© U.S. Cancer Pain Relief Committee, 2002 0885-3924/02/$–see front matterPublished by Elsevier, New York, New York PII S0885-3924(02)00462-1

Vol. 24 No. 2 August 2002 Journal of Pain and Symptom Management 245

Spain: Palliative Care Programs in Spain, 2000:A National Survey

Carlos Centeno, MD, Silvia Hernansanz, MD, Luis A. Flores, RN,Álvaro S. Rubiales, MD, and Francisco López-Lara, MD

Facultad de Medicina (C.C., S.H., L.A.F., A.S.R., F.L.L.), Universidad de Valladolid; Centro Regional de Cuidados Paliativos y Tratamiento del Dolor (C.C.), Salamanca; Equipo Domiciliario de Cuidados Paliativos (S.H.), Hospital Universitario de Valladolid; Centro de Salud de Medina del Campo (L.A.F.),

Valladolid; and Servicio de Oncologia (A.S.R., F.L.L.), Hospital Universitario de Valladolid, Spain.

Introduction

In order to better understand the data aboutthe development of palliative care in Spain, itis necessary to briefly describe the organizationof the health system in Spain. Spain has a pub-lic health system (similar to that of countrieslike Canada) which guarantees access to healthcare to its population of 40 million. These ser-vices are paid for through compulsory nationalinsurance contributions made by the workingpopulation. Spain has 17 Autonomous Regionsand a decentralized government, by which cen-tral authority is transferred to the Regions.This system of transferring power is not yetcomplete for the whole territory. Therefore,the authority for health issues may be either inMadrid, as the centralized power, or in each ofthe Autonomous Regions.

Public health resources, both general andspecialized, are well developed and generallymaintain a high level of competence thatmakes the Spanish health system comparableto the best in Europe. At times, this public sys-tem does not have resources to provide for cer-tain needs, and, in those cases, the use of non-public resources are approved. This takes theform of many concerted centers (privately runcenters with public financing and use). For ex-

ample, there are hospitals with palliative careunits that are run privately but partially fi-nanced by the public health system. In addi-tion, the public system admits the interventionof nonprofit organizations (NPO), which, withtheir own resources, carry out actions whichthe State and the Autonomous Regions havenot agreed on. This way, several NPOs, the mostimportant being the Asociación Española Con-tra el Cancer (AECC), have developed HomeCare Teams, which resemble charities in theUnited Kingdom. Lastly, there also exist someprivate health resources (hospitals, clinics,etc.) that are not connected with the publichealth system and where individuals pay theirown fees or through private health insurance.Some of these centers also have their own pal-liative care programs.

Palliative medicine aims at the global care ofterminally ill patients, which has become an in-creasing need given the state of specializationof medicine in our times. In Spain, programsor services specifically devoted to palliativecare started in 1985, when the first programwas created. It is interesting to review the litera-ture on the historical development of palliativecare in Spain,

1–5

as well as other recent publica-tions such as one on cultural issues related tosuch development

6

and a comparative study ofSpain and other European countries.

7

In the year 2000, the third national surveyon palliative care programs in Spain was car-ried out. The goal of these surveys is to find

Address reprint requests to:

Carlos Centeno, MD, CentroRegional de Cuidados Paliativos, Hospital Los Mon-talvos, 37192 Salamanca, Spain.

246 Centeno et al. Vol. 24 No. 2 August 2002

teams that work specifically with terminal pa-tients, publishing their data and facilitatingcommunication among professionals. Previ-ously, two similar surveys had been carried outin 1997

8

and 1998,

9

and their results were pub-lished in specialized journals.

10,11

These threestudies were promoted by the Sociedad Es-pañola de Cuidados Paliativos (SECPAL) andwere carried out from the University of Vallad-olid. Some descriptive results have been pub-lished in monographs, such as the Directoriode Cuidados Paliativos. The present articlecontains the analysis and discussion of themost significant data from the Directorio deCuidados Paliativos 2000

12

and represents anoverall assessment of the development of pal-liative medicine in Spain.

