regional palliative care program in extremadura: an effective public health care model in a sparsely...

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Special Article Regional Palliative Care Program in Extremadura: An Effective Public Health Care Model in a Sparsely Populated Region Emilio Herrera, MD, Javier Rocafort, MD, Liliana De Lima, MHA, Eduardo Bruera, MD, Francisco Garcı ´a-Pen ˜a, MD, and Guillermo Ferna ´ndez-Vara, MD Extramaduran Health Service (E.H., J.R., F.G.-P.), Me ´rida, Extremadura, Spain; International Association for Hospice and Palliative Care (L.D.L.), Houston, and Department of Palliative Care and Rehabilitation Medicine (E.B.), University of Texas M. D. Anderson Cancer Center, Houston, Texas, USA; Regional Ministry of Health (G.F.-V.), Government of Extremadura, Me ´rida, Extremadura, Spain Abstract The Regional Palliative Care Program in Extremadura (RPCPEx) was created and fully integrated into the Public Health Care System in 2002. The local health care authorities of Extremadura (a large sparsely populated region in the west of Spain with 1,083,897 inhabitants) decided to guarantee palliative care as a basic right, offering maximum coverage, availability, and equity, functioning at all levels of assistance and based on the complexity of the case. The program provides full coverage of the region through a network of eight Palliative Care Teams under the direction of a regional coordinator. The mobile teams work in acute hospitals and in the community. This paper describes the program, using qualitative and quantitative indicators of structure, process, and outcome. Qualitative indicators assess, among others, the performance of the regional network, including the outcomes of the quality, training, registry, treatment, and research groups. Quantitative indicators applied consisted of the number of professionals (1/26,436 inhabitants), number of patients (1,635/million inhabitants/year), number of activities/million inhabitants/year (6,183 hospital and 3,869 home visits; 1,863 consultations; 14,748 advising services; 11,539 coordination meetings; and 483 educational meetings), cost of care (V2,242,000 per year), and opioid consumption (494,654 daily defined doses/year). Four years after the planning process and three years after becoming operational, the RPCPEx offers an effective and efficient model integrated into the public health care system and is able to offer comprehensive coverage, availability, equity and networking among all the structures and levels of the program. Several structural and organizational tools were developed, which may be adopted by other programs within the scope of public health. The provision of palliative care should not be conditioned by the patient’s geographical location, his or her condition or disease or on the ability to pay, but on need alone. This model has successfully implemented palliative care in a region that offered many challenges, including limited resources and a disperse population in a geographically extensive region. These variables are also common in many rural areas in developing countries and the regional palliative care program offers a flexible approach that can be adapted to the needs and Address reprint requests to: Emilio Herrera, MD, Servi- cio Extremen ˜o de Salud, Merida, Extremadura, Spain. E-mail: [email protected] Accepted for publication: February 14, 2007. Ó 2007 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. 0885-3924/07/$esee front matter doi:10.1016/j.jpainsymman.2007.02.021 Vol. 33 No. 5 May 2007 Journal of Pain and Symptom Management 591

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Page 1: Regional Palliative Care Program in Extremadura: An Effective Public Health Care Model in a Sparsely Populated Region

Vol. 33 No. 5 May 2007 Journal of Pain and Symptom Management 591

Special Article

Regional Palliative Care Program inExtremadura: An Effective Public Health CareModel in a Sparsely Populated RegionEmilio Herrera, MD, Javier Rocafort, MD, Liliana De Lima, MHA,Eduardo Bruera, MD, Francisco Garcıa-Pena, MD,and Guillermo Fernandez-Vara, MDExtramaduran Health Service (E.H., J.R., F.G.-P.), Merida, Extremadura, Spain; International

Association for Hospice and Palliative Care (L.D.L.), Houston, and Department of Palliative Care

and Rehabilitation Medicine (E.B.), University of Texas M. D. Anderson Cancer Center, Houston,

Texas, USA; Regional Ministry of Health (G.F.-V.), Government of Extremadura, Merida,

