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					                               PhD Thesis




Factors of importance for organising palliative care at home
     Register-based population studies of end-stage cancer patients



                              Birgit Aabom




      Research Unit for General Practice, Institute of Public Health

                       Faculty of Health Sciences




                                  2006
This thesis is based on three papers (I-III)


I.     Population-based study of death of patients with cancer: implications
       for GPs. Br J Gen Pract 2005; 55: 684-9.


II.    Defining cancer patients as being in the terminal phase: who receives a
       formal diagnosis and what are the effects? J Clin Oncol 2005; 23: 7411-6.


III.   Does persistent involvement by the GP improve palliative care at home
       for end-stage cancer patients? Palliative Medicine 2006; 20; 507-12.




                                                                                   2
1   PREFACE


This PhD study was carried out during my appointment as a research fellow at the Research Unit

for General Practice in Odense, University of Southern Denmark, in the period of 2002-2006.

             I sincerely thank my chief supervisor Jakob Kragstrup, MD, Professor and Head of the

Research Unit for General Practice for his encouragement and guidance that made this thesis

possible. I also want to thank my other three supervisors, Henrik Støvring, PhD, Hindrik Vondeling,

PhD, and Leiv S. Bakketeig, Professor, for their inspiring supervision and support throughout the

process. Henrik Støvring especially for, from the very start, enthusiastically supporting the idea of

using the Danish registers to analyse factors of importance for end-stage cancer patients and his

creative thinking, not only in statistical issues. Special thanks to secretary Lise Stark for her

competent proofreading and bright comments to the manuscripts. I would like to thank Hans Henrik

Storm and Gerda Engholm from the Department of Cancer Prevention and Documentation, Danish

Cancer Society, for inspiring input in the planning phase and access to data from the Danish Cancer

Register. Also thank you to Palle Pedersen, MD, from the Municipality of Odense and to Michael

Bruus, Department of Health Sector Planning in the County of Funen, for access to data.

My hours in front of the computer linking register data would have been a weary task without the

first-class social life with the other PhD students, with local GPs working in the field and with the

administrative staff at the Research Unit. I want to thank all for support, for provocative questions

and inspiring hours during formal and informal breaks in the coffee room.

Last but not least, I wish to thank my husband Thorben and Mette, Sofie and Bodil for their love

and daily support throughout the process.

                                                                    Odense, March 2006

                                                                    Birgit Åbom




                                                                                                   3
2    TABLE OF CONTENTS

                                                                               Page

1.   PREFACE                                                                    3

2.   TABLE OF CONTENTS                                                          4

3.   ABBREVIATIONS                                                              7

4.   DEFINITIONS                                                                8

5.   THIS THESIS AT A GLANCE                                                    9

6.   INTRODUCTION                                                              10

     6.1. Place of death of cancer patients                                    10

          6.1.1. Place of death in western countries – short historical view   10

          6.1.2. Is dying at home the same as a “good death”?                  11

     6.2. Organisation of palliative services in Denmark                       12

          6.2.1. National Health System                                        12

          6.2.2. Palliative care at basic and specialised level                12

          6.2.3. Palliative care at basic level                                13

                 6.2.3.1 Defining cancer patients as terminal?                 13

                 6.2.3.2. The terminal declaration (TD)                        14

                 6.2.3.3. GP in end-of-life cancer care                        15

     6.3. Research in palliative care                                          16

          6.3.1. Historical view and methodological challenges                 16

          6.3.2. Mortality follow-back design                                  17

7.   AIMS                                                                      19



8.   STUDIES                                                                   20




                                                                                    4
8.1. General methodological issues                                              20

       8.1.1. Setting                                                           20

       8.1.2. Observation period (Time scale)                                   20

       8.1.3. Health Care Data                                                  21

                8.1.3.1. Danish Civil Registration System                       21

                8.1.3.2. The Danish Cancer Register                             21

                8.1.3.3. The Danish National Hospital Register                  22

                8.1.3.4. The Danish Register of Causes of Death                 22

                8.1.3.5. The Danish National Health Service Register            22

                8.1.3.6. Registration of community nurse activity and TD        23

8.2. Study I:      Population-based study of death of patients with             23
                   cancer: implications for GPs
       8.2.1.    Study I: Patients                                              23

       8.2.2.    Study I: Data analysis                                         24

       8.2.3.    Study I: Results                                               26

8.3.   Study II:     Defining cancer patients as being in the terminal phase:   31
                    Who receives a formal diagnosis and what are the effects?
       8.3.1.    Study II: Patients                                             31

       8.3.2.    Study II: Data analysis                                        32

       8.3.3.    Study II: Results                                              32

8.4. Study III: Does persistent involvement by the GP improve palliative care   35
                    at home for end-stage cancer patients?
       8.4.1. Study III:    Patients                                            36

       8.4.2. Study III: Data analysis                                          36

       8.4.3. Study III: Results                                                37




                                                                                     5
9.    DISCUSSION                                                                          41

      9.1. Principal findings                                                             41

      9.2. Methodological considerations
             9.2.1. Choice of study design                                                41

             9.2.2. Study populations                                                     43

             9.2.3. Quality of data                                                       43

             9.2.4. Confounding-interaction-effect modification                           46

             9.2.5. Place of death as outcome measure – pros et cons                      49

      9.3. Discussion of the results in relation to other studies                         49

10.   CONCLUSIONS                                                                         52

11.   PERSPECTIVES                                                                        53

      11.1. Health care                                                                   53

      11.2    Future research                                                             53

12.   SUMMARIES                                                                           55

      12.1. Dansk resume [Danish summary]                                                 55

      12.2. English summary                                                               58

13.   REFERENCES                                                                          61

14.   APPENDICES                                                                          73

      14.1. Paper I -III

      I.      Population-based study of death of patients with cancer: implications
              for GPs. Br J Gen Pract 2005; 55: 684-9.
      II.     Defining cancer patients as being in the terminal phase: who receives a
              formal diagnosis and what are the effects? J Clin Oncol 2005; 23: 7411-6.
      III.    Does persistent involvement by the GP improve palliative care at home
              for end stage cancer patients? Palliative Medicine 2006; 20: 507-12.




                                                                                               6
3    ABBREVIATIONS



CI         Confidence interval

CPR        Central person registration

EORTC      European Organisation for Research and Treatment in Cancer

GP         General practitioner

LPR        Landspatientregister [The Danish National Hospital Register]

NHS        National Health Service

OR         Odds ratio

QoL        Quality of Life

RCT        Randomised controlled trial

TD         Terminal declaration

UK         United Kingdom

US         United States of America

WHO        World Health Organisation




                                                                          7
4   DEFINITION



    The WHO definition of palliative care:



    Palliative care is an approach which improves the quality of life of patients and their families

    facing life-threatening illness, 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.


    Palliative care:


       Provides relief from pain and other distressing symptoms;

       Affirms life and regards dying as a normal process;

       Intends neither to hasten nor postpone death;

       Integrates the psychological and spiritual aspects of patient care;

       Offers a support system to help patients live as actively as possible until death;

       Offers a support system to help the family cope during the patient’s illness and in their

        own bereavement;

       Uses a team approach to address the needs of patients and their families, including

        bereavement counselling, if indicated;

       Will enhance quality of life, and may also positively influence the course of illness,

       It is applicable early in the course of illness, in conjunction with other therapies that are

        intended to prolong life, such as chemotherapy or radiation therapy, and includes those

        investigations needed to better understand and manage distressing clinical complications.


                                         www.who.int/hiv/topics/palliative/care/en/ (17/02/2006)



                                                                                                        8
5   THIS THESIS AT A GLANCE


    5.1. What is already known on this subject?

               A majority of seriously ill cancer patients has a preference for dying at home.

                However, only a minority of patients actually die at home in most Western

                countries

               Often physicians do not define cancer patients as being terminal or their prognostic

                estimates tend to be optimistic

               Cancer patients emphasise the importance of the relationship with their GP in end-

                of-life cancer care but the influence of the GP is not fully understood


    5.2. What does this study add?


               Home visits conducted by GPs were strongly associated with the possibility of

                patients with end-stage cancer dying at home

               Being explicit in the shift from curative to palliative focus in end-of-life cancer

                care was associated with fewer admissions and more patients dying at home

               Women and the elderly were less likely to receive an explicit terminal diagnosis

               Provided that correct temporal relations are used, the mortality follow-back design

                can be a suitable and an ethical research method to highlight and monitor end-of-

                life cancer care




                                                                                                      9
6   INTRODUCTION



6.1. Place of death of cancer patients

Dying at home and remaining at home as long as possible is of great importance to a majority of

seriously ill cancer patients and their families.1-8 However, in most western countries only a

minority of patients actually die at home.9-21 One of the first prospective studies to present this

antagonism was Townsend et al in BMJ in 199022: Of patients dying in hospital, 69% had

preferred to die elsewhere.



