Defining the palliative care patient. A systematic review.

Van Mechelen Wouter M.D.(a), Aertgeerts Bert M.D. Ph.D.(a), De Ceulaer Karolien M.D.(a),
Thoonsen Bregje M.D.(b), Vermandere Mieke M.D.(a), Warmenhoven Franca M.D.(b), Van
Rijswijk Eric M.D. Ph.D.(b), De Lepeleire Jan M.D. Ph.D.(a)

(a) Academic Center for General Practice, K.U.Leuven, Belgium

(b) Radboud University Nijmegen, the Netherlands

Wouter VAN MECHELEN M.D. (Corresponding Author)

Research Assistant
Kapucijnenvoer 33 blok J bus 7001
3000 Leuven
Telephone: (+32) 16 – 337536
Fax: (+32) 16 - 337480
Wouter.VanMechelen@med.kuleuven.be

Bert AERTGEERTS M.D. Ph.D.

Professor
Kapucijnenvoer 33 blok J bus 7001
3000 Leuven
Telephone: (+32) 16 - 337481
Bert.Aertgeerts@med.kuleuven.be

Jan DE LEPELEIRE M.D. Ph.D.

Professor
Kapucijnenvoer 33 blok J bus 7001
3000 Leuven
Telephone: (+32) 16 - 332827
Jan.DeLepeleire@med.kuleuven.be
Defining the palliative care patient. A systematic review.

ABSTRACT

Background: The lack of a clear definition of the palliative care patient hampers the comparison of

results across different studies and impedes implementation of research findings in everyday

practice. Aim: To propose minimum characteristics that define a palliative care patient. Design:

Systematic review of medical literature searching randomized controlled trials (RCTs) in palliative

care for clear descriptions of their palliative care patients. We systematically describe relevant

characteristics of the study populations of 60 eligible RCTs. Data sources: MEDLINE, EMBASE,

CINAHL, and PSYCHINFO including all non-cancer RCTs

(1 January 1995 - 4 March 2010) and an equivalent number of the most recent cancer RCTs

(1 January 2003 – 4 March 2010). Results: Half of the non-cancer studies were excluded because

they did not relate to palliative care. We conclude that published RCTs have no clear definitions of

their palliative care patients and illustrate the diversity of this patient, the lack of consensus

concerning the attributes of illnesses needing palliation and the ambiguous use of the adjective

‘palliative’. Conclusions: We propose elements of patients’ health status (e.g. a progressive, life-

threatening disease with no possibility of obtaining remission or stabilization, or modifying the

course of the illness) and the care delivered to them (e.g. a holistic interdisciplinary approach that

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focuses supporting the quality of the end-of-life) to be included in the definition of a palliative care

patient. We also suggest considering patients’ readiness to accept palliative care and a vision of

palliative care shared by the patient and all caregivers involved as potentially important elements

in this definition.

Keywords: palliative care patient, terminal care patient, definition

Mesh terms: palliative care, terminal care, review, randomized controlled trial

INTRODUCTION

Research in the domain of palliative care has grown significantly in recent decades. Nevertheless,

the description of this patient population remains vague. In the WHO definitions of palliative care,

the patient is only defined as having a disease that is not responsive to curative treatment (WHO

1990) or a disease that is life-threatening (WHO 2002).(1) In palliative care research, different

studies have different criteria for including patients in their study population(2-4) and in clinical

practice and health policy palliative care patients have also been defined in many different ways.(4)

The lack of consensus among health care professionals about the stage of life addressed by

palliative care is a plausible explanation for this vague description.(5) Moreover, in a concept

analysis Meghani articulate that palliative care, as a dynamic concept, has gained new meaning

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and significance over time, which has resulted in new models and related concepts such as

preterminal care, terminal care and end-of-life care.(6) Nevertheless, in everyday practice,

palliative care is frequently introduced at a later stage in a life-threatening disease, thereby

defining itself as care given to a terminally ill patient.(4) The use of palliative care as synonymous

with end-of-life care or terminal care has, however, created confusion regarding the exact content

of the various concepts, the stage of life to which these concepts refer and the patients for whom

they may be appropriate.

Secondly, there have been important changes in the patient population receiving palliative care.

Whereas two decades ago palliative care was mainly confined to the treatment of pain and other

symptoms caused by cancer, patients with deteriorating chronic diseases such as chronic heart

failure, chronic obstructive pulmonary disease, and cognitive impairment, now receive more

attention.(1;4)

Many authors define their study populations differently, giving rise to this heterogeneous view of

palliative care as a concept and its target population.(2;3;7-10) Inclusion criteria often refer to

characteristics of the patients’ disease (e.g. a progressive, life-threatening illness) or clinical

indicators of advanced disease, such as weight loss or oxygen dependency. Other commonly used

inclusion criteria are the patients’ choice of non-curative treatment, indicators of an increased

need for palliative care such as multiple hospital admissions, or a high level of dependency. In

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addition, authors frequently combine previous criteria with the ‘surprise question’: “Would you be

surprised if the patient were to die during the next year?”, which integrates co-morbidity, social,

and other factors into prognostication.(9;11;12)

However, Borgsteede et al. highlight the limitations of using varying inclusion criteria in palliative

care research by showing substantial differences in palliative care patient populations selected

according to these different inclusion criteria.(13) The potential bias imposed by chosen inclusion

criteria on population characteristics, and therefore on outcomes, confirms the need for

internationally agreed criteria to define the palliative and terminal care patient. This would reduce

heterogeneity between different studies and facilitate comparison of results across studies.

A recent report by the Belgian Health Care Knowledge Center concerning the organization of

palliative care in Belgium confirms the absence of a consensus on the definition of a palliative care

patient. Keirse et al. concluded that while palliative care is extensively described, the palliative

care patient is not, and the definitions used vary depending on their purpose,(4) as confirmed in a

recent discourse analysis of palliative care definitions by Pastrana et al.(3)

Since a systematic review of the literature on the definition of a palliative care patient is non-

existent, we formulated the assumption that peer-reviewed randomized controlled trials (RCTs) in

palliative care research would have clear descriptions of their palliative care patient populations.

The aim of the study was to systematically search for relevant characteristics of the study

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population in these RCTs as a starting point for proposing minimal criteria for a definition of a

palliative and terminal care patient. We differentiated between palliative care and terminal care

populations and we paid attention to the growing proportion of non-cancer patients receiving

palliative care.

METHODS

Literature search

We conducted a search in four databases: MEDLINE (1947+), EMBASE (1947+), CINAHL (1937+)

and PSYCINFO (1806+), using search terms (‘palliative care’, ‘palliative therapy’, ‘terminal care’,

‘terminally ill’, ‘terminally ill patients’, ‘death and dying’) as illustrated in table 1. All search terms

were specified as major topics and the searches were restricted to randomized controlled trials

and adult study populations (19 years or older).