Extremadura, Spain

AbstractThe Regional Palliative Care Program in Extremadura (RPCPEx) was created and fullyintegrated into the Public Health Care System in 2002. The local health care authorities ofExtremadura (a large sparsely populated region in the west of Spain with 1,083,897inhabitants) decided to guarantee palliative care as a basic right, offering maximum coverage,availability, and equity, functioning at all levels of assistance and based on the complexity ofthe case. The program provides full coverage of the region through a network of eight PalliativeCare Teams under the direction of a regional coordinator. The mobile teams work in acutehospitals and in the community. This paper describes the program, using qualitative andquantitative indicators of structure, process, and outcome. Qualitative indicators assess,among others, the performance of the regional network, including the outcomes of the quality,training, registry, treatment, and research groups. Quantitative indicators applied consistedof the number of professionals (1/26,436 inhabitants), number of patients (1,635/millioninhabitants/year), number of activities/million inhabitants/year (6,183 hospital and 3,869home visits; 1,863 consultations; 14,748 advising services; 11,539 coordination meetings;and 483 educational meetings), cost of care (V2,242,000 per year), and opioid consumption(494,654 daily defined doses/year). Four years after the planning process and three years afterbecoming operational, the RPCPEx offers an effective and efficient model integrated into thepublic health care system and is able to offer comprehensive coverage, availability, equity andnetworking among all the structures and levels of the program. Several structural andorganizational tools were developed, which may be adopted by other programs within the scopeof public health. The provision of palliative care should not be conditioned by the patient’sgeographical location, his or her condition or disease or on the ability to pay, but on need alone.This model has successfully implemented palliative care in a region that offered manychallenges, including limited resources and a disperse population in a geographically extensiveregion. These variables are also common in many rural areas in developing countries and theregional palliative care program offers a flexible approach that can be adapted to the needs and

Address reprint requests to: Emilio Herrera, MD, Servi-cio Extremeno de Salud, Merida, Extremadura,Spain. E-mail: [email protected]

� 2007 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

Accepted for publication: February 14, 2007.

0885-3924/07/$esee front matterdoi:10.1016/j.jpainsymman.2007.02.021

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592 Vol. 33 No. 5 May 2007Herrera et al.

resources in different settings and countries in the world. J Pain Symptom Manage2007;33:591e598. � 2007 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc.All rights reserved.

Key WordsPalliative care, Spain, program development, organizational models, quality indicators,equity, access

IntroductionDuring the decentralization of public health

provision in 2001 in Spain, all regions weregranted jurisdiction over health care and re-sponsibility for the provision of palliativecare. As a public health principle, every citizenof Spain with a terminal condition has theright to receive care.1 However, the develop-ment of these services has varied greatly fromregion to region within the country.2,3

Extremadura, located in the western partof Spain, is a sparsely populated region(1,083,879 inhabitants in 41,602 km2 or 26inhabitants per square km). The ServicioExtremeno de Salud (SES) is the governmententity responsible for health care provision inthe region. The SES is structured into CentralServices (core government for the whole re-gion) and eight health districts, with dedicatedmanagement structures, primary care centers,and a referral acute hospital.

In January 2002, the Regional Governmentdecided that palliative care should be guaran-teed to all (oncological and nononcologicalpatients), offering full coverage, availability,and equity, based on the complexity of thecase. The Public Health Care system was re-sponsible for developing and implementingpalliative care at all levels (primary, specialized,and social health care). An expert in palliativecare was designated as the regional coordina-tor to develop the project. A palliative careprogram framework document was produced4

within three months.This plan was endorsed by both regional and

national scientific societies and the Interna-tional Association for Hospice and PalliativeCare (IAHPC). It proposed basic training ofprimary and specialized health care teams,the improvement and coordination of the dif-ferent levels of assistance, and the develop-ment of eight Palliative Care Teams (PCTs),one for each health district (Fig. 1).

During 2002, the required personnel wererecruited for each team, and they all receivedspecialist advanced training in palliative care.The Regional Palliative Care Program inExtremadura (RPCPEx)5 was set up and be-came active in January 2003, after 10 monthsof planning and fine-tuning. The joint effortof the regional government, scientific societies,professionals, and associations of users wascritical to make this possible.