6.1.1 Place of death in Western countries – short historical view

Until the first decades of the 19th century, place of death was usually the patient’s home. Dying was

part of life. Modernism, especially from the start of the 20th century, changed the attitudes towards

death. Modernism represented a tendency to spare society from the hideousness of death struggle

and from death in everyday life. Death and grief ceremonies (e.g. condolences and wearing black

clothing) diminished or disappeared. This trend increased between 1930 and 1950. Dying moved

from home surroundings to hospitals (institutional death) where the patients often died alone. This

tendency increased due to the development of modern medical science and the possibilities of

conquering the dying process, e.g. antibiotics and development of the ventilator during the polio

epidemic in 1951-52.23-25

              A shift in society’s view on death and dying initiated in 1967, where Dr. Cicely

Saunders26 opened St. Christopher's Hospice in South London, England, as the first academic

hospice. Hospice is a concept of caring derived from medieval times, symbolising a place where

travellers, pilgrims and the sick, wounded or dying could find rest and comfort. The contemporary

hospice offers comprehensive programmes of care to patients and families facing a life-threatening




                                                                                                      10
illness. In 1969, Dr. Elizabeth Kubler-Ross published the book: “On death and dying” based on

interviews with more than 200 terminally ill patients.27 In the years to follow, her theories of the

dying process were pioneering. However, still in the seventies and eighties the proportion of

hospital deaths increased17. In 1949 49%, in 1958 61%, in 1977 70%, and in 1990 80% of cancer

patients died in hospital in the US.28

               In the last part of the nineties, interest in death, end-of-life and palliative care has

developed considerably.29-33 The World Health Organisation (WHO) formulated in 1986 a

definition of palliative care in the wake of the HIV epidemic, with an update in 200234 (See

definitions). Further, palliative care as a concept was refined by an international working group

convened by the European School of Oncology in 2004.35



6.1.2. Is dying at home the same as a “good death”?

Despite the growing interest in palliative care, dying alone in pain and fear of death is still the

situation for many end-stage cancer patients throughout the world.36 To achieve a “good death”
37
     various physical, structural, emotional and spiritual issues are important, i.e. receiving

adequate pain and symptom management,38 adequate informal care resources being available,8

possibilities of preparing for death,39,40 so as to achieving a sense of completion, a sense of

control and avoiding inappropriate prolongation of dying.41

               Dying at home is doubtless only one component of a “good death”. However,

dying at home might implicitly include some of the above-mentioned issues. Dying at home

might, if the necessarily help is accessible, favours that sense of control and patient autonomy

that strengthens a “good” death.




                                                                                                      11
6.2. Organisation of palliative services in Denmark

6.2.1. National Health Services

Care for end-stage cancer patients is part of the responsibility of the National Health Service

(NHS).32 The Danish NHS is divided into three administrative levels, where the responsibility

for the managing and financing of the hospital sector lies with 15 administrative units (counties),

whereas community nurse services and nursing homes are managed by the 271 municipalities.

In 2007, a politically approved Local Government Reform42 will take effect, centralising the 15

counties into 5 regions and reducing the number of municipalities from 271 till 98. Before and

after the Local Government Reform, the GPs will continue to be self-employed, tax-funded in a

mixed remuneration system with capitation fee and fee for service. GPs have the role of

gatekeepers for secondary care and nearly the total Danish population (97%) is listed with a GP.

GPs have daily office hours from 08:00 to 16:00. In all counties GPs are organised in out-of-

hours co-operatives providing GP services to patients between 16:00 and 08:00.43

              Specialised palliative care services have been developing since the first Danish

Hospice opened in 1992.44 In 2005, a total of 8 institutions with 101 palliative care specialist

beds and 16 palliative teams were available for end-of-life care.45



6.2.1. Palliative care at basic and specialised level

The Danish National Board of Health (http://www.sst.dk; 17/02/2006) operates (as WHO) with

palliative care at basic and expert level:

“Palliative care at basic level implies the care provided in hospital departments and at home. The

care in hospital and nursing home is conducted by the usual staff and at home by community nurses

and the GPs, while specialist palliative care is targeted patients with complex symptoms and is




                                                                                                      12
conducted by health care services with palliative care as their core specialty”

(www.sst.dk/Planlaegning_og_behandling/Planer_Indsatser/Palliativ_indsats ;17/02/2006)



6.2.3. Palliative care at basic level

In most cases, end-stage cancer patients are discharged from hospital for terminal care in the

primary health care sector. The basic level includes the GP, the community nurse and informal

carers. Problems in planning and conducting quality end-of-life cancer care at home can appear

if the shift in focus from active, potentially curable anti-cancer treatments to palliative and

terminal treatment in the primary sector is blurred or hampered by organisational, relational or

personal barriers.46,47



6.2.3.1. Defining cancer patients as terminal?

Deciding that a cancer course has come to a terminal phase is an ongoing challenge for

physicians.48-51 Despite development of prognostic models and instruments for predicting survival

in hospitalised late-stage cancer patients52,53 most physicians do either not define patients as being

terminal, or their prognostic estimates tend to be optimistic.54-57 This might affect patients’

appropriate and timely referral to specialist palliative care services58,59 or can lead to unplanned

hospitalisation due to poorly co-ordinated or otherwise inadequate supportive care services being

available at home.46 It may also lead to problems such as poor symptom control, i.e. restricted

morphine prescription60-62 or “carer fatigue” due to insufficient support to informal carer.63-67

Defining a patient as terminal might provide opportunities to plan the terminal phase68 which could

in the end result in better quality of end-of-life for patient and for carer.41

        Entering the terminal phase of a cancer disease may be clinically recognised by indistinct

patterns such as lack of response to treatment, increased disease progression, the onset of anorexia,




                                                                                                   13
or the loss of will to live. Cancer type may be of importance for terminal definition since some

types have a well-known poor prognosis, for example, lung cancer69 and pancreatic cancer.70 This

might facilitate definition of the terminal status while other types of cancers or an inaccurate

diagnosis might tend to hold back a clear terminal diagnosis. In the elderly a cancer disease might

be less obvious, less well-diagnosed due to co-morbidity. This could hamper or delay a clear

terminal diagnosis.71


6.2.3.2. The terminal declaration (TD)
                                             24,72
The Danish “terminal declaration” (TD)               makes the important and difficult shift from

curative to palliative care explicit (as contrasted with implicit and not expressed). A TD can be

issued to patients by a physician (general practitioner or hospital physician), if the physician

finds the patient to be terminal (not likely to benefit from curable treatment and not likely to live
                                                                              73-75
for more than six month). The intent of the Danish Social Services Law                is to support the

patient and the family either at home or in a hospice. The TD entitles the patient to full

reimbursement of drug expenses, reimbursement of expenses for equipment used in home care.

Furthermore, an informal carer may be entitled to full-time or half-time paid leave.76-78

Informed consent from the patient is needed, but the patient does not have to sign the

declaration. Before March 2000, all requests for TD had to be applied for at the municipality. In

2000, TD was separated in two; reimbursement for drug expenses had to be applied for at the

Danish Medicines Agency79, an agency under the Ministry of the Interior and Health, while

medical aids and paid leave still had to be applied for at the municipality. However, the key

content of TD was the same as before 2000.




                                                                                                          14
6.2.3.3. GP in end-of-life cancer care


The influence of the GP in end-stage cancer care and on place of death of cancer patients is not

well researched,80 but some elements of the GP role have been studied in small, selected

populations or commented in editorials. Physician home visit was found pivotal in improving

patient outcomes in a study of 298 patients81. In bereavement interviews of informal caregivers,

the association of dying at home was significant, when the family physician made a home visit.
2,82
       In a study of 73 patients with cancer, support by a family physician was associated with

home death.83 In a retrospective interview of 48 carers, accessibility of the GP was valued

important65,84 and cancer patients have emphasised the importance of an individual relationship

with their doctor.85

                In other papers, e.g. editorials, case stories, authors consider some of the possible

functions of the GP in end-of-life care besides control of symptoms, i.e. a willingness to talk

about the process of dying40,86,87 or highlight the GP skills to champion the philosophy of

terminal care,29,88-91 but also insufficiency of the GP,76,92-94 frustration of the GP due to a poor

opinion of the quality of the care provided46,95,96 and the need and initiatives for improving the

necessary GP qualifications.47,97-101

                However, very few researchers have analysed the influence of the GP in end-of

life cancer care in population-based studies. In a retrospective study of 9714 Canadian cancer

patients an association between family physician continuity of care measured by a Modified,

Modified Continuity Index (MMCI) and location of death was found102 which indicates an

association between GP values, i.e. continuity of care and location of death.

                Through the studies in this thesis, we want to explore the hypothesis derived from

former studies and editorials that the GP seems to have various fundamental values in end-of-

life cancer care. We decided to incorporate a careful time-analysis of the health services



                                                                                                        15
provided for all cancer patients in a well-defined region and time-frame. Futhermore, we aimed

to analyse the effect of the GP in the subpopulation receiving TD (home death planned) and in

the subpopulation not receiving TD.




6.3.          Research in palliative care



6.3.1.        Historic view and methodological challenges

A few case stories, e.g. an article in The Lancet in 1952, ”opened a door on some very dark

scenes” about end-of-life cancer care in the UK103 but very few studies on end-of-life cancer

care had been carried out at that time. Since the mid 1980s, medical research in palliative

medicine and end-of-life cancer care has increased considerably.104 One of the main challenges

has been to find outcome measures and measuring instruments which cover the complex

physical, emotional and spiritual needs of end-of-life cancer patients.105 The EORTC Quality of

Life Group has recently presented a quality-of-life instrument aimed at palliative care.106

Anyhow, in palliative care research, the persistent problem is frailty of the patients. Results from

RCTs, questionnaires and interview studies are often biased by dropouts either due to

deterioration of the condition or death of the patient.4,45,107-113 Place of death can, on the other

hand, easily be measured and made operational. Well aware that place of death is an indirect

measure of quality of end-of-life cancer care, place of death is, for the time being, probably the

most valuable outcome measure in population-based studies.114




                                                                                                       16
6.3.2. Mortality follow-back design


“Twenty years ago, the challenge was to engage healthcare workers in the care of the dying. Ten

years ago, the challenge was to engage healthcare organisations in quality improvement efforts on

end-of-life care. Today, the challenge is to develop systematic and comprehensive information on

the quality of end-of-life care at the population level.” Editorial BMJ 2003; 327: 173-4.