For two reasons we divided the literature search into two arms: one dealing with palliative care

RCTs and a second focusing on terminal care RCTs. The first reason is the frequent use of the

concept “terminal care” in daily practice and its potential confusion with the concept “palliative

care”. The second reason is the importance of recognizing a transition from palliative care to

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terminal care. Using this search strategy we hope to find characteristics other than “evident”

prognostic ones to describe a palliative or a terminal care patient since it is well known that

physicians are not good at prognostication.(4;14)

Our search was updated to 4 March 2010. All studies were inserted in Reference Manager 12 and

duplicate studies were excluded. Duplicate studies in different study arms of our literature search

were allocated to the appropriate study arm by two independent reviewers (WVM, KDC), defining

terminal care as the comprehensive care during the last days of illness. A third reviewer (BA) made

the decision in cases of unresolved disagreement.

The RCTs included had to focus on interventions and/or outcomes for the palliative or terminal

care patient or his family, and were rejected if they did not focus on palliative or terminal care.

Other exclusion criteria were non-human research, a non-Western language, a missing abstract or

a missing study design.

Selection by title and abstract

An early evaluation of the literature revealed the clear predominance of cancer-related trials in

both study arms. We therefore made a selection of the RCTs to obtain a more representative view

of the different research populations. Also, since the shift in the WHO definition of palliative care

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in 2002, we assumed that most adapted definitions of a palliative care patient would be found in

most of the recent literature.(1) Consequently, after reading the title and abstract, all non-cancer

trials and an equivalent number of the most recent cancer trials were selected in each study arm,

resulting in four different groups: group A (palliative care, non-cancer), group B (palliative care,

cancer), group C (terminal care, non-cancer) and group D (terminal care, cancer).

All articles selected for inclusion were screened by reading their full text version, and a second

selection was made based on the inclusion and exclusion criteria as described above. Duplicate

studies in the same part of our literature search were excluded.

Data analysis

In order to choose relevant characteristics to define a palliative care patient, we focused on key

features that occur in different types of definitions of a palliative care patient or palliative care. (1-
4;6-10)
We selected six important characteristics: diagnosis, disease progression, life expectancy of

the study population and clinical setting, intervention, outcome of the studies included. Based on

a discussion with co-authors on ten randomly chosen RCTs (cancer and non-cancer) we listed the

most relevant descriptions for each characteristic selected and added an identification number

(see appendix 1 in the online version of the article).

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Using this framework, all the studies included were read carefully by two independent reviewers

(WVM, KDC), focusing on the description of the study population and the inclusion and exclusion

criteria used. For each RCT the six characteristics were identified and given the corresponding

identification number as determined in the framework (for a quantitative description of these

patient-related characteristics in the four groups of RCTs see appendix 2 in the online version of

the article). Finally, we analyzed the distribution of the identification numbers for each

characteristic. All operations were performed in Microsoft Excel.

Fisher’s exact tests and exact Mann-Whitney U test were used respectively to compare

proportions and continuous variables between the four trial groups. Analyses were performed

using the statistical package StatXact-9.

RESULTS

Literature Search

In MEDLINE we identified 333 palliative care trials and 75 terminal care trials. In EMBASE we found

112 and 16 studies respectively. No appropriate palliative care studies were found in CINAHL and

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PSYCINFO. We did, however, identify one and two terminal care studies respectively, resulting in a

total of 445 potentially relevant palliative care trials and 94 potentially terminal care trials.

Selection by title and abstract

Figure 1 shows a flow diagram of the literature selection as described above. Ultimately 60 RCTs

were included in this review (for a qualitative description of the included RCTs see appendix 3 in

the online version of the article). Over 80% of the RCTs included were published in the last five

years. All cancer trials were published after 2002.

Almost half (49%) of the non-cancer studies (n=172, palliative care and terminal care arms

combined) were excluded because the trials did not refer to palliative or terminal care. The study

populations suffered from endometriosis, osteoarthritis, bullous keratopathy, HIV, lower back

pain, diabetic polyneuropathy etc.: essentially pathologies with no curative treatment options.

Nine duplicate studies were noted between the palliative care and the terminal care arm. Three

duplicate cancer studies were allocated to the palliative care arm (group B). Five duplicate non-

cancer studies were allocated to the palliative care arm (group A). Only one duplicate non-cancer

study was allocated to the terminal care arm (group C).

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Data analysis

Patients' disease

We identified 12 different pathologies in our selected studies (n=60), of which cancer, organ

failure, dementia, and frailty were most commonly represented (see figure 2). When analysing by

patients' disease we frequently found more than one population per RCT. As a consequence we

identified a total of 96 populations. 54 populations (56.3%) were diagnosed with cancer, 11

populations (11.5%) with organ failure, three with frailty (3.1%), and an equal number with

dementia (3.1%). We identified 16 populations (16.7%) with other pathologies (multiple sclerosis

and other neurodegenerative disorders, amyloidosis, AIDS and stroke). In nine RCTs (15.0%) the

disease was not mentioned. No significant differences between palliative care and terminal care

populations were found concerning the distribution by patients' disease (all p-values of Fisher’s

Exact Probability Test exceed 0.1).

Disease progression

The progressive aspect of the disease in a palliative or terminal care patient was not mentioned in

95% of the RCTs included. Disease progression was not mentioned in all terminal care RCTs.

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Patients' prognosis

The patients’ prognosis was not mentioned in 56.7% (n=34) of the RCTs included. If the patients’

prognosis was described, their life expectancy was expressed as ‘more than n days’ in 16 RCTs.

Only 10 RCTs described prognosis as ‘less than n days’ and there was significant variability. No

significant difference in patients’ life expectancy was found when comparing the distribution by

stated prognosis (less than n days) in palliative care RCTs (14, 180, 180, 180, 180, 365, 365 days)

with that in terminal care RCTs (3, 180, 180, 365 days) (p=0.86, calculated using exact Mann-

Whitney U test).

Setting

Most of the interventions in our selected studies occurred in a hospital setting (41.7%) (see figure

3). Only one RCT took place in a nursing home, while 17 RCTs (30%) occurred in the home care

setting. 15.0% were performed in a palliative care unit or hospice, and 10.1% used multiple

settings. We identified no terminal care RCTs in hospice settings. No significant differences were

found between settings for palliative care and terminal care RCTs (all values of Fisher’s Exact

Probability Test exceed 0.1).

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Interventions

Complex interventions, defined as multiple and often diverse interventions delivered by different

care-givers (e.g. care programs), were performed in 30.0% of the selected studies (n=18) (see

figure 4). Symptom relief through drug administration was the major intervention strategy in

23.3% of RCTs (n=14). Other interventions included symptom control through surgery (n=6),

promoting communication (n=5), alternative therapies (n=5), advance care planning (n=3),

psychiatric care (n=3), symptom control through radiotherapy (n=2), disease control through

radiotherapy (n=1), disease control through drug administration (n=1), and patient and caregiver

education (n=1).

