The BMJ recently published a Personal View article by William Tosh, an anesthesiologist who shares his experience of looking after his father during his last days of life: Choosing to die at home can be tough on the family. In it, he describes the feelings of guilt that he and his close family felt whilst trying to support the best they could his father’s wishes to die at home. Tosh talks about how he struggled with feelings of guilt and resentment, having his home “invaded” with medical devices and staff. His father received excellent end of life care, however he questions if dying at home was the best option in that particular case. He explains how
feelings of panic […] began to surface: there was now nowhere for the family to escape.
I think Tosh has written a very brave letter, sharing his emotional roller coaster and exposing personal feelings in a sensitive manner. More often that we would like to admit, another physician’s account of experience is much more valued than a lay person’s similar account. In this sense, Tosh’s text is a very powerful one, since it brings to the arena a topic that it is not always easy: when the dying person’s wish to die at home is not completely shared by their relatives.
In the last decade or so, there has been a shift in palliative care, acknowledging that most people prefer to die at home, and hence teams and policy makers have been advocating for it. On the other hand, some literature has highlighted an underlying issue: the dying person’s views may not be the same as their carer’s views. In other words, I may want to die at home, but my family may not be prepared for it. This can bring feelings of personal inadequacy (am I a bad person? Don’t I love my father/mother/husband…?), guilt, isolation (it is not easy to talk about this) and resentment. Tosh’s letter illustrates this very well.
I do realise that I am exposing my own reactions to Tosh’s article, and of course my opinion is biased by my own experience of helping dying people and their relatives in a Mediterranean culture. Nonetheless, I think articles like his are a valuable addition and much needed, because they bring attention to a sensitive topic and encourage us researchers and clinicians to discuss it in the open. There are probably no easy answers: each family is a different world, and each disease is different experience.
What is your view?
The first surgery in the world performed using Google Glass took place last week in Madrid, Spain. The actual operation was on a 49-year-old man who needed some work on his knee.
Google Glass was actually used not as an aid during the operation, but to broadcast the procedure worldwide to a group of professionals. Around 150 people were able to follow the operation live, watching exactly what the surgeon was seeing, via streaming video thanks to Glass Streamer, the Google Glass app developed by the Spanish company Droiders.
Now, I have always been very critical about Google Glass in general, and in particular about its use in daily life. This parody really sums up what I think. But when it comes to eHealth, I think there is huge potential for these kind of augmented reality devices. Not only in terms of learning, teaching and exchanging knowledge, but also for its use by (e)patients. For instance, as you may know my area of expertise is palliative care. This means the care of terminally ill people, who are often very limited in terms of movement and access to resources, especially when care takes place at home (research keeps showing that, given the choice, most of us would rather die in our own homes). So just think about the possibilities that these kind of devices could offer in the near future. Seriously ill people, and their caregivers, could have a much more direct interaction with their medical teams from a distance.
For example, consider this scenario. Jane is at home with her partner Joe. Jane is very seriously ill: she is bedridden and has a bad ulcer that needs cleaning, and the dressing needs replacing. But Joe is unsure how to proceed, so he calls the nurse at the hospice. Joe can’t really explain very well how the ulcer looks, after all, it just looks bad. So the nurse finds it difficult to guide him, and the whole situation takes a lot of time and creates a lot of unnecessary stress on both sides.
Now imagine that the hospice has given a pair of augmented reality glasses to Joe and Jane, the same way they have given them other special equipment. Joe uses the glasses to show the nurse how the ulcer is looking, so that the nurse is able to a) assess the actual state of the ulcer, and b) appropriately guide Joe through the process of cleaning it and changing the dressings.
This may seem a futile example, but when one is at home alone, looking after a terminally ill relative, it is these little things that make a world of difference.