End of Life

Parents of a very sick child find it painful to imagine what life will be like without their son or daughter. But no matter how much you may try to block such thoughts, they do intrude into your thinking and you can find yourself wondering about what it could possibly be like to continue to live and care for yourself, your spouse/partner, and your other children if your child dies. It is ok to allow yourself to have these thoughts and feelings.

Sometimes well-meaning others will say: “you shouldn’t think like that,” as if we have control over what creeps into our thoughts! It is not unusual for parents to feel guilty or that they are betraying their child when they have such thoughts. But, imagining being without your child is virtually universal as your mind begins to explore what your heart does not want to think about or accept.

When Parents Disagree

Sometimes one parent will want to “try everything” and the other parent will want to move to comfort care. People may mistake this for one parent being more “ready” for their child to die. In fact, readiness is not the issue at all. What is really happening is that each parent is coming to a different answer about what is best as they watch and listen to their child. Up to this point, they have been united in their fight against the cancer, even if the odds of cure or even remission have been poor. Now that the likelihood of controlling the disease is improbable unless extremely aggressive treatment is provided, each parent is grappling with “what do we do?”

These differences in how we each look at life and - very importantly - the afterlife is one of the early signs that how we handle our grief will be different for each parent and for each family member. No one way is the best way, but one way may be better than another for a particular person. Most likely, you have already realized this about yourself and your partner. Still, it can be hard not to feel angry, hurt, annoyed, or frustrated when these differences surface between parents, between you and other members of your family, or between your family and others.

Almost always, it is not because others don’t care but because they lack the words or actions to express how they feel. When we give ourselves time to reflect, we realize that we really did not, in fact couldn’t, have put ourselves in someone else’s shoes no matter how hard we may have tried or how empathetic we wanted to be. Unless we are willing to be flexible and forgiving, the journey through the grief of decision making as well as the grief of loss, can be a lonely one, but only if we let it. Talk to your care team, social worker, psychologist, or spiritual counselor about what you are feeling. These problems occur often and these care providers want to help you and your family give strength to each other.

Siblings

Involving siblings in the end of life of your sick child can help them develop a sense of being needed and feeling important. For siblings, this is a time to make up for or undo some of the thoughts and feelings (of being left out, of not getting as much attention or as many gifts) that they have had since the time of diagnosis, even if they have not shown their distress.

Sharing memories is important for everyone. The memories that everyone wants to have are of things like “Remember the time I gave him a…” or “I think she really liked playing with me.” Doing something as simple as making a card or drawing a picture, blowing up some balloons, playing a board game, or watching TV or a video together can be very helpful for siblings. Let your children talk privately with each other. They may speak more freely among themselves than with you. Above all, help your children build a set of memories that will remind them of their brother or sister not only with love but also with the feeling that they contributed to making the illness and its treatment more bearable.

Many parents are unsure about whether siblings should see the sick child, especially in the ICU, if the child is on a ventilator or is attached to a lot of “tubes.” Experience tells us that siblings need an explanation for the equipment and what it is used for, but they are likely to quickly forget the paraphernalia and just focus on being with their brother or sister. Seeing can be so much better than just imagining what their brother or sister is going through, even if the reality is a difficult one. You can also help them prepare by planning what they want to tell their brother or sister, even if the brother or sister is not able to respond. The only time it would be best NOT to bring a child to see a sick brother or sister is if the sibling does not want to visit. But, even then sometimes talking about what the sibling is afraid of may help overcome his or her fear and distress so that a visit becomes possible. Sometimes, using Skype or sharing some pictures from the hospital can serve as a good bridge to an actual visit. Ask the Child Life Specialist who is working with your ill child for assistance in explaining the disease and its treatment to the brothers and sisters if this hasn’t happened already. The Specialist may have suggestions for age appropriate books for them to read or for you to read to them. If time permits, the Specialist may even be able to stay with your family for a few minutes during the visit.

