Talking to Kids about Medical Assistance in Dying
In June 2016, the Government of Canada passed a law that made Medical Assistance in Dying (MAID) legal. MAID is an end-of-life choice for people over the age of 18 who are experiencing extreme suffering due to a severe and incurable medical condition. In order to receive MAID, a person must meet a number of very strict guidelines that the Government has defined.
This information has been created to support caregivers and other adults in talking to children and youth about MAID. A number of professionals working in the area of children’s grief, including Dr. Jay Children’s Grief Centre, Canadian Virtual Hospice, and Andrea Warnick Consulting, took part in providing answers to questions that adults and caregivers may have as they explore MAID. Click here to learn more about the Canadian team that collaborated on the creation of these resources.
Canadian Virtual Hospice is currently updating its information on MAID, and new resources for adults and medical professionals looking for more information on the process will be available soon. If you are looking for more information about the MAID process, please visit the Government of Canada website.
Talking to kids about MAID: A role play
For more information and videos, please click on the questions below.
STARTING A CONVERSATION ABOUT MAID
We understand that the concept of MAID can be a difficult one for children and youth to understand, and the thought of talking about the decision to receive MAID with young people may seem difficult. We believe that conversations about illness, death and dying must rely on clear, concrete, and age-appropriate language. Before you introduce the concept of MAID specifically, children need to understand that their person has been diagnosed with an illness that cannot be cured. You want be clear with your child that their person will die from their illness.
If you are looking for support about discussing death and dying with your child, we discuss this in more depth in some of the questions below. You can also access resources from Dr. Jay Children's Grief Centre and KidsGrief.ca.
MAID itself can be explained in the following way: it is a medical procedure where a trained medical professional will administer special drugs to a person living with an incurable illness that will cause their body to stop working and die. Assure your child them that receiving MAID is the person’s choice; that no one, including family, friends or doctors, is forcing the person to use MAID. You will also want to let your child know that the person is able to change their mind at any time during the MAID process. Remember to emphasize that the person will not feel pain or and will not suffer when this takes place. Be sure to share with your child that you have spoken to many doctors about the person’s diagnosis, that you have explored all of the options that are available, and that the person has gone through a process to make sure they can receive MAID.
MAID can be introduced as an opportunity for the person who is sick to feel in control of their dying process and allow them to die in a peaceful way: they are able to make a decision about when and where they will die, and who will be present when they do.
To help your children feel safe and remain trusting of doctors, we recommend sharing with your child that MAID can only be given to an adult (a person who is over 18 years old), and that these drugs are only used for this reason; they are never given to anyone else at any other time for any other reason.
You also need to create space for your child to bring forward information that they have accessed elsewhere about MAID. Remember, MAID is a “hot-topic” being discussed in many different places and involves many different points of view, some of which your child may have explored already. In addition to explaining what MAID is, invite your child to share what they already know about MAID by asking what they may have heard or learned from other sources: friends, radio, the media, and the internet. Do your best to resolve any myths or misunderstandings about what MAID is, why people receive it, how it is administered, and how it is viewed in society.
- Remember that children are grieving
- Helping children understand their loved-one’s choice to have MAID
- Explaining MAID to kids - Part A
- Explaining MAID to kids - Part B
- The importance of language around MAID.
- Fear of the unknown is often worse than the reality of what is happening.
- Access to Internet
- "Telling my kids that their grandfather was going to die."
- MAID and grief
Generally, as children grow, they have more complex understandings of how things work, and they become better able to express their thoughts, concerns and fears. However, there is no specific age at which children require more (or less) information; what children need will be very dependent on their personality. There may be younger children who will want more information about the actual process of MAID (i.e. what drugs are used, how the drugs are given, what they will see and hear, what the person will feel or experience), and there may be some older children or youth who are not interested in knowing more. The examples you use to explain the situation may also need to be more sophisticated. Some children may also have strong feelings about what is fair and unfair, and you may need to have a larger discussion about why this decision is not theirs to make, and their person’s right to make decisions about their own end-of-life.
Whether you are discussing MAID with a young child or teenager, it is important for you to respect how much your child wants to know. Be sure to allow lots of time for them to ask their questions and process what you are saying. Always check in with your child later on to ask if they have any other questions or thoughts that they would like to share. Remember, the basic principles of what is important to communicate in conversations with young people remain the same across all ages and personality types: we must always be honest, provide accurate information and do so in a way that is easy to understand. Deciding what to share with your child is not just about how old they are; it also involves thinking about what your child is like, and you know your child best.
Being honest and clear with children is extremely helpful. The MAID process involves a number of steps, including: the patient initially inquiring about MAID, exploring all available options with their medical team, determining if the person is able to receive MAID, etc.
