Participatory eHealth

I have now experienced not just the beginning of life, in giving birth to my two children, but also the end of life, in the recent death of my father. This is my own very personal reflection on these mysteries of life.

I first began to think about the connections between these events one afternoon a few weeks ago. My father was very ill, and we all new that the chances of him recovering from the complications of his cancer treatment enough so that we could consider alternative treatments were slim. I had attempted to go to work, I had an important meeting with eHälsomyndigheten (the Swedish eHealth Agency) and I really didn’t want to miss it. I however started crying as I got on the train, and when I had just one stop left I realized I wouldn’t be able to stop crying so I gave up and went home. Back in the safety of my empty house, I found myself literally howling with grief. As I sat there in my living room, I listened to the sounds I made. It was almost an out-of-body experience, I couldn’t connect the howling noices to myself and I wondered whether the neighbours could hear me and what they might think. I’ve only ever had one similar experience, and that was giving birth to my son. Without the epidural I had when giving birth to my daughter to take the edge off the pain, I heard noices coming out of me that sounded more like a panicking, dying animal than anything human – and as I sat in my living room, grieving my not yet dead father, I thought that perhaps it’s appropriate that the physical pain of bringing life into the world is matched by an equal emotional pain as a life comes to an end.

Nine days that seemed like an eternity later, I was standing in the kitchen of my childhood home and I finally got the courage to ask the homecare nurse “it can’t be long now, can it?”. It was a question full of despair and hope, it just had to be over soon. He had stopped eating and drinking, all medications except morphine and sedatives were removed and he no longer spoke or acknowledged our presence. Of course the nurse had no real answer to my question – “it depends on how strong his heart is”. But it reminded me again of giving birth to my son, having climbed up on the examination bed in the delivery room, somewhat shocked at how quickly things progressed compared my first childbirth, I asked – “but the baby is coming now, right?” and I could hear an edge of panic in my voice. And the midwife calmly reassured me that yes, the baby is coming now, and everything is going great. There are these events that we only experience a few times during our life time, pivotal, life-changing events that shape who we are, where we really have very little idea what’s going on and we are dependent on the guidance and support of those who have made these events their daily work.

Thinking back now, I’m also contemplating how differently I prepared for these events. When expecting my first child, I read everything I could about childbirth. All the gory details. Everything that could go wrong, what to pack, all the different alternative positions and drugs – their benefits and drawbacks. I knew of course that it was impossible to prepare completely for the experience, but it didn’t stop me from trying. And although I quickly abandoned my “birth plan”, I felt prepared and it calmed me down. One thing I remember asking my mother though was; “how do you know when it’s time?”. “Oh, you just know”, was her frustrating answer. And she was right of course.

I guess dying is somewhat the same, you know when it’s time – but it’s impossible to explain in advance or to know for certain when it will be. My mother, having sat with many dying patients in her work as an assistant homecare nurse certainly knew. But I was not nearly as prepared. I had no idea what happens when someone dies. That it’s normal to stop drinking and that you don’t give fluids since the body can’t process them anyway. Details like that. I spent all this time reading up on cancer treatments, side effects and complications, but I didn’t prepare at all for that last week of watching my dad dying. I guess it’s part of our human nature to not want to give up, to not want to face the inevitable. But think I could have used a bit more preparation, and I think that maybe there’s a taboo around dying that kept me from looking for information. It seemed morbid, almost a betrayal – was I giving up on him? But for me, I think it would have been good to be more prepared.

Similar differences also appear afterwards. While the experience of giving birth was described and discussed in detail with my friends, I feel hesitant to talk too much about the actual dying of my father. It’s not something you talk about. Maybe because it’s too painful, too personal, too difficult to talk about. But maybe, we should talk more about death and dying.