How We Do It

Professionals are not immune to subscribing to the myths listed in Table 1 and “are often inhibited by their anxieties about saying or doing the wrong thing and causing lasting emotional damage.”¹⁰ However, by communicating openly and honestly and including children/youth, informed care team members can offer many supportive interventions that a family can benefit from during the time leading up to and following the death. These interventions foster the best outcomes when they are offered early on in the palliative trajectory.^{[11] and [12]}

Our Setting

The Temmy Latner Centre for Palliative Care (TLCPC) at Mount Sinai Hospital in Toronto is one of Canada's largest academic palliative care programs, incorporating a children's center, the Max and Beatrice Wolfe Children's Centre, which provides pediatric palliative care and children's grief programs (Dr. Jay Children's Grief Program). Our children's center supports children, youth, and their families when a family member is dying or has died. This support includes Canada's first Camp Erin, an overnight children's grief camp. Children are referred to these programs for grief counseling by our center's palliative care physicians, local palliative care units and hospices, and a wide variety of community agencies. Children's grief programs are very limited in our large urban setting, as is true in most communities across North America. We have four counselors devoted to child and youth grief support services.

What We Do

Action 1: Intake and Assessment

The center has an open referral policy, accepting referrals from any source, including self-referrals, regardless of the nature of the illness or cause of death.

An intake phone call, lasting between 15 and 60 minutes, is made to the family to assess their needs and to provide psychoeducation and relevant resources. Based on our belief that early intervention provides the most supportive opportunities, families in which the patient is dying are prioritized.

As a result of demand for services being greater than our resources, children and their families bereaved at the time of referral are provided with an initial psychoeducational visit and assessment and then placed on a waiting list if further counseling is deemed appropriate.

In either case, the initial assessment often reveals that what the family needs most is psychoeducation about child/youth grief, communication and development, and reassurance about the benefits of the things they are already doing. Caregivers are provided with educational materials, including a copy of the center's publication Living Dying: A Guide for Adults Supporting Grieving Children and Teenagers,¹¹ a list of Web resources, books, and brochures written by us. All these resources are also available to professionals.

Action 2: Counseling

If further assessment and counseling are warranted, children are seen individually, with siblings and/or with their family depending on the needs and circumstances. The bulk of our counseling services are brief, typically lasting three or four sessions in total. However, more intensive counseling is available on a case-by-case basis, with progress and needs being assessed every four sessions. Counseling techniques including expressive arts, crafts, therapeutic play, and activities are used to support children/youth and families in the grieving process. Families are able to contact counselors when issues arise for them, which often occurs around anniversaries, holidays, other important events, and as children/youth develop and experience their grief in a new light.¹³

The center's model is resiliency-based, nonpathological, and family-centered. Caregivers are empowered as primary and ongoing sources of support and dominant role models for the grieving child and youth in their care. In addition to conversations with their counselor, families are offered monthly opportunities forcaregiver education and peer support and various therapeutic group activities for children/youth.

Action 3: Complex Cases

Referrals to secondary children's mental health services are facilitated for families with needs beyond the scope of our supportive grief services, including children with indicators of complicated grief who need more intensive counseling. For children with severe psychological distress, referrals are made to a pediatric psychiatrist with special interest in this area.

According to Rando,¹⁴ there are a number of forms of unresolved or complicated grief which can overlap, and each has components of denial or regression. These include feelings of grief and mourning being absent, an inhibition of some of the normal symptoms of grief, putting grief on hold for any reason, and when there is a dependent or ambivalent relationship with the deceased. Two common manifestations are extreme anger and extreme guilt.

Some types of death that place children/youth at risk for complicated grief include a sudden or unexpected death, a violent death, a death involving mutilation, the death of a child, and death as the result of a prolonged illness. Also included is complicated loss associated with social stigma such as imprisonment, suicide, AIDS, abortion, severe mental illness, serious family dysfunction, or addiction. However, the presence of these factors does not necessarily lead to complicated grief. Complicated loss is known to be mediated by personal, familial, and social factors that contribute to relative risk and resilience.

What We Say

Engaging a family early in the palliative journey allows greater opportunity to prepare children/youth and prevent possible negative outcomes.^{[6] and [15]} Christ and Weisenfluh¹⁶ tell us that the greatest need for support is found during the weeks leading up to the death. A large component of the early intervention we offer is age-appropriate psychoeducation to help caregivers conceptualize how their child/youth may be experiencing and understanding what is happening. Caregivers who anticipate some of the thoughts, feelings, questions, and struggles that their child/youth might face are empowered and children benefit.

The 3 Cs

1. Can I catch it?
2. Did I cause it?
3. Who is going to take care of me?

Julie Stokes¹⁵ was able to summarize what children/youth think and worry about most when a family member is dying into three questions. We have coined these three questions the “Three Cs”: Catch, Cause, and Care.

Catch

The first “C” relates to the fear expressed by children/youth that they could catch the illness. Melanie, a 7-year-old, explained that she would have a brain tumor soon because her sister Sarah, who was dying of brain cancer at the time, “is my sister and we lived in the same room always.” If such concerns go unexplored and children are not given clear information, caregivers may see children/youth distance themselves from their ill family member, develop a fear that they and the rest of their family will get sick and die as well, and other implications.¹⁷

The weight of language in a child's understanding of illness, death, and dying cannot be emphasized enough.¹¹ More often than not, indirect and generic language used by adults, such as referring to someone as being “sick” or “not doing well,” complicates a child's ability to differentiate between the common cold or flu and life-threatening diseases and illnesses. “My mom was sick and she died; therefore, all people that are sick die.” Many adults believe that their child is too young to understand what cancer means. While it is true that children may not be able to grasp the complex medical information about the illness, they are able to understand a great deal more than they are given credit for, and using the word “cancer” gives them a way to distinguish their dying family member's illness from others such as the common cold or flu.

Cause

The second “C” arises from the common thought in children/youth that they somehow caused or hastened the death and/or prevented the recovery of their family member. Cause is one of the five accepted subconcepts of the developmental understanding of death⁸ and among the last to be mastered due to its complexity and abstract components. As she sat under her pink bunk-bed, 5-year-old Tayah told her counselor that she had cancer when she was a little girl and then her mother got it after her. Eleven-year-old Joshua shared, “I just have to get to that cancer walk thing. If I can do that, then my mom will get her cure. That is what they said on TV you know, to walk for the cure!”

There are a number of ways that children/youth may try to own responsibility for the illness and death of their family member. They may believe that things they thought or did not think, did or did not do, felt or did not feel were directly related to the cause, progression, or death of the family member.¹⁸ These thoughts are especially strong for children in the magical thinking stage of development. In Piaget's theory of cognitive development, magical thinking dominates the preoperational stage (2–7 years old) and describes thinking disconnected from the laws of nature.¹⁹ Special attention should be given to assuring children in this age group that they are in no way responsible for the illness or death of their family member, as well as to avoid minimizing these fears and beliefs of responsibility.^{[6] and [17]} This point will need to be readdressed often, with frequent reassurance that they are not responsible.

Care

The third “C” includes concerns about what will become of them and who will take care of them as well as the desire to help care for the dying person. While it is commonly thought that this fear is felt more significantly by children/youth who have a dying or deceased parent, siblings of dying or deceased children appear to be just as challenged. They will experience the same break in their belief that their family member will always be with them.²⁰ Also, many children worry that their surviving parent will be incapacitated and unable to care for them after the death. Four-year-old Alex looked up at his mom one night and said, “You are dying in front of me. I'm scared. Who is going to turn out the light, I can't reach it, and who will cook for me, I can't turn on the stove?” This fear extends beyond who will take over the practical parental roles, to the worry that the child or youth will be orphaned.

Children will often connect their own experience to what they have seen or heard and fear the worst.^{[18] and [21]} Orphans are ever present in children's literature and movies and are often depicted as abandoned to fend for themselves. For many, this fear is grounded in the reality that their current caregiver may not have been emotionally able to address issues of custody or guardianship or that they do not have anyone willing or able to care for the kids after their death. As Alice lay on her bedroom floor writing notes to her dying mother in the critical care unit, she shared, “My mommy and my daddy are dying … they is both going to die,” convinced that this was the truth. Alice's dad is healthy and has been for all of Alice's life.

“Three Cs” and Adolescents

Occasionally, adults have questioned the relativity of the “Three Cs” to our adolescent (ages 13–18) population. Our clinical work has led us to conclude that indeed the “Three Cs” are very real in the lives of the youth we work with. An example of this in relation to “Catch” is Sarah, who expressed distress over the familial traits of breast cancer and the likelihood that her fate will one day mirror that of her mother, aunt, and grandmother.

With regard to “Cause,” we hear youth talk about the relationship between the quality of their caregiving efforts and the death of their family member. Many youth express a feeling that if they had done a better job caregiving, their family member would not have died, especially for youth in primary caregiving roles and single-parent homes.¹⁴

When looking at “Care,” youth are impacted by their ability to think abstractly and to experience the loss of what is yet to come. Youth understand that they depend on their caregivers for much more than their practical needs. Joshua talked to his counselor about the loss he was feeling as he searched for employment without his father's help and network. He shared, “If my Dad was here, he would know someone; he would know what I should do.” Important to note is that age is not always the best predictor of cognitive capacity as we see school-aged children grapple with many of the thoughts more commonly expressed by our older population.

