7 March 2018

Complaint about Rumer’s care, part 5

Pregnancy 2

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.

  1. When trying to arrange our first appointment with NeonatologyNeonatologySee Neonatal Unit, we were instead offered an appointment with Palliative CarePalliative CareSee Paediatric Palliative Care Team. When we insisted that we wanted an appointment with Neonatology, the FMUFMUSee Fetal Medicine Unit midwife who was responsible for arranging the appointments replied, Palliative Care is much more important. This turned out to be illustrative of the attitude across most of the TrustTrustSee Central London Hospital NHS Foundation Trust (pseudonym), and was both inappropriate and offensive to a family with a new diagnosis of trisomy 18 which had not yet had the opportunity to decide on an approach to management.
  2. In the end, our first meeting with Neonatology was held jointly with the Palliative Care team. While there is undoubtedly a role for joint meetings in many circumstances, this was expressly against our wishes (we were unable to rearrange the appointment since we only learned of it 20 minutes before the appointment was due to start). Holding the two meetings together was inappropriate as we were unable to engage fully with either team, with the resulting conversations being held at too superficial a level to enable us to explore all options.
  3. In this first meeting, when we brought up higher-level treatment options (such as full resuscitation at birthFull resuscitation at birthWhen a baby is born not breathing, there is a Resuscitation Council protocol that is normally followed.As with most treatments, there are differing opinions about whether any, some or all of this protocol should be followed when a baby with trisomy 18 is born not breathing: this was what we wanted to discuss., active managementActive managementRefers to treatment intended to cure or improve the underlying issue.With regard to apnoeas (see next tooltip), this treatment would depend on the cause, but it may include the use of oxygen, anti-epileptic drugs, surgery such as trimming adenoids, CPAP during the night or long-term ventilation through a tracheostomy. of apnoeaApnoeaTerm for when someone stops breathing, usually for one of three reasons: obstructive apnoeas occur because something gets in the wayfor example floppy airways collapseand central apnoeas are the result of the brain forgetting to breathe. The third type is one caused by a seizure.Apnoeas are common in babies with trisomy 18. Historically, it had long been assumed that they were always centrally caused. However, we had found research that suggested that a lot were obstructive, and seizures were also far from uncommon.Apnoeas which are not dealt with for whatever reason are a common cause of death for babies with trisomy 18., etc) we found that the professionals were generally unwilling to engage, instead deflecting the conversation. For example:
    1. When Helen brought up resuscitation options at birth, the neonatal consultant (Ida LeighPseudonym for the neonatologist who initially served as Rumer’s named consultant) interrupted to talk about her job.
    2. When Chris was discussing our thoughts about what general approach we might want to take with regard to Rumer’s care, again she interrupted. He clarified that he wanted to continue with the point, but she carried on and diverted the conversation to talk about Rumer’s name.
    3. While we were discussing the risks and benefits of surgical options for Rumer, the Palliative Care consultant (Tegan BlackmanPseudonym for Rumer’s Palliative Care consultant) deflected the conversation into talking about the option of going to the hospiceHospiceSee Blue Skies Children’s Hospice (pseudonym) in the event of Rumer’s death. While this was something we wanted to talk about with her, it was not appropriate at that time as it meant discontinuing an important conversation about treatment options.
    4. There was a repeated pattern of similar interruptions throughout the meeting. It was, and is, difficult to see this as anything other than an unwillingness to discuss all of the potential treatment options for Rumer with us.
  4. A number of statements were made during meetings with both the Neonatal and Palliative Care teams which strongly implied that there existed in the Trust an unwritten policy that only palliative care would be provided to babies with a diagnosis of trisomy 18. This policy made discussions of other options challenging at best. Although the existence of such a policy was denied by various staff, it is hard to reconcile this with some of the statements that were made to us by – often – the same members of staff. For example:
    1. During the same initial appointment with Neonatology and Palliative Care, Dr Leigh stated that we don’t operate on babies with trisomy 18 as a Trust.
    2. Again during the first appointment, Dr Leigh brought up the subject of intubation and ventilationIntubation and ventilationA high-level type of breathing support in which a breathing tube is inserted in the patient’s windpipe through which a machine provides breaths directly into their lungs., but said that for a baby with Edwards’ syndrome, we don’t do that here. This was reinforced during our second appointment with Dr Leigh (on 21st July 2015) when, asked about intubation for a baby with trisomy 18, she said: Some mavericks would, especially in the US, but we wouldn’t, I wouldn’t.
    3. At the second appointment with Palliative Care, on 20th July 2015, Dr Blackman specifically recommended against the use of an apnoea monitorApnoea monitorA piece of equipment that aims to sound an alarm when an apnoea is suspected. It usually takes the form of a mat, which is placed under the baby’s mattress, connected to a small monitor which alarms after a set period of time during which no breathing movement is detected., because you don’t want to turn your house into an intensive care unit. She went on to say that, in trisomy 18 cases in her experience, usually the first apnoea that parents notice is the one that kills the baby. This hardly seems surprising given that monitoring for apnoeas is discouraged in this way!
    4. At the 21st July neonatal appointment, Helen asked Dr Leigh how she would manage a baby with trisomy 18 who had been intubated prior to diagnosis. Dr Leigh said that she would confirm the diagnosis and withdraw ventilation. Helen pointed out that it would be difficult to withdraw ventilation in the absence of parental consent. Dr Leigh then countered with an account of a baby recently admitted to the neonatal unit in this position, who after diagnosis self-extubatedSelf-extubationSometimes an intubated baby pulls their breathing tube out, or moves in such a way that it becomes dislodged: this is called self-extubation.. Dr Leigh stated that she did not reintubate the baby. Chris queried whether she had the parents’ blessing. Dr Leigh felt that blessing was a very strong term, so Chris substituted agreement. Dr Leigh considered this for a minute before saying, I think we can say...assent. This story concerned us greatly as it implied that the policy against active treatment in the neonatal unit was so strong that physicians would withdraw treatment, without the parents’ consent, purely on the basis of a trisomy 18 diagnosis.
  5. Repeated statements that care was given on an individualised basis and that there was no such policy were hardly reassuring in the face of multiple comments similar to the examples given above. This was especially true when such reassurances were given in the same conversations as the comments that clearly described a policy of palliative care only.
  6. Between our initial (2nd July) and second (21st July) appointments with Dr Leigh, the majority of the neonatal consultants had met and devised a care plan for Rumer, which was circulated by email (see Appendix 5, page A‑15). This plan was generated before we’d had detailed discussions with the neonatal team about our wishes and assumed a palliative care only approach.
  7. On 29th July, Khushi HollowayPseudonym for the Consultant Midwife who became closely involved with Helen’s midwifery care (Consultant Midwife) devised and circulated a birth plan which, again, assumed a palliative care only approach, including the denial of a caesarean section in any circumstances other than maternal need (Appendix 6, page A‑17).
In summary

