This year has seen two very sad high profile medical cases relating to the treatment of seriously ill children, Charlie Garde and Alfie Evans. In the second case, the Christian Legal Centre got involved. As they explain here, they did so in order to ensure that a family were supported and had advocates speaking for them.
The cases have polarised public opinion. On the extremes of the debate are
- Those who see the medical profession and judiciary as the experts acting compassionately in the interests of the children against an irrational mob stirred up by the media and zealots.
- Those who see this as being about a wicked state dictating to a family, putting money first and rather than acting to preserve life, seeking to take life.
People have been quick to read these cases in line with their own particular agendas. For example, those in the US who take a strong position against state provision of health and welfare have used this case as an example of why state provided health care is not just wrong but evil. I’ve seen articles and tweets talking about “death panels.”
These life and death decisions matter pastorally. Personally, and pastorally I’ve sat at bedsides with older people as the end approaches. I’ve seen people looked after well and been in rooms where there is such a peace and calm. Suffering has been present but there’s been a sense of physical care for the patient. I’ve also witnessed distressing scenes as it seemed that very little has been done to minimise suffering.
We’ve also had friends who have been faced with the challenges of pre-mature birth and significant health concerns for their little ones.
Life is fragile, suffering is real and so a Christian perspective on these things matters. Here are a few reflections on the challenges of these cases.
- Truth Matters
There is truth in these cases. This means that although I’ve talked about “extremes” above that just because something is the extreme position does not mean that it is the wrong position. We naturally assume that “the middle ground” is the right and the safest place to be but that is not always the case.
However, truth means that we should not just jump to an assumption, especially based on stereotypes. Truth means that we should be careful and fair in our assessment and description of others.
As I mentioned above, I’ve seen our health service at its best and worst. I’ve received treatment myself, effective, compassionate and on time. I’ve also seen people wait, not get the right diagnosis and be treated rudely.
Doctors are finite human beings. This means that we should not romanticise them. Many are in the profession out of a great sense of compassion and care but no doubt like any profession there will be those for whom it is just a job or a profession that primarily carries social status. Doctor and nurses are often hard working, they persevere, they put up with all sorts. But Doctors are not perfect. They make mistakes, come to wrong decisions. They are fallible. They can get the diagnosis wrong -and there are notable cases around brain injury. Not only that, if they do not have the Gospel, then their decisions about treatment and life and death are shaped by their world view and as we keep saying “What you believe affects how you live.” This means that even when the diagnosis and prognosis is correct, their advice about treatment may be wrong.
Lawyers and judges are finite and fallible human beings. Our primary engagement with the legal system has been to do with immigration cases. We’ve also seen people have to go to court over family matters. Lawyers disagree, that’s why court cases happen. Judges disagree and get things wrong, that’s why we have an appeal system. The appeal process simply means that other judges get to re-consider the matter. Their remit is to ensure that the law has been correctly interpreted. So, even though the legal process has been exhausted, this does not mean that the right decision has been reached. It simply means that those who have been involved in the process have done their best. Judges will be influenced by their world view as they come to decisions. They are also influenced by the worldview that shapes our law and legal system. The legal system, judges and lawyers are not infallible.
This is a central point -and one made strongly in the past by my friend Duncan Forbes. We are faced with institutions that are implicitly biased against the poor and vulnerable in our society. If you have money and status, if you can make trouble for the decision makers or if you can “take your business else-where” then you have an advantage over those who don’t and can’t.
But nor are lawyers, judges and doctors demons. These cases are not about “death panels.” Those involved in treatment are often deeply affected emotionally and as I’ve emphasised above have a deep concern for those involved.
Similarly, parents too are fallible and frail. Families disagree. Children of elderly relatives struggle with all sorts of emotions. I have often been asked “I find myself praying that God will take them quickly so they are not in any more suffering … does that make me a bad-person.” Relatives cling on with hope because they love, because death is an enemy and so feels like defeat. We fear bereavement. Parents can get decisions wrong too. So often my advice to those struggling with family decisions is “Just go in there and be a dad/mum/son/daughter/brother/sister. You are acting in love, that’s all you can do.” A little bit of me thinks that what this incredibly young people needed most of all was some people to get around them, to speak for them and to support them, even if their decision was wrong. They needed advocates and comforters, they needed people to bear their burdens (a good Christian thing to do)
2. There is a time for everything
Ecclesiastes 3: 1-8 says:
“For everything there is a season,
a time for every activity under heaven.
2 A time to be born and a time to die.
A time to plant and a time to harvest.
3 A time to kill and a time to heal.
A time to tear down and a time to build up.
4 A time to cry and a time to laugh.
A time to grieve and a time to dance.
5 A time to scatter stones and a time to gather stones.
A time to embrace and a time to turn away.
6 A time to search and a time to quit searching.
A time to keep and a time to throw away.
7 A time to tear and a time to mend.
A time to be quiet and a time to speak.
8 A time to love and a time to hate.
A time for war and a time for peace.”
Pastorally as we face such cases (and my primary concern here is to think about how we as a church would face a similar situation if it happened in our community), there must be a strong sense of God’s sovereignty. This has to be the thing we cling onto. This means everything happens in his time and in his way.
This does not mean that we are fatalists. That’s not the sense of the rest of Ecclesiastes or the bible. When people share their asylum situation with us, we say right from the off “God’s plan and purpose maybe for you to return and to face the persecution. We cannot guarantee that the case will work out but we can guarantee that God is sovereign in this.” However, we don’t then tell them to give up on their case. We keep working, speaking, challenging, fighting because whilst we know that God is wisest, we can only work with the wisdom we have here.
This means that because we don’t have God’s perspective on the whole picture that we don’t necessarily know what the right outcome is. To be honest, sitting here today I don’t know enough about the detail of the case. I don’t know if the right thing to do was to arrange for a baby to be transferred to Italy and whether switching off life support systems were right or wrong. I do think that insisting that he could not leave the hospital, that the family could not seek other alternatives, especially when provided by other health care professionals and that for a family to fight for the right for their loved one to at least go home to die is wrong. I do think that cases where it isn’t about life support being switched off when that’s the only thing keeping someone alive but the withdrawal of nutrition then that is horrendous.
What is more, the point that our time is in God’s hands because we are made in his image re-enforces the point that it is not our place, or the place of hospitals or courts to decide that a life is not worth living.
3. Anger is a legitimate response to suffering and death.
As I said above, death is an enemy. Death is the result of sin. When we see a family’s intense suffering and grief then part of our response should be anger. We should be angry when we see pain and suffering caused and exacerbated by bureaucracy. We should be angrier at the way that sin has caused suffering. Death was not meant to be part of the picture. Indeed, it is only a Gospel worldview that justifies this natural human response. We are not just clumps of genes, we are not mere animals, it is not just the way things are meant to be.
3. There is a hope
Death does not have the final word. My prayer for these families is that when the media circus has disbanded, when the dust from court cases has settled that they will continue to find that there is a church family around them for the long term. More so, I hope that through the witness of that church family, they will discover that there is eternal and lasting hope in Christ and the Gospel that will hold them through the dark days ahead.
I hope that whether such a case happens in our context or in the equivalent cases of suffering and grief that the same will be true here.
 See http://duncanf.blogspot.co.uk/2018/04/if-youre-gonna-write-on-alfie-evans-pls.html and http://duncanf.blogspot.co.uk/2017/07/charlie-gard-and-implicit-bias.html apologies to Duncan as I haven’t managed to engage with every one of his points in his article as much as he might prefer but hopefully I’ve engaged a little.
 John 11:33.