We should also discuss quality of life

The Dutch Prime Minister Mark Rutte keeps tellings us: what we do or don’t do in our care system is fully motivated by safety reasons from beginning to end: ‘It is better to be safe than sorry.’ Then again, is safety the only valid criterion left when discussing what care should look like in times of Corona? Haven’t we got anything better?

Usually the highest ranking criterion for quality in care is considered to be ‘quality of life’: this is what is being pursued in The Netherlands, this is what counts when evaluating care, and this is what quality systems and policy choices claim to be about. And also this has already been the case for a very long time and on a global scale. So why then should this not be the case now, is suddenly something amiss in this ‘quality of life’?

In The Netherlands there is no end to stories about the dire state ICU patients find themselves in, how miserably they often die and how harrowing the life of people living in nursing homes, either with or without being struck by corona. Recently Anne-Mei The, a Dutch professor in Longterm Care and Dementia, poignantly urged for attention on the subject, and more often family members are also offered an opportunity to speak up in the media.

Care-givers may do everything they possibly can, against the backdrop of these stories one will have great difficulty in maintaining the claim that here care contributes to ‘quality of life’ – however important that goal might be in itself. If we were to postulate anything of the sort, it would rather refer to ‘quality of surviving’. Or, if only it would not sound so cynical, we could refer to the ‘quality of languishing’. Had we agreed not to focus the care on ‘living’, but on ‘living together’ instead, most likely this might have evoked a different policy.

This formula of ‘quality of life’ is a complex one, yet over the years it has been developed, in care and beyond, by the respective authorities in such a way as to be operationally defined and hence measurable. According to the Dutch ‘Nationaal Kompas Volksgezondheid’,((1)) ‘quality of life’ is best described as the functioning of persons in physical, psychological or social areas, to the extent they experience it themselves and as shown by objective criteria.

Subjective

The benchmark of this would be ‘satisfaction’ and its measurability has all the respectability of an objective assessment of actually subjective experiences. Through government financed channels for scientific research, millions of Euros have been spent over the last couple of years to improve the usability of ‘quality of life’ as a criterion in care.

Usually ‘quality of life’ will do to organize care, yet already well before corona often enough it turned out to fall painfully short in many instances. For instance, it became clear in discussions concerning ‘end of life’, the intention of care as to ‘working on the quality of life’ would not be very helpful, to say the least. Those involved would rather be looking for ‘quality of dying’. One might contend, by way of some semantic acrobatics, that ‘quality of dying’ falls into ‘quality of life’, yet this not only sounds foolish, it doesn’t solve anything either.

Sadly enough, in psychiatry professional help is regularly sought after for assisted suicide, as life and suffering are experienced to be hopeless. Here also this idea of care contributing to ‘quality of life’ is downright out of place. In palliative care as well, the criterion does not apply. Nor does it in oncology often times: the cancer can no longer be averted and specialists, general practitioners and nurses are actually not so much addressing a ‘quality of life, as they are dealing with a ‘quality of parting’, a coming to terms with imminent death, leaving behind one’s children, a beloved, one’s work, dreams and future. Of course, one strives for this phase to be as much as possible without pain, fear and shortness of breath, yet those efforts could hardly be qualified as addressing ‘quality of life’. ‘Life’ is not the issue of what care is about in this very instance, nor is ‘quality’.

Morphine

By taking the sharp edges off the suffering – for example by putting people asleep, by sedating them (using morphine) of by feeding them through an abdominal probe – would it really be appropriate to say: we contribute to your quality of life? It would be more accurate and unassuming to say: we will try to alleviate your suffering – never mind ‘life’, let alone the pretending to improve the quality of it.

This very problem arises now once more in caring for patients struck with corona. Care-givers in unprecedented ways put in every effort to offer help to people. But does the criterion ‘quality of life’ help them to decide what they should or shouldn’t do? The overall impression is mainly that the usual criteria for quality of care have been overridden, under the pressure stemming from the crisis.

Care however, intending to do well, helping and supporting people to find their way in the situation they have gotten into (from deep depression or metastatic cancer, to suffocating shortness of breath and the risk to get infected): what to them would constitute a satisfying way to deal with it and in what way might care contribute to all this? What is making sense to the one involved in that situation? What kind of help or care does not feel right, by being out of proportion, not fitting into one’s own life, an asset not worth pursuing – in the sense of it being a ‘goal’ – and coming at too high a cost?

Focal point is not ‘life’ as such, yet ‘life being fragile’ (this is the actual, painful reality and care should deal with precisely that). At that the term ‘quality’ has been traded in, and for: what is satisfactory for the patient concerned. It is a mystery how one might speak of ‘good’ care if this care is not experienced as in some way making sense, not in a general way, but in the actual life of the patient involved.

Being kissed

Dealing in a ‘satisfactory’ way with a fragile existence could mean just about anything: to really go for full recovery, refraining from any intervention, wanting to be kissed by one’s next of kin, to consciously face death, by no means wanting to suffer alone, to go down praying and cursing. Who is to say? Yet all of this has very little to do with (client) satisfaction.

These days we hear stories from elderly people saying: I’ve had a good life until now, I cannot and I will not go without visitors and I fully accept the risk it involves. Not having visitors merely inflicts incisive suffering and as such is a lot worse than any risk connected to having visitors. Things could of course turn out wrong, yet receiving visitors fits in with how we wish to live our life and how we choose to relate to our fragility. Death might befall us sooner, yet it will be within a life meaningful to us.

Corona causes a crisis and everything in our care system is now on edge. The many tricky questions we get to answer at that, require a different ultimate goal. One which considers at the same time care and existence to be relational (as in ‘living together’), as well as not revolving around ‘life’, but being about the fragility of existence. And one which finally admits we could be doing a million things, yet good care will limit itself to the things which are meaningful to the person involved, and allowing for a satisfying way to deal with his or her transience.

It is inappropriate to attribute a standard of ‘satisfaction’ to this. All of the above should be helpful to us, right now as well as after the corona crisis, in reflecting on what is to be required from us in care. Thinking quality has been sidelined, yet with a different idea of good care, it would not have come to that and safety would not have had the final say now.

Note
1)) a website of the Governmental Institute of Public Health

Photo: © Lava Lavanda, Unsplash

About the author: Andries Baart

Andries Baart (1952) is Professor (emeritus) Presence and Care, now Visiting Professor to Utrecht Medical Centre, department of psychiatry (The Netherlands) as well as attached to North-West University (South Africa).

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