Module 2 Discussion

Topic: Bringing up fertility and family building options in survivorship

Risk of infertility and fertility preservation are not always discussed with patients before treatment. In this case, Jose is a 25 year old survivor who did not receive this information. As you watch the social worker discusses fertility and family building options with a patient, think about how you would discuss this topic with a survivor who had not received information about risk of infertility or fertility preservation options. What would you do the same or differently as the social worker?

154 Comments

  1. Deb Schmidt

    While I think that this is such an important topic, there should also be some discussion with medical team and between medical team and the patient.

    1. Ashley Flynn

      I agree. A member of the medical team should get the conversation started, but then it would be best for this patient to meet with a reproductive endocrinologist for testing and to discuss options. At this point in time, we don’t know his status of fertility. He may have plenty of healthy sperm!

      1. Michelle Broussard

        I agree, meeting with a reproductive endocrinologist to go over his options in detail and evaluating him when necessary after cancer tx is probably the best way to handle this. I think that she apologized was appropriate in this situation. I like that she said that 12% of normal people deal with infertility also. Now that the treatment is completed he may feel more relaxed to absorb all this info whereas before he would have been overloaded with emotions and information. Discussing fertility as soon as you receive a cancer diagnosis should always be preferred.

        1. Melanie Hericks

          I agree with the suggestion of having him meet with a reproductive endocrinologist as well. We recently had a similar situation during a survivorship visit and suggested that the patient meet with the reproductive endocrinologist. I also think that it was very important that she apologized too. It was the start of building some type of relationship with him and building trust with him to have ongoing discussions to be able to move forward.

        2. Angelica Rodriguez

          I agree. Discussing fertility upon diagnosis is necessary, but often overlooked due to the urgency of initiating treatment asap. All involved healthcare providers should implement this into their practice. My facility has a built in alert within our EMR during a visit to prompt the physician, but not all team members. A 2 minute discussion and 1 hour trip to the fertility specialist can make the difference of a lifetime.

          1. Leigh Hart

            Building in an alert into the record is an interesting approah. We are asking for consults to be entered for our fertility team to be able to approach families. But at the time of a diagnosis getting entered into the record having an alert fire might trigger that consult to occur.

          2. Kristen Vi

            I think this is a great way to approach this issue, Angelica. When I previously worked in Bone Marrow Transplant, there was such an urgency to begin treatment that fertility conversations were often overlooked. I would be interested to know if the alert in the EMR has helped these conversations happen more often than not.

          3. Connor Moltzan

            An alert for all patients of reproductive age? That would be extremely helpful and something to advocate for within whatever agency I end up working for if it is already not implemented. I can’t imagine it would be that difficult to program, and it would be a simple fix to get to such an important topic.

    2. Derwin Gray

      I certainly agree. It’s unfortunate that this patient underwent treatment without any consideration for his future fertility. This is something that should definitely be addressed when the patient is initially given options. As an OBGYN resident managing gynecologic cancers, I often find that future fertility significantly changes treatment plans.

  2. Stacy Geisert

    As this is a very difficult conversation to broach with a patient, I think it is imperative that the social worker first apologized that the patient did not receive information on fertility prior to starting his cancer therapy. Since the patient mentioned his disappointment and frustration with not having received this information prior to undergoing treatment, I believe it is important that the health care professional address this frustration and recognize that this was a disservice to the patient. I think this interaction helps develop rapport and trust with the patient as it is indicated that you have their best interest in mind, setting the tone for the remainder of the discussion and future interactions.

    Just as the social worker did, I would mention the various options for family building available to the patient. In addition, I would discuss the possibility of conducting a semen analysis to determine what the patient’s current fertility status is. This information may help tailor future conversations regarding which family building options are available to specifically to this patient. Finally, I think it is great that the social worker offered to have the patient’s girlfriend return with the patient for a future discussion so that they could discuss the patient’s family building options as a unit. As always, it is important to keep an open dialogue with the patient and provide them with any necessary or additionally requested information so they can make the most informed decision.

    1. Eileen Seltzer

      I agree with your comment. I think the social worker apologizing in the beginning was important. I believe it would be helpful to ask the patient what his understanding of his options are and what his concerns might be (including his cultural and religious beliefs that could factor into the discussion). I was thinking about the semen analysis as well as a way to find out what his current fertility status is, not knowing where he is since starting treatment. Good discussion with everyone.

