Module 4 Discussion

Topic: Discussing fertility preservation with pediatric patients and their parents

Initiating the discussion about fertility preservation with an adolescent patient and their parents/caregivers can be difficult. Watch how the clinical psychologist broaches the topic with the patient and his parents. What strategies would you use to provide age and developmentally appropriate information about fertility preservation to parents of a pre-pubertal child?

108 Comments

  1. Shanna Logan

    The psychologist does a lovely job of initially checking in where the family are at and what has been shared already by the medical team, before outlining some goals in how he may assist that family in that session. He nicely displays a non-judgmental attitude. He sets about explaining why fertility preservation is needed given the treatment, and you can see that the father is digesting this information. I like how he includes Jake in the conversation by using his name and makes it clear that it is equally the boys decision to be made (regardless of consent coming from parents). However, all family members are clearly distressed and appear somewhat numb. I would perhaps ask Jake how we has going directly, acknowledge that this might seem like a difficult and strange situation to be in as a young person with his parents beside him. I might also ask him to tell me what he had understood after I explained why fertility preservation was needed, given the medical terminology. We cannot assume that because we’ve communicated testes are damaged that a young person then knows that this means the ability to have a baby later as an adult might be decreased.

    1. Stacy Sanford

      I agree with your observations. One would hope that later in the interview, the patients is provided opportunity to repeat back his understanding of what has been taught to better assess his understanding.

    2. Joanna Patten

      I agree with your assessment – especially in checking for understanding from the teen. In fact, checking for understanding from the entire family might be helpful to ensure that they are comprehending the immediate information as it is presented, as well as implications for conception.

      1. Vicky Wood

        I like using the teach back method to make sure patients and/or family members understand, as sometimes people nod or say they understand when they don’t.

    3. Karen Johnston-Jackson

      Dr. Klosky did a great job in communicating with the family in a non- judgemental way. I especially liked how he indicated that there is no right or wrong answers or choices and how he looked to Jake to be a part of decision process. I did NOT like that Dr, Klosky didn’t say something like “what are your feelings on this Jake?” or “do you have any questions Jake”

      1. Vogl Stacey

        I agree that I am also glad that he emphasized that there are no right or wrong answers to this. I would like to see him discuss a little more with Jake as he appears to be of a pre teen or teen age to be able to voice some concerns. I do feel like with as star struck and quiet as the parents were that this seemed to be a very one sided conversation so it is difficult to figure out what they got out of it.

    4. Stephanie Fortt

      I agree with your observations. I hope later in the interview that Jake is able to state what he understands and also to provide him with an opportunity to ask questions/meet without his parents present.

    5. Angelica Rodriguez

      Agreed. I appreciated Dr. Klosky clarifying the goal of their conversation/education was for the patient to “be at peace” with his decision.

      1. VichinsartvichaiP

        Couldn’t agree more.

    6. Cecily Smith

      I agree . I really like how he recognizes the ‘distress’ of the patient and family. He redirects or start the conversation by stating what the goals are for the discussion. Very calm and non judgmental delivery.

      1. Alexandra Huffman

        I agree. I think his assessment of their distress and ability to refocus the family preserved the therapeutic relationship. I also would suggest adding an assessment of how Jake learns to better tailor his education to learning styles with models or visuals.

    7. Michelle Reising

      I have to agree with everyone else. I thought the psychologist did a nice job of meeting the family where they were. He also took things slow and did not present the family with a lot of information/medical jargon all at once.

    8. Karen Pallotti

      I agree , this psychologist did a very good job of explaining his role and what they would discuss. He has a very even temperament and appears calming, acknowledging that the family is going through a lot right now. I particularly liked how he explained that there are no “right ” answers, that the family and pt need to explore the options and find the one that makes them feel “at peace”. I hope that in other interviews he is able to take Jake aside and speak with him individually without his parents present. In this video Jake looks scared to death and (understandably) totally overwhelmed.

  2. Stacy Sanford

    Dr. Klosky did a good job initiating this conversation with this family. I particularly appreciated how he assessed the family’s current knowledge and attitudes before beginning the educational portion of the interview as well as his attempts to outline the goals of the meeting. I also liked how he expressed that there are no correct choices just the choice that is right for this family so that they can feel “at peace.” I would hope that later in the interview there was opportunity for both parents and patient to repeat back their understanding to assess how well they received the information. I would also hope that the adolescent was provided opportunity to speak with Dr. Klosky alone to discuss any topics he might be uncomfortable discussing in front of his parents (i.e. pertaining to sexuality for example).

    1. Eileen Seltzer

      I agree with your comment. There is another video showing Dr. Klosky speaking with the son alone and speaking with the parents alone. And then all together again at the end. It must have been a long exhausting day for all. It is a lot to digest but it was handled well.

    2. Annie Huhnerkoch

      Agreed! I especially respect giving patients a chance to speak away from their parents especially regarding such a sensitive topic.

  3. Elizabeth Lachat

    I feel that the psychologist did a great job in initiating this conversation. I think it was very important that he asked the family of their current understanding of the situation and their knowledge on the subject versus assuming what they may or may not know. I liked that the psychologists set goals for the discussion, but felt that it may have been appropriate to also ask the family what their goals were for the session. Lastly, it is possible that this happened before or after the recorded discussion; but at Jake’s age, talking about reproductive health and fertility in front of his parents could feel very awkward. I think it would be important for the psychologist to speak to Jake alone at some point during this session.

