Factors of importance for organising palliative care at home
Register-based population studies of end-stage cancer patients
Research Unit for General Practice, Institute of Public Health
Faculty of Health Sciences
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.
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
2 TABLE OF CONTENTS
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
126.96.36.199 Defining cancer patients as terminal? 13
188.8.131.52. The terminal declaration (TD) 14
184.108.40.206. 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
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
220.127.116.11. Danish Civil Registration System 21
18.104.22.168. The Danish Cancer Register 21
22.214.171.124. The Danish National Hospital Register 22
126.96.36.199. The Danish Register of Causes of Death 22
188.8.131.52. The Danish National Health Service Register 22
184.108.40.206. 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
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.
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
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.
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
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.
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
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
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
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”
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.
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
conducted by health care services with palliative care as their core specialty”
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
220.127.116.11. 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,
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
18.104.22.168. The terminal declaration (TD)
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
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.
22.214.171.124. 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.
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
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
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
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.
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
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
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
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
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.
126.96.36.199. 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.
188.8.131.52. 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
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
184.108.40.206. 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.
220.127.116.11. 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
18.104.22.168. 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
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
22.214.171.124. 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
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).
Home Nursing Home
3 months prior
Home Nursing Home
34 1221 2399 259
Unknown Dying at
Dying at Dying in
Dying in Dying in
place of death
place of death Home
Hospital Nursing Home
1% 28 %
28 % 55 %
55 % 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:
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).
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).
Table 1. Characteristics of cases and controls in Study I
Institutional death Home death
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)
Urban 2209 (77) 956 (78)
Rural 662 (23) 265 (22)
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
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).
Table 2. Associations with hospital death
Odds ratio(95 % CI ) Odds ratio (95 % CI )
No home visits 1.00 1.00
Home visits 0.09 † (0.06 to 0.13) 0.08† (0.06 to 0.12)
No contact 1.00 1.00
Contact 0.32† (0.24 to 0.42) 0.36† (0.26 to 0.48)
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
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)
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)
Urban 1.08 (0.87 to 1.32) 1.09 (0.87 to 1.35)
Rural 1.00 1.00
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
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)
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
Deceased patients 1996-98
Other causes of death
Cancer as primary cause of death
Terminal diagnosis No terminal diagnosis
34 % 66 %
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).
Table 4. Characteristics of the study population in Study II.
Terminal Terminal Duration in days
diagnosis diagnosis (Median, interquartile range)
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)
Yes 1,470 64 836 36 52 (19,102)
No 819 72 320 28 54 (21,107)
0 1,221 74 422 26 50 (19,100)
≥1 1,068 59 734 41 54 (20,107)
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)
< 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
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
Female 0.81 0.69 to 0,96
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
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
Yes 1.20 1.01 to 1.44
≥1 1.03 0.85 to 1.25
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
Prostate 2.14 1.55 to 2.96
Lung 1.33 1.10 to 1.60
≤ 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).
Fig.3. Effect of terminal diagnosis on admissions per week.
Admission per week
-13 -11 -9 -7 -5 -3 -1
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
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
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
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
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).
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 %)
N % N %
Female 375 (48 %) 35 616 (49 %) 65
Male 399 (52 %) 43 635 (51 %) 68
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
Yes 553 (38 %) 37 780 (29%) 68
No 221 (62 %) 40 471 (71%) 64
0 285 (37 %) 31 645 (52 %) 58
≥1 489 (63 %) 43 606 (48 %) 76
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
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
1 week 1 week 19 3 6.3
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
0 160 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
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.
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.
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
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
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
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
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
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
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
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
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
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.
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.
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.
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.
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
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.
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
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
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.
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.
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
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
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.
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
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)
2) matchet case-controlstudie, hvor observationsperioden var tiden forud for sidste indlæggelse før
3) matchet case-controlstudie, hvor patienterne var sammenlignelige med hensyn til terminal
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.
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.
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.
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.
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
Register and the registration of community nurse activity and formal terminal declaration (TD) in
the municipal administrations.
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
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.
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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.