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.

They will know we are disciples by who loves us...a sermon on John 13:31-35

A sermon preached as guest preacher at Diamond Lake Lutheran Church in South Minneapolis on April 24, 2016.  

Grace, peace, and mercy are yours from the Risen Christ. Amen.

It is a joy to be among you, and I am thankful for the invitation to preach today as part of the In A Different Voice series. I am a former preaching student of Dr. Karoline Lewis and currently serve as a chaplain for Regions Hospital and HealthPartners Hospice. Thank you for welcoming me into your midst on this Fifth Sunday of Easter.

My sermonating this week has been accompanied by the ever-present song running through my head of “They will know we are Christians by our love, by our love, they will know we are Christians by our love.”  But I find this to be particularly irritating, because quite often Christians are not known by their love for others. Christians are more easily identified not by their love, but by whom they seem to hate the most. This song has been running through my head this week as I observe religious liberty legislation take on a fever pitch in the news. We see people of faith perpetuating hate towards those who identify as members of the LGBTQ community, and calling that hate “religious devotion”. Many Christians perpetuate xenophobia, fear of the other, as they express hatred towards our Muslim brothers and sisters. And progressive Christians often exhibit the same hatred and disgust for more conservative evangelical and/or fundamentalist Christians, I have certainly been guilty of this in my own life.

Most of the time we think we have a pretty good idea of what it is to love one another. We love our spouses, children, parents, siblings, friends, and pets. We might abstractly love people or groups of people, for example, I love people nearing the end of their lives, as well as loving individual patients. Where things get a little more complicated is in loving those who are less loveable.

 We find it easy to love those who are like us. Many of us who are married or partnered find ourselves with someone who comes from a similar ethnic, socioeconomic, and religious background. Many of us choose our friends based on similar social and political leanings. It takes work to love someone who is different from us.

And human love is also imperfect because we want our love to be reciprocated. We want it to be equitable, guaranteed, and safe. We want to love and be loved, and we are willing to invest ourselves in it, if there is a guarantee that our love will be reciprocated or at least appreciated. Because to be loved and to love requires a certain amount of vulnerability, and we have learned, through socialization or hard-won experience, that vulnerability is an opportunity to be hurt. We sometimes prefer to love our neighbors from a distance, because then we get to dictate the terms of what it is to love one another. We would rather lift up #BlackLivesMatter in prayer because then we don’t need to have an honest conversation about the ways that racism is still deeply embedded in our church. It really doesn’t cost us anything, and we get to feel good about the ways that we are loving our neighbors.

This text from John’s Gospel is one of those passages from scripture that we have heard so many times that we think that we know what it means. But we owe it to ourselves to look a little deeper.  The context of these verses is tremendously important. Jesus has just shared a meal with his disciples. He washed their feet, which would have been filthy from sand and dust. It is an intimate time, the last time that Jesus is gathered together with all of his disciples before his betrayal. Jesus says of the foot washing, “I have set an example for you…that you should also do as I have done to you.” He is saying, “You should demonstrate love and service to one another by literally getting your hands dirty.”

And then Jesus foretells his betrayal. He says to those gathered around him, his closest friends, his confidants, “One of you will betray me.” The disciples are shocked. They look at one another in disbelief. Jesus is their friend, their teacher, their spiritual leader. They simply cannot imagine that this could be true. But Jesus knows that it will be Judas Iscariot, and Judas knows this too, so when Jesus says, “Do quickly what you are doing to do”, Judas runs out of the house. The other disciples still don’t get it, and think that Judas is running out to buy groceries for the Passover meal.

Then Jesus says, “Dear ones, I am only going to be with you for a little while longer, and you will be looking for me, because you have not been paying attention to all that I have been telling you.”   He goes on, “I am going to give you one major commandment.  Only one, because it is probably going to be hard for you to follow. It is to ‘love one another. Just as I have loved you, love one another.’”  Jesus concludes, “Everyone will be able to know that you are my disciples, if you show love to one another.” 

We do not get any commentary in the text about what the disciples are thinking or feeling about this commandment. So I imagine a very human reaction from the disciples regarding this commandment to love. OF COURSE they love each other. They are friends. They probably get annoyed with each other at times, but at the end of the day, they are loyal and loving towards one another.

But Jesus is NOT saying, “Everyone will you know that you follow me by the love that you show to your friends.”  Jesus shared a meal and washed the feet of Judas, the one who betrayed him for 30 pieces of silver. Judas is decidedly not his friend.

Jesus says, “Just as I have loved you, you should love one another…by this, everyone will know you are my disciples, if you have love for one another.”  ONE ANOTHER is not just Jesus’ inner circle of disciples. It is not just those who were open and friendly to the message that Jesus and the disciples shared. 