    1. Lacey Ballew

      I agree with you statements Elizabeth with asking what the family’s goals may be and Jake’s comfort level with parents present. Each family member may have different views so perhaps individual sessions along with a family session could be helpful.

    2. Cheryl Smith

      I agree with you. Asking to meet with Jake would also be helpful to see how he is feeling without his parents being present. He may bring up things that he would not with his parents there.

    3. Cathy Gibson

      I thought about this as well, the importance of talking to Jake alone without his parents present. It would be good for Dr. Klosky to find out exactly what Jake understood- sometimes it is intimidating for a son or daughter to even talk about reproduction in front of their parents, let alone getting into detail about it. I did see in some of the other comments that they saw a video where he talked with both the parents alone and Jake alone.

    4. Tiffany Edwards

      I agree with your comment concerning the importance of any medical professional not assuming, as it relates to knowledge, experience, or expectations, on the part of the patient and/or family members.

    5. Patricia Sullivan

      I agree that the psychologist did a nice job- would have like him to talk to Jake alone- his father appeared to be the only one talking and quite upset.

  4. Joanna Patten

    After watching this clip, I realized that I should review the RCW’s as they relate to age of consent for medical cares in my state. My understanding is that the age of consent for mental health and reproductive health is 13, whereas the age of consent for all other medical care is 18. Although the conversation might be similar, discussing more at length separately, and assessing comprehension from both the teen and parents might inform the conversation as it is happening.

    1. Kristin Frazier

      You bring up a great point about being familiar with the age of consent in your state. Regardless of whether or not Jake would be able to consent himself, clearly at age 15 he should be able to provide assent. I agree that it would be very beneficial for the psychologist to interview Jake individually to really understand his perception and wishes.

    2. Kate Eshleman

      These are good points. Speaking with Jake alone would likely be very helpful, and other comments suggest there is video of that somewhere. Regarding age of consent, it certainly becomes tricky with a situation like this if a patient and his parents would disagree about moving forward, with the child wanting to and the parents not, given the expense of doing so, that is mostly out of pocket. If that were to be the case, the psychologist would certainly have much more work to do.

    3. Ashley Moss

      I appreciate your thoughts regarding differences between age of consent for medical vs. mental health, particularly in this case in which Jake is past the age of consent for mental health, but not medical (in the state of Washington). I do wonder how Jake’s willingness to provide consent to a mental health provider for parental involvement in this conversation would impact approach to care and effectiveness of the intervention for a psychologist vs. medical provider with regards to discussing fertility issues.

  5. Kristin Frazier

    I think the psychologist did a great job of tackling a sensitive subject and maintaining a neutral attitude. It’s clear that the parents and teenager are still reeling from the recent brain tumor diagnosis and are having a difficult time adjusting to having to discuss fertility preservation. I like how it was emphasized that there are no right and wrong decisions, only figuring out what is best for their family.

    1. Elizabeth Lachat

      I agree that the psychologist did a great job in remaining neutral and unbiased which could ultimately assist the family with feeling comfortable with whatever decision they choose.

    2. Courtney Lynn

      I agree that he remained unbiased. You recognized that the family was distressed and I agree with that as well. Maybe he could have reflected how the family was feeling before jumping into the goals.

    3. Leigh Hart

      I agree. This is where it gets tough assessing what information they are ready for, yet providing the patient and family all the information they deserve.

  6. Lacey Ballew

    The Strategies I liked in the discussion were:

    1. Dr. K’s approach in creating the setting: normalizing/non judgmental “no right and wrong answers”
    2. Assessing the Patient/Family’s understanding. The father said they are still trying to digest “brain tumor” and the rest (fertility) throws them for a loop. Family does not appear on the same page as father says to wife “you are for it, but do we have to be talking about this right now? and “I feel pushed”.
    3. Setting Goals: this helped keep the conversation on track “1. Being at peace with decisions”. This allows the father’s feelings to be heard and eliminating the pressure. The second goals is: “2. Is Jake a candidate?”
    4. Providing Education: Dr. K does an excellent job explaining.
    5. One strategy I would use is more “lay terms and kid friendly objects”, such as pictures, models, etc

    1. Tomoko Tsukamoto

      Lacey,
      Thank you for summarizing the psychologist’s discussion and the strategies. I liked how he created the non-judgmental setting and spoke the goals of this meeting. Yes, I do like using pictures, too. Over all, I learned so much from this short video how I can speak with adolescent patients and their families.

    2. Rose Miller

      I agree with all that Physician did a wonderful job being non judgmental and assessing the family’s understanding. I think with the parents present and with differing views made an already difficult conversation maybe more overwhelming for the patient. Wondering if it would have been helpful to have given patient and parents basic written information prior. May be parents could have discussed together and digested some of the information and have a more uniformed response. The patient may have been able to ask more questions etc.

    3. Kathleen Culliton

      If the medical team agreed it was appropriate, the psychologist could also add, to the Dad’s concern that he felt pushed to discuss this, that a fertility preservation discussion implies the team truly hopes for successful cancer treatment with an eye towards healthy adulthood.

  7. Michelle Fritsch

    I like the format that the discussion followed. Goals, no wrong answer etc. However, I would like to see the family and teen allowed to express understanding of the topic. And printable materials for them to look back on as they are clearly overwhelmed with the situation.

    1. Stacy Geisert

      Michelle,

      I agree, Dr. Klosky did a great job formatting the discussion and making it easy for the family to follow along which I think is imperative as the family is very overwhelmed by all of the information they have received in the last several days. I think establishing goals for the conversation lets the family know that his tactics are not to force the family or Jake to make a particular decision. This may help put an anxious family at ease when talking about a difficult subject such as fertility with their adolescent son who has been newly diagnosed with cancer.