We noticed a greater variety of interventions (11 versus 5) in palliative care RCTs compared to

those in terminal care (p=0.01). More terminal care RCTs included a psychiatric intervention than

did palliative care RCTs (p=0.04), and more non-cancer palliative care RCTs performed complex

interventions compared with cancer palliative care RCTs (p=0.004).

Primary outcomes

We identified 23 different primary outcome measures in the 60 selected RCTs. When analysing by

study outcome we found a total of 118 primary outcomes. Half (50.9%) of primary outcomes dealt

with pain or symptom control (34.8%), or quality of life (16.1%) (see figure 5). Other outcome

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measures included economic outcomes (11.0%), mortality or survival rate (7.6%), and technical

outcomes (4.2%). Only one RCT (0.8%) chose disease control as the primary outcome. The

remaining outcome measures (25.4%) form a heterogeneous group of 17 outcomes dealing with

patient uncertainty, patient satisfaction, patients’ needs, patients’ worries, patients’ wishes about

end-of-life care, patients’ self-care, prevalence and timing of Do Not Attempt Resuscitation (DNAR)

codes, patients’ functional status, patients’ hope, place of death, caregiver well-being,

communication, complication rate, case conference features, toxicity, morbidity and the ability to

forgive.

More outcomes dealt with pain or symptom control (50.0% versus 30.0%) and quality of life

(25.0% versus 13.3%) when comparing terminal care RCTs to those in palliative care, although

these findings are not statistically significant (all p-values using chi-square test exceed 0.1).

DISCUSSION

The assumption that peer-reviewed RCTs use clear definitions or descriptions of palliative or

terminal care patients was incorrect. This highlights the lack of clear population criteria. The

diversity within the palliative and terminal care patient populations complicates the search for

clear population definitions and leads to ambiguity and misunderstandings as illustrated by some

remarkable findings.

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Patients’ disease. 49% of the non-cancer studies were excluded because they concerned not

palliative care but rather care for chronic non life-threatening conditions without a curative

treatment option (e.g. osteoarthritis, endometriosis, diabetic polyneuropathy). This finding

illustrates the narrow interpretation of the adjective ‘palliative’ as ‘non-curative’ in the context of

a transitional model of palliative care where palliative care and curative care are each other’s

opponents.(15) Furthermore, the definition of palliative care used in the databases might facilitate

our finding since MEDLINE defines palliative care as “care alleviating symptoms without curing the

underlying disease”. We argue for the use of a trajectory model of palliative care with a gradual

transition from curative to palliative care as described by Lynn et al.(12) Questions arise concerning

the reliability of allocating MeSH terms like ‘palliative care‘ and ‘terminal care’ to research articles.

Even the publication by Polinder et al., who studied the effect of surgery with curative intent in

patients with oesophageal cancer, is classified as a palliative care study.(16)

Disease progression. The absence of clearly defined disease progression was obvious in 95% of

RCTs. Progressive decline in patients’ health care status does, however, seem to be significant

when defining a palliative care patient, since many palliative care definitions include progress of

the disease as an essential feature.(3;4) We can only assume that this time dimension is intrinsically

present in the diseases as described in the trials included.

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Patients’ prognosis. We observed no significant difference between the prognosis for palliative

care patients and terminal care patients, although a difference was expected. An excessively small

sample may be partially responsible for this. This finding also illustrates the ambiguity of defining

and distinguishing these two patient populations. Moreover, patients’ prognostic characteristics

were not mentioned in 57% of the RCTs included and where present they were mostly expressed

as ‘more than n days’, indicating that patients were selected to survive the study programme

rather than indicating an essential characteristic of a palliative or terminal care patient.

Patients’ setting. Since the majority of patients would like to be cared for and die at home(4;17) and

since the preferred place of death is often seen as an important end point in palliative care, a

relatively small proportion of the included RCTs (30%) took place in the home care setting.

Surprisingly only one RCT was performed in a nursing home although we expected a significant

number of palliative and terminal care patients in nursing homes as 25% of the Belgian population

dies in this setting.(4)

In this review terminal care patients received significantly more psychiatric interventions than

palliative care patients. The practical significance of this finding is unclear since there is a lack of

clear criteria to differentiate palliative and terminal care patients and results comparing palliative

and terminal care populations need to be interpreted with caution, given the small sample sizes.

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Suggestions for key elements in a definition

Although this review describes important characteristics of palliative and terminal care patients

and the types of care delivered to them, it does not allow us to formulate an operational definition

of a palliative or terminal care patient, nor to discriminate between them. Nevertheless, we

propose that the following key elements should be integrated in definitions of a palliative care or

terminal care patient.

Disease trajectory. Most palliative care patients are suffering from an irreversible disease that is

reinforcing the normal decline of their health status and will ultimately lead to death. Similar

disease trajectories of a palliative care patient are described in the definition of palliative care

used by the Société Française d’Accompagnement et de soins Palliatifs (SFAP): “a patient in an

advanced or terminal stage of a severe, progressive and life-threatening disease without cutoff of

prognosis” (translation by Keirse et al.) and the derived research definition of a palliative care

patient used in the epidemiological survey of the Belgian Federal Knowledge Center: “a patient

suffering from an incurable, progressive, life-threatening disease with no possibility of obtaining

remission or stabilization or restraining of the illness”.(4) As mentioned earlier, the WHO definition

of palliative care describes palliative care patients only on the basis of diseases that are life

threatening (WHO 2002).(1) In the literature, however, as shown by Pastrana et al., no consensus

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exists about the attributes of palliative care patients’ illness (progressive, incurable, far-advanced

or just advanced, life threatening and/or active).(3)

The type of disease and its progression. Not only cancer, but also other pathologies are described

in this review, e.g. organ failure, dementia, neurodegenerative disorders, AIDS, and stroke. The

Worldwide Palliative Care Alliance (WPCA) lists similar conditions other than cancer requiring

palliative care.(18) Not every patient suffering from one of these diseases would, however, be

referred to as a palliative care patient. Factors such as an advanced disease(3;9), the rate of disease

progression, whether we can slow progression(3) and the absence of therapies with a curative

intent(3) would also play an important role as features to describe the course of disease

progression in a palliative care patient.

Approach and outcome. Complex interventions are performed in one third of the selected trials.

This complexity reflects the holistic and multidisciplinary approach to the palliative care patient.

Symptom relief through the administration of drugs is the second major intervention strategy.

These two characteristics are present in almost all palliative care definitions.(3;4) Outcome

measures are extremely diverse with an emphasis on pain and symptom control and quality of life.

These are well-known goals of palliative care and are clearly mentioned in the WHO definition of

palliative care.(1;3)

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Other elements. No specific pathology is mentioned in nine percent of all patient groups,

indicating that features other than disease-related characteristics may be important in the

description of the palliative care patient. The Belgian Federal Knowledge Center places a strong

emphasis on “the need for extra care” as an important characteristic to describe the palliative care

patient(4) and, as described in the introduction, the patient’s choice or readiness to accept a

palliative approach and the subjective appreciation of the palliative status by a physician or a

palliative care team using the surprise question could also be important elements.(9;11;12) Based on

the results of a nominal group technique (results not published), patient’s readiness to accept

palliative care and a vision of palliative care shared by the patient and all care-givers involved,

should also be considered as potentially important elements in a definition of a palliative care

patient.