      1. Kathleen Culliton

        I agree that many patients may feel like this subject was not brought up prior to starting treatment. Many fertility discussion are quick and maybe not in depth because of the intensity of new diagnosis discussion. Even if patients received some information, it could have been forgotten and not understood. People need to hear new information several times before truly absorbing it. One thing that could be added to this social worker’s discussion could be written info for her to point to as she discusses each of the family building options to better engage him and for him to keep and review.

        1. Elizabeth Lachat

          That is a great point about providing written material. I agree that people need time to absorb information and having something they can take home to review is crucial in ensuring that the patient fully understands his options.

        2. Stephanie Fortt

          Often times things are brought up but due to the large amount of information and all of the feelings associated with hearing the word “cancer” patients often do not hear/interprete a large amount of what they are being told. I agree that something in writing that they take home would be beneficial. It may also be beneficial to have a comprehensive team discussion/meeting with the patient to discuss fertility preservation, why it is important to consider and what the proces would be.

        3. GriffinJ

          In addition to all of the great points already made about the written information, it also ensure that the partner is receiving the same information as the partner and not just the partner’s interpretation. We all know that what we say and what patients hear can be different so having written information perhaps with additional “safe websites” or resources for additional information can ensure that the patient’s support network is receiving the same information and can best support the patient.

      2. Kate Eshleman

        I agree with the comment on asking the patient’s understanding. It is certainly helpful to provide information, but I would ask first what he knows about fertility treatment/ family planning options, and build on the conversation from there.

        1. Jill West

          I completely agree with you, Kate. I understand that probably in the interest of brevity, we did not see any of the build up to this conversation, but I’d want to know where he and his girlfriend are in the family planning process, what they already know about their options, and what options seems reasonable to them at this point. Of course, I believe that informing the patient of all of their options is important, even if they think that one of them is not something they would ever pursue (e.g., adoption). I think the conversation could have been guided specifically to him and his needs had we been able to understand those, as well as his current knowledge base of the subject.

    2. Elizabeth Weisbrich

      Hi Stacy,
      I also feel that it was important the social worker apologize to the patient that fertility was not discussed prior to his treatment but felt she also should’ve acknowledged and validated his feelings as well. Building rapport is imperative and creating a space where the patient feels safe to share and supported will enhance the communication.

      1. Drema Byrd

        I agree that the apology started the conversation off on the right track.

    3. Vicky Wood

      I agree having empathy and acknowledging the frustration of not knowing about posible infertility prior to treatment is a good way to start rapport. Establing the fact that fertility status is not known is important and I think the suggestion of semen analysis is a great ideal; as she pointed out he only needs 1 good sperm to make a baby. More oppen-ended questions would however involve the client more in the conversation and allow the social worker to know more about him and his desires and reproductive beliefs. I think establishing what is important to the patient is important and should lead the conversation. Offering to include his girlfriend if the client so desires was a important component.

      1. Caroline Dorfmam

        I agree that establishing the fact that fertility status is not know is very important. I think that this is something that needs to processed with the patient because the unknown may be particularly anxiety provoking. While I think that the information provided was very important for the patient to hear, this is a lot of information! I would hope that she provided him with a written document with each of the options.

    4. Raquel Begelman

      I agree with Stacey that this is a sensitive topic and validating his feeling of frustration and disappointment builds rapport with the social worker. Often in healthcare, our response is to be defensive, but the social worker addressed his concerns and discussed options on how to proceed with his current situation.

      1. Michelle Reising

        I agree that validating his feelings was an important way to start this conversation. I also think checking in with him about how he is feeling about the issue (possible difficulty with conception) is an important part of this conversation. It could drive how the professional approaches the conversation (e.g., how much detail to go into, etc).

    5. Angela Yarbrough

      I agree that the fertility discussion is a very difficult decision to have with patients, and it provides such a disservice to patients when it is not done. This clip gives a great example of using empathy, and providing an apology for the missed opportunity. She also does a good job of explaining other options to the patient.

    6. Tiffany Edwards

      I agree with your comment as well, in regards to the social worker apologizing to the patient about the lack of information that was provided to him previously. I think along those same lines, she did a decent job of informing him that his experience is, unfortunately, not uncommon and that mention of fertility preservation while discussing cancer treatment options is still often overlooked. I think mention of this may help to normalize the patients experience but also can serve to motivate him to be an advocate for other young cancer survivors.

