Palliative Medicine. Return home at the end of life: Patients' vulnerability and risk factors

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1 Palliative Medicine Return home at the end of life: Patients' vulnerability and risk factors P Vassal, P Le Coz, C Hervé, Y Matillon and F Chapuis Palliat Med : 139 originally published online 19 January 2011 DOI: / The online version of this article can be found at: Published by: Additional services and information for Palliative Medicine can be found at: Alerts: Subscriptions: Reprints: Permissions: >> Version of Record - Mar 15, 2011 OnlineFirst Version of Record - Jan 19, 2011 What is This?

2 Original Article Return home at the end of life: Patients vulnerability and risk factors Palliative Medicine 25(2) ! The Author(s) 2010 Reprints and permissions: sagepub.co.uk/journalspermissions.nav DOI: / pmj.sagepub.com P Vassal Service de Soins Palliatifs, Hôpital Bellevue, France P Le Coz Espace éthique méditerranéen, Hôpital de la Timone, France C Hervé Université René Descartes, Faculté de médecine, Paris, France Y Matillon Laboratoire de l EA 4129, Santé-Individu-Société, Hôpital de l Hotel Dieu, France F Chapuis Unité de Méthodologie en Recherche Clinique, Département d Information Médicale des Hospices Civils de Lyon, Université Claude Bernard, France Abstract Although most of the people in good health questioned about the subject said they would like to die at home, in the western world between 60 and 80% of deaths occur in hospital. Most authors consider that the indispensable conditions for a return home are the patient s desire and presence of the family and caregivers with the appropriate skills. The assessment of other factors predictive of a return home is inadequate. The aim of this study is to clarify how the return home is influenced by the vulnerability of the patient at the end of life, and by that of the family and caregivers. We carried out a multicentric, observational, prospective, exhaustive and longitudinal epidemiological study (three months follow-up), including 146 patients hospitalized at the end of their life and desiring to return home. For these patients the caregivers respected their freedom to choose to die at home in over half the cases (56%). Their overall vulnerability (personal, family context and caregivers) had a significant influence on the return home. This overall vulnerability was in fact identified as applying in 40% of the clinical situations, and made the possibility of a return home 50% less likely. Keywords Autonomy, end-of-life care, palliative care, vulnerability Introduction In the vast majority of cases (between 60 and 90%), people die in hospital. 1,2 However, when people in good health are asked what they want, between 60 and 80% declare they would prefer to die at home. 1 4 The same is true for hospital patients towards the end of their life who express the desire to return home. Some of them will receive a positive response to their request, others will not. What does this mean? Do the caregivers take no notice of the patient s freedom to choose? Are some patients close to death too vulnerable to return home? Are the means for organizing palliative care on an outpatient basis still too inadequate to allow these patients to be managed outside the hospital? Most authors consider that the indispensable conditions for a return home are on the one hand the patient s desire, and on the other the presence of family and caregivers with the appropriate skills. The other factors predictive of a return home, such as sex, 5 10 age, 5 9,11 14 urban environment, use of home hospitalization (HH) services 17,18 and evolution of the illness, 15 are not well assessed and the results are often contradictory. Apart from the socio-demographic factors mentioned above, to our knowledge there has been no prospective study of the influence of the end-of-life patient s vulnerability from the clinical, ethical and practical points of view with respect to the return home, nor of that of the family and caregivers. The aim of this study is to clarify the influence of this overall vulnerability (patient, family, caregivers) on the return home. Corresponding author: Dr Pascale Vassal, Service de Soins Palliatifs, Hôpital Bellevue, CHU de Saint-Étienne, Saint-Étienne Cedex 2, France pascale.vassal@chu-st-etienne.fr

3 140 Palliative Medicine 25(2) Methodology Study structure We carried out a multicentric (four hospital centres: one university hospital (tertiary teaching hospital), one cancer institute (reference centre), two general hospitals in the Saint-Etienne area) observational, prospective, exhaustive and longitudinal (three months of follow-up) epidemiological study, including all consecutive cases of end-of-life patients between February 2007 and March The study received the approval of the Saint-Etienne ethics committee, Institutional Review Board (IRB) , on 19 January Patients Patients hospitalized in medical departments were included. These were sick adults (age 18), at the end of life (Karnofsky index 40%), for whom palliative care was appropriate (defined by the French society for palliative care 19 as suffering from a serious, ongoing disease compromising the vital prognosis, in the advanced or terminal phase), who wanted to return home, and having given oral consent for follow-up on an observational basis. Assessment tools The vulnerability factors were studied using the Support Team Assessment Schedule (STAS), the only schedule validated in French. 