Whether or not a caregiver has already spoken with a child about a diagnosis and prognosis, it is helpful to get him or her to consider what the child may be thinking about. Using the foundation of the “Three Cs” will help caregivers understand the importance of open, honest, and concrete communication, as well as feel better equipped to provide their child/youth with support.

Teaching Parents How to Communicate with Their Children

It is difficult for a parent to witness the reaction of a child/youth to such difficult information. This challenge cannot be questioned. However, the benefit to children/youth of having their parents lead or participate in communications and psychoeducation about the cancer and terminal prognosis is clear.^{[6], [7], [8] and [12]} Caregivers are able to clarify assumptions and misperceptions while modeling that it is permissible to talk about cancer and dying together.

Medical staff can facilitate opportunities for such family communications by including children in family meetings and discussions with medical staff and by explaining complex concepts to family members in a simple, concrete fashion. Caregivers often need professionals to welcome and encourage the children to be included. Staff can reassure parents that although they may fear that their children's inclusion will be harmful, on the contrary, inclusion is helpful.

Getting Started

1 Ask what the child/youth understands about the disease/illness.
2 Fill in any gaps in their understanding and explain the treatments that were given.
3 Explain cancer treatments such as chemotherapy, radiation, and surgery.
4 Ask the child/youth what he or she thinks is going to happen.
5 Explain in terms that can be understood that the family member will die.

In any conversation with children/youth about such complex and consequential material, follow their lead in regard to the amount of detail they want. Conceptualize it as an onion: You will want to provide the child/youth with clear and simple language describing basic information. Beyond that, peel off subsequent layers as the child/youth requests more information, always using clear and concrete language. The child/youth may be uncomfortable with the material and may attempt to change the topic. This is a healthy coping mechanism; the average child is quite good at knowing when he or she has reached the limit of their emotional attention span. Allow the child to take the conversation in a different direction, periodically checking to see if he or she is ready to come back to the topic at hand. The benefit of starting this course of conversation early is that it allows children/youth the chance to receive information in small, digestible pieces and the time to process and integrate the information to begin to make meaning of it.

Summary

“What about the kids?” is a dominant and consuming question for caregivers supporting children/youth around the dying and death of a family member. The concerns and fears encompassed in this question can overwhelm caregivers as they put vast amounts of energy into trying to protect children/youth from the suffering and pain that awaits them. Perhaps the hardest lesson these caregivers must learn is that they cannot protect their child/youth from the death any more than they can stop the death from happening. Instead, what is needed most from children/youth is to be included, prepared, and provided with a safe place for emotional expression. Children, as well as adults, will grieve in their own specific way, mediated by their developmental level, circumstances of the illness and death, and protective factors available to them. Providing comprehensive, whole-person care to palliative patients with children/youth in their care ought to include psychoeducation and support for all members of the family. Our communities' bereaved children/youth will be impacted by the death of their family members in countless ways throughout their lives. As professionals caring for people who are dying, we have a responsibility to mediate this impact to the best of our ability.

Professionals are not immune to subscribing to the myths listed in Table 1 and “are often inhibited by their anxieties about saying or doing the wrong thing and causing lasting emotional damage.”¹⁰ However, by communicating openly and honestly and including children/youth, informed care team members can offer many supportive interventions that a family can benefit from during the time leading up to and following the death. These interventions foster the best outcomes when they are offered early on in the palliative trajectory.^{[11] and [12]}

Our Setting

The Temmy Latner Centre for Palliative Care (TLCPC) at Mount Sinai Hospital in Toronto is one of Canada's largest academic palliative care programs, incorporating a children's center, the Max and Beatrice Wolfe Children's Centre, which provides pediatric palliative care and children's grief programs (Dr. Jay Children's Grief Program). Our children's center supports children, youth, and their families when a family member is dying or has died. This support includes Canada's first Camp Erin, an overnight children's grief camp. Children are referred to these programs for grief counseling by our center's palliative care physicians, local palliative care units and hospices, and a wide variety of community agencies. Children's grief programs are very limited in our large urban setting, as is true in most communities across North America. We have four counselors devoted to child and youth grief support services.

What We Do

Action 1: Intake and Assessment

The center has an open referral policy, accepting referrals from any source, including self-referrals, regardless of the nature of the illness or cause of death.

An intake phone call, lasting between 15 and 60 minutes, is made to the family to assess their needs and to provide psychoeducation and relevant resources. Based on our belief that early intervention provides the most supportive opportunities, families in which the patient is dying are prioritized.

As a result of demand for services being greater than our resources, children and their families bereaved at the time of referral are provided with an initial psychoeducational visit and assessment and then placed on a waiting list if further counseling is deemed appropriate.

In either case, the initial assessment often reveals that what the family needs most is psychoeducation about child/youth grief, communication and development, and reassurance about the benefits of the things they are already doing. Caregivers are provided with educational materials, including a copy of the center's publication Living Dying: A Guide for Adults Supporting Grieving Children and Teenagers,¹¹ a list of Web resources, books, and brochures written by us. All these resources are also available to professionals.

Action 2: Counseling

If further assessment and counseling are warranted, children are seen individually, with siblings and/or with their family depending on the needs and circumstances. The bulk of our counseling services are brief, typically lasting three or four sessions in total. However, more intensive counseling is available on a case-by-case basis, with progress and needs being assessed every four sessions. Counseling techniques including expressive arts, crafts, therapeutic play, and activities are used to support children/youth and families in the grieving process. Families are able to contact counselors when issues arise for them, which often occurs around anniversaries, holidays, other important events, and as children/youth develop and experience their grief in a new light.¹³

The center's model is resiliency-based, nonpathological, and family-centered. Caregivers are empowered as primary and ongoing sources of support and dominant role models for the grieving child and youth in their care. In addition to conversations with their counselor, families are offered monthly opportunities forcaregiver education and peer support and various therapeutic group activities for children/youth.

Action 3: Complex Cases

Referrals to secondary children's mental health services are facilitated for families with needs beyond the scope of our supportive grief services, including children with indicators of complicated grief who need more intensive counseling. For children with severe psychological distress, referrals are made to a pediatric psychiatrist with special interest in this area.

According to Rando,¹⁴ there are a number of forms of unresolved or complicated grief which can overlap, and each has components of denial or regression. These include feelings of grief and mourning being absent, an inhibition of some of the normal symptoms of grief, putting grief on hold for any reason, and when there is a dependent or ambivalent relationship with the deceased. Two common manifestations are extreme anger and extreme guilt.

Some types of death that place children/youth at risk for complicated grief include a sudden or unexpected death, a violent death, a death involving mutilation, the death of a child, and death as the result of a prolonged illness. Also included is complicated loss associated with social stigma such as imprisonment, suicide, AIDS, abortion, severe mental illness, serious family dysfunction, or addiction. However, the presence of these factors does not necessarily lead to complicated grief. Complicated loss is known to be mediated by personal, familial, and social factors that contribute to relative risk and resilience.

What We Say

Engaging a family early in the palliative journey allows greater opportunity to prepare children/youth and prevent possible negative outcomes.^{[6] and [15]} Christ and Weisenfluh¹⁶ tell us that the greatest need for support is found during the weeks leading up to the death. A large component of the early intervention we offer is age-appropriate psychoeducation to help caregivers conceptualize how their child/youth may be experiencing and understanding what is happening. Caregivers who anticipate some of the thoughts, feelings, questions, and struggles that their child/youth might face are empowered and children benefit.

The 3 Cs

1. Can I catch it?
2. Did I cause it?
3. Who is going to take care of me?

Julie Stokes¹⁵ was able to summarize what children/youth think and worry about most when a family member is dying into three questions. We have coined these three questions the “Three Cs”: Catch, Cause, and Care.

Catch

The first “C” relates to the fear expressed by children/youth that they could catch the illness. Melanie, a 7-year-old, explained that she would have a brain tumor soon because her sister Sarah, who was dying of brain cancer at the time, “is my sister and we lived in the same room always.” If such concerns go unexplored and children are not given clear information, caregivers may see children/youth distance themselves from their ill family member, develop a fear that they and the rest of their family will get sick and die as well, and other implications.¹⁷

The weight of language in a child's understanding of illness, death, and dying cannot be emphasized enough.¹¹ More often than not, indirect and generic language used by adults, such as referring to someone as being “sick” or “not doing well,” complicates a child's ability to differentiate between the common cold or flu and life-threatening diseases and illnesses. “My mom was sick and she died; therefore, all people that are sick die.” Many adults believe that their child is too young to understand what cancer means. While it is true that children may not be able to grasp the complex medical information about the illness, they are able to understand a great deal more than they are given credit for, and using the word “cancer” gives them a way to distinguish their dying family member's illness from others such as the common cold or flu.

Cause

The second “C” arises from the common thought in children/youth that they somehow caused or hastened the death and/or prevented the recovery of their family member. Cause is one of the five accepted subconcepts of the developmental understanding of death⁸ and among the last to be mastered due to its complexity and abstract components. As she sat under her pink bunk-bed, 5-year-old Tayah told her counselor that she had cancer when she was a little girl and then her mother got it after her. Eleven-year-old Joshua shared, “I just have to get to that cancer walk thing. If I can do that, then my mom will get her cure. That is what they said on TV you know, to walk for the cure!”

