The “pain flare” phenomenon: a not-so-unusual side effect on palliative and anti-algica radiotherapy (RT).
MARIA JESUS MAÑAS GARCIA1, CHRISTIAN VILLAVICENCIO CHÁVEZ2
1PALIATIVOS. HOSPITAL DE BARCELONA, BARCELONA. 2CAREDOCTORS,
Paraplegia in a patient with schizophrenia
Mariela Rocío Rodríguez Rico1, Deborah Moreno Alonso2, Maria Labori Trias2, Montserrat Olmo-Plaza2
1Unidad de Cuidados Paliativos. Hospital Enrique Tornu, . 2Servicio de Cuidados Paliativos . Institut Català d’Oncologia , L’Hospitalet de Llobregat
We report the case of a woman with a history of chronic paranoid schizophrenia on treatment with various antipsychotic drugs and with significant family fragility who presented at the emergency room with paraplegia for the past few days. She was finally diagnosed with spinal cord compression due to advanced lung cancer. In this case report we want to highlight the importance of early identification as regards needs and complexity factors in order to optimize the multidisciplinary approach and resource interrelationships during the disease process.
Training on and application of the necpal instrument in the primary care setting
Carmen Santiago Trapero1, Enrique Arrieta Antón1, Leandro Maroto Gómez2
1Equipo de Atención Primaria. Centro de Salud Segovia Rural, Segovia. 2Equipo de Soporte de Cuidados Paliativos. Área de Salud de Segovia, Segovia
Introduction: Morbidity data related to chronic disease in the Segovia Health Area do not allow an understanding of the palliative care needs of patients and their families. The NECPAL CCOMS-ICO© project may represent an appropriate tool for the identification of patients with advanced chronic conditions who require palliative care in any of the health system resources.
Objective: To train professionals on the NECPAL tool and, via its application, to identify people who require palliative care, to describe their demographic characteristics, to gain insight into their health issues, level of dependence, and health care demands, and to identify the health care circuit involved in satisfying their needs.
Methods: An observational, descriptive, longitudinal, prospective study in a population sample from the Segovia Health Area attending Primary Care clinics from December 1, 2014 to May 16, 2015. Descriptive data for quantitative variables are expressed as mean and standard deviation. Descriptive statistics for qualitative variables are expressed as frequencies and percentages.
Results: Thirty-five professionals were trained. A total sample of 316 NECPAL-positive patients from rural areas was obtained, with a mean age of 84.8 years and a balanced distribution of men and women. Patients had high comorbidity levels, with 4.6 chronic conditions on average, use of 6 drugs, and high rates of health services frequentation.
Of these patients, 86% had visited their health center less than once a week, 64% received no home care visits, and 10% required 2 visits per week.
The mean number of hospital visits per patient was 1.6, most commonly to Neurology, Cardiology, Internal Medicine, and Geriatrics.
Conclusions: Training of professionals in the use of the NECPAL tool facilitates knowledge acquisition in the field of palliative care.
The NECPAL tool allows to identify patients with palliative care needs, and is useful for application by Primary Care teams without overloading their work schedule.
The profile of subjects identified as NECPAL-positive is that of a stable patient in their usual care setting, with low rates of active care demands, short (less than 15 days) episodic hospital care needs, and high medication use and health care resource utilization rates.
Compassionate communities in Colombia to support people facing advanced illness and end of life: joining efforts
Alicia Krikorian1, María Lucía Samudio2, María Clara Vélez3, Silvia Librada Flores4, Verónica Agudelo5, Mercedes Franco6
1Escuela de Ciencias de la Salud. Universidad Pontificia Bolivairana, Medellin. 2Facultad de Medicina, Departamento de Medicina . Universidad de La Sabana, Chía. 3Escuela de Ciencias de la Salud. Universidad Pontificia Bolivariana, Medellín. 4Programa Todos contigo. Fundación New Health, Sevilla. 5Facultad de psicología. Universidad Pontificia Bolivariana, Medellín. 6Programa Unidos por la Compasión. Fundación Cuidados Paliativos, Cali
Many middle-income countries are facing an advanced demographic change towards ageing. Caring for this heterogeneous population contends a challenge for health systems and requires a growing participation of the community considering the high prevalence of chronic diseases in the elderly, their frequent functional dependence and fragility which, altogether, impacts their quality of life and increases health costs.