Despite the rapidly growing research in palliative medicine in the last years, population-based data

are still lacking. Most research by far has been carried out among patients already attached to

specialist palliative care services or hospices, home hospices and other specialist programmes for

end-of-life care. Research groups in Canada2,115 and in Boston, US116 have in recent years been

working to identify and evaluate potential indicators for the quality of end-of-life care, focusing on

processes that can be measured using data already collected electronically e.g. data in registers,

claims, and other administrative data. The group in Boston is currently validating the measures

against prospectively collected assessments of quality of care made by patients and their family

members (http://www.dana-farber.org/pat 13/02/2006). The approach of working back from date-

of-death to study care received by patients over a period of time prior to their death has been

recommended in the US in 2003 by the National Cancer Policy Board.115-120 However, the value of

such studies with a retrospective design has recently been the subject of contention. 121 The major

problem raised was the absence of a clearly defined origin of the terminal phase. Was the patient

actually dying (~in a clinically recognised terminal phase) or did the patient die in potentially

curable phase (for instance during surgery)? One could argue that if there were a clear date of

origin of the terminal phase it would be possible by this method to mimic an ordinary cohort study

with respect to analysis and interpretation. From this perspective the Danish National Health

Service offers a unique opportunity to conduct valid mortality follow-back studies.122,123 Not only

are extensive data available for all cancer patients – including their use of health care services – but



                                                                                                     17
the rather large group who receives a terminal declaration (TD) may actually be viewed as a cohort

of terminal cancer patients with a reasonably well-defined origin of their terminal phase.




                                                                                               18
7. AIMS



The purpose of the thesis was to identify factors of importance to meet the desires of a majority of

end-stage cancer patients in the western countries, i.e. to stay at home as long as possible and to die

at home.



Based on a mortality follow-back design we aimed:



   1) To explore factors associated with place of death in an unselected population of patients

       dying from cancer and, in particular, to explore whether GP and community nurse

       services were associated with place of death adjusted for patient-related factors.



   2) To find population-based patient-related factors of importance for the formal terminal

       diagnosis and to analyse the implications of such a diagnosis on some important and

       measurable parameters of quality of end-of-life care in cancer.



   3) To analyse the effect of GP home visits on granting a terminal declaration (TD) and on place

       of death.




                                                                                                     19
8. THE STUDIES



Section 8 of the thesis first describes general methodological issues. The following sections give

a short version of the 3 studies published as separate papers (Papers I-III). The first study

describes the study population and analyses factors of importance for place of death of patients

with end-stage cancer. The second study analyses the important shift from curative to palliative

focus of care and its implications for planning end-of-life cancer care, while the third study, in

depth, analyses GP home visit as a marker of persistent involvement in end-of-life cancer care.



8.1. General methodological issues



8.1.1. Setting

The setting of the three population-based studies was the island and the County of Funen in

1996-98 with a population of approx. 470 000. Data in the studies represent the latest validated

data at the time of writing. The study population comprised all patients in the county who died

of cancer in the 3-year period.



8.1.2. Observation period (Time scale)

We obtained healthcare information on deceased cancer patients in their last 3 months of life.

The decision to start data collection at 3 months prior to date of death (left censoring) was an

estimate based on literature studies with reference to duration of the terminal phase.29,54,57,124-131




                                                                                                         20
8.1.3. Health care data

We obtained health care information from the Danish Civil Registration System,132 the Danish

Cancer Register,133 the Danish National Hospital Register,134 the Danish Register of Causes of

Death,135 the National Health Service Register136 and the registration of community nurse

activity and the terminal declaration (TD) in the municipalities. The personal identification

number assigned to every citizen in Denmark at birth or immigration permits accurate,

individual-based linkage of information between registers.



8.1.3.1. Danish Civil Registration System (CPR)

The Danish Civil Registration System132 was set up in 1968 on the basis of the previously

manually compiled municipal registers. The civil register contains information about each

citizen, including the personal identification number, former (historical) addresses, names, civil

status and citizenship. The road system register in CPR contains current information on all roads

in the nation. This information was used to find nursing home addresses. The Danish Ministry

of the Interior and Health's Central Office of Civil Registration (the CPR-Office) is in charge of

the Danish Civil Registration System and functions as the main provider of basic personal

information to public authorities and the private sector.



8.1.3.2. The Danish Cancer Register

Since 1943, the Danish Cancer Register134 has collected information on all individuals in

Denmark with cancer.133,137     The registration is based on notification forms completed by

hospital departments and GPs whenever a case of cancer is diagnosed or found at autopsy, and

whenever there are changes to an initial diagnosis. By annual linkages to the death certificate

files the cause of death is noted.       Unclear or contradictory information, either within a




                                                                                                     21
notification form or between forms, leads to queries in approximately 10% of the notifications

received. Comprehensive evaluation has shown that the register is 95% to 99% complete and

valid.138-140



8.1.3.3. The Danish National Hospital Register

The Danish National Hospital Register (Landspatientregistret, LPR) keeps records of nearly all

(99%) the somatic hospitalisations in Denmark since 1977.141 The register receives new data

from all Danish hospitals once a month. This computerised central register contains, for each

discharge, information on the personal identification number of the patient, dates of

admission/discharge, up to 20 diagnoses, and every surgical procedure performed during the

respective admission, as well as all out-patient contacts by date and diagnosis. The register is

frequently used for research. Ad hoc validation of the administrative information has shown

agreement in 98.5% of the cases.



8.1.3.4. The Danish Register of Causes of Death

Since 1875, the Danish National Board of Health has published the causes of death based upon

the death certificates. From 1970 the register has been fully computerised.142,135 Declining

autopsy rates (about 12% of deaths) threaten the quality of the data; however, in our studies we

used the cross-checked, well-validated causes of death from the Danish Cancer Register and

only used place of death from the Register of Causes of Death.143



8.1.3.5. The Danish National Health Service Register

Date and type of contacts with GP were collected from the National Health Service Register.

The Danish National Health Service Register is a data system available for counties and




                                                                                                   22
municipalities to manage the National Health Insurance covering primary health care providers.

The counties use the register for administrative purposes, especially for the settling of accounts

with providers. The register contains data on all citizens, providers, and health care services

reimbursed by the health authorities.136



8.1.3.6. The registration of community nurse activity and the terminal declaration (TD)

Information on community nurse services at home as well as information on the TD was extracted

manually from administrative data files in each local municipal administration in the county.

Existence of some degree of misclassification in the registration system in the municipal

administration must be considered. Misclassification due to incomplete or erroneous registration in

the municipal administration was, however, likely to be non-differential with respect to the studied

variables and tends to be reduced by routinely conducted external auditing.

The next pages summarise the methods and results from the three studies. The pooled discussion of

the results in the papers is presented in section 9.3. More detail of the separate studies can be

obtained in Appendices 1-3.



8.2. Study I: Population-based study of death of patients with cancer: implications

for GPs



8.2.1. Study I: Patients

After initial description of place of death in the total cohort (n = 4,386) we excluded the population

living in nursing homes at the beginning of the observation period (3 months prior to death) and

patients moving to nursing homes during the last 3 months of life (Fig 1).




                                                                                                     23
 Residence
                                Home
                                Home                                  Nursing Home
                                                                      Nursing Home
 3 months prior
                                4208
                                 4208                                      178
                                                                           178
 to death
                                                      116


 Residence
                                Home
                                Home                                  Nursing Home
                                                                      Nursing Home
 at time
                                4092
                                 4092                                      294
                                                                           294
 of death
                                                    438       35
             34            1221          2399                            259


     Unknown
      Unknown                Dying at
                             Dying at              Dying in
                                                   Dying in             Dying in
                                                                        Dying in
   place of death
   place of death             Home
                              Home                 Hospital
                                                   Hospital           Nursing Home
                                                                      Nursing Home
         34
         34                   1221
                               1221                 2434
                                                     2434                  697
                                                                            697
        1%
        1%                    28 %
                               28 %                 55 %
                                                     55 %                 16 %
                                                                           16 %

  Fig 1 Place of death and change of residence during last three months of life for
  cancer patients (n=4386).




Thus the cohort used in the analysis were those with residence at home (n=4,092). The design was a

case-control design where cases were cancer patients dying in hospital. Cases comprised 2,399

patients dying in hospital and 438 patients dying in nursing homes plus 34 with unknown place of

death, in total 2,871 patients. Controls were 1,221 patients dying at home. The patients dying in

nursing homes in the analysis cohort were those in respite care, who could reasonably be considered

to die an institutional death (cases). Because of automatic deletion of records more than 5 years old,

the analysis was limited to deaths which occurred between 27 March 1997 and 31 December 1998.

This subgroup was, however, compatible with the total study group.




8.2.2. Study I: Data analysis

We estimated the odds ratio of dying in hospital by logistic regression models and calculated

95% confidence intervals (CIs). In the models we adjusted for potential confounding factors:




                                                                                                   24
type of cancer, duration of disease, severity of disease by number of ambulatory contacts,

gender, age, marital status, number of children, geographic area and citizenship. Primary cause

of death was categorised into six categories: four separate categories for the four most frequent

cancers (lung, breast, colon-rectum, prostate), one category for the haematological cancers (the

course of which is rapid and treatment intense), and one final category containing other cancers.

