JENNIFER: (a medical doctor): This is a bioethics discussion. In a meeting today we were talking about what might be best practice re very prem babies – does one treat actively or not? In general at 23 weeks a baby IS treated actively and these days survival is good, but at 22 weeks it is much harder to know what is best. There are survivors but usually at around 22+5 or 6 days. I do not think there are any survivors under 22 weeks gestation. The physiology is just too different. I wondered if anyone has any thoughts: do you think that Catholics might be more willing to try anything, or would they sooner think that active care is not in the child’s best interests?
SUSAN: I think there is a great grace in accepting that nothing can be done and allowing someone to die peacefully.
PAULA: Surviving at 22 weeks may not be a great achievement if you are extremely disabled.
JENNIFER: Well of course we don’t necessarily value lives differently depending on any characteristic. Interestingly there are studies on quality of life in children with severe disability and it is not always that different to those without disability. Of course it’s a complex issue.
ESTHER: I have walked this walk … Toughest decision I ever made … but in my experience, some were willing (still are) to go to ANY extent to prolong a life, regardless of the outcome, and the percentages are not good.
BARBARA: It’s a hard one, and I know nothing of medicine and nursing. All I know of are the stories of babies who survive despite the odds. Catholic, Christian ethics need to balance care, compassion, possibility and reality, I suppose.
JENNIFER: Yes I think that’s it. It’s really hard to do in the real world though – and often there’s no time to think before embarking on active management. It’s so easy to make a decision that in the cold light of day may not have been the best one – but once started there’s no going back.
FRANCES: I don’t think Catholics would be any more or less likely to try to save their baby with active medical care than parents from other religions. I would be concerned if Catholic parents feel their faith requires them to continue medical treatment at all costs. As Catholics, the only medical care we are required to receive is artificial hydration and nutrition. Everything else is considered extraordinary. I don’t know how common that information is.
JENNIFER: I see it’s more a personal thing. I know some families find giving up when treatment is futile too difficult for a long time.
LINDA: I don’t know that Catholics would be any different, but the earliest surviving preemie I’m aware of was born at 21 weeks and 5 days in Ottawa. So maybe an effort should be made? It’s an interesting question.
JENNIFER: That really is early – makes it hard not to try – though there are other factors like the circumstances of delivery (if it’s outside a delivery unit the prognosis is much worse), presence or absence of infection, presence of intrauterine problems, that make a big difference in outcome etc.
CHRISTINE: Depends on the kind of Catholic. Very traditional or more open. Very similar to questions at the other end of life.
ELIZABETH: Those questions should be exactly the same, regardless of the age of the patient. I understand that “he lived a full life” of the patient who is 70+ years old vs. the “but life was just beginning” of the pre–term baby makes the mourning of that life very different. But the questions should be exactly the same, shouldn’t they, if we believe both patients are completely human – when to stop treatment and enter into hospice–type care?
CARLA: I am pretty uninformed on the ethics of this, but from a laywoman’s perspective, I think hospitals should “try anything” if at all possible, and certainly if there are loving parents who want them to. If I’d ever got that far with a pregnancy I strongly suspect I would have thought it would be amazing if the child could live even a few days in an incubator, even if very disabled, so we could contemplate the miracle of her or his life even a few days. You have to believe each life is valuable in and of itself, I suppose, to think it’s worth the money, but I do.
JULIE: I was recently at a conference where a specialist in neonatal palliative care spoke, and said that keeping the baby alive even for a short time is worthwhile so that the parents can recognise, hold, name and love their baby, and this makes their mourning “real”: mourning the real death of a human being with whom they had a real, if brief, relationship. Even a very prem baby is still human, still part of a web of relationships, still valuable.
JENNIFER: Indeed. I think the problem is always when to transfer to palliative care from active care – and of course many families find this difficult.
CARLA: Jennifer, the clinicians will ultimately be the best judge of that. Presumably if a very disabled or ill child is to survive, it would need specialist operations, and without that there’s no realistic chance of success. A parallel is children with congenital heart issues. I have a friend whose son is now a teenager who was born with half a heart. Ten, or perhaps even five years previously he would have been given palliative care and that would have been that, but there was a new technique available for rejoining a heart back to itself, he was sent for specialist surgery and survived. He is a lovely lad and lives a full life.
JENNIFER: Congenital heart disease has very clear protocols for palliation v active care. The baby’s weight is really important and we know there is no chance of survival with some of the anomalies below a certain weight. It is much harder to judge in extreme prematurity. The complications may well lead to a child with complex community needs – schooling needs, etc. But of course these are the children who survive. We would not see this as a bad outcome necessarily. I think knowing not to actively treat because extreme prem renders things hopeless from the start is not clear cut and an impossible decision.