20,21 The caregivers filled out the vulnerability factors assessment schedule. Vulnerability is the sum of physical, psychological, social and spiritual weakness and is based on specific items related to each symptom. Eleven items of varying nature concerned the patient: physical (pain, symptoms of discomfort), psychological (anxiety, personal feelings: guilt, lack of confidence), ethical (patient s awareness of their life expectancy, communication between the patient and their family and between professionals and the patient) and practical (personal project satisfied, practical help at home, financial problems, wasted time). Two items (anxiety and awareness of the patient s life expectancy) concerned the family; while three (proper communication between professionals, impact of professional staff s anxiety and other professionals opinions) concerned the caregivers. Each item was scored 0 (symptom under control) to 4 (symptom not under control) and 9 (unknown answer). The overall score obtained defined the patient s overall vulnerability, by which is meant all the vulnerability factors concerning the patient, their family and caregivers, with a potential range from 0 to 144. This allowed us to define two categories based on balanced populations (median): no vulnerability, proven vulnerability. Study structure On D0, D30, D60 and D90 (Figure 1), it was noted if the patient was alive or deceased and if they had made use of a specialized palliative care structure (mobile palliative care and support team, town-hospital network, HH services). Inclusion of patients in hospital Follow-up: monthly telephone contacts with the caregivers at the hospital or at home End of follow-up D0 D30 D60 D90 STAS scale filled out by the caregivers Figure 1. Diagram summarizing the structure of the study.

4 Vassal et al. 141 Statistical data The quantitative variables age, patient s overall score and sub-scores (patient, family, caregivers) were analysed in order to define the mean, standard deviation and minimum maximum, and a normality test was made (median and quartiles). The absolute and relative percentages were calculated for the following qualitative variables: return home, place of death, sex, family environment, main pathology and use of a specialized palliative care structure. With the aim of evidencing vulnerability factors predictive of a return home, we carried out an analysis based on the construction of an explanatory logistic model covering all the patients included in the study to begin with, then for those for whom all the items had been recorded. Results We included 146 patients. We followed them all up (except for one) for three months (Figure 2). Eighty two patients (56.6%) returned home. At the end of the study 106 patients (73.1%) had died (Figure 2). Socio-demographic characteristics Our population consisted of 64 women and 81 men, whose mean age was 69 (21 97). The main pathology for which the patient was receiving palliative care was cancer (90.4% of cases). The fact that the main helper was not a parent was associated in a significant fashion (p ¼ 0.003) with a return home (Table 1). A structure specialized in palliative care (mobile palliative care and support team, town-hospital network, HH service) was being used by 113 patients (77.9%) at the time of inclusion, and by a further 43 patients (29.4%) during the three months of follow-up. Recourse to this type of structure was a predictive factor for the return home (p < 0.001). Patient vulnerability factors Fifty seven (39.3%) patients presented distinct or very considerable vulnerability (mean score >20 (Table 2)). Univariate analysis of all 145 patients revealed that efficient organization at home was a predictive factor for the return home (p < 0.001). Taking those patients (n ¼ 63) for whom all the items were noted into consideration, the fact that the patient was not anxious (p ¼ 0.04), that the physical and psychological symptoms were under control (p ¼ 0.05), that practical factors were under control (p ¼ 0.03) and that the patient was not vulnerable (p ¼ 0.05) were predictive factors for the return home. Family vulnerability factors Thirty five families (24.1%) were identified as being vulnerable (mean score >3) due to the existence of considerable anxiety and non-awareness of the patient s life expectancy (Table 3). Caregiver vulnerability factors Proper communication between professionals (98.6%), their anxiety (2%) and the opinion of other 146 hospitalized patients wanted to return home 146 patients hospitalisés souhaitent retourner à domicile««1 lost to follow-up (Algeria) 145 patients 82 patients returned home (56.6%) 63 patients did not return home (43.4%) 33 patients alive 40% 49 patients deceased (60%): - home 22 patients - EHPAD 3 patients - hospital 4 patients 6 patients alive 10% 57 patients deceased 90% Figure 2. Outcome for hospitalized patients in the three months after expression of the desire to return home (February 2007 March 2008).

