On Talking to Children About Death and grief

Recently, some of my online groups have been talking about how to talk to children about death and grief. I realized that I am in a unique position with my work at the intersection of life and death to share what I have learned, since I visit with many children and their families about death and grief.

I have found that the resource, "What Will I Tell the Children?" published by the University of Nebraska Medical Center has been one of the most useful pieces of literature for me.

Here are some of the things that I have learned in my work as a hospital chaplain about how best to support children with regards to the death of a loved one.

1. The importance of security and secure attachments cannot be stated enough. If the child is experiencing the death of a parent, they need security that they will be cared for.  They need to know that adults will meet their needs. It is best to explicitly say this. It can be as simple as, "I know your mom has cared for you up until now, but now we, your aunt and uncle, will be taking care of you. You will live with us."  If the child is experiencing the death of a grandparent or other relative, they might feel like their parents could die too.  Listen to these fears because they are real. Share that while everyone will die someday, that time will likely not be for a very long time.

2. Help your child to say goodbye  This can take place at the bedside or at the funeral service. Encourage the child to say goodbye in their own way.  The Four Gifts of Dying ("I love you", "Thank You", "I'm Sorry" and "Goodbye") are as appropriate for children as they are for adults. If the death was sudden, encourage the child to write or dictate a letter to the person that died. It can be buried or cremated.

3. Give accurate, age-appropriate information about the dying process Use simple concrete language. Do not use euphemisms such as "lost" or "passed." Do not be afraid to say "Dead" or "Death." Talk about how once someone has died, they do not hurt anymore. Be prepared for questions like "What happens after death?" and "Where does the body go?" It is okay to let your child know that you do not have all the answers.

4. Keep the lines of communication open  Let your child know that they are always welcome to talk. Talking about the loss of their loved one is important and won't cause additional pain. You can say, "I miss Grandpa too. Do you remember some fun times we had together?" 

5. Enlist the help of outside resources  Involve your child's school (principal, social worker and school psychologist), church (if relevant), and therapists (such as play therapists or family therapists).  Let your child know that they are many people who care about their well-being.

6. Normalize Grief  Let your child know that it is okay to feel sad, angry, or happy. Sometimes it is possible to feel all those feelings at the same time. Say that the intensity of these feelings will come and go and whatever they are feeling is okay.

7. Understand the long-ranging concerns Children and teenagers who are losing loved ones might be concerned about the future. They might ask, "Where will we spend Christmas now that Grandma is dead?" or "Who will walk me down the aisle at my wedding if Dad is dead?" Provide love and reassurance. Recognize that birthdays, holidays and other special days such as graduations, proms and weddings will come with grief.

How to talk to children about serious and terminal illnesses

Recently in my work at the hospital I have accompanied a number of children who are learning that their parents or grandparents have serious illnesses or are dying. I have provided support and end of life education to many parents and relatives. Additionally, some clergy in professional groups of which I am a part have been discussing this same topic. So I am sharing what I have learned in the hope that it might be helpful for others.

Here are some helpful tips:

1. Be honest
Children are incredibly intuitive beings. They can sense their emotional environment and they know when something is different.  You are not sparing children's feelings by hiding a serious diagnosis. By honestly saying, "you father is sick" or "your grandmother is dying", you are validating what children already probably know.

2. Use simple, concrete language
This is not the time for euphemisms.  Children tend to be very literal in their understandings of the world.  If you say, "We are losing grandpa" they might not understand what that means. Saying, "Grandpa's heart and lungs are sick, and they are having a hard time doing their job to keep him alive, so he is dying" is preferable. Do not be afraid to use the words "Cancer" or "Dying" or "Death."  Odds are, your child is probably already thinking it, so saying it out loud gives them permission to ask questions.

3. Be open to questions
This is not necessarily comfortable. But giving your child space to ask the questions that they have is an important way of caring for them. It is a way of assuring that they are seen and heard. Also be willing to admit, "I don't know the answer to that" and enlist the help of nurses, doctors, social workers, chaplains, and education professionals.

4. Provide reassurance
Children often have questions related to security, such as, "Who will take care of me?" and "Can we afford this?"  It is crucial to remind children that they are loved and cared for, and they will continue to be cared for. If parents are unable to be provide the necessary care and support while hospitalized, enlist the help of other relatives or caring neighbors to provide support and attention. Also, reassure children that financial matters and other "adult" worries are being taken care of. A child's most important job is to continue to be a child.

5. Encourage children to be as involved (or not involved) as they wish
Provide children with the opportunity to visit their parent/grandparent/other family member in the hospital. Because of developmental needs, children often need to see someone who is sick and/or dying to understand what is happening. There is often an impulse to give children happy memories or not see their relative in a sick or weakened state. But also give your child an opportunity to refuse. Do not pressure them to touch the sick person or talk to them, as this is an extremely difficult situation. If you child chooses to visit someone who is seriously ill or dying, designate a specific support person for them during that time. Make sure that person is attentive to the needs of the child.

6. Prepare children for what they will see upon visiting
Provide careful and developmentally appropriate information. For a younger child you could say, "Your mom has a tube down her throat. It is breathing for her."  For a teenager you could say, "Your mom is on a sort of life support called a ventilator, it is doing the work of breathing for her." You could describe the room and talk about who might be present in the room ("Your dad has a nurse and a doctor in his room with him who are taking care of him") and encourage children to talk to their parent/loved one or touch them if they like. If someone has extremely traumatic injuries, be sure to emphasize that their pain is being managed by the medical team.