KATE: “Does one treat actively or not?” Never lose sight of the fact that while there might be some characteristics in common, in these sad cases each one is unique. There are no simplistic yes/no, right/wrong answers. I’m speaking as the grandmother of a happy, healthy child who was born 9 weeks prem and a tiny premature granddaughter who didn’t make it.
SHARON: This is such an interesting and complex discussion. I wonder if part of the wisdom that Christianity offers us in situations like this is the offer of mercy and forgiveness when we face impossible decisions. In a perfect world, parents who choose to save the life of a seriously disabled and dependent child would have access to a range of support services and economic and social care, but in the increasingly ruthless realities of our modern societies, such families are often left to cope with little or no help, and extended family networks aren’t always available either. I can’t imagine what it feels like to weigh up so many conflicting demands and emotions.
JUDITH: I think we should focus not so much on survival on any cost, and more on palliative care, which means recognizing and honoring that tiny life even if it has to be cut short. I am uncomfortable with the ableism idea that there’s no point in keeping alive a person who will be disabled. But l also think that at a point “trying anything” can cause not only financial crisis but also additional stress as well as pain for the baby.
JENNIFER: Indeed – you are correct in all of this, and of course we doctors are well aware of this, but deciding which course of action to take can be really hard in some situations.
MARTHA: There was a short meditation entitled “Living Faithfully in an Ambiguous World” on the Henri Nouwen Society website. It seems to me to sum up the difficulties with really difficult and painful decisions like this, particularly when time is often of the essence.
DEBORAH: I don’t believe we can – or SHOULD! – make moral decisions “now and always” or objectively. Should we treat actively? A friend of mine is a pulmonary neonatologist – a doctor who treats, primarily, premie babies. Some years back when I was visiting she showed me a baby who was born at less than 4 full months. He was “alive” on a respirator, he would “survive” – but my friend pointed out that he would be mentally challenged, need lifelong medical care, and was born to a single mom with little money and little education. A mom who wasn’t likely to *be able to* grasp what to do for the child, how to care for him properly, or even bring him for all the doctor visits he’d need. That’s a whole other context than, say, the same circumstances of birth for a married woman with excellent education, living in affluence, with a solid support system around her. Situation Ethics? YOU BET! Ethics MUST be situational, as it is the endeavor of human beings, who ALWAYS live within a context, and an ever–changing context at that!
JULIE: It must depend on circumstances. Should a child be kept alive artificially when there is no real hope of any quality of life or when the baby is likely to be in pain? When I say “quality of life” I’m not really thinking of a fully independent life being the only one. I work with profoundly disabled young adults and they DO have quality of life including enjoyment, but it isn’t easy for them, their families, medics or any of us.
JENNIFER: It is so true that “quality of life” CANNOT be assessed from the outside. This is one of the most important rules of medical ethics, Though as others have said, financial and educational support and much else may be required for many needs if a child has complex needs. Organising and providing this support is an important branch of paediatrics in U.K. I am really primarily thinking of something other than disability. I am thinking of embarking on active treatment that ultimately turns out to be futile. It can be a really difficult situation.
DEBORAH: They will take that stand with an opportunity to assess the parent(s)’s ability to give the care needed. They’re careful, but they aren’t foolish.
TRISH: I don’t think you can generalise about Catholic feeling, although undoubtedly there will be zealots wanting to prolong life so the baby can be politicised for the pro–life cause.
There’s a line between doing everything you can to save the baby and not imposing treatment which is going to be futile, burdensome, traumatic AND painful. Is it ethical to treat when the best case scenario is that the child will be deaf, dumb, blind AND mentally impaired and never able to enjoy any sort of quality of life? Surely the humane thing in some situations is palliative care or keeping the baby alive for a short period so the parents can say goodbye.
I think as Christine said, this is also relevant to end of life care. There are too many people (who perhaps feel guilty about not visiting enough etc.) who put their elderly relatives through torture to unnaturally prolong their lives when they should be able to pass away peacefully.
CHRISTINE: Yes. We knew people in this situation. Son and father who were not very attentive or kind before repeatedly revived her. She was on treatment which she found very painful and difficult. She asked them not to revive and finally they let her go. That was not showing love.