The World Health Organization in the 1990s adopted a community public health approach seeking to empower the society in the care of their health. Since then, a social movement known as “Compassionate communities” has emerged, based on a principle that prioritizes the community´s wellbeing. The initiatives that promote the social inclusion of palliative care in everyday life are an example of these “communities that care” and that teach other how to care for a person facing end of life.
This article presents the background of compassionate communities and its importance to palliative care. It also describes the development of this movement in Colombia and details the individual and collective actions of the cities interested in joining efforts toward the wellbeing of people facing advance illness and end of life.
In a relatively short period, Colombia has successfully promoted compassionate actions in seven cities and has begun to develop networks not only locally but also nationally. It is hoped that many more will join this effort to complement and strengthen palliative care.
Palliative sedation with propofol in a palliative care unit in a tertiary hospital
Eduardo García Romo1, Beatriz Valle Borrego2, Victoria Galindo Vázquez1, Blanca Prieto Ríos1, Ana de Santiago Ruiz3, María Herrera Abián4, Álvaro Gándara del Castillo1
1Unidad de Cuidados Paliativos. Hospital Universitario Fundación Jiménez Díaz, Madrid. 2Urgencias. Hospital Universitario Severo Ochoa, Leganés. 3Unidad de Cuidados Paliativos. Hospital Centro de Cuidados Laguna, Madrid. 4Unidad de Cuidados Paliativos. Hospital Universitario Infanta Elena, Valdemoro
Background and objectives: The increasing number of patients cared for by palliative care teams gives rise to a growing number of complicated management situations such as, for instance, administering palliative sedation for a refractory symptom. Pluripathology, advanced age, polypharmacy, antineoplastic agents, and other additional factors (emotional, etc.) make it difficult to approach sedation when complicated by tolerability issues, potential drug-drug interactions, and emotional coping. In these situations resistance to commonly used sedatives such as midazolam or levomepromazine is not uncommon, and other drugs, unusual in the palliative care setting, are required including propofol. Lack of experience, usage difficulties, and fear of adverse events condition their sparse use despite their beneficial effects.
The primary goal of this study was to review the existing literature and to report the cases of several patients who required palliative sedation with propofol in a palliative care unit (PCU) at a tertiary hospital. Furthermore, two cases are reported of patients who died during sedation onset with this drug.
Based on the experience obtained a propofol dministration protocol was developed for complicated sedation in our PCU.
Materials and methods: A descriptive, retrospective study at the PCU of Hospital Fundación Jiménez Díaz (Madrid). The medical records of deceased patients cared for at the PCU from December 1, 2015 to September 30, 2016 were reviewed, and those of individuals who had required palliative sedation with propofol in a challenging situation were included in the study. Additionally, two patients who died during propofol induction outside the study period are also reported. The following was collected: sex and age; disease condition, psychiatric history, toxic habits, sedation indication, and psychological assessment; midazolam, neuroleptic and opiod doses prior to propofol administration; propofol dosage at the time of death; and time in days from sedation onset to death. Use of rescue medication within hours of propofol initiation and propofol induction dose were also recorded for the patients who died during sedation induction. Comments recorded in the medical history about the reason for profofol sedation were also collected.
Student's t-test was used for mean comparisons between independent groups.
Results: The records of the 299 patients who died within the study period, with a mean age of 75.8 years (SD: 11.2), were reviewed. Ninety-two patients (31%) required sedation during agony, with a mean time of 2.4 days (SD: 1.7) from sedation onset to death.
Four patients required sedation with propofol (4% of all sedated patients) because of a challenging situation. These cases had a significantly younger mean age (55.5 years, P25-75: 49.0-58.5; p = 0.01) and longer sedation time until death (7.5 days, P25-75: 5.6-8.6; p = 0.05).
Primary reasons for sedation included multiple physical symptoms and emotional suffering. All those who received propofol had previously needed other sedatives in high maintenance doses, and responded minimally or not at all to multiple rescues with other sedatives in the previous few hours.
Clinical guidelines are suggested, including recommendations and dosage, on the use of propofol for challenging sedation in the palliative care setting.