ONE ANOTHER is not just people who are Christian. Or American. Or churchgoers. Or polite or who are likely to reciprocate that love. The love demonstrated by Jesus is without condition. It is without qualification or justification. It is the sort of love that is demonstrated by washing the feet of the one who would betray you.

This is not the kind of love that we have because we have affection for someone, or a familial bond, or similar interests. It is the kind of love that flows from us because we are first loved by God. But it is hard to love this way. And for this reason, we need an example. God incarnate washes the feet of those closest to him, including the feet of Judas, who will literally turn him over to be killed. Jesus is incarnationally modeling what it is to love. We will at times fall short, but we need not despair, for God is still among us, and within us, and loving us in spite of all of the ways that we betray God and deny God by not seeing the face of Christ in our neighbors. We are loved at the core of our being, because we belong to God. We are made in God’s image. Nothing we can do can ever tear us away from God’s love.

BECAUSE WE ARE FIRST LOVED, WE ARE FREE TO LOVE.  THIS IS VERY GOOD NEWS INDEED.

Let us pray,

God, we give you thanks for your love for us, an expansive love for all of humanity and all of creation. May that same love flow through us as we seek to follow you. Amen.

Come and Have Breakfast...a sermon on John 21:1-19

A.Kumm-Hanson, Santa Cruz, CA 2014

( A sermon preached to the community of Calvary Lutheran Church in Minneapolis, MN on April 10, 2016)

Grace, peace, and mercy are yours from the Risen Christ. Amen.

Today’s Gospel text tells the story of Jesus’ third appearance to his disciples. Jesus’ first appearance was to Mary Magdalene at the empty tomb. His second appearance was to the disciples in a locked room. Today, we hear that Jesus appears on a beach and cooks breakfast for the disciples. It’s a strange story. The disciples have been fishing all night, and haven’t caught anything. They see a man standing on the shore, they do not know yet that it is Jesus, who tells them to put their nets on the right side of the boat and they will find fish.

Their net was suddenly filled with an abundance of fish of many kinds. It was this unexpected catch that makes the disciples think that this stranger on the beach is maybe more than a meddling busybody telling them how to do their jobs. One disciple turns to Peter, and says, “It is Jesus!”  Then in one of the strangest literary asides in all of scripture, we hear that Peter puts on his clothes (he was apparently naked) and jumps into the sea. The other disciples steer the boat back to land, and find a charcoal fire with fish cooking, and fresh bread. And Jesus says, “bring in some of those fish. Come and eat breakfast.” So they sit down and eat together.

This is the most simple and ordinary of things, and yet, so profoundly hopeful. Because this is the second time in John’s Gospel that we hear about a charcoal fire. The night in which Jesus was betrayed and turned over to the religious authorities, there was a charcoal fire burning in the courtyard of the high priest’s house. By the light of that fire on that dark night, Peter denied Jesus three times. He denied knowing him, he denied being a disciple, and he turned his friend over to those who would crucify him.

It is this morning, over another charcoal fire, that Jesus meets Peter again. I think a lot about what Peter might have been feeling upon seeing Jesus again. When the violence started that night, he chose to save his own skin and denied Jesus more than once. We hear that Peter goes out and weeps bitterly, hot tears of shame and regret soaking his face. It is this running and hiding that makes me wonder if Peter was jumping out of the fishing boat to swim to the shore towards Jesus or to hide from him by swimming farther out to sea. The text really isn’t clear.

But if I am completely honest with myself, I would be swimming out to sea to get away from Jesus. It is the most human of impulses to engage in self-preservation. I too would have denied knowing Jesus that night if it would have saved me from the same fate. I HAVE denied knowing Jesus, when it comes to seeing his face reflected in others. We all have. Every time that we think that racism is a problem in another state or city or neighborhood we deny knowing Jesus. Every time that we refuse to make eye contact with that man or woman on the street asking for spare change we deny knowing Jesus. Each time that we draw a line between “us” and “them” whether politically or socially, we deny knowing Jesus, because to know Jesus is to see his face reflected in another. And shame is a powerful motivator, because once we are aware of the ways that we fall short, we want to hide from our brokenness. We want to hide from God. We have mistakenly juxtaposed a loving God who desires reconciliation and relationship with us, with the idea of a hall monitor who is watching our every move, just trying to catch us doing the wrong thing in order to punish us.

In my work as a chaplain, I regularly meet people who believe that they are beyond the reach of God’s love. That for whatever reason, often related to addiction or mental illness, they are not worthy of God’s grace and forgiveness. My patients experience real spiritual and emotional anguish over being “called out” by God upon their death. I don’t have all the answers, but I do share stories of how God desires reconciliation with us, not explanations for all the ways that we think we fall short. And today’s Gospel text is one example that I share with my patients.

