angst van patiënten] op in gaan? Ik vind dat de huisarts daar wel in

moet op in gaan, want hij krijgt veel fysieke problemen door psychische lijden, angst, verdriet…

Dus dan moet hij in zo'n situatie daar wel oog voor hebben.” (FG nurses1, 36y, f)

P “Meestal als ik ga is het voor een lichamelijk probleem of, bij die depressie dan ben ik ook bij

hem geweest en heeft hij een doosje [antidepressiva] voorgeschreven om te zien dan heeft hij

mij gevraagd hoe dat ik me voelde, wat dat de impact was en heeft hij het verder

voorgeschreven.” (patient suffering from brain tumor and sarcoma, 47y, m)

Throughout the disease trajectory, GPs find it their task to keep an eye on the patient’s moral and to

make sure that the patient stays spirited. Community nurses also find this moral follow-up a task of GPs.

Patients with cancer and organ failure need this encouragement from their GP. There was no patient

suffering from dementia who indicated that he or she needed empathy for his or her disease.

P “Als hij bij mij komt voor bloed te trekken, hij vraagt mij uit. […] dus als ik begon met mijn

probleem woog ik 99kg, ik ben gezakt naar 71. Dan vraag ik aan de huisarts, gaat dat stoppen

of wat gaat dat zijn? En hij zegt: ge zit op u ideaal gewicht. Ge moogt toch ni klagen. Ziet ge,

die heeft me iedereen geprobeerd een duwtje te geven.” (patient suffering from bowel cancer,

61y, m)

29

All three perspectives agree that patients should feel comfortable with their GP. A welcome feeling is

obtained if the GP provides time for the patient and their concerns which do not necessarily have to

relate to the illness. All three patient categories think it is important to have a good relationship with the

GP for which empathy (not only about the life-limiting disease), honesty and reliability about

professional knowledge and attitude were described as necessary.

P “k voel mij daar veilig, ik denk dat dat wel de hoofdzaak is. Ik voel mij daar veilig en ik weet

dat ze als ik iets wil zeggen, dat ze daar ook naar zal luisteren. Ze zal niet proberen de dingen

weg te moffelen of te minimaliseren en ik denk als ik de behoefte heb om daar te praten dat ik

dat wel echt kan. “ (patient suffering from breast cancer, 65y, f)

P “en bijvoorbeeld dat verhaal nu met uw dochter als je nu de volgende keer bij de huisarts

komt ga je dat vertellen? Ja K: en hij gaat daar ook wel naar toe luisteren? Jajaja. Daar ben

ik zeker van. Hij is dokter en psychiater. Hij kent een beetje het leven. dat is geen probleem.”

(patient suffering from dementia, 82y, m)

5.d. GP as a scholar: committed to improve palliative care competencies

GPs and community nurses think it is the GP’s responsibility to stay informed about the newest

understandings in palliative care and chronic life-limiting diseases. GPs agree it is their task to follow

training and collect information through reliable sources to guarantee up-to-date knowledge.

CN “ Ik denk een infobrochure, alé omdat, ge kunt een opleiding geven aan een arts, eh, veel

opleiding, er zijn veel artsen ze moeten ook opleiding geven, ze krijgen 5 of 10 punten op een

jaar” (FG nurses1, 51y, f)

GP “En daarom zijn die cursussen dan nu opgekomen he, de CM heeft zo een cursus euh,

begeleiding van familieleden van dementerenden. Hoe gaat ge daarmee om? Wat doet ge als hij

’s nachts wil wegtrekken? '...' Wat praktische tips.” (FG GP1, 59y, m, solo)

30

4. Discussion

GPs, community nurses and patients suffering from cancer or organ failure have well-defined and

comparable views on the GP’s tasks in the PC of a patient with a chronic life-limiting disease. The only

important differences concern the opinion of community nurses and some GPs on care provided in the

terminal phase of life.

The GP’s tasks change during the disease trajectory. There are tasks applicable during specific stages of

the trajectory and tasks that continue during the complete trajectory.

The GP’s tasks during the studied chronic life-limiting diseases are very comparable. The main

differences concern the provided follow-up during treatment. Patients suffering from cancer expect more

psychological follow-up while patients suffering from organ failure need regular follow-up of their body

functions. Patients suffering from dementia seem to have little expectations about their GP’s role in the

PC for their life-limiting disease.

Main findings and interpretation.

Specific moments require specific tasks

Our results show that different moments in the palliative trajectory require specific tasks of the GP.

These tasks are shown in figure 1.