5 142 Palliative Medicine 25(2) Table 1. Socio-demographic characteristics of the 145 patients at the end of their life who wanted to return home (February 2007 March 2008) The patient returned home No Yes Total n (%) n (%) n (%) p Sex Female 30 (46.9) 34 (53.1) 64 (44.1) ns Male 33 (40.7) 48 (59.3) 81 (55.9) Age group (50.0) 7 (50.0) 14 (9.6) (50.9) 27 (49.1) 55 (40.0) ns 70 and over 28 (36.8) 48 (63.2) 76 (52.4) Marital status Single 2 (22.2) 7 (77.8) 9 6.2) Married 39 (43.8) 50 (56.2) 89 (61.4) ns Separated/divorced/widow(er) 22 (46.8) 25 (53.2) 47 (32.4) Place where residing Home 60 (45.1) 73 (54.9) 133 (91.7) Nursing home (EHPAD) 2 (22.2) 7 (77.8) 9 (6.2) ns Other 1 (33.3) 2 (66.7) 3 (2.1) Patient living with someone No 18 (46.2) 21 (53.8) 39 (26.9) Relation 43 (43.9) 55 (56.1) 98 (67.6) ns Other 2 (25.0) 6 (75.0) 8 (5.5) Main helper Relation 58 (47.2) 65 (52.8) 123 (84.8) Other 5 (22.7) 17 (77.3) 22 (15.2) 0.03* Main pathology Cancer 59 (45.0) 72 (55.0) 131 (90.4) ns ns: non-significant, EHPAD: nursing home for the dependent elderly. professionals (2%) were the factors used to measure the caregivers vulnerability. Vulnerability was revealed in six situations (4%) (Table 4). Overall vulnerability (patient, family, caregivers) The patient s overall vulnerability (mean score >25) was assessed as distinct, if not very considerable, for 59 patients (40.7%). For the other group of patients (n ¼ 69), the fact that there was no overall vulnerability for the patient was a predictive factor for the return home (p ¼ 0.06) (Table 5). Discussion When end-of-life patients in hospital want to return home, the caregivers respected their freedom to choose home as the place to end their life in over half the cases (56%). Their overall vulnerability (personal, family and caregivers) had a significant influence on the return home. It was in fact identified as applying in 40% of the clinical situations, and made the possibility of a return home 50% less likely. We examined each of the aspects of this vulnerability in turn, not only from the clinical (physical, psychological, spiritual) point of view, but also the ethical and practical points of view for the patient, family and caregivers. Physical, psychological and spiritual vulnerability factors contribute to the ill person s vulnerability at the end of life, and have an effect on the return home. When the question of the end of life is brought up, the immediate reaction of the population in general is

6 Vassal et al. 143 Table 2. Patient s vulnerability factors collected systematically by the caregivers (STAS scale) (February 2007 March 2008) Did the patient return home? No Yes Total p n (%) n (%) n (%) n ¼ 145 n ¼ 63 Clinical factors Pain 13 (44.8) 16 (55.2) 29 (20.0) ns 0.05* Other symptoms 26 (49.1) 27 (50.9) 53 (36.5) ns 0.05 Anxiety 22 (53.7) 19 (46.3) 41 (28.2) ns 0.04* Innermost feelings: guilt, lack of confidence 25 (41.7) 35 (58.3) 60 (41.3) ns ns Ethical factors Patient s awareness of their life expectancy 50 (45.0) 61 (55.0) 111 (76.6) ns ns Communication between the patient and their family 52 (46.0) 61 (54.0) 113 (78.0) ns 0.06 Communication between the professionals, patient and/or family 60 (44.8) 74 (55.2) 134 (92.4) ns ns Practical factors Personal project satisfied 42 (42.0) 58 (58.0) 100 (69.0) ns ns Practical help at home 28 (32.9) 25 (67.1) 85 (58.6) 0.002** 0.005** No financial problems 59 (45.4) 71 (54.6) 130 (89.6) ns ns No time wasted 62 (43.7) 80 (56.3) 142 (98.0) ns ns Patient s vulnerability (scores) Non-vulnerable (<20) 49 (55.7) 88 (50.7) ns 0.05* Distinctly vulnerable (>20) 33 (57.9) 57 (39.3) ns ns *p < 0.05, **p < ns: non-significant, STAS: Support Team Assessment Schedule. Table 3. Family s vulnerability factors collected systematically by the caregivers (STAS scale) (February 2007 March 2008) The patient returned home No Yes Total p n (%) n (%) n (%) n ¼ 145 n ¼ 63 Family vulnerability factors Anxiety 41 (44.1) (64.1) ns ns Awareness of the patient s life expectancy 57 (44.9) 70 (55.1) 127 (87.6) ns ns Family s vulnerability (scores) Non-vulnerable (0 3) 51 (46.4) 59 (53.6) 110 (75.9) ns ns Distinct vulnerability (>3) 12 (34.3) 23 (65.7) 35 (24.1) ns ns ns: non-significant, STAS: Support Team Assessment Schedule. anxiety and consternation, because many associate the end of life with suffering. 