    2. Elise Oberman

      I totally agree with you. I felt like there were many times in the discussion where a pause would have been appropriate, followed by asking the family and Jake if they had any questions or thoughts about what they just heard. I think it is a lot of information to digest for a family. Also, Jake never really spoke. You get the sense that mom wants FP, dad is still in shock, and then Dr. Klosky starts to give them all of this information. I think it would have been helpful to just ask, “Jake, what do you know about fertility and the treatment you are about to receive?” As well as the question, “Have you thought about potentially wanting to have children in the future?” I think these questions would be able to provide a lot of direction to the conversation.

  8. Anne

    I liked Dr. K’s format of setting the agenda-telling them what the goal was of the discussion and was clear that he wanted to educate them to make the decision that was right for them. I echo comments above that it was important to emphasize that there was not a right or wrong answer.
    I was concerned that Dr. K mentioned that if this was not the right time for them, they may consider it later as later may or may not be an option depending on his regimen and fertility status after treatment.

    1. Lacey Ballew

      You make a good point on considering timing, Anne. As I learn more, I wonder what the time frame would be on making this decision.

    2. Fred Wilkinson

      I wondered about this as well Anne. The family may not need to make the decision that day, but I would think that it would still be time limited.

  9. Anne

    I agree with Karen that Dr. K needed to get Jake engaged by directly asking him what his thoughts were or if he had any questions.

  10. Stephanie Fortt

    I appreciated Dr. K’s calm reassurance and how he went about outlinging the goals of the session. Also the fact that he was able to assess the family’s understanding. I hope that at the end of the session he would ask them to tell him what they understand to see their level of processing the information as they are already trying to absorb/process that their son has a brain tumor and what the treatment consists of.

    1. Rebecca DiPatri

      I also agree. The psychologist’s calm demeanor and empathetic listening help to keep the difficult conversation continuing among all member of the family, potentially with differing opinions on the subject.

  11. Angela Nicholson

    I agree with the previous comments on the non-judgmental and calm approach taken to chat about fertility preservation. It felt like we definitely didn’t get the full conversation.

    1. Fred Wilkinson

      I struggled as well with not getting more of the conversation. While the psychologist set things up well, I would like to see the rest of the conversation. I have had this talk with may of the teen boys in our program and would love to see his approach.

      1. Linda Rivard

        I agree – the psychologist set up the conversation very well. The family appeared overwhelmed and the young boy looked dazed – maybe uncomfortable in front of parents or still recovering from brain surgery? Agree – this conversation should not end with video and the conversation should be revisited with parents and young man seperately. This conversation should be a team approach – include a fertility navigator to better explain the process of sperm donation? I strongly believe there can never be too much information and you can never revisit the topic to many times – the family/patient is overwhelmed and need to process at their own individual pace – you never want the patent to have regrets.

  12. Courtney King

    I liked the way Dr. Klosky set the pace of the discussion, first explaining the goals, speaking of the personalization in the family in respect to “there is no right or wrong answer.” The parents were obviously on different sides as stated the mother was for fertility preservation and the father was more shell-shocked and admitted his not understanding the need to discuss this now right after diagnosis and surgery. I also agree that after the conversation with Jake and his parents, that another discussion could be held with Jake alone, allowing him the parental freedom to determine his understanding and ask any questions he may have.

    1. Elise Oberman

      I agree Dr. Klosky did a great job outlining the goals and I liked how he let the family know there was no right or wrong answer in this decision making process. I feel that it would be important, as you mentioned, that Jake have a separate discussion to assess what he even knows about fertility and masturbation to be able to sperm bank. This would also be a good opportunity to address and reinforce using condoms to prevent STIs.

      1. Loraine LLanes

        I couldn’t be more agree with Elise, in the sense that it’s not only relevant talking about sexuality for the fertility preservation procedures, but also cardinal for promoting sexual and reproductive health in prepubertal children, adolescents and young adults. In my opinion, it reflects a health preventive approach into the specific field we are working to.
        A useful perspective could be not to consider sexuality as a “mean” for achieving a positive fertility in the future, but a field of expression, motivation, development, responsibility, human relationships through lifetime, and global health and quality of life.

  13. Cheryl Smith

    I feel the psychologist did a great job at receiving feedback about what they already know and heard from the doctors. I also appreciate his asking what they know about Fertility, so he can start where they are. He established a goal for education and information and validated feelings related to this distressing time.

  14. Stacy Geisert

    I think there are a few strategies that would come in handy during this discussion with an adolescent patient and their family. First, I think it would be helpful to utilize pictures and/or visual tools to discuss the possibility of infertility and the benefits/risks of sperm banking. Both Jake and his parents could use these resources later as they contemplate their options. It would also be beneficial, if possible, if Jake and his parents could take a tour of the area where he would be depositing his sperm. It could help to be familiar with the area and space prior to making a decision to preserve sperm. Finally, I think it is important to provide patients and their family’s with written material that they can reference in the future. After they have had a day or so to process this information, they could reference these materials and use them to answer any lingering questions they may have.

  15. Cathy Gibson

    At first I was concerned that Dr. Klosky wouldn’t address the reason why it was important to make a decision right away, but then he did a great job of explaining Jake’s components of his treatments and how they would affect his fertility.

