In the developed world, some 10,000 people per million population die every year. Some 70% of the total population lives through a period of terminal illness lasting several months before their eventual death, whether it be a type of cancer (2,500 cases per million population) or the final stage of deterioration of non-oncological illnesses (approximately 4,500 cases per million population) [1]. It has been accepted internationally that the largest proportion of healthcare costs incurred by a citizen are generated in the final months of life. We are therefore discussing the largest source of costs to the healthcare system, an issue to which insufficient attention has been paid. In these cases, both the symptoms themselves and the complexity of accompanying circumstances cause a high degree of suffering in the patient and a social and family crisis in his immediate environment, as well as incurring the largest share of healthcare expenditure in the life of each respective patient.
Palliative Care (PC) [2] has been scientifically demonstrated as a truly effective tool in both welfare and organisational terms, complementing appropriate medication and medical care with psychological, social and spiritual support for patients and their careers.
In addition, the final period of illness is accompanied in nearly all cases by a more or less prolonged period of functional deterioration, leading inexorably to the development of a state of dependence on the part of the terminally ill patient, often accompanied by tremendous socio-familial complexity. Thus, the enormous diversity of psycho-social factors that surround every case can generate a wide range of needs, of greater or lesser severity, which need to be attended to routinely, and which, conversely, do not fall within the competencies provided by the health system itself. In fact, such needs are better understood within the social sphere and often include, among others:
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Need for attention to patient dependency: assistance with performing the basic and instrumental activities of daily living; reducing as far as possible the loss of sensory capabilities, and facilitating measures which can compensate for such deterioration; training in habits that improve personal autonomy; early warning of loss of autonomy; measures for the safety and protection of the patient; and adaptation of the environment.
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Needs of carers and the patient’s social support network: information about available support services; training and capacity-building for professional and/or family carers; development of communication skills to facilitate dialogue with the patient; family rest and respite; reconciliation of care with the professional life of the carer; psychosocial support to prevent burnout; and the exchange of experiences with other carers.
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Protection of the patient’s social role: decision-making autonomy and the communication of the final will; companionship; spiritual expression; leisure and entertainment; privacy or intimacy; interpersonal and social relationships.
While the health system is aimed at ensuring comprehensive care for patients and families, addressing those aspects related to healthcare, and encouraging valid solutions to social problems, reality demonstrates that this is often insufficient. When healthcare teams conduct in-home visits, a solid care structure is required, capable of performing all necessary tasks. Indeed, the problem is two-fold: increasingly, such structures are dwindling as a result of the crisis in informal caregivers, while the assistance required, due to patient complexity, calls for an increasing degree of skill.
In effect, changes to the socio-demographic structure, the ageing population, and the increasing incidence of chronic illness, have been accompanied by the weakening of traditional social support networks, diminishing the available number of informal caregivers who, historically, would have offered in-home care as a matter of course [3].
The development of in-home care from the social sector and its expected growth since the entry into force of the Law for the Promotion of Autonomy and Care for People in a Dependent Situation [4] are not yet sufficient to meet current assistance needs. Furthermore, in the absence of clearly defined alternatives, they will evidently be inadequate to provide family support and patient care for increasingly complex cases in the future, especially if improvements to training procedures are not implemented.
Effectiveness and efficiency of palliative care at a global level
The incorporation of Support Teams for palliative patients into traditional models of patient care (primary attention, specialist care, emergency, residential centres) offers effectiveness in outcomes such as improving control of symptoms [5], reduction of health-care costs [6], appropriate process management, improvements in quality of life outcomes, and patient and family satisfaction [7, 8].
At the hospital level, Palliative Care (PC) support teams act with the advice and support of clinical professionals to resolve the specific and complex problems of terminal patients and ensure co-ordination between levels of care. The incorporation of these specialised teams has been demonstrated to effectively reduce the length of hospital stays [9].
This is one of the most commonly used indicators to measure the cost effectiveness of Palliative Care teams. The reduction of average stay length in a hospital patient is directly correlated with a decrease in both the total and indirect costs of hospital care, which is often unnecessarily prolonged [10]. One study conducted in the United States demonstrated a reduction in costs of US$1.8 million per year after the introduction of PC teams in the hospital [9]. Another study, carried out in Spain, found a reduction in the average length of hospital stay, from 25.5 days to 19.9 days, which coincides with the averages of other studies [11]. This study was conducted over two different time periods, one in 1992 under a traditional care regime and one in 2001 with the presence of functional PC teams. Costs were reduced from 5,068 € per patient per year in 1992 under the traditional hospital model to 1,963 € per patient per year in 2001 [12].
The results of other studies conclude that a reduction of 40-70% in hospital costs could be achieved through the provision of specialised Palliative Care support teams [13]. In addition to providing adequate symptom control, the interventions of PC support teams reduced the number of medical tests and interventions, as well as offering support to families, occasionally allowing them to leave the hospital with the security of relying on an onsite support team [14].
Similar results have been encountered in hospital Palliative Care Units (PCUs), where the costs associated with patient care are lower than those in acute care hospitals. In Smith’s 2006 study [15], a cost reduction of 57% was achieved under the Palliative Care mode. Similarly, in a comparative study between PCUs and hospital units, the average cost per patient in the PCU was calculated at US$700 per day, compared with a cost of US $2,500 per day in Intensive Care units [16]. Significant reductions in hospital admissions have also been found in comparative studies in other countries [17]. In addition, as the PCUs are used in the most complex cases, the consistency and effectiveness demonstrated in the follow-up of patients in acute crisis has facilitated a reduction in hospital admissions, visits to emergency departments and intensive care units [17]. Early identification of patients in terminal stages and their transfer to specialised units allows for the appropriate planning of care and ensures its continuity, leading to effective control of symptoms, reduction of nonspecific treatments, and improvements in quality of life for both patients and their families
In the home environment, the teams offer support and advice to primary care professionals through consultation, direct assistance with the evaluation of patients and families, and the design of appropriate therapeutic intervention strategies.
