He has been through more than most people can imagine – and so have we as a family.
Several times we have stood at the edge, where life hangs by a thin thread, and where the conversation about active euthanasia has been able to emerge as a possible way out.
Not because we wanted it, but because at certain moments it appears to be a “solution” to what are in fact very complex problems.
If you had asked me ten years ago, I would have said that assisted dying should be a human right.
But after gaining a deeper knowledge of the area through the debate, ethical advice and my own experiences as both relatives and working in the healthcare system, I have changed my opinion.
I understand why some see active euthanasia as a dignified end to a life full of suffering. But when you, as a relative of a person who does not have a voice, are faced with this possibility, it is a frightening thought.
My brother has often been exposed to system failure – system failure that has resulted in long hospitalizations where he has not received the care and attention he is entitled to because the system does not have the resources to handle him properly.
For example, there was an extended period where he was very sick, blurry and zombie-like. The on-call doctor was called several times, but there was nothing wrong with my brother. He was just disabled – and by definition weaker than others.
After pressure from the family, he was admitted to Filadelfia (Hospital for Epilepsy and acquired brain damage). Here they found that my brother weighed 42 kilos, but was given epilepsy medication after weighing 60 kilos. At the same time, he was no longer eating and needed a permanent feeding tube. Throughout, the process was characterized by a residential facility which had not introduced the necessary procedure in relation to medication management, a lack of communication about his food intake and doctors who, due to bias, drew wrong conclusions.
What decision would we as relatives have made if we had been presented with active euthanasia as an option by the doctor on call and our own doctor? It’s not because his life isn’t worth living, but because the system is failing.
And this is precisely where my biggest concern arises.
What happens when active euthanasia becomes an “easy” way out for a system pushed to breaking point?
I fear it could become a dangerous slippery slope where we who love those who cannot speak for themselves are pressured into making decisions we should never have made. Because how do you as relatives assess when enough is enough, when in reality the focus should be on improving care, treatment and support? It is not a solution to give up on human life because the system cannot keep up.
Active euthanasia can never be an easy decision, but I fear that in an overburdened health care system it may end up as an all too simple solution.
Instead, we must fight for more resources to be added to the health service and the disability area, so that the most vulnerable get the help and care they need and are entitled to. It requires political will, prioritization and perhaps a restructuring of our entire health system – but it is the only way forward if we are to avoid facing what may feel like an inevitable decision to end a life because others cannot bear the task.
Some might argue that legislation could protect us from the scenarios I fear. But based on experience from other countries that have introduced active euthanasia, we see that it can be difficult to create legislation that avoids unintended consequences.
We have seen similar challenges in other complex cases, e.g. when the government tried to legislate Koran burnings. Although intended to target very specific acts, it quickly became clear that the legislation created ambiguities and covered more situations than originally intended.
Similarly, I fear that an active euthanasia law, no matter how well-intentioned, could be open to misinterpretation or unintended application that affects vulnerable groups. Just as it is difficult to create a law that precisely distinguishes between free speech and abusive behavior, it is difficult to ensure that an active euthanasia law is only used in the intended situations and does not end up being used as an easy way out when the system fails.
My brother is a person, not a burden, and his life is precious. I am afraid that we as relatives risk being put in an impossible situation if active euthanasia unconsciously – e.g. because the doctor thinks that you are just sick and weak, because you are disabled – goes and becomes a solution to the weaknesses of the system. It is not dignity. It is a declaration of bankruptcy.
Instead, let’s focus on creating a system where no one is left behind – neither the sick, disabled nor their relatives. It requires resources, but it is an investment in human life. And that is the only right choice.
2024-09-29 16:46:09
#Sister #multidisabled #brother #person #burden #life #precious