  16. Courtney Lynn

    Dr. Klosky is, of course, wonderful! He did a great job asking the family what they know and asking permission to provide information to them. One thing I would incorporate is the use of visuals or handouts. I am particularly interested in health literacy and think that just using a verbal means of communication can result in a lot of lost information. It would be important to have materials that the parents can understand as well as information that is developmentally appropriate for the child. Jargon and big medical terms should be limited to promote understanding. It would also be a good idea to check in with the family for their understanding throughout the consultation and to use a teach-back method to ensure comprehension. The family is clearly in distress so they may not even be listening to what he is saying, which would impact their decision-making abilities.

    1. Erin Donnelly

      Courtney-I am in total agreement with all that you’ve said… there should be visual references & the use of medical jargon shouldn’t be used whilst speaking to the family. I love utilizing the teach-back with my clients

    2. Erin Donnelly

      Courtney-I am in total agreement with all that you’ve said… there should be visual references & the use of medical jargon shouldn’t be used whilst speaking to the family. I love utilizing the teach-back with my clients, as it allows me to assess what they do/do not understand.

  17. Kathleen Hinkle

    If this patient was pre-pubescent, I would use similar strategies to Dr. Klosky, at least initially. I think he does a great job acknowledging the stress on the patient and family during this difficult time, and their confusion about the impetus of the discussion. I would also inquire about what they already know about fertility preservation, just as Dr. Klosky did. People may have prior experience with infertility, or perhaps even fertility preservation, so it’s important to gauge what they know. I really liked how Dr. Klosky set “goals” for the discussion. However, for pre-pubescent patients, sperm banking is not an option, so I would explain to the parents that fertility preservation in this age group is different. I would discuss the basics of testicular tissue cryopreservation (TTC), and that it would be available only through an IRB approved research study. It would be important to stress that this technology is still considered experimental, but with advancements in science and assisted reproductive technology, will hopefully be utilized in the future to produce a pregnancy. This scenario actually happened at my hospital recently. We do not have a TTC research study, but a family was very interested in exploring it for their toddler. I reached out to Seattle Children’s Hospital where they have a program, and we likely will coordinate TTC for this patient in Seattle in the near future. I think, getting back to what Dr. Klosky said, the goal should be providing the family with enough accurate information that they can make a decision they will be at peace with.

    1. Lisa Cummings

      I appreciate the concrete example you have given regarding identifying the desires of the family and exploring and coordinating the options for your toddler patient. I agree with the fact that the goal is to provide enough accurate information so that the patient and family can be at peace with their decision.

  18. Deb Schmidt

    I really liked how Dr. Klosky initiated the goals of their discussion in the beginning of their discussion. I think that this is such an incredibly stressful time period for the patient and family that having information/resources to take away from the meeting may be helpful for further review. I also think that offering some alone time with the patient should also be offered. Sometimes the patient’s parents can be pressuring.

    1. Kirsten Vi

      I agree with your comments. I think that sometimes with all of this new information, the patient and family cannot always take in and process the information in a way that allows them to make an informed decision. Providing notes about what was discussed may be helpful for the family to make a decision moving forward. Also, I would note that talking to the patient directly about his concerns, understanding, etc. may help when parents can overwhelm and pressure.

  19. Elise Oberman

    In this meeting with Dr. Klosky and the family, I appreciated the way he started his discussion with the family by assessing the knowledge of the family (though he didn’t really assess Jake’s knowledge separately), outlined the goals of the conversation, and explained that there was no right or wrong answer. The family and Jake seemed like they were still shocked at points throughout the discussion, where I feel a pause and moment to ask if the family and Jake had questions of what was just said might have been helpful. As many others pointed out, I think different learning methods would be helpful such as a video, pictures, or handout for the family and Jake to reference. In working with families of pre-pubertal children, the discussion shifts to experimental methods of preservation such as OTC and TTC. Both with pre-pubertal and adolescent patients, you are asking them to think about and consider their future in a way that may not have been thought about before. I think it is still important to discuss with young kids (even who aren’t of the age to assent) that their parents are going to help make a decision for them to allow them to make a decision about being able to have the option to potentially have children in the future. I think there is a developmentally appropriate way to discuss fertility and what that means to an 8 year old (or younger even) as well as a 15 year old (or older). In Jake’s case, it is important to also have a separate discussion with him to assess his knowledge of fertility, masturbation, sperm banking, etc.

    1. Raquel Begelman

      Elise, I agree that there is a developmentally appropriate way to discuss fertility to Jake and the video did not show that. But someone commented that there is more episodes to this video. I have a 12 year old boy who gets very embarrassed, and he would appreciate a more private conversation with out his parents.

  20. Raquel Begelman

    Unfortunately, Many converstaions start this way.
    1. Family distressed with new diagnosis of cancer
    2. Health care team discusses choices
    Dr. Klosky addresses their concern about having to make a decision for Fertile preservation. He explains and validates that the decision they make, will be right for them. Dr. Klosky continues to discuss the effects of Jake’s treatments on his fertile, which he could have used a little more layman terminology. It appeared to be over Jake’s head. Even though the parents were making decisions, Jake is the patient and should be spoken to at his educational level. I also agreed that models or video or handouts would be great teaching tools. Jake & his parents are listening very attentively, but if they visual learners they conversation is over their head.
    At certain points, Dr Klosky could have also asked if they had any questions. Even though this video was less than 5 minutes, if was full of details that are necessary for deciding about fertile preservation for Jake.