4 Yet in our study pain was still poorly controlled in only 20% of cases. In other countries, the prevalence of pain at the end of life is very variable, from 40% for the State of Virginia in 2005, 22 57% for Hong-Kong, 23 65% for Japan, 24 64% for London, 25 67% for Italy 26 and up to 73% for the State of Ohio in If our figures are well below the international average, this is due to the fact that in the studies quoted above it was the patients who assessed their pain (self-assessment), while in our study it was the caregivers who were questioned (hetero-assessment). It can be feared that pain is under-estimated by caregivers as can be seen from the prospective studies by Oi-Ling et al. 23 in Hong-Kong, and Nekolaichuk et al. 28 for Canada.

7 144 Palliative Medicine 25(2) Table 4. Caregivers vulnerability factors collected systematically by the caregivers (STAS scale) (February 2007 March 2008) The patient returned home No Yes Total n (%) n (%) n (%) p Caregivers vulnerability factors Proper communication between professionals 61 (42.7) 82 (57.3) 143 (98.6) ns Impact of professionals anxiety 2 (66.7) 1 (33.3) 3 (2.0) 0.08 Caregivers vulnerability (scores) Non-vulnerable (0 3) 60 (42.9) 79 (56.4) 139 (96.0) Distinct vulnerability (>3) 3 (50.0) 3 (50.0) 6 (4.0) 0.09 ns: non-significant, STAS: Support Team Assessment Schedule. Table 5. Overall vulnerability (patient, family, caregivers) measured according to the STAS scale (February 2007 March 2008) The patient returned home No Yes Total Overall vulnerability (scores) n (%) n (%) n (%) p Non-vulnerable (0 25) 39 (45.3) 47 (54.7) 86 (59.3) ns Distinct vulnerability (>25) 24 (40.7) 35 (59.3) 59 (40.7) ns: non-significant, STAS: Support Team Assessment Schedule. Symptoms of discomfort (dyspnoea, congestion in the upper respiratory tract, vomiting, constipation, bed sores, anorexia, asthenia) are still frequent at the end of life, in 37% of cases in our study. Other studies published almost always mention their presence, whether in the United States, 27 England, 25 Japan 24 or Hong-Kong. 23 Anxiety about the end and psychological suffering related to an overwhelming feeling of powerlessness with respect to illness and solitude are significant for 28% of the patients in our study. While studies published often report pain and symptoms of physical discomfort, the same is not true for anxiety and depression, which define psychological suffering. Nevertheless, two studies can be quoted that do not match our results: that by Modonesi et al., 26 which noted a 71% rate of depression and 79% rate of anxiety, and that by Nguyen et al., 29 which found psychological suffering for 70% of the 52 patients studied in an advanced or terminal phase. Physical and psychological pain are accompanied by spiritual suffering. For 42% of the patients in our study, in terms of inner feelings, the approach of death results in loss of confidence and a feeling of guilt. In this connection Hirsch 30 reported that illness itself is capable of causing feelings of guilt: for making the other person suffer more than oneself, for enduring and making others endure, about abandoning the other person. In the Netherlands, Rolf and Pool 31 found this type of existential suffering in 64% of the cases studied. Factors of a physical, psychological and spiritual nature make a significant contribution to the vulnerability of the ill person at the end of life. In our study, control of clinical symptoms had an impact on the patients return home. McWhinney et al., 32 Grande et al. 6 and Tiernan et al. 33 made the same finding. However, for Karisen and Addington-Hall, 12 whether or not pain and other symptoms of discomfort and anxiety are controlled has no influence on the return home. On the other hand factors of an ethical nature related with independence and the patient s freedom, such as the information they receive, their knowledge of how serious their illness is and their communication with health professionals and their family, do not interfere with the return home of an-end-of life patient, with the same result found by Chvetzoff et al. 34 In our study the caregivers considered that the information given was satisfactory in 92% of the situations. Gonc alves 35 and Chvetzoff et al. 34 noted levels of 72% and 68%, respectively. Seventy-six percent of our patients appeared to be aware of the seriousness of their illness, compared with 53% for Chvetzoff et al., 34 which indicates a proper level of information.

