End-of-Life Care

End-of-Life Care

Summarize

For many parents, comforting a dying child is also their first encounter with death in their lives. These parents may have no idea about the process their children go through when they die and how they cope with the stress and difficulties that come with it.

 

 

 

Generally, parents always hope to be mentally prepared for what might happen to their children; yet, they are not eager or afraid to understand these details. Discussing or reading about the specifics of a child's death in life or in books can bring immense sorrow to parents. However, we aim to provide parents with accurate and clear information to alleviate their fear of such a loss.

 

 

 

How children understand death

 

 

It is difficult to clearly divide children's understanding of death into age groups. This is because children have very different life experiences, such as having a life-threatening illness, having a deceased grandparent, friend or pet, or having a particular spiritual belief, which shape their unique concept of death.

 

 

 

Epidemiological

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Etiology & Risk Factors

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Classification & Staging

Here's a rough idea of what children of different ages think about death:

 

 

 

l0 Children as young as 2 years old do not understand "death" and can feel loss, but cannot distinguish between "death" and "brief separation."

 

 

l 3 Children aged 5 years and under see death as a temporary state; death is a brief departure or separation, and the dead will soon return. Children in this period are prone to confuse "death" with "sleeping".

 

 

l6 Children aged 10 and under who are aware of the reality of death may be curious about funerals and cemeteries. They may know that death is permanent, can happen for many different reasons and that when a person dies they can't do anything more.

 

 

l11 Children over the age of 7 see death as the ultimate state of human beings, which is universal and inevitable. They may begin to seek the meaning of death.

 

 

Children with cancer and their siblings are more exposed to the disease, possibly through the experiences of hospital and other patients with death. This means that at a very young age, they have a profound understanding of death and its meaning.

 

 

 

        However, it is important for parents not to assume in advance what their child's understanding of death is. You can better understand what your child thinks about death and why it happens by talking to them about the deaths of people they know.

Clinical Manifestations

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Clinical Department

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Examination & Diagnosis

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Clinical Management

The end of life

 

Typically, as a child's cancer progresses and death approaches, many noticeable symptoms will appear. The specific symptoms depend on the location of the cancer spread. In this section, we will explore the experiences of children in their final days and hours. Given the unique circumstances of each patient, your child may only experience one or two of these terminal symptoms. If you need more detailed information about the symptoms your child might experience during the final stages, consult your child's primary physician and nurse.

 

 

 

1. Excessive sleepiness

 

 

As the disease progresses, many children become more drowsy, sometimes sleeping more than they are awake. There are several reasons for this increased sleep. For example, the worsening of cancer can affect the function of vital organs, leading to more sleep; certain pain-relief medications can also increase sleepiness. If the cancer spreads to the bone marrow, anemia can also intensify fatigue. However, some children remain alert and responsive until the very end.

 

 

 

2. Anxiety and agitation

 

 

Some children become confused and agitated in the last few days, which can lead to sleeplessness and emotional distress. This is not uncommon and can be caused by anxiety and fear, increased pain, nausea, reduced oxygen levels or changes in blood chemistry.

 

 

 

For children who cannot speak at this stage, these signs of discomfort might be their only way to express feeling unwell. It is crucial to identify any obvious causes of their discomfort. Is it due to bedwetting, being too cold or too hot? Or perhaps they need to change their position? Additionally, you can gently talk to the child and assure them that you will always be there for them, which can help ease their anxiety. Simple actions like holding the child's hand or patting their face can boost their sense of security. Playing music or videos, telling stories, or praying can all provide comfort to the child.

 

 

 

If a child remains in a state of distress and pain, even at midnight, it is crucial to call for medical assistance. The child's discomfort might be due to worsening pain, which can be alleviated by adjusting the dosage of pain medication. However, if the discomfort stems from other causes, the treatment approach should be adjusted to ensure the child's comfort. In some cases, other types of medications may be necessary. When oral administration is not possible, rectal or subcutaneous injections can be used. These medications can reduce the child's anxiety, but their sedative effects might also make the child unable to communicate. At such times, hearing your voice, the voices of family members, and knowing they are nearby can provide significant comfort and reassurance.

