Cuidado espiritual y tratamiento del sufrimiento en el paciente con Ca avanzadoSandra Milena Acevedo RuedaMD Residente 3er aoMedicina Interna UNAB-FOSCALAgosto de 2013

Cuidado espiritual del paciente moribundo

Cmo entender el trmino espiritual?

Irvin Yalom (Stanford):Hay dominios sobre el conocimiento que deben seguir siendo intuitivos.ciertas verdades de la existencia son tan claras que el argumento lgico ocorroborarlo empricamente parece gratuito

Espiritualidad no es con conocimiento sino con experiencia

Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncESPIRITUALIDAD

Does a chapter on spiritual care belong in a textbook on psychiatry in palliative medicine? How do we understand the term "spiritual"in this secular age? The reader may well feel at one with our colleague who commented, "When you use terms like spirit, you lose me. I really just do not understand what we are talking about! Alternatively, you may feel that the answers to these questions are self-evident, that all of lifemay be seen in spiritual terms, and you may respond with the observation of Irvin Yalom, professor of psychiatry at Stanford University, whohas written, "There are ... domains where knowledge must remain intuitive. Certain truths of existence are so clear that logical argument orempirical research corroboration seems highly gratuitous. Karl Lashley, the neuropsychologist, is said to have once commented: 'If you teach anAiredale to play the violin, you don't need a string quartet to prove it.' Ml Perhaps you would respond that the spiritual in life has to do notwith knowledge but with experience.

3

Espiritualidad es definida como:De o en relacin con el espritu cuestiones altamente morales

Latn Spiritus : respiracin aire, vida, alma, orgullo, coraje

Principio vital de las personas

Visin occidental antigua: es la mayor evolucin de la conciencia que contiene el cuerpo

Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncESPIRITUALIDAD

Spiritual is defined as "of, or pertaining to, affecting or concerning the spirit or higher moral questions."5 Spirit, from the latin spiritus, meaning breathing, breath, air, life, soul, pride, courage,6 has been defined as "the animating or vital principlein persons; the soul of a person, as commended to God, or passing out of the body, in the moment of death."5 It is widely understoodto be the aspect of our reality that is independent of matter; unconfined by the constrictions of time and space. In the modern Western view, the body contains the spirit, while a more ancient wisdom conceives the spirit as being the highest evolution of consciousness and containing the body. Spirit is matter incandescent.7 While some have drawn sharp distinctions between "spirit" and "soul,"8 in this chapter we use the term spirit as inclusive of both terms 4

Espritu y pensamiento religioso

Catolicismo: El reino de los cielos habita en t

Filosofo taoista Chuang-tzu: No escuches con tus odos, escucha con tu mente. Si no escuchas con tu mente, escucha con tu espiritu

Tradicin Budista: Nirvana La suprema paz est en mHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncESPIRITUALIDAD

The nature and capacity of the spirit has been expressed in religious thought. In the Judeo- Christian tradition, Jesus, a Jew, observed that"the Kingdom of Heaven is within you."14 The spirit is the pneuma of Christian writings.15 The Hindu Upanishads speak of Atman, the Spirit ofman, the Self in every one and in all.16 In the Buddhist tradition, Nirvana, as experienced by Buddha, is the Nirvana described in the BhagavadGita as "the peace supreme that is in me."17 The Taoist philosopher Chuang-tzu advocates, "Don't listen with your ears, listen withyour mind. No, don't listen with your mind, but listen with your spirit. Listening stops with the ears, the mind stops with recognition, but spiritis empty and waits on all things. The Way gathers in emptiness alone. 5

Gandhi

Si hemos de escuchar , Dios nos habla Nuestro propio lenguaje, cualquiera que fuese

Si tenemos odos para escuchar, cmo oiremosel espritu?Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

And yet Ghandi observed, "If we have listening ears God speaks to us in our own language, whatever the language be."29 "If we have listening ears"? How do we hear the spirit domain? However understood, we have all had experiences of that dimension of our being, a sense of oneness, unity, or transcendence; a sense of profound awareness, connectedness, silence, and peace. Elijah sensed the spirit not in wind, earthquake, or fire but in a still small voice.30 The Psalmist found the spirit everywhere and wrote, "Whither shall I go from thy Spirit? Or whither shall I flee from thy presence? If I ascend to heaven, thou art there! If I make my bed in Sheol, thou art there!"316

Salmista Elas

A donde me ir espritu?A donde huir de tu presencia? Si estoy en el cielo, ah ests t, si hago del solmi cama, ah ests tHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

And yet Ghandi observed, "If we have listening ears God speaks to us in our own language, whatever the language be."29 "If we have listening ears"? How do we hear the spirit domain? However understood, we have all had experiences of that dimension of our being, a sense of oneness, unity, or transcendence; a sense of profound awareness, connectedness, silence, and peace. Elijah sensed the spirit not in wind, earthquake, or fire but in a still small voice.30 The Psalmist found the spirit everywhere and wrote, "Whither shall I go from thy Spirit? Or whither shall I flee from thy presence? If I ascend to heaven, thou art there! If I make my bed in Sheol, thou art there!"317