In other European countries, studies on thedevelopment of palliative care programs havealso been undertaken

13–15

and results on loca-tion and structure have been published in Di-rectories.

16–18

The main difference between theSpanish Directory and those of other Euro-pean countries is that the former includes dataon annual activity, as well as the names of thepeople involved in each team.

Methods

A “Palliative Care Program” was defined asthe home or hospital care system whose maingoal is the care for terminal patients, whetherthey suffer from cancer or other pathologies.Each program should have at least one doctorand a nurse. Oncology and/or hematology ser-vices, pain units, and home care teams werenot included if they did not have specific pro-grams or palliative care units.

Additional information about new programswas requested from the coordinators of pro-grams identified in previous Directories; themembers of SECPAL; the board of directors ofthe AECC; the people in charge of a catholicreligious order with palliative care units in hos-pitals: the Orden Hospitalaria de San Juan deDios (OHSJD); and members of Palliative CareWork Group at the Ministry of Health. All thedata collected amounted to 238 programs,which were the object of the study.

The survey asked for information pertainingto the year 1999. The following variables wereincluded: location, structure, staff, care activ-ity, developmental phase, as well as a brief

description of the history and projects of theprogram. The collection of the surveys was car-ried out through regular mail and fax as wellas through the SECPAL website (http://www.secpal.com) where the questionnaire could befilled out on line. The programs that did notanswer had the survey mailed twice more and ifno response was obtained, then they were con-tacted by phone to confirm that they had re-ceived the questionnaire.

Results

The questionnaire was first sent out in De-cember 1999 to the 238 identified teams. Outof the 200 that answered, 195 fulfilled the re-quirements to be considered palliative careprograms. The remaining 38 had to be con-tacted by telephone. Of these, only 11 fulfilledthe requirements. Therefore, of the 206 (195

�

11) palliative care programs that had beenidentified, 195 answered the survey—a re-sponse rate of 95%.

Table 1 shows the different palliative careprograms that are currently operating. Figure1 illustrates the development of palliative careunits in Spain over the last 15 years. There hasbeen an average increase of 18 new programsper year since 1990. Approximately half ofthese programs are for home-based patients,while the rest are for hospital inpatients. Theircurrent locations are university hospitals(43%); socio-sanitary centers (32%); commu-nity health centers (15%), and 8% in othertypes of centers (Table 2). The distributionamong the different Autonomous Regions isuneven. In Catalonia, there are a total of 95programs, which represent 46% of the whole

Table 1

Palliative Care Programs in Spain

Type of Program

n

(%)

PCU in hospitals 81 (40)Support teams in hospitals 21 (10)PADES 47 (23)AECC teams 41 (20)ESAD 6 (3)Private home care teams 5 (2)Other home care programs 5 (2)

PCU

�

palliative care units (always hospital care–based); PADES

�

Programa de Atención Domiciliaria y Equipo de Soporte de Cata-luña, Catalonia home care teams; AECC

�

Equipos Domiciliariosde Asociación Española Contra el Cáncer, Spanish AssociationAgainst Cancer home cancer teams; ESAD

�

Equipo de Soporte deAtención Domiciliaria, home care support teams.

Vol. 24 No. 2 August 2002 Spain 247

country. The National Health System owns62% of the palliative care programs; 34% be-long to private entities such as AECC orOHSJD, concerted with the National HealthSystem; and the remaining 4%—that is, 8teams—are run privately (Table 3).

We have data from 94 hospital care pro-grams from over 102 located: 77/81 palliativecare units (with own their own setting andbeds) and 17/21 support teams (mobile teamswithout rooms or their own beds). Most sup-port teams assist mainly cancer patients andare located in Catalonia. Some data from 77palliative care units are shown in Table 4.Many palliative care units have additional re-sources: consulting or clinic room (62%), dayhospital (40%), 24-hour telephone service(59%), and collaboration of volunteers (61%).Fifty-three percent of the hospital programshave their own home care team or work in co-operation with home teams. Ninety-one of theprograms have teaching programs: 25% formedical students, 75% for nursing students,and 46% for graduate students.