LUCY: This is so pertinent to me both in the past and in the very real present. Sitting bedside an 85 year old friend in CCU, recovering from stroke and brain bleed, I heard her son give instructions to do everything possible to keep her alive if she stops breathing, in order for the ill woman’s stepson to arrive (someone who has not visited her in years though he comes to see his Mom nearby several times a year). This is someone thinking of themselves; not of the best thing for the patient. This same stepson (then a young boy) begged me not to remove life support from my daughter when she was brain dead, as his friend in a seance said she would revive from the coma she was in. I am sorry but am glad I took an ethics course in advance of having to make a very difficult decision. But why is it taking over a week for this man to come say goodbye? Sorry, but I’m praying this elderly woman continues to breathe so her body does not have to endure further trauma.
ELIZABETH: Heartrending. I wonder though, if the youngest son doesn’t want to let go himself and is using the step–son’s delayed arrival as an excuse to hang on to his mother a bit longer. Prayers for peace and comfort to you.
CLAIRE: Good to see we are discussing babies and older people who are very ill; this is such an important subject. About premature babies, I think it is a very complex area and ages for survival and medical advances continue to be pushed back all the time. Two points from my experience: our third baby went to full term and then was dying at 9 days old. As her mother, knowing that her brain and all her other organs had been affected by the acute virus that was killing her, I would have done anything to keep her alive. She died. We later had a fourth healthy baby who is now in his thirties. I can say now that I probably wouldn’t have coped well with a brain damaged child with the other stuff in my life that has happened since, BUT I think that only I as her mother could say that. The virus killed her so there were no discussions about whether to keep her alive or not and I think if we had I was in no fit state to have said “stop treating her” whether I was a Catholic or not. It would have added to the unbearableness of it all.
The other point I wanted to make: as a young social worker before having my own children (so this was over 40 years ago): I was working with a family where a young girl was blind. She was premature and had been given too much oxygen in her incubator. Later treatment changed so this no longer happens. So with babies the frontier for survival and good quality of life are being pushed back all the time.
CHRISTINE: There are so many variables. A little fact in any one direction can change the whole scenario. Time is a big factor I think. Five minutes after birth I might say one thing and something different after two weeks of seeing the baby suffering. I don’t know. I’ve never had to choose. But I feel as though my off the cuff, right now reaction would always be save, But that I might feel different with more time to consider and see the problems more clearly. Does anyone else think this?
JENNIFER: Yes. I’ll just say something about what happens from the doctors’ point of view. I am not a neonatologist, but I do work with them all the time. Basically doctors can do the following:
- Make a decision to treat and when that is “futile” (by which we mean going to end inevitably in death), we can change care pathway to palliative. Usually futility is signalled by intractable cardio or respiratory failure – sometimes by having no kidney or liver function.
- Doctors or no one else can assess quality of life and the first rule of ethics is that one NEVER does. The possibility that there may be disability NEVER enters any equations nor should it. A major part of paediatric care is about caring for children with complex needs following scenarios like NICU where necessary.
I only say this because I am wondering if some people wonder if we can stop treating children because they might have a disability? This is not and could never be true. Palliative care is about managing the end of life not hastening it.
RACHEL: I worked as an ICU nurse for nearly thirty years and during that time also had a child with what seemed to be terminal cancer. I saw doctors continue to treat no matter what, leading to cruel end of life scenarios, and doctors who eased up on treatment when a bit more aggressive treatment was warranted. It is a very fine line. At one point we took our child home and decided there would be no more treatment. That was 25 years ago. We are busy planning her wedding right now.
A friend of mine died of complications following surgery and cancer. Her very pro–life husband would not allow doctors to stop aggressive treatment even after it was apparent that she could not recover. He demanded interventions that were simply tortuous. When she finally passed away, the nursing staff needed counselling. What I have learned: there are worse things than death, and we should never allow those things to be imposed on other human beings.Top of Form
FELICITY: A few thoughts. In my work as a family therapist in a NICU, what I believe is most important is how information is given to the family when babies are born on the edge of viability and at early gestational ages. It is extremely difficult for parents to make a decision based on “just the facts”. As Atule Guwande writes in Being Mortal, patients (and in the NICU – families) need the medical information along with being able to share what their hopes and dreams are for their infant. By eliciting this information, the physician and team can assist and guide the family into making the right decision for them. Easier said than done, however. And in our NICU we stress to the families that whatever decision they make, whether to “redirect care” or “do everything possible” it is the right decision for their infant. While staff do not always agree with the family’s decision, it is not ours to make.