La enfermedad, el objeto de la ciencia y la tecnologa, ha sido aceptado como el centro por excelencia de la atencin mdicaOtros aspectos (experiencia del paciente de dicha enfermedad) ha sido en gran medida ignorado o visto como de importancia secundariaHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncEl modelo mdico y el distrs espiritualillness y disease

As a prelude to examining how we might recognize and respond to spiritual distress, let us consider current attitudes concerning the physician's mandate and the goals of health care in general. Two papers are enlightening in this regard: Anthony Reading's classic "Illness and Disease"21 and H. Brownell Wheeler's landmark Shattuck Lecture, "Healing and Heroism."34 Reading has drawn attention to the importance of distinguishing between "illness" and "disease" if optimal health care is to be achieved. He points out that modern medical practice is based on a paradigm whose validity has generally passed unquestioned, that is, that "illness is the result of disease and is best dealt with by treating the underlying disease." Thus, "disease" (the various structural disorders of the individual's tissues and organs that give rise to the signs of ill health), the object of science and technology, has been accepted as the preeminent focus of medical care, and "illness" (the patient's experience of ill health) has been largely ignored or at most viewed as being of secondary importance, a simple by-product of disease. But disease is neither necessary nor sufficient to explain illness.21 For the patient, it is his illness that he complains of and that causes him to seek medical attention. It is illness, not disease, that is his concrete reality.And how the illness, not the disease, is relived determines the patient's satisfaction and evaluation of physician competence.35 Illness both affects and is affected by all aspects of the sufferer's being, 21'36 and therein lies the failure of the paradigm. In the absence of demonstrable disease, despite the persistence of illness, the doctor may conclude that, "there is nothing wrong," "there is nothing more I can do." The psychosocial and spiritual variables that at the very least color and may produce illness are not understood8

Sin embargo, la enfermedad no es ni necesaria ni suficiente para explicar el illnessHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncEl modelo mdico y el distrs espiritual

As a prelude to examining how we might recognize and respond to spiritual distress, let us consider current attitudes concerning the physician's mandate and the goals of health care in general. Two papers are enlightening in this regard: Anthony Reading's classic "Illness and Disease"21 and H. Brownell Wheeler's landmark Shattuck Lecture, "Healing and Heroism."34 Reading has drawn attention to the importance of distinguishing between "illness" and "disease" if optimal health care is to be achieved. He points out that modern medical practice is based on a paradigm whose validity has generally passed unquestioned, that is, that "illness is the result of disease and is best dealt with by treating the underlying disease." Thus, "disease" (the various structural disorders of the individual's tissues and organs that give rise to the signs of ill health), the object of science and technology, has been accepted as the preeminent focus of medical care, and "illness" (the patient's experience of ill health) has been largely ignored or at most viewed as being of secondary importance, a simple by-product of disease. But disease is neither necessary nor sufficient to explain illness.21 For the patient, it is his illness that he complains of and that causes him to seek medical attention. It is illness, not disease, that is his concrete reality.And how the illness, not the disease, is relived determines the patient's satisfaction and evaluation of physician competence.35 Illness both affects and is affected by all aspects of the sufferer's being, 21'36 and therein lies the failure of the paradigm. In the absence of demonstrable disease, despite the persistence of illness, the doctor may conclude that, "there is nothing wrong," "there is nothing more I can do." The psychosocial and spiritual variables that at the very least color and may produce illness are not understood9

Psiquis humana: superficial y profunda

SUPERFICIAL: el aspecto consciente y la organizacin de la personalidad y el lenguaje de lo racional, analtico y pensamiento lineal son dominantes.

PROFUNDA: aspectos inconscientes. Este es el reino de la intuicin y la imaginacin, y Jung lo llama el s mismo, es decir, el centro interior de la persona, que algunos podran ver como un proceso continuo con lo trascendenteEl miedo dinmico y los orgenes de la espiritualidadHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

A simplified version of Carl Jung's map of the psyche may be helpful in reflecting on the nature of spiritual pain. In this model, the psyche is seen as having two different and distinct levels, the surface and the deep. The surface level refers to the conscious aspects of the psyche, where the ego, that is, the aware and organizing aspect of the personality, and the language of rational, analytical, and linear thinking are dominant. The deep level, on the other hand, refers to the unconscious aspects of the psyche. This is the realm of intuition and imagination, and it is here that what Jung calls the Self, that is, the deep, inner center of personhood, which some would see as being continuous with the transcendent, is located. The ego loves the surface level of psyche with an intensity equaled only by its terror of the deep. Why is this? Jung points toward an answer when he comments that the dread and resistance that human beings naturally experience when it comes to delving deeply into the unconscious is, at bottom, the fear of the journey to Hades.42 In other words, from the perspective of the ego, the deep aspects of psyche are as unknown and terrifying as the underworld of death itself.10

Desde la perspectiva del ego, los aspectos profundos de la psique son tan desconocidos y aterradores como el mundo subterrneo de la muerte mismaEl miedo dinmico y los orgenes de la espiritualidadHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

A simplified version of Carl Jung's map of the psyche may be helpful in reflecting on the nature of spiritual pain. In this model, the psyche is seen as having two different and distinct levels, the surface and the deep. The surface level refers to the conscious aspects of the psyche, where the ego, that is, the aware and organizing aspect of the personality, and the language of rational, analytical, and linear thinking are dominant. The deep level, on the other hand, refers to the unconscious aspects of the psyche. This is the realm of intuition and imagination, and it is here that what Jung calls the Self, that is, the deep, inner center of personhood, which some would see as being continuous with the transcendent, is located. The ego loves the surface level of psyche with an intensity equaled only by its terror of the deep. Why is this? Jung points toward an answer when he comments that the dread and resistance that human beings naturally experience when it comes to delving deeply into the unconscious is, at bottom, the fear of the journey to Hades.42 In other words, from the perspective of the ego, the deep aspects of psyche are as unknown and terrifying as the underworld of death itself.11

Conciencia que genera terror (Salomon et al.)