This article describes the main characteris-tics of the RPCPEx, including its structureand organization, and summarizes the mainoutcomes four years after being implemented.

Material and MethodsA selected group of structure, process, and

outcome indicators were classified into

Fig. 1. Distribution of the PCTs in Extremadura.

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Vol. 33 No. 5 May 2007 593Regional Palliative Care in Extremadura

qualitative and quantitative parameters, basedon recommendations from the World HealthOrganization, the Spanish National Plan forPalliative Care, and other palliative care pro-grams. Table 1 includes the indicators usedin this analysis.

The structural parameters were taken fromthe files of the SES (2003e2005). The processparameters were obtained from the controlbook of the RPCPEx, a compilation of monthlystatistics. The outcome parameters were ob-tained from various databases, such as theSES’s Pharmacy Service, the registry, and theRPCPEx’s annual program objectives.

All quantitative data refers to the periodbetween January 1, 2003 and September 30,2006.

ResultsStructure Indicators

For the purpose of this analysis, we usedqualitative and quantitative structural indica-tors. Table 2 shows the qualitative components.

Quantitative Structural Indicators. The numberof professionals per PCT is determined by thepopulation of each health district. The totalnumber of doctors, nurses, and psychologists inthe program are 18, 17, and 6, respectively. Theratios of the same professionals per million in-habitants are 16.6, 15.7, and 5.5, respectively.One of the acute hospitals has six designatedbeds for palliative care. In addition, there arefive centers dedicated to intermediate care fora total of 30 beds, and 110 long-term beds in

nursing homes. Approximately one-third of theactivities in these centers are palliative carerelated.

Process IndicatorsWe also used qualitative and quantitative

process indicators for this analysis. Table 3summarizes the qualitative process indicators.

Quantitative Process Indicators. The total num-ber of activities carried out since the programstarted are 20,537 hospital visits; 4,238 clinicvisits; 18,822 home visits; 54,303 consultations;34,718 coordination meetings; and 1,589 edu-cational activities. In the last 12 months, therate of activity per million inhabitants was1,636 new patients; 6,183 hospital and 3,869home visits; 1,863 clinics; 14,748 consultations;11,539 coordination meetings; and 483 educa-tional meetings. On an average day, approxi-mately 450 patients are involved in theprogram. Of them, 200 receive daily follow-up visits by the PCT, including 20 patientshospitalized in acute hospitals.

Outcome Indicators

Achieved Coverage. Since the program started,the PCTs have seen 6,155 patients. In theyear 2005, the rate of new patients per millioninhabitants was 1,635 (100% of agreed stan-dard). They registered and cared for a totalof 1,411, 1,770, and 1,665 patients per millioninhabitants in 2003, 2004, and 2005,respectively.

Table 1Indicators to Describe a Palliative Care Program

Structure Process Outcomes

Quantitative Number of:TeamsProfessionals andbeds per million

inhabitants

Number of assistanceactivities:Home and hospital visitsClinicsConsultationsTraining sessionsOther

Achieved coverage by PCTs and the primary careprofessionals per million inhabitants

Costs of the programOpioid consumption in DDD

per million inhabitants

Qualitative Central coordination Regional coordinator AccessibilityOffice and PCTs:

LocationFunctionCoverage offered

Work groups EqualityInformation system VariabilityQuality ImpactParticipationResearch

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Table 2Qualitative Structure Indicators

Component Responsible for

The Central Coordination Office, under theleadership of a Regional Coordinator

� Overseeing the operation of the eight specialized teams described below� Directing the Regional Palliative Care Observatory, which includes

a research and evaluation program. The Regional Observatory is staffed bytwo full-time researchers (a biologist and a nurse), an administrativeassistant, and an epidemiologist� Overseeing the voluntary program directed by a social worker

Eight Specialized PCTs Located in each of the eight acute hospitals in the region. They are mobileand staffed by doctors, nurses, and psychologists. The teams providesupport to hospitals and the community, offering direct patient care andadvice to other health care professionals as needed. Each team offerscomprehensive coverage within their corresponding health district. Fig. 1illustrates the geographical spread of the programs throughout the region.