The patients who required propofol for difficult sedation were significantly younger and received sedation for a longer time. The high level of emotional suffering identified needs highlighting.
Factors associated with challenging sedation and midazolam resistance may help select and initiate a more effective sedative earlier on.
The propofol sedation protocol developed in our PCU recommends that maintenance sedation with propofol be initiated in low doses (preceded or not by low-dose induction), and then gradually titrated according to patient needs.
The bioethical principle of double effect should help us make decisions for patients where end of life is shortly expected.
Propofol use as sedative for difficult sedation should be further disseminated among PCUs.
Further studies are needed to clarify the uncertainties remaining in the use of propofol.
Palliative sedation in a Palliative Care Unit in a tertiary hospital: Is emotional or existential suffering frequent?
Eduardo García Romo1, Beatriz Valle Borrego2, Victoria Galindo Vázquez1, Pablo Sánchez Chica1, Esther Martín Molpeceres1, Bernadette Pfang3, Álvaro Gándara del Castillo1
1Unidad de Cuidados Paliativos. Hospital Universitario Fundación Jiménez Díaz, Madrid. 2Urgencias. Hospital Universitario Severo Ochoa, Leganés. 3Medicina Interna. Hospital Universitario Fundación Jiménez Díaz, Madrid
-Background and Objectives: Nowadays palliative care treatments are well recognized, and many patients are referred with intractable symptoms. Patients in agony with refractory symptoms require sedation. Use of sedation for purely emotional or existential suffering is controversial. The objectives of this study are:
-To report the frequency of sedation in agony in a Palliative Care Unit (PCU), the relationship with the underlying disease, and the symptoms motivating sedation.
-To review the medications and dosage used to implement sedation, and quantify time from sedation to death.
-To describe the use and dosage of opioids at the end of life.
-To analyze the cases of patients undergoing sedation due to emotional or existential suffering.
-Material and methods: A retrospective study of deceased patients at the PCU in the Fundación Jiménez Díaz Hospital between December 1st 2015 and September 30th 2016 was performed. Registered variables included age, type of underlying disease, need of sedation during agony, main symptoms motivating sedation, medication used for sedation, dosage at the time of death, time between beginning of sedation and death, use of opioids and dosage of opioids at the time of death. Clinical records of patients sedated due to emotional or existential suffering were reviewed, and psychiatric and psychological assessment and the decision-making process for sedation were described. We used data query in Access XP, and statistical analysis software package SPSS v15.0 in order to analyze results. Fisher´s exact test and t-test were used to prove statistical significance.
-Results: 299 patients were included (average age 75.8 years, SD 11.2). There were 234 oncological patients (78%), and 63 patients (21%) were non-oncological. Two patients simultaneously belonged to both groups.
92 patients required sedation during agony (31%): 84 oncological and 8 non-oncological patients. There was a statistically significant (p<0,001) difference between the use of sedation in oncologic and non-oncologic patients.
The main symptoms motivating sedation were delirium (34 patients, 37%), emotional or existential suffering (15 patients, 16%) and multifactorial (14 patients, 15%).
The principal medications used for sedation were midazolam (93%) and combined use of a benzodiazepine and a neuroleptic drug (67%). The average dose at the time of death was 40.6 mg/day for midazolam and 90.5 mg/day for levomepromazine. Average time between beginning of sedation and death was 2.4 days (SD 1.7).
Opioids were prescribed in 95% of sedated patients, mainly morphine via a syringe driver, with a median dose of 41.7 mg/day.
The average age of patients with emotional or existential suffering was 67.1 years-old (SD 10.2). Psychiatric or psychological assessment was performed in 87% of these patients and 80% of sedations were performed on the basis of patients’ explicit consent.
-Conclusions: One third of patients in the PCU required a palliative sedation in agony. Oncological patients had a statistically significant higher demand for sedation. Delirium and emotional suffering were the main reasons used to justify sedation during agony.
It is frequent to use benzodiazepine and neuroleptics together when sedating in agony. The average doses of midazolam and levomepromazine at the time of death were similar to those of many other studies. The average time between starting sedation and death was around 48 hours.
Morphine via a syringe driver was the main opioid prescribed at the time of death of sedated patients. Not all patients required opioids at the time of death.