Activity and structure data are available for90% of the home care teams, that is, 94 out of104. Eighty-four percent of them are part of acoordinated system or have some type of agree-

ment with a hospital for patients who need toremain hospitalized (Table 5). There aredifferent types of home care teams. The mostnumerous are the Programas de AtenciónDomiciliaria y Equipo de Soporte (PADES;“Catalonian Home Care and Support Teams”),which are exclusive to the public system in Cata-lonia (43%) and the ones promoted by theAECC (41%). The rest are Equipos de Soportede Atencion Domiciliaria (ESAD; “Home CareSupport Teams”), which belong to the Na-tional Health System (6%), private teams(5%), and other teams (5%). Overall, 83%have concerted beds for hospitalization.Ninety-seven percent of the home care teamsreported to be qualified to teach: 14% formedical, 47% for nurses, and 51% for graduatestudents.

Overall, 1802 professionals were reported tobe working in palliative care teams: 399 doc-tors, 663 nurses, 398 nurse assistants, 91 psy-chologists, 134 special workers, 49 priests, 46physiotherapists, and 3 music therapists.

Discussion

The quality of the study is determined to agreat extent by the exhaustive identification ofthe teams as well as by the high response rateachieved (95%). This was possible due to the factthat there were several ways of contacting theunits in a short period of time. In addition to

Fig. 1. Evolution of the number of palliative care programs in Spain.

Table 2

Palliative Care Programs in Spain and Type of Center Where They Are Located

LocationHospital

n

(%)Home

n

(%)Total

n

(%)

University hospital 49 (48) 39 (38) 88 (43)Others hospitals: support hospital, hospital for chronic diseases

or socio-sanitary center48 (47) 18 (17) 66 (32)

Community health center 2 (2) 30 (29) 32 (15)Located in other centers 0 (0) 16 (15) 16 (8)No information about type of center 3 (3) 1 (1) 4 (2)Total programs 102 (100) 104 (100) 206 (100)

Table 3

Property of Palliative Care Programs in Spain

PropertyHospital

n

(%)Home

n

(%)Total

n

(%)

Public 73 (72) 55 (53) 128 (62)Concerted 26 (25) 44 (42) 70 (34)Private 3 (3) 5 (5) 8 (4)Total 102 (100) 104 (100) 206 (100)

248 Centeno et al. Vol. 24 No. 2 August 2002

mail and telephone, diverse means of communi-cation were available, including, for the first time,the SECPAL website, through which 21% of thequestionnaires were answered. The response ratewas higher than that of a similar study that wascarried out in the United Kingdom, which ob-tained between 74% and 84% of responses.

19

The development of palliative care in Spain

has been rapid: in less than 15 years, morethan 200 programs have started, with an aver-age annual increase of almost 20 over the last10 years.

20,21

Unlike the United Kingdom,where initially hospices proliferated; or Italyand the United States, where, on the contrary,at first mostly home care teams have devel-oped; in the case of Spain, there has been abalanced development between home and hos-pital teams. However, the geographic distribu-tion of palliative care in Spain is very uneven(see Figure 2), since Barcelona and its region,Catalonia, where 15% of the Spanish popula-tion resides, has 46% of the programs.

Around 60% of the programs have been pro-moted by public initiative, although most of

the teams have been developed in Cataloniathrough a program in concert with theWHO.

22

The remaining 40% of the programsdo not belong to the public health system,even though most of them have later becomeconcerted centers. At present, only a few Au-tonomous Regions such as Catalonia, Castileand Leon, and the Canary Islands have startedregional politics in these matters. The central-ized authority has established only a few teamsin the community. Therefore, what the datafrom this study reveal is the effort of isolatedgroups that have decided to start specific teamsto take care of terminal patients. The Spanishhealth care authorities have taken measures inorder to facilitate the development of palliativecare by enacting a National Plan for PalliativeCare.

