Comments of Chapter 7: Supportive and palliative care
How it is now
The following, instead, was the reality of the case.
Mr YKC had recurrent re-admissions to hospital of increasingly longer durations and with shorter intervals between the admissions. Without a clear primary physician to call upon, this often brought him into head-on collision with an unwieldy healthcare system, which often had doctors unfamiliar with his condition, unaware of the goals of his care and unable to provide the support and care he needed. During one such admission, as he lay gasping, desperate for attention, his family was told that he had a terminal condition and to accept his impending death. The family lodged a complaint:I knew he was going to die one day, but not in such a manner.
The hospital-based palliative care team was called upon and adjustments were made to his medication, which included bronchodilators, the addition of diuretics for heart failure and antibiotics for chest infection, the use of steroids, and low dose opioids. Advance care planning reached a decision against resuscitation in the event of cardiopulmonary collapse and the preference for care and death at home. Despite the initial pronouncement of doom, his symptoms improved enough for him to be discharged home.
Before the week was up, he was back in hospital again. His complaints were similar breathlessness. The home oxygen concentrator and nebulizer had not provided sufficient relief. He had not mobilized the home hospice team that he was referred to upon discharge, as he had not found them responsive or familiar enough with his condition to call upon. In his opinion, the emergency ambulance service was by far more reliable. In any case, his family also preferred him to be admitted into the security of a hospital as he lived alone with a live-in domestic helper to assist him.
Proposals for admission to a hospice were not taken up by his family. They kept saying, «The hospice is not the place for my father». Finally, after six admissions in the last six months of his life, Mr YKC passed away in the familiarity of the hospital.
In most parts of the world, the patient would not have fared any better.
Existe una gran diferecia entre ambas situaciones, pero el énfasis de esa diferencia pienso que hay que hacerlo en la disponilidad y la forma de trabajar de los profesionales, que muestran un gran interés, pero que tienen diferencias en la existencia de un dispositivo que permita atención continuada y unos recursos que faciliten la conexión interniveles, más que el uso de la tecnología.
Si funcionan equipos interdisciplinarios de cuidados paliativos, con recursos humanos suficientes para facilitar la atención y la gestión, la tecnología es un avance que puede ayudar, pero la falta de esa tecnología no implica que la gestión da cada caso no sea eficiente. Personalmente, en situaciones tan sensibles, me da miedo que se intente justificar la falta e recursos humanos sustituyéndola por recursos técnicos. En la segunda situación yo diría que hay una mala actuación, no por la falta de ordenadores, sino por la falta de medios y coordinación (la atención integral en Cuidados Paliativos implica la presencia real de profesionales en los hospitales y centros de salud las 24 horas del día y una coordinación para la correcta utilización de recursos. Si eso falla, falla todo)