Accessibility, Equity, and Variability. Accessibil-ity,6 equity, and variability are measuredthrough indicators established from the an-nual evaluation plan of the Regional Monitor-ing Palliative Care Program. The firstpublished studies identified areas for improve-ment, showing some variability in the clinicalpractice among the different PCT members.7

Economic Evaluation and Costs of the Program.The total cost of the eight PCTs and the Cen-tral Coordination Office in the year 2004 wasV2,242,000 (V2.1 per inhabitant per year or0.2% of the total budget of SES). The costper patient was V633.46, and the cost of eachindividual process was V81.29 per hospitalvisit, V171.08 per home visit, V14.24 per con-sultation, and V30.06 for the coordinatingmeetings.

Opioid Consumption. In the year 2005, 494,654defined daily doses (DDD) of opioids wereprescribed by the Public Health System in Ex-tremadura (equivalent to 49.63 kg of oral mor-phine per million inhabitants). The resultantrate is 1.25 DHD (DDD per thousand inhabi-tants per day). Transdermal fentanyl was themost prescribed (385,801 DDD), followed bymorphine (95,299), oxycodone (7,170 DDD),methadone (3,409 DDD), and pethidine(2,976 DDD).

Impact on and Collaboration with the Global Develop-ment of Palliative Care. RPCPEx has promotedthe development of palliative care with exten-sive collaboration, both at the national (Can-tabria, Andalucia) and international levels

(IAHPC, Argentina, Colombia, Venezuela,Mexico, Chile, Cuba, and Portugal).

DiscussionPalliative care programs should be inte-

grated into public health care policies, withongoing evaluation of coverage, equity, and ac-cessibility while developing a comprehensiveprogram. In our case, results demonstrate animportant change with regard to the situationin Extremadura before 2003.2 In only 10months, a network of dedicated teams was setup. To achieve this, an expert in palliativecare was designated to organize the program,and with cooperation from administrators,health professionals, and users, was able to im-plement it.5 The description of an integratedsystem of palliative care requires not only clas-sical quantitative measurement, but also struc-tured qualitative categories, which facilitateunderstanding of its operation. There aresome examples of evaluation of costs,8 effec-tiveness,9 specific global parameters,10 andthe application of guidance criteria to therelief of the pain.11 Higginson offers quanti-tative, structural, process, and outcome vari-ables.12 Different authors have looked atpatient/family satisfaction. However, the lackof an international consensus on the globalparameters to evaluate this type of programis an important limitation.

With regard to the structure, we expressedthe coverage offered in terms of the geograph-ical area and the time frame. It should benoted that few publications address the ratioof professionals per population in which they

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Table 3Qualitative Process Indicators

In order to Process

Maintain cohesion of the program: � The regional coordinator monitors, directs, and provides guidance to all the PCTs.Each PCT is contractually linked to the District Manager in its health district. Theregional coordinator discusses the annual management contracts with each DistrictManager, including expected performance, assessment, and evaluations from eachPCT.� By implementing a program in five work groups, which comprise a mix of members

from the groups from each area, to maximize collaboration and team cohesiveness.The groups work in the following areas:- Training in annual program- Developing a registry through consensus on assessment tools- Developing treatment guidelines based on consensus- Improving quality by selection/measurement of criteria and indicators- Establishing an annual research program

Support an Information System by: � Maintaining a daily diary of activities completed by members of each PCT. The re-ports are integrated and analyzed by the Central Coordination Office. Processed dataare provided as feedback to the districts.� Starting in 2007, a new comprehensive registry of accumulated palliative care data

(RACPAL) will be implemented. This will enable the analysis of outcome parameters,such as symptom control, or the amount of medication prescribed by the doctors inthe program.

Improve quality: � The management contracts focus on:B Quality indicators chosen by the Quality Group and the regional coordinator

from the criteria of SECPAL.B Minimum levels of coverage in target populations, based on agreed standards:

- 3,000 patients registered per million inhabitants per year in primary care- 1,500 patients per million inhabitants per year registered by the PCT- 500 processes of acute hospitalization for each million inhabitants per year.