This support ensures co-ordination between levels of care and improves the portfolio of primary care services [18] with regard to their responsiveness to the complexities of terminal patients. For its part, home-based palliative care has demonstrated effectiveness in:
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Reducing the number of hospital admissions, visits to emergency departments and other specialties, and hospital stays (reduction of 8 days on average) [19], which translates to a decrease in healthcare costs [20, 21]. In addition, this type of care allows for a reduction in unnecessary visits to primary care providers and in the length of stays in residential centres.
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The highest rate of deaths at home, which translates to an improvement in the satisfaction and quality of life of both patient and family. In addition to generating emotional and psychological advantages and permitting better control of symptoms, death at home translates to a reduction in hospital costs, which can result in a saving of some 4,000 € for hospital stays per patient [22]. Today, the majority of deaths occur in hospital, which could entail greater economic costs (around 58% currently, and rising to 65% by the year 2030). This is despite evidence showing that between 56% and 65% of patients prefer to die at home [23].
Thus, it is evident that Palliative Care experiences are proving successful in terms of quality, effectiveness, efficiency and cost savings. Indeed, it would be reasonable to anticipate that, based on current socio-demographic trends regarding the prevalence of chronic illnesses and the lack of family caregivers at home, social healthcare development models should begin to promote appropriate social welfare support of community networks in order to make them genuinely useful to healthcare.
At first glance, this solution may appear unfeasible, given that the increased cost of providing special training for home-based assistants would be nearly impossible to contend with in the current environment of socio-economic crisis and budgetary cuts. Nevertheless, hypotheses that defend the efficiency of social healthcare could make it clear that, through investment in better social care, the health system could encounter part of the solution for better healthcare, and, through improved efficiency, reduce overall healthcare costs over time.
Despite the fact that the majority of patients within the Basque Country (60%) die in hospitals, hospitalisation does not always offer better quality of life. Furthermore, the practice of hospitalisation leads to the saturation of emergency services and intensive care units [19, 24]. As has been demonstrated in other studies consulted in the literature, the majority of people prefer not to have to die in a hospital, which is cold, routine, impersonal, and high-cost. Rather, people have a strong preference for dying at home, which suggests that patient care should be focused there. This, in turn, would generate a societal demand for staff to support terminal stage patients at home.
SAIATU program
The SAIATU in-home care program is a social innovation project launched in February 2011 in Guipúzcoa, with the aim of providing a set of in-home social support services to complement clinical palliative care, in order to improve comprehensive care for people with advanced and terminal illness and their families. This has entailed widening the scope of the classic model of primary care in palliative patients, expanding the traditional model to a cross-cutting action framework.
Currently, the program provides care in complex social situations, or in cases requiring attendance by clinical teams to provide appropriate symptom control, which requires the assistance of a social support network to facilitate the interventions of Osakidetza palliative care teams.
This new care model for Palliative Care patients forms part of an innovative approach, which aims to co-ordinate social services and healthcare in the field of palliative care. This approach is currently thriving in other health systems internationally, including the Canadian and British health systems, and seeks to provide both the best possible comprehensive care and efficiency in the provision of complementary health and social services [25].
SAIATU has been the first such experience in Spain, and the first internationally which combines the quantification, analysis and impact assessment of the reduction of healthcare resource usage by end-of-life patients, based on a pilot study of in-home social care for palliative care patients in the Basque Country.
The evaluation of the program, conducted in January 2012, has attempted to compare the difference in the intensity of health care provided to end-of-life patients in traditional services and in specialised Palliative Care services, but, for the first time, adding to the second group the effect of a social service trained in Palliative Care.
On the one hand, the pilot experience has been of enormous utility in properly channelling the program’s contribution to the real needs of the patients and their families, clarifying what should be the vision and mission of the program, and determining that SAIATU should position itself as a Specialised Social Program, in close co-ordination with the current health system (primary care, specialised care, and home hospitalisation).
On the other hand, the results of the pilot experience have yielded data suggesting that the SAIATU program:
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Reduces the consumption of health care resources on the part of program users.
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Facilitates staying at home for the patient, in compliance with patients’ preference for dying at home.
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Increases the number of home-based activities developed by Primary Care.
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Has yielded satisfactory outcomes for the families of patients questioned in the course of the study.
These results are highly striking and, if confirmed, would be of tremendous importance for improving the efficiency of the health system, and for the development of models for complementary action between the social and health sectors. However, with the current work, the results should be treated as the results of a descriptive and comparative study, retrospective in nature, and thus the scientific strength of the results is highly relative.
For this reason, a prospective study with greater sample size, enabling the validation with sufficient strength and validity of the results obtained in this work, is considered of great interest to society in general and the Basque country in particular. Such a study would be one of the first to provide clear evidence of the efficiency gains offered by complementary and co-ordinated action in the social and health sectors and, without doubt, the first worldwide in the field of palliative care.
General objective
To analyse whether a program of social intervention in palliative care (SAIATU) results in a decrease in the consumption of healthcare resources and cost by end-of-life patients, and produces a shift towards a more community-based model of care.
Specific objectives
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Describe the average profile of healthcare resource consumption of a retrospective cohort (patients who died from malignant neoplasm) in the last 30 days of life by diagnosis and age group.
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Quantify and compare the costs of the use of healthcare resources in the cohorts of patients with and without SAIATU intervention.
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Compare quality of life in the cohorts of patients with and without SAIATU intervention.