Editorial
Importance of the early identification of the palliative patient: Butterfly effect theory
Importancia de la identificación precoz del paciente paliativo: teoría del efecto mariposa
Noemí Sansó Martínez
Departamento de Enfermería y Fisioterapia, Universidad de las Islas Baleares, Palma, Balearic Islands, Spain
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las Islas Baleares, Palma, Balearic Islands, Spain" "identificador" => "aff0005" ] ] ] ] "titulosAlternativos" => array:1 [ "es" => array:1 [ "titulo" => "Importancia de la identificación precoz del paciente paliativo: teoría del efecto mariposa" ] ] "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0005" class="elsevierStylePara elsevierViewall">One of the greatest successes of developed societies is the increase in life expectancy which we have been experiencing throughout the last few decades. As a result, 75% of mortality is caused by chronic illessess.<a class="elsevierStyleCrossRef" href="#bib0120"><span class="elsevierStyleSup">1</span></a> It has been calculated that before 2020, chronic diseases will account for 60% of the overall disease burden, and will be responsible for 73% of deaths worldwide, even in developing countries where they will represent over 50% of the disease burden.<a class="elsevierStyleCrossRef" href="#bib0125"><span class="elsevierStyleSup">2</span></a></p><p id="par0010" class="elsevierStylePara elsevierViewall">This increasingly serious situation has forced our politicians and managers to come to terms with what has been called the “chronicity challenge”. Our society's “success” in achieving longevity must now be appropriately managed as there are more diseases, incapacity and their associated problems. A multitude of programmes and strategies have been created both in Spain and internationally to improve the approach to chronicity. The healthcare system urgently needs to change its model solely aimed at the cure of acute diseases in order for sustainability to ensue.</p><p id="par0015" class="elsevierStylePara elsevierViewall">Despite the abundance of references on this subject matter, reality continues inexorably. We continue to be highly effective in acute disease care but tremendously slow, complicated and scandalously ineffective in caring for chronic patients who present with several illnesses, who consume a great many drugs who have serious problems of self-sufficiency and who in many cases do not receive sufficient family or social support. The number of elderly persons who are more susceptible to suffering from chronic diseases will irredeemably increase, although chronicity must not be ignored in children and young people too.</p><p id="par0020" class="elsevierStylePara elsevierViewall">Within the group of chronic patients there is a particularly vulnerable subgroup: those people who present with such advanced chronicity that they require palliative care. We are not only referring to the patient in a terminal situation, but to those who present with an advanced chronic disease which is irreversible, with a prognostic of life limited to one or 2 years.</p><p id="par0025" class="elsevierStylePara elsevierViewall">There is a much higher number of people who are susceptible to receiving palliative care, under the definition of the World Health Organisation,<a class="elsevierStyleCrossRef" href="#bib0130"><span class="elsevierStyleSup">3</span></a> than if we focus solely on those who are at the very end of their lives. Specifically, in our immediately environment, we know from a study conducted in Catalonia, that 1.5% of the general population presented with the need for palliative care.<a class="elsevierStyleCrossRef" href="#bib0135"><span class="elsevierStyleSup">4</span></a> With regard to hospitalised patients we also know from the experience of prevalence in a municipal hospital in Mallorca that out of all admitted patients over 23% presented with palliative care critera.<a class="elsevierStyleCrossRef" href="#bib0140"><span class="elsevierStyleSup">5</span></a> There is now sufficient evidence to show that early initiation of palliative care in chronic advanced patients not only improves their quality of life and symptoms,<a class="elsevierStyleCrossRefs" href="#bib0145"><span class="elsevierStyleSup">6–8</span></a> but also lengthens their survival<a class="elsevierStyleCrossRefs" href="#bib0145"><span class="elsevierStyleSup">6,9</span></a> and, in any case, significantly reduces the presence of indicators of aggressive health practice at the end of their lives, according to the concept coined by Earle et al.<a class="elsevierStyleCrossRef" href="#bib0165"><span class="elsevierStyleSup">10</span></a> Even so, early identification of this palliative situation remains pending. Thanks to a recent study conducted by the Spanish Society of Palliative Care, we know that in Spain, the average patients cared for per year with palliative care amounts to 51,800.<a class="elsevierStyleCrossRef" href="#bib0170"><span class="elsevierStyleSup">11</span></a> This figure is very much below the number of people who are likely to receive palliative care (105,268 personas) according to the calculations made by McNamara et al.<a class="elsevierStyleCrossRef" href="#bib0175"><span class="elsevierStyleSup">12</span></a> Not all patients with palliative care needs require specific resources. Depending on their clinical and social complexity they may receive care by their regular care team. Despite this, the low number of patients attended to is outstanding and represents only 49.2% of all predicted cases.