Comprensin de la gnesis del dolor espiritual

Ser concientes de nuestra propia mortalidad

Miedo profundo e inconciente de la muerte como aniquilacin absoluta

Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncTEORA DEL TERROR

Solomon et al. have built on the work of Becker to develop what they call terror-management theory,45'46 a construct that is pertinentto an understanding of the genesis of spiritual pain. Solomon et al. postulate that a defining characteristic of humanity is the capacity for mortalitysalience, that is, the ability to be aware of our own mortality. This awareness generates terror, which they describe not as an intense fear ofdeath per se but rather as a profound and usually unconscious dread of death as absolute annihilation. We cope, they suggest, with such terror bydeveloping what they term an "anxiety buffer. This is achieved by denying or repressing the terror at an individual unconscious level while simultaneously creating, maintaining, and participating in "culture" at a communal level. From this perspective, therefore, culture is seen as asymbolic construction that helps to minimize the anxiety associated with an awareness of death 12

Dolor espiritual puede aparecer somanticamente,emocionalmente, socialmente, religiosamente

El reto es reconocer para qu es el dolor espiritual

Diagnstico difcil de realizar

Sntomas: psomticos, sociales, psicolgicos, religiosos

Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncDolor espiritual

While spiritual pain can appear somatically, emotionally, religiously, or socially, at the root of such distress is a rupture, a disconnection, and a resulting alienation within individuals from that aspect of their deepest selves that gives meaning, hope, and purpose. The challenge is to make the diagnosis, to recognize spiritual pain for what it is. This recognition will, in turn, point toward appropriate ways of responding. While it would be foolish to suppose that it is easy to recognize spiritual pain, it is, nonetheless, essential to attempt to do this if we are to help someone who is suffering in this way. As in any other aspect of medicine, there is an implicit value in accurately naming the source of symptoms. This tends to rob the symptoms of some of the tyrannical power that thrives on anonymity, helps both carers and patients to agree to realistic goals for treatment, and, perhaps most important, points the healing interventions in the right direction. Spiritual pain is a difficult diagnosis to make. There are, however, certain characteristic features that may allow recognition of this form of human suffering.

14

Cosas en comn

Temor caracterstico de un paciente que trata desesperadamente de encontrar la salida deldolor espiritual

Dolo r espiritual durante tiempo prolongado simula una depresin atpica

No es caer en discusin si es diferente o es lo mismoHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncDolor espiritual y depresin

Spiritual pain and clinical depression can, at times, have much in common. The characteristic fear and gitated struggle of a patient trying desperately to find a way out of spiritual pain, perhaps with associated feelings of alienation, have many overlapping features with acute agitated depression. Spiritual pain that has been present over a prolonged period of time, that causes individuals to feel utterly hopeless as they progressively withdraw from life and from living, can look like an apathetic depression. In the context of this chapter, however, our primary concern is not to debate whether spiritual pain is depression by another name, nor is it to debate whether spiritual pain is biologically or existentially generated; rather, it is to examine the language we use as clinicians to describe such an experience because this indicates and affects how we view that experience, which in turn influences how we act in response to it. The difficulty with labeling such suffering in an individual as "only an episode of depression" and then only prescribing antidepressant medication by way of response is that this constitutes at best a superficial response tothe surface features of spiritual pain. Furthermore, it can prevent carers from seeing the full existential dimensions of the person's suffering and therefore ultimately have the effect of devaluing what such an individual is living.

15

Valorar la relacin teraputica cuidador y paciente

Camino en un territorio peligroso Camino hacia un fuguro desconocido

La simple presencia de una persona que se preocupa por la otra

Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

In responding to spiritual distress, it is essential to appreciate the healing potential of the relationship between carer and patient. For the dying patient, the inner descent to the deep psyche is as much a move into perilous territory as is a move toward the unknown future. The therapeutic relationship helps to create conditions that facilitate such moves toward unsafety. As Saunders puts it, "The real presence of another person is a place of security. We have to give all patients that feeling of security in which they can begin, when they are ready, to face unsafety."57 The simple presence of one who is concerned, one who is willing to be a companion and to remain steadfast when there are no easy answers, is itself aform of powerful communication that goes beyond words. One of the most valuable ways of forming a connection with a stranger is to acknowledge and understand his or her reality in all its bleakness without conveying a sense of helplessness, despair, or defeat (Ormont LR, Ormont J, personal communication).