8 Vassal et al. 145 Communication between the patient and their family was described as frank for 77% of cases, whereas Chvetzoff et al. 34 considered it to be so in only 30% of cases. Towers 36 concluded that the main problem lies in difficulties with communication, a situation that we did not find in our study. Factors of a practical nature contribute to the social vulnerability of the person at the end of life and have an impact on the return home. Putting their affairs in order did not pose any problem for 69% of patients who did so before dying or had already organized everything, or in fact did not want to do anything. The organization of practical assistance is associated in a significant fashion with a return home. Indeed, 67% of patients who received such assistance returned home, compared with 43% who did not (p ¼ 0.005). This result concurs with that of Gomes and Higginson, 15 who quoted organization of the home and care among the six factors most often associated with a return home. When considering the material aspects of the end of life, the financial aspect must not be overlooked. In our study, the problem of financial resources had no effect on the return home. The mean age (71) and conditions for management at home offered by the French health system may explain the lack of any influence of financial resources. This financial assessment is an integral part of management of end-of-life patients, in accordance with the recommendations of several scientific societies in connection with the end-of-life and palliative care, notably the European Association for Palliative Care (EAPC). 37 We were able to show that during the three-month patients follow-up, the use of a structure specialized in palliative care was highly significantly (p < 0.001) associated with a return at home. Many authors 3,12,16,34,38,39 observed the same findings. It would be a mistake to conclude that this return home is solely connected with access to these kinds of specialized structure, as shown by Gomes and Higginson. 15 In fact, all the patients had access to these kinds of structures, but not all of them used them. Why? Among other obstacles were noted reticence of clinical departments, lack of preparation for a return home and unawareness of the existence of other resources within the hospital itself and externally. We can conclude, like Wright et al., 40 that it is absolutely essential to take the social context into account when considering a return home for end-of-life patients. In addition to the patient s vulnerability, we wanted to take the family s vulnerability into account. Hence the importance, for Kovacs et al., 41 of giving the family back its place during the end-of-life period. In our study, the caregivers reported that in the great majority of cases (87%), the families were aware of the seriousness of the prognosis, while the proportion dropped to 52% for Chvetzoff et al. 34 Nevertheless, the family goes through various crises. In our study one third of the families presented anxiety. The findings in three studies, carried out by Grunfeld et al., 42 McLean and Jones 43 and Kurtz et al., 44 were in agreement concerning this aspect of the question. This psychological suffering may sometimes take the form of a flight from reality expressed by the refusal to take charge of the patient at home. This refusal is caused by the fear of coming face-to-face with death. This phenomenon may explain one of the results of our study: when the main helper is not a close family member it is easier for the patient to return home. Consideration of the absolute vulnerability of a hospitalized patient implies that the vulnerability of the caregivers must also be considered. In our study the caregivers declared no communication problems nor feeling that they conveyed any anxiety to the patient, nor any need to consult other health professionals for their opinion, these being the three factors that measure the vulnerability of caregivers. This absence of any anxiety on behalf of the professionals and the patients return home are closely correlated (p ¼ 0.008). The fact that the caregivers did not feel the need to call on the skills of other professionals is also clearly correlated with the decision for a return home (p ¼ 0.09). It should nevertheless be mentioned and for us this is an important explanatory factor that a structure specialized in palliative care was called for in for 114 