There are a number of ways that children/youth may try to own responsibility for the illness and death of their family member. They may believe that things they thought or did not think, did or did not do, felt or did not feel were directly related to the cause, progression, or death of the family member.¹⁸ These thoughts are especially strong for children in the magical thinking stage of development. In Piaget's theory of cognitive development, magical thinking dominates the preoperational stage (2–7 years old) and describes thinking disconnected from the laws of nature.¹⁹ Special attention should be given to assuring children in this age group that they are in no way responsible for the illness or death of their family member, as well as to avoid minimizing these fears and beliefs of responsibility.^{[6] and [17]} This point will need to be readdressed often, with frequent reassurance that they are not responsible.

Care

The third “C” includes concerns about what will become of them and who will take care of them as well as the desire to help care for the dying person. While it is commonly thought that this fear is felt more significantly by children/youth who have a dying or deceased parent, siblings of dying or deceased children appear to be just as challenged. They will experience the same break in their belief that their family member will always be with them.²⁰ Also, many children worry that their surviving parent will be incapacitated and unable to care for them after the death. Four-year-old Alex looked up at his mom one night and said, “You are dying in front of me. I'm scared. Who is going to turn out the light, I can't reach it, and who will cook for me, I can't turn on the stove?” This fear extends beyond who will take over the practical parental roles, to the worry that the child or youth will be orphaned.

Children will often connect their own experience to what they have seen or heard and fear the worst.^{[18] and [21]} Orphans are ever present in children's literature and movies and are often depicted as abandoned to fend for themselves. For many, this fear is grounded in the reality that their current caregiver may not have been emotionally able to address issues of custody or guardianship or that they do not have anyone willing or able to care for the kids after their death. As Alice lay on her bedroom floor writing notes to her dying mother in the critical care unit, she shared, “My mommy and my daddy are dying … they is both going to die,” convinced that this was the truth. Alice's dad is healthy and has been for all of Alice's life.

“Three Cs” and Adolescents

Occasionally, adults have questioned the relativity of the “Three Cs” to our adolescent (ages 13–18) population. Our clinical work has led us to conclude that indeed the “Three Cs” are very real in the lives of the youth we work with. An example of this in relation to “Catch” is Sarah, who expressed distress over the familial traits of breast cancer and the likelihood that her fate will one day mirror that of her mother, aunt, and grandmother.

With regard to “Cause,” we hear youth talk about the relationship between the quality of their caregiving efforts and the death of their family member. Many youth express a feeling that if they had done a better job caregiving, their family member would not have died, especially for youth in primary caregiving roles and single-parent homes.¹⁴

When looking at “Care,” youth are impacted by their ability to think abstractly and to experience the loss of what is yet to come. Youth understand that they depend on their caregivers for much more than their practical needs. Joshua talked to his counselor about the loss he was feeling as he searched for employment without his father's help and network. He shared, “If my Dad was here, he would know someone; he would know what I should do.” Important to note is that age is not always the best predictor of cognitive capacity as we see school-aged children grapple with many of the thoughts more commonly expressed by our older population.

Whether or not a caregiver has already spoken with a child about a diagnosis and prognosis, it is helpful to get him or her to consider what the child may be thinking about. Using the foundation of the “Three Cs” will help caregivers understand the importance of open, honest, and concrete communication, as well as feel better equipped to provide their child/youth with support.

Teaching Parents How to Communicate with Their Children

It is difficult for a parent to witness the reaction of a child/youth to such difficult information. This challenge cannot be questioned. However, the benefit to children/youth of having their parents lead or participate in communications and psychoeducation about the cancer and terminal prognosis is clear.^{[6], [7], [8] and [12]} Caregivers are able to clarify assumptions and misperceptions while modeling that it is permissible to talk about cancer and dying together.

Medical staff can facilitate opportunities for such family communications by including children in family meetings and discussions with medical staff and by explaining complex concepts to family members in a simple, concrete fashion. Caregivers often need professionals to welcome and encourage the children to be included. Staff can reassure parents that although they may fear that their children's inclusion will be harmful, on the contrary, inclusion is helpful.

Getting Started

1 Ask what the child/youth understands about the disease/illness.
2 Fill in any gaps in their understanding and explain the treatments that were given.
3 Explain cancer treatments such as chemotherapy, radiation, and surgery.
4 Ask the child/youth what he or she thinks is going to happen.
5 Explain in terms that can be understood that the family member will die.

In any conversation with children/youth about such complex and consequential material, follow their lead in regard to the amount of detail they want. Conceptualize it as an onion: You will want to provide the child/youth with clear and simple language describing basic information. Beyond that, peel off subsequent layers as the child/youth requests more information, always using clear and concrete language. The child/youth may be uncomfortable with the material and may attempt to change the topic. This is a healthy coping mechanism; the average child is quite good at knowing when he or she has reached the limit of their emotional attention span. Allow the child to take the conversation in a different direction, periodically checking to see if he or she is ready to come back to the topic at hand. The benefit of starting this course of conversation early is that it allows children/youth the chance to receive information in small, digestible pieces and the time to process and integrate the information to begin to make meaning of it.

Summary

“What about the kids?” is a dominant and consuming question for caregivers supporting children/youth around the dying and death of a family member. The concerns and fears encompassed in this question can overwhelm caregivers as they put vast amounts of energy into trying to protect children/youth from the suffering and pain that awaits them. Perhaps the hardest lesson these caregivers must learn is that they cannot protect their child/youth from the death any more than they can stop the death from happening. Instead, what is needed most from children/youth is to be included, prepared, and provided with a safe place for emotional expression. Children, as well as adults, will grieve in their own specific way, mediated by their developmental level, circumstances of the illness and death, and protective factors available to them. Providing comprehensive, whole-person care to palliative patients with children/youth in their care ought to include psychoeducation and support for all members of the family. Our communities' bereaved children/youth will be impacted by the death of their family members in countless ways throughout their lives. As professionals caring for people who are dying, we have a responsibility to mediate this impact to the best of our ability.

Professionals are not immune to subscribing to the myths listed in Table 1 and “are often inhibited by their anxieties about saying or doing the wrong thing and causing lasting emotional damage.”¹⁰ However, by communicating openly and honestly and including children/youth, informed care team members can offer many supportive interventions that a family can benefit from during the time leading up to and following the death. These interventions foster the best outcomes when they are offered early on in the palliative trajectory.^{[11] and [12]}

Our Setting

The Temmy Latner Centre for Palliative Care (TLCPC) at Mount Sinai Hospital in Toronto is one of Canada's largest academic palliative care programs, incorporating a children's center, the Max and Beatrice Wolfe Children's Centre, which provides pediatric palliative care and children's grief programs (Dr. Jay Children's Grief Program). Our children's center supports children, youth, and their families when a family member is dying or has died. This support includes Canada's first Camp Erin, an overnight children's grief camp. Children are referred to these programs for grief counseling by our center's palliative care physicians, local palliative care units and hospices, and a wide variety of community agencies. Children's grief programs are very limited in our large urban setting, as is true in most communities across North America. We have four counselors devoted to child and youth grief support services.

What We Do

Action 1: Intake and Assessment

The center has an open referral policy, accepting referrals from any source, including self-referrals, regardless of the nature of the illness or cause of death.

An intake phone call, lasting between 15 and 60 minutes, is made to the family to assess their needs and to provide psychoeducation and relevant resources. Based on our belief that early intervention provides the most supportive opportunities, families in which the patient is dying are prioritized.

As a result of demand for services being greater than our resources, children and their families bereaved at the time of referral are provided with an initial psychoeducational visit and assessment and then placed on a waiting list if further counseling is deemed appropriate.

In either case, the initial assessment often reveals that what the family needs most is psychoeducation about child/youth grief, communication and development, and reassurance about the benefits of the things they are already doing. Caregivers are provided with educational materials, including a copy of the center's publication Living Dying: A Guide for Adults Supporting Grieving Children and Teenagers,¹¹ a list of Web resources, books, and brochures written by us. All these resources are also available to professionals.

Action 2: Counseling

If further assessment and counseling are warranted, children are seen individually, with siblings and/or with their family depending on the needs and circumstances. The bulk of our counseling services are brief, typically lasting three or four sessions in total. However, more intensive counseling is available on a case-by-case basis, with progress and needs being assessed every four sessions. Counseling techniques including expressive arts, crafts, therapeutic play, and activities are used to support children/youth and families in the grieving process. Families are able to contact counselors when issues arise for them, which often occurs around anniversaries, holidays, other important events, and as children/youth develop and experience their grief in a new light.¹³

The center's model is resiliency-based, nonpathological, and family-centered. Caregivers are empowered as primary and ongoing sources of support and dominant role models for the grieving child and youth in their care. In addition to conversations with their counselor, families are offered monthly opportunities forcaregiver education and peer support and various therapeutic group activities for children/youth.

Action 3: Complex Cases

Referrals to secondary children's mental health services are facilitated for families with needs beyond the scope of our supportive grief services, including children with indicators of complicated grief who need more intensive counseling. For children with severe psychological distress, referrals are made to a pediatric psychiatrist with special interest in this area.

