Where will my child die?
Many people assume that their child will die in hospital but this doesn’t have to be the case. Home or hospices, or a combination, can provide comforting, peaceful environments where you should have all the support you need to ensure your child is well cared for and comfortable. It’s up to you and your child to decide what’s best for you as a family.
Although some parents and their children have strong preferences, others might worry about making the ‘right choice’. Below is information about home, hospice and hospitals to give you a clearer picture about what these environments could offer. You can ask your specialist nurse or your CLIC Sargent Social Worker for advice about your options. They may be able to arrange a visit to a local hospice to help you decide if this would be a good choice for you.
Try to discuss your views together as a family but be mindful that you might need to review these choices as your child’s health and condition changes.
Being at home
Home can be a comforting place to be for everyone in the last days of your child’s life. Here, your child will be in familiar surroundings with relatives, pets, possessions and toys close by. If you have friends and family nearby, their support can help ease the pressure if you or your other children need a break.
Providing care at home
You might feel uneasy about delivering palliative care but care professionals will be in regular contact, visiting often, and can provide support when it’s needed. Some hospices also provide a home service, although this is not yet available throughout the UK. Check with your local hospice what services are available to you.
Managing symptoms at home is a free booklet by CCLG and has been written to give you information about common symptoms, their causes, treatments and suggestions for simple things that you can do at home to help your child. Or you can ask your child’s doctor which symptoms to expect and how they can be managed.
SimonWe had a Macmillan nurse who led a team of nurses and health care assistants that visited daily whilst Hannah was at home to assist with her care and medication.
When your child is near death
It can be difficult to know when your child is approaching death but if you feel you need support, you can call your nurse or whoever is coordinating your care to request a medical professional to come and be with you. Talk to your palliative care team beforehand – they will provide advice and support to help prepare and guide you.
You or your child might want certain people to be there when your child dies. Just keep in mind that it’s impossible to guarantee this, and that includes you as their parent. Sometimes a child will die when their parent pops out of the room or while they are sleeping. If it helps to ease your mind though, you could make a list of important phone numbers that include health professionals, or someone who can be with you quickly if you need another pair of hands.
After your child dies
You should have already agreed who you’ll need to call at this point, but you can always contact your community nurse or GP. Your GP will visit you at home and will normally issue a medical certificate of death (you need this before you can register the death).
If the cause of death is unclear, a GP may not be able to issue a certificate and may need to refer to the coroner. If a post-mortem is required, this will delay getting the certificate but it should only be by a few days – this is very rare though.
Once the death of your child has been certified by your GP, you can contact a funeral director. You can talk to them about having time with your child. They do not necessarily have to collect your child straight away if you don’t want them to. You could discuss the option for them to stay at home, or be taken to a hospice facility even if you’ve not been receiving support from one.
SimonHannah died in the evening on a Thursday. Once her death was confirmed by the nurse specialist, all the medical staff left us, taking some of the medical equipment away with them. The following day we contacted our local funeral director who took care of everything, coming to take Hannah away and making further arrangements.
Taking care of your child after their death
At the hospital, staff would usually tend to your child by washing them, replacing any dressings and dressing them in clothes or nightclothes of your choice. This can be an important and comforting ritual for parents to perform at home too. There may also be specific cultural or religious preparations you’d like to carry out. You can take as much time as you need to do these things, to have family round and to say your goodbyes.
If you would like to keep your child at home for more than a couple of days, talk to a funeral director about making the environment suitable
If your child stays at home, at some point they will need to be moved. This can be arranged through your funeral directors or you may use a private ambulance service or you can do it yourself but you need to discuss this with your team.
In a hospice
Hospices provide palliative and end of life care for children and young people. They work in close partnership with other care professionals and provide holistic care to your family – that is, they take into account not just your child’s medical needs but their emotional, social and spiritual needs too and those of the siblings and parents.
What you can expect in a hospice
Many provide a range of services including 24-hour care, emergency care, short breaks, practical advice, specialist equipment, complementary therapies like massage and bereavement support. Staff will be on hand to guide you every step of the way and will be led by your needs, giving you space or support as you need.
Hospices are very positive places that aim to fill children’s lives with play and fun.
You can all spend time together without having to worry about home chores like cleaning or washing, as it’s all taken care of.
Hospices can be a great source of help at any point while your child is having palliative care. It’s often thought that they should be accessed only towards the end of life but connecting with one as early as possible can often open up support you didn’t know was available. This can include counselling and links to bereavement support for the family.
Hospice staff will be highly skilled and experienced and able to support your child as they reach the end of their life. They can usually accommodate anyone else you and your child want with you at this time. It’s important to respect the wishes of your child and their siblings when you think about this.
They can sometimes support you in your own home, so it’s worth asking if this is something you’d prefer.
After your child dies
After your child has died, the hospice will enable you to care for, or spend time with your child however you need to – whether that’s to have a cuddle, remove any medical equipment, wash them, tidy their appearance, take a lock of their hair or a handprint or anything else you’d like to do.
Most hospices will have private and peaceful spaces where you and other family members can spend time with your child at any time until the funeral. Or you can make contact with a funeral director who can look after your child at their parlour. You could also talk to them about taking your child home to be with you until the funeral.
The staff will help you to make arrangements and aim to uphold your choices about where you want your child to be, getting the relevant medical certificates and any practical or emotional guidance you need during this time.
In the hospital
Your child may have become too fragile to move from hospital or you may wish to stay in hospital. Hospitals are well kitted out for attending to your child’s medical needs but they may not be as well equipped to provide the emotional and spiritual care that you as a family need.
What you can expect in hospital
It’s also more difficult to adapt a hospital environment to you and your child’s needs: noise, smells, food, music, personal belongings, having pets there, and space to stay together as a family, might be out of your control. Siblings might also need somewhere to ‘escape’ to if they become overwhelmed, which can be difficult in a hospital environment.
That being said, many parents will have very positive experiences in hospital – it all depends on where you are and the facilities available to you. You can be sure that your child will receive all the medical care they need and will be made comfortable each step of the way, as far as possible.
Time with your child after death
The ward staff should arrange for you to have as much time as you need with your child. Hospital facilities vary, but your child can normally stay on the ward so family members can come and say goodbye. Some hospitals will have a more private space, such as a side ward or a special room.
At some point your child will need to be moved from the ward to the hospital mortuary, unless they are a new-born. The funeral directors of your choice will make arrangements to collect your child and to take them to the funeral parlour while arrangements are made.
If you would like to keep your child at home, you can talk to a funeral director about whether this is realistic and if so, how to make the environment suitable.
Getting the medical certificate
A member of the medical staff will normally issue a medical certificate of death. You need this before you can register the death.
The certificate will state the cause of death in medical terminology. If the cause of death isn’t clear, the doctors will not be able to issue a certificate immediately. A coroner will become involved and decide whether a post-mortem is needed. A post-mortem is a medical examination following a death. If this happens, it will delay the issuing of a medical certificate of death.
Sometimes post-mortems are used to understand more about cancer so that other children may be helped. Your doctor may talk with you about this but it can only take place with your written consent, so long as the coroner is not involved. Think about what feels right for you and your family before making a decision. If you consent to a hospital post-mortem in this way it will not delay the issuing of a medical certificate of death.
