I’ve been sharing a few articles about how we pastor people through bereavement. In a previous article, I wrote about walking with a family through a coroner’s investigation and inquest process. In that article, I alluded to the fact that the time leading up to death may not be straight forward.
When it comes to Christian ethics and thinking about end of life, a lot of recent attention has been on euthanasia, or assisted dying. Should people have the right to take their own life when suffering from terminal illness, or even from significant chronic but nonterminal suffering? What happens when medics make decisions about withdrawal of treatment or switching off life support? Christian campaign groups and lawyers have got involved when such decisions have been contested, when the medics are in effect saying “there is nothing left for us to do and the best thing to do for the patient is to stop treating them,” but family and perhaps other experts are arguing that there is still hope.
A lot of the focus has been on the public campaigning element as there have been great concerns both about medics and scientists playing God and about the risk that changes to the law and to practice could put vulnerable people at risk. The focus therefore has been on parliament and the courts.
However, it is worth remembering that in every case where there are discussions about terminating treatment and in every case where someone seeks out euthanasia, there are families involved and they don’t just need lawyers and campaigners, they need pastoral care too.
Then there are the situations that never get onto the radar for legal and ethical reasons because that isn’t what families would want and really, that’s not what at is at stake in those cases. What do I mean by this? Well, I firmly believe in the sanctity of life because we are made in God’s image. God’s Word is clear that we must not kill and that includes euthanasia. However, I think that we can also attempt to play God by trying to prolong life for someone just as much as by believing we can terminate life when we wish.
But what that means is that in many cases, there are legitimate but difficult conversations that need to be had between medics, patients and their family. When should the medical team move from seeking to treat the condition in order to preserve life to palliative care where the focus is on ensuring that the patient is given as much comfort and dignity as possible? By the way, it is possible that someone might in effect be receiving palliative care for years, whilst continuing to enjoy an active life, because they have been diagnosed with a terminal, untreatable condition. Many people might even be aware that the person is receiving palliative care. There are pastoral implications here too.
Sometimes all of this goes better than at other times. One of the challenges of course is that as someone moves to actively dying and as their body deteriorates, it becomes harder as veins collapse to get the needles in and give nourishment or pain relief. Additionally, the person who is dying may be less able to communicate and this can be distressing for those around. Sometimes, good palliative care teams are able to guide families through what is happening and what may happen. And sometimes the dying process can be extremely peaceful and tender, as family gather to say their goodbyes. Because we are human and hospital teams are human too, it’s fair to say that we might expect there to be a mixture of positive things and not so good things.
Thinking back to my mum’s last stay in hospital, the positives were that we had almost two weeks to spend with her. We had time that a lot of people don’t get. Also, we were aware very early on that the situation was grave. Her surgeon and the ICU doctors advised us that mum was walking a tightrope in terms of whether or not she would recover. They also talked things through compassionately with mum. We were in turn able to talk to them about the hope in Christ that mum had and that we shared.
Still, when the moment came and we were advised how slim to non-existent mum’s chances of recovery were, it hit hard. The ICU consultant explained that mum had contracted a serious infection and that her lungs were not recovering. He said that at some point they needed to bring mum off of the mechanical ventilator. If mum did make it through then at best we were looking at another year in ICU, that mum would never make it home and that there was a high likelihood that she would succumb very quickly to another infection. In all likelihood though, his expectation was that when mum came off of the ventilator, her lungs would fail quickly; we might get a few hours with her, even a day or two, but he could not even guarantee that she wouldn’t slip away very quickly.
I remember us asking questions back to clarify that we had understood things. I remember us reminding the doctors again that mum had faith in Jesus, that she had no fear about her eternal future and that she would not expect heroics to keep her alive. In light of those facts, we asked “What do you think is best for mum?” The doctor responded “I think it is best that you get the rest of the family together, that we bring her off of the ventilator, and that we see what happens.”
We contacted the rest of the family. Sarah drove straight up from work without telling me. We had a beautiful few hours with Mum that evening. She was concerned to make sure that Sarah was okay, pleased that she was on her way. She wanted to know where my nephew’s wife was as she hadn’t been able to make the journey. She insisted on speaking to her on the phone. She told Sarah “look after Dave.” Sarah replied “I will but he’s hard work.” Mum gave a roll of the eyes as though to say she agreed. She was trying to say other things. I think she was trying to say “Going home now.”
Prior to mum coming round from sedation, the hospital had asked us if we wanted someone from the chaplaincy to come in to see us and mum. We didn’t want to pull in someone who didn’t know mum and where we would not even know the state of their faith. However, it did feel right to have someone come and pray with us. Mum and dad’s own pastor was himself seriously ill and unable to come into the hospital but we were able to contact the recently retired pastor of the church where mum and dad had spent many years. He had grown up at the church and mum would have prayed for him many times, so it was lovely to see him come in and pray with her towards the end.
In the night, the nursing team removed a lot of the lines and monitors. We had to leave the room whilst this happened and that was unsettling. Mum was with us but a lot less conscious through the next day. A member of the palliative team popped in and visited her. They advised that it might be a short time or she could be with us for a few days more. As it happened, mum went to be with her Lord and Saviour in the early hours of the next morning.
On reflection, I think there were two things that made the situation difficult. First, the surgeon had insisted through the time that the operation was a success. Now, I appreciate that in clinical, technical terms, it was. However, the reality was that it had not delivered the intended outcome of better quality of life, or even simple preservation of life. So, it does not seem right to me to refer to it as a success. Medics (and I’m sure this applies across to other fields) need to be careful about the language they use and the signals they send.
Secondly, the communication around decisions towards the end could have been better. I don’t think anyone overtly used words like “palliative care” until the palliative nurse turned up. It was as though there was a shared, unspoken understanding of what was happening but it was never fully verbalised. Furthermore, you get the sense that they are putting the onus on you as the family to make decisions. This feels like a heavy weight of responsibility and to be honest, I don’t think that there really were any choices to make.
How can we pastorally support people at this stage? Well, first of all, I think it is helpful to, without sensationalism, talk to people in advance about what to expect when they come to this point. Secondly, we appreciated that people from our churches were praying for us and sending messages of support even when they could not be present. Thirdly, I think that as doctors talked about “what ifs” and possibilities, as they put decisions in front of us, the burden felt large and we felt very lonely, even as a family together. In many cases, there won’t even necessarily be a family of believers to support one another. Having someone else to talk to, to pray with, to get advice from, to help slow things down, can be significant. Fourthly, it really means something when your pastor comes in to sit and pray with you at the bedside.
Fifth, this article is headed, along with the previous one “pastoring the grieving” and yet a lot of it concerns events prior to death. It is helpful to remember that in many cases the grieving process starts before the actual bereavement. Denial, anger, guilt, negotiation and gradual.acceptance along with nights of tears may all be present. Certainly much of that was my experience in the two weeks between mum going into hospital and her going home to be with her Lord and Saviour. In some cases it is a long goodbye. Part of our pastoral care might be to help then to both grieve before death and to see the goodness from God in the situation, to be between joy and grief, tracing the rainbow through the rain.
Finally, we need to have people who will keep pointing us to the hope that we have. Part of that is about being encouraged not just to survive through the moment but to be holy, to glorify God, to be witnesses to the hope that we have. In the ICU we had the opportunity to share time with other families visiting loved ones and in one case to pray with them.
I mentioned previously that there can be an element of PTSD after a challenging bereavement. So, it is a good thing to check in with the bereaved family not just in the weeks after the death but in the coming months to see how they are doing and to talk gently with them about where they may be struggling with denial, anger, blame, guilt.
Faithroots 