Age was categorised as 18-39, 40-65, 65+, and finally being married and having children were

dichotomised. We calculated survival time by subtracting date of diagnosis from date of death

and subsequently dichotomised the result (less than 1 month, more than 1 month). GP activities

were measured by number and type of contacts (surgery consultation, telephone consultation,

home visit and out-of-hour services in general practice co-operatives). Community nurse

activity was measured in a sub-analysis in the largest municipality (40% of total population),

and patients were dichotomised: with and without nurse contact. Time at home was calculated as

days not hospitalised from diagnosis to death, left censored at 90 days, i.e., days possible to

receive home visits. The home visit rate was calculated by the number of home visits divided by

time at home in the last 90 days before death (~risk time). A multivariate logistic model was

fitted using the rate of home visits along with previously identified predictors. Further, a

matched case-control study was conducted. Among cases (hospital death) we found the day of

admittance for the ultimate admission and matched this day among randomly chosen controls

(home death). The matching process allowed identification of 423 randomly selected cases with

a corresponding control in the analysed cohort. By this, we compared the ultimate period at

home for cases (hospital death) with matching controls (home death). We then adjusted for the

previous explored covariates. Finally, we described the population not receiving home visits. All

analyses were conducted using Stata 8 (StataCorp, College Station, TX, USA).




                                                                                                    25
8.2.3. Study I: Results

During the three-year study period, 4,386 adult patients (at least 18 years of age) died with

cancer as primary cause of death. Figure 1 shows the place of residence, the place of death and

migration patterns of cancer patients in the 3 months prior to death. In the total cohort only 28%

died at home, 55% died in hospitals, 16% in nursing homes and for one percent place of death

was unknown. Some 9% (438) were temporarily admitted to nursing home where they died.

             Table 1 shows characteristics of cases (death in hospital or nursing home) and

controls (death at home).




                                                                                                     26
Table 1. Characteristics of cases and controls in Study I



                                       Institutional death              Home death
                                              (cases)                    (controls)
                                             (N=2871)                    (N=1221)

Sex, number (%)
 Male                                    1490       (52)               655       (54)
 Female                                  1381       (48)               566       (46)
Age at death, number(%)
 18-39                                     35        (1)                12        (1)
 40-65                                    717       (25)               349       (29)
 >65                                     2119       (74)               860       (70)
Marital status, number (%)
 Married                                 1882       (66)               916       (75)
 Widowed, divorced or single              989       (34)               305       (25)
Children, number (%)
 0                                       1353       (47)               505       (41)
 1 or more                               1518       (53)               716       (59)
Primary cancer; number (%)
 Lung                                     609       (21)               277       (23)
 Colon-rectum                             273       (10)               133       (11)
 Breast                                   205        (7)               117       (10)
 Prostate                                 175        (6)                90        (7)
 Haematological                           109        (4)                20        (1)
 Others                                  1500       (52)               584       (48)
Time of diagnosis to death:
 ≥ 1 month                               2253       (78)              1117       (91)
 < 1 month                                618       (22)               104        (9)
Geographic area:
 Urban                                   2209       (77)               956       (78)
 Rural                                    662       (23)               265       (22)
Nationality:
 Danish                                  2850       (99)              1208       (99)
 Other                                     21        (1)                13        (1)




In the univariate analyses we found a higher proportion of women than men dying at home in

the 40-65 year age group. Being married and having children made it less likely to die in

hospital, while we found no association with geographic locations. On the other hand, we found




                                                                                                 27
general practitioner home visit and visits by community nurse to be strongly inversely

associated with hospital death and we found an association between patients dying in hospital

and short survival time as well as patients with haematological cancer. We examined the

association of these variables in an adjusted multiple logistic regression model (Table 2).




                                                                                                28
Table 2. Associations with hospital death



                                            Crude                    Adjusted
                                      Odds ratio(95 % CI )      Odds ratio (95 % CI )


General practitioner:
 No home visits                       1.00                      1.00
 Home visits                          0.09 † (0.06 to 0.13)     0.08† (0.06 to 0.12)
Community nurse:
 No contact                           1.00                      1.00
 Contact                              0.32† (0.24 to 0.42)      0.36† (0.26 to 0.48)
Sex:
 Male                                 1.00                      1.00
 Female                               0.96 (0.81 to 1.15)       0.92 (0.74 to 1.14)
Age at death(years):
 18-39                                0.98 (0.45 to 2.17)       0.61 (0.24 to 1.52)
 40-65                                0.86 (0.70 to 1.04)       0.70† (0.56 to 0.90)
 >65                                  1.00                      1.00
Marital status:
 Single, divorced, widowed            1.00                      1.00
 Married                              0.65† (0.53 to 0.78)      0.68† (0.56 to 0.85)
No. of children:
 0                                    1.00                      1.00
 1 or more                            0.83 (0.69 to0.99)        0.86 (0.70 to1.06)
Primary cancer:
 Lung                                 0.87 (0.68 to1.09)        0.99 (0.77 to1.25)
 Colon/rectum                         0.78 (0.58 to 1.02)       0.79 (0.58 to 1.09)
 Breast                               0.66 (0.49 to 0.92)       0.73 (0.51 to 1.05)
 Prostate                             0.87 (0.62 to1.23)        1.04 (0.71 to 1.54)
 Haematological                       1.43 (0.81 to2.56)        1.35 (0.74 to 2.50)
 Others                               1.00                      1.00
Time of diagnosis to death:
 ≥ 1 month                            1.00                      1.00
 < 1 month                            2.94† (2.17 to 3.85)      2.27† (1.69 to 3.13)
Geographic area:
 Urban                                1.08 (0.87 to 1.32)       1.09 (0.87 to 1.35)
 Rural                                1.00                      1.00
(† p<0.05)


The strongest association was the general practitioner paying at least one home visit during the

last 3 months, but also community nurse visits had an impact. We then wanted to find out

whether GP home visit was solely a consequence of an acute need of care. To explore this, we



                                                                                                   29
made a separate analysis excluding all general practitioner services in the last 14 days. However,

the difference between the two groups declined but was still significant: 0.52 (0.43 to 0.63). To

find out whether the association persisted with another cut-off point, we analysed the last period

at home before last admission (for cases) in a matched case-control study, matched with date of

last admittance and adjusted for the previous explored covariates. In this analysis, we retrieved

the significant association: 0.22 (0.15 to 0.41) between GP home visit and place of death.

Finally, the home visit rate was a strong predictor of home death (Table 3), i.e. the odds of

hospital death consistently decreased with increasing rate of home visits by general practitioner.

In other words, by comparing patients with equal time at home, those with added GP home

visits will be more likely to die at home.



Table 3. Association of rate of GP home visits with hospital death




Rate of home visits              Crude                  Adjusted
   (per month)             Odds ratio (95%CI)       Odds ratio (95%CI)


0                          1.00                     1.00
0.1 - 0.5                  0.15 (0.10 to 0.23)      0.14 (0.09 to 0.21)
0.6 - 1                    0.12 (0.08 to 0.18)      0.11 (0.07 to 0.17)
1-2                        0.08 (0.05 to 0.11)      0.07 (0.05 to 1.00)
2-4                        0.06 (0.04 to 0.09)      0.06 (0.04 to 0.08)
>4                         0.05 (0.03 to 0.06)      0.05 (0.03 to 0.08)




                                                                                                     30
8.3. Study II:    Defining cancer patients as being in the terminal phase: who receives a

formal diagnosis and what are the effects?



8.3.1. Study II: Patients

The patient cohort in this study was 3,445 cancer patients from 18 municipalities ( Figure 2). Due to

incomplete or missing information we had to eliminate 13 small municipalities with a total of 941

cancer patients. However, those 941 patients were comparable to the rest of the cohort with regard

to age, gender, marital status, number of children and types of cancer.

Fig 2 Cohort of patients with cancer as primary cause of death


                               County of Funen
                              31 municipalities
                            471,989 inhabitants



                        Deceased patients 1996-98
                               N=16,580
                                                                     Other causes of death
                                                                            N=12,194

                    Cancer as primary cause of death
                                 N=4,386

                                                                          13 municipalities
                                                                              N=941

                             18 municipalities
                                 N=3,445



   Terminal diagnosis                                  No terminal diagnosis
      N=1,156                                                N=2,389
         34 %                                                 66 %




                                                                                                  31
8.3.2. Study II: Data analysis

We calculated the duration of the terminal declaration (TD). We could collect the exact date of

registration, also before the observation period of 3 months prior to date of death. We first used

the TD as a binary outcome variable, and hence estimated the odds ratio of TD by logistic

regression models and calculated 95% confidence intervals (CIs). In the models we adjusted for

potential confounding factors. Age could be a confounder because elderly people may delay

seeking medical advice if suspicion of cancer and analogous to this we assume they may also

delay seeking help in a terminal phase. Gender must also be considered a confounder because

of different health service utilisation by men and women, and type of cancer because different

types of cancer have distinctly different natural courses of disease. Being married and having

children are also possible confounders, because informal carers are able to ask for assistance and

support in the health care system. As expected, we found a dependency between the odds of TD

and week number before death, which we allowed for by including a separate constant for each

week on which the risk of TD could depend. In the second analysis, we estimated the rate of

admission to hospital for patients with a cancer diagnosis (a maximum of 12 weeks and

accounting only for the time period after diagnosis of cancer) by using TD as a binary covariate.

Finally, we analysed the risk of hospital death by logistic regression.



8.3.3. Study II: Results

For 34% of the patients in the total cohort (n = 3,445) the physician signed a terminal declaration

(TD) (Fig 2.). However, when survival time, i.e. time from cancer diagnosis until death, was less

than one month, only 8% received a TD. The declaration was signed 52 days (median, interquartile

range from 20 to105) before death with a mean of 100 days (95% CI: 91-110) (Table 4).




