In recognition of Grief Awareness Week, it seems fitting to share an extract from When The Time Comes: Stories from the end of life. A recent experience with a relative who had suffered a catastrophic stroke put this extract very much in mind – the messages we received from the hospital were so conflicting we did not know whether to prepare for a peaceful death or to put all our energies into sorting out a care package and expecting to bring the patient home. Time that could have been spent saying good-bye and grieving was spent needlessly on high-stress chasing after unavailable services. As this piece describes, health professionals are familiar with the ‘dying trajectory’ and the ‘inevitable progression’ of failing health, but those outside the system are generally not and are often shocked by knowledge that clinicians have been taking for granted, as Henry, husband of dying Helen, is in this real-life story: 

From Chapter 6: Not coming home 

I do not believe Henry had ever been told that the repeat hospitalisations where his wife gradually deteriorated after each discharge were a sign that she was on the dying trajectory. Every shift I had that week I made sure I was allocated to Helen’s room. I knew her dying journey had started but wanted her so badly to get better, not only for her sake but for Henry’s too as he often said that if Helen was not home with him on the farm he would not know what to do with himself. I guess this would have been a perfect time to explain to him that she had passed the point of no return, but it was not my role to do that, nor that of the medical student helping us. And if the specialists whose role it was had already mentioned it to Henry, the news did not appear to have sunk in. 

Helen’s condition began to deteriorate quickly over the following days. Henry sat patiently in the room for long hours stroking her head and her hand, looking up in anticipation when any clinician walked past as if waiting for good news each day, wishing for confirmation that Helen would soon be up on her feet and coming home. I overheard him speaking to her and telling other staff that when she was able to come home he would organise help for the two of them. I felt he possibly believed that if he accepted help from their town’s aged-care services, Helen could come back with him sooner. This was not the case, however, as she was too unwell to leave the ward. 

This admission was unlike any previous one. Helen probably sensed this because after a few days she had undergone assessment by the intensive care team, plus chest X-rays, and IV fluids and oxygen were running at all times. All of these were new to her. Henry, however, continued querying us about why Helen was not getting better, although staff had explained repeatedly that she had a serious infection which was not easy to control given the chronic illness affecting her lungs. Looking back I do not know if Henry truly understood Helen’s condition, but nobody seemed to go a step further in detailing the potential outcome in light of the lack of response to treatment. It was not a conspiracy of silence, just the clinical inertia of giving the treatments doctors are trained to deliver, or perhaps fear of taking Henry’s last bit of hope away. In either case, Henry was none the wiser. 

One evening shift I was with Helen and her condition was deteriorating further. She was now not talking in sentences and was becoming very drowsy, her eyes closed most of the time I was with her. Higher oxygen was given, medications were changed and drips of all sorts were again connected. She was too weak to eat and Henry was becoming very distressed at this. He could not understand why she was not hungry. Despite reassurance that she was indeed not feeling hungry, I had found him force-feeding her once, begging her to accept food while shedding silent tears. Of course I understood that Henry was doing this out of love and wasn’t able to accept at this point that Helen’s body was shutting down. An emergency medical call was placed during the night when Henry had stayed. When the junior doctor arrived on the ward it was evident to nursing staff and the doctor that Helen was actively dying. Henry became very distressed and agitated to hear there was nothing more that could be done from a medical point of view. However, after discussion that night, it was decided to continue with medications until Helen’s specialist could review and organise a meeting with Henry in the morning. Neither the nurses nor the medical student were in a position to have definitive words with Henry, as informing the patient’s husband was – and is – the specialist’s role. 

I came back to work after two days and Helen was still on my ward. Henry told me that he had had a meeting with her doctor who had explained her condition and it was decided that she would be made as comfortable as possible while the condition ran its course. Henry was teary and withdrawn throughout my whole shift. He was becoming increasingly frustrated at the doctors and could not understand why Helen was not recovering from this lung infection. ‘It was just two weeks ago, after her other hospitalisation, we were sitting at the farm having cups of tea and laughing as we remembered stories of the kids. Why was this cough any different?’ he kept asking. ‘Helen never told me that this cough was any more serious than the last. She has been sick many times this last year for the same reason and she has always come home.’ He was also very distressed that Helen might be in pain as her breathing had changed, but she was unable to talk so, ‘How would anyone know?’ he would often say. 

He did not know how she could be dying. This dying trajectory, with repeat hospital admissions, had been long and, while commonly witnessed by clinicians, was unrecognised by the husband. I am unsure if the clinicians managing her in previous admissions had mentioned to him the inevitable progression, but I was painfully aware of the looming prognosis that he could not yet grasp, two days after being told of the imminent outcome. Henry had only a very short time to come to grips with Helen’s condition and the devastating news that all active treatments would be suspended. The doctors had looked him in the eye and reassured him that she would not suffer, they had been honest with him about the irreversibility of it all and made sure he did not have false hope for a miracle; they gave him time to absorb the shocking reality and offered to answer any questions about the dying process, but Henry had no questions. He slowly swallowed his tears and accepted the fact that Helen was not coming home. Not this time. Not ever.