(1) Starting at the moment of diagnosis of cancer or organ failure, patients need their GP to

clarify the specialist’s explanation and to provide psychological support because they are often

overwhelmed by the combination of bad news and complex information. If GPs meet with their patient

around the moment of diagnosis and spend enough time and energy at this stage, the patient-GP

relationship might intensify. A good patient-GP relationship might be crucial during the further disease

31

trajectory because it might enhance the probability that GPs have a leading role in the provided PC. It

also might reduce the probability that patients suffering from a life-limiting disease stop seeing their GP

when being treated by specialists, as often seen in the case of cancer29.

The tasks for the GP in case of dementia are different: the GP should diagnose dementia

him/herself if the patient consults for forgetfulness or when symptoms are obvious. When symptoms

become obvious for the GP, the disease is often advanced which makes disease management less

achievable48 and involvement of the patient in the organisation of psychosocial care less possible.

(2) Later on, during the follow-up phase, the GP should survey the patient’s body functions, the

patient’s medication usage and whether the patient needs additional medical, psychosocial, practical or

existential care. GPs should also communicate test results and discuss treatment decisions. Supposing

that this period takes the longest and covers the highest number of the contacts between the GP and the

patient, it could be a suitable stage for GPs to prudently introduce advanced care planning (ACP). ACP

aims to discuss the preferred goal and approach of future care, for when the patient is not competent

anymore to decide for him- or herself. If introduced early, the patient has sufficient time to reflect about

these delicate topics and to discuss them with his/her family. Early introduction would also mean

sufficient time for the GP and the patient to fulfil the accompanying paperwork. Although GPs realize

that ACP should be initiated early, it is striking that GPs rarely initiate ACP, unless the patient brings

up the subject. Barriers that the interviewed GPs perceived for discussing ACP were the association of

ACP with death and herewith the possible loss of hope. GPs discuss ACP more often with patients

suffering from cancer compared to patients suffering from other life-limiting diseases10, perhaps because

cancer is more associated with death. Organ failure or dementia typically takes many years with an

unpredictable trajectory which makes it less associated with death. Although GPs find it their task to

initiate ACP for patients suffering from any type of life-limiting disease, they find it hard to do early in

the disease trajectory. Research done with GPs showed that the barriers which GP’s perceive to initiate

ACP not only relate to themselves (lack of knowledge about treatment/trajectory, lack of collaboration

with the specialist and lack of key moments) but also relate to the patient and his/her family (lack of

awareness of diagnosis and prognosis).49

(3) In case the patient has an exacerbation of symptoms, the GP should be available for urgent

consultations, treatment and, if necessary, referral. Patients suffering from cancer or organ failure

usually receive clear instructions from the GP for when acute somatic symptoms appear. Patients

suffering from dementia might show sudden aggression, runaway behaviour etc. which is unbearable

for, particularly, the close caregivers. In clinical practice, it is probably the most feasible for GPs to

support the close caregivers and use their observations to follow-up the patient’s behaviour and to adjust

the habitual medications if necessary.

32

(4) When the patient is considered “terminal” or in the final days or weeks of his life, the GP

should inform the patient and his/her family about impending death. By being honest about the life-

expectancy and by providing sufficient time for the issues of dying patients and their family, GPs can

avoid delicate situations in which the patient/family expects answers to their questions from the

community nurse who they see much more frequently than the GP.50 The collaboration with PHCTs can

be initiated by the GP if the GP cannot provide sufficient terminal care for the patient and his/her family

or the GP can consult PHCTs for specific information about the used medication or tools.

Returning tasks during various stages

There are tasks applicable during various stages in the palliative trajectory, we merged these tasks into

roles. Looking closer, these roles can be assigned into four of the seven integral roles a competent

physician should play according to the CanMEDS program of the Royal College of Physicians and

Surgeons of Canada (RCPSC).47 The roles we found which are explicitly applicable for PC and similar

to the CanMEDS roles are: medical expert, collaborator, communicator and scholar. The other three

roles are manager, health advocate and professional. The roles are shown in figure 2.

(1) Medical expert: the GP has to provide symptom control and have a good knowledge about

the possible adverse effects and interactions of the medicine used for the disease management.

According to the CanMEDS framework, the role ‘medical expert’ is the integration of all the CanMEDSs

roles and the central physician role.47 This role is the most evident role and the role that was mostly

implemented in the provision of PC.

(2) Collaborator: our results show that the GP should cooperate with others to realise optimal

PC. For the health status of the patient, the GP should cooperate with all the professional caregivers that

the patient encounters, mostly community nurses, specialists and PCHTs. Collaboration with the

patient’s informal caregivers enables the GP to gather important information about the patient’s care

33

needs and to evaluate the success of the provided care and the determine the possibilities of home care.