 

 

 

3. Incontinence of urine and feces

 

 

Sometimes, due to the muscles around the bladder or intestines becoming weak and lax, a child may lose awareness of needing to use the toilet. In such cases, diapers, disposable pads, or disposable sheets can be used to keep the child dry and comfortable. In some cases, a catheter may also be considered to drain urine.

 

 

 

4. Breathing becomes more difficult

 

 

As children become more drowsy, their awareness and level of consciousness decrease. Clearing the oral secretions can be particularly challenging for them, making their breathing sounds rough and even noisy. While the increased breathing itself does not cause pain to the child, family members might find it distressing to hear these sounds. Sometimes, lying beside the child can help reduce the noise; playing background music can also help divert attention from the breathing sounds. Medication injections can also help reduce oral secretions. If these methods do not work, a portable suction device can be used to gently remove excess secretions from the child's mouth.

 

 

 

5. Changes in blood circulation and respiratory cycle

 

 

As the child's physical condition worsens, the circulation in their extremities typically slows down. This can make their hands and feet feel cooler to the touch, appear paler or bluish, or have spots. At this time, you can dress the child in their favorite socks and cover their hands and feet with cushions or blankets. If the circulation in the extremities makes the child's hands uncomfortable to the touch, you can gently pat their cheeks.

 

 

 

Another notable phenomenon is the changes in breathing frequency and depth. Sometimes, children will temporarily stop breathing and then start again. This process, known as 'periodic breathing,' can last for several hours or even longer until they completely stop breathing. While this breathing pattern does not cause pain to the child, it can be a significant source of distress for their family.

 

 

 

If your child is experiencing irregular breathing, it's often difficult to predict when the breathing will stop. However, as a parent, you're often the one who feels the death coming when your child's life comes to an end. At that point, the most important mission for parents is to be there for your child.

 

 

Prognosis

The final farewell

 

 

No parent can be fully prepared to accept the loss of their child. For a family, this is a profound emotional crisis. As parents, you should understand that there's no rush to handle any matters before your child passes away. Whether at home or in the hospital, you need some private time to be with your child and say goodbye. It is crucial for you to have a meaningful farewell with your child.

 

 

 

A meaningful farewell can be achieved through the creation of an inheritance. Creating an inheritance for children involves having them do or say things that will be remembered by others, such as making a keepsake album, crafting items, sharing personal belongings, leaving handprints or footprints, cutting a piece of hair as a memento, and having the child write letters to loved ones. As death approaches, it is crucial to help children fulfill their unfulfilled wishes and make them feel loved and remembered forever. Nurses and other medical staff should facilitate communication between patients and their families regarding these wishes and the creation of an inheritance.

 

 

 

When a child is near death, when siblings, grandparents and your loved ones are gathered together, you can fully express your feelings, grief, comfort and regret. Here are some things parents do during this time:

 

 

 

Listen to the music your child likes and hold your child and talk to your child

Last time I slept with my kids

Give the baby a bath and change into special clothes

 

 

 

1. Died at home

 

 

Many parents begin to engage with funeral service providers before their child's passing, discussing the arrangements for the child's funeral and posthumous affairs. After your child has passed away, if you are confident that you and your family are ready to bid farewell, you can reach out to the funeral service provider. When they arrive, you should be prepared in several ways. For instance, some funeral companies, to comply with workplace health and safety regulations, will place the deceased in a body bag and then transport them on a stretcher into the hearse. At this point, you can request that they keep the body bag open when they take the child away, place the child's small blanket on them, and place their favorite toys with the child. The process of handing over the child to the funeral service provider is a significant challenge for parents, and support from loved ones at this time is crucial.

 

 

 

2. Died in hospital

 

 

If the child is discharged from the hospital, they will likely face most of the situations mentioned above. This gives you and your family ample time to say goodbye to the child. You may need some personal space, as well as assistance from healthcare providers; in short, communicate with the medical staff as much as you need.

