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Tuesday, 28 January 2014

Trying less hard at the end of life, it’s the relationships which count

As promised, I am delighted to present a piece of writing from Alan Bedford, for an extra mid week blog.  

The A Graceful Death exhibition has benefited enormously from help, advice and suggestions from Alan over the years.  In his professional life, Alan has dealt with situations and problems that most of us would rather not have to know about.  His main area of expertise is in Child Protection, and alongside this, he has had much to do with Hospice work, and the NHS, and so has been very valuable to the A Graceful Death exhibition from the very start, and continues to be so.  Over to you Alan.


Alan Bedford

Trying less hard at the end of life, it’s the relationships which count  


Having just read an article about the over-medicalisation of death, Antonia Rolls (of A Graceful Death) suggested I wrote down my own thoughts from a personal and professional perspective. I watched both parents die, one in hospital and the other in a hospice, I ran health services mainly as a CEO for 18 years, have advised the NHS on quality and efficiency for a further 9 years, and have nearly completed 9 years as a non-exec director of a local hospice where I chair the clinical governance committee. My other area is child protection, with a first career as an NSPCC social worker and manager, and currently as the author of Serious Case Reviews when a child has died or been seriously hurt and there are concerns about professional working.  I was struck by the links between the tendency and temptation to over-medicalise dying, and the risks of missing the message being given by abused children when they display physical symptoms or behavioural disorders. Sometimes the search for a medical ‘cause’  of the problem can overwhelm the more sensitive and less tangible attempt to understand what the child is saying through their ‘illness’. I can see similarities between the tremendous effort to prolong the life of the terminally ill at the expense of letting nature take its course and making the best of one’s last days, and the effort to diagnose the symptoms shown by vulnerable children when they may just need their pain through abuse to be spotted and ended.  

I see in some case reviews the illness or developmental delay or ‘bad’ behaviour shown by children in response to the abuse they are receiving. Often abuse not fully recognised by the helping agencies. It is the child’s way of communicating their pain, and sometimes the professional response is to deal with the child’s presenting problem and try and tackle that, instead of really working out what is going on within the family.  This tendency is particularly evident when the parents are ‘difficult’ or challenging or frightening, and professionals find it hard to move away from the symptoms shown by the child to the major dysfunction in the parent- child relationship. When the focus is on, say, one child’s problems there is a tendency not to look at the whole family. Professionals also find it hard to challenge parents in case they hamper their ‘relationship’ with them. The end result is that the true extent of the abuse is not recognised for a long time as no one gets to the root cause of the child’s problems, or thinks deeper about what messages are being given by the symptoms shown by the child.

In such cases, the parents often encourage professionals to work ever harder, with say, their child’s behaviour or weight problem, and this can reflect the conscious or unconscious wish  of the parents to deflect from their own contribution to the child’s predicament, or  the parents unwillingness to consider  their own feelings about what is happening in the family.  I think that there are similarities with the care of the dying, where professionals feel the need to treat whatever is about to kill the patient (as it’s their job to do good) and family members want everything done to try and prolong life and treat the illness--and often find it hard to recognise that such effort may make life worse for their loved one.  The focus on the medical issues, with good intentions, then consumes effort which might be better spent in helping the dying person experience whatever it is they want to experience at the end of their life. It can also be at the expense of the family members enjoying, for want of a better word, a time with their loved one where the death is accepted as inevitable and they are helped as they go through this natural, painful, but for many people, lovely moment, as death is approached as a family.

As with child care cases, professionals can find it hard to focus on what the whole family needs.  If the focus is on treating in a way that is ultimately futile, the patient may experience more discomfort and miss a ‘good’ dying process with their family. (I am not talking about pain relief when I refer to ‘treatment’ but to measures which are aimed to prolong life which would naturally end soon).

In my health work I have had much involvement with complaints, where families often think the professionals have not done enough to treat or even rescue their loved one. In some cases, of course, professional work could have been better, but my impression has been mainly that the distress over insufficient medical care had actually disguised the psychological pain of the soon to be bereaved family – who in their battle to get that bit more treatment have actually missed getting the best experience possible for them and their dying relative.  And if the relatives are ‘difficult’, the professionals can work harder on the clinical issues  to satisfy them, just as difficult abusing parents often push  their professional workers to focus on  the child’s ‘problem’ rather than what’s going on in the whole family.

How can all this be changed. Not easy! In my view it’s not something that will be sorted by hospitals which are too busy, and rescue focussed. The answer lies much more in creating a culture which accepts death as inevitable and a process which supports the dying and their families make the most of their final times together. It’s why Antonia’s developing thinking about the end of life companion role - which can be done by professionals or by volunteers or someone from the local community is so important. This is because the more the dying person can be assisted to do, think, express what they want and relate well with those close to them so worried about the impending death, and the more relatives can be facilitated to have an open honest and fulfilling time with their dying loved one, the less it is likely that there will be demands for professionals to ‘do’ more and more to prevent the inevitable death happening for a little bit longer.

In other words what is most important is the emotional handling of the process, not a few days or even weeks that might be achieved through uncomfortable and unnecessary interventions. 

I will end this brief piece – which will need fleshing out in due course-- by sharing a couple of experiences from my own family which were far more important than if Mum or Dad lived a bit longer. My Dad died of bowel cancer – in a hospice, drowning in lungs full of pneumonia. Any desperate effort to prolong his life would have been futile and cruel. I wanted him to die and be out of his suffering. Just before he did he was talking about his beloved Hull City FC, whose scores had determined his weekend mood for 30 years.  In a brief moment out of his coma my brother asked if he remembered what had happened nearly 20 years ago that day (Good Friday).  He said that ‘the Southend fullback had scored from the half way line and that was that’.  Like that match, his support for the club usually led to disappointment, but as he said year after year, ‘there’s always next season’. As he lay dying at the end of another disappointing football year, and he talked to my brother about it he said, clearly knowing that he was leaving us soon, ‘There’s always next season’- and those  moments he shared with my City loving brother were  worth more to both of them than a little more time with us in discomfort.

My mother died of the hospital acquired C Diff (and it was an amazing opportunity that the NHS asked me to spend the next three years leading  the fight against C Diff and MRSA in the east of England). My son had a difficult late adolescence and early adulthood and hadn’t seen much of his beloved Grandma and she was hugely worried about him  As she was dying he spent a day with her and they really got to know each other again, and she died having decided he was wonderful after all, and so talented. He made amends for the gap in seeing her, and they re-lived the marvellous times they had when he was a child. Both of them moved on to very different places fulfilled. I am glad they had time for this as the hospital had stopped trying to rescue her.

In Antonia’s video (by Eileen Rafferty) of a most moving  relationship exchange close to death in

http://www.youtube.com/watch?v=s5Qs2yclDPo

and in her blog which is in part about the same event

http://antoniarollsartistextraordinaire.blogspot.co.uk/2013_06_01_archive.html  (click on the June blog on the right beginning 'At the end of the day....')  

you can see the importance of relationships leading up to death. The blog when the lady in question died is also very moving

http://antoniarollsartistextraordinaire.blogspot.co.uk/2013/08/the-first-day-of-eternity-for-julia-and.html 

I suppose in the end it’s about balance- balance between treating where it can make a real difference, and building in the expectation from early on that what is important are the relationships with and around the dying person, and allowing time for this to happen. Getting the emotional process right is so much more important than prolonging life briefly, especially if doing so uses up the time and effort needed for that necessary process.