We recommend starting the conversation with your child when the person completes their written request for MAID, and decides to formally begin their eligibility assessment. We believe this is a good time to talk about MAID because the person has made an informed decision to move forward with the process: at this point, the person has probably inquired about the procedure, talked about it with their doctors, and discussed other care options. This is no longer just an idea or thought, but something you and your family are really, deeply considering.
It is very important to tell your child that just because the person is thinking about MAID and moving forward with the process, this does not mean that it will happen. The doctors that are assessing the person may say that they are unable to receive MAID, the person can change their mind and decide not to use MAID, or, the illness can cause the person to die or lose decision-making capacity before MAID can happen. Remember, if MAID does not happen, have a conversation with your child about why it isn’t happening, and talk openly with them about what might happen instead.
Once MAID is introduced, the next steps should be to explain the MAID process to children so that they have the opportunity to ask questions. You can also involve them in making a plan for how they would like to be involved in the process if and when it does happen.
Before you engage in conversations about MAID with your child, we encourage you to inform yourself as best as possible about the decision and procedure.
We strongly recommend having conversations with professionals, such as doctors or nurse practitioners who know about the process, understand what makes a person eligible, and have experience with MAID. You can access some of these providers through Ontario’s Care Coordination Service (1-866-286-4023). You may also want to connect yourself to organizations whose work centers on helping people understand MAID better, like Dying with Dignity. You can also consult social workers, counsellors or therapists that you trust. These people can help you to consider the facts, talk to you about your concerns, problem solve with you, and support you in getting to a place where you can sit as comfortably as possible in what may be a very uncomfortable situation.
Sometimes, families and friends may not be able to provide neutral and well-informed support about MAID, as they may not have direct experience with the procedure and may have very different emotions or opinions about the process. Even if they cannot support you with accurate information, these people may still be able to provide you with emotional support.
Aside from preparing yourself with an understanding of what MAID is, there is no perfect way to have a conversation about it with your child. Know that it is okay to make mistakes, and these conversations do not only have to happen once. We recommend coming back to your child and revisiting the conversation as often as you and they might need to check in, answer new questions or share more information. It is okay to say that you do not know the answer to a question or concern that they have, but remember to try and find the answer, and to share it with them when you do. If an answer to their question is not possible, make yourself available to sit and wonder with your child about their question. Be as honest as you can, and know that feeling uncomfortable throughout the process is okay. It is okay to fumble your way through the conversation, and to go back to your support network — especially those who are trained in and familiar with death and dying — when you feel unsure about what to do next.
Sharing information about MAID with your child might feel a bit unclear; there is no step-by-step plan or “right” way to do this. The reality is, this is a very difficult conversation to have and your child may throw you some unexpected curveballs with their reaction. But, as long as you are honest, patient, supportive and genuine, your child will understand whatever challenges you face in discussing heavy topics with them. Remember, most kids will not remember the precise way you phrased something, but, they will remember that you were open with them, valued their involvement and feelings, and provided ongoing support.
We strongly believe that nothing should be kept a secret from children; it is important to be clear about the process and what to expect.
Your child needs to understand that their person and their support network (including doctors) have all had conversations about the situation. Reassure your child that their person is aware of what the disease means for them: that they know their illness will cause them to die. You should also communicate that their person is aware of the process, has considered other options, and has made a decision based on all of the important information needed. Remind your child that receiving MAID is legal in Canada, and that it is their person’s choice. No one is forcing them to do make this decision, and they are able to change their minds at any time, right up until the point that the drugs are being given. The level of detail that you share in conversation will depend on the child: their age, their personality, and/or the questions that they ask. You are the person who knows your child best, so recognize their individuality and try your best to give them what you think they may need.
If a child asks a specific question, it means they are thinking about that idea. Overlooking these questions or avoiding them will not stop a child from feeling worried or afraid. Instead, to fill in the blanks, children may develop their own incorrect story about what will happen. By doing this, they can actually increase their anxiety. It is important for caregivers to think of an appropriate way to answer all of the questions that children may have. Again, if you do not have an answer, it is okay to say you do not know, but assure them you will do your best to find the answer for them and will share it when you do. In situations where an answer is not possible, make yourself available to sit and wonder with your child about their question.
It is important that children are given honest and clear information when someone in their life is dying. Whether or not you/your family are considering MAID, you need to be clear about the diagnosis someone has received and describe the prognosis to your child; be clear that the person will die from their illness. If doctors have provided you a timeframe as to when death might be expected, share that with your child. However, remember to clarify that this is a doctor’s best guess; death cannot be predicted accurately and it may happen before or after this timeframe. Explain to your child that although we cannot determine exactly when someone will die with certainty, it is expected that the person will die soon.