 

 

 

If you wish, you can also discuss with the medical staff to allow the child who passed away in the hospital to have one last visit home. Additionally, many parents choose to entrust their children to funeral service providers when they leave the hospital, so that the child can depart from the hospital with the parents. If you haven't yet arranged the funeral and need some time to do so, you can temporarily keep the child's body at the hospital.

 

 

 

For parents and children's relatives, leaving the hospital where their child died must be a moment of mixed feelings. At this time, the support of relatives is also very important.

 

 

 

On the remains

 

 

The human body undergoes changes in the hours following death. The child's body will gradually cool, and blood will clot under the skin, resembling bruises. As blood accumulates, the child's body will gradually become stiff. These changes become more noticeable over time, and when the child is taken to the funeral home, these changes may be particularly noticeable.

 

 

 

In addition, after death, the child's muscles become relaxed, and when you move the child or wipe the child's body, urine and body fluids may flow out of the child's body. You also need to deal with this problem when preparing special clothing for the child.

 

 

 

Body donation

 

 

It is often the case that children or parents are concerned about organ donation. Unfortunately, except for the cornea, most organs of children who die of cancer cannot be donated due to disease and chemotherapy. If you or your child is willing to donate the cornea, you can consult your attending physician or nurse.

 

 

 

Funeral preparations

 

 

Some families choose to start preparing for the funeral before their child passes away. While it is indeed a sad task to consider the funeral details, preparing in advance can ease the tension that follows the child's passing. You will need to decide how your child will be buried and when and where the funeral will take place.

 

 

 

Older children often want to be involved in designing their own funeral, and they may have very specific ideas about their funeral. Funeral service staff will provide plenty of advice and support as you plan your funeral, and will put your ideas into practice.

 

 

 

Of course, funerals are bound to be sad. But if you want, you can make them creative, positive and even beautiful. Most importantly, you know that you have the right to choose the type of funeral you want, so that your child's funeral is about the child himself, reflecting his life.

 

 

 

The parents and family members of the child can discuss with relatives and friends and choose the time of the funeral according to their own cultural background, spiritual beliefs and personal wishes.

 

 

 

There are many ways to fully express your child's personality and feelings at the funeral. For example:

 

 

 

Invite someone important in your child's life to the funeral

Bring music, books, nursery rhymes and small objects that have special meaning to your child

Arrange a photo or video display of the child's growth at the funeral

Put in some helium balloons

 

 

Parents often find it hard to recall the details of a funeral after it has ended. To address this, you can ask the funeral service staff to arrange a memorial book with signatures, a video recording of the funeral, and written versions of what the speakers said during the ceremony. These materials are also very helpful for the children's younger siblings —— as they may not have enough memory to remember the day.

 

 

 

Should children be allowed to attend funerals?

 

 

Parents often wonder if other children should be allowed to attend a funeral. While the answer is not always clear-cut, generally speaking, it can be helpful for children to participate in a funeral if they are prepared and given sufficient support.

 

 

 

Attending a funeral can enhance children's sense of participation. Through this process, they can reduce misconceptions about death and gain a better understanding of the physical changes that occur in their siblings or friends. To help children prepare psychologically, you can allow them to participate in funeral preparations as appropriate, respond positively and honestly to their questions, and clearly explain what will happen. It is particularly important to remind children that many people at the funeral will show signs of sadness, even crying, which is all part of the normal process.

 

 

 

During the process of burial or cremation, some children might ask very direct questions: "What will happen to their bodies?"  "Why is he placed on the ground?"  "Can she feel it?"  "What if he doesn't die?" or "What will her ashes look like?" These questions can be challenging for parents to answer, but these children need honest, simple, and accurate answers in an environment of care and love.

Follow-up & Review

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Daily Care

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Cutting-edge therapeutic and clinical Trials

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References

 reference material ：

 

1. https://www.caresearch.com.au/QuoCCA/Portals/6/Documents/Palliative-Care-for-Children-with-Cancer.pdf

Audit specialists

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