As I begin to write this article with Euronews in the background, my attention is caught by a feature of a few elderly people in a home for elderly is Austria (if I heard correctly) who started to brew beer in a traditional way. The feature shows men and women in their 70s and 80s starting from scratch and bottling beers which they call ‘Grandma’ and ‘Grandpa’ (in their language). They stick on the labels manually and the home manager loves the beer, showing that sometimes with unsteady hands, the label is not straight. But this does not matter and adds to the genuine nature of the product. One of the elderly is the manager and it is a profitable business. But more than anything, they say, it gives them meaning and is ‘better than hanging around all the day’.
My father has had a similar experience in the home he is presently at. He noticed (and suffered) some shortcomings, especially with organisation. Drawing on the fact of decades experience in management, including running a large factory in the furniture industry, and later running the non-urban road section under both parties in government, and also on the fact that the home manager took a liking to him, he wrote a proposal of twenty pages (in his case it was 90 pages as since he is 90% blind he had to write with a black marker in large letters which we typed out for him). This gave him meaning for a while and he was happy to have something useful to do. He is anxious to get feedback.
One often sees suggestion boxes in such places. Suggestions may range from small things to the large, as this proposal. In the latter case it is obvious that with the lack of local nurses and with the communication of problems of foreign nurses, combined with a structure which is different from the proven ward system in hospital where you have responsible Nursing Officers and Deputies, the personal attention can be lacking, outside the normal daily routines of the workers.
One does one’s best but getting feedback from inmates and carers is very important. This has been taken on by the Royal College of Physicians of London which published an article in their last issue of Commentary, a journal which comes with their main Journal Clinical Medicine, this month entitled ‘Making a Better Health Climate’. In it, an article entitled ‘Working outside the box’, speaks about ‘why patient and carer expertise matters for healthcare improvement and how it can be better utilised’. This obviously caught my attention.
The article points out that ‘although the principle of inclusion is established, neither the range of the potential contributions nor the challenges of harnessing those contributions are widely understood’, and that, ‘No idea for improving healthcare is complete unless it is informed by patients and (their) carers’. The perspective of the users must be taken into consideration but this is seen as passive and instead they recommend that, ‘patients and carers should be seen as critically important sets of healthcare actors’. ‘Without this, health services remain disconnected from people’s lives – providing ‘solutions’ that are experienced as impracticable and inaccessible, leaving people feel isolated, alienated and unsupported’. Of course the article does not refer only to elderly, and ‘carers’ refers mostly to those family or friends who look after these people at their homes; but it also refers to Elderly at home or in Homes, and perhaps the carers which encounter them on a daily basis.
The public-private partnership has worked wonders locally in providing Homes for the elderly. The government buys placements from these homes. Therefore, everyone benefits. However not all homes have a proper organisation in place and there are clear communication issues, with answers like ‘Yes, Yes’, ‘I will tell’, and ‘sorry, sorry’. Of course, too many “sorry” instances miss the whole point. These mini crises are moments of opportunity. Outside the private sector being a business, they also have to embrace the mission and find meaningful goals. It is not only about making money (hopefully). When someone reports that people are leaving furniture outside in the rain and carers obey once only to see the issue repeat itself, then action has to be taken, or something is clearly wrong in implementing change from suggestions.
To quote again from the article:
‘Patients and carers do not only bring their care experiences to the table, but a very wide range of diverse insights and capabilities’
If services are going to be ‘fit for purpose’ they need to seriously consider what it feels like to be in need of and subject to, healthcare and other services’
Some patients bring ‘their experience and vantage point in important and compelling ways’; other ‘are highly skilled at eliciting and sharing insights relevant to improvement’.
This can certainly be done. But a concern is also raised in this important article, very relevant to the care of the elderly: ‘While the principle of including patients and carers in improvement process is widely accepted and espoused, ‘inclusion’ sometimes only takes place in a superficial way… even when well-intended, this can be experienced as marginalising or patronising by patients and carers’. And, ‘when patient and carer are just ‘consulted’ at one stage, their capabilities are not being fully drawn upon and they may not be being treated with respect’.
Following the Bioethics Research Programme of the Faculty of Medicine & Surgery’s successful Erasmus project on End of Life Care (EndCare) (done in collaboration with the faculties of Laws and Theology) which dealt with hospital issues, we are now moving to the community (EndCare 2). This will involve all health care professionals in primary care, including GPs, nurses, physiotherapists, occupational therapists, etc. but also Hospice, the local councils, the local Church and of course Homes for Elderly. The launch will be done soon, and learning from the past, we will also include other faculties, including the Faculties if Health Science, and Social Well Being…and of course, Patient groups. Clearly this entails challenges, but having spoken to the Minister of Health and Deputy Prime Minister, and the Minister for Active Aging, I am sure we will get the full support of this project.
When we see our elderly in homes and at home, we often say that we would not want to be like that. Whilst many elderly are able to leave the Home for the day, others are dependent on walking frames, or even bed-ridden. Many look at old people and wish they will not come to that stage if they just see the handicaps. It is up to us to make old age worth living by improving the quality of life rather than being seen as a pitiful stage of life, without meaning or fulfilment. Their body may be old, their mind is still young. They can contribute considerably. We need to invest in their ‘wisdom’ – or have we lost this concept of the wisdom of old people to the internet and our feeling that we do not need their advice? Are we simply using them to make profit, or are we using our entrepreneurship to provide a meaningful service? Endcare 2 will focus on this and palliative care for the elderly, which often is connotated with cancer and imminent death. Palliative Care in the aging is about dealing with elderly’s handicaps and allowing them to continue to live actively. We need to take their suggestions seriously. They are the ones living through the process.
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Pierre Mallia is Professor of Family Medicine and Patients’ Rights and teaches University of Malta. He Chairs the Bioethics Research Programme of the Faculty of Medicine and Surgery. He also chairs the Bioethics Consultative Committee. This article is his personal opinion and does not represent the opinion of any committee or board he serves on.