</p><p id="par0030" class="elsevierStylePara elsevierViewall">These difficulties increase in the cases of non oncological patients. This is probably due to 2 factors: on the one hand, the tradition of linking advanced oncological processes with palliative care and on the other, the added difficulty of identifying a final life stage process of patients who are not oncological. Three classical patterns of the final life stage have been identified,<a class="elsevierStyleCrossRefs" href="#bib0180"><span class="elsevierStyleSup">13–15</span></a> that of the patient with cancer, characterised by a phase in which autonomy is maintained, followed by a stage of rapid, predictable decline; the path following organ failure where there is a long period of functional limitations (between 2 and 5 years), during which flare-ups and crises may occur; and lastly the pathway of dementia and fragility which is much less predictable, characterised by a long phase of irreversible and progressive functional decline, with a final stage of very low physical and cognitive capacity that may last for years.</p><p id="par0035" class="elsevierStylePara elsevierViewall">The situation of people who have an advanced chronic disease needs to be better identified. Most strategies and programmes concentrate on stratification as a necessary requisite for comprehensive care. The population needs to be stratified in accordance with the situation of each individual and their health and social requirements so that cost effective interventions may be designed for the different patient groups adapted to these needs.<a class="elsevierStyleCrossRef" href="#bib0195"><span class="elsevierStyleSup">16</span></a> However, no systematic stratification system is enough in itself and it always requires the collaboration of health professionals. As Joan Carles Contel reported, stratification may be a support element in the identification of people with a high probability of being in this condition, but it requires assessment and clinical validation.<a class="elsevierStyleCrossRef" href="#bib0200"><span class="elsevierStyleSup">17</span></a></p><p id="par0040" class="elsevierStylePara elsevierViewall">Which care professional meets the best conditions to become an “active search engine” of new cases of advanced chronicity? Our nurses of course. They should be actively involved in early identification of palliative patients. However, having made this statement I am sure that a series of questions arise, as of yet unanswered, which could become arguments to the contrary. I shall thus attempt to answer them below:</p><p id="par0045" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Are valid tools available for identifying these people objectively?</span></p><p id="par0050" class="elsevierStylePara elsevierViewall">Yes. In the references there are over 150 assessment tools of palliative needs.<a class="elsevierStyleCrossRef" href="#bib0205"><span class="elsevierStyleSup">18</span></a> Specifically, in our environment the most tried and tested are those of NECPAL CCOMS-ICO©<a class="elsevierStyleCrossRef" href="#bib0210"><span class="elsevierStyleSup">19</span></a> and SPICT.<a class="elsevierStyleCrossRef" href="#bib0215"><span class="elsevierStyleSup">20</span></a></p><p id="par0055" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Does the identification of these patients form part of our skills? Can we diagnose them as palliative patients?</span></p><p id="par0060" class="elsevierStylePara elsevierViewall">The health regulation law<a class="elsevierStyleCrossRef" href="#bib0220"><span class="elsevierStyleSup">21</span></a> textually states that health professionals should be guided by service to society, the interest and health of the citizen to whom the service is offered, rigorous fulfilment of deontological obligations determined by the professionals themselves in keeping with the law in force and the criteria that must guide standard practice or, if applicable, the general uses known to their profession. This same law states that health professionals must offer the appropriate healthcare in accordance with health needs and how to make rational use of diagnostic and therapeutic resources, avoiding overuse, underuse and inappropriate use.</p><p id="par0065" class="elsevierStylePara elsevierViewall">As nurses we work with the person and their family, particularly primary care nurses who are aware of the family situation, the conditions of the home and even the desires, preferences and beliefs of their patients.</p><p id="par0070" class="elsevierStylePara elsevierViewall">We know that when the level of concordance has been studied between evaluators who have assessed the need for palliative care with the NECPAL CCOMS-ICO© tool a higher level has been observed with the nurses than the doctors in the study.<a class="elsevierStyleCrossRef" href="#bib0140"><span class="elsevierStyleSup">5</span></a> Although it would be preferable for a joint and consensual decision to be made by the team members, the nurse is the ideal professional to identify the situation and, whenever possible, discuss it with the rest of the team.</p><p id="par0075" class="elsevierStylePara elsevierViewall">The professional nurse's ability to autonomously classify the patient as in need of palliative care depends on how each autonomous community develops its chronicity and/or palliative care programme. These same arguments which we are developing could be used in those areas where this skill has not been established.</p><p id="par0080" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Are we not cutting short the life of those people who we identify as candidates for palliative care?</span></p><p id="par0085" class="elsevierStylePara elsevierViewall">This is a fear which many patients have but which a trained professional never would. The actual definition of palliative care already contemplates as one of its essential principles that no attempt at accelerating or delaying death is made. Evidence tells us that no shortening of life occurs and some studies even state that there is an increase in survival.