When a family member or friend is dying, many parents struggle with how much of the dying process they should allow their children to witness. It is not uncommon for a dying adult, who lives with their children or grandchildren, to choose against a home death in an effort to “protect the children.” While many families would welcome guidance in this area from their health care providers, few of them receive training on the topic so there tends to be reluctance across the disciplines to offer such advice.
The experience of parents feeling uncertain regarding their children’s inclusion at the bedside of a dying loved one is relatively new. Throughout much of history the norm was for dying and death to happen at home in the presence of everyone who lived there, including the children. In many parts of the world this is still the case. Excluding children from the bedside of a dying friend or family member can have unintended effects, such as depriving children of the opportunity to share their loved one’s final days. Much like adults, children benefit from having the opportunity to say goodbye to someone who is dying. In addition, when not given the option of being at the bedside of a dying friend or family member, many children will imagine scenes that are much worse than the reality.
While the appropriate amount of time at the bedside will vary based on both the developmental age and the personality of the child, children of all ages can benefit from being included. However, it is important to prepare children for what they are likely to experience during the dying process, and to foster an environment where they feel comfortable asking any questions that may arise for them. Below are some guidelines for including children and youth at the bedside when someone they care about is dying.
Prepare children
It is important to prepare children for what they are likely to experience at the bedside of the dying. If the person is dying at the home of the child, the child will have the advantage of seeing the changes more gradually, which can be less startling. Some children will have a need for a lot of information, including what could happen as death draws near, while others will need information only about what is happening now. Follow the child’s cues for how much information they want.
These are some areas that may need to be addressed at various times, regardless of where the person is dying.
Rules of visiting
Does it need to be quiet in room? Is there equipment in the room that should not be touched by children, such as a pump for pain medication? If the child needs a break from being at the bedside, is there another area where they can spend some time?
Sleepiness
Explain to children that dying is a very tiring process. The person may be very weak and sleepy, or they may not be waking up at all any more. However, even if they are not waking up they may still be able to hear, and they may know who is around them. In the hours before death occurs, even though the person may seem as though they are sleeping, their eyes may be open and not blinking at all. They may even wake up and talk briefly before dying, which can be very surprising for everyone.
Eating and drinking
Explain to children that when a body gets very close to dying it usually does not need anything to eat or drink. It is important to help children understand that the person is not eating and drinking because their body is dying, as many children will be concerned that their loved one’s body is dying because it is not eating or drinking. Even if the person were to eat and drink it would not help them stay alive any longer.
Pain
Many people will be receiving pain medication towards the end of life. Children tend to think of medicine as being something people take only in order to get better. Explain to children that pain medication is to help the person feel more comfortable – it will not help them get better or stop the dying from happening. Pain can usually be well controlled at the end of life. If, however, the person is experiencing a lot of pain, avoid having children visit until the pain is under control.
Confusion and agitation
Due to the changes happening within the bodies of people who are dying, they may become confused and/or agitated. They may call people by the wrong name, or perhaps not know where they are. They may do things such as pick at their bedding, or become very restless. There are medications that can help with this.
Skin colour and temperature
Let children know if the person’s skin colour is different than usual. Perhaps Grandma’s skin is very yellow because her liver is not working properly anymore. During the final hours of life the arms and legs may become very cold, and parts of the body may turn a blue colour (such as lips, knees, fingernails and toenails).
Breathing changes
When a body is getting close to dying the breathing pattern will often change. At times it may be irregular with long gaps between breaths, while at other times it may be rapid, regular and deep. In the final days of life, the breathing may become very noisy and even sound like gurgles, which can be upsetting for children to hear. It can help to explain this type of breathing to kids as being similar to snoring; it can sound horrible to everyone else yet not cause any discomfort to the person who is doing it. Let children know how the person’s breathing has changed before the children enter the room.
It is common for parents to also be uncertain of what to expect of the dying process, and thus find it difficult to prepare their children. Do not hesitate to ask members of the professional care team, such as physicians, social workers, and nurses to participate in these conversations. When having these conversations with children, use simple, concrete, language. Call the illness by its name, and avoid using euphemisms for dying and death. For example a father’s liver cancer can be described as, “Dad has an illness called cancer. It is in his liver. The liver cancer is causing his body to die.”