There was a lack of willingness to discuss all possible approaches to the management of Rumer’s care. The team routinely refused to engage in discussions around active management, even when we repeatedly initiated them. There seemed to be a palliative care only policy regarding the management of babies with trisomy 18 that would be implemented regardless of parental wishes.

There was no attempt to provide informed choice for us, and there were assumptions about what our wishes should be. Rather than acknowledging the different opinions as to the approach to be taken and managing this, the team preferred to proceed as if there was no disagreement. The production and circulation of palliative care only plans for Rumer’s care, made without our involvement or even knowledge, is particularly unacceptable.

The lack of engagement and assumptions about care management approach meant that we were, and continue to be, unable to trust the multi-disciplinary teamMulti-disciplinary teamRefers to a group of professionals with different areas of expertise who are working collaboratively on a case.. This led to increasingly challenging relationships between ourselves and the hospital teams.

We would like:
  • An acknowledgement that care-planning for babies without fully informing and involving parents is no longer an acceptable practice.
  • An apology for the failure to provide full information about all the options and to fully involve us in the decisions about the care to be provided to Rumer.
  • An acknowledgement that widely circulating care plans that have not yet been discussed and agreed with parents is not acceptable and should not have happened.
  • An assurance that future parents with a prenatal diagnosis of trisomy 18 will be:
    • informed of all care management approaches, including the potential use of active treatment options such as intubation and surgeries where relevant
    • fully involved in decision-making about their child’s care
  • An assurance that the Trust will produce a policy in order to guide health professionals in having these detailed discussions with parents who have a prenatal diagnosis of trisomy 18 (or similar conditions). This will ensure consistency, and that all parents will be given full information.
See Appendix 2 (page A‑7) for an amalgamated list of outcomes we would like.

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