      In my own work, I see many single individuals who are interested in being single parents and more often than not, single women speak about not having been informed about their reproductive options earlier. Now they are very vocal advocates to and for other women, namely younger women, to receive this information in a more timely and appropriate manner.

  3. Sarah Vogel

    Overall, I was very impressed by this discussion. If this conversation occurred with patients before treatment 100% of the time, it would be awesome. I personally wish she had opened the floor a little more for Jose to speak up. For example, giving the information about how many members of the general public experience fertility problems and the fact that his fertility status was not known prior to treatment was a good starting point but perhaps then asking Jose what he knew about options for growing a family. Perhaps he is very against donor sperm, for example, but would be open to adoption. Or perhaps he has cultural or religious views about certain options. I personally find it very helpful to get a baseline of where a patient is at before talking, as it can frame the discussion.

    1. Fred Wilkinson

      I agree Sarah. I realize that it needed to be a quick video, but think that open ended questions and a good assessment of his values around sexual health would be important.

      1. Stacy Geisert

        Sarah and Fred,

        I agree that open-ended questions would be a vital addition to this discussion. As you both mentioned, it is important to discuss his beliefs and values to really tailor the discussion toward him. However, I think it is also important not to assume based on someone’s religious affiliations that they would necessarily disregard a particular option of family building. I think it is both important for the social worker to address his beliefs, but also provide him with all options available to him and see which of these options he would like to explore more. Then, she could expand on these topics or refer him to other specialists who can help him as well.

        1. Jean Melby

          Hello. Of course you are correct in that no assumptions should ever be made. In my experience it is just as much about cultural background, teachings and expectations as a mere religious affiliation. Ideally this information will be noted in their medical record. For example, some faith cultures frown on or disallow the use of donor tissue of any type. For some, discussion of donor sperm or eggs is outlawed, offensive or insulting.

    2. Alisa Barber

      Sarah,
      I couldn’t agree more with your response. It was a very good thing that she apologized but I feel that it was a lot of information given without asking questions on how Jose felt. I think by having a conversation to see where he is in thinking about a family and to see where his beliefs are would be very important things to know before having this conversation. I think most people would be very overwhelmed with all of that information given at once

    3. Carolyn Demsky

      Sarah I completely agree with your idea of opening the floor for discussion to Jose. He seemed to agree with everything she said, but we have no way of knowing his understanding of these options or his beliefs. I also know that many families/patients might have been given information, but not in full or did not hear it when they are in crisis.

    4. Heather DeRousse

      You make an excellent point. If Jose was able to talk a little more and given time to answer the questions, it would have helped to know where he was at and start there.

  4. Kathleen Hinkle

    I can relate to this scenario, because I have had adolescent and young adult survivor patients tell me that they did not receive information about possible infertility before their cancer treatment started. The first thing I always do is apologize for that. I think providing empathy and allowing the patient to express their feelings (whether it be sadness, grief, anger, etc.) is an important first step in the conversation. The social worker in this scenario does a good job of this.

    1. Ashley Flynn

      I, too, can relate. I currently work in pediatric oncology so I see multiple patients that will have their fertility compromised by treatment. However, I believe my passion for fertility preservation comes from my own experience. I was an AYA cancer patient, diagnosed with rectal cancer at age 24. My radiation oncologist and medical oncologist were on top of preserving my fertility. I opted for a oophoropexy. However, I was under the impression that after treatment this surgery could be reversed and i could have children naturally. When I went to my end of therapy appointment with this surgeon (by myself), I was devastated to find out that I was only able to have children through IVF.

      1. Kathleen Hinkle

        Wow, Ashley, your story is powerful. I’m sorry that happened to you (but am glad you’re a cancer survivor!). You make an excellent point. I think sometimes, the goal becomes the intervention to preserve fertility. I know that sometimes I’m guilty of this. We are under such a time constraint to intervene before therapy starts, we just want to get it done. It’s important to go over all aspects of FP with a patient and family; this includes use of the preserved sample after therapy. For most patients, I would think it wouldn’t change their decision to proceed with FP, but will be helpful down the road so they know what to expect. Just preserving sperm, oocytes, or tissue is only part of the process. Thanks for sharing your story.