16

Establecer contacto

Brecha de dos personas desconocidas

Escucha activa, puntos en comn y exploracin de diferencias

Aspectos no verbales de la comunicacin Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

Bridging the gap that exists between two strangers involves a process of active listening, discovering common ground, and exploring differences. The primary means of establishing contact with a person in spiritual pain is through active listening. This means deliberately and consciously "tuning in" to that patient's unique wavelength by attending to both the factual and the feeling content of what that person is communicating. The latter is crucially important. Feelings may connect to the depths of a person, and the experience of being heard at this profound level can result in a transformation of the terrifying isolation that is a hallmark of such spiritual distress into a sense of aloneness that is bearable and mysteriously permeated with hope. While the factual content of what a person is saying is relatively easily determined from the individual's verbal communication, the feeling content is less easily perceived. Feelings are "heard" through the nonverbal aspects of that person's communicationby how he says what he says, by his tone of voice, his posture, and how he is in the silences between his words.17

Respetar al otro

Adoptar una postura de reconocimiento y honra del carcter de la persona

Ser humano nico, cuya esencia se caracteriza por la dignidad

Muchos incidentes pueden pasar desapercibidos en el da de un pacienteHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

This means adopting a stance that recognizes and honors the distinctiveness of the person being cared for. To acknowledge the uniqueness of the sufferer is to validate his or her personhood. This is accomplished through gestures, actions, questions, and assertions that demonstrate recognition that you are dealing with a unique human being whose essence is characterized by dignity. It is compromised by waiting lines, case numbers, institutional norms, lapses of privacy, unexplained delays in bedside care, investigations, or procedures, and a thousand other potentially invasive incidents that may pass unnoticed in a patient's day.

18

En paralelo con la atencin a los sntomas fsicos, todos los dems aspectos reversibles de sufrimiento del paciente, ya sea en el mbito de la comunicacin, las relaciones, las cuestiones religiosas, actividades de la vida diaria, o los asuntos financieros, deben ser identificados y tratados con la amplia variedad de habilidades de un equipo multidisciplinarioHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncControlar sntomasefectivamente

The control of pain and other symptoms is the foundation on which excellence in whole-person care is fashioned. Psychosocial interventions and the sorts of depth skills described earlier are much less likely to be effective if inadequate attention is given to the diagnosis and management of the patient's multiple symptoms. Should carers of whatever disciplinenurse, physician, cleaner, priestidentify unresolved distress such as pain, nausea, dyspnea, or constipation, this should be brought to the attention of colleagues on the team in order to ensure optimal management of the physical contributors to these symptoms while additional attention is paid to potential psychosocial and spiritual factors that may be involved. Attention should also be given to whatever meaning such symptoms hold for the patient. In parallel with this attention to physical symptoms, all other reversible aspects of the patient's suffering,whether in the area of communications, relationships, specifically religious issues, activities of daily living, or financial and other practical affairs, must be identified and treated using the broad and variedskills of the multidisciplinary team.

19

Hay un verdadero potencial teraputico en la ampliacin y profundizacin de la historia clnica del paciente con dolor espiritual

Tener una idea de la topografa de la individualidad del paciente

Todas las personas que tienen personalidad y carcter, pasado, una familia, un entorno cultural, roles y relaciones, una identidad poltica , comportamientos y acciones, una visin del mundo interior, un cuerpo, una vida secreta, un futuro percibido como una dimensin trascendente.Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncObtener una biografaClnica

There is a real therapeutic potential in broadening and deepening the case history of the patient in spiritual pain into a narrative tale that provides a "who" as well as a "what" and knowledge of a real person rather than simply a disease.61 An understanding of the full "who" of the person being cared for depends on developing insight into the topography of the patient's individuality, remembering that all persons have personality and character, past, a family, a cultural background, roles and relationships, a political identity, behaviors and actions, an inner world view, a body, a secret life, a perceived future and a transcendent dimension. Each of these domains shapes their identity and their experiences of illness, and each is affected by the illness20

Slo mediante la investigacin apacible en un ambiente de confianza se puede expresar el verdadero significado de la enfermedad para el paciente, enfrentarla y tratarlaHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncSIGNIFICADO DE LA ENFERMEDADPARA EL PACIENTE

This follows from the preceding step and involves gaining insight into the significance of the illnessfor the patient. This may not be immediately apparent. For an elderly, isolated immigrant, her illnesswas a catastrophic threat to her ability to care for and protect the secret existence of her 42-year old mentally handicapped daughter. A young woman thought her breast cancer meant she would die with the uncontrolled pain she had observed when her grandmother had the same disease. A lonely widower experienced his cancer as a ticket to liberation from grief; an aging bachelor saw his as God's punishment for a life misspent. Only by gentle inquiry in an atmosphere of trust can the real meaning of illness for the patient be expressed, confronted, and dealt with.