Research done with GPs showed that when providing PC, GPs cooperate in 98% of the time with at

least one other caregiver and averagely taken with four other caregivers. GPs mostly cooperate with the

patient’s informal caregivers, with each other and with community nurses (83%, 71% and 63%

respectively). Determinants for cooperation in PC between GPs and other caregivers showed to be the

patient’s lower age, cancer as the life-limiting disease and provision of psychosocial care.51 These results

show that older patients and patients suffering from other life-limiting diseases but cancer, often do not

receive optimal PC although they are eligible to receive it and would benefit from optimal PC.

GPs should outsource needs to the right partner while remaining the key player with a holistic view on

the big picture. This result is consistent with previous research which showed that GPs should guarantee

continuity and keep focus on the big picture.24 As stated in the CanMEDS, optimal care for the patient

can be achieved if the GP works effectively within a healthcare team.47 Because providing good PC

takes a lot of the GP’s time, another advantage of teamwork is that it should allow the GP to focus on

the other aspects of his/her profession, of which providing PC is often a minor part.

(3) Communicator: GPs should facilitate a solid patient-GP relationship through honest communication

and by delivering psychological care. Since communication skills as a course have been introduced just

recently in the physician’s education, the quality of communication and the provided psychological care

in the clinical practice is mostly determined by the GP’s personal strengths and interests. GPs should

also interact effectively and dynamically with the involved professionals and the patient’s informal

caregivers. Communication with the different parties is bestly achieved by multidisciplinary meetings.

The communication requires a lot of paperwork that the GP should fulfil. In reality, many GPs dislike

paperwork52 since they find it very time-consuming and not profitable. Since faulty completed papers

have consequences for the patient, a solution to this restraint should be found. Attending

multidisciplinary meetings is also not profitable but GPs might find themselves more useful during these

meetings compared to blunt paperwork. Research showed that regular multidisciplinary meetings lead

to a better continuity of care, a better knowledge of the patient’s care needs and a better inter-

professional cooperation.53

(4) Scholar: GPs should be engaged to improve their palliative care competencies by

continuously learning about PC and the life-limiting diseases through education and personal reflections.

Since these roles seem to be part of the CanMEDS roles47 on which the education of physicians in many

countries nowadays is based, every (young) physician should be competent in these roles. This is why

it can be questioned whether PC is not just good medical care instead of special care. This would

implicate that PC is part of good medicine and that any physician should be able to provide it.

34

Congruence between the perspectives

A striking finding is that the GP’s and the community nurses’ opinions are mainly consistent. The key

difference between GPs concerns the view on who should perform terminal care. All the GPs agree that

terminal care is indispensable for the patient and his/her family and that it should cover psychosocial,

existential and practical support. Some GPs prefer to outsource terminal care to PHCTs because they do

not feel comfortable with death, because they find terminal care too time-consuming or because they

have ideologies which limits them in providing the terminal care the patients might want, such as

euthanasia or other life-shortening acts. Other GPs prefer to provide terminal care themselves because

they see it as their task. These GPs only contact PHCTs for practical tips and tricks about medication

schemes etc.

GPs and community nurses agree that community nurses play an important role in PC, in reality

however, the GP-community nurse cooperation is often of too little quality and quantity. Research

showed that in 63% of the patients receiving PC, GPs work together with community nurses.51 This

means that one in three patients receiving PC has no involvement of community nurses since it are the

GPs that should setup the involvement of community nurses. By this insufficient GP-community nurse

cooperation, optimisation of PC is impossible because valuable information provided by community

nurses is being missed since community nurses have an in-depth relationship with the patient31 which

allows community nurses to provide essential information about the patient’s care needs to GPs. Other

benefits that these patient not (or to little) get are care (wound care, assistance during bathing),

psychosocial support and education.31–34 Since community nurses are considered indespensable in the

provision of PC, they should be involved more frequently.

Differences between the patient categories

The tasks of the GP differ slightly for the three explored patient groups. These differences are most

likely due to variations in the disease trajectories and experiences.37 In case of organ failure and

dementia, many years can go by before the patient experiences the disease as life-threatening, while the

diagnosis of cancer is immediately associated with death. On the one hand, patients suffering from

cancer often need a lot of psychological support and look at their GP for this support, which asks for

extra participation of the GP. On the other hand, there are patients suffering from cancer who charge

their specialist with GP-tasks (such as prescribing habitual medication, follow-up…) which makes the

GP obsolete during life-prolonging treatment29. The provision of PC by the GP occurs less frequently

with younger patients with a life-limiting disease, especially cancer.22 Probably because they have less

frequently a solid relationship with their GP and because they are more inclined to skip GPs and search

directly for specialist’s care. Valuable communication between the patient and the GP at the moment of

diagnosis possibly enhances the further patient-GP relationship.