Use of sedation for emotional or existential suffering is frequent in the PCU, but is controversial for many authors. It is necessary to enable broader multidisciplinary care in all palliative care settings to improve quality of care for patients with profound psychoexistential suffering.
Validation of the scale of uncertainty in illness in caregivers of patients in palliative care.
Mauricio Arias Rojas1, Sonia Carreño Moreno2, Juan Rafael Lopez3
1Facultad de Enfermería . Universidad de Antioquia, Medellin. 2Facultad de Enfermería . Universidad Nacional de Colombia, Bogota . 3Servicio de Oncología. Hospital Universitario Nacional , Bogotá
Introduction: the Illness Uncertainty Scale is a tool available to the nursing professional to measure the uncertainty that people experience in relation to the disease. Family caregivers of patients in palliative care experience high levels of uncertainty due to their relative's illness. Currently there are no validated tools in the Spanish language to measure the uncertainty in caregivers of patients in palliative care.
Objectives: to adapt and validate the Scale of Uncertainty in Illness, family caregiver version, in family caregivers of patients in palliative care in the Spanish language and in the Colombian context.
Materials and Methods: a methodological study carried out with family caregivers of patients in palliative care. Three phases were carried out in the process of adaptation and validation: 1. semantic and cultural adaptation with 20 family caregivers. 2. construct validity and 3. internal consistency. The data of these last two phases were determined with a sample of 300 caregivers. Confirmatory factor analysis tests were applied, and Cronbach's alpha test for internal consistency.
Results: in the semantic adaptation, the total percentage of comprehension of the items was above 87%. The results of the confirmatory factor analysis showed 4 factors that confirmed the dimensions of the instrument in its original version. However, 5 items were eliminated because they were not adjusted to the dimensions found. The internal consistency showed a Cronbach's alpha for the total scale of 0.72.
Conclusion: the Uncertainty in Illness Scale has acceptable validity and reliability tests, and can be used in family caregivers of patients in palliative care in the Colombian context.
Characterization of people attended Palliative Care in Primary Health Care in Cerro Navia - Chile
Denisse Parra-Giordano1, Pilar Andrea Cornejo Rivas2, María Inés Ferrada Carrasco2, Rocío Gabriela Gómez García2, Cristina Yolanda Muñoz del Pino3
1Departamento de Enfermería. Universidad de Chile, . 2Escuela de Enfermería Universidad de Chile, Santiago. 3Escuela de Enfermería Universidad de Chile, Pedro Aguirre Cerda
Objetivo: Describir las características sociodemográficas y clínicas de las personas a las que se les brindan cuidados paliativos en APS durante visitas domiciliarias en la comuna de Cerro Navia, a través de una investigación Cuantitativa, obtenida de bases secundarias durante el periodo julio 2017- junio 2018.
Método: investigación cuantitativa, de diseño no experimental, transversal, descriptiva, con paradigma crítico. El estudio se realiza mediante la revisión de fuentes secundarias (registros de atenciones) de las personas atendidas en el Programa de Dependencia Severa en los distintos CESFAM de Cerro navia durante el periodo de julio de 2017 y junio de 2018. Se analizaron los datos sociodemográficos y clínicos de los personas, tales como edad, género, ingreso económico, parentesco del cuidador/a y género, patologías y si el cuidado era a personas oncológicos o no. Para el análisis de información se utilizó una matriz en el programa Microsoft Excel.
Resultados: Se revisaron 539 fichas, de los cuales 436 cumplieron con los criterios de inclusión, con una mediana de 78 años de edad, una dependencia severa con 61.47%, una mayor prevalencia de FONASA B con 64.45%, cuidadores con prevalencia en el sexo femenino con 78.67% en donde el parentesco mayor de ellos fue “hija”, y de un total de la población el 85% contaba con enfermedades crónicas como su principal patología para ser atendida dentro del programa Dependencia Severa.
Conclusiones: Se identificó que la población atendida en el programa de dependencia severa mayoritariamente posee patologías crónicas, por lo cual la entrega de CCPP debería extenderse a la población con enfermedades crónicas.