patients (i.e. 79%). When carrying out this study, the main difficulty encountered was identifying which patients wanted to return home. Many doctors told us only about those patients for whom a return home was already being considered, involving a palliative care network or a HH structure. We chose to ask the caregivers to fill out the vulnerability factor assessment scale, so it is possible that the caregivers assessment does not match what the patients felt. Why did we choose to operate in this way? We felt it was inappropriate and even (maybe mistakenly) unethical to meet patients at the end of their life whom we did not know and whom we would not see again, to ask them highly personal questions and others about their experience with their illness. So we preferred to contact the caregivers who were in charge of these patients and whom the patients knew. Finally, this study shows that the caregivers seem to respect the freedom of choice of patients at the end of their lives, as shown by the high proportion (56%) of patients who did return home. So, in spite of being vulnerable and in an uncertain situation, the patient remains independent in their ability to decide whether

9 146 Palliative Medicine 25(2) to return home. However, they are not free to decide when it is a question of their own vulnerability (this overall vulnerability increases the impossibility of returning home by 50%), or their dependence on others (patients return home more often when the main helper is not a close family member), or their need for a supportive environment, notably structures specialized in palliative care whose involvement acts in favour of a greater number of patients returning home. Acknowledgements We would like to thank the University Hospital Centre of Saint-Etienne for its moral and financial support. We acknowledge the physicians and the caregivers who took part in the survey. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Competing interests The authors declare that they have no competing interests. References 1. Brazil K, Howell D, Bedard M, Krueger P and Heidebrecht C. Preferences for place of care and place of death among informal caregivers at terminally ill. Palliat Med 2005; 19: Tang S. When death is imminent: where terminally ill patients with cancer prefer to die and why. Cancer Nurs 2003; 26: Rosenquist A, Bergman K and Strang P. Optimizing hospital-based home care for dying cancer patients: a population-based study. Palliat Med 1999; 13: CREDOC. Etude exploratoire sur les connaissances, repre sentations, et perceptions a` l e gard des soins palliatifs et de l accompagnement. Institut National de Pre vention et d Education pour la Sante, Alner-Elmquist M, Jordhoy MS, Jannert M, Fayers P and Kaasa SL. Place of death: hospital-based advanced home versus conventional care. Palliat Med 2004; 18: Grande G, Addington-Hall J and Todd C. Place of death and access to home care services: are certains patients groups at a disadvantage? Soc Sci Med 1998; 5: Chvetzoff G, Garnier M, Perol D and Devaux Y. Factors predicting home death for terminally ill cancer patients receiving hospital-based home care: the Lyon comprehensive cancer centre experience. J Pain Symptom Manag 2005; 30: Bruera E, Russell N, Sweeney C and Fisch M. Factors associated with home versus institutional death among cancer patients en Connecticut. J Am Geriatr Soc 2002; 49: Foreman L, Hunt R, Luke C and Roder D. Factors predictive of preferred place of death in the general population of South Australia. Palliat Med 2006; 20: Carisson M and Rollison B. A comparison of patients dying at home and patients dying at a hospice: sociodemographic factors and caregivers experiences. Palliat Support Care 2003; 1: Higginson I, Astin P and Dolan S. Where do cancer patients die? Ten-year trends in the place of death of patients in England. Palliat Med 1998; 12: Karisen S and Addington-Hall J. How do cancer patients who die at home differ from those who die elswhere? Palliat Med 1998; 12: Maida V. Factors that promote success in home palliative care: a study of a large suburban palliative practice. J Palliat Care 2002; 18: Costantini M. Geographical variations of place of death among Italian communities suggest an inappropriate hospital use in the terminal phase of cancer. Publ Health 2000; 114: Gomes B and Higginson I. Factors influencing death at home in terminally ill patients with cancer: systematic review. Br Med J 2006; 332: Burge F, Lawson B and Johnston G. Trends in the place of death of cancer patients, Can Med Assoc J 2003; 168: Rosenquist A, Bergman K and Strang P. Optimizing hospital-based home care for dying cancer patients: a population-based study. Palliat Med 1999; 13: Grande GE, Todd CJ, Barclay SI and Farquhar MC. Does hospital at home for palliative care facililate death at home? Randomised controlled trial. Br Med J 1999; 319: Socie té Franç aise d Accompagnement et de soins Palliatifs. A propos de la de finition des soins palliatifs [en ligne], (accessed November 2010). 