  21. Erin Murphy-Wilczek

    I think Dr. K highlighted the goals of the session as well as asking what they know about the subjects and then went into detail explaining how components of Jake’s treatment would effect his fertility and what options are out there for him. I agree with many of the posts above whereas there could be more done to see how Jake’s comprehension is of how treatment will effect his fertility and what his options are. I also believe like many have stated here that there should be handouts to go over what was just discussed in the session as many times feelings of being overwhelmed can later leave out key parts of the conversation.

  22. Lisa Cummings

    I believe the question asked what strategies I would use to give age and developmentally appropriate information to prepubertal children.

    I would assess the cognitive stage of the child. An infant, toddler or young school age child is not able to think about being a parent. Even older prepubertal children are concrete thinkers, but are not able to think in the hypothetical situation regarding parenthood and understanding the future. With younger children, the conversation would be with the parent. An older prepubertal child would need to give assent, but a toddler would not be able to give assent.

    I would assess the parents willingness to be involved and listen to the information presented. Often times they are solely focused on the current health of the child, and not the future health of the child. They need repetition and gentle guidance through this additional stressful information

    I would assess where the child is with regard to tanner development. I would explain to the male child/family that it is likely that he will develop physically normal and will be able to function sexually, but that the effect of treatment on his germ cells will likely cause infertility. I would also explain that we would be evaluating his growth and development over the years. I would explain that testicular cryopreservation of testicular tissue is considered experimental, but that advances in the future may make it possible for use in the future. In the female child I would explain that development into puberty will be monitored as she may not enter into puberty as the development of puberty requires the oocytes. If she does not enter puberty, hormones can be administered to assist this development, but she may still be infertile. If she does enter puberty, her window of fertility may be shortened considerably. I would stress that collection of ovarian tissue is still considered experimental, but that a child has been born from frozen ovarian tissue.

    I would consider the ethical issues. Using cryo-preserved testicular and ovarian tissue is still experimental. Patient/family would need to be referred to a facility with an IRB protocol. It is expensive and requires anesthesia. The surgery could be combined with other surgery to minimize time and expense.

    I would make a plan to follow the child through progression of puberty. I would ensure that thy are monitored regarding sexual function, body image and relationship and intimacy concerns.

    1. Kathleen Hinkle

      Hi Lisa. I like the strategies you outlined for approaching a patient who was pre-pubescent. It’s important to consider the ethical implications, for sure. I think it’s also important to assess the family’s cultural and/or religious beliefs. Diving into a discussion about experimental options such as TTC or OTC can be overwhelming for any family, and can be distressing for those who do not support assisted reproductive techniques because of their religious beliefs. It gets tricky, because time is usually of the essence and decisions often need to be made fairly quickly. I don’t have a lot of experience with these conversations, but I think a good starting point would be to explain that experimental options for FP exist and gently ask the family if they would like to hear more about those options.

    2. Laurel Heath

      Lisa, I appreciated your take on this issue and that you addressed the posed question of how do you provide age/developmentally appropriate information regarding to fertility preservation in the case of a pre-pubertal child. In those early stages, the family and patient are very overwhelmed. They’ve just been given a diagnosis that completely alters life as they know it.

      I think providing very basic information is helpful. Recognizing that their child should move through puberty normally (males), but we will monitor along the way if things are progressing as they should. For females, discussing risks to fertility but also overall ovarian function. Acknowledging that at this current state their child would not be a candidate for sperm cryopreservation or egg cyropreservation based on their early stage of puberty.

      I’d present very basic information about tissue preservation and the associated risks and potential benefits. I’d leave a lot of time for the parents and child to ask questions and likely provide age-appropriate resources that may help them understand the information better. I think it is extremely important to not only touch on fertility risk but also premature ovarian failure for women as this is likely to be a more immediate concern in the coming years.

      1. Loraine LLanes

        I completely agree with Lisa too, and I appreciate a lot the consistent way in which her focus the different and very complex aspects that we must consider in a strategy for facing the fertility preservation with prepubertal children.

  23. Rose Miller

    I agree with all that Physician did a wonderful job being non judgmental and assessing the family’s understanding. I think with the parents present and with differing views made an already difficult conversation maybe more overwhelming for the patient. Wondering if it would have been helpful to have given patient and parents basic written information prior. May be parents could have discussed together and digested some of the information and have a more uniformed response. The patient may have been able to ask more questions etc.

    1. Sara Soares

      Great idea, give them something prior to the conversation to be somewhat informed and prepared to ask questions instead of being blindsided and overwhelmed on top of the cancer diagnosis.

  24. Erin Donnelly

    I think that psychologist did a terrific job in reviewing the objectives he would to discyss tlike to be achieuved at that visit. I also like othe fact that he checked in with the pt and the parents too, as this allows him to obtain a baseline on the family which is so important when it comes to patient education

  25. Erin Donnelly

    *please disregard ^^ previous post; it sent by accident & unable to delete it…

  26. Erin Donnelly

    As most have posted, I, too, think the psychologist did a terrific job and I liked that he reviewed the objectives he wanted to discuss during the first visit with this family.
    It was great that he asked how they were feeling as well as asking what they know about FP- this allows him to learn their baseline which is important when engadging in patient/family education.
    As others have mentioned, I don’t think he should’ve used medical jargon. This family is overwhelmed as it is & utilizing medical jargon, I think, will only add to them being overwhelmed.
    I believe this is only a snippet and not the complete session that we have viewed. I would hope that the psychologist meets with the patient & his parents separately allowing everyone the opportunity to share feelings that they may not necessarily want to share in front of each other.