21

Tratar de comprender las consecuencias percibidas de esta crisis de la vida para la familia y amigos del pacienteEjemplos ?Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncSIGNIFICADO DE LA ENFERMEDADPARA LA FAMILIA

This involves trying to understand the perceived implications of this life crisis for the patient's family and friends. For one young man, his friend's illness meant the inevitable public disclosure of their homosexual relationship. For four children, the loss of their alcoholic, often absent father meant anger, relief, and guilt; it also meant an unpaid mortgage, the need to sell their home, and a move that would leave all friends and familiar associations behind. The dimensions of the loss facing another grieving family could not be fully appreciated without knowing that the middle son of three, age 9, had died. The full scope of their distress was clarified only on seeing the family photographs. In each snapshot, the boy who haddied was standing at the center of the family group. "Now I understand," the caregiver exclaimed. "You didn't lose the middle son of three; you lost the glue of the family, the center of gravity, the lynchpin." "Yes! Yes!" blurted out the father. "We lost the family's soul!" Further gentle inquiry led to a deepening understanding of this ruptured family system and more meaningful insight into the family's distress. When this was communicated to the family members, they recognized that they were with a carer who understood something of the enormity of their loss. This was a true connection over and above theemotional release the family experienced.

22

Viejos malentendidos, resentimientos, celos y prejuicios a menudo salen a relucir

Cuidador puede sealar oportunidades para reconciliacin

Momento de transformacin

Explorar la necesidad de reconciliacin del pacienteHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

The stress of terminal illness may accentuate inherent difficulties in family relationships. Oldmisunderstandings, resentments, jealousies, and prejudices are often inflamed. The caregiver is in a privileged position as an objective observer who may be able to point out opportunities for reconciliation at this time of changing reality in the family system. Like acceptance of forgiveness, reconciliation always starts with self, then involves others and, for many, God, however that ultimate reality may be perceived.

24

Camino a un lugar de consuelo y paz interior

No todos lo consiguen

Muchos quedan atrapados en una prisin de dolor espiritual

Separar dimensin superficial y profunda , para hallar el poder curativo de la profundidad: rituales religiosos, etcParticipar activamente cuando el paciente permanece bloqueadoHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

The various aspects of response already discussed, in particular the control of physical suffering and the establishment of a relationship of trust between patient and carer, enable the majority of individuals in spiritual pain to descend to a place of inner consolation and peace. For others, however, this is not enough, and such individuals remain trapped in their surface prison of spiritual pain. It is in instances such as this that one of the depth skills mentioned earlier may be of particular relevance. It is essential that the individual who offers the patient the opportunity of working in this way be fully trained in that particular depth skill and adequately supervised and, ideally, already be part of the caring team andknown to the patient. What is common to all such approaches is their ability to tackle the problem at the heart of spiritual pain, that is, the disconnection and subsequent alienation from depth, by safely bringing the patient from the surface mind to the deep mind and by encouraging the patient to open and experience there the healing power of depth. The appropriate use of religious ritual, as discussed, might also be seenas a depth skill from this perspective. The following is an example of the use of one such technique, imagework, in a patient with spiritual pain.

25

Tratamiento del sufrimiento en el paciente con Ca avanzado

Para el paciente con cncer incurable avanzado, los objetivos de la atencin son el alivio del sufrimiento, la optimizacin de la calidad de vida hasta que se produce la muerte, y la provisin de consuelo en el proceso de la muerteIntroduccinHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncChemy et al. Han definido sufrimiento como un experiencia aversiva emocional que se caracteriza por la percepcin de la angustia personal que se genera por factores adversos que atentan contra la calidad de vida

For the patient with advanced incurable cancer, the goals of care are the alleviation of suffering, the optimization of quality of life until death ensues, and the provision of comfort in death.1 The alleviation of suffering is universally acknowledged as a cardinal goal of medical care.1"6 Persistent suffering that is inadequately relieved (or the anticipation of this situation) undermines the value of life for the sufferer.The ability to formulate a clinical response to the problem of suffering in the cancer patient requires a clinically relevant understanding of the nature of the problem.7"11 In an attempt to develop a clinically relevant definition, Chemy et al. have defined suffering as an aversive emotional experience characterized by the perception of personal distress that is generated by adverse factors that undermine quality of life.11 According to this model, there are 3 defining characteristics of suffering: (1) perceptual capacity (sentience) must be present, 12'13 (b) the factors undermining quality of life must be appraised as distressing, and (c) the experience must be aversive. Suffering is not a diagnosis; rather, it is a phenomenon of conscious human existence.12 The intensity of the experience is a variable that is determined by the number and severity of the factors diminishing quality of life, the processes of appraisal, and perception. Each of these factors is amenable to therapeutic interventions. 27

Caractersticas

Capacidad de percepcinFactores que afectan la vida deben producir angustiaLa experiencia es un fenmeno de la conciencia humana

Intensidad de la experiencia

IntroduccinHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

For the patient with advanced incurable cancer, the goals of care are the alleviation of suffering, the optimization of quality of life until death ensues, and the provision of comfort in death.1 The alleviation of suffering is universally acknowledged as a cardinal goal of medical care.1"6 Persistent suffering that is inadequately relieved (or the anticipation of this situation) undermines the value of life for the sufferer.The ability to formulate a clinical response to the problem of suffering in the cancer patient requires a clinically relevant understanding of the nature of the problem.7"11 In an attempt to develop a clinically relevant definition, Chemy et al. have defined suffering as an aversive emotional experience characterized by the perception of personal distress that is generated by adverse factors that undermine quality of life.11 According to this model, there are 3 defining characteristics of suffering: (1) perceptual capacity (sentience) must be present, 12'13 (b) the factors undermining quality of life must be appraised as distressing, and (c) the experience must be aversive. Suffering is not a diagnosis; rather, it is a phenomenon of conscious human existence.12 The intensity of the experience is a variable that is determined by the number and severity of the factors diminishing quality of life, the processes of appraisal, and perception. Each of these factors is amenable to therapeutic interventions. 28