Encourage questions
Children will likely have many questions about what is happening to the dying person but without encouragement they may be reluctant to ask them. The following are some principles that foster an environment for children to ask questions:
- Let children know that they are welcome to ask any of the questions they have. If you do not have the answer to a child’s questions, then be honest and tell the child “I do not know.” If there is someone else on the care team or in the family who might know the answer, facilitate a conversation with that person to find out if they can answer the child’s question. However there are many questions about dying and death to which there are no answers, and it is important for children to learn that there are some questions that even adults cannot answer. The word “mystery” can be a helpful one to use with even young children when explaining the questions that arise in life to which we are unable to know the answer.
- Make sure you understand the question that is being asked. It can be easy to misinterpret children’s questions. For example, when children ask “What happens after death?” it is easy for adults to assume they are enquiring about afterlife. However, many children who ask this question, especially young children, are in fact interested in knowing what will happen to the person’s body after death.
- Be prepared to repeat your answers as the child may ask the same questions over and over.
- Thank kids for being brave enough to ask their questions.
Suggest ways to interact
Throughout the disease process it’s helpful to reassure that the child will continue to be involved in the care of the dying person. Yet, children often struggle to know how to interact with someone who is dying when that person has little energy and is spending most, if not all, of their time in bed. The following are some ideas for how children can be included at the bedside of someone who is dying, even if the person is no longer responsive:
- Help with mouth care, such as swabbing the mouth or applying moisturizer to the lips (depending on the age of the child).
- Paint finger nails and toenails.
- Decorate the room.
- Choose music.
- Apply moisturizer.
- Hold hands.
- Tell stories of favourite memories or what happened in the child’s day.
- Do homework or other quiet activities such as colouring or playing video games, or watching a movie, at the bedside.
If the person who is dying is someone who the child shares a close physical relationship with, help the child maintain close physical contact as much as the dying person is able. Perhaps the child can nap or just rest in the hospital bed next to mommy. Or perhaps the child can ride on grandpa’s lap when grandpa is in his wheelchair.<
Children who do not want to visit a dying person should never be forced to do so, nor made to feel guilty in any way. It is important to explore why they do not want visit, to help clear up any misconceptions they may have, but their decision should be respected. There are many creative ways for kids to maintain a connection with the person from a distance, such as having them talk over the phone or Skype, even if the conversation is one way due to the dying person’s inability to respond. Children can also make cards or drawings, or write or dictate letters for someone to bring the to the person who is dying.
Consider the practical
Make a plan with children about how they want to find out about the person’s death. If they are at school when the death happens, find out if they want to be picked up and told in the middle of the day, or if they would prefer to wait until they get home to find out. Ask if they are hoping to be with their dying family member when he or she dies. If so, discuss with them that it is not always possible to know when someone will die, however reassure them that effort will be made to have them there. For a child who does want to be present, make a plan regarding who might be available to pick them up from school or other activities to bring them to the bedside, and let them know that it may not be an immediate family member who is able to do this.
Model grief
It is by watching the adults around them grieve, that children learn how to process their grief. Thus children benefit from having caregivers who teach them through words and actions that grief is a healthy and natural human response to experiencing the dying and death of someone close to them. It is not something to be fixed or avoided, but something to be lived.
Summary
Today’s Western society is one in which death has largely been removed from the home. As a result it can be easy for adults to question whether children should be at the bedside of the dying at all. Most adults who have reservations about a child witnessing a loved one’s death do so out of concern for the child’s well being. Yet, not being present at the bedside does not in any way decrease the pain of the death for children. Instead, when prepared for the experience and surrounded by supportive caregivers who are able to create a safe environment for questions to be asked and grief to be experienced, children of all ages tend to benefit from having the option to share the final days of a dying loved one. Grieving with their community at the bedside of a person who is dying is an experience for which most children are grateful.
Content reviewed May 2019