20. Lagabrielle G, Guyot F, Jasso G and Couturier P. Un outil francophone des soins palliatifs à domicile: adaptation du Support Team Assessment Schedule (STAS). Sante Publique 2001; 13: Lagabrielle D, Jasso G and Couturier P. Evaluation et soins palliatifs. Premie` re partie: les questionnaires de qualité de vie en fin de vie. Me decine Palliative 2005; 4: Plonk W and Arnold R. Terminal care: the last weeks of life. J Palliat Med 2005; 8: Oi-Ling K, Man-Wah D and Kam-Hung D. Symptom distress as rated by advanced cancer patients, caregivers and physicians in the last week of life. Palliat Med 2005; 19: Morita T, Tsunoda J, Inoue S and Chihara S. Contributing factors to physical symptoms in terminally-ill cancer patients. J Pain Symptom Manag 1999; 18: Potter J, Hami R, Bryan T and Quigley C. Symptoms in 400 patients referred to palliative care service: prevalence and patterns. Palliat Med 2003; 17: Modonesi C, Scarpi E, Maltoni M, Derni S and Fabbri S. Impact of palliative care unit admission on symptom control evaluated by the edmonton symptom assessment system. J Pain Symptom Manag 2005; 30: Cowan J, Walsh D and Homsi J. Palliative medicine in a united states cancer center: a prospective study. Am J Hosp Palliat Care 2002; 19:

10 Vassal et al Nekolaichuk L, Bruera E, Spachynsi K, Maceachern T and Hanson J. A comparison of patient and proxy symptom assessments in advanced cancer patients. Palliat Med 1999; 13: Nguyen D, Frank-Soltysiak M and Bisson M. Study of terminally ill patients needs in an university hospital. Sante Publique 2001; 13: Hirsch E. L e thique a` l e preuve de la maladie grave: confrontation au cancer et a` la maladie d Alzheimer. Paris: Vuibert, Rolf C and Pool G. Concerns of terminally ill cancer patients in their home environment. Palliat Med 2006; 20: McWhinney I, Bass M and Orr V. Factors associated with location of death (home or hospital) of patients referred to a palliative care team. Can Med Assoc J 1995; 152: Tiernan E, O Connor M, O Siorain L and Kearney M. A prospective study of preferred versus actual place of death among patients referred to a palliative care homecare service. Ir Med J 2002; 95: Chvetzoff G, Perol D, Devaux Y, Lancry L, Rebattu P and Magnet M. Etude prospective de qualite des soins et de qualite de vie chez des patients cancéreux en phase palliative en hospitalisation ou a` domicile: analyse interme diaire de l e tude Trapado. Bull Cancer 2006; 93: Gonc alves F. Breaking bad news: experiences and preferences of advanced cancer patients at a Portuguese oncology center. Palliat Med 2005; 19: Towers A. Ethical issues in palliative care. Views of patients, families, and nonphysicians staff. Can Fam Physician 2003; 49: European Association for Palliative Care. (accessed November 2010). 38. Fukui S, Kawagoe H, Masako S, Noriko N, Hiroko N and Toshie M. Determinants of place of death among terminally ill cancer patients under home hospice care in Japan. Palliat Med 2003; 17: Gallo W, Baker M and Bradley E. Factors associated with home versus institutional death among cancer patients in Connecticut. J Am Geratr Soc 2001; 49: Wright E, Kiely M, Lynch P, Cull A and Selby P. Social problems in oncology. Br J Cancer 2002; 87: Kovacs P, Bellin M and Fauri D. Family-centered care: a resource for social work in end-of-life and palliative care. J Soc Work End Life Palliat Care 2006; 2: Grunfeld F, Coyle D, Whelan T, Clinch J and Reyno L. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. Can Med Assoc J 2004; 170: McLean L and Jones J. A review of distress ant its management in couples facing end-of-life cancer. Psychooncology 2007; 16: Kurtz M, Kurtz J, Given C and Given B. A randomized, controlled trial of a patient/caregiver symptom control intervention: effects on depressive symptomatology of caregivers of cancer patients. J Pain Symptom Manag 2005; 30: