It should be easy to die at home. So why isn't it?

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How bureaucracy can make a home death unbearable for family members who have to deal with the fallout.

For those who are left behind, no death is a good death. We find it very difficult to let go of loved ones even though, in most cases, they have reached a point where they are at peace with approaching the end of their life. But that pain of loss can be exacerbated immeasurably by the stress of being unable to get the home death certified because the correct procedures have not been followed.

My father suffered from Parkinson's disease and as he approached the end of his life, we asked that a palliative care package be set up so that he had the chance to spend his final days at home. The medical staff at the hospital where he was treated explained that once he was home and the package initiated, the end would likely occur in days rather than weeks. So, mentally, we were as prepared as we could be for what was to come.

After a living with Parkinson's and dementia for more than a decade, my dad's death was expected, so it came as a shock that there seems to be little communication or common policy through which GPs and registrars can confer after someone has died and that is the reason I have written this story. When my dad passed away at around 2.40am little more than eight hours after returning home, he went peacefully in surroundings he loved and, for that, I will always be thankful. His hospital stay, however, meant that he had not been seen by his GP for more than 14 days and when the doctor failed to make the agreed house call on the day of my dad's discharge, he left us in the position of having no one willing to certify the death.

We had followed what we believed to be the correct procedures. He'd been seen and discharged by his consultant (of many years) at the hospital hours earlier. He had been treated by nursing staff who administered a sedative mid-evening and by a community care team who made him comfortable and ready for the night. However, in the context of certifying an expected home death, no one was willing to take responsibility for the documentation; not the locum who attended within an hour of his passing, nor the GP who failed to come out to see my father on release from hospital.

The knock on effect of this non-visit was that we were advised not to touch my father and to leave him as he had died, on a hospital bed, in my mother's living room. It was a state of limbo which left us unable to engage an undertaker and confused, angry and upset about what was to happen next.

What followed was a deeply unpleasant experience of chasing and literally begging practice staff to attend to my dad and liaise with hospital staff to confirm that the death was indeed expected and he had been released in order that he could be made comfortable at home. Equally, the role of the registrar in this process was hurtful and insensitive and left us feeling that our actions and motives were being scrutinized.

It would wrong to be critical of approach of the registrar as there is a difficult job to do and when you remove the emotion and distress of that time, we just happened to be on the wrong side in the search for the facts. That said, the experience illustrates the bureaucratic loopholes that exist and the way they exacerbate the pain of being bereaved. Ensuring you are prepared can limit the chances of falling foul of red tape but it cannot mitigate the actions (or lack of action) of others. 

Tags: coroner home care palliative care dying at home end of life

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