This is our truth, tell us yours
Anyone who has observed the demonisation of local government over the past 15 years is aware that it is the drip feed of negative stories which leads to a passive acceptance of underfunding by central government. That similar tactics are being used against the NHS is no surprise, but should worry all who want a health service free for all at the point of need. One of the ways that a negative impression of the NHS is propagated is through shock horror stories like this one about end of life care.
We have been here before, with the liverpool care pathway, a medical model designed to make going into the light gentler for those who were dying. It was removed because families, or rather a few families promoted by the right wing press objected to it. According to this latest story in a 5th of cases of a DNR being applied families are not informed. There is a very brief discussion of why this might be buried under the headline.
Professor Ahmedzai, chairman of the audit, said in many cases there was no relative available to discuss the decision, or families could not be contacted in time.
As a queer person my first thought is of all those families who have rejected their LGBTQ children, who have refused to allow partners into the house, who have been family in name only. There can be many reasons someone’s family is not contactable, or listed neatly as next of kin, and many of those reasons are painful. Whilst Carter and I do not have the type of relationship where we would be listed as each others next of kin (and we are both in the fortunate position where we do have others who care about us who can go in that box) it is the experience of many poly people that they are rejected by family. The fact some relationships are now recognised by law does not mean that all relationships which matter to a dying person will be treated equally.
It doesn’t even have to be a sexual, or romantic relationship, I have been reading a lot recently of relationship anarchy. It speaks to me on a fundamental level. The primacy we give to people because of the accident of birth, or because they perform a medieval pair bonding ritual makes no sense to me. Of course my preference for not prioritising some forms of love over others is not how the majority see the world, but the fact that not everyone lives conventional heteronormative lives does matter when we look at things such as end of life care. It matters because for so long queer partners were locked out of the discussion, watching queerphobes making decisions about the final moments of their loved one. The queer community knows the pain that causes, and needs to stand up for those in other non traditional relationships who might be excluded.
The cult of the family around end of life care is difficult to challenge. Many good decent people do not behave rationally around grief and death. There can be guilt, and looking for someone to blame. We do death very badly in this country, and there seems to be a belief that if a doctor is not prolonging life at all cost they are some how in the wrong. These voices are the loudest when it comes to discussing dying, and it is next to impossible to say that perhaps not all families are good, selfless or have the interests of the dying patient at heart. It often seems that people who would benefit from grief counselling are being used to show that the NHS is somehow failing, because we quite naturally feel we cannot criticise grieving people.
I do not want to say the NHS has never made mistakes, like any large organisation struggling with resources corners can be cut, or worse. However simply saying that the first priority in end of life care must be the feelings of those who you share a genetic link with ignores the fact that lives are more complicated than that. I do not think this is the last story of this nature we will see. There is a push to privatise the NHS and any weapon will be used to create a belief in the mind of the public that the NHS is failing. End of life care is an easy headline grabbing way, since our cultural aversion to thinking about death means we read the headline, and pass quickly on.
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