End of Life Dementia Care and Best Interests Decision Making:  Some potential considerations where the person is identified as “unbefriended”

By Martin Benfield
Approved Mental Health Professional (AMHP)

As an AMHP and having been involved in the design and delivery of a DoLS Best Interest Assessor (BIA) course, I have read the blogs on this site with interest.  I was moved by them to reflect upon both my personal experience of bereavement and my practice as an AMHP when called upon to assess people with a late stage dementia.  Some of these reflections were both poignant and challenging.  The issue of protecting the best interests of a person with severely compromised mental capacity is always complex, as all concerned are required to strive to ensure that any restrictions are necessary and proportionate to the likelihood and severity of harm to the individual.  Yet, in many ways, there may be no harm free option:  It is a particularly complex assessment to determine an appropriate balance between restrictions to keep the person physically safe and the importance of maximising autonomy and respecting any end of life wishes.

Generally these assessments will, as required by applicable legal frameworks and professional good practice, involve consultation with the person’s family and/or significant others.  Yet not everyone has people who can be consulted in such circumstances.  The focus of my thoughts therefore turned to how we can and should proceed at such times.

Objective 12 of the Government’s dementia care strategy (published in 2009 but still valid today) requires sustained effort to improve end of life care for people living with dementia.  In addition, it cannot be ethical to conclude that the “un-befriended” can be treated in a less person centred manner than those who have family or friends to help assessors understand their preferences, vulnerabilities, fears and anxieties.  Nor would it be acceptable to conclude that because of the different challenges in ascertaining what their wishes may involve, we can apply less rigour to the assessment of their best interests.  Indeed, it appears to me entirely pertinent to pose the question:

“In order to ensure equality do we need to apply extra time and resources to assessments in such circumstances?”

Where there is an important decision to be made for incapacitated people who the Mental Capacity Act (MCA) refers to as “un-befriended” the MCA requires the appointment of specially trained advocates (known as IMCAs).  In my experience IMCAs have very useful skills and perspectives in supporting the individual through the assessment processes and their involvement can be a significant safeguard for the person’s human rights.

However, having had the opportunity to train in Dementia Care Mapping and having undertaken some mapping work, I would like to propose that this person centred assessment tool should become more widespread.

Before I read Kitwood (1997), I had not really given sufficient thought as an AMHP to the potential for dementia care to be fundamentally person centred.  I had a sort of underlying assumption that is shared by many, that in some way by damaging the person’s short term memory and the attendant impairments in cognitive function, dementia meant that the person was somehow lost to themselves and others.  I no longer have this underlying assumption.  In terms of planning and implementing palliative care for a person with dementia, it is most desirable to minimise the distress and maximise the potential well-being of the cared for person.  While I acknowledge that mapping is a labour intensive process, I do believe it has the potential to be the most effective means for assessors to ascertain the impact, and therefore proportionality, of any restrictions upon the individual’s sense of personhood and well-being.

This potential would appear to me to be worthy of significant research. If we are to successfully improve end of life care for those people with dementia defined as un-befriended, we will need to develop further, tools such as dementia care mapping.  Mapping’s potential is as a means of ascertaining the person’s wishes and feelings that they may be unable to articulate.  In terms of the fundamentally person centred theoretical basis of DCM and in my experience (both personal and professional) people can and do demonstrate their preferences in the detail of their responses to the social psychology of different care environments and practices.

While I would like to see Dementia Care Mapping made available to all people who need care and support while living with dementia, I would suggest that it could be considered a priority in the circumstances I have discussed here.

Sources 

Kitwood, T. (1997)  Dementia Reconsidered; the person comes first, OU Press

Dementia Care Mapping 

National Dementia Strategy 2009

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3 thoughts on “End of Life Dementia Care and Best Interests Decision Making:  Some potential considerations where the person is identified as “unbefriended”

  1. Christine Valentine

    Thank you Martin for this very interesting and valuable perspective on supporting the personhood and well-being of EoL dementia sufferers who are also ‘unbefriended’. What you say really flags up the importance of developing assessment procedures/tools etc. that aim to ensure that as far as possible that all people are helped to die well/achieve a good death. And as you say, in relation to this vulnerable group of dementia sufferers that may mean more time and resources given to assessing their needs. I am therefore interested to take a look at your dementia care mapping, though I don’t seem to be able to access this via the link you have provided – I just end up with ‘page not found’. So would be grateful if you would check this out and hopefully provide another way of accessing it. Thank you!

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  2. Ken West MBE

    Martin, very interesting, mainly because I have just helped my wife handle her mothers admission to a nursing home. Even befriended people have difficulties over these issues. Whilst my mother in law was in hospital after yet another fall, the hospital social worker threatened a DOLS should we attempt to take her home. So we backed off, and allowed her to go to the nursing home, and now under the custody, as it were, of Shropshire Council social workers. After about four changes of social workers, we ended up with Fiona, who later proved to be an agency employee. We were effectively told to think for my mother in law, who is considered as without mental capacity, although this has not been confirmed in writing. The nursing home was instructed to take out a DOLS but, seven months later, nothing has happened. The entire process has so untransparent, bordering on total confusion. Even now, her financial situation is yet to be calculated by Shropshire Council, even though she is deferring her nursing home charges against the equity she has in her property. She is relatively comfortable in her home, and yet repeatedly asks to go ‘home’. We parry these requests by reference to how lonely she was at home, and she then forgets her request in view of her poor memory. Looking at her, I still see a person who was deprived of all decision making and institutionalised. Is is better for her, not being able to smoke or do as she wishes, simply because she fell over a little too much? Suffice to say that, much as I admire the staff who look after her, I have made a promise too myself never to enter such a home. The pampering, or subjudication, call in what you may, keeps her alive, yet only through a massive application of antibiotics, other medication and a mass of pads, and labour, to administer her bowels and bladder. The environmental consequences of all this waste, much of it extcreted medication, and the impact on those of us who continue to live fills me with foreboding. These decisions are far more complex than I ever imagined, and the desire to put longevity before quality of life is the real challenge.

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