  27. Patricia Sullivan

    This discussion appeared very difficult for the family- a cancer diagnosis is hard enough but the talk of losing fertility seems to hit people very hard. He acknowledged this with the family but they appeared numb and the father angry. It’s important to give families all the information but it sure is hard

    1. Jennifer StClair

      These are difficult conversations and sometimes parents can get angry because you are asking about fertility shortly after telling them their child has a life-threatening illness. Before staring such a conversation, I try to make sure I understand the patients age, developmental stage, and what options may be available to the patient in light of his/her specific treatment plan/prognosis. Whenever possible and when appropriate, I let parents of adolescents know I will be talking with the patient individually about this as well. Despite all this, the conversation can be difficult and more than once I’ve had a family refuse any more discussion about fertility preservation because they felt they could only focus on the treatment of the child’s cancer and nothing more.

  28. Jennifer StClair

    The father’s statement that he feels like he is being “pushed” towards this issue when he wants to focus on the brain tumor diagnosis is very realistic. I liked how the psychologist skillfully laid out the importance of discussing the impact of treatment on the patient’s future reproductive health while delineating that there is no “right” or “wrong” choice…only the family’s choice and the choice that feels right for them. I’d hope at the end of the conversation the psychologist takes some time to speak with the patient alone as well and solicit any questions or insights from him that may be more difficult to verbalize in front of his parents.

  29. Janelle Donjon

    Even though I liked the way the psychologist presented the information and appreciated his calm nature, I could not help but think a “stop” was needed following the father’s initial comments. It might have been helpful to ask the family if they needed additional information from the treatment team before continuing with this conversation. I wondered how much the patient and his parents understood about the treatment plan before he reviewed it. I also wondered at his continued use of the term “fertility preservation” with such a young patient. If I used that term with my own children, they would have no idea what I was talking about. With a younger patient, it might have helped to acknowledge the awkwardness of having to talk about this with your parents and maybe explain why it was important for them to be there, too. I would think being able to use technology to your advantage with this patient would be helpful – either having a tablet with information or a You Tube video that he could watch.

  30. Kate Eshleman

    My initial thought when the video began was surprise that the psychologist was a new member of the team introducing all of this information, though it then also occurred to me that as a new diagnosis, all of the team members are essentially new. I thought he did a very nice job leading this discussion. I like how he outlined the goals of their time together, and that he specifically pulled the child in to the conversation. I thought he did a very nice job describing the three aspects of treatment and the potential impact of radiation and chemotherapy on his developing body. Very nicely done!

    1. Kate Eshleman

      I forgot to mention I also liked how he started by asking them what they knew.

  31. Rebecca DiPatri

    After a brief introduction of the topic of infertility, I like how the psychologist listens and then introduces the goals of the meeting to the entire family. I also appreciate how the psychologist acknowledges the difficulty of having the fertility conversation in the context of a new cancer diagnosis and helps to establish the important rapport building with all members of the family, particularly the patient for future fertility and sexual health survivorship discussions.

  32. Kirsten Vi

    I agree with all of the comments above. I think the psychologist did a great job of meeting the family where they were at. I appreciated that he started by getting an understanding of what their thoughts and concerns were and then normalized the conversation and noted that there was not a right or wrong answer. I also liked that he broke down his treatment and options in terms that he may understand better than what has been previously discussed with him. He remained calm, not intimidating, and really portrayed that the decision was ultimately theirs, he just wanted them to be well informed. I think he approached this conversation well.

  33. Loraine LLanes

    As other colleagues have express before, I totally agree that the frame in which Dr. Klosky focused the interview was mainly useful, respectful and gentle. I think that sharing information in a warm and soft way, sustaining the eye contact with each member of the family, exploring their general information about the topic, and insisting in the unique way each family take a decision considering their specific scenario, were very good strategies to face the issues related with fertility preservation. Especially in the first encounter, when the patient and the family are facing a cancer diagnosis and treatment, frequently are very overwhelmed about it, and probably they are doing a lot of adjustments in order to face the best they can this complex situation.
    Besides that, I think that the information shared by the Psychologist about the mechanisms in which radiotherapy and quemotherapy can affect the sexual and reproductive aspects, was well managed in terms of the content. Even when it was explained using medical terms, it was integrated in a rational and comprehensive frame that were clearly resumed in two main goals. I think that this probably had a good impact on the comprehension of the general content.

  34. Loraine LLanes

    Nevertheless, it was be very clear during all the interview the astonished and distressed gestural expression of the three members of the family. It was very interesting that the only member who was speaking was the father. In some familial dynamic it is frequent that there is one emergent member, who supposedly is going to express the familial perspective. But this could masked the real feelings and specific needs of the other members of the family: in this case, neither Jake nor the mother pronounced a word, even when probably (considering the extra-verbal expressions) they both have a close relation, and the Mother probably has a very important role in terms of the emotional supporting for Jake (she was near him, taking their hands). So, it would be very useful to explore the understood information, and especially the feelings and meanings built about the actual situation, in each of the familial member. It was probably done in the following part of the interview.