When Jesus sees Peter, he doesn’t demand an explanation for what happened that night in the courtyard at the high priest’s house. He doesn’t demand an apology or an admission of wrongdoing on Peter’s part. He provides a meal for the disciples and simply says, “Come and have breakfast.” They come together, over fresh bread and grilled fish, to be filled and sent out.

This is the most simple and hopeful act in the world to me. Jesus seeks Peter out for reconciliation over a shared meal. This story of breakfast is intended to be a parallel to Jesus’ last interaction with Peter over the first charcoal fire. By the light of that fire Peter denied Jesus three times. By the light of this fire, Peter affirms Jesus three times. Jesus took the first step in reconciliation. And God has already taken the first step in reconciling all of humanity with Godself, by coming to earth as Jesus. We are already in right relationship with God because of the reconciliation of the cross.

Furthermore, as Jesus emphasizes to Peter, there is work to do. Jesus tells Peter to “feed my lambs” and “tend my sheep.” This breakfast is more than just about filling the disciples’ stomachs. It is about equipping them for their work of spreading the Gospel to all nations. Jesus tells them that it is going to be hard, but that they are to “Follow me.”

We are just about to eat breakfast with Jesus around this table. We are going to break bread together and drink wine together as we are filled up and sent out for our work as disciples. We eat together each week to remember Christ in ourselves and in one another. We need not hide from Christ, because the reconciliation is already complete. Come and eat breakfast.

The work of chaplaincy and "emotional labor"

A. Kumm-Hanson Minneapolis 2016

I stumbled across something the other day comparing the physical labor to what is called "emotional labor." This idea resonated with me, because of the emotional intensity of chaplaincy. Work of this nature has ramifications for the chaplain's personal life and perhaps an honest appraisal of the toll of emotional labor can contribute to resiliency and health for the chaplain.

Chaplains dwell in the realm of the not-quite-tangible. Our practice involves spiritual and emotional concerns, not physical or social issues to be addressed. Our tools of assessment are not stethoscopes or CT scans, but our ability to listen deeply, our intuition, and our own emotions. In order to assess our patients, we literally use our own souls. We check in with what we are feeling to "take the temperature of the room" (to quote a CPE supervisor). We reflect back the emotions of our patients using mirroring techniques. We do not feel in full the trauma or death or pain of our patients, but we do go into those spaces with them and surround ourselves with that suffering.

Chaplaincy does not involve physical labor like industry, but it involves labor. One of my wise colleagues mentioned that the main difference between a healthcare chaplain and a parish pastor is that while pastors can and do enter into spaces of suffering and dying, they may only do so a few times a year. Chaplains go into the places of deep suffering many times per day. It is emotional labor to center one's self again and set aside whatever might be happening in the next hospital room over or the ER or whatever the chaplain witnessed already that day to be FULLY present with each patient.

It is tremendous emotional labor to be able to walk into a trauma room (I have the privilege of working in a level 1 trauma center) and exude calm. It is human nature to react to extremely stressful situations with "fight or flight" responses. It is a matter of training and experience to be able to observe calmly what is happening, with heightened senses, and be a source of calm and steadiness for others.  Instead of "fight or flight"chaplains "focus and feel." One of my favorite ER nurses said about chaplaincy, "Your physical presence in a trauma room is a rock for the patient, but also for the staff. We know you are going to be calm and we look to you for that strength." It is not physically possible to hold onto all the pain that we take in, but it takes emotional labor to release that pain also. When we come home from that night shift or that day of visiting nursing homes, we often just want to eat and turn our brains off. And in our sleeping or our reading or our netflix binge watching, that pain seeps out slowly like sap from a tree. It hurts a little, but it is necessary to relieve the pressure.

Our conversations with patients are deep. We talk about the sorts of things that many of us would rather ignore. Death and suffering and aging and tough decisions. We are called into ethical dilemmas and to bear witness to patients gasping for air and to offer comfort to family members. We are called to sit with patients so they do not die alone. Sometimes we forget how to have light conversation, because so many conversations in chaplaincy are serious. We might have little tolerance for small talk in our personal lives because we bear witness to the most sacred and painful moments of the human experience. But we want you to know that nothing you might say will scare us, because honestly, we have heard it all before.

We might not want to be social butterflies during our off time or we might want to surround ourselves with a close network of people who "get it." Because it is so hard to explain what we do, why we do it, and how we can possibly continue to do it day in and day out for years. We love our work, but it changes us. We think way more than the average person about the ravages of cancer or the slow death of dementia or the violent randomness of trauma. We are constantly thinking about the lives (and deaths) of our loved ones and we are constantly faced with our own mortality.

