Complaint about Rumer’s care, part 5

Pregnancy 2

• PREGNANCY 2: Failure to consider all care management options

  • In summary
  • We would like

Concerns about the care of Rumer Gomez

Pregnancy 2: Failure to consider all care management options

2.Failure to consider all care management options

From soon after diagnosis, we felt there was an unwritten policy about how babies with trisomy 18 should be managed, which seemed to be that there should be no invasive interventions, and no treatment given for the purpose of prolonging their lives. This unofficial policy precluded open discussion about any alternative approaches. Other options were never mentioned by medical staff, and when we brought them up, they were usually dismissed or deflected. Thus we felt strongly pushed down a palliative care only pathway, and that we were not supported in making informed choices for our daughter’s care.

Complaint about Rumer’s care, part 4

Pregnancy 1 & Appendices 36

• PREGNANCY 1: Delays in care-planning

  • In summary
  • We would like
• APPENDIX 3: [George Donnachie] emailRequest to delay multidisciplinary meeting (03 Jul 2015)
• APPENDIX 4: Our emailProfessionals to see (11 Jun 2015)
• APPENDIX 5: [Ida Leigh] emailInitial neonatal care plan (14 Jul 2015)

  • Term birth
  • Preterm birth
  • Further action planned
• APPENDIX 6: [Khushi Holloway] emailProvisional obstetic/midwifery care plan (29 Jul 2015)

Concerns about the care of Rumer Gomez

Pregnancy 1: Delays in care-planning

Pregnancy

1.Delays in care-planning

This was a common theme throughout the antenatal period, in which we found significant difficulties in accessing some specialisms, notably NeonatologyNeonatologySee Neonatal Unit Who’s Who entry. Additionally, some professionals were keen to delay care-planning discussions until later in the pregnancy, despite this being against our clearly expressed wishes and having a potentially negative impact on Rumer’s care.

Rumer's Story, part 20

Neonatal & Palliative Care meeting: II

Thursday 2nd July 2015
27 weeks pregnant

Keen to bring the discussion back to treatment options, Chris proceeded to describe our understanding of the pregnancy risks and how we wanted to mitigate them (eg. close monitoring, c-section). He wanted to show our thinking about how to manage the obstetric problems, since that was what we were most familiar with at this point, thinking that that would give Ida an idea of the general approach we wanted to take in order to set the tone for the discussion about postnatal management. He also wanted to illustrate that we were realistic about the high rates of stillbirth and neonatal death; that we were going into this with our eyes open.

Rumer's Story, part 19

Neonatal & Palliative Care meeting: I

Thursday 2nd July 2015
27 weeks pregnant

So we got back to the now very busy Fetal Medicine Unit (FMU) waiting room around 12:20 and waited. And waited, and waited. At 1pm, half an hour after the appointment should have begun, we spotted the neonatal consultant, Ida Leigh, chatting to George Donnachie; he ushered her into his room in his usual charming manner. And we waited; we remarked to each other that had we known it would be this long, we'd have had some lunch – by this time we were very hungry after our early start.

Rumer's Story, part 18

Palliative care is not more important!

Wednesday 1st to Thursday 2nd July 2015
26 to 27 weeks pregnant

So on Wednesday, we were at home together for most of the day. We called the Fetal Medicine Unit (FMU) and left a message for Elysia Crouch, our link midwife there, to chase up the neonatology appointment. After the cardiology appointment the previous day, we were keen to get on with things and find out where we stood with the hospital. We knew that what we were considering – active treatment – was not the norm in the UK, and after some initial enquiries around the trisomy groups, we hadn't heard of any babies with trisomy 18 who had received it. So we were apprehensive about the appointment, and anticipated at least some initial scepticism.

Palliative care vs active treatment

Stereotypes and Realities

Fundamentally, when you have a baby with T18, you are told you have two options to choose from* (of course, you may not in fact be offered one of these choices):

• Palliative care (also referred to as 'comfort care')
• Active treatment (also referred to as 'full treatment')

However, what you are told, or understand, about these choices is likely to be very different from the realities.

To a hospital somewhere in the UK

I wrote this letter when Rumer was 10 weeks old and in PICU, after an online friend shared her letter from a major UK hospital denying treatment for her unborn son with trisomy 18. I didn't plan to send it. The child was eventually given full treatment by another UK hospital. Names have been changed to protect the innocent (and not so innocent).

Comfort care or torture care?

When palliative care goes wrong

I admit that I don't think 'palliative care only' should be the routine way of managing all infants with trisomy 18. I think there are ethical questions to answer about this, especially when a child with T18 presents with few additional medical problems.

However, I accept that this may well be appropriate for some children with T18 who have complex presentations, and I feel that, as we don't have strong evidence for or against treatment for other children, in the end, parental choice should be deferred to, and some parents will opt for a palliative approach.

Research Friday: Does intervention prolong life?

Kosho T & Carey J (2016)

For our third Research Friday post, we thought we'd look at a recent paper that addresses a question that many physicians and parents often ask, and over which even more frequently disagree: does medical intervention actually improve survival in children with trisomy 18 (or trisomy 13)?

Palliative care: calling a spade a spade

It's okay to choose palliative care. There, I've said it. It is okay to choose not to pursue full interventions for your child with trisomy. It's okay to have limits. Your limits may not be my limits; I even think there are ethical questions about failing to offer some interventions, but I also think that parents generally should have the right to act in whatever they perceive to be their child's best interests, and when there are no clear-cut, evidence-based answers as to what is in a child's best interests, I think parental choice should be deferred to. So it is okay to choose palliative care.

Active treatment or palliative care?

Choosing an approach in trisomy 18

When your baby is first diagnosed with trisomy 18, you may well ask, "What can be done?" And you may get an answer from the medical team of, "Nothing." If it is a postnatal diagnosis you may assume they will continue to offer basic medical care, such as feeding and breathing support. If it is an antenatal diagnosis you may be told your baby will be "incompatible with life", and "We will keep baby comfortable."

However, this is not your only option. Fundamentally, when your child is diagnosed with trisomy 18, you have two choices: