Palliative Therapy

This is an important and common question about a complicated issue that many of us dread -- people with a chronic or advanced illness, clinicians helping patients, and even just as human beings with empathy and fears. It is not my specific area of expertise as I am not a child psychiatrist or a pediatric palliative care specialist, but I have had enough training in both to offer some suggestions.

Books can be helpful, just to have something concrete to provide practical advice and start to give a sense of mastery to an area that most otherwise feel quite at sea. As such, there are plenty out there, depending on the specific situation -- books for parents to help them be able to talk to their children about their illness, or dying, books for children of different ages to deal with a parent's illness or dying or through grief and loss, literature for children who are suffering a chronic or advanced illness, books for the parents of such children, or for bereaved parents, and even material for siblings of sick children.

Mainly having training in Palliative Care and now working in an oncology setting, most of the resources I recommend are related to patients with cancer. That being said, much of the literature out there, I think, is based on this, and some of the resources I can provide in this area also include information that is more generally applied. The following websites are generally very useful for providing all sort of supportive information for people dealing with cancer: www.cancercare.org and www.cancer.net, the sites for CancerCare, an organization devoted to providing supportive care for cancer patients and their families, and oncologist-approved information from the American Society of Clinical Oncology, respectively. Additionally, the American Cancer Society, an organization geared to patients and the general lay public, has very informative information on this subject on its site at the following link: http://www.cancer.org/Treatment/ChildrenandCancer/HelpingChildrenWhenaFamilyMemberHasCancer/DealingWithaParentsTerminalIllness/index . Websites for organizations specifically addressing children whose parents have or have had cancer include www.childrenstreehousefdn.org for Children’s Treehouse Foundation and www.kidskonnected.org for Kids Konnected, the latter of which specifically includes on its resource page a list of books organized by the target audiences I mentioned, as well as on-site information for addressing these matters specifically based on e.g. the age of the child or the issue. Lastly, there is an organization focused on siblings of patients with cancer called SuperSibs, and their website, www.supersibs.org, has a host of useful information.

Some helpful things I tell families struggling with the prospect of having to discuss these matters with their children or agonizing about how to broach the subject are as follows: 1) Talk through your sense of what your child knows or understands. Oftentimes there are clues in their talking or behavior to which parents are attuned in suggesting they might have an inkling that something is wrong, that things are changing, even if it is a heightened curiosity about dad's activities, or whereabouts, or mom's body, or about life, in general. Following through with this can lead to interesting and fruitful conversation both in addressing the topic and for your child's growth. The notion that we all have that kids are smarter than we perceive, and, in some ways, more insightful than ourselves, is something that should be heeded and not overlooked. Not only can it cause distance and breed anxiety, but it has the potential to be a missed opportunity for maturation and connection. If recognized, it can be an open door to a natural, comfortable, and comforting conversation. As difficult as dealing with a parent's illness can be for a child and family, the chance to share these fears or concerns is a welcome one from which all parties can emerge with a positive feeling of competence and safety. 2) Trust what you already know about your children. As much useful advice as you can get from the literature, the most helpful tidbit that you will be told is that you know your kids best. Be with them where you already are with them and go to where they are. Use what you know about them and about what they know.

That being said, I would not presume that your asking for help in this situation at all means that you are out of touch with your child. It is, of course, to be expected that even the most attentive parent would feel overwhelmed and inhibited when faced with this issue, so, for some more direction and encouragement, or even to just have something to grasp, the written word has weight to provide a foundation and sense of traction.

If you search Amazon for any of the books you find through the resources I mentioned, you will find even more interesting and novel approaches to addressing these issues, from activity books to coloring books, etc. After all that, I can tell you that the one book to which I have been referred and recommend to my patients on this matter is called How to Help Children Through a Parent's Serious Illness by Kathleen McCue, MA, CCLS and Ron Bonn.

This is an important and common question about a complicated issue that many of us dread -- people with a chronic or advanced illness, clinicians helping patients, and even just as human beings with empathy and fears. It is not my specific area of expertise as I am not a child psychiatrist or a pediatric palliative care specialist, but I have had enough training in both to offer some suggestions.

Books can be helpful, just to have something concrete to provide practical advice and start to give a sense of mastery to an area that most otherwise feel quite at sea. As such, there are plenty out there, depending on the specific situation -- books for parents to help them be able to talk to their children about their illness, or dying, books for children of different ages to deal with a parent's illness or dying or through grief and loss, literature for children who are suffering a chronic or advanced illness, books for the parents of such children, or for bereaved parents, and even material for siblings of sick children.

Mainly having training in Palliative Care and now working in an oncology setting, most of the resources I recommend are related to patients with cancer. That being said, much of the literature out there, I think, is based on this, and some of the resources I can provide in this area also include information that is more generally applied. The following websites are generally very useful for providing all sort of supportive information for people dealing with cancer: www.cancercare.org and www.cancer.net, the sites for CancerCare, an organization devoted to providing supportive care for cancer patients and their families, and oncologist-approved information from the American Society of Clinical Oncology, respectively. Additionally, the American Cancer Society, an organization geared to patients and the general lay public, has very informative information on this subject on its site at the following link: http://www.cancer.org/Treatment/ChildrenandCancer/HelpingChildrenWhenaFamilyMemberHasCancer/DealingWithaParentsTerminalIllness/index . Websites for organizations specifically addressing children whose parents have or have had cancer include www.childrenstreehousefdn.org for Children’s Treehouse Foundation and www.kidskonnected.org for Kids Konnected, the latter of which specifically includes on its resource page a list of books organized by the target audiences I mentioned, as well as on-site information for addressing these matters specifically based on e.g. the age of the child or the issue. Lastly, there is an organization focused on siblings of patients with cancer called SuperSibs, and their website, www.supersibs.org, has a host of useful information.

Some helpful things I tell families struggling with the prospect of having to discuss these matters with their children or agonizing about how to broach the subject are as follows: 1) Talk through your sense of what your child knows or understands. Oftentimes there are clues in their talking or behavior to which parents are attuned in suggesting they might have an inkling that something is wrong, that things are changing, even if it is a heightened curiosity about dad's activities, or whereabouts, or mom's body, or about life, in general. Following through with this can lead to interesting and fruitful conversation both in addressing the topic and for your child's growth. The notion that we all have that kids are smarter than we perceive, and, in some ways, more insightful than ourselves, is something that should be heeded and not overlooked. Not only can it cause distance and breed anxiety, but it has the potential to be a missed opportunity for maturation and connection. If recognized, it can be an open door to a natural, comfortable, and comforting conversation. As difficult as dealing with a parent's illness can be for a child and family, the chance to share these fears or concerns is a welcome one from which all parties can emerge with a positive feeling of competence and safety. 2) Trust what you already know about your children. As much useful advice as you can get from the literature, the most helpful tidbit that you will be told is that you know your kids best. Be with them where you already are with them and go to where they are. Use what you know about them and about what they know.

That being said, I would not presume that your asking for help in this situation at all means that you are out of touch with your child. It is, of course, to be expected that even the most attentive parent would feel overwhelmed and inhibited when faced with this issue, so, for some more direction and encouragement, or even to just have something to grasp, the written word has weight to provide a foundation and sense of traction.

If you search Amazon for any of the books you find through the resources I mentioned, you will find even more interesting and novel approaches to addressing these issues, from activity books to coloring books, etc. After all that, I can tell you that the one book to which I have been referred and recommend to my patients on this matter is called How to Help Children Through a Parent's Serious Illness by Kathleen McCue, MA, CCLS and Ron Bonn.