The lack of a clear definition of the palliative and terminal care patient and the diversity of this

patient populations, as illustrated by this review, limit the comparison of results across different

studies, as previously shown by Borgsteede et al., and impede implementation of research findings

in everyday practice.(13)

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Strengths and weaknesses

This review is the first step in a mental exercise towards defining the palliative and terminal care

patient. As far as we know this has never been approached in such a systematic way.

The studies in this review represent the most recent research into palliative care interventions,

since over 80% of the randomized trials included have been published in the last five years.

We estimate the chance of a selection bias omitting papers with clear definitions to be extremely

small or almost negligible. Due to our selection, we included all RCTs in palliative care over a

recent time span of seven years (2003-2010) and all non-cancer RCTs ever published (1995-2010).

Since we included all non-cancer RCTs, missing RCTs could be described as cancer RCTs with a

publication date before 2003. We assume that it is very unlikely to find clear definitions of a

palliative care patient in RCTs dealing only with cancer patients published before 2003. We

performed an additional search in this group of missing RCTs which confirmed our hypothesis.

As well as the inappropriate use of the adjective “palliative” as “non-curative”, we must also

consider the subjective use of the MeSH term “terminal care” allocated to palliative care RCTs,

since only one out of nine duplicate studies between the palliative and terminal care data was

allocated to the terminal care arm. The question arises as to whether to revise all 14 terminal care

RCTs and reconsider their allocation to palliative or terminal care. This would, however, result in a

subjective appraisal since it is hard to distinguish between palliative care and terminal care due to

a lack of clear criteria. Consequently the results comparing palliative and terminal care populations

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need to be interpreted with caution. Moreover, this differentiation is complicated by the use of

heterogeneous definitions of palliative and terminal care by the different databases.

We are aware of the potential loss of information due to categorizing a complex description of a

palliative or terminal care patient into predetermined characteristics. This is a reference to patient

descriptions in two trials that were included but were not fully covered by our key characteristics.

In the study by Miller et al. eligible patients were those with “serious medical conditions that

would probably not cause their death within six months but were severe enough to create a

limited life expectancy, and therefore warranted consideration of end-of-life issues (as determined

by their primary physicians)”(19). Higginson et al. included “patients living with MS and deemed (by

staff – MS nurses, neurologists, rehabilitation staff, primary care staff, social workers – and in a

few instances via voluntary groups and self-referrals) – to have specialist palliative care needs.”(20)

Research agenda

After 30 years of palliative care research, the need for a clear and useful definition of a palliative

care patient persists. More intervention studies in palliative care research should focus on home

care and nursing home settings since a relatively small proportion of the included RCTs took place

in a home care setting and only one RCT was identified in the nursing home setting.(21) More

attention should be given to intervention studies with non-cancer patients since only six RCTs

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include only non-cancer patients and the majority of non-cancer studies (79%) did contain some

cancer patients.

CONCLUSIONS

In RCTs of palliative and terminal care no clear-cut definitions are used. The diversity of the

palliative and terminal care patient population makes it difficult to describe these patients clearly.

The resulting ambiguity is illustrated by some remarkable findings. Firstly, the misinterpretation of

the adjective ‘palliative’ as ‘non-curative’, since half of the non-cancer studies were excluded

because they concerned not palliative or terminal care but conditions without a curative

treatment option. Secondly, although disease progression should be an essential element in the

definition of a palliative care patient, most RCTs did not mention it explicitly. Thirdly, life

expectancy (expressed as “less than n days”) was similar in palliative care and terminal care RCTs,

demonstrating the difficulty of differentiating between these two patient groups.

We propose integrating the above-mentioned elements of patients’ health status (type of disease

and disease trajectory) and the types of care delivered to them (holistic, multidisciplinary approach

focusing on pain and symptom control and quality of life) into the definitions of a palliative care

patient and a terminal care patient. Nevertheless, we need a more qualitative approach to identify

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other key elements that are important in defining the palliative care patient and differentiating

them from a terminal care patient. Based on results from a nominal group technique we suggest

considering patients’ readiness and a vision of palliative care shared by the patient and all

caregivers involved to be potential important elements in the definitions of a palliative care

patient and a terminal care patient.

Acknowledgements

Our thanks go to the members of the Steering Committee of the Chair Constant Van de Wiel (J.

Menten, E. Keirse, M. Desmet, C. Gastmans, J. Lisaerde, C. Aubry, K. Struys, J. Coppens, A. Beyen,

K. Cornette) for their guidance and we are also grateful to Stefen Fieuws for his statistical support

and to prof. dr. Steve Iliffe for his comment on the final draft of the manuscript.

Funding

The Chair Constant Van de Wiel

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Date Database Search strategy Notes

4th March 2010 MEDLINE PALLIATIVE CARE RCTs:

“palliative care” [Majr] AND
"humans"[MeSH Terms] AND
"adult"[MeSH Terms]
TERMINAL CARE RCTs:
( “terminal care” [Majr] OR ‘terminally
ill’ [Majr]) AND "humans"[MeSH
Terms] AND "adult"[MeSH Terms]
4th March 2010 EMBASE PALLIATIVE CARE RCTs:
'palliative therapy'/exp/mj AND
([adult]/lim OR [aged]/lim) AND
[humans]/lim AND [embase]/lim
TERMINAL CARE RCTs:
( ‘terminal care’/exp/mj OR ‘terminally
ill patient’/exp/mj) AND ([adult]/lim
OR [aged]/lim) AND [humans]/lim AND
[embase]/lim
4th March 2010 CINAHL PALLIATIVE CARE RCTs: Exclude MEDLINE
MM ‘palliative care’ records;
TERMINAL CARE RCTs: Age Groups: “all adult”
MM ‘terminal care’ OR MM ‘terminally
ill patient’
4th March 2010 PSYCINFO PALLIATIVE CARE RCTs: Limit search to (human
exp *Palliative Care/ and abstracts and
TERMINAL CARE RCTs: "adulthood <age 18 yrs
exp *Terminally Ill Patients/ OR exp and older>" and
*"death and dying"/ human)

Table 1: Search strategy

 Data search MEDLINE, EMBASE, CINAHL, PSYCINFO
LITERATURE SEARCH

445 potentially relevant palliative care 94 potentially relevant terminal care

43 duplicate studies 6 duplicate studies

402 relevant palliative care studies 88 relevant terminal care studies Total n=490
SCREENING TITLE AND ABSTRACT

119 non cancer 283 cancer 53 non-cancer 35 cancer

studies studies studies studies

3 no abstract 3 no abstract
6 no RCT 14 no RCT
74 no PC 7 no TC
5 no PP 11 no TP
1 Chinese