We know that talking about a person’s death may feel like you are giving up hope; you and your child may have wished that your person would live a long and healthy life, or that their disease would be cured. Even though this is not possible, you can still make hope part of the conversation with your child: together, you can hope to spend the time you have left with the person in a meaningful way; hope for a peaceful and comfortable death; and hope to honour and remember the person in a special way after the death has happened.
It is extremely important to invite questions in all of your conversations with your child. Show that you are interested in their thoughts and feelings by asking them questions, such as:
- Do you have any questions for me?
- Is this something you would like me to answer or find out about?
- Would it be helpful to meet with the medical person who understands more about this and talk to them directly?
- Would you like me or another adult to be present when talking to this person, or would you like to talk to them on your own?
Ensure that young people have options to receive their information and have their concerns addressed. By giving them options, we keep the lines of communication open.
ANSWERING QUESTIONS & PREPARING YOUR CHILD
It is okay for you to not have answers to all of the questions your child might have. However, it is important for you to always acknowledge the questions they are asking; ignoring or minimizing their questions will communicate that their concerns are not important and can lead them to try and find/make up answers on their own. There is no question that should not be answered; you should try and respond to all of the questions asked in an honest and easy to understand way. If you do not have an answer, be honest and admit that you do not know, but assure them that if there is an answer, you will find it for them. If you need help to answer a question, reach out to your doctor, nurse, grief counsellor or other trusted professional to receive the information you need to share with your children. Of course, your child might have questions that have no answer. In these situations, you may need to simply sit and wonder with children about these ideas.
You should also be prepared to answer the same questions multiple times in conversation with your child. If your child is asking the same questions over and over, this doesn’t mean that you have done a bad job of explaining MAID; repetition is a strategy that children use to make sense of the information being provided to them. Because their brains are still developing, they need more time to process difficult ideas like death and dying. We know it can be difficult to talk about these ideas repeatedly, but know that by engaging with your child when they ask questions, you are supporting them in understanding what will take place.
We want to create space for open and honest communication with children. At every point in the conversation, be curious with your child and ask what they are thinking and feeling. Validate their thoughts, worries, and feelings by acknowledging them and asking where these might come from. Ultimately, communicate to your child that it is okay to feel any and all of their feelings in response to the information you are sharing, but emphasize that the decision lies with the person who is dying.
Again, by sharing information with your child in an open and honest way, you are creating the space for them to share their thoughts and feelings with you. If your child expresses concern that others are not being supportive, validate their feelings and problem-solve with them by thinking up some responses to the questions and statements that others may express. Ensure that these are comfortable for the child, and that a plan is in place for your child to end the conversation if necessary.
- I’d prefer not to talk about this right now/with you.
- This is not a helpful conversation for me to have, but if you feel like you need/want to talk about this, perhaps you should talk to (name individual).
Remember, children need to be supported in advocating for and protecting themselves when conversations feel challenging or unhelpful.
It is important to follow your child’s lead when discussing MAID with then. You can clarify how MAID is different than both murder and suicide if your child is wondering about this however, if this is not a curiosity for your child, it is not something that needs to be prioritized. If your child is wondering about these differences, explain that in the context of MAID, the person knows that they are going to die from their illness. The MAID process provides a person the ability to make an informed and clear decision about how and when they die, and to receive trained, medical support to make sure that their death is comfortable and peaceful. This is very different than a murder, where a life is unfairly, violently and/or unexpectedly ended by another person. It is also different than suicide, in which a person makes a choice to end their own life, often suddenly and unexpectedly, even if they have not been diagnosed with an illness that cannot be cured.
We understand that it may be difficult to think about your child being present when someone dies. We believe strongly that, as long as the person dying is open to it, there is no reason to prevent a child from being present. That said, it is very important that you give the child the opportunity to express what they hope for, want and need as you and your family prepare for MAID. You can support your child in making a decision by asking questions in a clear way. Start by giving them accurate and clear information about what MAID is, what will happen and who will be present in the room when it takes place (see question below). You can follow up this discussion by asking direct questions about their desires:
- Do you think you would like to be there when this takes place?
- Would you like to have someone/something in the room with you to support you?
- Would you like to be close-by when it is happening (i.e. in the house/hospital but not in the room)
- Would you like to have someone with you on the day to support you if you are not in the room?
- Would you like to offer something to be in the room with your person even though you are not in the room?
- Would you like to be somewhere else? Where would you like to be and who would you like to be with you?