<a class="elsevierStyleCrossRefs" href="#bib0145"><span class="elsevierStyleSup">6,7</span></a> We need have no fear here. A greater worry would be if we did not identify cases of advanced chronic diseases where the patients received futile and unnecessary treatments, adding nothing positive to their situation. Instead this would constitute an unjustifiable waste of healthcare resources and could lead to greater suffering. The application of palliative care to a patient identified as requiring it is nothing more than care based on evidence and as such, the exercise of good practice.</p><p id="par0090" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Isn’t the identification of these patients competition for the case study nurse manager?</span></p><p id="par0095" class="elsevierStylePara elsevierViewall">Many communities already have key figures in this improvement of care for chronicity and this is the case study nurse manager. This figure also works in identifying this type of patient as well as playing an essential role in the coordination of services to guarantee healthcare continuity. We cannot exclusively leave the identification of all patients in their hands, at least not for early identification. Both the case study nurse manager and the professionals of specific palliative care resources are benchmark professionals to consider as consultants in situations where we have some difficult in identification and/or in the patient's subsequent treatments.</p><p id="par0100" class="elsevierStylePara elsevierViewall">Obviously the reorganisation of the healthcare system to include chronicity is not only based on the specific identification and treatment of patients in complex or advanced situations. It requires many other actions, and specifically in the area of disease prevention and health promotion and the training of patients once they have presented with diseases. Improvements in how to determine health socially also need to be made. However, have chosen to focus on early identification, due to the capacity we have as nurses for putting into practice anything from the moment we decide to do it. This policy requires no great changes, or investments or plans. We know the patient, we work on indentifying their needs and establishing care plans accordingly. It is now time to attach value to this knowledge of the patient so that this also has an influence on action plans for other health professionals and/or on the clinical pathways to be followed in the system from now onwards. This implies the application of the “butterfly effect”,<a class="elsevierStyleCrossRef" href="#bib0225"><span class="elsevierStyleSup">22</span></a> on our environment, which is the idea that if there are 2 almost identical worlds, but in one of them there is a butterfly on the wing and in the other there is not, in the long term, the world with the butterfly and the world without the butterfly will end up being very different. In one of them a tornado may occur at a great distance and in the other it may not. It is the theory of how small things may affect the whole.</p><p id="par0105" class="elsevierStylePara elsevierViewall">As Professor José Miguel Morales recommends, health professionals should learn to “see” and “act” from the beginning, to prevent the population reaching the complex chronicity setting, actively exercising our skills in prevention and promotion, counteracting clinical inertia and learning to provide a response to complex, unpredictable situations.<a class="elsevierStyleCrossRef" href="#bib0230"><span class="elsevierStyleSup">23</span></a></p><p id="par0110" class="elsevierStylePara elsevierViewall">Please allow me to add some final questions for the reader to reflect upon. The subject matter is different but they are equally important since they deal with aspects related to the care of the professional who accompanies and cares for the people at the end of life. Disregard for this aspect may lead to greater dehumanising of the system. The scope of these questions could be the subject of another article. They are intended to serve as a positive argument and are the following:</p><p id="par0115" class="elsevierStylePara elsevierViewall">Would we as nurses suffer from less emotional stress if we cared for the people according to their real needs?</p><p id="par0120" class="elsevierStylePara elsevierViewall">Would we suffer less from burnout syndrome or compassion fatigue?</p><p id="par0125" class="elsevierStylePara elsevierViewall">Would we be more satisfied and experience less ethical dilemmas if we could offer patients with palliative care needs palliative healthcare?</p></span>" "pdfFichero" => "main.pdf" "tienePdf" => true "NotaPie" => array:1 [ 0 => array:2 [ "etiqueta" => "☆" "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as: Sansó Martínez N. Importancia de la identificación precoz del paciente paliativo: teoría del efecto mariposa. Enferm Clin. 2017;27:335–338.</p>" ] ] "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0015" "bibliografiaReferencia" => array:23 [ 0 => array:3 [ "identificador" => "bib0120" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Estrategia en Cuidados Paliativos del Sistema Nacional de Salud" "autores" => array:1 [ 0 => array:2 [ "colaboracion" => "Ministerio de Sanidad y Consumo" "etal" => false ] ] ] ] "host" => array:1 [ 0 => array:1 [ "Libro" => array:3 [ "fecha" => "2007" "editorial" => "MSC" "editorialLocalizacion" => "Madrid" ] ] ] ] ] ] 1 => array:3 [ "identificador" => "bib0125" "etiqueta" => "2" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Atención innovadora a las condiciones crónicas: más necesaria que nunca" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:1 [ 0 => "R. 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