                                                                                                     32
Table 4. Characteristics of the study population in Study II.



                      No
                   Terminal      Terminal      Duration in days
                   diagnosis     diagnosis     (Median, interquartile range)

                   N            N
                  %            %
Sex:
  Female          1,103   66     563      34     56 (21,109)
  Male            1,186   67     593      33     47 (19,102)
Age at death:
  18-29             3     37       5      63     61 (11,90)
  30-39            15     48      16      52     96 (35,145)
  40-49            69     48      74      52     60 (24,110)
  50-59           203     50     200      50     67 (24,140)
  60-69           422     55     339      45     47 (21,92)
  70-79           790     70     334      30     52 (19,109)
  >=80            787     81     188      19     40 (15,90)
Married:
  Yes             1,470   64     836      36     52 (19,102)
  No               819    72     320      28     54 (21,107)
Children:
  0               1,221   74     422      26     50 (19,100)
  ≥1              1,068   59     734      41     54 (20,107)
Primary cancer:
  Colon-rectum     230    68     109      32     60 (22,99)
  Haematol.         95    89      12      11     32 (13,63)
  Breast           175    65      96      35     66 (23,155)
  Other           1,203   68     565      32     45 (18,101)
  Prostate         156    68      75      32     97 (41,219)
  Lung             430    59     299      40     49 (21,90)
Survival time:
  < 1 month        552    92      49       8     15 (8;36)
  ≥ 1 month       1,737   61   1,107      39     55 (21,107)
Total             2,289   66   1.156      34     52 (20,105)




       We found the probability of a TD to be significantly lower in age groups 70+ years, also

after eliminating patients living in nursing homes (n = 225). Female gender compared to male

gender and haematological cancers compared to “other” cancers showed significantly lower




                                                                                            33
probability of a TD while being married vs. single (widowed, divorced or not married), having

cancer of the prostate or the lung increased the probability of a TD (Table 5).

Table 5 The odds ratio of receiving a TD (terminal diagnosis)



                  Variable                    Odds Ratio                 95% CI

                Sex:
                  Female                         0.81                0.69 to      0,96
                  Male                            1
                Age at death:
                  18-29                          2.42                0.57 to 10.23
                  30-39                          1.46                0.71 to 3.01
                  40-49                          1.10                0.77 to 1.60
                  50-59                           1
                  60-69                          0.72                0.57 to      0.92
                  70-79                          0.44                0.34 to      0.56
                  ≥ 80                           0.24                0.18 to      0.32
                Married:
                  Yes                            1.20                1.01 to      1.44
                  No                              1
                Children:
                  0                               1
                  ≥1                             1.03                0.85 to      1.25
                Primary cancer:
                  Colon-rectum                   1.20                0.92 to      1.57
                  Haematological                 0.20                0.09 to      0.41
                  Breast                         1.08                0.79 to      1.46
                  Other                           1
                  Prostate                       2.14                1.55 to      2.96
                  Lung                           1.33                1.10 to      1.60
                Survival time
                  ≤ 1 month                      0.10                0.07 to      0.15
                  > 1 month                       1




       Looking at the patients (n = 619) with short survival time ≤ 1 month, we found the same age

distribution as in the total cohort. We found, however, significantly fewer cancers with a known

extended course, i.e. prostate and breast cancers. Looking at the effects of TD, we found that the

admission rate increased less with TD (Fig 3).



                                                                                               34
Fig.3. Effect of terminal diagnosis on admissions per week.




                            Admission per week
                          %

                            80
                                                                                     No terminal
                            60                                                       diagnosis
                            40
                                                                                     Terminal
                            20                                                       diagnosis
                             0
                                   -13 -11 -9        -7    -5 -3      -1

                                         Week number




       Interestingly, however, we found significantly longer admission time with TD (35.3 days vs.

30.2 days). In our cohort 56% (n = 1,935) died in hospital, 28% (n = 965) at home, 16% (n = 518)

in nursing home and 1% had unknown place of death. Hospital death was found in 65% (n = 1,487)

of cancer patients without TD, while only 39% (n = 448) of cancer patients with TD died in

hospital. With TD, the adjusted OR of hospital death was 0.25 (95% CI: 0.21-0.29).




8.4. Study III: Does persistent involvement by the GP improve palliative care at home for

     end stage cancer patients: Mortality follow-back design



In the first study, we found after careful considerations concerning alternative explanations that GPs

making home visits resulted in more cancer patients dying at home. In the second study, we found




                                                                                                   35
that the explicit terminal diagnosis in the form of a TD resulted in fewer hospital admissions and

more patients dying at home. We then wondered whether the effect of GP home visit was because

of the TD (the TD implies that the patient, the informal carer, community nurse and GP are aiming

for care at home) or whether the GP home visit has an effect on its own (Fig. 4)



Fig 4. Possible effects of GP home visit in end-of-life cancer care indicated by arrows



                      Effect of               Explicit           Effect of
    Cancer            GP visit?              terminal            GP visit?           Place of
    patient                                  diagnosis                                death
                                               (TD)




                                            Effect of
                                            GP visit?




8.4.1. Study III: Patients

The cohort used for analysis comprised those cancer patients who were living at home three months

prior to death ( n=2,025). We excluded patients living in nursing homes at the beginning of the

observational period as well as those moving to nursing home during the 3-month period prior to

death.



8.4.2. Study III: Data analysis

In the first analysis we used the terminal declaration (TD) as an intermediate outcome and GP

home visit in the last week before TD as exposure. We used a matched case-control study



                                                                                                  36
where cases were diagnosed cancer patients receiving a TD, and matched controls were

diagnosed cancer patients with same interval to death without having received a TD (yet). The

first matched pair analysis included 510 pairs. In all pairs, we eliminated the pair if either the

case or the control were in-hospital patient in the week before a TD. Then we repeated the

analysis with GP home visit in the last 4 weeks before a TD as exposure. The second analysis

included 652 matched pairs. By conditional logistic regression for matched case-control groups

we found the crude and adjusted odds ratio (OR) of home visit in the week immediately

preceding TD, and in the extended period of 4 weeks before TD. Finally, in order to examine the

unobserved confounding of individual frailty, we analysed the sub-populations of patients (40

pairs) receiving a TD very short time (1 week) before dying.

       In the second analysis we separated the data into two strata: patients with and without

TD. Main outcome was hospital death. We calculated the risk time, i.e. time at home (not

hospitalised and left censored at 90 days before death). In the TD stratum we found all GP home

visits after the date of TD. In the no TD stratum, we found all GP home visits in the risk time of

the last 30 days. Then, in both strata, we used the categorised (6 categories) home visit rate as

explanatory variable. Multivariate logistic models were fitted using the home visit rate as

predictor along with the previously identified predictors and hospital death as our main outcome

variable. We calculated the 95% confidence intervals (CI) for all estimates.



8.4.3. Study III: Results

A total of 2,025 patients died of cancer, 56% died in hospital, and 38% received a terminal

declaration (TD) (Table 6). The median age at death was 74 years (interquartile range: 64 to81).




                                                                                                     37
Table 6. Characteristics of 2025 terminal cancer patients stratified with respect to having
         received a terminal declaration ( + TD) or not (-TD).




                                + TD                                     - TD
                           N =774 (38 %)                           N =1251 (62 %)

                                     Hospital                                   Hospital
                                      death                                      death
                           N           %                          N               %

Sex
Female               375 (48 %)         35                    616 (49 %)           65
Male                 399 (52 %)         43                    635 (51 %)           68

Age at
death(years)
18-29                  4 (1%)            0                      3 (0%)             67
30-39                 12 (2%)           50                      6 (0%)            100
40-49                 51 (7%)           47                     34 (3%)             82
50-59                127 (16%)          50                    115 (9%)             79
60-69                218 (28%)          42                    223 (18%)            76
70-79                222 (29%)          38                    441 (35%)            72
80-                  140 (18%)          21                    429 (34%)            51

Married
Yes                  553 (38 %)         37                    780 (29%)            68
No                   221 (62 %)         40                    471 (71%)            64

Children
0                    285 (37 %)         31                    645 (52 %)           58
≥1                   489 (63 %)         43                    606 (48 %)           76

Primary cancer
Lung                 193    (25 %)      46                    223 (18 %)           74
Colon-rectum          71     (9 %)      34                     131(10 %)           66
Breast                61     (8 %)      34                      89 ( 7 %)          49
Prostate              55     (7 %)      31                      85 ( 7 %)          49
Haematological         7     (1 %)      43                      54 ( 4 %)          74
Others               387   (50 %)       38                    669 ( 53 %)          68




                                                                                              38
         We found a strong association between TD and GP home visit in the week preceding the

declaration (OR= 11.5, 95% CI: 6.0-24.6). Increasing the period before the TD to 4 weeks, we

found a weaker but still strong association to GP home visits (OR: 6.4 (4.5-9.2)). The association

was increased when we adjusted for patient characteristics, i.e. gender, age at death, marital status,

children and type of cancer. The association also existed in a subsample of patients (n = 80), who

received the TD one week or less before death (Table 7).




Table 7. Chance of getting a terminal declaration (TD) as a function of preceding GP home
visit analysed in matched case control design (652 pairs) by conditional logistic regression.
Cases received a TD and controls were selected among those who had not received a TD.



Period     Exposure period              Discordant pairs                Crude OR         Adjusted OR
for TD     for home visit                                               (95% CI)          (95% CI)

                             Cases visited /      Case unvisited /
                             control unvisited    control visited

3          1 week                    115                   10               11.5              16.8
months                                                                   (6.0-24.6)        (8.2-34.4)
           4 weeks                   218                   34                6.4               9.7
                                                                          (4.5-9.2)        (6.4-14.6)

1 week     1 week                    19                    3                 6.3
                                                                         (1.9-21.4)




                                                                                                   39
       To see whether we could find an effect of GP home visit despite TD, we stratified on TD in

the next series of analyses. In both strata we found GP home visit inversely associated with hospital

death, in TD stratum (OR: 0.18 (0.11-0.29)) and in no-TD stratum (OR: 0.08 (0.05-0.13). We also

found dose-response relationship in both strata (Table 8).