Be clear about where you will be when MAID takes place, and explain that your decisions are yours alone. Assure your child that they do not need to make the same decision as you or be present to support you. It is also important to reassure your child that they can change their mind at any time and that the conversation can be ongoing until the time that MAID takes place. Remind them that you want them to feel comfortable and safe with whatever decision they make and that no one, including you, will be upset with their decision.
In situations where a child cannot be present in the room, give them the opportunity to spend time with their person prior to and following MAID. You can also invite them to write letters, draw artwork, buy or pick an item to be in the room with their person so that they can feel they are present without being physically in the space. Sometimes family and loved ones are not able to be present because of physical distance. In these situations, consider giving children and teens the option to be present if they wish through technology like FaceTime or Skype. However, it is important to ensure they have support of people nearby before, during and after MAID has occurred. Ultimately, children need a menu of options about how they can participate, so that they can feel included regardless of their wishes.
Where MAID takes place is a very personal choice, and it can take place in many different locations. Usually, the medical professionals will come to the person’s home to provide MAID, but it can also be done in hospital, in a hospice or long-term care facility. Each person and family will set up their space in a way that feels most comfortable for them. For some, there may be music playing in the background, others may pray or chant, and others still may prefer quiet. The space itself can be set up in whatever brings comfort to the person receiving MAID. Having a discussion about what your child might see and hear is an opportunity to speak with them about what decisions have been made by their person.
It is important for you to consult with the clinical team to learn exactly what will happen in the space when MAID is administered. Generally, the procedure follows the same step-by-step process. If your child is interested in knowing more about what will take place in the room, below is a simple, age-appropriate description of the MAID process. For individuals that are receiving MAID by intravenous, the process generally works as follows:
- The nurse, doctor or nurse practitioner who is administering the medications will arrive at the location to set up the intravenous lines either on the day of the procedure or the night before. There two intravenous bags set up in the space. These IV’s are connected to the person’s bloodstream. The medical professional will lay out all of the medication in a specific order, and these will usually be kept close to the patient’s bedside. You may want to use this discussion as an opportunity to remind your child that these drugs are very specialized and are used only for this procedure.
- Before the doctor or nurse practitioner gives any of the drugs to the person, they will ask the person if he/she still wants to have MAID. The person is always allowed to change their mind at this time. If the person agrees, the process will continue.
- The first drug that is given is a sedative drug. The drug will be given to the person through the intravenous line and it will enter into the person’s bloodstream. This medication is used to make the person fall into a very heavy sleep. The sleep is so heavy that the person is no longer aware of their surroundings. They will be very comfortable and peaceful in this state. Sometimes, the person is in such a relaxed state that their arms or legs may move suddenly, but they do not feel it. The person can also snore because the muscles in their mouth and throat are very relaxed.
- The next drug that will be provided will cause the person’s brain to slow down. When this drug is given, the person becomes unconscious; they will not respond to voices, sounds, or activity happening around them. You can share with your child that sometimes this medication stops the person’s lungs or heart, and causes the person to die. When this drug is being given, the person’s colour may change and they become pale. The person will not move after this drug is given.
- The last medication that is given blocks the brain from sending messages to the person’s organs; it stops the heart from pumping blood and stops the lungs from breathing. If they have not already died, the person will die shortly after this medication has been given.
In total, the whole procedure will usually take only a few minutes from start to finish if the person is using the IV method for MAID. If the person chooses to receive MAID using the drink form and take the medication by mouth, the process works in the same way, but the medications themselves are different and take longer to work, sometimes even an hour. If you are looking for more information on this method of MAID, talk with your medical professional.
The process itself will be very peaceful for the person and those in the room; you can assure your child that they will not see or hear the person suffer or experience any pain. It will be very similar to watching someone fall asleep. Be sure to emphasize however, that the person will not be asleep, but will have died.
While the doctor or nurse is providing the drugs, family members and friends can be with the person in any way they choose to be; people in the room are able to hug them, hold them, and touch their hands. You will want to prepare your child for all of the different emotions that they may experience in the room: some people may be crying, some people may wail, others may be very quiet. Assure your child that all of these emotions are natural and okay to feel when someone has died.
Regardless of how death happens, we rely on the same principles when explaining the process to young people. Tell your child that when someone dies, their physical body is no longer needed and therefore, shuts down. The organs in the body (heart, lungs, stomach, brain) stop working, and the body no longer breathes, smells, sees, or tastes, and never will again. The person no longer feels anything, including pain or discomfort. When MAID has occurred, and all of the drugs have been administered to the person, the doctor or nurse practitioner will make sure that the person has died and that there are no signs of life. They do this by listening for a heartbeat using a stethoscope and checking their pulse. They may also check that the person’s brain has stopped working by looking at the person’s eyes to make sure they are still and do not respond to light. The medical professional will then leave the room or space to complete their paperwork, and will allow family and friends some time to be with the person.