Mediation at the end of life in advanced diseases
Pilar Munuera Gómez1, Anna Novellas Aguirre de Cárcer2
1Facultad de Trabajo Social. Universidad Complutense de Madrid, Madrid. 2Asesora en intervención psicosocial del Observator. Qualy. Instituto Catalán de Oncología,
The possibilities of mediation are presented in response to the management of individual, family and social conflicts that patients in a terminal or advanced situation have. The use of conflict resolution techniques is necessary in advanced diseases to implement communication between family members and professionals to reach agreements in decision making at the end of life. People who participate generally manage to reduce the emotional cost and the probability of litigation disappears by increasing the quality of care.
Addressing issues related to prolonged care, through a mediation process helps to respect the values of all stakeholders, aims to provide quality at this time. The mediator transforms the formulation of the problem into the opposing parties, separating the person from the problem. This change makes the problem more manageable, which allows the positive management of conflicts that arise when respecting the people involved. The new perception of the problem is built from the recognition of people facing the problem, which can be faced with the logic of reaching an agreement that benefits everyone.
Mediation helps to focus on the common interests that people show in decision-making, based on objective criteria that benefit families facing the end of their loved one's life. This achievement favors dialogue and respect for the decisions made.
Do palliative care proffesionals know about advanced care planning document? a critic review
Joana Maria Julià-Móra1, Miguel Ángel Rodríguez-Calero2
1equipo de soporte hospitalario en atención paliati. Hospital de Manacor, Manacor. 2departamento de Enfermería y Fisioterapia. Universitat de les Illes Balears,
Rationale: 'Previous instructions' or 'Advance directives' document (PI/ADD) constitute a group of formal documents in which a patient can express the way he/she would like to die or be treated in the last days of life. These documents ensure patients’ final wishes will be considered and respected. The emerging trend of Advance Care Planning appeared in 1998, and the ADD was proposed in this context as a broad-based communication effort, which requires that healthcare professionals have proper training for end of life care. In this respect, previous studies show that inadequate training with regard to end of life care, especially in critical care units (ICU), hinder communication skills and attitudes, provision of care and finally, preservation of patient dignity during the process of death.
Objective: To analyse the competency (knowledge, skills and attitudes) about PI/ADD among physicians and nurses of ICUs in the region of Madrid.
Design: Cross-sectional study.
Place and timing: Nine hospitals in the region of Madrid, from October to December 2010.
Participants: All physicians and nurses from all adult ICUs of the nine participating hospitals constituted a convenience sample.
Instrument: An anonymous, structured, self-completed ad hoc questionnaire was sent to participants with dichotomous and Likert scale variables.
Data collection and analysis: Socio-demographic variables, as well as knowledge, skills and attitudes-related variables were collected. Previous to data collection, medical and nurse supervisors were contacted, information sessions carried out and informative posters displayed in participating units. The questionnaires were distributed through key informants and deposited in closed boxes after completion. Previous informed consents were obtained; the study was approved by the Committee of Clinical Research Ethics of San Carlos Hospital, Madrid.
Qualitative variables were described with absolute and relative rates and percentages according to categories. Association analysis included chi-squared and exact Fisher tests. A confidence interval with 5% error was applied, using the statistic package SPSS v. 18.0.
Results: A total of 649 questionnaires was delivered and 331 of them were sent back during the pre-established period of 3 months. The response rate was 51%. As for socio-demographic variables, 73,4% (253) of responders were women and 67,2 % (222) were older than 31 years old; 20,5% (68) of professionals were physicians and 79,5 % (263) were nurses. Regarding knowledge, 64,4% of participants reported not to know about the different documents available for patients to formalise their last wills. With respect to concrete measures included in the PI, such as the limitation of therapeutic effort, palliative care, organ donation, rejection of therapeutic obstinacy and the assignation of a legal representative, only 9,7% of professionals knew all of them. 82,8% of participants believed that ADD was a useful instrument for professional decision-making. 50,2% believed ADD were not respected. 85,3% of physicians would respect ADD in case of vital emergency, in contrast to 66,2% of nurses (p=0,007). Only 19,1% of physicians and 2,3% of nurses actually knew whether the patients they had in charge at the moment had a ADD or not (p<0,001).
Conclusions: Although healthcare professionals present a low level of knowledge about PI, they show a favourable attitude about their utility. However, most of the participants do not actually know if their patients have a ADD and some professionals, even when they know about the existence, would not respect it in case of an emergency. In this regard, further training is required with relation to PI.