31 of most 17 of most
31 non-cancer recent cancer 17 non-cancer recent cancer
studies included studies included studies included studies included Total n=96

3 only cancer 1 no PC 2 excl. cancer 3 no PP

READING FULL TEXT

4 no RCT 5 no RCT 4 no RCT 3 no RCT

1 duplicate PC 1 duplicate PC 5 duplicates PC 3 duplicates PC
1 duplicate TC

22 non-cancer 24 of most recent 6 non-cancer 8 of most recent

studies cancer studies studies cancer studies

= group A = group B = group C = group D Total n=60

Figure 1: Flow chart. After reading title and abstract we included all non-cancer studies and an equivalent number of the most recent
cancer studies. After reading the full text version of the articles a total of 60 randomized controlled trials were included in this review.
46 palliative care trials (22 non-cancer trials and 24 of the most recent cancer trials) and 14 terminal care trials (6 non-cancer trials and
8 of the most recent cancer trials). RCT: Randomised Controlled Trial, PC: Palliative Care, PP: Palliative Patient, TC: Terminal Care, TP:
Terminal Patient.

1
 Distribution of diseases (n=71) in 46 palliative care RCTs
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
cancer organ failure frailty dementia other not mentioned
Group A (n=22) 36% 17% 2% 4% 26% 15%
Group B (n=24) 100% 0% 0% 0% 0% 0%

Distribution of diseases (n=25) in 14 terminal care RCTs

100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
cancer organ failure frailty dementia other not mentioned
Group C (n=6) 29% 18% 12% 6% 24% 12%
Group D (n=8) 100% 0% 0% 0% 0% 0%

Figure 2: Distribution of diseases in 46 palliative care RCTs and 14 terminal care RCTs. The numbers in the table
represent the percentage of patient populations with the corresponding disease in non-cancer RCTs (group A and C) and
in cancer RCTs (group B and D). No significant differences between palliative care and terminal care patients were found
(all p-values of Fisher’s Exact Probability Test exceed 0.1).

1
 Distribution of settings in 46 palliative care RCTs
70%
60%
50%
40%
30%
20%
10%
0%
nursing palliative multiple
home hospital hospice others
home care unit settings
group A (n=22) 27% 0% 23% 5% 23% 0% 23%
group B (n=24) 25% 0% 58% 4% 0% 4% 8%

Distribution of settings in 14 terminal care RCTs

60%

50%

40%

30%

20%

10%

0%
nursing palliative multiple
home hospital hospice others
home care unit settings
group C (n=6) 33% 17% 33% 17% 0% 0% 0%
group D (n=8) 38% 0% 50% 13% 0% 0% 0%

Figure 3: Distribution of settings in 46 palliative care RCTs and 14 terminal care RCTs. The numbers in the table represent
the percentage of RCTs in the corresponding setting. Group A and C are non-cancer RCTs, group B and D are cancer
RCTs. No significant differences between palliative care and terminal care patients were found (all p-values of Fisher’s
Exact Probability Test exceed 0.1).

1
 Distribution of interventions in 46 palliative care RCTs
60%

50%

40%

30%

20%

10%

0%
medication for medication for surgery for radiotherapy radiotherapy education of
advance care to promote complex alternative
symptom disease symptom for symptom for disease psychiatric care patient and
planning communication interventions therapies
controle controle controle controle controle care-giver
group A (n=22) 5% 18% 0% 5% 0% 0% 0% 0% 55% 5% 14%
group B (n=24) 0% 21% 4% 21% 8% 4% 21% 4% 13% 0% 4%

Distribution of interventions in 14 terminal care RCTs

60%

50%
40%

30%

20%

10%

0%
medication for medication for surgery for radiotherapy radiotherapy education of
advance care to promote complex alternative
symptom disease symptom for symptom for disease psychiatric care patient and
planning communication interventions therapies
controle controle controle controle controle care-giver
group C (n=6) 17% 17% 0% 0% 0% 0% 0% 17% 33% 0% 17%
group D (n=8) 13% 50% 0% 0% 0% 0% 0% 25% 13% 0% 0%

Figure 4: Distribution of interventions in 46 palliative care RCTs and 14 terminal care RCTs. The numbers in the table
represent the percentage of RCTs with the corresponding intervention. Group A and C are non-cancer RCTs and group B
and D are cancer RCTs. We noticed a greater variety of interventions in palliative care RCTs compared to those in
terminal care (p=0.01). More terminal care RCTs concerned a psychiatric intervention than palliative care RCTs (p=0.04)
and more palliative care non-cancer RCTs performed complex interventions compared to palliative care cancer RCTs
(p=0.004).

1
 Distribution of primary outcomes (n=90) in 46 palliative care
RCTs
35%
30%
25%
20%
15%
10%
5%
0%
symptom economic mortality / technical disease
quality of life others
intensity outcome survival outcome control
group A (n=22) 10% 33% 18% 4% 2% 33% 0%
group B (n=24) 17% 27% 7% 15% 10% 22% 2%

Distribution of primary outcomes (n=28) in 14 terminal care

RCTs
60%
50%
40%
30%
20%
10%
0%
symptom economic mortality / technical disease
quality of life others
intensity outcome survival outcome control
group C (n=6) 14% 57% 7% 0% 0% 21% 0%
group D (n=8) 36% 43% 0% 7% 0% 14% 0%

Figure 5: Distribution of primary outcomes in 46 palliative care RCTs and 14 terminal care RCTs. The numbers in the
table represent the percentage of primary outcomes in non-cancer RCTs (group A and C) and in cancer RCTs (group B
and D). More outcomes dealt with pain or symptom control and quality of life when comparing terminal care RCTs to
those in palliative care, although these findings are not statistically significant (all p-values using chi-square test exceed
0.1).

1
Appendix 1: characteristics and codes

pathology
1 = cancer
2 = organ failure
3 = frailty
4 = dementia
5 = others
6 = not mentioned

progression
1 = no
2 = yes
3 = not mentioned

prognosis
-- = not mentioned
more than n days
less than n days

setting
1 = home
2 = nursing home
3 = hospital
4 = palliative care unit
5 = hospice
6 = others (health service centre, case management centre)
7 = multiple settings
8 = not mentioned

1
intervention
1 = advance care planning
2 = medication for symptom control
3 = medication for disease control
4 = surgery for symptom control
5 = surgery for disease control
6 = radiotherapy for symptom control
7 = radiotherapy for disease control
8 = psychiatric care
9 = to promote communication
10 = social care
11 = spiritual care
12 = multiple/complex interventions
13 = patient and caregiver education
14 = alternative therapies

outcome
1 = quality of life
2 = symptom intensity
3 = economic outcome
4 = mortality/survival
5 = technical outcome
6 = others
7 = disease control

2
 Appendix 2: Quantitative description of different patient-related characteristics for 46 palliative care RCTs and 14 terminal care RCTs.
Statistically significant differences (Fisher’s exact test) are marked with * or §, n.a.: not applicable.