        1. Carolyn Demsky

          Totally agree Kathleen

          1. Pam Black

            Ashley, I too am sorry about your experience but know that your experience brings a sensitivity to your work with AYA. These discussions can be so complicated and especially so under the distress of diagnosis and treatment planning. The social worker’s apology was crucial and important. I am glad that she could own the responsibility for the healthcare team in such a way that the patient’s upset was validated.

      2. Shanna Logan

        Sorry to hear about your experience Ashley. It highlights how important health literacy is, and to ensure the conversation goes two ways between a health care professional and a patient; not only in the provision of information but also creating a shared understanding of short and long term implications.

        1. Jill Fitzpatrick

          Agreed, health literacy is so important. As providers we are so use to using complex medical terms that we assume others understand and process. Making sure the dialogue is mutually understood is so very important and something that can get lost in the midst of a very busy day.

        2. Jamie Hillmer

          Ashley I am also sorry about your experience. As a provider, I sometimes feel pt’s are so overwhelmed with finding out about their diagnosis. Then its always a rollercoaster at first with extra labs, and scans, and further biopsies if needed. Then the possibility of surgery and starting treatment with chemo or radiation or both. We try and talk about fertility, but many patients at this stage are just so overwhelmed they just want to start treatment. We are at least 3 hrs away from our closest fertility clinic. The cost and time of travel is a real barrier for patients and then the timing of collection and the cost of it is another barrier. We have many patients that choose not to pursue this due to the barriers.

      3. Juliann Kiefer

        Ashley, Thank you for sharing your story. This brings up a good point that I thought about this week. When having fertility conversations with patients we are often having those discussions up front when they are receiving a giant influx of information at a very stressful time. It makes me wonder if fertility information is being misunderstood. I think the medical aspects of fertility and reproduction are often not understood by general public. It begs me to think that having an upfront discussion with patients/family about fertility preservation, that we know is time sensitive, but also providing them with written information to review after the appointment and maybe have a primary member of the team revisit the discussion briefly a short time later (in the next couple of days) to make sure they don’t have any questions/concerns after having a little time to process, especially before any procedures.

        1. Kathy Bugge

          Hi Ashley and Juliann:
          Thank you for your comments; agree. It is disappointing to learn that things were not understood as intended, and so true about having written (or even video?!), especially w/the idea of having someone from the team follow-up in a few days. So true…lots of important information being exchanged, in a short, anxiety-filled time. Thank you.

        2. Maggie Farias

          Hi Ashley and Juliann,
          I greatly appreciate your comments. I feel that with time constraints the team tends to focus more on starting the treatment and no spend longer time on explaining fertility preservation. Thank you for your great responses.

        3. Remie Mills

          I have been thinking how a talk of fertility preservation could be introduced to my patients. As the nurse educator, I meet with each chemotherapy naïve patient to discuss their treatment and how to manage side effects. I feel that integrating talk of the importance for theses patients at that time would be appropriate. I worry that it would be overwhelming for the patient, as there is a lot of information to review. I like that this video acknowledged the stress that the patient has been through. Our focus as care providers has been to save the patients life, but we need to slow down and think about their wishes past treatment.

      4. Vicky Wood

        Hi Ashley,
        Thank you for sharing.Im sorry for the miscommunication prior to your treatment.Your story will help me remember the importance of making sure my patients understand completely.
        I think many people have a hard time being the bearer of bad news and therefore don’t use explicit terms when communicating.Another bearier is patients and family can only process a limited amount of stressful info; often the oncologist believe treatment has to start immediately and they have discussed all important topics but the patient probably only heard 25% of the info. This is why I think using the Teach-Back method is such a good tool; we can evaluate what the patient/family understands and re-educate if neccessary. I also think it is important for the patient to chose a second person to be present for all education/ info being given about disease and treatment options.

        1. GriffinJ

          I echo every previous comment, but perhaps this also speaks to the need to reinforce this information throughout treatment. We don’t just tell patients about the importance of their oral chemotherapy of PJP prophylaxis just once; instead, we continually reinforce this concept. Ashley, do you think it would have helped to have the fertility conversation revisited at least once during your treatment when you were more settled into the “treatment routine” and could re-process all of the information.

          1. Maggie Farias

            Hi GriffinJ,
            I agree completely with your comment. I do feel the fertility conversation should be revisited once you have started treatment. Too much information is presented at the beginning and a person might not have time to process all of it.