According to Rando,¹⁴ there are a number of forms of unresolved or complicated grief which can overlap, and each has components of denial or regression. These include feelings of grief and mourning being absent, an inhibition of some of the normal symptoms of grief, putting grief on hold for any reason, and when there is a dependent or ambivalent relationship with the deceased. Two common manifestations are extreme anger and extreme guilt.

Some types of death that place children/youth at risk for complicated grief include a sudden or unexpected death, a violent death, a death involving mutilation, the death of a child, and death as the result of a prolonged illness. Also included is complicated loss associated with social stigma such as imprisonment, suicide, AIDS, abortion, severe mental illness, serious family dysfunction, or addiction. However, the presence of these factors does not necessarily lead to complicated grief. Complicated loss is known to be mediated by personal, familial, and social factors that contribute to relative risk and resilience.

What We Say

Engaging a family early in the palliative journey allows greater opportunity to prepare children/youth and prevent possible negative outcomes.^{[6] and [15]} Christ and Weisenfluh¹⁶ tell us that the greatest need for support is found during the weeks leading up to the death. A large component of the early intervention we offer is age-appropriate psychoeducation to help caregivers conceptualize how their child/youth may be experiencing and understanding what is happening. Caregivers who anticipate some of the thoughts, feelings, questions, and struggles that their child/youth might face are empowered and children benefit.

The 3 Cs

1. Can I catch it?
2. Did I cause it?
3. Who is going to take care of me?

Julie Stokes¹⁵ was able to summarize what children/youth think and worry about most when a family member is dying into three questions. We have coined these three questions the “Three Cs”: Catch, Cause, and Care.

Catch

The first “C” relates to the fear expressed by children/youth that they could catch the illness. Melanie, a 7-year-old, explained that she would have a brain tumor soon because her sister Sarah, who was dying of brain cancer at the time, “is my sister and we lived in the same room always.” If such concerns go unexplored and children are not given clear information, caregivers may see children/youth distance themselves from their ill family member, develop a fear that they and the rest of their family will get sick and die as well, and other implications.¹⁷

The weight of language in a child's understanding of illness, death, and dying cannot be emphasized enough.¹¹ More often than not, indirect and generic language used by adults, such as referring to someone as being “sick” or “not doing well,” complicates a child's ability to differentiate between the common cold or flu and life-threatening diseases and illnesses. “My mom was sick and she died; therefore, all people that are sick die.” Many adults believe that their child is too young to understand what cancer means. While it is true that children may not be able to grasp the complex medical information about the illness, they are able to understand a great deal more than they are given credit for, and using the word “cancer” gives them a way to distinguish their dying family member's illness from others such as the common cold or flu.

Cause

The second “C” arises from the common thought in children/youth that they somehow caused or hastened the death and/or prevented the recovery of their family member. Cause is one of the five accepted subconcepts of the developmental understanding of death⁸ and among the last to be mastered due to its complexity and abstract components. As she sat under her pink bunk-bed, 5-year-old Tayah told her counselor that she had cancer when she was a little girl and then her mother got it after her. Eleven-year-old Joshua shared, “I just have to get to that cancer walk thing. If I can do that, then my mom will get her cure. That is what they said on TV you know, to walk for the cure!”

There are a number of ways that children/youth may try to own responsibility for the illness and death of their family member. They may believe that things they thought or did not think, did or did not do, felt or did not feel were directly related to the cause, progression, or death of the family member.¹⁸ These thoughts are especially strong for children in the magical thinking stage of development. In Piaget's theory of cognitive development, magical thinking dominates the preoperational stage (2–7 years old) and describes thinking disconnected from the laws of nature.¹⁹ Special attention should be given to assuring children in this age group that they are in no way responsible for the illness or death of their family member, as well as to avoid minimizing these fears and beliefs of responsibility.^{[6] and [17]} This point will need to be readdressed often, with frequent reassurance that they are not responsible.

Care

The third “C” includes concerns about what will become of them and who will take care of them as well as the desire to help care for the dying person. While it is commonly thought that this fear is felt more significantly by children/youth who have a dying or deceased parent, siblings of dying or deceased children appear to be just as challenged. They will experience the same break in their belief that their family member will always be with them.²⁰ Also, many children worry that their surviving parent will be incapacitated and unable to care for them after the death. Four-year-old Alex looked up at his mom one night and said, “You are dying in front of me. I'm scared. Who is going to turn out the light, I can't reach it, and who will cook for me, I can't turn on the stove?” This fear extends beyond who will take over the practical parental roles, to the worry that the child or youth will be orphaned.

Children will often connect their own experience to what they have seen or heard and fear the worst.^{[18] and [21]} Orphans are ever present in children's literature and movies and are often depicted as abandoned to fend for themselves. For many, this fear is grounded in the reality that their current caregiver may not have been emotionally able to address issues of custody or guardianship or that they do not have anyone willing or able to care for the kids after their death. As Alice lay on her bedroom floor writing notes to her dying mother in the critical care unit, she shared, “My mommy and my daddy are dying … they is both going to die,” convinced that this was the truth. Alice's dad is healthy and has been for all of Alice's life.

“Three Cs” and Adolescents

Occasionally, adults have questioned the relativity of the “Three Cs” to our adolescent (ages 13–18) population. Our clinical work has led us to conclude that indeed the “Three Cs” are very real in the lives of the youth we work with. An example of this in relation to “Catch” is Sarah, who expressed distress over the familial traits of breast cancer and the likelihood that her fate will one day mirror that of her mother, aunt, and grandmother.

With regard to “Cause,” we hear youth talk about the relationship between the quality of their caregiving efforts and the death of their family member. Many youth express a feeling that if they had done a better job caregiving, their family member would not have died, especially for youth in primary caregiving roles and single-parent homes.¹⁴

When looking at “Care,” youth are impacted by their ability to think abstractly and to experience the loss of what is yet to come. Youth understand that they depend on their caregivers for much more than their practical needs. Joshua talked to his counselor about the loss he was feeling as he searched for employment without his father's help and network. He shared, “If my Dad was here, he would know someone; he would know what I should do.” Important to note is that age is not always the best predictor of cognitive capacity as we see school-aged children grapple with many of the thoughts more commonly expressed by our older population.

Whether or not a caregiver has already spoken with a child about a diagnosis and prognosis, it is helpful to get him or her to consider what the child may be thinking about. Using the foundation of the “Three Cs” will help caregivers understand the importance of open, honest, and concrete communication, as well as feel better equipped to provide their child/youth with support.

Teaching Parents How to Communicate with Their Children

It is difficult for a parent to witness the reaction of a child/youth to such difficult information. This challenge cannot be questioned. However, the benefit to children/youth of having their parents lead or participate in communications and psychoeducation about the cancer and terminal prognosis is clear.^{[6], [7], [8] and [12]} Caregivers are able to clarify assumptions and misperceptions while modeling that it is permissible to talk about cancer and dying together.

Medical staff can facilitate opportunities for such family communications by including children in family meetings and discussions with medical staff and by explaining complex concepts to family members in a simple, concrete fashion. Caregivers often need professionals to welcome and encourage the children to be included. Staff can reassure parents that although they may fear that their children's inclusion will be harmful, on the contrary, inclusion is helpful.

Getting Started

1 Ask what the child/youth understands about the disease/illness.
2 Fill in any gaps in their understanding and explain the treatments that were given.
3 Explain cancer treatments such as chemotherapy, radiation, and surgery.
4 Ask the child/youth what he or she thinks is going to happen.
5 Explain in terms that can be understood that the family member will die.

In any conversation with children/youth about such complex and consequential material, follow their lead in regard to the amount of detail they want. Conceptualize it as an onion: You will want to provide the child/youth with clear and simple language describing basic information. Beyond that, peel off subsequent layers as the child/youth requests more information, always using clear and concrete language. The child/youth may be uncomfortable with the material and may attempt to change the topic. This is a healthy coping mechanism; the average child is quite good at knowing when he or she has reached the limit of their emotional attention span. Allow the child to take the conversation in a different direction, periodically checking to see if he or she is ready to come back to the topic at hand. The benefit of starting this course of conversation early is that it allows children/youth the chance to receive information in small, digestible pieces and the time to process and integrate the information to begin to make meaning of it.

Summary

“What about the kids?” is a dominant and consuming question for caregivers supporting children/youth around the dying and death of a family member. The concerns and fears encompassed in this question can overwhelm caregivers as they put vast amounts of energy into trying to protect children/youth from the suffering and pain that awaits them. Perhaps the hardest lesson these caregivers must learn is that they cannot protect their child/youth from the death any more than they can stop the death from happening. Instead, what is needed most from children/youth is to be included, prepared, and provided with a safe place for emotional expression. Children, as well as adults, will grieve in their own specific way, mediated by their developmental level, circumstances of the illness and death, and protective factors available to them. Providing comprehensive, whole-person care to palliative patients with children/youth in their care ought to include psychoeducation and support for all members of the family. Our communities' bereaved children/youth will be impacted by the death of their family members in countless ways throughout their lives. As professionals caring for people who are dying, we have a responsibility to mediate this impact to the best of our ability.

Health-Care Structure

Understand the existing health-care structure and what health care is available to all or for select populations. What is the extent of health-care services? Are there clinics for preventive care, or is most care obtained in the hospital? Is home care available with support from nurses and other professionals? Are emergency services available (eg, does the region have ambulances to transport and emergency departments to accept critically ill patients)? Where do patients obtain medications, and do they have to pay out of pocket for these? Do most people die in the hospital or at home? While websites and government sources are valuable, verify this information with clinicians since the clinical reality may be quite different.