PALLIATIVE CARE RCTs TERMINAL CARE RCTs ALL RCTs

NON-
CANCER TOTAL NON-CANCER CANCER TOTAL TOTAL
CANCER

group A group B group A+B group C group D group C+D group A+B+C+D
pathology % % % % % % %
(n=22) (n=24) (n=46) (n=6) (n=8) (n=14) (n=60)
* *
cancer 17 77 24 100 41 89 5 83 8 100 13 93 54 90
* * § §
organ failure 8 36 0 0 8 17 3 50 0 0 3 21 11 18
frailty 1 5 0 0 1 2 2 33 0 0 2 14 3 5
dementia 2 9 0 0 2 4 1 17 0 0 1 7 3 5
* *
not mentioned 7 32 0 0 7 15 2 33 0 0 2 14 9 15
* * § §
other 12 55 0 0 12 26 4 67 0 0 4 29 16 27
MS 2 9 n.a. n.a. 2 4 0 0 n.a. n.a. 0 0 2 3
neurodegenerative disorders 4 18 n.a. n.a. 4 9 0 0 n.a. n.a. 0 0 4 7
amyloidosis 1 5 n.a. n.a. 1 2 0 0 n.a. n.a. 0 0 1 2
CVA 1 5 n.a. n.a. 1 2 1 17 n.a. n.a. 1 7 2 3
AIDS 1 5 n.a. n.a. 1 2 2 33 n.a. n.a. 2 14 3 5
major accident 1 5 n.a. n.a. 1 2 0 0 n.a. n.a. 0 0 1 2
low back pain 1 5 n.a. n.a. 1 2 0 0 n.a. n.a. 0 0 1 2
 coma 0 0 n.a. n.a. 0 0 1 17 n.a. n.a. 1 7 1 2

group A group B group A+B group C group D group C+D group A+B+C+D
progressive illness % % % % % % %
(n=22) (n=24) (n=46) (n=6) (n=8) (n=14) (n=60)
yes 1 5 2 8 3 7 0 0 0 0 0 0 3 5
no 0 0 0 0 0 0 0 0 0 0 0 0 0 0
not mentioned 21 95 22 92 43 93 6 100 8 100 14 100 57 95

group A group B group A+B group C group D group C+D group A+B+C+D
prognosis % % % % % % %
(n=22) (n=24) (n=46) (n=6) (n=8) (n=14) (n=60)
not mentioned 13 59 13 54 26 57 3 50 5 63 8 57 34 57
mentioned 9 41 11 46 20 43 3 50 3 38 6 43 26 43
less than #d 4 18 3 13 7 15 0 0 3 38 3 21 10 17
more than #d 5 23 8 33 13 28 3 50 0 0 3 21 16 27

group A group B group A+B group C group D group C+D group A+B+C+D
setting % % % % % % %
(n=22) (n=24) (n=46) (n=6) (n=8) (n=14) (n=60)
home 7 32 6 25 13 28 2 33 3 38 5 36 18 30
nursing home 0 0 0 0 0 0 1 17 0 0 1 7 1 2
* *
hospital 5 23 14 58 19 41 2 33 4 50 6 43 25 42
palliative care unit 1 5 1 4 2 4 1 17 1 13 2 14 4 7
* *
hospice 5 23 0 0 5 11 0 0 0 0 0 0 5 8
others 0 0 1 4 1 2 0 0 0 0 0 0 1 2
multiple settings 4 18 2 8 6 13 0 0 0 0 0 0 6 10

group A group B group A+B group C group D group C+D group A+B+C+D
intervention % % % % % % %
(n=22) (n=24) (n=46) (n=6) (n=8) (n=14) (n=60)
advance care planning 1 5 0 0 1 2 1 17 1 13 2 14 3 5
medication for symptom control 4 18 5 21 9 20 1 17 4 50 5 36 14 23
medication for disease control 0 0 1 4 1 2 0 0 0 0 0 0 1 2
surgery for symptom control 1 5 5 21 6 13 0 0 0 0 0 0 6 10
radiotherapy for symptom
0 0 2 8 2 4 0 0 0 0 0 0 2 3
control
radiotherapy for disease control 0 0 1 4 1 2 0 0 0 0 0 0 1 2
to promote communication 0 0 5 21 5 11 0 0 0 0 0 0 5 8
* *
psychiatric care 0 0 1 4 1 2 1 17 2 25 3 21 4 7
* *
multiple/complex interventions 12 55 3 13 15 33 2 33 1 13 3 21 18 30
education of patient and care-
1 5 0 0 1 2 0 0 0 0 0 0 1 2
giver
alternative therapies 3 14 1 4 4 9 1 17 0 0 1 7 5 8

group A group B group A+B group C group D group C+D group A+B+C+D
outcome % % % % % % %
(n=22) (n=24) (n=46) (n=6) (n=8) (n=14) (n=60)
quality of life 5 23 7 29 12 26 2 33 5 63 7 50 19 32
 * *
symptom intensity 16 73 11 46 27 59 8 133 6 75 14 100 41 68
* *
economic outcome 9 41 3 13 12 26 1 17 0 0 1 7 13 22
mortality/survival 2 9 6 25 8 17 0 0 1 13 1 7 9 15
technical outcome 1 5 4 17 5 11 0 0 0 0 0 0 5 8
disease control 0 0 1 4 1 2 0 0 0 0 0 0 1 2
* *
others 16 73 9 38 25 54 3 50 2 25 5 36 30 50
* *
patient satisfaction 4 18 0 0 4 9 0 0 0 0 0 0 4 7
ability to forgive 0 0 2 8 2 4 0 0 0 0 0 0 2 3
complications 0 0 3 13 3 7 0 0 0 0 0 0 3 5
morbidity 0 0 2 8 2 4 0 0 0 0 0 0 2 3
hope 0 0 1 4 1 2 0 0 0 0 0 0 1 2
communication 0 0 1 4 1 2 1 17 0 0 1 7 2 3
patients' functional status 3 14 0 0 3 7 0 0 0 0 0 0 3 5
case conference features 1 5 0 0 1 2 0 0 0 0 0 0 1 2
place of death 2 9 0 0 2 4 0 0 0 0 0 0 2 3
patients' self care 1 5 0 0 1 2 0 0 0 0 0 0 1 2
patients' worries 1 5 0 0 1 2 0 0 0 0 0 0 1 2
patients' needs 1 5 0 0 1 2 0 0 0 0 0 0 1 2
wishes about end-of-life care 2 9 0 0 2 4 0 0 1 13 1 7 3 5
wellbeing of care-giver 0 0 0 0 0 0 1 17 1 13 2 14 2 3
prevalence and timing of DNR codes 0 0 0 0 0 0 1 17 0 0 1 7 1 2
patient uncertainty 1 5 0 0 1 2 0 0 0 0 0 0 1 2
Appendix 3: Qualitative description of different study-related characteristics of 46 palliative care RCTs and 14 terminal care RCTs.