� A new Quality Model is being created, based on the EFQM System.� To diminish variability, the Treatment Group produces and publishes clinical

guidelines.Facilitate continuity of care: � Any clinical activity developed by a PCT is passed on to the rest of the health care

professionals involved in the case by using a single clinical chart.� Outside of normal hours, a telephone helpline staffed by specialists operates to

support other professionals, guaranteeing 24-hour coverage.Increase involvement and

participation in patient care:� The Training Group has organized basic/advanced training in palliative care, both in

the classroom and via e-learning.� More than 20 basic courses were attended by more than 600 primary care profes-

sionals. Additionally, 10 primary care doctors and nurses located in rural areas havereceived special training to extend coverage in the most remote areas. Numerousother medical professionals are continuously receiving practical training.� A Volunteer Plan is currently underway to promote social participation.

Foster and promote research: The Research Group is currently running research projects in the clinical,organizational, and management areas. Nine research projects have been prioritized.Interim results have already been presented in congresses (more than 30 presentationsand lectures) and published in peer-reviewed journals (four articles in the last year).

SECPAL ¼ Spanish Association of Palliative Care; EFQM ¼ European Foundation for Quality Management.

operate. Currently in Extremadura, there areeight PCTs (one for every 135,487 inhabitants)staffed by 41 professionals (one for every26,436 inhabitants). The European Associa-tion of Palliative Care (EAPC) recently pub-lished a classification of countries accordingto the number of specific resources, whichshows that, in Spain, there were 261 resourcesin 2006 (one for every 166,418 inhabitants).Eight European countries (Iceland, UnitedKingdom, Belgium, Poland, Ireland, Luxem-bourg, The Netherlands, and Armenia)showed higher rates than in Extremadura.13

In Spain, there are a considerable numberof PCTs, but with variable geographic distribu-tion.2 There are a number of excellent pallia-tive care resources, but only a few showsubstantial coverage and structure, as is thecase in Catalonia. In the first 10 years, the lat-ter program provided support for 6,200,000 in-habitants, with 122 different resources; 52 ofthem were home care support teams (one forevery 119,231 inhabitants); 50 were palliativecare units (one for every 124,000 inhabitants,11 of them were in acute bed hospitals, and39 were in the socio-health system); and 20

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hospital support teams (one for 258,333 inhab-itants).10 In the EAPC report, there were 1,622palliative care professionals in Spain (one forevery 26,799 inhabitants); a similar relativeratio applies to Extremadura. From the samereport, in the United Kingdom, to establisha comparison, there are 6,329 professionals(one for every 9,305 inhabitants), althoughthe number of doctors is similar to Spain,and (relatively) inferior to Extremadura. TheEdmonton Regional Palliative Care Programin Canada reported an efficient comprehen-sive system based on a tertiary palliative careunit, three palliative care hospices, and fourpalliative care support teams, directed by aregional palliative care consulting office.9

Political considerations and geographiccharacteristics determined the necessity to de-sign a dynamic and supportive care model.Therefore, our objective was to establish atleast one team in each health district. A largecentralized unit would have used up the entirebudget, without being able to provide coverageto all the population, so we deliberately startedwith a high penetration model in contrast toa structural model.

One negative aspect of this model is thelimited number of designated beds for palli-ative care (six in one acute hospital). Somepatients with severe conditions need to be re-ferred to acute hospitals without specific pal-liative care units. In the near future, we planto create at least two complete units (the ne-cessity of 50 beds per million inhabitants asa standard14 is mentioned in the literature,of which a 30%e40% should be located inacute hospitals).

Organizationally, the appointment of an ex-pert in palliative care as regional coordinatorwas an initiative of the SES that has been a suc-cess in terms of cohesion. Similarly, the workgroups offer two advantages: on one hand,the eight PCTs work under the same guide-lines, and on the other, they allow participa-tion of personnel in the decision-makingprocess.