Available Medications

To provide useful guidance in symptom management, it is necessary to have a list of available medications used to treat pain, nausea, dyspnea, constipation/diarrhea, wounds, and other symptoms commonly seen in oncology. Your presentation may need to be modified based upon these available drugs (Table 2). Where do patients obtain medications, and do they pay out of pocket for these? There are limitations on availability and access to opioids around the world.^[7] Which opioids are available and actually used? What is the process for obtaining a supply of an opioid for a person with cancer? For example, in some countries, physicians can order only one week's worth of medication at a time. In other countries, patients must obtain opioids from the police station rather than a pharmacy. In several settings, only the patient, not family members, can pick up the medication from the dispensing site. And in a few countries, only parenteral opioids are available. It is also helpful to understand issues such as the prevalence of drug trafficking in the region and how this might affect local drug laws. Are traditional medicines, such as herbal therapies, or other techniques commonly used? It is helpful to be aware of these practices and incorporate them into teaching plans where appropriate.

Education of Health-Care Professionals

International education in palliative care should consider how physicians, nurses, pharmacists, and others are educated. Is the educational system very traditional and formal, with little interaction between students and teachers? Professionals trained in this manner may be less comfortable when faced with role-play, learning through discussion, or other Socratic educational methods. That does not mean that one should exclude these methods when planning the curriculum but, rather, be prepared for silence and possibly even discomfort when first introduced. Seek guidance from local educators as to what methods will be acceptable.

Who is included in the health-care team? Are psychologists available, and are chaplains considered part of health-care services? What is the relationship between physicians, nurses, and other team members? Is collegiality accepted, or is there a hierarchy that limits true teamwork? What is the status of physicians, nurses, and other professionals in the region? In some areas, physicians are highly regarded and financially compensated accordingly. In other parts of the world, physicians have very low social status, respect, and compensation. Within diverse cultures, compensation and acceptance of tips (or bribes) to see a patient or perform an intervention may be accepted practice. Attitudes toward work hours may differ from the Western perspective. In some cultures, socialization and development of personal relationships may be considered more important than other aspects of the workload.^[8]

Planning in advance to know the targeted attendees is helpful. It is advisable to inquire if the hosts might consider inviting representatives from the ministry of health, the appropriate drug institutes, other key government officials, as well as medical, nursing, and pharmacy leaders who can become champions for access to pain relief and palliative care. Having multiple disciplines and leaders from health care and government at the same program can foster ongoing communication and understanding. Include chief educators as they can incorporate this content into their respective curricula.

Plan the Curriculum and the Program

The importance of cultural issues when developing content cannot be overstated.^[9] Factors that might affect pain expression and language or cultural beliefs about death and dying will greatly impact content for teaching. Be aware of local religious and spiritual beliefs impacting pain and palliative care. Consider issues surrounding disclosure of diagnosis and prognosis. Autonomy may not be the prevailing perspective as seen in North America. Ensure that slides are culturally correct and that pictures and illustrations are appropriate. Having the host country leaders review the curriculum in advance is advisable. Avoid cartoons as these may not translate well. Use case examples, but ensure that they represent the types of patients and scenarios seen by the audience. It is also important to avoid being ethnocentric as Western medicine has much to learn from other approaches. It is very helpful to use case studies from the host country. In some settings, trainers will not have access to computers and projectors, limiting the role of PowerPoint slides. Paper presentations or the use of flip-charts may be more accessible.

Consider the need for translation and, if so, which type will be used. Simultaneous interpretation generally requires a sound booth and headphones for participants, and may be more expensive. Consecutive interpretation requires that the instructor present blocks of information, usually a sentence or two, followed by the interpreter providing the content in the appropriate language. This requires speakers to plan much shorter presentations with up to 50% less content being delivered. In either case, trained interpreters can benefit from seeing the slides in advance so they can prepare and clarify prior to the presentation.

When developing an agenda, inquire about the usual times for breaks and meals, as well as time for prayers or other activities. What is considered a “full day” varies around the world, as does the value of adhering rigidly to a schedule. International education generally means that the agenda is fluid; once you are actually in the country and providing the course, other needs may arise. A common mistake is trying to squeeze in too much content. Ask your host to meet prior to the program and, optimally, plan for time before the course to tour health-care facilities. Arrange for a time to meet with key medical, nursing, pharmacy, and governmental leaders who are not scheduled to attend the meeting but might somehow influence curricula and practice. In some settings, local media may be alerted to generate local interest in the topic. Communicate with your host about these opportunities so that arrangements can be made in advance.

For resource-poor countries, consider asking for donations from colleagues before leaving, including books, CDs, and medical supplies. Check local regulations first, particularly if bringing in medications or equipment. If sending books, some countries require high tariff fees to be paid by the receiver when accepting these packages, creating a financial burden for your hosts. Inquire ahead of time if they have to pay to accept these packages. Additionally, in some resource-poor countries, professionals do not have access to personal or work computers and internet café computers often do not have CD drives. Information on jump drives may be more easily accessible.

Finally, visiting educators may want to pack small gifts to give to hosts and others. These should be easily transported and may include items that represent your city or institution. We have also found bringing candy and small toys to be universally appreciated when visiting pediatric settings. A small portable color printer can be used to print photographs of pediatric patients as some of these children have never seen pictures of themselves. You can also print photographs of participants in the training courses.

Personal Considerations

Several months prior to departure, you should contact your traveler's health information resource to identify which vaccinations and what documents are needed to enter the country. To avoid lost time due to illness, ciprofloxacin and antidiarrheal medicines should be obtained before traveling. It is advisable to update your passport. Some countries require you to have sufficient blank pages in your passport to allow entry into their country. An entry fee paid in cash may be required upon arrival. Travelers should consider the political climate of the country and check the U.S. Department of State website (included in Table 1) for alerts or precautions.

Consider appropriate attire when packing. Clothing should reflect respect for the cultural and religious beliefs of the attendees.

During the Experience

It is very useful to meet with interpreters prior to the presentations to clarify any questions. Translation can be quite complicated. For example, a slide that used the term “caring” was interpreted as “romantic love,” and concepts about suffering and death can take on a cultural meaning. Check with interpreters regularly to determine if the speed of delivery is acceptable. Also, translators may have difficulty with this emotional content. In some instances, interpreters have become tearful and required debriefing after palliative care education events. Consider nonverbal communication and personal space. In some cultures, it may not be appropriate to shake hands or to use two hands. Gestures may have very different meanings in other cultures, so avoid these forms of communication. For example, the “OK” sign commonly used in North America, with the tip of the finger touching the tip of the thumb and the other three fingers extended, is considered an obscene gesture in Brazil.

When using teaching strategies other than lecture, respect that some students may not be comfortable at first with nontraditional approaches. Informal teaching strategies that are valued in North America may be viewed as of poor academic quality in other cultures. Debate and discussion, which may make it seem that the student is questioning a teacher's view, may be seen as disrespectful. At times, eliciting personal reflection and experience can engage the audience. For example, when introducing the topic of communication, health-care professionals in the audience can be asked the following questions:

• If you had cancer, would you want to know?

• How about your prognosis?

• Would you want to know that you had a disease that you could die from?

Following these with “What do you tell your patients?” usually engenders excellent discussion.

We have also found that asking participants to do “homework” can be useful, particularly if the students have been quiet or reluctant to communicate during class. Suggested assignments might include listing the five top barriers to cancer pain management in your setting, describing a difficult death or a death that you made better, or related issues. Reticence to speak during class may be due to discomfort with language skills. Some students feel more comfortable sharing ideas in writing, and these assignments have yielded valuable stories that have helped us to understand their experiences and perspectives.

Since the goal of these educational efforts should be sustained, it is helpful to develop a plan for the future with students. Assist them in identifying goals, as well as action items to meet these goals. Allow time for individual meetings between faculty and students to fine-tune these efforts. This ensures that the educational experience will have a greater likelihood of translation into action. To provide practical assistance, if Internet access is available, spend time with small groups to demonstrate literature searches, useful websites, and other information that will foster continuity.

Faculty should meet after each day of training to modify the planned agenda as needed, to optimally meet the needs of the participants. This also provides needed time to debrief about the day's activities and provide support. Particularly when new to international education, the experience may be overwhelming as the status of health-care in developing countries can cause deep personal reflection.

Finally, celebrate. We have found that many students appreciate the opportunity to have some type of closing ceremony to receive certificates and pins, acknowledge their accomplishments, and encourage their future efforts.

Afterward

E-mail, voiceover Internet services, and videoconferencing software have significantly enhanced global communication. Faculty can make themselves available to the trainees after leaving the country using these technologies. Group conversations via e-mail can help solve problems, provide encouragement, and celebrate successes. Connect attendees with international professional organizations to support ongoing educational efforts. It is very useful to identify the leaders or champions and to plan ongoing support to help sustain their commitment. Many countries do not have professional organizations or support networks. These leaders can exist in isolation and suffer great personal sacrifice to lead palliative care efforts in their country.

Conclusion

When educating about pain and palliative care to a worldwide audience, never make assumptions, expect the unexpected, and be flexible. We have found many of these international teaching experiences to be some of the most exhilarating of our professional lives, providing insight to our own practices and creating lasting relationships with colleagues from around the globe. Ultimately, these efforts will improve care for people with cancer.