PALLIATIVE CARE
number of
RCTs disease % cancer setting intervention follow-up main outcome(s)
participants
CANCER STUDIES

Symptom-focused 4.5 months (6 Toxicity of oral

Molassiotis A., Colorectal or
(22) 164 100 home home care nursing chemotherapy chemotherapy (clinical
2009 breast cancer
programme cycles) adverse affects)

Malignant
extrahepatic
biliary
obstruction Uncoated, self- 6 months or Stent occlusions
Loew et al., 2009 (gallbladder, expanding metal biliary until stent requiring
(23) 241 100 hospital
pancreatic, stents of 2 different occlusion or reintervention,
cholangiocar designs death mortality
cinoma,
metastatic
cancer)
Adenocarcin
oma of Irinotecan+ 5'FU in Until death or
Curran et al., 2009
(24) 333 stomach or 100 hospital chemotherapy naive study QoL, survival
oesophagoga patients completion
stric junction

1
 Advanced
cancer A nursing-led,
Until death or
Bakitas et al., 2009 (breast, multicomponent, QoL, symptom
(25) 322 100 hospital study
genitourinary psychoeducational intensity, resource use
completion
gastrointesti programme
nal, lung)

Cost comparison with

Polinder et al. Oesophageal A nurse-led follow-up
(16) 109 100 home 12 months standard follow-up by a
2009 cancer at home after surgery
surgeon

Self-expanding metal Until death or

Shenfine et al., Oesophageal Dysphagia grading, QoL
(26) 215 100 hospital stents for malignant study
2009 cancer at six weeks, total cost
dysphagia completion

CBT competence of
Advanced Nurse training in
specialist nurse, anxiety
Moorey et al., cancer cognitive behaviour
(27) 80 100 home 16 weeks and other psychological
2009 (multiple therapy (CBT) with
symptoms in palliative
diagnoses) home care visits
patients

Terminal health Forgiveness therapy,

Hansen et al., 2009 Until study Forgiveness, anger,
(28) 20 cancer, not 100 service once-weekly individual
completion hope, QoL
specified centre sessions

2
 Technical success,
Oesophageal Double-layered Niti-S
(29) improvement in
Kim et al., 2008 37 or gastric 100 hospital stents for malignant Until death
dysphagia score,
cardia cancer dysphagia
complications
Metastatic
cancer
Single versus multiple
Arnalot et al., 2008 (breast, lung,
(30) 160 100 hospital fraction radiotherapy 48 weeks Absence of pain
gastrointesti
for bone metastases
nal, prostate,
other)
Gemcitabine in
Xinopoulos et al., Pancreatic patients with
(31) 49 100 hospital 12 months QoL, survival in weeks
2008 cancer unresectable
pancreatic cancer

Cancer Venous thrombo-

Weber et al., 2008 Prophylactic anti-
(32) 20 (multiple 100 hospital 18 months embolic disease,
coagulation
diagnoses) complications, survival

3
 Malignant
biliary
strictures Duration of stent
(pancreatic, Self-expanding metal Until death or patency, adverse
Katsinelos et al.,
(33) 92 gall bladder, 100 hospital stents of 2 different duodenal events, mechanism of
2008
bile duct, designs obstruction stent occlusion, overall
papillary, patient survival
metastatic
lymph node)
Subcutaneous IL-2
Metastatic and/or melatonin in
(34) Cancer progression,
Lissoni al., 2008 846 cancer (not 100 hospital patients with 3 years
survival time
specified) untreatable metastatic
solid tumours

Advanced
Laval et al., 2008 Methylphenidate as
(35) 110 cancer (not 100 hospital 28 days Anti-asthenic affect
treatment for asthenia
specified)

Terminal
(36) cancer palliative Taiwanese traditional
Wu et al., 2008 2466 100 10 days Pain
(multiple care unit herbal diet
diagnoses)

4
 Advanced Expressive writing in
Bruera et al., 2008 multiple
(37) 24 cancer (not 100 patients receiving 2 weeks Anxiety
settings
specified) palliative care

Self-expanding plastic Stent placement,

Conio et al., 2007 Oesophageal
(38) 101 100 hospital stents for malignant Until death complications,
cancer
oesophageal dysphagia dysphagia score

Pre-terminal
cancer (lung, Intravenous ATP Safety of
Beijer et al., 2007
(39) 51 gastrointesti 100 home administration in the 8 weeks administration, side-
nal, prostate, home setting effects
other)
Psychosocial
Advanced
supportive intervention
Duggleby et al., cancer
(40) 60 100 home "Living with Hope 2 weeks Hope, QoL
2007 (multiple
Programme" in home
diagnoses)
care

5
 Advanced
Number of questions
cancer
A Question Prompt List asked and topics
(gastro-
(QPL) to enhance discussed relevant to
Clayton et al., intestinal multiple
(41) 174 100 communication about 3 weeks end-of-life care or
2007 origin, lung, settings
prognosis and end-of- prognosis,
breast,
life care patient/physician
prostate,
satisfaction
skin, other)
Advanced
Amouzegar- Single versus multiple
cancer
Hashemi et al., 70 100 hospital fraction radiotherapy 1 month Pain
(42) (multiple
2008 for bone metastases
diagnoses)

A patient-held QoL
Mills et al., 2009
(43) 115 Lung cancer 100 home diary in routine 4 months QoL
oncology practice

Until endpoint
Palliative low-dose
Murthy et al., 2008 Advanced of failure or
(44) 36 100 hospital involved-field Lymphoma control
lymphoma censoring
radiotherapy
event

6
PALLIATIVE CARE
RCTs number of
disease % cancer setting intervention follow-up main outcome(s)
NON-CANCER participants
STUDIES
Multi-professional Service use, cost-
Higginson et al., Multiple multiple palliative care team for effectiveness, patient
(45) 52 0 26 weeks
2009 sclerosis settings severe multiple symptoms, caregiver
sclerosis burden
Chronic
Benzo et al., 2009 obstructive Lung volume reduction
(46) 1218 0 hospital 5 years Death, QoL
pulmonary surgery (NETT study)
disease
Cancer,
Outlook intervention
organ failure,
Steinhauser et al., multiple (end-of-life preparation
(47) 82 neurodegene 59 2 weeks
2008 settings and completion
rative
discussions)
diseases
Cancer,
Horne-Thompson
(48) 25 organ failure, 92 hospice Music therapy - Anxiety
et al., 2008
amyloidosis
Cancer, Patient satisfaction,
Interdisciplinary
Gade et al., 2008 organ failure, symptom control, cost
(49) 517 31 hospital palliative care service 6 months
dementia, of care for 6 months
(IPCS)
stroke after hospital discharge
Shelby-James et Not Case conferences Case conference
(50) 167 91 home Until death
al., 2007 mentioned versus specialised characteristics