The awareness of the number of patientsseen on a daily basis, the number of consulta-tions or visits made, in addition to descriptiveor finance data, is essential to establish theaverage range and appropriate ranking ofactivities for a specific population. The infor-mation system currently in use is evolving at

the present time, pointing us toward solutionsthat are capable of analyzing not only thequantity of activity, but also the quality and(real) efficiency in the relief of sufferingamong the patients, using a clinical electronichistory.

Palliative care research has traditionally beenlow key.15 Suitable planning, incorporatinga solid research structure, and cooperativework among several PCTs inside a coordinatedgroup, can give excellent results. In Spain thereare two well-established groups, CATPAL, inCatalonia, and IPALEx, in Extremadura.

Accessibility is a key area that demands in-volvement at all care levels. It is peculiar thatalthough most current palliative care pro-grams are oriented toward integrated models,in which PCTs act as support in complex cases,only a few include within their general evalua-tion the attention given by nonpalliative careprofessionals. In this respect, the primarycare level has to be the guarantor of the max-imum coverage for patients in need of non-complex palliative care, passing only to thespecialized team cases in which the difficultyexceeds the capacity of the professional tosolve the problem.16 Although there are dis-crepancies concerning this question, recentlypublished studies suggest that PCTs and pri-mary care professionals can strengthen theiractivity, without competition.17

The ‘‘Regional Observatory’’ facilitates thecoordination of the program and the evalua-tion of global outcomes, to ensure the visionof public health: ‘‘coverage, equity, and accessi-bility.’’ In all cases, an observatory should pro-vide the scientific methodology18 and theevidence to establish new areas for planningand measures of improvement.

It is difficult to identify the outcomes of totalcoverage in palliative care. Some authors usewide ranges and do not define indicators.19

We decided, after a consensus process, to usethe following general and PCT coverage stan-dards: 3,000 and 1,500 cases per million inhab-itants, respectively.

Financial control is essential. Costs of thepalliative care program have been published.20

In Extremadura, we express the core cost ofthe program and calculate the costs of activi-ties based on Relative Units of Value. Thefact that home visits turn out to be much cost-lier than hospital visits has a relationship to the

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Vol. 33 No. 5 May 2007 597Regional Palliative Care in Extremadura

amount of time invested in the displacement,as the calculation of the cost of hospital visitsby PCTs is independent of the costs generatedby the patient’s stay in the hospital, which is, ofcourse, much higher.21 The mean cost of theprogram per patient (V633) is not high. Nev-ertheless, we have not calculated the savingsin acute care facilities in the care of terminallyill patients as other authors have. In theEdmonton Regional Palliative Program, therewere estimated savings of $1,650,689 for pallia-tive care costs in 1996/1997 as compared to1992/1993.8

Looking at the prescription or consumptionof opioids, we noted parameters that give Ex-tremadura22 a prescription profile dominatedby transdermal fentanyl, similar to other coun-tries in Europe.23 Nevertheless, we think that itis necessary to reach agreement on whatshould be the ideal prescription profile ofa specialized team and what is the optimal pro-file of consumption of a patient in final stages.These, next to geographic variability in opioidconsumption, are two of the areas of investi-gation that have been initiated by theObservatory.

Cooperation between programs can only en-rich those who strive to use best practices. Thecurrent interchange programs are a good wayof ensuring that this happens. On a globalscale, the Declaration of Venice24 has pro-moted advances and cooperation betweencountries, with the intention of improvingglobal standards for research in palliative care.

ConclusionFour years after the planning process and

three years after it started operations, theRPCPEx offers a model that is effectively inte-grated into the Public Health Care systemand is able to offer comprehensive coverage,availability, equity, and networking among allthe structures and levels of the system. Severalstructural and organizational tools were devel-oped, which may be adopted by other pro-grams within the scope of public health. Theprovision of palliative care should not be con-ditioned by the patient’s geographical loca-tion, his or her condition, disease, or abilityto pay, but on need alone. This model has suc-cessfully implemented palliative care in

a region that offered many challenges, includ-ing limited resources and a disperse popula-tion in a geographically extensive region.These variables are also common in many ruralareas in developing countries and the regionalpalliative care program offers a flexible ap-proach, which can be adapted to the needsand resources in different settings and coun-tries in the world.

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