It is important to address the plan with young people around whether and how they would like to spend time with the body after the person has died. You can provide some options to your children, such as: reading a poem or short story, giving them a token of your love, sitting quietly and remembering some shared times together, giving a kiss goodbye.
You will also want to discuss the plan to have the body removed from the room; describe who will do this and how it will take place. Remember to mention that even though the body has died and the person is no longer physically with us, we can keep the memory of the person close to us by thinking and talking about them, or doing things that they enjoyed.
Do your best to be as curious as you can with your children, and wonder with them about what they believe happens to someone after they die. Share any spiritual, cultural or religious teachings that are relevant to your family. This is an opportunity to discuss funerals, celebrations of life or other mourning rituals that will take place.
CREATING AND MAINTAINING A SAFE & OPEN SPACE
As we mentioned in previous sections, it is crucial that we validate all of our children’s feelings when they are anticipating or grieving a death. Grief is a complex mixture of many emotions; anger and/or fear are normal and healthy responses for all of us. If your child becomes upset when talking about MAID, try to continue the conversation by asking what is creating that response for them. Do your best to model grief with them by honestly describing how you feel about the decision being made. Reassure them that their feelings are normal, but provide information to clarify any myths or misconceptions that may be contributing to the anger or fear.
Know that helping children to understand MAID will likely take more than one conversation. We encourage you to create a safe space, both physically and emotionally, for children to express all of their feelings:
- Sit with the child to have these conversations, away from other distractions;
- Provide comfort through physical actions (hugs, sit them in your lap, etc.) and verbal cues (It’s okay to feel angry/I understand that this makes you afraid, etc.);
- Offer them time to take a break and come back to the discussion at a later time; or,
- Have the child participate in something that is soothing like reading, drawing or listening to music after a conversation takes place.
If your child is having a difficult time engaging in the conversation, we first invite you to gently ask about what feelings are causing them to shut down. Remember to validate all of their feelings as they process the information being shared. Next, it might be helpful to explain why you feel you need to have the conversation. Explain that you feel the information is important, and you want to give them all the information they need so that they can make the best decision that they can for themselves. You can allow them to direct the conversation more by asking what information they would like to receive:
- Would you like to know when MAID will happen?
- Would you like to know how MAID happens?
- Would you like to know how you can be involved?
Reassure the child that it is okay that they don’t feel like having this conversation right now, but that you are open to revisiting it with them at a later time.
We believe that children have the right to story-tell in ways that feel most comfortable for them. Some children will want to share the full story with others in their life, and other children would rather keep some or all of the details private. It is important to know and assure your child that both are appropriate responses. Some children will want to tell the truth and be upfront about the cause of death: that their person decided to receive medical assistance in dying because they wanted to choose the time, place and way to die with a clinician. Some children will choose to say that their person died of the illness they had (i.e. cancer, ALS, etc.). Others will simply share that they do not want to talk about what happened. You can present these three options to your child, and ask them in a clear and direct manner what they feel comfortable sharing. It may also be helpful to identify with your child which people may be supportive when they know more of the story, and which people are not as close and do not need the same kind of access to their story. Check in with your child often about how they are feeling about storytelling, and recognize that their need or desire to story tell with people may change over time.
There is no one-size fits all process for checking in with children about MAID, death and/or grief. Every child is going to have a unique response to the information that is shared with them and every child will need different things from their caregivers in the time leading up to and following MAID. While we cannot offer a specific frequency for checking-in, we recommend checking in with your child every so often to explore what they might need. Important questions to ask your child how they feel about you checking-in:
- Am I checking in too often? Am I not checking in often enough?
- Would you like more time to talk with me about this?
- Is there someone else you would like to talk to about this?
We believe that if you have been open, honest, curious and validating in conversations and interactions with your child, they will feel able to come to you to express their feelings, anxieties, confusion and concern. Remember that if your child was young when MAID occurred, it is important to check in even years down the road, as their understanding of the death will change as they grow and develop.
Based on all of our years of research and practice, we know that grief is a unique experience for every single individual, including adults and children. It is impossible to reliably predict what your child’s grief experience will be like after MAID. What we do know, however, is that when children are given an opportunity to develop emotional language, adaptive coping strategies, and a diverse network of support, they are able to develop resiliency and grieve in a healthy way. No matter how your child experiences MAID — whether they are in agreement or disagreement, find it upsetting or comforting, are present or not present — the fundamental principles around what supports healthy grieving remain the same.