Helping Your Child When Death Is Near
“I understand that my child may be actively dying. How will I know when death is near so that I can be supportive and loving and not panic.”
Here is some information that will help you cope as your child passes from this life. We share this information to prepare you to anticipate the changes which can indicate approaching death. We hope you never need it. But just in case you do need it, you might want to keep a copy of this article handy so you can refer to it if the time comes. This information is intended to help you feel more in control of the situation. Review if when you feel strong enough. You need not do it right now. Some parents put this in their “information file” and refer to it later.
If your child is receiving hospice care, the hospice team realizes that this period of time is certainly the most difficult for you and your family. They can be of great support and answer any questions you have.
If your child is not on hospice, this may be the time to call them. Hospice provides incredible support to families but many families are reluctant to call hospice because they feel they are giving up. We have known children who have gone on hospice and gotten better. You do not have to feel like you are giving up on your child by calling hospice! Rather, you are getting support for your child and your family that will make everyone, especially your child, feel much better. Ask your doctor or social worker to call for you and make a referral if you do not wish to make the call yourself.
The hospice team will be as honest, straightforward yet gentle and helpful as possible.
Your physician and the hospice nurse are available to answer any questions you may have about this information. We will tell you what to expect in general ways, as well as what you can do to make your child more comfortable at this time.
These changes are how your child’s body prepares itself for the final stages of life. Not all of these changes appear with each child, nor do they occur in any prescribed order, but you may notice some or all of these over a period of days or hours. You know your child best and may notice subtle changes that will tell you what is happening to your child’s physical condition.
As the body’s heat regulating system fails, the hands and feet become cool first. They may be pale or bluish in color. Your child’s face may become grayish and the lips or nose blue. Since most children at this phase do not necessarily feel cold with this sign, you may want to ask if a blanket would make your child feel warmer. In some instances, your child may feel feverish and appear flushed. You can use cool wash cloths to sponge him or her off and other familiar comfort steps you may have used in the past.
As the heart slows down, the heartbeat becomes irregular, and blood circulation slows. The pulses in the wrists and feet become very faint. Because the heartbeat is irregular, it may be very rapid at times and slower at others. As the circulatory system slowly fails in its effectiveness, changes in temperature and color may occur.
Your child’s need for food and drink will decrease as the body naturally begins to conserve energy. The muscles that control the mouth, throat, stomach and bowels will be less effective also. Fluids such as tea, juices, ice chips, frozen juice pops or sherbet to suck on can be offered as long as your child wants to drink and can swallow. If too weak to drink, you can give fluids using a teaspoon, oral syringe or medicine dropper. You may need to raise their head a bit to prevent choking. Do not give any fluids by mouth if your child can no longer safely swallow. Although it may feel very unnatural to not be aggressively pushing nutrition, the body often does not tolerate or need the fuel at this late stage. The hospice team will help you find other ways to be comforting and feel active in your child’s care. The body‘s requirements for fluids and food decreases as they use less energy and are sleeping mostly or becoming more frail. Too much fluid at this point of their condition can actually cause more distress, lung congestion and general discomfort since circulation and digestion are greatly slowed. If your child has a tube feeding or IV fluids the team may discuss with you the possibility of slowly decreasing the amount based on how they can tolerate it.
Your child may experience difficulty with breathing. If he or she does, there are a number of things you can do. Regularly turning your child side to side, with the head elevated, or propping in a well-supported sitting position or holding him or her in your lap will relieve shortness of breath, and provide comfort as well. Using oxygen may be helpful and necessary. The nurse can evaluate the indications for oxygen and contact your child’s physician.
Breathing may become rapid, and then become very shallow and irregular with 10 to 30 second periods of no breathing. This is called apnea. There may be excessive secretions/ watery mucus in your child’s mouth or throat that he/she is too weak to swallow or clear. This may cause a gurgling sound; which can sound unsettling, but usually does not cause the child any discomfort. To aid in drainage of these secretions, you can turn your child on his or her side or to keep the head elevated. Your nurse will evaluate the need for medication to help reduce these secretions which may increase as death becomes near. Maintaining a calm, reassuring atmosphere also helps relieve labored breathing. You may also try guiding your child through relaxing images/memories.
Some children are alert and mentally clear until the last moment of life. Others are confused, restless, sleep a lot, may be difficult to rouse, or may go in and out of wakefulness. Speech can become confused or difficult to understand. Even if your child cannot communicate with you in words, assume he or she can hear you, feel your touch, and / or sense your presence. Hearing is believed to be the last of the senses to be lost, so talking to your child, maintaining gentle physical contact or playing soothing music is encouraged. Sometimes nonverbal cues can confirm this, i.e., eyebrow movement/expressions, facial expression change, fluttering in eyes, hand grasp or extremity movement, and changes in respiratory rate/patterns. The familiar sounds, voices, touch and embrace continue to bring comfort and security to your child- as well as to you.
Pain and Comfort Changes
Some children reach the ending of their lives without experiencing any pain at all. Others may already be taking doses of pain medication around the clock at this point. Your child will need to continue taking their pain medication so it is important to keep him or her on their schedule. Even if your child cannot communicate with you, rest assured that you will be able to tell if he or she is experiencing pain. Some non-verbal signs of pain are grimacing, moaning, increasing irritability, restlessness, interrupted sleep, and changes in breathing. Work closely with your child’s physician or the hospice nurse, if he or she can no longer swallow, to change the type of medication or how it is given (i.e., something stronger, switching to a liquid form, an infusion, suppositories) if this becomes necessary. Each child’s condition is unique so comfort needs may be due their increased immobility and weakness, inability to move themselves. These too should be treated to assure they are comfortable.
It is important for you to understand that a Hospice nurse is available, 24 hours a day to speak with you on the phone about any or all of these changes, or to come to your home if necessary. Some families have wanted a nurse there before and during the time the child is at this final stage, while others have wanted to be alone when their child died, seeing this as a private time for family only. If this is the case, the nurse can still make the appropriate phone calls for you (to the doctor, mortuary, others involved in your child’s care, and coroner if required), as well as notify the clinic, pediatrician, others on the care team you went to regularly if appropriate. There may also be a social worker and/or a chaplain available after regular business hours to support you in your journey.
Families have often commented that by having their child die at home, as opposed to dying in a hospital, they could take as much time as they needed to say goodbye. They could call in other family members, say prayers, bathe and dress their child, make handprints or footprints, save a lock of hair, or whatever activities or rituals they found meaningful and comforting. If you have mortuary attendants come to your home, you may want to carry your child out to the car, as there is a difference for some parents between “surrendering over” your child to them and their “taking” your child from you/your home. Some parents feel it is easier if the attendants do not cover up your child’s head and face until they have them in their vehicle. Please let your preferences be known. There are lots of choices so remember that you need only do what is comfortable and right for you and your family. The hospice team can help support you in making decisions, plans and final arrangements. They are there for you day and night.