After my mother's death I realised modern medicine fails to prepare us for the inevitable

The Liverpool Care Pathway has brought death back into the headlines, but instead of the open discussion we need, it's become another hysterical debate
  • @drhlj

Recent weeks have seen an abundance of news articles and commentaries about the now controversial Liverpool Care Pathway. This is to be welcomed. Despite the oft-repeated mantra that the media is full of bad news, death itself rarely makes the front pages. It crops up every now and again in other debates, about life-extending cancer drugs or assisted dying, but it’s unusual for news reports to discuss end of life care and death. What happens when we die? How does the NHS help us deal with it? What is being done to ensure we always act on the best evidence?

My own experience of death is the loss of my mum when she was 55, two years after she was diagnosed with ovarian cancer. The cancer was advanced and aggressive, bringing countless rounds of surgery, chemotherapy, clinical trials and hospital stays. When we were told nothing more could be done, my dad, brother and I gave up work to live at home and look after her, 24 hours-a-day, until she died.

The medical treatment she received was generally good. Those treating her were the best in their field and the chemotherapy was cutting edge. However,  I have always felt her treatment was lacking from the perspective of mental health and preparation for the inevitable. The reasons for this I’m sure include the fact we didn’t want to accept what was happening, but those looking after mum really did very little to prepare us for what lay ahead, including the specialist palliative care nurse who visited us at home when mum was dying. Although I asked point blank what to expect, I was told not to worry, mum would simply spend more time asleep and quietly pass away. If only. The weeks over which my mother passed away were a drawn out and traumatic experience that I would not wish on anyone.

Several times I tried to get information about what would happen, from all the places you might expect, but none of it cut the mustard. It may be difficult to predict exactly what will happen in individual cases, but we weren't even told about what might happen and how to prepare for it. Even when it was staring everyone in the face, there was little mention of the elephant in the room. Instead, the stark reality of what was happening was glossed over by those whose honest advice we might have benefited from. I’m sure our family is not alone, and although we may not all want such detail about what happens during death, most of us would admit we need to know it, however hard that might be. Informative conversations about the end of life give patients a better quality of life and help families cope with their bereavement.

Given the fact that death will affect each and every one of us, we are surprisingly bad at talking about it. There are obvious reasons. For most their own death or that of a loved one is the most difficult thing they are likely to experience, and our fear and reticence are understandable. But by largely avoiding the issue we deny ourselves the opportunity to deal with it in a healthier and more constructive way. We should value discussions about quality of death as much as we do about quality of life, and the row about the Liverpool Care Pathway – as it is being painted – is an opportunity for such a discussion.

Unfortunately this sensitive issue has been turned into a sensational ‘for’ and ‘against’ debate by some. It's actually a little more complicated than that and although it’s right that the Government give this issue attention, a knee-jerk reaction to media scare stories may not be the best response. Admittedly it is also tricky for medical charities, the NHS and others working with people at the end of life. They have to provide honest information without dashing hopes; to inform rather than emotionalise.

As a society we should be more honest about death: it doesn’t just affect the elderly or those with cancer, palliative care may sometimes be better than expensive drugs, and mental health is as important as physical health. The Liverpool Care Pathway may not be perfect, but let's not throw the baby out with the bathwater. Death deserves deliberate and thoughtful attention.