Acknowledgments

The authors acknowledge the American Association of Colleges of Nursing and the City of Hope for their ongoing support of the End-of-Life Nursing Education Consortium training activities, as well as the Oncology Nursing Society Foundation and the Open Society Institute for their support of international educational efforts. They also thank Marian Grant for her input.

Health-Care Structure

Understand the existing health-care structure and what health care is available to all or for select populations. What is the extent of health-care services? Are there clinics for preventive care, or is most care obtained in the hospital? Is home care available with support from nurses and other professionals? Are emergency services available (eg, does the region have ambulances to transport and emergency departments to accept critically ill patients)? Where do patients obtain medications, and do they have to pay out of pocket for these? Do most people die in the hospital or at home? While websites and government sources are valuable, verify this information with clinicians since the clinical reality may be quite different.

Available Medications

To provide useful guidance in symptom management, it is necessary to have a list of available medications used to treat pain, nausea, dyspnea, constipation/diarrhea, wounds, and other symptoms commonly seen in oncology. Your presentation may need to be modified based upon these available drugs (Table 2). Where do patients obtain medications, and do they pay out of pocket for these? There are limitations on availability and access to opioids around the world.^[7] Which opioids are available and actually used? What is the process for obtaining a supply of an opioid for a person with cancer? For example, in some countries, physicians can order only one week's worth of medication at a time. In other countries, patients must obtain opioids from the police station rather than a pharmacy. In several settings, only the patient, not family members, can pick up the medication from the dispensing site. And in a few countries, only parenteral opioids are available. It is also helpful to understand issues such as the prevalence of drug trafficking in the region and how this might affect local drug laws. Are traditional medicines, such as herbal therapies, or other techniques commonly used? It is helpful to be aware of these practices and incorporate them into teaching plans where appropriate.

Education of Health-Care Professionals

International education in palliative care should consider how physicians, nurses, pharmacists, and others are educated. Is the educational system very traditional and formal, with little interaction between students and teachers? Professionals trained in this manner may be less comfortable when faced with role-play, learning through discussion, or other Socratic educational methods. That does not mean that one should exclude these methods when planning the curriculum but, rather, be prepared for silence and possibly even discomfort when first introduced. Seek guidance from local educators as to what methods will be acceptable.

Who is included in the health-care team? Are psychologists available, and are chaplains considered part of health-care services? What is the relationship between physicians, nurses, and other team members? Is collegiality accepted, or is there a hierarchy that limits true teamwork? What is the status of physicians, nurses, and other professionals in the region? In some areas, physicians are highly regarded and financially compensated accordingly. In other parts of the world, physicians have very low social status, respect, and compensation. Within diverse cultures, compensation and acceptance of tips (or bribes) to see a patient or perform an intervention may be accepted practice. Attitudes toward work hours may differ from the Western perspective. In some cultures, socialization and development of personal relationships may be considered more important than other aspects of the workload.^[8]

Planning in advance to know the targeted attendees is helpful. It is advisable to inquire if the hosts might consider inviting representatives from the ministry of health, the appropriate drug institutes, other key government officials, as well as medical, nursing, and pharmacy leaders who can become champions for access to pain relief and palliative care. Having multiple disciplines and leaders from health care and government at the same program can foster ongoing communication and understanding. Include chief educators as they can incorporate this content into their respective curricula.

Plan the Curriculum and the Program

The importance of cultural issues when developing content cannot be overstated.^[9] Factors that might affect pain expression and language or cultural beliefs about death and dying will greatly impact content for teaching. Be aware of local religious and spiritual beliefs impacting pain and palliative care. Consider issues surrounding disclosure of diagnosis and prognosis. Autonomy may not be the prevailing perspective as seen in North America. Ensure that slides are culturally correct and that pictures and illustrations are appropriate. Having the host country leaders review the curriculum in advance is advisable. Avoid cartoons as these may not translate well. Use case examples, but ensure that they represent the types of patients and scenarios seen by the audience. It is also important to avoid being ethnocentric as Western medicine has much to learn from other approaches. It is very helpful to use case studies from the host country. In some settings, trainers will not have access to computers and projectors, limiting the role of PowerPoint slides. Paper presentations or the use of flip-charts may be more accessible.

Consider the need for translation and, if so, which type will be used. Simultaneous interpretation generally requires a sound booth and headphones for participants, and may be more expensive. Consecutive interpretation requires that the instructor present blocks of information, usually a sentence or two, followed by the interpreter providing the content in the appropriate language. This requires speakers to plan much shorter presentations with up to 50% less content being delivered. In either case, trained interpreters can benefit from seeing the slides in advance so they can prepare and clarify prior to the presentation.

When developing an agenda, inquire about the usual times for breaks and meals, as well as time for prayers or other activities. What is considered a “full day” varies around the world, as does the value of adhering rigidly to a schedule. International education generally means that the agenda is fluid; once you are actually in the country and providing the course, other needs may arise. A common mistake is trying to squeeze in too much content. Ask your host to meet prior to the program and, optimally, plan for time before the course to tour health-care facilities. Arrange for a time to meet with key medical, nursing, pharmacy, and governmental leaders who are not scheduled to attend the meeting but might somehow influence curricula and practice. In some settings, local media may be alerted to generate local interest in the topic. Communicate with your host about these opportunities so that arrangements can be made in advance.

For resource-poor countries, consider asking for donations from colleagues before leaving, including books, CDs, and medical supplies. Check local regulations first, particularly if bringing in medications or equipment. If sending books, some countries require high tariff fees to be paid by the receiver when accepting these packages, creating a financial burden for your hosts. Inquire ahead of time if they have to pay to accept these packages. Additionally, in some resource-poor countries, professionals do not have access to personal or work computers and internet café computers often do not have CD drives. Information on jump drives may be more easily accessible.

Finally, visiting educators may want to pack small gifts to give to hosts and others. These should be easily transported and may include items that represent your city or institution. We have also found bringing candy and small toys to be universally appreciated when visiting pediatric settings. A small portable color printer can be used to print photographs of pediatric patients as some of these children have never seen pictures of themselves. You can also print photographs of participants in the training courses.

Personal Considerations

Several months prior to departure, you should contact your traveler's health information resource to identify which vaccinations and what documents are needed to enter the country. To avoid lost time due to illness, ciprofloxacin and antidiarrheal medicines should be obtained before traveling. It is advisable to update your passport. Some countries require you to have sufficient blank pages in your passport to allow entry into their country. An entry fee paid in cash may be required upon arrival. Travelers should consider the political climate of the country and check the U.S. Department of State website (included in Table 1) for alerts or precautions.

Consider appropriate attire when packing. Clothing should reflect respect for the cultural and religious beliefs of the attendees.

During the Experience

It is very useful to meet with interpreters prior to the presentations to clarify any questions. Translation can be quite complicated. For example, a slide that used the term “caring” was interpreted as “romantic love,” and concepts about suffering and death can take on a cultural meaning. Check with interpreters regularly to determine if the speed of delivery is acceptable. Also, translators may have difficulty with this emotional content. In some instances, interpreters have become tearful and required debriefing after palliative care education events. Consider nonverbal communication and personal space. In some cultures, it may not be appropriate to shake hands or to use two hands. Gestures may have very different meanings in other cultures, so avoid these forms of communication. For example, the “OK” sign commonly used in North America, with the tip of the finger touching the tip of the thumb and the other three fingers extended, is considered an obscene gesture in Brazil.

When using teaching strategies other than lecture, respect that some students may not be comfortable at first with nontraditional approaches. Informal teaching strategies that are valued in North America may be viewed as of poor academic quality in other cultures. Debate and discussion, which may make it seem that the student is questioning a teacher's view, may be seen as disrespectful. At times, eliciting personal reflection and experience can engage the audience. For example, when introducing the topic of communication, health-care professionals in the audience can be asked the following questions:

• If you had cancer, would you want to know?

• How about your prognosis?

• Would you want to know that you had a disease that you could die from?

Following these with “What do you tell your patients?” usually engenders excellent discussion.

We have also found that asking participants to do “homework” can be useful, particularly if the students have been quiet or reluctant to communicate during class. Suggested assignments might include listing the five top barriers to cancer pain management in your setting, describing a difficult death or a death that you made better, or related issues. Reticence to speak during class may be due to discomfort with language skills. Some students feel more comfortable sharing ideas in writing, and these assignments have yielded valuable stories that have helped us to understand their experiences and perspectives.

Since the goal of these educational efforts should be sustained, it is helpful to develop a plan for the future with students. Assist them in identifying goals, as well as action items to meet these goals. Allow time for individual meetings between faculty and students to fine-tune these efforts. This ensures that the educational experience will have a greater likelihood of translation into action. To provide practical assistance, if Internet access is available, spend time with small groups to demonstrate literature searches, useful websites, and other information that will foster continuity.

Faculty should meet after each day of training to modify the planned agenda as needed, to optimally meet the needs of the participants. This also provides needed time to debrief about the day's activities and provide support. Particularly when new to international education, the experience may be overwhelming as the status of health-care in developing countries can cause deep personal reflection.

Finally, celebrate. We have found that many students appreciate the opportunity to have some type of closing ceremony to receive certificates and pins, acknowledge their accomplishments, and encourage their future efforts.