Grandparents

Grandparents grieve not only for their grandchild but also for their own child – you or your spouse - who is going through such a difficult time. They want to help but often don’t know the best thing to do. One of the most difficult aspects of the time before a child’s death is that there is much uncertainty about exactly what will happen and when. It is hard for you and for them to wait for events to unfold. They know that no one can predict the future, but their anxiety as they watch you as the parent and your child, their grandchild, go through this agonizing experience makes them want to step in and relieve you of this terrible burden. Think of yourself as a parent, and what you would want if your child were going through such a difficult situation. And, try to give them the benefit of meaning well even if their attempts are clumsy.

Help them to understand that while taking on the responsibility for decision making is not possible, there are many other things that they can do that would be of great help to you. For example, if there are other children in the family, spending time with them, keeping them safe and occupied while also answering their questions and comforting them is one of the most important jobs a grandparent can have. Grandparents who are able can also help with the everyday chores that keep a family running so that you, as the parents, are freer to spend time with your dying child. If they can, they might either stay at your home or invite your other children to spend time at their home. If they live elsewhere and are coming to stay with you, decide together where they should stay if your home is too small or inconvenient (e.g., for someone using a walker). If they are far away and cannot be with you, frequent phone calls, emails, texting or other communications to both the sick child and the siblings remind each of the children that they are thought of and loved. Gifts are not necessary, but if they insist, ask them to remember each child equally.

Community

You may already know from your own experience that being the friend of someone who is going through a major life crisis is hard. You may remember hoping that certain topics wouldn’t come up because you weren’t certain that you could say or do anything helpful. Or, you may remember saying something and then thinking you had used the wrong words and your comment had actually been hurtful rather than helpful. Many of your friends are experiencing this as you go through this challenging time.

There are things you want and need to talk about. Some of these things you have likely discussed with your spouse or partner, other family members, or your health care team. But sometimes you want a friend as a sounding board. The harder it is to say something out loud, the more it hurts inside. Being afraid, unsure, and torn apart are all feelings that you as the parent of a dying child may have. It is normal to wonder if you are doing the right thing—after all, not many people have had to make these kinds of decisions. You may find yourself thinking about questions you never imagined even being able to consider like, “which funeral home should we choose?” or “I know they’ll ask about an autopsy, what should I say?” or “can you make an organ donation if you have cancer?”

Well-meaning friends may tell you not to think about such things, but you know that these questions are part of trying to prepare for what you are dreading but know is coming. Let your own feelings be your guide.

Time is very valuable to you now. If friends and neighbors want to help, think about things they can do that will give you more time with your children or spouse. Don’t be afraid to ask. It will make them feel better if they can walk the dog or go to the grocery store, so you can do something more meaningful (including resting when you need to!).

Professionals

This can be an emotionally turbulent time for members of your child’s healthcare team. Some things they may be feeling are a sense of failure, anger, or guilt because they have not been able to cure your child, a sense of loss because you and your child have become important partners in fighting the cancer, and sadness because they have not only cared for, but also cared about, your child. Some members of the team will show these feelings. Some will feel embarrassed because they are not sure what to say. This may seem strange to you since they may have cared for many very sick children before.

Remember that care providers are people with all of the same insecurities and misgivings that everyone else has. Sometimes these feelings lead to brusqueness or withdrawal. They all want things to be different, just as you do. If you feel that a provider is letting his or her negative feelings get in the way of a constructive care plan for your child, speak to that provider directly, if possible, or speak to another member of the team. This is an emotional time for everyone, but all your energies and the team’s energies need to be directed toward providing your child with the best care. It is essential that everyone remember that stopping curative care is not the same as stopping care. In fact, being attentive to your child’s physical, emotional, spiritual, and existential needs as well as thinking, planning, and managing medical and supportive care is a critical way to continue caring for your child, you and your family, and the team as well.

As Passing Approaches

For most children, indeed for most people of any age, the hope for the moment of death is that they will not be alone and that they will not be in pain. There are many decisions parents will need to make as the passing of their child approaches. Some parents:

• keep their child in the hospital through the time of death
• take their child home through the time of death
• return to the hospital to have the support of caregivers there through the final hours or days of their child’s life
• use hospice services in the hospital or a hospice house or at home

Additionally, parents need to think about who will be present as the time of death approaches. Some families:

• have the siblings present
• have grandparents or other family members, friends, or clergy present
• have the child help decide who should be invited to be present
• ask hospice staff to be present, at the hospital or at home