When birth and death coincide - In-hospital care modalities - Part Three

Marshall Klaus believes that “caregivers have three major tasks: - to help parents work through the loss and to make it real; to ensure that the parents start a normal grieving process;(and) to meet parents individual needs.”

How then does the caregiver meet individual needs?

Firstly establish a “support and interest” group of interested staff ,which will allow and empower staff to support other. 

They will then be better able to support the parents. They will also be able to support other staff;help them work through their issues;and train others to offer a more holistic service.

Secondly, draw up a procedure manual specific to your service and environment. 

It should include “sample copies of all the forms it will be necessary to fill out, such as birth certificates, death certificates, autopsy and genetic work-up consent forms. There will need to be ‘step-by-step’ directions for the staff to guide them through the intricacies of the paperwork. 

Suggestions of what to say and do, to (allow the staff) to effectively support the grieving family  (can be) included in the manual as well.”

Again the point needs to be made that the EMS staff are not expected to provide all the counselling per se. That is after all what the psychological and social services are there for. But the fact is that it is invariably the Casualty Nurses and occasionally the Doctors, who will have to deal with the family in the first instance.

Trauma services are provided on a 24/7 basis, unlike Social Workers or mental health teams who tend to keep office hours. To counter this , the EMS staff need to be taught how to provide support.

A ‘special considerations’ checklist should be included in the manual, which covers the following issues: -

1.There needs to be a photograph of the baby, so a Polaroid camera is invaluable. 

    (That was written in 1987 – although we now live in the age of the ubiquitous camera phone, it is still useful to have a Unit camera.) 

    Some parents will not want to take the photo at the time, but will inevitably come back for it at a later stage.

2. A ‘naming’ or baptism ceremony. 

    Most parents will have chosen a name for their baby or at least have a shortlist,so  there is no reason why the child should not be ‘named’ or even baptised.

This may be done in a Chapel, on the ward, indeed in any appropriate venue. 

A good idea is to have a bottle of ‘holy water’ kept in the drug cupboard. The water can be ‘decanted’ into something like a seashell for the actual ‘anointing’, which can subsequently be given to the parents as a keepsake.

3.Other keepsakes may include the ID band; a footprint or hand print; even a lock of hair.

4.The parents can be given a “memory box” (even a suitably designed  envelope) for the keepsakes.

Practical things to do whilst the parents are still on the ward or in the unit include:-

1.Place a discreet card on the door that communicates the position of the parents, to ALL the staff including cleaners, administrative staff, and kitchen staff.

2. Ideally the parents should be in a private ward.

3. Give the parents, grandparents and even siblings the opportunity to see and hold the baby if possible. This will largely be dependent on the gestational age and any degree of maceration that may have occurred.

4.The may even be able to bathe and dress the baby if practical.

Once the inevitability of the death has been accepted by the parents and the staff, the parents must be allowed to “parent”/care for their child if they wish and if it is  practical.

The medical staff are not abrogating responsibility for the baby-rather they are sharing it. 

In most societies there is  a belief, if only at an unconscious or primitive level, that “touching” equates with “healing”. 

Here the healing works in reverse; not from the parents to the baby, but in the act of caring and parenting, from the baby to the parents.

During the research and preparation phase of this book I was privileged to talk to parents whose children had died. 

Some had been “allowed to participate”, as one mother put it, whilst others were kept at arms length.

Both groups reported that those parents who were able to ‘care for their child’ had had a subjectively better ‘death experience’.

Both groups also felt that that those who had been involved had also had an “easier” recovery.

Clearly these are subjective feelings and emotions and anecdotal evidence. 

What was clear though was that the “involved parents” were content/felt pleased that they had had the opportunity, whilst the “non-involved parents” felt cheated and sad and often unhappy that they had not been afforded the opportunity.

Whatever the case, if the child is obviously dying, the parents must be told so that they can decide on the degree of involvement.

Apart from anything else, all the parents who were interviewed strongly made the point that whatever is done or not done, and irrespective of how they might respond or act, that they must always be told the truth.

If the child is stillborn or dies before the parents are able to be present, they must still be allowed to hold their child. Again they should be afforded the opportunity where feasible to bathe and dress their baby.

The issue of funeral arrangements must be raised by the staff before the family leave. In discussion, the designated staff member should try to assess the parent’s levels of family support; their understanding of any further intervention (such as a post-mortem); and perhaps make suggestions as to how to arrange a funeral.

There are a  number of practical issues such as cost and access to funeral services; specific religious requirements particularly for Jewish and Muslim deaths; various government burial or “death” grants which are often accessible but which need ‘paperwork’; and there is the need (in some countries) to register the birth of the child in order to register his death.

 When they are ready to leave the hospital, mention to them or show them, the Book of Remembrance, which all hospitals should have as a matter of course.

Invite them to have their child’s name included on the page for that day.

In addition, they can always have a verse or poem or the name printed and placed in the Book at some later stage.

The Book of Remembrance can be placed in a Chapel or special room in the hospital which has been set aside for bereavement counselling.

Additionally there could be a Garden of Remembrance where they might wish to plant a tree or shrub. 

This garden could be at the hospital itself or in a designated area in a public park; at a school, perhaps that of older siblings or even at a local old age home.

Some parents may wish to contribute to a “Bereavement fund”. The aim of such funds would include inter alia, the purchase of a digital camera and disks; to pay for tea and coffee; to buy books or pay for journal subscriptions; provide research or study grants; even go towards funeral costs for disadvantaged families.

When they are ready to leave your ward or unit you need to walk them out of the building, ideally to their car or taxi.

Once the parents have left the hospital, the staff should try to ensure that there is some degree of follow-up by an appropriate government agency or charity or self help group. 

This is often more difficult than it sounds. Social services are often compartmentalised; bureaucratic and simply under funded and under staffed.

The “volunteer” or self help groups often work under the rule that the parents must first approach them before any support is offered.

Certainly within South Africa this is often the point at which the protocols break down.

Given the population mix; given the widespread poverty; language difficulties; cultural differences; the distances involved between family and service providers, it’s somewhat self-evident that there will be problems.

Surprisingly though, a Nurse working in  a central London hospital makes the same point where she said , “self-help groups…exist, but it is often a matter of chance whether bereaved parents find out about these groups. The (hospital's) bereavement group…was therefore set up to help develop a more sensitive and effective approach, and to inform parents about other sources of support.”

To reiterate, medical and nursing staff must get into the habit of treating the whole family and not just the injured or dying child. 

They need to develop a concept of an “injured or dying” family.

In addition to the psychological support there are three practical things the staff can do for the parents.

Firstly they can attend the funeral. This gives the parents the chance to ask any outstanding questions that may be troubling them. It also allows the team member the opportunity of assessing the parents’ relative coping skills.

Secondly, about two weeks after the bereavement, the staff or the Unit or Hospital  can send a card or letter to the parents, expressing their condolences. A card could also be sent on the first anniversary of the baby’s death to remind the parents that the lines of communication have not been closed.

Thirdly, and on discharge, the parents should be given an information package developed by the hospital for that specific geographical/cultural area.

This package can include brochures from self-help groups and government agencies. 

It can also include information on the stages of mourning and present some guidelines as to what behaviour may be beneficial and what be unhelpful such as the long-term use of sleeping tablets or anti depressants.