More and more, we read in the media that an app a day keeps the doctor away. It is a catchy phrase, yes. But I find it unsettling that it is heard so often, because it seems to imply that eHealth is a substitution to traditional medicine. From my point of view, eHealth is not a substitution, but an addition to health services. An addition that will improve health services, empower users and increase knowledge both for patients and health professionals. eHealth is progress, is the natural evolution of health care, but it is not the end of health care.
One way of categorising eHealth interventions is to divide them in:
- Purely digital interventions: these are web-based health interventions where there is no interaction with the health care professional at all. Everything happens online. An example: the app MyFitnessPal, where people can track their nutritional intake and other variables, and act on their health based on this information.
- Hybrid interventions: where there is a mixture of digital action and human interaction. An example: interventions which use augmented reality (AR) combined with traditional cognitive behavioral therapy (CBT) to treat phobias.
Each have their own advantages and disadvantages, which I will cover in another post. But my point is that eHealth cannot be seen as a separate element from health care, or an alternative. Whether it is purely digital or hybrid, in order to be effective, eHealth must always be embedded within health care services. Furthermore, it will scarcely work if the medical community sees it as a threat.
I can see that “an app a day keeps the doctor away” can be read as a way of empowering patients, and this is good. eHealth responds to a change of paradigm, where people take ownership of their health issues in a way we have never seen before. But it is also a shallow, easily misinterpreted statement. So I think we must be cautious when we use these kinds of statements social media: not everybody is familiar with the field of eHealth, and it may lead to attitudes that could be damaging in the long term, both for users and for professionals.
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.
The Last Will, by Nikolay Bogdanov Belsky
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?