Paradigma Hipocrtico

Medicina: vocacin de la compasin

Se opone a la eliminacin de la vctima

Medicina hipocrtica y alivio del sufrimientoHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

Hippocratic medicine has traditionally defined the purview of medical practice in normative situations.According to the Hippocratic paradigm, medicine is seen as a vocation of compassion in which the quality and quantity of human life are of critical concern. The imperative to alleviate suffering precludes the elimination of the sufferer, and the administration of "a deadly drug to any patient" falls beyond the normative practice ofmedicine. The Hippocratic Charter may be summarized as follows:1. To abhor suffering and preventable premature Death2. To strive to prevent or to cure illness that generates suffering and foreshortens survival3. When cure is not possible, to find the optimal balance between relief of suffering and prolongation of survival4. The relief of suffering should be achieved by means other than the termination of the life of the sufferer

29

1. Para aborrecer el sufrimiento y la muerte prematura prevenible2. Para tratar de prevenir o curar una enfermedad que genera sufrimiento y acorta la supervivencia3. Cuando la curacin no es posible, para encontrar el equilibrio ptimo entre el alivio del sufrimiento y la prolongacin de la supervivencia4. El alivio del sufrimiento debe lograrse mediante distintos medios de terminacin de la vida del individuoMedicina hipocrtica y alivio del sufrimientoHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

Hippocratic medicine has traditionally defined the purview of medical practice in normative situations.According to the Hippocratic paradigm, medicine is seen as a vocation of compassion in which the quality and quantity of human life are of critical concern. The imperative to alleviate suffering precludes the elimination of the sufferer, and the administration of "a deadly drug to any patient" falls beyond the normative practice ofmedicine. The Hippocratic Charter may be summarized as follows:1. To abhor suffering and preventable premature Death2. To strive to prevent or to cure illness that generates suffering and foreshortens survival3. When cure is not possible, to find the optimal balance between relief of suffering and prolongation of survival4. The relief of suffering should be achieved by means other than the termination of the life of the sufferer

30

Sufrimiento incontrolado de un paciente moribundo es una emergencia mdica

Cuando se demanda una ayuda a quitar la vida hay una falencia en el alivio

Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncConfrontando el sufrimiento como un problema clnico

Inadequately relieved suffering can present as uncontrolled physical symptoms, depression or anxiety,severe existential distress, or family member and health-care provider fatigue, or it can manifest itself in the request for euthanasia or physician- assisted suicide.51'71 Most often the contributing factors coexist in combinations; for example, the depressed patient with uncontrolled pain may be attended to by frustrated, distressed relatives and an exhausted, exasperated physician. Uncontrolled suffering in a dying patient is amedical emergency.1 When patients, their families, or other health-care providers request that the patient be killed or helped to kill himself, this is usually in response to actual suffering that is inadequately relieved or to anticipated unrelieved suffering.48'51'72"79 In the Hippocratic tradition, an appropriate response is to say, "I don't kill patients, but neither will I just stand by and watch inadequately treated suffering."31

Tradicin Hipocrtica:Yo no mat al paciente, pero tampoco voy a quedarme de brazos cruzados y ver inadecuadamente tratado tanto sufrimiento ".

Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, IncConfrontando el sufrimiento como un problema clnico

Inadequately relieved suffering can present as uncontrolled physical symptoms, depression or anxiety,severe existential distress, or family member and health-care provider fatigue, or it can manifest itself in the request for euthanasia or physician- assisted suicide.51'71 Most often the contributing factors coexist in combinations; for example, the depressed patient with uncontrolled pain may be attended to by frustrated, distressed relatives and an exhausted, exasperated physician. Uncontrolled suffering in a dying patient is amedical emergency.1 When patients, their families, or other health-care providers request that the patient be killed or helped to kill himself, this is usually in response to actual suffering that is inadequately relieved or to anticipated unrelieved suffering.48'51'72"79 In the Hippocratic tradition, an appropriate response is to say, "I don't kill patients, but neither will I just stand by and watch inadequately treated suffering."32

The Relationship Among the Distress of the Patient, Family and Health-care Providers

Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

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Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

Aclarando los objetivos del cuidado

Los objetivos de la atencin a menudo son complejos, pero en general se pueden agrupar en tres grandes categoras: la prolongacin de la supervivencia, la optimizacin de la comodidad, y la optimizacin de funcinHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

