When my mother died last year, it was after six months of pure torture. She had always been healthy before, then she developed sudden pain which quickly led to the diagnosis of end-stage cancer. Though my mother had previously been opposed to advanced medical treatment (she would probably still be alive and well now if she had gone to regular checkups), she agreed to chemo and radiation therapy. During the next months, her body gradually but radically declined. Before severe morphine psychosis set in, she re-iterated her instructions that no life-extending measures were to be taken. Her plan was to die at home, surrounded by her things, and the people who loved her, if possible in her green garden.

I quit everything to care for her during those last months. Our routine was to have short hospital stints to apply quick fixes for whatever was wrong, and then be sent back home where a nurse and I were taking care of her. One day she could not move anymore at all, and by sheer coincidence she was lucid at the time despite her heavy morphine dosage. We decided to arrange for another diagnostic stint at the hospital. There, she deteriorated very quickly, within hours. Sadly, she was completely delusional on that last evening so we could not say good bye to her. I had not even managed to get her some basic things like her digital picture frame or her favorite stuffed animal, because we had all thought she would be able to go home again. She was not. During that night she slipped into a deep coma, which was quite a merciful coincidence all things considered.

Because she had made sure that she wouldn't receive any life extending treatment, the hospital staff interpreted this to mean that no treatment at all would be given. I was at her bedside when she almost suffocated on her own vomit. If I hadn't been there to turn her around and make sure the fluid was drained as best as I could without any equipment or other assistance, she would have died quite horribly right there under the eyes of nurses and doctors. Next the day, her swallowing reflex had seized to function. It was very painful to watch, yet staff did nothing to drain the fluid despite my repeated pleas to ease her suffering. Finally, she died (relatively peacefully) that evening.

I can't help but feel after this, and despite having completed medical school and despite having some experience with terminal illness, that everybody failed in this. My mother should not have agreed to this huge amount of palliative care that put her through hell, for longer than was necessary and forced her to cope with the horrible staff at our local palliative center. I shouldn't have agreed to and then arranged for that last hospital visit. The hospital staff should not have denied her basic comforts and care on the grounds of a DNR. The entire thing was a huge screw-up.

Somewhere between trying everything we can and knowing when to let go, between planning and sudden decision-making, between being professional and being compassionate, there is a balance that we have not found yet.