Afterward

E-mail, voiceover Internet services, and videoconferencing software have significantly enhanced global communication. Faculty can make themselves available to the trainees after leaving the country using these technologies. Group conversations via e-mail can help solve problems, provide encouragement, and celebrate successes. Connect attendees with international professional organizations to support ongoing educational efforts. It is very useful to identify the leaders or champions and to plan ongoing support to help sustain their commitment. Many countries do not have professional organizations or support networks. These leaders can exist in isolation and suffer great personal sacrifice to lead palliative care efforts in their country.

Conclusion

When educating about pain and palliative care to a worldwide audience, never make assumptions, expect the unexpected, and be flexible. We have found many of these international teaching experiences to be some of the most exhilarating of our professional lives, providing insight to our own practices and creating lasting relationships with colleagues from around the globe. Ultimately, these efforts will improve care for people with cancer.

Acknowledgments

The authors acknowledge the American Association of Colleges of Nursing and the City of Hope for their ongoing support of the End-of-Life Nursing Education Consortium training activities, as well as the Oncology Nursing Society Foundation and the Open Society Institute for their support of international educational efforts. They also thank Marian Grant for her input.

Health-Care Structure

Understand the existing health-care structure and what health care is available to all or for select populations. What is the extent of health-care services? Are there clinics for preventive care, or is most care obtained in the hospital? Is home care available with support from nurses and other professionals? Are emergency services available (eg, does the region have ambulances to transport and emergency departments to accept critically ill patients)? Where do patients obtain medications, and do they have to pay out of pocket for these? Do most people die in the hospital or at home? While websites and government sources are valuable, verify this information with clinicians since the clinical reality may be quite different.

Available Medications

To provide useful guidance in symptom management, it is necessary to have a list of available medications used to treat pain, nausea, dyspnea, constipation/diarrhea, wounds, and other symptoms commonly seen in oncology. Your presentation may need to be modified based upon these available drugs (Table 2). Where do patients obtain medications, and do they pay out of pocket for these? There are limitations on availability and access to opioids around the world.^[7] Which opioids are available and actually used? What is the process for obtaining a supply of an opioid for a person with cancer? For example, in some countries, physicians can order only one week's worth of medication at a time. In other countries, patients must obtain opioids from the police station rather than a pharmacy. In several settings, only the patient, not family members, can pick up the medication from the dispensing site. And in a few countries, only parenteral opioids are available. It is also helpful to understand issues such as the prevalence of drug trafficking in the region and how this might affect local drug laws. Are traditional medicines, such as herbal therapies, or other techniques commonly used? It is helpful to be aware of these practices and incorporate them into teaching plans where appropriate.

Education of Health-Care Professionals

International education in palliative care should consider how physicians, nurses, pharmacists, and others are educated. Is the educational system very traditional and formal, with little interaction between students and teachers? Professionals trained in this manner may be less comfortable when faced with role-play, learning through discussion, or other Socratic educational methods. That does not mean that one should exclude these methods when planning the curriculum but, rather, be prepared for silence and possibly even discomfort when first introduced. Seek guidance from local educators as to what methods will be acceptable.

Who is included in the health-care team? Are psychologists available, and are chaplains considered part of health-care services? What is the relationship between physicians, nurses, and other team members? Is collegiality accepted, or is there a hierarchy that limits true teamwork? What is the status of physicians, nurses, and other professionals in the region? In some areas, physicians are highly regarded and financially compensated accordingly. In other parts of the world, physicians have very low social status, respect, and compensation. Within diverse cultures, compensation and acceptance of tips (or bribes) to see a patient or perform an intervention may be accepted practice. Attitudes toward work hours may differ from the Western perspective. In some cultures, socialization and development of personal relationships may be considered more important than other aspects of the workload.^[8]

Planning in advance to know the targeted attendees is helpful. It is advisable to inquire if the hosts might consider inviting representatives from the ministry of health, the appropriate drug institutes, other key government officials, as well as medical, nursing, and pharmacy leaders who can become champions for access to pain relief and palliative care. Having multiple disciplines and leaders from health care and government at the same program can foster ongoing communication and understanding. Include chief educators as they can incorporate this content into their respective curricula.

Plan the Curriculum and the Program

The importance of cultural issues when developing content cannot be overstated.^[9] Factors that might affect pain expression and language or cultural beliefs about death and dying will greatly impact content for teaching. Be aware of local religious and spiritual beliefs impacting pain and palliative care. Consider issues surrounding disclosure of diagnosis and prognosis. Autonomy may not be the prevailing perspective as seen in North America. Ensure that slides are culturally correct and that pictures and illustrations are appropriate. Having the host country leaders review the curriculum in advance is advisable. Avoid cartoons as these may not translate well. Use case examples, but ensure that they represent the types of patients and scenarios seen by the audience. It is also important to avoid being ethnocentric as Western medicine has much to learn from other approaches. It is very helpful to use case studies from the host country. In some settings, trainers will not have access to computers and projectors, limiting the role of PowerPoint slides. Paper presentations or the use of flip-charts may be more accessible.

Consider the need for translation and, if so, which type will be used. Simultaneous interpretation generally requires a sound booth and headphones for participants, and may be more expensive. Consecutive interpretation requires that the instructor present blocks of information, usually a sentence or two, followed by the interpreter providing the content in the appropriate language. This requires speakers to plan much shorter presentations with up to 50% less content being delivered. In either case, trained interpreters can benefit from seeing the slides in advance so they can prepare and clarify prior to the presentation.

When developing an agenda, inquire about the usual times for breaks and meals, as well as time for prayers or other activities. What is considered a “full day” varies around the world, as does the value of adhering rigidly to a schedule. International education generally means that the agenda is fluid; once you are actually in the country and providing the course, other needs may arise. A common mistake is trying to squeeze in too much content. Ask your host to meet prior to the program and, optimally, plan for time before the course to tour health-care facilities. Arrange for a time to meet with key medical, nursing, pharmacy, and governmental leaders who are not scheduled to attend the meeting but might somehow influence curricula and practice. In some settings, local media may be alerted to generate local interest in the topic. Communicate with your host about these opportunities so that arrangements can be made in advance.

For resource-poor countries, consider asking for donations from colleagues before leaving, including books, CDs, and medical supplies. Check local regulations first, particularly if bringing in medications or equipment. If sending books, some countries require high tariff fees to be paid by the receiver when accepting these packages, creating a financial burden for your hosts. Inquire ahead of time if they have to pay to accept these packages. Additionally, in some resource-poor countries, professionals do not have access to personal or work computers and internet café computers often do not have CD drives. Information on jump drives may be more easily accessible.

Finally, visiting educators may want to pack small gifts to give to hosts and others. These should be easily transported and may include items that represent your city or institution. We have also found bringing candy and small toys to be universally appreciated when visiting pediatric settings. A small portable color printer can be used to print photographs of pediatric patients as some of these children have never seen pictures of themselves. You can also print photographs of participants in the training courses.

Personal Considerations

Several months prior to departure, you should contact your traveler's health information resource to identify which vaccinations and what documents are needed to enter the country. To avoid lost time due to illness, ciprofloxacin and antidiarrheal medicines should be obtained before traveling. It is advisable to update your passport. Some countries require you to have sufficient blank pages in your passport to allow entry into their country. An entry fee paid in cash may be required upon arrival. Travelers should consider the political climate of the country and check the U.S. Department of State website (included in Table 1) for alerts or precautions.

Consider appropriate attire when packing. Clothing should reflect respect for the cultural and religious beliefs of the attendees.

During the Experience

It is very useful to meet with interpreters prior to the presentations to clarify any questions. Translation can be quite complicated. For example, a slide that used the term “caring” was interpreted as “romantic love,” and concepts about suffering and death can take on a cultural meaning. Check with interpreters regularly to determine if the speed of delivery is acceptable. Also, translators may have difficulty with this emotional content. In some instances, interpreters have become tearful and required debriefing after palliative care education events. Consider nonverbal communication and personal space. In some cultures, it may not be appropriate to shake hands or to use two hands. Gestures may have very different meanings in other cultures, so avoid these forms of communication. For example, the “OK” sign commonly used in North America, with the tip of the finger touching the tip of the thumb and the other three fingers extended, is considered an obscene gesture in Brazil.

When using teaching strategies other than lecture, respect that some students may not be comfortable at first with nontraditional approaches. Informal teaching strategies that are valued in North America may be viewed as of poor academic quality in other cultures. Debate and discussion, which may make it seem that the student is questioning a teacher's view, may be seen as disrespectful. At times, eliciting personal reflection and experience can engage the audience. For example, when introducing the topic of communication, health-care professionals in the audience can be asked the following questions:

• If you had cancer, would you want to know?

• How about your prognosis?

• Would you want to know that you had a disease that you could die from?

Following these with “What do you tell your patients?” usually engenders excellent discussion.

We have also found that asking participants to do “homework” can be useful, particularly if the students have been quiet or reluctant to communicate during class. Suggested assignments might include listing the five top barriers to cancer pain management in your setting, describing a difficult death or a death that you made better, or related issues. Reticence to speak during class may be due to discomfort with language skills. Some students feel more comfortable sharing ideas in writing, and these assignments have yielded valuable stories that have helped us to understand their experiences and perspectives.