A common source of distress for patient, family, and professional carers occurs when there is a lack of coordination among the involved parties in the desired goals of patient care. The goals of care are often complex but can generally be grouped into three broad categories: prolonging survival, optimizing comfort, and optimizing function.101 The relative priority of these goals provides an essential context for therapeutic decision making. The prioritization of these goals is a dynamic phenomenon that changes with the evolution of the disease; whereas the optimization of comfort, function, and survival may shareequal priority during the phase of ambulatory palliation, the provision of comfort usually assumes overriding priority as death approaches.101 When patients prioritize optimal comfort and function equally, the therapeutic intent is to achieve an adequate degree of relief without compromising cognitive and physical function. When comfort is the overriding goal of care, the overriding intent is to achieve relief. In the latter circumstance, there is a willingness to continue therapies that may impair function or evenforeshorten life expectancy

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Ansiedad y depresin severas

Depresin: factor en el 50% de todos los suicidios Es probablemente el factor ms importante factor en muchas solicitudes de eutanasia o suicidio asistidoIdea erronea de depresion y cncerAnsiedad: trastorno primario o factores circunstancialesDisminucin gradual , adaptacin

Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

Depression represents a major source of patient morbidity. It is a factor in 50% of all suicides andis probably a factor in many requests for euthanasia or assisted suicide.69'103'104 Undertreatment derives largely from problems of recognition and assessment and from the misconception that depression is a normal response to cancer.104 Depressive symptoms may result from existential distress (discussed later), the empathic perception of family distress, psychiatric problems of adjustment disorder or major depression, or organic problems such as persistently unrelieved symptoms. The normal grief or sadness engendered by a diagnosis of cancer is usually associated with fluctuating feelings of mild or moderate depression, which gradually diminish in intensity as adaptive processes develop.104Anxiety may be produced by a primary psychological disorder, by situational factors related to the disease, its treatment, and potential outcomes and to related existential concerns, or by organic processes related to the disease or its treatment.23 Anxiety generally presents with either somatic or cognitive manifestations. Common themes in the anxieties of terminally ill patients include feelings of being overcome by threatening forces, preoccupation with the uncertainties of treatment outcomes and durationof survival, fears relating to the process of deteriorating health with loss of dignity and control, and fears about the mode of death (particularly with regard to pain and suffocation). In the face of uncertainty, it is normal to experience fluctuating feelings of mild or moderate anxiety, which gradually diminish in intensity as adaptive coping develops

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Distrss existencial

Desesperanza, inutilidad, falta de sentido, decepcin, remordimiento, ansiedad ante la muerte, y alteracin de la identidad personal.Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

Las preocupaciones sobre el pasado pueden provocar decepcin en relacin con aspiraciones incumplidas, depreciacin del valor de logros anteriores, o culpas sin resolver

Common existential issues for patients with advanced cancer include hopelessness, futility,meaninglessness, disappointment, remorse, death anxiety, and disruption of personal identity. Existential distresses may also be related to past, present, or future concerns. Concerns regarding the past can trigger disappointment related to unfulfilled aspirations, a deprecation of the value of previous achievements, orremorse from unresolved guilt. Present concerns may revolve around the sense of who one is as a person, which can be disrupted by changes in body image; in somatic, intellectual, social and professional function; and in perceived attractiveness as a person and as a sexual partner. And, if future life is perceived to offer, at best, comfort in the setting of fading potency or, at worst, ongoing physical and emotional distress as days pass slowly until death, anticipation of the future may be associated with feelings of hopelessness, futility, or meaninglessness such that the patient sees no value in continuing to live. Death anxiety is common among cancer patients; surveys have shown that 50% to 80% of terminally ill patients have concerns or troubling thoughts about death and that only a minority achieve an untroubled acceptance of death. Although these existential issues are sometimes referred to as "spiritual," they appear to be universal and independent of religion and religious practice.Therapeutic approaches have been developed to address concerns about current personal integrity, retrospective disappointment and remorse, death anxiety, and issues of hopelessness, futility, and meaninglessness.

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Distrss existencial, fsico y psicolgico refractario

El trmino "refractario" se puede aplicar cuando un sntoma no puede ser adecuadamente controlado a pesar de los esfuerzos agresivos para controlarloHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

Sedacin y analgesia

For patients with advanced cancer, physical and psychological symptoms cannot be eliminated butare usually relieved enough to temper the suffering of the patient and family. The term "refractory" can be applied when a symptom cannot be adequately controlled despite aggressive efforts to identify a tolerable therapy that does not compromise consciousness.62 In deciding that a symptom is refractory, the clinician must perceive that further invasive and noninvasive interventions are incapable of providing adequate relief, associated with excessive and intolerable acute or chronic morbidity, or unlikely to provide relief within a tolerable time frame.62 For patients with advanced cancer, the designation of a symptom as refractory has profound implications, suggesting that suffering will not be relieved with routine measures. Controlled sedation is routinely used to manage the severe pain and anxiety associated with noxious procedures that would otherwise be intolerable. Obviously, the loss of interactional function associated with sedation precludes its application in the ongoing management of routine patient care to relieve chronic physical, psychological, or existential distress, since the therapeutic goal is to achieve adequate relief with preserved function. At the end of life, however, the goals of care may change such that the relief of suffering predominates over all other considerations. In this situation, the designation of a symptom as "refractory" justifies the use of induced sedation as an option of laser report to provide relief with certainty and speed.