We might not always have the emotional energy to be fully present to our own spouses, families and friends at the end of the day. This is the greatest consequence of emotional labor for me. I am an introvert and sometimes I just do not have the emotional reserves to be a wife and family member without time to recharge.

For me, the most important tool in managing the toll of emotional labor is ritual. I symbolically put aside the day by changing out of my work clothes immediately upon returning home. I pray silently in my car that God would hold the concerns of those whom I serve in my work, so that I can let go of them. I visualize all of the trauma and suffering that I hold in my body draining out of me and into the earth. Sometimes I literally lay on the ground and do this. I worship in a faith community that sings its prayers and holds hands together, and I derive strength from the great cloud of witnesses each week. I cry when I need to, because sometimes it is all too much to bear.

Another important part of my resiliency is self-care. I relax HARD on my days off. I sleep a lot. I work out. I eat good food and enjoy good coffee. I try to do creative, generative activities like art and knitting, that allow me to create something tangible. I derive enjoyment from physical activities like yard work and cleaning, because it allows me to use my body instead of my mind. I ask for help when I need it. I love my spouse deeply and enjoy the company of my dogs and their enjoyment of the present moment.

I am not perfect at any of these things, and I still find myself getting worn down at times, but they are disciplines and they get better with time.

Fellow caretakers and chaplains, how do you counteract the toll of emotional labor?

Vigil with the Word: Year C, Fifth Sunday in Lent

The texts for the Fifth Sunday in Lent are:

John 12:1-8
Isaiah 43:16-21
Psalm 126
Phillipians 3:4b-14

I have chosen to focus my commentary on John's Gospel.

Six days before the Passover Jesus came to Bethany, the home of Lazarus, whom he had raised from the dead. There they gave a dinner for him. Martha served, and Lazarus was one of those at the table with him. Mary took a pound of costly perfume made of pure nard, anointed Jesus’ feet, and wiped them with her hair. The house was filled with the fragrance of the perfume. But Judas Iscariot, one of his disciples (the one who was about to betray him), said, ‘Why was this perfume not sold for three hundred denarii and the money given to the poor?’ (He said this not because he cared about the poor, but because he was a thief; he kept the common purse and used to steal what was put into it.) Jesus said, ‘Leave her alone. She bought it so that she might keep it for the day of my burial. You always have the poor with you, but you do not always have me.’

This particular text from John’s Gospel is full of themes that make for fascinating sermons. There are themes of Mary breaking gender roles by touching Jesus. There is a discussion about the extravagance of using a pound of “nard” to wash Jesus’ feet. Which means nothing to us now, perhaps saying something like “took a pound of saffron and put it into pancakes for Saturday morning breakfast” would make more sense. Taking something that is extravagantly expensive and using for the most ordinary task. Then there is a discussion about serving the poor and appropriate use of resources.  But I do not want to talk about that. I want to reflect upon this text in my context as a healthcare chaplain.

This story has the title of “Mary Anoints Jesus.” About a week before Jesus is to die upon the cross, Mary anoints his feet with the most pure and costly oil. Anointing, the ceremonial marking of a person with oil or by symbol alone, is a practice with a long history. We hear in the Hebrew Bible about priests being anointed. The disciples are said to anoint the sick after healing them.  And in this passage, Mary anoints Jesus.

The Catholic church has entirely different connotations of the practice of anointing, so I will not go into those here. But in my practice of ministry, anointing is something that I do frequently. It is part of the commendation of the dying liturgy, something that I find myself doing about once a week, as well as part of a blessing that I give to my patients. Anointing happens in the baptisms that I provide for the sick and dying. Sometimes I use oil, sometimes I use water, sometimes it is just my fingers, smelling faintly of alcohol rub from my hand hygiene ritual. Anointing is a physical representation of a holy manifestation. It is a proclamation of “This moment is sacred. God is here. We are setting aside this moment as something outside the ordinary.” Anointing takes the most ordinary of things, one person touching another, and imbues it with a sense of the holy. It is a mark of God’s presence.

Mary is the only one that sets aside this sacred moment in the bustle of a large group dinner and the disagreement about the use of the nard. I think about how I often make eye contact with a dying patient or their family members as I am anointing someone’s forehead. I tenderly make the sign of the cross and resting my palm on their head, I say, “Well done good and faithful servant. To God you belong.” Quiet words amidst the chaos of a trauma room, the alarms of an ICU or the oppressive air of a nursing facility. An anointing of a moment. God is here.