  35. Loraine LLanes

    Answering the request about the strategies I would use to provide appropriate information about fertility preservation to parents of a pre-pubertal child:
    – Considering the impact of the emotional state over the assimilating of useful information for a decision making process, I would first explore in each member of the family (maybe all together and individually, depending of what is needed), their affective situation and needs regarding the cancer diagnosis and treatment. In case of individuals or family dynamics who or where is difficult expressing feelings, it would be useful to use a “mirror” technique in wich the psychologist expresses his considerations about the feelings and worries he has just identified, to open the expression of this feelings and worries.
    – Considering the relevance of talking about fertility issues as soon as possible before the oncology treatment, I would introduce information about it, adapted to the individual situation (considering biopsychosocial aspects: age, instruction level, religion, cultural aspects, gender, diagnosis and prognosis), in a comprehensible language (without unnecessary medical technicalities) for the adolescent and his family, in a process of different stages. It is probably very useful to organize the information, beginning by general aspects, and then advancing through to some specific aspects, to finish with resumed information emphasizing the most relevant aspects. I agree with my partners that it is usually very supportive to be helped by graphic information (videos, schemes, drawings, etc.).
    – It is necessary to check systematically with the patient and his/her family the complete understanding of the given information before they asent and consent of any fertility conservation procedure. This could demand more than a single interview. It is very important too that they all understand the risks and benefits of their decision. That is why I see this intervention as a process where there must be very cleared aspects related with human, sexual and reproductive rights of the implicated.
    – I think it is very important too, to establish some ways of communication between the patient, his family and the Psychologist and the Health Team (phone, e-mail, others), in order to facilitate any need of information that could rise any time . Considering the important of timing for a decision making process related to the fertility conservation procedures, it is very relevant to optimize the time the patient and his family need for clarifying any doubt (as soon as possible). This could have positive effects on their decision.
    – Finally, I think that even when the family decision will be negative for a fertility conservation procedure previous to the beginning of the treatment, it is very important to sustain a systematic contact with them in order to continue sharing information and promoting sexual and reproductive health during the complete process of health care.

    1. Kathleen Hinkle

      Loraine, you make excellent points and I like your approach to a pre-pubescent patient in this instance. While it is often hard for a teenager and his/her parents to think about future fertility and parenthood at such a stressful time, it can be even more difficult for parents of younger children who haven’t even started thinking about that yet. I really appreciate your point about keeping fertility and reproductive health a part of the conversation throughout treatment and into survivorship. Studies show that, whether or not a patient/family choose to participate in a fertility preservation measure before treatment, it is vital to at least have the conversation. The initial FP conversation lays the groundwork for promoting optimal reproductive health in the cancer survivor.

  36. Michelle Broussard

    I absolutely love how he makes his point “clear” and gives the feeling of just relax and breath when he states that he wants them to leave at peace with their decision and there is no right or wrong. It would make me feel much more at ease with meeting because of the unknown. I like how he describes why fertility preservation and things to expect. Excellent job

  37. Burton Rebecca

    It is true that the doctor did an excellent job of explaining the options in a non-judgmental way. However, I thought that we as oncofertility specialists were supposed to be advocating a bit more openly for fertility preservation, not just awareness. I was surprised that there was not more discussion about the potential for regret regarding missing this important window in this boy’s life. The family is obviously stressed out by the cancer diagnosis, and I’m sure the kid is horrified on a basic level that he has to have a talk like this with his parents, especially since he was hiding the fact that he was already sexually active. It would be easy for everyone to just bury their heads in the sand, based solely on awkwardness, embarrassment, and from being overwhelmed by the diagnosis, and miss this once in a lifetime opportunity to protect this kid’s genetic legacy. I would have liked the doctor to take the bull by the horns and tell everyone that they will never get another chance to preserve his chance to have biological offspring, regardless of how important or unimportant it may seem to anyone now.

  38. Ashley Moss

    I appreciated the providers non-judgmental approach to making this difficult decision, and how he appeared to intentionally involve Jake in this process, without seeming to put pressure on him to speak immediately regarding this thoughts and feelings about this topic immediately after it was introduced. While I appreciate that the provider assessed for the family’s understanding of fertility preservation and options, there seem to be missed opportunities for presenting material in a more teen-appropriate manner. It may be helpful to integrate opportunities for repeat-backs or other questions assessing comprehension throughout psychoeducation. While this clip is fairly brief, I do think it would be important to explore familial/cultural/spiritual beliefs and how that may be guiding or informing their perspective. Given that the topic of fertility/sexual health can be potentially uncomfortable for patients/families to have together, it may be beneficial to assure Jake he would have an opportunity to discuss these topics individually without his parents present. Finally, while watching the video, I wondered how frequently patient’s understanding of broader sexual development and their sexual activity are assessed and how this might be integrated into the conversation regarding fertility.

  39. Linda Rivard

    Working in pediatric side of oncology – this is a good start to initiate discussion. Unfortunately, pediatric cancer is more aggressive and leaves a smaller window to explore or start fertility preservation. Although fertility risks are discussed before treatment and depth of explanation is very provider dependent- I would would say most of my patents/families did not “hear” or at that moment comprehend the topic – they want to save their child’s life as most of our patents present in very critical condition. Another obstacle is that experimental fertility preservation may require care at another institution and providers are afraid of losing their patients to that institution. So we need better collaboration of care!!

  40. lauren Martino

    I like the way described the mechanism of action of the chemotherapy and explained how it affected sperm production. I think it makes it easier to understand why this is happening. By comparing it to other side effects such as hair loss, or slow fingernail growth, it explains how the destruction of sperm cells is caused but also highlights that this can be a more permanent side effect.

