October

"Does my father need this heart pacemaker?"

John's daughter, Ann is not sure who should make this decision as her father has severe dementia and cannot decide for himself. She is worried that if she is asked, she will make the wrong decision.

This is not the easiest question to answer, but after an hour's consultation we managed to make an informed decision, which Ann felt was in her father's best interest.

Ann brought her 89-year-old father John, to my clinic for a follow up appointment following his admission to hospital with a collapse 3 months earlier. John suffers from dementia, which has been deteriorating over the last 6 months to a degree that sometimes he does not recognise his daughter. He is still walks unaided and is eating well. Paula, the manager of the care home where John lives, came to this appointment too.

Following his collapse, John had 24 hour monitoring of his heart. This showed that his heart sometimes stops beating for 2-3 seconds. This usually happens because in some of us our hearts over the years suffer from effects of high blood pressure and other problems and become weak. When the heart stops even for 2 seconds it is enough to reduce the blood flow to the brain and this can bring on a collapse or even unconsciousness. One of the ways to deal with this condition is to insert a pacemaker which will monitor the heart at all times and when the heart goes into a pause the pacemaker will take over the heart beating function.

This procedure (it is not an operation) is usually done under local anaesthetic and can be offered as a treatment option for a patient suffering from dementia. Dementia, however, does change the game plan. John is unlikely to follow medical instructions and lie still during the procedure. Therefore to ensure that the procedure is safe it will have to be done under general anaesthetic (GA, patients are put to sleep). Patients with dementia do not recover the same way as patients without memory disease and GA is likely to cause acute confusion or delirium in John. A hospital environment is likely to add to his confusion. Patients with dementia rely heavily on the familiarity of their surroundings and the faces around them. All of this is lost during an acute hospital stay. Regaining mental and functional capacity after a hospital stay may take weeks, months or may even never happen. In addition to this when patients get acutely confused they develop other complications such as stopping eating and drinking, development of urinary and chest infections and dehydration.

I explained to Ann and Paula that in circumstances such as John's, where the patient cannot make a decision for himself, a best interest decision is made. This process involves finding out the views of healthcare professionals involved in John's care as well as those of the family. It is a joint decision made in the best interests of John.

At the end of our consultation we all (John asked me to talk to his daughter as he trusts her) agreed that the risk of the procedure outweighs the benefits to be gained. It was felt that the procedure might prolong John's life but associated complications are likely to rob him of whatever little quality of life he has left. There is a high risk that the procedure might shorten his life, as acute delirium (confusion) after GA in patients with severe dementia is known to lead to rapid deterioration and death.

John's GP, whom I contacted later and Paula agreed with the above and a best interest decision was made that the pacemaker insertion is too risky for John. His heartbeat pauses, some of them associated with passing out, should be treated symptomatically, i.e. all care should be directed at ensuring he is comfortable and not in distress, and in the case of a longer pause nature will be allowed to take its course.

Ann admitted that this discussion was painful but also much needed.

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