It seems that this health world of “order” and classification, where everything must be controlled and measured, is unthinkable not to do as well with people.
Hypertensive, diabetic, bronchitics… People with more history than his disease, who have been “classified as sick” with the opinion that has marked the Organization of the health system. But someone has wondered what meaning has had labeling a person, with all its diversity? Dementia, mentally ill,…terminally patient.
Dr. William Hurt (Jack MacKee in the film The Doctor) said: “Terminal of what…buses?” – berating a medical student to refer to a patient with palliative needs, as “the terminal pf the room…”.
The meaning that has for us the “terminally ill” concept, will be to convey him to the patient. We possibly think in a situation of no cure, and no treatment (“there is nothing to do”). Kübler-Ross said that this situation of professional frustration for not healing, leads us to move away from the patient. Therefore, there will be no more revisions in the consultations of the hospital, “visits to the specialist” are suspended after significant periods of review, and when the patient is feeling sicker, we give them discharge.
This seems difficult to understand; at the moment you feel that your doctor and your nurse “pull the towel”. The person left alone and still sick. A situation that should make us reflect and understand that it is important that there must be a continuous transmission of care, where there is a health care hole. The lack of information and coordination is going to harm the aftercare, and no one wants this.
Upon receipt of the request for assistance by the palliative care unit, there we go. The Unit of palliative, these large unknown. Who have told them that we are? Do know the patient and family what could we offer?. The perceptions that we have in the first visits are curious, expressions such as: “Please, do not say him that you are the palliative unit”, or “you are those that help to die”, or worse still, believe that we are that we are going to cure them, or those who will be at home every day and at all hours, etc. And this happens because healthcare professionals in addition to not communicate well with our patients, we are still failing in inter-branch coordination and information.
Speaking of palliative care is put to the person and his family in the center of care. Look beyond the disease, beyond the physical, understanding the situation as part of a being with all its physical, psycho-emotional, social and spiritual components. Cicely Saunder said “you care about being you, care until the last moment of your life and will do everything possible not only for helping you to better die, but to live until the end” and this is the philosophy of professionals who work every day in this care and alleviate, in an environment of uncertain prognosis, and initial suffering.
We can not cure advanced disease that has led to us, but we can work with the patient and his family to give maximum comfort and quality of life to the end, with a methodology of coordinated, multidisciplinary and interdisciplinary teamwork.
Palliative care should not be a luxury for some, but a right for all, and in this we must be all the professionals, ensuring coordination and quality care to the people who trust on us and get their care in our hands.
Manuela Monleón Just.
A “Palli-active” nurse.