KATE: Revisiting this, I’m wondering if it helps or hinders to remember that we’re discussing a First World problem, that in the Third World and in the case of some in first world countries (e.g. the working poor etc. in the US), there is no access to the sorts of treatment we’re discussing. The very frail at both ends of life do die, there simply are no technological efforts that can or will be made for (on?) them.
Another issue. The Church teaches we must provide nutrition and hydration. Again in the First World, death is highly medicalised and hospitalised. Unless death is sudden, very few people die at home. So we don’t see that it can be a quite normal part of the dying process for people to refuse food and drink in their dying days. My personal view is that in some cases artificial nutrition and hydration are overly intrusive means that stop a person dying when really their allotted days have run out. Thoughts?
ELIZABETH: Normal dying process and the requirement for artificial feeding/hydration: I had some of this conversation with my mother right before she died. Cancer – and it was eating at her digestive tract. Feeding her wasn’t going to do much good for her and we’d been told she was terminal. We both found it kind of funny that the hierarchy demands we undergo artificial feeding/hydration to prolong lives but forbids artificial birth control as being immoral. I know Mom wanted to stop eating normally and just let her diabetes take its course. She mentioned to me that dying of low blood sugar seemed like a peaceful passing. I found I couldn’t quite go that far. I would not have demanded IV needles and such, but just trying to keep enough sustenance in her that her blood sugar wasn’t dangerously low [I found it at ~50 one morning] did seem to me to be within reason. And no, I wasn’t ready to let her go. Still am not. Nor am I anything like medically trained.
TRISH: The UK hierarchy doesn’t demand artificial feeding and hydration. Catholic doctors and ethicists who approved the now defunct Liverpool Care Pathway, did so because they knew that imposing food can be burdensome when you are dying. The key seems to be allow people to be hydrated, sucking on sponges or ice cubes to moisten lips and taking tiny sips, rather than actively attempting to deny or impose food or hydration on them.
There are lots of anecdotes of people who are dying, rallying around and having a hearty meal.
My grandmother caught us by surprise. On the Monday my mother rang me to say that she was concerned that she may be dying (grandmother was old, not terminally ill) because she had an infection, had been sleeping all day and was barely conscious.
She rang me on the Tuesday to say that her concern was misplaced, we didn’t need to rush to visit, grandma had rallied and was eating heartily. Mum also felt bad because she had rung the nursing home that grandma had been admitted to a year previously and the home had said that she had recovered and was in good spirits and eating well. Mum planned to go and visit the next day.
5.30am on Wednesday morning. Grandmother wakes up and asks someone to bring her a cup of coffee. They go and fetch it for her, come back to find she’s passed away.
She’d never got to the point of needing the LCP or it ever being suggested, though we did all agree that should she pass away no attempt at resuscitation should be made. But she was 99!
DEBORAH: Back in 1948 – now a closely–guarded “secret” – the otherwise conservative Pius XII addressed a group of Italian doctors, dealing with patients suffering from terminal wounds and illnesses from World War II. He told them that Catholics are required to take *necessary* measures for medical care, but are NOT required to take *extraordinary* measures: these he defined as measures causing extraordinary pain or hardship (including emotional and financial!!) to the patient, AND/OR the patient’s family. FEW people are aware of this document!!
RACHEL: I became a nurse in the midst of the “code blue” origins. At the time it almost became a liturgical type ritual in ICU’s that were popping up in larger hospitals and then smaller hospitals. To be honest I think it was kind of rare to feed critically ill people for the first week or so … we just sort of waited for the next dying event. Angioplasties began saving people who would certainly have died of heart disease quickly in the early 80’s. Trauma surgeries and procedures became fine tuned with surgeons returning from Viet Nam. WWII and the Korean war had produced many procedures to save people who would have died in the past. Cancer treatments became protocols that saved many lives, but took others to middle of profound suffering. So much has changed since 1948, but people still die and will die and to prevent it is sometimes more sinful than letting it happen. God is in the midst of all the suffering and that includes the suffering of the family, the patient, the caregivers. We will work out these terrible conundrums only by recognizing the beloved human state of all concerned.
TRISH: Reflecting further, I think Catholics would be in broad agreement that doctors shouldn’t be looking to kill either neonates or the elderly, or that we should be rushing to administer palliative care, if there is a good chance that the baby could live, even if they were to have a mild disability.
But it’s always a prudential judgement when palliative care may be the best option. I don’t think people genuinely realise how traumatic and burdensome just something like inserting a line can be for a tiny baby.
CHRISTINE: The problem is that people want to have a one size fits all decision. That is not possible as many have noted. You cannot make laws about some things, they can only be adjudicated one by one.