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Dimensions of Patient Distress, Management Approaches, and Potential Therapeutic ResourcesHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

Independent predictors repeatedly associated with higher mortality rates

Severity of the illness (SAPS II and APACHE)Non-pulmonary organ dysfunctionComorbid diseases SepsisLiver dysfunction/cirrhosisAdvanced age

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Dimensions of Patient Distress, Management Approaches, and Potential Therapeutic Resources

Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

Independent predictors repeatedly associated with higher mortality rates

Severity of the illness (SAPS II and APACHE)Non-pulmonary organ dysfunctionComorbid diseases SepsisLiver dysfunction/cirrhosisAdvanced age

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Principio del doble efecto "

Distingue entre la imperiosa intencin teraputica primaria (para aliviar el sufrimiento) y las consecuencias adversas inevitables (la disminucin probable de la funcin interactiva y la posibilidad de acelerar la muerte)

TICAHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

The use of sedating therapies recognizes the right of patients with advanced cancer to adequate relief of unendurable symptoms and the right of all patients to choose among appropriate therapeutic options.1'65'66 The ethical validity of this approach derives from the "principle of double effect," which distinguishes between the compelling primary therapeutic intent (to relieve suffering) and unavoidable untoward consequences (the likely diminution of interactional function and the potential for accelerating death).49 This principle is predicated on the axioms that intent is a critical ethical concern and that the distinction between foreseeing and intending an unavoidable maleficent outcome is ethically significant. The criticism, expressed by Quill,151 that clinical intentions may sometimes be more complex and ambiguous than those presented in this argument does not diminish the observation that the invocation of this principle allows the patient, family, and treating clinician to maintain an ethical equilibrium in this difficult situation. In the absence of this ethical equilibrium, the moral reservations of clinicians or family members may result in either the undertreatment of catastrophic symptoms or subsequent guilt and its morbid psychological sequelae

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Sedacion

Sedacin inadecuada o el desarrollo de efectos secundarios neuroexcitadores, tales como mioclonas o delirium hiperactivo a menudo requieren la adicin de un segundo agente terapeutico

Benzodiazepina, lorazepam, midazolam, flunitrazepam Delirium: haloperidol, clorpromazina

ADMINISTRACINHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

When sedation is desired by the patient who is already receiving an opioid for pain or dyspnea, an attempt is usually made to first escalate the opioid dose. Although some patients benefit from this intervention, inadequate sedation or the development of neuroexcitatory side effects, such as myoclonusor agitated delirium, often necessitate the addition of a second agent.154'155 The addition of a benzodiazepine is usually effective in this situation. The short-half-life drugs, such as lorazepam,23 midazolam,156"161 and flunitrazepam,162 are easy to titrate and are generally preferred. When rapid effect is required, the selected drug should be administered by a parenteral route, preferably intravenous (IV) or subcutaneous (SC). Patients suffering from an agitated delirium who are inadequately sedated by a neuroleptic agent such as haloperidol, metho-trimeprazine, or chlorpromazine can also benefit from addition of a benzodiazepine.

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Pasar juntos lo mejor posible los ltimos das

Reconocer el fin de la vida

Angustia emocional, pobre red domiciliaria, fatiga familiar, expectativas poco realistas,

La familia profundamente cansadaHandbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

The development of advanced cancer in a family member affects the entire family.165"170 Thechallenges confronting the familythe need to acknowledge the end of life as they have known it and to define a new way of constructively living out their final days together as best possible engender great stresses.168 Among the factors contributing to the ensuing distress are empathic suffering with the patient, grief and bereavement, role changes, and the physical, financial, and psychological sequelae of the burdens of care.165'168'171"174 The needs of the families of patients with advanced cancer have been surveyed by several researchers.165'166'172'173'175 They are summarized in Table 26.3. Severe family fatigue is commonly observed in four situations: (1) persistently inadequate relief of patient suffering,27'28'176 (2) inadequate resources to cope effectively with home care without severely compromising the current or future welfare of the family members,171'177'178 (3) family members' unrealistic expectations of themselvesor of professional health-care supports, and (4) emotional distress that persists even in the face of adequate relief of patient suffering.168'179 The problem of family fatigue may indicate problems of undiagnosed patient distress, or a foundering home situation that is further intensifying the distress of the family and the patient. Assessment may identify specific problems of patient suffering, logistic problems related to home care that are amenable to simple intervention (i.e., a catheter for a newly incontinent patient), or exhausted family carers with inadequate assistance or respite. Planned multidisciplinary interventions can assist with the logistic problems of home care, improving the adequacy of supports,providing for family respite, providing contingency planning for anticipated emergent situations (such as bleeding, uncontrolled pain, or dyspnea), and planning for the time that death occurs.27'55'102'180 Attentive follow-up to monitor the outcome of interventions facilitates the early detection of new problems and reinforces the perception of care and support. This, in turn, enhances patient and family security and facilitates a more positive appraisal of coping.

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Taxonomy of Factors Contributing to Distress

Handbook of psychiatry in palliative medicine. Edited by Harvey M. Chochinov, William Breitbart. Copyright 2000 by Oxford University Press, Inc

Dimensions of Family Member Distress, Management Approaches, and Potential Therapeutic resources

Gracias!

La religin de todas las personas debera ser la de creer en s mismas

Jiddu Krishnamurt

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