COMPLICATIONS OR HARM AND THEIR IMPACTS
'Complication' is such a sanitised word. When doctors and nurses speak about complications the language is purely technical, distant and mostly third party. When the complication comes true, it is of course none of those, it is very personal; physically and emotionally hurtful with huge trauma to to the sufferers and their families, in so many ways that we can never understand or even describe.
The following is about a series of extraordinary real life happenings that relates to a normal British person from Portsmouth and his family. The words are a cut and paste from the court judgement with a few minor changes to help normal reading.
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The patient was aged 39. His father had for several years been undergoing kidney dialysis treatment and was suffering from renal failure. The patient was anxious to give his father the opportunity of a better quality of life in his well earned retirement by donating his own right kidney, thus sparing his father further dialysis treatment. The operation was performed on 26th February 2008. The hospital admits that the operation was performed negligently, and to a degree recklessly. There are proceedings before the General Medical Council against the surgeon in question.
The consequences of the hospital's negligence have been catastrophic for the patient and his family: physically, psychologically, emotionally and financially. Although the patient's right kidney was successfully removed and transplanted, the patient suffered irreversible failure of the left kidney. In fact he should never have been advised to undergo the operation at all given the grave dangers involved. That negligent advice was compounded by serial mistakes during the operation itself. The patient's life was saved only after many hours on the operating table during which he received over 100 units of blood and fluid transfusions.
During the course of the operation the patient suffered further complications which have had far reaching consequences: a minor myocardial infarction; ischaemic damage to the bundle of nerves known as the lumbo-sacral plexus, which supply the right leg and foot; a thrombosis of the inferior vena cava.
The patient was left in total renal failure. He was in hospital for nearly two months, during which he started to receive haemodialysis. He developed a serious drug induced confusional disorder. There were further re-admissions to hospital in March and April 2008, following which he received dialysis treatment three times a week as an outpatient for a year. This treatment affected him profoundly. He became severely depressed, frequently contemplating suicide. He contracted serious infections, one of which necessitated a further admission to hospital for four days in October 2008.
The patient's own act of altruism and family devotion in donating a kidney to his father, which cost him so dear, was reciprocated by the patient's sister. With the same outstanding altruism and family devotion she in turn donated a kidney to the patient, at very considerable psychological and emotional cost. That operation, performed on 27th March 2009, was successful. It released the patient from an indefinite regime of dialysis. However, he lives with the constant fear that his body will reject the kidney and it is common ground that when he reaches his early sixties that kidney will require replacement. This uncertainty, and his experiences generally, have left him with an understandable obsession about his health.
The renal failure the patient suffered increases significantly the risk that he will suffer from ischaemic heart disease and a stroke. Consequently he adopts a very careful lifestyle and diet. He has had high blood pressure and high cholesterol levels which cause him constant worry. The immuno-suppressant drugs he takes, in particular to control the CMV, greatly increase the risk of his developing other debilitating and life threatening conditions. The consequence is that he has become fastidious to the point of obsessional about personal and general hygiene, which impacts upon the whole family. He can be irritable and overbearing. He is prone to bouts of weeping.
There are further serious physical consequences. The nerve damage suffered during the negligent operation has resulted in altered sensation below the right knee. There is hyper-sensitivity, pain and loss of sensation in various parts of the right foot, and clawing of the first and second toes. He has had surgery on the first toe. Further surgery had been planned to straighten and fuse the toes but this drastic measure may be avoided by regular injection of botulinum toxin for life. The issue surrounding this problem with his foot has a bearing on his residual earning capacity. Currently he is unable to run, and walking on uneven ground and stairs presents some difficulty.
The medication he takes has had unpleasant side-effects including the profuse growth of unwanted body hair, the development of skin acneiform lesions and the deposit of facial and abdominal fat. His inability to exercise has also led to undesirable weight gain. Prior to the operation, the patient was a healthy, fit and active 35 year old man. He took great pride in his health and fitness, running several kilometres each morning to set himself up for the working day. He had enormous energy. He was cheerful, optimistic and extrovert.
Now the picture is very different. At the age of 39 his daily life revolves around his health worries. He is constantly fearful of infection or changes which may increase the risk of the kidney being rejected. Any venturing from the strictly enforced hygiene of the home is fraught with anxiety. He lives with the certain knowledge that the kidney will require replacement by the time he reaches the age of 61 and that this will be preceded by symptoms of progressive renal failure. It is agreed that his life expectancy has been reduced by 10 years.
The patient's wife says that the patient is a shadow of his former self. He is lacking in energy. He is exhausted by 9 pm and generally has to be in bed by 10 pm. He is moody and irritable. Their marriage, though very strong, is constantly under strain. The children have been affected and distressed by their father's condition and behaviour and he has bridges to build there.
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The above example was of course extraordinary, further the issue reached the court of law otherwise we would not have heard it in such a profound and full sense. It might have reached us through the press in which case we would have discounted it for journalistic embellishment. In reality most if not every healthcare related 'complication' has impacts on patients' lives which are significant but we will never hear about it.
Perhaps it is time to start describing some of the possible known effects of complications on patient's lives should be described in a way that it really affects patients lives. Let me explain. Do you think the hospitals, doctors or nurses when explaining or consenting patients for surgery ever tell them 'if you had one of the severe complications your marriage could be constantly under strain; your children could be affected and distressed by your condition and behaviour and your may need bridges to be built with them as a result''?
For instance When we talk about surgery on blood vessels in the limb we mention 'amputation' as a possibility. Does that really describe anything to a patient who has never experienced or seen amputation before? Perhaps we ought to tell them how in the initial days even to move from side to side in a bed they would need support, their entire body will need to put in daily heroic effort to cope, they will not be able to do any sort of work for many months, if everything goes well it will hurt during wound healing, during dressing change, during physio, during limb fitting, when using the limb. When goes wrong it will hurt more, more often and for longer – if it goes wrong even more it will hurt every day of their lives (phantom limb pain). They will need to know that the pain will need strong pain killers, strong pain killers will cause constipation, constipation could cause fissure which will hurt even more. They would need to know that if the wound breaks down their raw cut bone could stick out. Well, even after these descriptions we haven’t even made a start on the long list and impacts in a proper way!! These are only physical.
Perhaps we need to tell them that they may not be able to drive a normal car; the pain could drive them to become an alcoholic if they are lucky and a drug addict if they are unlucky. Perhaps they need to know that their family and friends will provide sympathy which the patient could misinterpret and end up feeling patronised resulting in phenomenally strained relationships all around.
God help us avoid complications.
Complications are true complications only when every effort at our command is made to avoid them from happening and yet they happened, otherwise it cannot be called a complication; it is called harm. As an illustration, if a patient developed deep vein thrombosis due to omitted drug thromboprophylaxis, poor mobilisation, poor hydration or pelvic injury at surgery that DVT is healthcare caused harm; similarly if a spinal or epidural catheter was removed without regard to when chemical thromboprophylaxis was given and the patient developed spinal cord problems, that would be harm caused by heal. DVT prevention is an easy example, there are thousands of other ways that healthcare's omissions, commissions and disagreements hurt patients; they can no longer be euphemistically called complications any longer.
Here is something uncomfortable, a number of these problems happen because of us (organisation or individuals) though we are often unable to even recognise that.
Once again, the impacts of complications on peoples lives is something that healthcare professionals would not be able to even begin to understand, or describe. There are specific tried and tested methods to avoid harm or to reduce them to their minimum possible. Most healthcare providers do not have to do world beating cutting edge stuff, they only have to put in some effort to just avoid harm in healthcare. If it was done that would count as Success in Healthcare.
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