Internação domiciliar do paciente terminal: o olhar do cuidador familiar

Abstract

This study was aimed at getting to know the relationships built among patients, family caregivers and the health care team, during home care,from the perspective of the family caregiver It is a qualitative study with 11 family caregivers of terminal patients, registered on a home care service of a university hospital in the South of Brazil. Data collection was carried out through narrative interviews that were recorded transcribed and analyzed through content analysis. Three categories were built from data analysis: relationships among the family caregiver, the patient and the health care team; awareness of the patient's terminal condition. the caregiver's perspective; and situation in which patients are unaware of their terminal condition. They approach how the home care relationships are established among the caregivers, such as health care professionals and family caregivers, and the people who are taken care of such as the patients, highlighting the importance of communication in such care related context.

Oncological homecare: family and caregiver perception of palliative care

“…"The thin line between the patient's life and that of the caregiver disappears, as the latter starts to experience the life of their sick family member intensely so that nothing is missing". 18 This occurs because one has to assume the responsibilities of care alone, as the presence of other members of the family is sporadic and fragmented. This caregiver loses energy, feels tired and emotionally exhausted.…”

Manifestações e necessidades referentes ao processo de morte e morrer: perspectiva da pessoa com câncer Demonstrations and necessities on the death and dying process: perspective of the person with cancer

“…Thus, the concern of this professional is to facilitate communication among all those involved in this process, since it is favorable for the quality of death of a terminal patient to understand their own feelings about dying, in addition to approaching them with relationships with which he wishes to approach. 3 The professional, acting as mediator between the family and the patient, can guide them and help them in reorganizing their lives. In spite of his closeness to death, he can contribute to the remission of forgotten bonds by forgiving and asking for forgiveness, as well as allowing him to review people who are important to him, seeking to free them from negative feelings, contributing to liberation both for those who are going to leave as for those who will be.…”

“…2 Faced with this situation, it is thought that nothing else can be done for him, when there is much to do. 3 The health professional, with the prospect that something can be done by the patient in this situation, needs to keep in mind the knowledge produced by the two great personalities in the art of end-of-life care: Kübler-Ross on the process of death and Cicely Saunders with the vision of palliative care and the concept of total pain, which reaches the physical, psychic, social and spiritual dimensions of the human person. 4 Kubler-Ross has identified the stages through which people pass when they are at the end of life, as follows: Denial (the patient is suspicious of the exchange of exams or competence of the health team, which may be a temporary defense or, in some cases, Sustain yourself to the end); Anger (phase that feelings of anger, revolt, and resentment arise); Bargaining (at a time when the patient makes promises for a prolongation of life or a few days without pain or physical ills, such bargains being most often done with God, may be psychologically associated with a hidden guilt); Depression (referring to the difficulties of prolonged treatment and hospitalization, which increase sadness coupled with other feelings); Acceptance (related to the stage in which the patient begins to accept his situation and his destiny).…”

“…3,10 However, besides the author Kübler-Ross, 5 No further study was found that accompanies the patient in this process. Thus, the guiding question of the study was: What manifestations and needs regarding the process of death and dying of the person with cancer at the end of life?…”

Perception of Nursing Professionals About Patient Care of the Terminally Ill in the Hospital Environment

“…In view of this, when the staff members have the opportunity to maintain a dialogue with the patient and their families, they must to take advantage of this moment to learn what they understand about the disease and how much more they would like to know, since it is an ethical duty of the professional to maintain a true and sincere dialogue with the patient and his family. 15 So, in certain situations in which the concealment or distortion of the diagnosis of the terminally ill occurs, both on the part of the caregiver, as well as the health team, the staff are not necessarily contemplating the needs of these patients in the process. Often, the physical being is being cared, but the emotional and the spiritual components are not included in this process.…”