7
 palliative care teams (participants, topics,
duration, plans)
Satisfaction with care,
Interdisciplinary in-
Brumley et al., Cancer, use of medical services,
(51) 298 47 home home palliative care 90 days
2007 organ failure site of death, cost of
team
care
(52) Not multiple
Kyle et al., 2006 34 - Aromatherapy 4 weeks Anxiety
mentioned settings
Educational outreach Until death or Patient functional
Abernethy et al., Not
(53) 461 - home visiting versus case study status, pain intensity,
2006 mentioned
conferencing completion resource utilization
Patient self-
Chronic
management,
obstructive
Phoenix intervention Until death or preparation for end of
Aiken et al., 2006 pulmonary
(54) 192 0 home (intensive home-based study life, physical and
disease,
case management) completion mental functioning,
chronic heart
medical system
failure
utilization
Life-threatening Illness Depression symptoms,
Cancer,
Miller et al., 2005 Supportive-Affective anxiety, spiritual well-
(19) 51 organ failure, - hospital 12 months
Group Experience (LTI- being, death-related
frailty, AIDS
SAGE) emotional distress
Topical benzydamine
Prentice et al, Not
(55) 30 - hospice cream for pressure 24 hours Pain
2005 mentioned
pain

8
 Cancer,
organ failure, Symptom burden,
Inclusion of palliative
neurodegene prescribing practices,
Meier et al., 2004 care assessments and Until death or
(56) 321 rative 75 home advance care planning
interventions in case case closure
diseases, status, satisfaction,
management
major health care utilization
accident
Cancer,
Addition of 1 mg Until Viability of syringe
Reymond et al., neurodegene
(57) 38 97 hospice dexamethasone to breakdown of driver subcutaneous
2003 rative
syringe drivers syringe drivers sites
diseases
Cancer,
Schofield et al., neurodegene Use of a multi-sensory
(58) 26 88 hospice 2 weeks Anxiety, QoL
2003 rative environment
diseases
Physical symptoms,
Cancer, non- health-related QoL,
Hanks et al., 2002 Palliative Care Team
(59) 261 cancer (not 90 hospital 4 weeks satisfaction with care,
(PCT)
specified) health service resource
use
Pain, mood, illness
Use of a Patient Care certainty, health care
Latimer et al., Not multiple
(60) 46 - Travelling Record 1-2 month and social service
1998 mentioned settings
(PCTR) utilization, satisfaction
with care
Sweeney et al., 35 Cancer, 97 hospice Mucin-containing oral 14 days Dryness and related

9
 (61)
1997 neurodegene spray for treatment of symptoms
rative xerostomia
diseases
Until final
Number of
Ahronheim et al., End-stage discharge or
(62) 99 0 hospital Palliative Care Team hospitalisations, length
2000 dementia in-hospital
of stay, mortality
death
Cancer, non-
Grande et al., 1999 Hospital at home
(63) 229 cancer not 87 home Until death Site of death
service
specified
An innovative palliative Study outcomes
care service (a (compliance,
consultant in palliative recruitment, attrition,
Higginson et al., Multiple multiple
(20) 52 0 medicine, a clinical 24-26 weeks missing data), clinical
2008 sclerosis settings
nurse specialist, an outcomes (Palliative
administrator and a Outcome Scale, MS
psychosocial worker) Impact Scale)
Immediate-release
Cancer,
Kamboj et al., palliative morphine in patients
(64) 14 lower back 86 - Cognitive functioning
2005 care unit with chronic opioid
pain
therapy

10
TERMINAL CARE
number of
RCTs disease % cancer setting intervention follow-up main outcome(s)
participants
CANCER STUDIES

Participants'
El-Jawahri et al., Malignant Video to facilitate end-
(65) 50 100 hospital - preferences for end-of-
2010 glioma of-life discussions
life care

COPE intervention for

family caregivers
McMillan et al., Cancer, not
(66) 329 100 home (creativity, optimism, 30 days Symptom distress, QoL
2007 specified
planning, expert
information)
Advanced
cancer (lung,
Philip et al., 2006 Oxygen therapy for the Dyspnoea, oxygen
(67) 51 breast, 100 hospital -
relief of dyspnoea saturation
colorectal,
other)
Terminal
cancer
(breast,
Parenteral hydration
Bruera et al., 2005 genito- Hydration, overall
(68) 49 100 hospital (1000 ml versus 100 ml 2 days
urinary, symptom control
normal saline)
gastro-
intestinal,
gynaecologic

11
 al, other)
Advanced Partner-guided cancer
cancer (lung, pain management Pain, QoL, caregiver
Keefe et al., 2005
(69) 78 breast, 100 home training (cognitive and 1 month self-efficacy, caregiver
prostate, behavourial pain strain, caregiver mood
other) coping skills)
Advanced
cancer
(breast,
Dexamethasone in
genito-
Bruera et al., 2004 addition to Nausea, appetite,
(70) 43 urinary, 100 hospital 8 days
metoclopramide for fatigue, pain, vomiting
gastro-
chronic nausea
intestinal,
gynaecologic
al, other)
Terminal Clinical music therapy
Hilliard et al., 2003
(71) 80 cancer 100 home with routine hospice Until death QoL, length of life
(multiple) care
Octreotride versus
Terminal Hyoscine Study feasibility,
(72) palliative
Clark et al. 2008 10 cancer, not 100 hydrobromide for Until death symptom intensity
care unit
specified control of noisy assessment by nurse
breathing

12
TERMINAL
CARE RCTs number of
disease % cancer setting intervention follow-up main outcome(s)
NON-CANCER participants
STUDIES
Atropine versus
hyoscine
Cancer, non-
Wildiers et al., palliative buthylbromide versus Intensity of death
(73) 333 cancer not 95 Until death
2009 care unit scopolamine for rattle, side effects
specified
treatment of death
rattle
Until death
Downey et al., Not Massage and guided (and 6 months
(74) 167 69 home QoL
2009 mentioned meditation after) or study
completion
Frailty, organ
Family-based
failure, Caregiver stress and
Allen et al., 2008 intervention
(75) 31 stroke, 8 home 9 to 10 weeks family communication
constructing personal
dementia, (multiple)
legacy
cancer
nursing
Chapman et al., Advanced Advanced Illness Care Agitation, pain,
(21) 118 0 home 8 weeks
2007 dementia team (AICT) depression
residence
Cancer, Life-threatening Illness Depression symptoms,
Miller et al., 2005
(19) 51 organ failure, - hospital Supportive-Affective 12 months anxiety, spiritual well-
frailty, AIDS Group Experience (LTI- being, death-related

13
 SAGE) emotional distress
Incidence and timing of
6 months written DNAR orders,
Organ failure, SUPPORT-trial:
SUPPORT-trial, (Phase 1) and patient-physician
(76) 9105 coma, 14 hospital advanced care planning
1995 80 days (Phase agreement on CPR
cancer, intervention
2) preferences, hospital
resource use, pain

14