Here are some resources that I have used in my work:

When Someone Has a Very Serious Illness by Marge Heegaard

Resources from the American Cancer Society

The Elephant in the Room by Amanda Edwards

I hope to continue to curate a list of other resources. Stay tuned for my next blog post about how to talk to children about death and grief.

Stories from Chaplaincy: Warm and Dead

Late in the afternoon on a winter day a "trauma code" came overhead and through my pager. This case is the singularly most horrifying case that I experienced during my year of residency.  It still haunts me.

A patient was brought in on a search and rescue stretcher.  The EMS team tracked tons of snow into the trauma room. There was so much snow and ice brought in on this patient that the social worker and myself ran to the blanket warmer, grabbing stacks of blankets to place over the floor to prevent the team from slipping. The doors of the trauma room were closed.  Maintenance was notified to crank up the heat to over 85 degrees.  The team who was performing CPR was sweating profusely. I wrapped warm blankets around tearful firefighters and EMTs who were shivering even in the heat of the ED.

They needed to talk.  The patient was found in the water in the mountains. Clothes were frozen. Shoes were frozen. They didn't know who this person was or where they came from or how long they were in the water.

The Emergency Tech came out of the room in tears.  She couldn't start an IV.  She couldn't draw blood. The patient's veins were ice. She laid her head on the counter. A nurse came out of the room.  He said, "the patient isn't dead until they are warm and dead.  The patient isn't warm yet, so they aren't dead."

Warm and Dead.

And so for the next hour or so, rounds of CPR continued on the patient with ice in their veins. It is heart breaking to watch such fervent life-saving efforts. It is heart breaking to watch people who have dedicated their life's work to saving lives to be trying to save an impossible life.

Once a warmer body temperature was reached, resuscitation stopped.

I still don't know how the patient's family knew to come to our hospital. I know I didn't call them, and that was usually my job. I looked for a wallet, but there was none. I think the state patrol somehow notified them.  And also notified a victim's advocate who came to the ED covered in freshly fallen snow.  Such pure snowflakes amid such unrelenting horror.

From the family we learned that the patient disappeared after a call made several days earlier.

But after that, we don't know. Only that the patient was submerged for a few days and somehow their family ended up weeping into my arms.

When I thought of this patient, I could only think of white skin, the color of ice, frozen solid. And of ice in veins. And I would weep for the senseless and horror and aloneness of this death. And I would pray that this person knew some kind of comfort in their last moments out in the elements. And that when they were declared warm and dead, they might know how many techs and EMS workers and nurses and chaplains wept for them in a fluorescent ED.

Stories from the ICU: I see your suffering and I am not repulsed by it

As I unwind from my CPE residency, I have decided to share some of the amazing stories from my time as an ICU chaplain.  These are my best attempts to capture some of the fleeting and complex moments of those sacred hours.

This story comes from a night shift and from a call to the Cardiac ICU. I arrived at work to utter chaos. A patient had come into the Emergency Department in cardiac arrest. He coded twice in the ED, and much of the day chaplain and social worker's work that afternoon had been to find his family. There was one daughter who was camping in the mountains and unreachable by phone. Upon my arrival, the patient's son and daughter in law had been located and were at the hospital, although not in the patient's room.  The patient coded again and the physician begged me to locate the family. The patient was dying in spite of our best resuscitation efforts and chest compressions and intubation were non-beneficial. We tried never to have a patient die with a tube in their throat, it was distressing and traumatic for the family and uncomfortable for the patient. I tore off running to the family waiting area. Then the cafeteria. Then the chapel. And the parking lot. The family was ultimately located in their car outside the ED by an emergency nurse. We jogged to the CICU to what had to have been a horrible scene. Sometime in the course of the code blue, the patient had started bleeding and blood surrounded him on the bed, on the sheets and pillow and the floor. To someone accustomed to such things, it simply means putting on PPE, including plastic booties, a gown and gloves. So I did so. But to a family who belonged to that patient in the bed, it was devastating. The family was unable to bring themselves to enter the room.

The physician spoke with them in the hall and indicated that the patient was dying. The physician requested to extubate the patient and stop all heroic measures, as they were non-beneficial. The family gave consent. I stood with them outside the room as the patient's RN and respiratory therapist removed the tube. I warned them of the disturbing sound of suction. I stood with them in their suffering.

The patient began agonal breathing almost immediately. He was alone in the room and I went to his bedside. The family was frozen in the doorway.

Holding the patient's hand, I turned to them, saying, "He is dying. I will stay here with him and hold his hand so he is not alone. You do not have to come in if you do not want to, I know this is not how you want to see your father.  But I will stay here."

After a few minutes, the patient's son came to the bedside. He still was not touching his father. I said, "The breathing pattern that you hear is common for someone who is dying. He is not in pain, it is reflexive. Eventually there will be longer and longer pauses between breaths and then there will be a point where he will not take another breath."

The patient's son said, "Is it okay if I touch him?"

I responded, "Absolutely."  We each held one of the patient's hands, looking at his face, watching his chest rise ever so slightly. Until he was not breathing anymore.

Chaplaincy is standing in suffering. It is seeing suffering and not being repulsed by it. It is seeing the love and connection between father and son. It is about marking sacred moments. It is about bearing witness to love. For the opportunity to stand in a blood-spattered room and hold an elderly man's hand as he passed from this world to the next. To bear witness to suffering and not walk away. This is chaplaincy.