Please, don’t forget ethical responsibilities

A caveat to the assumption that terminal or palliative sedation can be accepted as the norm by healthcare professionals is that patients and their relatives should be contacted and their wishes, where possible, properly obtained.1 This is not as straightforward as it sounds.

My own, previously well and robust, 92 year old father was admitted as a medical emergency with rectal haemorrhage. He had moved to live in a rest home three weeks earlier because of deteriorating health of uncertain cause, having spent all of his life living independently and in robust health (and fully lucid). On admission his haemoglobin was about 60 g/l, and initial resuscitation, blood transfusion, was successful. However, an urgent abdominal computed tomography scan showed a locally invading colonic carcinoma at the splenic flexure—with little chance he might survive surgery or, at least, long after it, and terminal sedation was decided on. Neither he (I later discovered) nor any of his close family was consulted before such a decision, and treatment was implemented immediately. My brother and I, his only first degree relatives, were both overseas and returned to the United Kingdom to be with him. My brother arrived the next day only to discover he was deeply unconscious. He lived three days in total until two hours after I arrived at the hospital. At this point he was warm, well perfused with a good cardiovascular output—so hardly haemorrhaging to death. After a 36 hour shuttle across the world having learnt he was sitting up, chatting, and vowing to recover (admittedly pre-diagnosis), to find him close to death was a little distressing. No drip, heavy sedation increasingly infused. Protocol successful; patient died quietly with his family. No goodbyes.

I was quite upset to learn that my father had no knowledge of his fate and I therefore investigated his care in more detail. I was then able to confirm that he had never consented to terminal sedation, and, although he knew his condition was not curable (not documented), he was certainly not aware that he would shortly die as was evidence by the statements he made to friends. And as his sons were flying to his side surely he would have wanted to see and talk to us before he died? Isn’t that obvious? Obviously not. Of course, once the facts were established, I received a profound and honest apology from the hospital, but I only received this after they had initially incorrectly made a statement in writing that he had received terminal sedation because he was “distressed” and “in pain.” Not only was this refuted by visitors but the notes made no reference to pain or distress, whatsoever. By all accounts he was actually feeling quite well. So was this terminal euthanasia in another guise—or was this worse?

Terminal sedation is not simply to expedite demise in order to free up costly specialist facilities. Far better to discharge such patients to hospice care where caring for the terminally ill is done with greater expertise and sensitivity. I only discovered these facts because I am a doctor and had the “brass neck” to ask. I am quite concerned what could well be going on out there in the name of caring and terminal sedation.