Since the goal of these educational efforts should be sustained, it is helpful to develop a plan for the future with students. Assist them in identifying goals, as well as action items to meet these goals. Allow time for individual meetings between faculty and students to fine-tune these efforts. This ensures that the educational experience will have a greater likelihood of translation into action. To provide practical assistance, if Internet access is available, spend time with small groups to demonstrate literature searches, useful websites, and other information that will foster continuity.

Faculty should meet after each day of training to modify the planned agenda as needed, to optimally meet the needs of the participants. This also provides needed time to debrief about the day's activities and provide support. Particularly when new to international education, the experience may be overwhelming as the status of health-care in developing countries can cause deep personal reflection.

Finally, celebrate. We have found that many students appreciate the opportunity to have some type of closing ceremony to receive certificates and pins, acknowledge their accomplishments, and encourage their future efforts.

Afterward

E-mail, voiceover Internet services, and videoconferencing software have significantly enhanced global communication. Faculty can make themselves available to the trainees after leaving the country using these technologies. Group conversations via e-mail can help solve problems, provide encouragement, and celebrate successes. Connect attendees with international professional organizations to support ongoing educational efforts. It is very useful to identify the leaders or champions and to plan ongoing support to help sustain their commitment. Many countries do not have professional organizations or support networks. These leaders can exist in isolation and suffer great personal sacrifice to lead palliative care efforts in their country.

Conclusion

When educating about pain and palliative care to a worldwide audience, never make assumptions, expect the unexpected, and be flexible. We have found many of these international teaching experiences to be some of the most exhilarating of our professional lives, providing insight to our own practices and creating lasting relationships with colleagues from around the globe. Ultimately, these efforts will improve care for people with cancer.

Acknowledgments

The authors acknowledge the American Association of Colleges of Nursing and the City of Hope for their ongoing support of the End-of-Life Nursing Education Consortium training activities, as well as the Oncology Nursing Society Foundation and the Open Society Institute for their support of international educational efforts. They also thank Marian Grant for her input.

Families report high levels of satisfaction with hospice and are more likely to describe high-quality care.¹ Despite this, only 40% of people in the United States die while receiving hospice care.³ Although longer hospice stays are associated with better quality of life in patients and less depression in bereaved family members,^{[4] and [5]} many patients enroll very late in the course of illness. In fact, the median length of stay is just over 3 weeks, and a third of patients die or are discharged within 1 week of hospice enrollment.³ The result is that brief exposures to hospice at the end of life do not allow patients and families to take full advantage of the benefits.⁶

There are several explanations for why people enroll in hospice so late. The Medicare Hospice Benefit requires hospice patients to choose a plan of comfort care, which means that they must usually forgo disease-directed therapies unless they provide a specific palliative benefit. Furthermore, the financial per diem payment structure of hospice means that patients may need to forgo palliative treatments that cannot be covered under the typical hospice reimbursement (approximately $150/day for routine home care). Patients may not be willing to give up these therapies or may be reluctant to transition from a model of care focusing on disease-directed therapies to one with palliation as the goal.

Patients may also enroll in hospice later if their physicians do not discuss hospice or if they have these discussions in the last few weeks of the patient's life.^{[7] and [8]} Physicians may delay hospice discussions because they are unsure of the patient's prognosis,⁹ although the disease trajectory in patients with cancer is often more straightforward than in patients with non-oncologic diagnoses. Studies have documented deficiencies in doctor–patient communication regarding prognosis and end-of-life issues,¹⁰ and patients report inadequate communication with physicians about shared decision making at the end of life.¹ Another study found that about half of patients diagnosed with metastatic lung cancer reported not having discussed hospice with a provider within 4–7 months after diagnosis.¹¹

Although these discussions may be delayed or avoided altogether, seriously ill patients value the ability to prepare for the end of life.^{[12] and [13]} Patients rely on their physicians to discuss hospice and other end-of-life care options. Furthermore, most family caregivers report that communication with their oncologists was important in helping them to understand the patient's prognosis and to see the role that hospice could play as a treatment alternative.⁷

These conversations are often difficult for patients and families and can also be challenging for physicians. Nevertheless, communication skills in discussing transitions to palliative care can be learned.^{[14] and [15]} Although these discussions are not nearly as straightforward as a medical or surgical procedure, one can approach them with the same methodical preparation and careful consideration of the steps involved.

When Is a Hospice Discussion Appropriate?

To be eligible for the Medicare Hospice Benefit, a patient must have a prognosis of 6 months or less if his or her illness runs its usual course; also, the patient needs to be willing to accept the hospice philosophy of comfort care. This second criterion is not formally defined but is generally accepted to mean that the patient must be willing to forgo disease-directed therapies related to the hospice admitting diagnosis.

These eligibility criteria should not be used to define the patients for whom a hospice discussion is appropriate however. When a patient's goals and values reflect a desire to focus on palliation, it is time for the physician to initiate a hospice discussion. Other triggers for early hospice discussions can include a change in clinical status, recent hospitalization, decline in performance status, new weight loss, or complication of treatment. Although these factors may prompt a discussion of options for care, including hospice,^{[16] and [17]} not all discussions will lead to a hospice enrollment decision. Nevertheless, earlier discussions that prompt conversations about a patient's needs, goals, and preferences can facilitate later decisions about hospice and other treatment options.

A Six-Step Roadmap

We provide a Six-Step Roadmap for navigating discussions about hospice adapted from the SPIKES protocol for delivering bad news.¹⁸ This strategy is comprised of six communication steps that can be remembered by using the mnemonic SPIKES: setting up the discussion, assessing the patient's perception, inviting a patient to discuss individual goals and needs, sharing knowledge, empathizing with the patient's emotions, and summarizing and strategizing the next steps.

Step 1: Set Up the Discussion About Hospice

Before discussing hospice with a patient and family, it is important to communicate with other members of the medical team to ensure an understanding of the patient's prognosis and treatment options. It is also helpful to find out what the patient and family may have expressed to other providers regarding these issues and how they have been coping. Any provider who has been in contact with the patient may be able to contribute to this consensus, including the medical oncologist, radiation oncologist, palliative care physician, primary care physician, home nurse, and social worker. A clear, unified message from the team decreases confusion for the patient and family.

Once a common agreement has been established regarding the patient's prognosis and treatment options, physicians can schedule a time and arrange for a place to allow for an uninterrupted conversation. Scheduling a patient at the end of a clinic day or visiting a patient in the hospital during an admission are potential ways to do this. Before scheduling a meeting, however, it is essential to know who the patient would like to be present at the meeting. One approach may be to tell the patient that there are important options to discuss regarding the next steps in his or her care and find out who may be able to help the patient with such decisions (Table 2). Additionally, a palliative care physician may cofacilitate these discussions. If the patient already has a palliative care physician, it may be helpful to have him or her involved in the meeting. If the patient has not yet been evaluated by a palliative care team, it may be possible to consult a palliative care specialist who can attend the meeting or follow up with the patient afterward.

Mr. C's medical oncologist, Dr. A, contacted Mr. C's radiation oncologist as well as his primary care physician. They all agreed that his prognosis could be measured in weeks to months and that his performance status precluded any further chemotherapy. Dr. A also spoke with the hospital social worker who met Mr. C and his wife during his most recent hospitalization. The social worker said that Mr. C's wife has been very distressed, particularly about his increasing debility and her difficulty in caring for him at home. When Dr. A visited Mr. C during his hospitalization, Dr. A explained to Mr. C that they would be making some decisions about the next steps in his care and asked who might be able to help with these decisions. When Mr. C said his wife would be this person, Dr. A asked that she come to his next visit. Dr. A decided to schedule Mr. C for an appointment at the end of his clinic session the following week.

Step 2: Assess the Patient's Perception

The physician can begin this discussion by asking the patient to describe his or her current medical situation (Table 2). Although the physician may have provided this information on prior occasions, it is important to hear the patient's perception of the diagnosis and prognosis. Patients with advanced cancer often overestimate their prognosis and are more likely to favor life-extending therapies over hospice.¹⁹ These questions provide an opportunity to address any misconceptions or gaps in understanding that the patient may have. When the physician, patient, and family are in agreement with the patient's current medical situation it allows for further exploration of the patient's hopes and concerns.

This part of the discussion should rely on open-ended questions designed to elicit the patient's perspective. In particular, an invitation to “tell me more” encourages patients to explore how they are thinking or feeling and can yield more information than closed-ended or leading questions. This phrase can also help redirect the conversation when necessary (“You mentioned before that you are worried that the chemotherapy is not working anymore. Tell me more about your concerns.”).

Dr. A asked Mr. C how he was doing overall and to describe his understanding of whether the erlotinib had been working. In response, Mr. C expressed his concern about his recent weight loss and lethargy. Dr. A asked Mr. C to tell him more about these concerns, and Mr. C said that he thought his symptoms were a sign that the erlotinib was not helping him. He said he knew that the CT scans showed progression of disease, and he wondered whether chemotherapy could help. Dr. A confirmed there was progression of cancer in his lungs and liver. Dr. A also expressed his concern that more chemotherapy would not provide additional benefit for him and may harm him. Mr. C and his wife were tearful and agreed that he was too weak for more chemotherapy. Dr. A acknowledged that the disease had progressed quickly and must be very upsetting to them.