Table 8. Risk of dying in hospital in relation to GP home visits (+/- GP) among patients with
and without a terminal declaration (+/- TD)


                                  + TD                                     - TD



 GP home visits      N        OR (95%CI)        Hospital      N        OR (95% CI)        Hospital
   per week                                      death                                     death
                                                  %                                         %

   + GP visit       774     0.18 (0.11-0.29)       39        1251     0.08 (0.05-0.13)       66
  (0/1variable)


       0            160             1              78        591              1              92
    0.1-0.19        153     0.28 (0.17-0.47)       77        178      0.14 (0.09-0.20)       89
    0.2-0.39        116     0.11 (0.06-0.20)       48        211      0.14 (0.09-0.21)       51
    0.4-0.59        155     0.08 (0.04-0.13)       30        142      0.07 (0.05-0.11)       34
    0.6-1.49        155     0.09 (0.06-0.16)       26        109      0.09 (0.06-0.15)       43
      ≥1.5           31     0.07 (0.03-0.18)       12         20      0.10 (0.04-0.27)       40




                                                                                                  40
9.   DISCUSSION


The discussion is divided into three sections: Principal findings, methodological considerations i.e.

study design, study populations, data quality, confounding - interaction- effect modification and

choice of outcome measures. Finally, the results are discussed in relation to other studies.



9.1. Principal findings

The present studies from primary care show that GPs play a central role in management of end-

stage cancer patients. The studies also highlight the importance of making the switch from curative

to palliative focus explicit in end-of-life cancer care.


9.2. Methodological considerations

9.2.1. Choice of study design

Choice of study design will always be a balance between the most robust method and feasibility of

the method in the actual research area. In palliative care research there are important

methodological problems: One of the main barriers is the frailty of the patients involved.

Randomised, controlled trials (RCTs) generally considered to have a high level of evidence often

fail to report robust significant results in end-of-life studies. Attrition due to deterioration of the

condition, drop-outs and small sample size104,107 are well-known problems in palliative care research

which can hamper the conducting of RCTs. Besides, prediction of a patient death cannot be

precise,54 i.e., entry to a prospective study will introduce selection bias. Further, a randomised trial

in our studies would, apart from the mentioned problem of drop-outs, include a “no home visit” arm

or a “no terminal diagnosis” arm. That would restrain patients in the terminal phase from receiving

a GP home visit or the benefits from a terminal declaration which obvious would be unethical.




                                                                                                     41
             Methodological alternatives to randomised trials are prospective or retrospective

observational studies. Due to the above mentioned problem of prediction of death and absence of a

clearly defined starting point of terminal phase, prospective cohort studies are very difficult to

conduct, whilst the retrospective cohort designs, i.e. mortality follow-back studies might be more

convenient for analysing the last months of life. In mortality follow-back studies all healthcare

services can be examined for a defined period of time prior to death.116-120 The major problem with

this type of studies raised recently in JAMA is the absence of a clearly defined origin of the

terminal phase.121 However, with a clearly defined origin of terminal phase it is possible to mimic

an ordinary cohort study with respect to analysis and interpretation. From this perspective, the

Danish healthcare system offers unique opportunities to conduct valid mortality follow-back

studies. Not only are extensive data available for all cancer patients – including their date of use of

healthcare services – but the rather large group who receives a terminal declaration (TD) may

actually be viewed as a cohort of terminal cancer patients with reasonably well-defined origin of

their terminal phase.

             An important problem induced by the retrospective data collection is the left-

censoring, i.e., restricting the analysis to the last three months. We had to introduce left-censoring

(date of death minus 3 months) to get good data quality but as a consequence we cannot allow for

any events prior to the three months before death in our study. We did, however, find similar results

for those with a diagnosis less than three months before death and those with a diagnosis prior to the

three months before death.




                                                                                                    42
9.2.2 Study populations

In the studies we have minimised selection bias by analysing all cancer deaths in a well-defined

region and time period. We have included all patients dying with cancer as primary cause of death

and with residence in the County of Funen in 1996-98. We have thus also included patients who in

the last weeks and days of their lives were transferred to and dying in a hospital out of the county

(0.5%).

             In some of the analyses, we had to do with subpopulations. As a consequence of

routine removal of records more than 5 years old, the analysis of services provided in general

practice had to be limited to deaths which occurred between 27 March 1997 and 31 December

1998. This subgroup was, however, compatible with the total study group in relation to gender,

age, distribution of types of cancer, marital status and children. Further, in the analysis of

community nurse services and TD, we had as a result of incomplete or missing information to

eliminate 13 small municipalities with a total of 941 cancer patients. However, those 941

patients were not different from the rest of the cohort with regard to age, gender, marital status,

children and types of cancer.



9.2.3. Quality of data

We used one disease register, i.e. the Danish Cancer Register133,137 and four administrative registers.

By means of the personal identification number in the Civil Registration System we could conduct

accurate, individual-based linkage of information between the 5 registries in the studies.

             The disease register, the Danish Cancer Register, has since 1943 collected information

on all individuals in Denmark with cancer. The registration is based on notification forms that are

completed by hospital departments and general practitioners whenever a case of cancer is diagnosed




                                                                                                      43
or found at autopsy, and whenever there are changes in an initial diagnosis. By annual linkages to

the death certificate files the cause of death is noted. Unclear or contradictory information, either

within a notification form or between forms, leads to queries in approximately 10% of the

notifications received. Comprehensive evaluation has shown that the register is 95% to 99%

complete and valid.139,144,145

              The Danish National Discharge Register keeps records of nearly all (99%) the somatic

hospitalisations in Denmark since 1977. The administrative data in the register, i.e. admission date,

discharge dates and type of admission have been compared with the medical records of the source

hospital, finding an agreement of 98.5%.141

              The National Health Insurance has information on number of services given by all

GPs. The information is used for reimbursement for services provided in general practice. In

Denmark, most primary care is free of charge. General practitioners are self-employed but funded

through taxes in a mixed remuneration system with capitation fee and fee for service. Some 97% of

the population is listed with a GP. Due to the remuneration component of the registration the data

are likely to be complete and they are checked for errors by the county administration.

              Community nurse activity and information on TD were extracted from administrative

data files in the main municipality, Odense (approx. 189 000), and manually from the other

municipalities in the county. The munipalities receive 50% repayment from the county

administration if a patient with a TD receives care at home by a community nurse or receives

medication aid. Because of this remuneration practice (the same situation as with the general

practitioners) there will undoubtedly be a tendency to correct registration of services provided.

              Existence of misclassification in all the registries must, however, be considered

carefully. (Misclassification is the erroneous classification of an individual into a category other

than the one to which he/she should be assigned).            Misclassification due to erroneous




                                                                                                       44
registration in the municipal administration is likely to be non-differential with respect to the

studied variables and will in any case tend to be reduced by the routinely conducted external

auditing. Misclassification in the other registers is likely to be negligible due to the intense

validation process and non-differential with respect to the data used in the study.

             A more important question is whether a misclassification exists with respect to

classification of patients as terminal or not: We cannot be certain whether the patients under

study actually are in a clinically terminal phase, or whether they died in a potentially curative

phase during for example surgery or intensive chemotherapy treatment. If we have included

patients who were not in the terminal phase, we could not expect the healthcare system to have

mobilised for end-of-life cancer care. This would tend to weaken the association between GP

home visit and dying out of hospital. However, in the third study, this type of misclassification

is taken into consideration by using the TD: A patient provided with a TD consolidates that a

physician has diagnosed the patient terminal (with a life prognosis of less than 6 months), i.e.

there is a clear cut-of point (date) beyond which the patient has a terminal diagnosis.

       Misclassification might also occur when using the written declaration as a proxy for the

terminal diagnosis. Because the TD carries with it benefits around reimbursement for expenses

(medicine and equipment for home care) and especially paid leave for informal caregivers, it

may reflect more than simply the prognosis of the patients. For example, caregivers for the

elderly (who may be old-age pensioners themselves) are less likely to benefit from paid leave

from work. Although the declaration would have other advantages for such patients (and

patients without a caregiver) they might be less likely to receive a TD. The TD is, therefore,

most reliable as a proxy for a terminal diagnosis in patients with a positive TD. For patients

without a TD we cannot be sure that the physician did not make up his mind (i.e. diagnosing the

patient as terminal). The physician may have made an implicit diagnosis. The administrative




                                                                                                    45
work of signing the declaration or considering patients without need of financial support might

have held back the physician from signing a TD. Or, the physician might weigh up the

advantages against the disadvantages of confronting the patient and the family with a terminal

diagnosis. Studies have shed light on existence of this bias. Collusion in doctor-patient

communication might have acted as a mechanism of delayed TD,146 and GPs have been less

willing to diagnose patients as terminal compared with other doctors.147 From the patient’s

point-of-view, patient coping strategies constrained an information-seeking behaviour148

Especially patients, but also informal carers, wish to maintain hope.149           Consequently,

professionals may well have treated some of the patients without a TD as terminal patients. This

type of misclassification may lead to some degree of underestimation of the effects of the

terminal diagnosis. In another scenario, if the patient showed no sign of an approaching death

we would not expect the physician to sign a TD.121 However, when analysing patient

characteristics for receiving a TD, we analysed at the point of death and it must therefore be

assumed that terminal signs existed for most patients.In our analysis of the effects of terminal

diagnosis, we broke down the total follow-up period into shorter intervals of time (weeks) and

by this demonstrated an increasing effect as death approaches.



9.2.4. Confounding – interaction – effect modification

If we want to draw inference of our studies, it is essential to reflect alternative explanations like

confounding, interaction and effect modification.

