Being human in the face of ‘personalisation’, and what that means when we come to the end of our lives

Published on: Author: Jacqueline Kandsberger Leave a comment
Jackie Kandsberger on the University of Glasgow Dumfries Campus

All over the USA people are crying out that we have lost the ability to communicate with our fellow man, that words no longer even have the same meaning to each of us in our polarised society. Brexit, Trump … slowly the eyes of the world are turning to the next western elections: France, then Germany.

When German chancellor Dr. Merkel announced her candidacy this week she reaped harsh criticism from right-winged foreign press concerning her main focus on the ‘disruptive process of digitalisation’; with notorious Breitbart in the USA demonising Merkel’s views through the anti-free-speech lens and the Daily Express in the UK proclaiming her ‘deluded’ for ranking this issue above the refugee crisis she ‘mishandled’.

But to give Merkel’s rhetoric on the new age of ‘digitalisation as disruptive’ a few moments of our consideration can be eye-opening, and will hopefully also answer your question of: ‘what on earth does all this have to do with being human at the end of life?’.

In her announcement Merkel compared digitalisation to the likes of the invention of the printing press and the industrial revolution. Innovations that not only changed, but destroyed previously existing processes, having implications for society on every level.

While keeping Germany, as a social market economy, at the front from a business perspective is clearly top of her agenda, she also emphasised the impact the digital world has had on our willingness and need as individuals to communicate and engage with people that are not minded like us.

Digitalisation has made it possible to personalise practically every aspect of our life; from what newspapers we read to the care that we receive at the end of our lives.

It can be difficult to be seen to critique or even question having choice and control, but, as has been argued by Scottish Professor of Social Work and Social Policy Ian Ferguson, the agenda of personalisation comes hand-in-hand with neo-liberalism, which can come in conflict with social justice.

My research explores the operationalisation and benefits of advance care planning (ACP), a concept that embodies the wave of ‘personalisation’ (choice and control) so enforced by the digital age.

Very simply put, ACP it is a dialogue between the dying individual, their family, and healthcare providers about wishes and preferences the person has for their care when their situation deteriorates and for their death.

Yet, similar to what has happened to the media, particularly in the U.S., the praised achievement of providing and having choice, seemingly important above all else at times, has brought with it some struggles.

As, for example, Jane Seymour’s research in 2010 with healthcare providers found, there is a fear that hiding behind the mask of personalisation and choice, we have actually created tick box exercises and conversations which are governed by predetermined expectations of what someone should want at the end of life.

Furthermore, the implementation of this dialogue has been criticised since its inception in the early 1990s for focusing too heavily on the medical rather than social aspects. Despite, as Singer’s research in the U.S. in 1998 concluded, the latter actually mattering more to most patients.

These studies, calls and reminders have, again and again, tried to re-emphasise that first and foremost we are human, social and not clinical, and that this ‘talk’ is also a rite of passage. While we may not all have exactly the same priorities, our decisions are nestled firmly within the networks of relationships and needs that we all have, as was, for example, discussed by Borgstrom and Walter in the context of UK end of life policy in 2015.

Some may blame the difficulty of measuring social components and benefits for the imbalance in focus and may even blame the word ‘social’ itself for having less merit in our society than the word ‘medical’.

But maybe the word ‘social’ also contains a subtle reminder that as humans we value companionship. Because, when asked what is important at the end of life, most tend to point to the social, we need to acknowledge that personalisation isn’t everything.

Personalisation has countless benefits, no doubt, but when facing death becomes more about having choice about medical treatment than about what we really care about as social beings, we need to consider how we implement it and to what extent we truly always value it.

Are we convinced that individuals should, want, or are even capable of having control and making choices irrespective of their networks and surroundings?

Or is it time that we question certain applications of this currently untouchable ideal of providing choice above all else?

I am only just developing my views on this, but look forward to delving deeper into this discourse both in my research, as well as personally.

Polarisation and a loss of engagement between citizens due to no longer being ‘forced’ to communicate on one platform is not the only challenge that has occurred with the ‘disruptive process of digitalisation’.

Healthcare systems have agreed to the challenge of ‘personalisation’, but, in my opinion, when it comes to advance care planning its bureaucratisation and medical focus are conflicting and taking away attention from what we really need more of: the time to communicate with health and social care providers on the basis of the values and trust that we share, human to human.

Jackie Kandsberger

  • Borgstrom, E., Walter, T., 2015. Choice and compassion at the end of life: A critical analysis of recent English policy discourse. Soc. Sci. Med. 136–137, 99–105. doi:10.1016/j.socscimed.2015.05.013
  • Ferguson, I. (2007). Reclaiming social work: Challenging neo-liberalism and promoting social justice. Sage.
  • Seymour, J., Almack, K., Kennedy, S., 2010. Implementing advance care planning: a qualitative study of community nurses’ views and experiences. BMC Palliat. Care 9, 4. doi:10.1186/1472-684X-9-4
  • Singer, P.A., Martin, D.K., Lavery, J. V, Thiel, E.C., Kelner, M., Mendelssohn, D.C., 1998. Reconceptualizing advance care planning from the patient’s perspective. Arch. Intern. Med. 158, 879–884. doi:10.1001/archinte.158.8.879

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