  41. Anastasia Brown

    I really like me that Dr Klosky kept directing the conversation at Jake and calling him by name. The family seemed very anxious and asked different points of preparedness for this discussion. I liked that he asked where they were at and then took a step back to try to help them be on the same page. Some follow-up discussion is obviously needed and having time with the parents and Jake separately is needed. The parents were easier to read but Jake seemed a little checked out and overwhelmed.

    1. Jean Melby

      I also appreciated that he spoke in a quiet voice. It reminded me that when you want to get and keep people’s attention, it may help to speak quietly so that they have to focus to hear you.

    2. Allison Winacoo

      I agree that Jake seems overwhelmed. I find that some children and adolescents will seem disengaged during the conversation but may actually be listening intently. Maybe Jake would bring up the conversation with his parents later, or maybe it will be necessary to reapproach him in a few days.

  42. Jean Melby

    I agree with everyone’s comments that he did a good job. My very simple answer to that huge question posed is that you would simply acknowledge that a lot of information was given over a short period at a hard stage in their lives. They aren’t expected to remember or understand everything at first. I would then schedule a repeat visit a few days later to review things and provide a time for some answers to questions they had a bit of time to consider.

  43. Renee Martinez-Epperson

    He did an amazing job! I hope we get to see more specialties and how they engage with the family.

  44. Renee Martinez-Epperson

    He did an amazing job!

  45. Allison Winacoo

    I thought this was interesting because I previously did not really see fertility preservation discussions as being part of the psychologist’s job. At my institution, social workers are involved in securing funding for patients who which to pursue fertility preservation methods but I have not seen psychologists playing a role. I think we focus a lot on what we don’t have-we don’t have in-house reproductive endocrinology, we don’t have medical staff who specialize in oncofertility, etc. This is a good reminder to think about what we DO have-lots of providers from different disciplines who can initiate conversations with patients and families about their understanding, goals, and wishes as they relate to fertility. I think the psychologist can definitely draw on their expertise of recognizing, exploring, and validating distress with patients and families.

    1. Elizabeth Robinsion

      After watching this video and additional videos in this vignette within Dr. Klosky’s lecture on communication, I had a similar reaction. How could our psychology team be more available and involved in these discussions to provide support to patients, families, and medical staff who are all juggling at lot immediately following diagnosis? I believe our team would open to this, the challenge would be timely communication to involved psychology as fertility preservation discussions are often one of many boxes to check in the rush to start treatment. Brain tumor protocols often allow for a brief pause between surgery and radiation, however with other diagnoses (ALL, etc), we are often hanging chemo as soon as the diagnosis is confirmed. Are there other pediatric centers where psychology is involved in these discussions as their standard of care?

      1. Giselle Perez

        I fully agree – I don’t believe that these discussions are being had in our clinic, and i’m wondering how we can work towards changing that…

      2. Rebecca Babb

        This has been on my mind as well. I work in a pediatric oncology setting and the overwhelming majority of our patients have ALL. These conversations have historically been left to the medical team, but they don’t seem to happen consistently and our nurse navigator/oncology therapist team is trying to find a way to create a more standardized way of approaching it.

  46. Tamar Tenenbaum

    The psychologist did an amazing job of explaining fertility preservation to the family. I really appreciated how he emphasized that there is no right or wrong decision. There is just what is right for this family. I am definitely going to use that with families that I work with in the future. I would have liked to hear more from Jake and his understanding of fertility preservation.

  47. Giselle Perez

    I appreciate the manner with which the provider is approaching this discussion of fertility preservation. I’ve heard cases where AYAs feel “bullied” into making a quick decision, sometimes leading to decisions they ultimately regret (such as foregoing preservation due to feeling pressured to begin treatment asap).

  48. Julia Leavitt

    I did like how the psychologist approached the topic. However, having been in very similar conversations with adolescents both male and female I think its important to explore with the patient how they are feeling. I often also explore with the patient if they may have another adult or friend in their life that they want to speak to about this topic. Many adolescents have never spoken to their parents prior to these conversations about their own thoughts on their future and fertility. Additionally, due to the age of these patients many are struggling with their own sexual identity and conversations like this with their parents can create a very uncomfortable or unsafe feeling for the patient.

  49. Annie Lopez

    Also agree that the psychologist did a great job in providing the information. While watching the video, I focused on the teen and it seemed to me he was not able to ask questions. Father was very involved in the conversation but teen nor mother were able to voice how they were feeling.

  50. Amber Lamoreaux

    I learned a lot from this video. I liked the way the psychologist spoke with the patient and his family. He made a difficult subject almost look easy and dealt with the different feelings of every family member. Even with all of these methods being used, Jake still seems understandably overwhelmed. Hopefully the continued conversations will help him more.

  51. Heather DeRousse

    Psychologist did a great job of listening to the father’s concerns and provided him with in depth information to help then with their decision

  52. Heather DeRousse

    The psychologist did an awesome job with addressing the father’s anxiety. He offered great clarification regarding expectations for sperm banking and allowed the father to understand it is the patient’s choice and right to bank.

  53. Rebecca Babb

    I thought this psychologist did a wonderful job with this adolescent and his parents. He handled a few tough moments, with the Dad and the teen, very gracefully and was able to engage the adolescent. I really didn’t feel that he was pushing them, but rather just trying to make sure they were making an informed decision.

  54. Eileen McMahon

    I liked Dr. Klosky’s approach and especially that he said there are no right or wrong answers. However, I felt that he could have provided us with an example of how to get the adolescent alone to speak with him directly. I find this is never an easy task as you may upset the parents. I wanted to see how another professional managed to do this. It is unfortunate that was not part of this example.