23

This plan was approved in December2000 and is pending implementation.

With the national survey, we can estimatethe overall activity and the umbrella of pallia-tive care, as we requested data on new patients,percentage of patients with cancer attended,and patient deaths in each program each year(Tables 6 and 7). According to the data fromthe survey, 19,530 patients have been assistedat home by palliative care units, and it is esti-mated that 11,719 of them (60%) died athome and approximately 10% of the deathscaused by cancer take place at homes attendedby palliative care units. Home care is mainlycarried out by PADES teams in Catalonia, andAECC and ESAD teams in the rest of the na-tional territory. PADES teams take care of dif-ferent pathologies, not only cancer or termi-nally ill patients. This makes Catalonia theplace in Spain where the percentage of cancerpatients assisted by palliative care teams is thelowest (45%). This contrasts with the data fromcountries with a longer palliative medicine tra-dition, such as the United Kingdom, whereover 90% of the patients assisted by home orhospital teams are cancer patients.

Hospital programs attended 23,813 patients,out of which 15,924, namely, 67%, died in thehospital. Of those, 14,100 were cancer patients,which means that 16% of the patients who diedof cancer in Spain were attended by hospitalpalliative care teams. These data are similar tothose of the Minimum Dataset Activity, whichshow the activity of hospitals, as well as otherinformation about 189 hospital units and 326support teams in the United Kingdom during

Table 4

Activity of Palliative Care Units in Hospitals

Type of Hospital

a

/Data Acute

Medium–LongStay Total

Patients 13326 6946 20,272Cancer patients (%) 91% 74% 85.45%

(17,324)Beds 406 702 1108Median beds/unit 11 14 12

(range) (2–28) (3–40) (2–40)Average staying (days) 11 26 18

(range) (1–33) (13–173) (1–173)Median survival (days) 45 45 36

(range) (7–120) (7–215) (7–215)Deaths in the unit (%) 48% 63% 10,799

b

a

Data available from 77 palliative care units of the 81 located. Inhospitals there are also another 21 support teams (see explanationin the text).

b

Total number of reported deaths by cancer in the 77 units.

Table 5

Activity from Home Care Programs

Home Care Programs

a

104

Total number of patients 17,652Cancer patients,

n

(%) 12,033(68%)

Total number of deaths reported 9,968Patients attended at home until death (%) 56%Median survival reported in days

(average and range)42

(19–150)

a

Data available from 94 home care programs out of 104 located

Vol. 24 No. 2 August 2002 Spain 249

1998. The latter survey estimated that 50% ofthe patients who enter a palliative care pro-gram die in the hospital. The number of can-cer patients who die attended by a hospital pal-liative care program in the UK is 18%.

The data in our study only mention 21 hos-pital support teams, which indicates low devel-opment for this type of team, perhaps becausethey are located in university hospitals thathave not assumed the need for palliative careyet. In the United Kingdom, on the contrary,

Fig. 2. Map of palliative care programs in Spain in 2000, with home care teams and hospital care teams.

Table 6

Estimations of Global Activity of the Palliative Care Programs in Spain

Programs

Programs that Report Number of Patients Attended

n

(%)

TotalPatients

Attended

Estimation of Patients Attended in

100% of Teams

PCU University Hospitals 29 26 (90) 8,122 9,059PCU in Other Hospitals 39 34 (87) 5,836 6,694PCU in Hospitals from OHSJD 13 13 (100) 2,572 2,572Support Teams 21 17 (81) 4,442 5,487Total Hospital Care Programs 102 90 (88) 20,972 23,813AECC Home Care Teams 41 41 (100) 5,207 5,207PADES 47 41 (87) 9,634 11,044ESAD 6 2 (33) 1,185 3,555Private Home Care Teams 5 5 (100) 558 558Other Home Care Teams 5 5 (100) 1,068 1,068Total Home Care Programs 104 94 (90) 17,652 19,530