             In our studies, by using the dates in the registers we could conduct careful time

analysis which fulfilled the absolute most important criterion of a causal relationship: that the

exposures of interest had taken place before the outcomes (temporal relationship). In all our studies,

the inter-relations of dates of admission and discharge from hospital, dates of GP home visits and




                                                                                                   46
date of TD were analysed. Further, time at risk, i.e. time possible (not hospitalised) to receive GP

home visit, was analysed. The analytical strategy employed was the use of GP home visit rates (the

number of home visits relative to time spent at home) as the primary exposure in the analysis of

place of death. It is worth mentioning that using home visit rates as exposure implicitly accounts for

varying lengths of patients time at risk. Our analysis identified the rate of home visits as a predictor

of place of death and showed a strong dose-response relationship with respect to place of death.

              In the studies we have adjusted for a series of observed confounders, i.e. age,

gender, type of cancer and proxies for informal carers (marital status and children). However,

those observed confounders only to some extent portrayed real life. In the three studies, some

potentially important, incompletely observed confounders have been discussed: 1) Inequality in

disease status and need of care in the comparison groups, 2) Patient factors as patients’

preference and awareness of an approaching death.

Re 1) Inequality in disease status and need of care:

In Study I, to make the groups more equal we eliminated all services the last 2 weeks of life in the

adjusted regression and in the matched case-control study, matching on the last period before the

last admission (of cases) and found, that the association persisted. In Study III, the matching was

done with respect to time to death (considering this the most relevant time scale due to severity of

the disease) and combined with adjusting for observed patient characteristics and in the last part

stratified on TD status. Concerned that this might not capture all relevant information of the

patient’s disease status and need of care, a sub-analysis using only those matched pairs, where the

TD was received less than one week before death (assuming that near death the patients were more

alike in the comparison groups) was performed. As expected this removed a significant portion of

the previously identified effect, which supported a suspicion of confounding by indication. But




                                                                                                     47
although diminished, the effect of GP home visits on the chance of receiving a TD remained very

strong and statistically significant, despite the small sample size available for this analysis.

              The most important analytic strategy was the second analysis in Study III, i.e.,

stratification on TD status. We found a strong, dose-response relationship in the TD group which

we assume must be more equal.

Re 2)      Patient factors as patients’ preference, committed spouse and awareness of an

approaching death:

In case of the patient’s capacity to influence the GP home visit whatsoever it was the patient

with very strong desire of a home death and/ or strong social network, i.e. a dedicated and

committed spouse (who understands the health system making it more likely that the GP was

called in appropriately). The results are interesting, since the established dose-response

relationship would seem to confirm the usefulness of GP visits for implementing such a wish.

              GP home visit is probably neither sufficient nor necessary for home death but there

might be a important relation. Exposure (GP home visit) occurred before outcome (temporal

relationship). A strong relationship (strength of association) was found and as the dose of

exposure (GP home visit’s) increased, the odds of home death also increased (dose-response

relationship). As cancer patients approach death one must assume that the need for care

increases (the rule of plausibility fulfilled). We have discussed alternative explanations

(confounding) and the consistency with other knowledge.

              However, GP home visit is undoubtedly not a single causal factor for cancer

patients’ place of death. The unobserved confounders mentioned: Patients’ preference for place

of death and informal carer’s support in home care might act as causes to prevent/ not prevent

end-of-life hospital admission, i.e. interaction (synergistic or antagonistic). Effect modifiers in




                                                                                                      48
this study will be factors that modify the effect of GP home visit and GP persistent involvement,

for example impractical housing conditions.



9.2.5. Using place of death as outcome measure - pros et cons

Place of death has been used as a suitable outcome measure in palliative care research for many

years and in many countries.10,11,13,15,18,150 Although we consider home death as advantageous, not

all cancer patients can or ought to die at home. Patients living alone, patients with no informal carer

or carers with no interest or no capability to cope with end-of-life home care are presumably better

cared for in hospital, hospice or nursing home. Further, although cancer patients stated that home is

the preferred place for dying,2,3,4,5 in some cases this preference fades slightly as death approaches.

Reasons have been found to be tacit protection of the informal carer, not to be a burden for the

family, terminal delirium, intractable pain or other unbearable symptoms resembling risk of

bleeding or fear of death. However, home is the predominantly preferable place of death, and dying

at home represents some of the key values in “quality of end-of-life cancer care”. Place of death as

outcome measure is therefore useful.


9.3 Discussion of the results in relation to other studies

Our findings that GP home visit and persistent involvement by the GP are associated with place

of death confirm our hypothesis that the GP seems to have various fundamental values in the

quality of end-of-life cancer care.

              Our results are, however, the first to show in an unselected population, that GP home

visit in the last weeks of end-stage cancer patients’ lives not only has an important impact on

elements of quality of end-of-life care, i.e. staying at home and dying at home, but that this impact

is largely independent of whether or not the patient received a formal terminal diagnosis. Further, it

is interesting that GP home visits appear to influence, first, the chance of receiving a TD, which in



                                                                                                    49
itself lowers the risk of dying in hospital, and, second, the risk of dying in hospital. This double

finding seems to suggest that persistent involvement by the GP has beneficial consequences for end-

stage cancer patients on multiple levels.

        Undoubtedly, a complicated network of factors affect place of death of cancer patients.

Homecare, home visits, patients’ preference, living with relatives, extended family support and

caregivers’ preference were the most important factors in a recent review in BMJ.160 These findings

do not contradict our results. We confirmed previous studies, which have demonstrated that patients

with haematological cancer are more likely to die in hospital.12,13,161,162

        In Study II, a smaller number of female and elderly cancer patients received the formal

terminal diagnosis and TD was associated with fewer hospital admissions and increased

possibilities of dying at home. To our knowledge, this is one of the first studies in an unselected

population of cancer patients to highlight the very difficult transition from curative to palliative

focus in end-of life cancer care. Hospice referral or referral to a specialised palliative home care

programme (which could be used as a marker of that switch) often implies more intensive palliative

treatment. In North America the average patient stays less than 3 weeks in a hospice before dying.
163
      A diagnosis of “terminal stage” can often be made earlier and the median period of survival

after receiving a TD was in our study more than double as long (52 days). It is important to

emphasize that the TD does not change the patients overall rights in the Danish healthcare system

and the patient does, for example, not relinquish any acute care benefits as a consequence. In

contrast, referral to a hospice in US may change the healthcare access for patient and family in the

US Medicare program and this may have an influence on the timing of hospice admission.119 This

influence of the healthcare system has recently been discussed in an editorial and an article based on

our study.164,165 Many patients are not in need of intensive terminal care when they receive the TD.




                                                                                                   50
But what is very important, the TD gears the healthcare system towards palliative care which might

ensure cancer patients’ sufficient symptom control and sufficient support to informal carer.64,67

       In our study we found that fewer female and fewer elderly cancer patients received TD, even

after adjusting for important confounders. The gender difference could be explained by the fact that

women are still the primary caregivers in the family and hence are more proactive getting the

services needed for their spouse. That elderly patients were less likely to get terminal declaration

may partially be explained by the hypothesis that elderly cancer patients are more reluctant to

contact healthcare services. A relationship is observed between increasing age and advanced stage

of the disease at time of diagnosis.166 From a healthcare service point-of-view, elderly patients

(65+) may, however, also be less likely to receive cancer-related treatment116 and physicians tend to

under-treat pain in older patients.167 The elderly were also found to suffer delays in accessing

terminal benefits168 and hospice referral71 which corresponds well with our results. As expected,

short survival time, i.e. time from cancer diagnosis until death, was found to reduce the proportion

receiving a terminal declaration. Aggressive progression of the disease provides a reduced amount

of time for the physician to detect a beginning terminal phase.




                                                                                                    51
10.    CONCLUSIONS



      1.

      Dying at home rather than at hospital was associated with GP visit and, to a lesser extent,

      community nurse visits. Clinical and socio-demographic characteristics of cancer patients only

      showed weak associations to home death.



      2.

      Women and the elderly were less likely to receive a formal terminal diagnosis (TD). The

      formal terminal diagnosis reduced hospital admissions and increased the possibilities of dying

      at home.



      3.

      Persistent involvement by the GP is associated with increased possibilities of dying at home.

      Provided that the time dimension is considered, the mortality follow-back design can be a

      suitable and an ethical research method to highlight and monitor end-of-life cancer care.




                                                                                                    52
11.     PERSPECTIVES



11.1.    Healthcare

For the healthcare providers, our studies show the importance of making the terminal diagnosis

explicit. It is not surprising that an explicit terminal diagnosis facilitates planning of palliative care

and thus has an effect on end-of-life care. However, only one third of the patients in our study

received a terminal declaration. The late recognition of an approaching death might not allow

healthcare professionals time to discuss feasibility of care and death at home.           What is more

important is that our results shed further light on the probably insufficient services to some

subgroups of end-stage cancer patients. Further studies and initiatives should focus on these groups

to facilitate the necessary access to palliative care services.

              The future challenge might be a more differentiated triage of patients with palliative

care needs. It is remarkable in the present studies that even among patients receiving a TD (where

the vast majority might be expected to desire death at home) the importance of involvement by the

GP is very strong, suggesting that future research should focus on the organisation of the daily GP

workload in order to support the GP in incorporating end-of-life cancer care in daily practice. Such

organisational initiatives could include financial support in terms of improved pay to GPs

conducting home visits or guaranteeing access to sufficient supervision and facilities in daily GP

work.



11.2.    Future research

Our quantitative studies have generated research questions that demand other research methods

to clarify the influence of the GP in end-of-life cancer care. A future study with in-depth

analysis of the GP in the context of home-based palliative care is planned. In organisational




                                                                                                       53
research, studies may identify barriers for GP home visits in end-stage cancer care and studies

may focus on the organisation of the daily GP workload in order to support the GP in

incorporating end-of-life cancer care in daily practice.

              The results based on registers cannot elucidate mechanisms in doctor-patient

communication or mechanisms in patient or doctor inner life. However, provided that the time

dimension is analysed, the mortality follow-back design can be a suitable and an ethical research

method to highlight problems and monitor quality in end-of-life cancer care.




                                                                                                    54
12. SUMMARIES

12.1.   Dansk resume [Danish summary]

Ph.d. afhandlingen består af en oversigt og tre originalarbejder. Afhandlingen udgår fra

Forskningsenheden for Almen Praksis i Odense, Syddansk Universitet.

Baggrund

At tilbringe så megen tid som muligt i eget hjem og om muligt at dø hjemme er af stor betydning

for terminalt syge kræftpatienter og deres familier. Imidlertid dør betydeligt færre end ønsket i eget

hjem i de fleste vestlige lande. Det er uklart, hvilke faktorer der har indflydelse på kræftpatienters

dødssted. Der er specielt mangel på befolkningsanalyser af primærsektorens indflydelse, dvs. af

praktiserende lægers og hjemmesygeplejens rolle.            Læger får ofte enten ikke defineret

kræftpatienter som værende i terminalstadie, eller deres prognostiske estimater kan være for

optimistiske. Dette kan antages at have betydning for forberedelse til eventuel hjemmedød, rettidig

sufficient smertebehandling, aflastning af pårørende og for, at patienter i tide kan blive henvist til

palliativ specialistbistand.

Formål

Afhandlingens formål var at identificere betydende faktorer for kræftpatienters dødssted. Der er lagt

særlig vægt på praktiserende lægers involvering ved sygebesøg og på effekten af terminal erklæring

(TD).

Metode

Designet var et retrospektivt befolkningsstudie af sundhedsydelser i de sidste tre måneder af livet til

patienter i Fyns Amt hos hvem kræft var primær dødsårsag i 1996-98. Patienterne blev via CPR-

registret identificeret i Cancerregistret og information om sundhedsydelser blev koblet med

oplysninger fra Landspatientregistret, Sygesikringsregistret og registreringer af terminal erklæring

(TD) og hjemmesygepleje i de enkelte kommuner.




                                                                                                    55
Resultater

I den 3-årige studieperiode, døde 4,386 voksne patienter (18 år eller over) med kræft som primær

dødsårsag. I alt 28% døde hjemme, 55% på hospital, 16% på plejehjem (ni procent under

aflastningsophold) og 1% havde ukendt dødssted. Vi fandt en stærk sammenhæng mellem

hjemmedød og den praktiserende læges sygebesøg samt hjemmeplejens besøg. At være gift og have

børn på dødstidspunktet var associeret med hjemmedød, mens vi ikke fandt forskel mellem land og

by. Kort overlevelsestid fra diagnose til død og hæmatologisk kræftsygdom var associeret med død

på hospital.

               Terminalerklæring blev udstedt til 34% af kræftpatienterne gennemsnitligt 52 dage før

død. Når overlevelsestiden fra diagnose til død var under en måned, blev der kun udstedt

terminalerklæring til 8%. Udstedelse af terminalerklæring var hyppigere til gifte og patienter med

visse kræftsygdomme (prostata og lunge). Endvidere var udstedelsen omvendt associeret med alder

over 70 år, kvindekøn og hæmatologisk kræftsygdom. Vi fandt signifikant nedsat indlæggelsesrate

efter udstedelse af terminalerklæring og risikoen for hospitalsdød var kun 25%. Vi fandt stærk

association mellem udstedelse af terminalerklæring og praktiserende lægers sygebesøg i ugen inden,

men også 4 uger før. Desuden var der en kraftig dosis-respons sammenhæng mellem praktiserende

læges sygebesøg og dødssted både hos patienter med og uden terminalerklæring.

               En del af sammenhængen mellem sygebesøg og dødssted kan naturligvis skyldes, at

patienter, der dør hjemme, er mere tilgængelige for sygebesøg end patienter, som er indlagt. Vi

valgte imidlertid at anvende en sygebesøgsrate (sygebesøg/risikotid i hjemmet) som variabel i de

logistiske regressioner. Sammenhængen fandtes endvidere i en række delanalyser:

1) delstudie, som ikke inddrog de sidste 14 levedage, hvor det må antages, at der i højere grad kan

opstå et ikke-planlagt akut behov for lægehjælp (ikke nødvendigvis et udtryk for, at lægen har valgt

et aktivt engagement)




                                                                                                 56
2) matchet case-controlstudie, hvor observationsperioden var tiden forud for sidste indlæggelse før

død

3) matchet case-controlstudie, hvor patienterne var sammenlignelige med hensyn til terminal

erklæring

Studierne taler for, at kræftpatienters mulighed for at få en terminal erklæring og for at dø i eget

hjem øges, når den praktiserende læge er involveret med sygebesøg (uanset patientens alder, køn,

kræfttype, samboende ægtefælle eller hvorvidt, der er børn).



Konklusion og perspektiver

Resultaterne tyder på, at det er væsentligt for den palliative indsats, at den praktiserende læge er

involveret og at den terminale diagnose gøres eksplicit ved en terminalerklæring. Disse fund kræver

bekræftelse fra studier, hvor patientens behov og præferencer inddrages mere dybtgående, end det

er muligt med registerdata.

              Under nøje hensynstagen til den rette tidsmæssige sammenhæng kan det retrospektive

design af leverede sundhedsydelser være en brugbar og etisk metode til at undersøge og monitorere

den palliative indsats.




                                                                                                 57
12.2. English summary

This PhD thesis is based on an overview and three original papers. The studies were carried out at

the Research Unit for General Practice, University of Southern Denmark, Odense.



Background

Dying at home and remaining at home as long as possible are of great importance to a majority

of seriously ill cancer patients and their families. However, only a minority of patients actually

die at home in most Western countries. Factors influencing place of death of cancer patients are

not fully understood. There is, especially, a lack of assessment of the influence of non-

specialised community services, i.e. GP and community nurse services in an unselected

population of cancer patients.

Physicians do either not define cancer patients as being terminal or their prognostic estimates tend

to be optimistic. This might affect preparation for home death and patients’ appropriate and timely

referral to specialist palliative care services and can lead to unintended acute hospitalisation.

Objectives

The purpose of the thesis was to find factors of importance for place of death in unselected

populations of patients dying from cancer. Special emphasis was on the effect of GP home visit and

on the effect of a formal terminal diagnosis.

Methods

The design was a mortality follow-back study of health services the last three month of life applied

to all patients with cancer as primary cause of death in the study period 1996-98 in the County of

Funen. Patients were identified in the Danish Cancer Register, and the health services provided

were collected from the Danish National Hospital Register, the Danish National Health Service




                                                                                                     58
Register and the registration of community nurse activity and formal terminal declaration (TD) in

the municipal administrations.



Results

In the 3-year study period, 4,386 adult patients (aged at least 18 years of age) died with cancer

considered the primary cause of death. In the total cohort 28% died at home, 55% died in hospitals,

16% in nursing homes (nine percent on a temporary stay) and for one percent place of death was

unknown. Being married and having children made it less likely to die in hospital. GP home visit so

as visits by community nurse were found to be strongly inversely associated with hospital death

while no association was found with geographical location. Short survival time and haematological

cancer were associated with hospital death.

              For 34% of the patients a terminal declaration (TD) was issued. However, when

survival time, i.e. time from cancer diagnosis until death, was less than one month, only 8%

received a TD. The declaration was issued 52 days before death. The TD was associated with being

married, having cancer of the prostate or the lung and was inversely associated with 70+ years,

female gender and haematological cancer. Looking at the effects of TD, with TD the admission rate

increased less and the risk of hospital death was 25%. A strong association between issue of TD and

GP home visit in the week before TD, but also 4 weeks before the TD, was found. Furthermore a

strong dose-response relationship was found between GP home visit and non-hospital death both

among patients with TD and patients without TD.

              Some of the association between GP home visit and place of death could of course

relate to patients dying at home being more accessible to GP home visit than patients admitted.

However, we used a home visit rate i.e. home visit / risk time at home as explanatory variable in the

logistic regressions.




                                                                                                  59
Futhermore, the association was found in several subanalysis:

     1) The association persisted eliminating all services the last 2 weeks in the adjusted

         regression (in the last 2 weeks a no-planned acute need for physician assistance is more

         likely which is not necessarily a marker for GP involvement.)

     2) The association persisted in a matched case-control study, matching according to the time

         period before the last admission

     3) The association persisted in the subpopulation of patients receiving a TD.

The studies indicate that cancer patients’ possibility of getting a TD and of dying at home increases

when the GP involves himself, e.g. home visits ( irrespective of the patient’s age, gender, cancer

type, marital status or whether or not the have children.



Conclusion and perspectives

In summary, this population-based study points to two important factors in palliative care in the

community, i.e. the importance of persistent involvement by the GP in end-of-life cancer care and

the effect of making the terminal diagnosis explicit .

              These studies need to be confirmed by more profound studies of patients’ desires and

preferences in end-of-life cancer care than possible with register-based data. Provisional

perspectives could be to ensure, that GP’s are involved in organisation of palliative care and if

possible, a terminal declaration is made explicit.

              Provided that correct temporal relations are used, the mortality follow-back design can

be a suitable and an ethical research method to highlight and monitor end-of-life cancer care.




                                                                                                  60
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      14      APPENDICES




14.1. Paper I –III




I.         Population-based study of death of patients with cancer: implications
           for GPs. Br J Gen Pract 2005; 55: 684-9.




II.        Defining cancer patients as being in the terminal phase: who receives a
           formal diagnosis and what are the effects? J Clin Oncol 2005; 23: 7411-6.




III.       Does persistent involvement by the GP improve palliative care at home
           for end-stage cancer patients? Palliative Medicine 2006; 20: 507-12.




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