35

In the case of organ failure, the GP is mostly occupied with follow-up of the disease among his or her

regular primary care for the patient. Patients suffering from dementia should be classified in two groups:

those who are still mentally competent and those who are not anymore. GPs know that it is in the best

interest for patients suffering from dementia to communicate the diagnosis and initiate ACP timely. GPs

find it a task of themselves to communicate the diagnosis dementia but many GPs refuse to do so because

they are scared for denial from the patient with harmful consequences for the patient-GP relationship.

Once the patient is no longer mentally competent, he or she seems to push the GP away. In this stage,

however, patient’s family request more communication and guidance from the GP. We observed that

the patients suffering from dementia that were interviewed for this study did not express the need to

receive psychosocial support or guidance towards the end of their life.

Strengths and weaknesses

To our knowledge, this is the first study describing the GP’s tasks and roles in the provision of palliative

care from diagnosis onwards until death and according to three different perspectives: GPs and

community nurses and patients. Furthermore, these three groups have diverse backgrounds which

ensures versatility and validity of the results. Versatility is expressed as follows: 1) younger and elder

GPs, GPs working alone or in group, GPs with and without special interest in PC. 2) Regular community

nurses and those specialized in PC. 3) Patients suffering from dementia, cancer or organ failure, in all

stages of the disease trajectories.

Focus groups with GPs and nurses were organized separately, in small groups which maximized the

contributions of each participant. All the focus groups were organised as roundtable discussions in

neutral meeting rooms. Each session was led by a trained moderator while an observer took note of

important body language messages and overall impressions. The focus groups with the community

nurses were held ahead, so their views and comments could be presented to the GPs whom could give

immediate feedback.

The researchers were not engaged in the work of the participating GPs or community nurses or in the

provided palliative care of the patients. This objectivity allows participants to express their thoughts

freely. In addition, all participants were interviewed according to the same topic list to make sure that

their responses could be interpreted in the same context.

Two researchers with different point of views (professional researcher versus graduating medical

student) working independently together led to more useful and enriched findings and increased the

trustworthiness of the research.

A known weakness of qualitative research is that interpretation of data collected from open questions

can be influenced by the researcher’s personal opinions.42 We tried to overcome this individual

36

interpretation by letting two researchers interpret the same data, compare their (un)common findings

and discuss disagreements.

Another limitation is that the participants in this research were perhaps the motivated ones and that

assumptions about the collected data cannot be made without sufficient prudence.

Implications for future research and clinical practice

Future research could focus on the feasibility of the identified tasks for the GP. Since every possible

barrier limits the GP in performing his or her tasks, these barriers should be detected and tackled to

allow proper implementation. Barriers already mentioned by our participants involved lack of time and

poor communication with other professional care takers.

GPs and community nurses seem to agree on the idea of early introduction of a palliative care approach

for any type of chronic life-limiting illness. The WHO is promoting for this early introduction for over

a decade, but despite this promotion and shared visions, PC is rarely introduced early. Future research

could find out what the main barriers are.

Additional future research could be done to find out what the impact of communication at the moment

of diagnosis is on the degree of GP-involvement in the further disease trajectory.

In order to improve clinical practice, a guideline could be created which lists and explains the important

points of attention that the GP should take into account when providing PC. These points should focus

on the different tasks that the GP should perform in each phase of the disease trajectory and on the

differences in the provided tasks for the three main disease trajectories. Even though the found tasks are

neither radical nor ground-breaking, they are too little part of the current practice. To improve the

implementation of these tasks, tips and tricks on how to perform these tasks could be added in the

guideline.

Similar visions of the involved perspectives indicate that there is a solid foundation to provide good

palliative care. The provision of PC could be promoted to boost its implementation from diagnosis

onwards. Perhaps through campaigns focussing on both the medical world and the public that make

palliative care less associated with death. Another way could be changing the term palliative care in to

a more neutral term.

37

5. Conclusion

The GP’s tasks and roles during each phase and during the overall disease trajectory of patients suffering

from a chronic life-limiting disease can be described clearly. Moreover, the views on these tasks of GPs,

community nurses and patients suffering from cancer or organ failure are comparable. Patients suffering

from dementia only assign few tasks concerning their life-limiting disease to their GP. The found

tasks are well-defined and easy to implement in the usual care that GPs provide. By using these results,

a guideline could be created which shows both the specific tasks as well as the continuous tasks that

GPs should fulfil during the disease trajectory.

The competences needed to provide good palliative care are part of the seven CanMEDS roles a

competent physician should have.47 This implies that every physician should be able to deliver good PC

and that responsibilities should not be pushed away because PC is too complicated. Contrary, perhaps

PC should be seen as part of the usual care and not as extra care.

38

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