PCU

�

palliative care units (always hospital care–based); OHSJD

�

Orden Hospitalaria de San Juan de Dios (a Catholic Religious Order); PADES

�

Programa de Atención Domiciliaria y Equipo de Soporte de Cataluña, Catalonia home care teams; AECC

�

Asociación Española Contra el Cáncer,Spanish Association Against Cancer; ESAD

�

Equipo de Soporte de Atención Domiciliaria, home care support teams.

250 Centeno et al. Vol. 24 No. 2 August 2002

there are 326 support teams and 189 hospitalunits, almost double the number of supportteams. Likewise, Spain does not have day careservices for patients yet, while in the UnitedKingdom there are more than 200. Overall, theaverage length of stay at the hospital units inSpain is higher (18 days) than in the UnitedKingdom (13 days).

With the data available from cancer deaths,we can estimate that the global coverage of pal-liative care in Spain is 26% (Table 7). This esti-mate does not consider cancer patients whodied outside of a program but had palliativecare support at other times, or noncancer pa-tients attended at any time.

The situation of palliative care in other Eu-ropean countries is diverse, but the number ofbeds available for palliative care may be oneway of comparison (Table 8).

7

In Spain in2000, where there are 39 million people, thereare 1105 palliative care beds in 81 units (3.1beds per 100,000 inhabitants) while, with non-updated previous data, in the United Kingdomthere were 3196 beds for a population of 58million (5.5 beds per 100,000 inhabitants).These figures should be evaluated in terms ofage, family structure, and dispersion of thepopulation of each country, because these vari-

ables may change the need for beds for termi-nal patients according to social factors.

The number of professionals who work in pal-liative care programs in Spain is very high. TheDirectorio indicates that 1802 people work spe-cifically for terminal patients. Furthermore, newdisciplines are being included in palliative careteams, such as occupational therapy and musictherapy. Overall, one of the main characteristicsof these palliative care programs is their multi-disciplinary attention.

In summary, the data in the Directorio 2000show that in Spain, palliative medicine has un-dergone an important development, even thoughit presents an uneven geographical distribu-tion. The level of coverage for cancer patients,the diversity of the resources, the activity rates,the size of the units, and so forth, are parame-ters that are getting closer to those of countrieswith a longer palliative care tradition such asthe United Kingdom.

Acknowledgments

The authors gratefully acknowledge the in-valuable help of the many palliative care pro-grams in Spain who contributed with their an-swers to this study. We thank Miguel Martínezfor secretarial support and Beatriz Centeno-Cortés for assistance in the translation. This re-search was partially supported by Sociedad Es-pañola de Cuidados Paliativos (SECPAL), AstaMédica España, and the University of Valladolid.

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Table 7

Palliative Care Coverage for Cancer Patients in Spain from Mortality Data

Program

Estimation ofDeaths from all

Pathologies

a

(

n

)

Estimation ofDeaths from

Cancer

a

(

n

)

Palliative CareCoverage for

Cancer Patients

b

(%)

Hospital care programs 15,924 14,100 10%Home care programs 11,719 8,834 16%Total all programs 27,643 22,934 26%

a

Extrapolation at 100% from data of 154 programs (75%) that communicated mortality and % cancer patients attended.

b

The mortality of cancer in Spain is 89,204 patients per year.

Table 8

Beds for Palliative Care inSeven European Countries

a

Country Beds Beds/Inhabitant

United Kingdom 3,196 1/17,866Belgium 358 1/28,212Switzerland 298 1/29,530Spain 1,105 1/35,294Germany 989 1/82,812Low Countries 119 1/131,092Italy 30 1/191,333

a

Table from Clark

7

with Spanish data updated from Directorio 2000.

Vol. 24 No. 2 August 2002 Spain 251

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