    2. Janelle Donjon

      Kathleen – I agree with your comment. I think many times a medical team member may be addressing this issue after some form of treatment has started. Whether that is beacuse there were time constraints and things started quickly or the patient “did not hear” information that was provided. This quick video gave me a starting point on how such a conversation might start – apology and then overview information before diving in deeper or with additional patient support members present..

  5. Lacey Ballew

    Reading some of the comments above, I would have to agree with what others had to say. Acknowledging and addressing Jose’s feelings of not having the information upfront would help direct the rapport. Like Sarah mentions, we don’t hear much from Jose and it might be helpful to provide him that space to explore more of his feelings. Watching his body language he seems to go along with the conversation just by nodding. Maybe some open-ended questions would provide more patient interaction. The social worker does a great job reviewing options with Jose and also inviting his significant other to meetings as well.

    1. Marissa Fors

      Yes, he already felt excluded from the decision making, I would want to make sure he feels this is a safe space to express himself and take back some control of his treatment planning.

    2. Nicole Herrera

      Agreed. He appeared to go along for the sake of courtesy and being attentive. Allowing more space for him to process and ask questions as she presented this information would have been more conducive to building rapport.

    3. Melanie Baker

      I also appreciated that she invited his significant other into the conversation. This opened the door for future meetings and discussion around the topic of fertility and affirmed the value of his girlfriend in his life.

  6. Shannon Patterson

    As members of a medical team, we always need to be conscious not to work outside of our competency areas or roles (e.g., psychologists and social workers should be careful not to speak too much about the patient’s available options for fertility treatments, preservation or definite impact on fertility without first consulting w/ the patient’s oncologist/medical team). It seems important to me to discuss oncofertility within the context of an interprofessional team who has frequent contact with one another. The conversation above was a good example of fragmentation or lack of patient understanding of the treatment in which they are receiving. It makes me think about mental health/psychosocial assessments for transplant candidates and the importance of determining patients’ understanding of all of the possible risks of medical treatments they receive. Even though social workers and psychologists conducting these evaluations may not have all of the answers regarding fertility, drawing attention to this topic in pre-surgical evaluations would at least allow the patient to formulate questions for their medical team before receiving the treatment.

  7. Cory Elmore

    It’s important that the HCW addressed the possibility that natural conception (at the appropriate post-treatment interval) is still possible.

    1. Jean Melby

      I agree and have pledged to do better at this myself. Everyone must understand that taking time to bank a few samples prior to treatment gives them a chance at conception. They are also done a disservice if expectations for a future pregnancy are too overly optimistic. This too could result in frustration and disappointment in the years to come as well.

  8. Cory Elmore

    Lacey,

    Your observation of his body language is spot-on, I feel. Pt seems to be overwhelmed and did not express much emotion or offer much personal input to what was going on in his life and his emotions about his situation.

    1. Sara Soares

      Jose does seem overwhelmed in the video, it seems as if he hasn’t had time to grasp the information that he has been given…This young person is being asked to consider future decisions regarding his fertility, ones that he has probably not thought much about until he was given the diagnoses with the Big C word. He needs to ask himself what his heart desires, a hard concept for many of us without the looming cancer diagnosis. His behavior indicates that he does not understand the magnitude of the conversation…just shaking his head yes is a way to please the SW. A more open question discussion would help to further evaluate his level of understanding and determine what his educational needs are in this situation.

    2. Annie Lopez

      I also agree with everyone, this topic needs to be addressed right at diagnosis, but when so much is being communicated to the patient is this the time to discuss? Also I agree with providing written information – does anyone have suggestions as to where to find detailed, informative information?

  9. Marissa Fors

    Since Jose makes a point to express that he is upset, I would like to take a moment to explore his feelings of the lack of inclusion and explanation prior to the discussion. He is concerned about himself, but he also mentions his girlfriend and how it will impact her. I would like to provide him the space to open up about how he believes this has impacted both of them without making assumptions. I would like to create an open and safe space for Jose so that he feels he can contribute to the session in a way that is meaningful to him. Understanding his goals first and what he would like to accomplish can be a great way to shape the rest of the treatment plan.

    1. Michelle Bronzo

      I definitely agree with the comments above, but in particular what Marissa has raised about leaving space for processing. The SWer launches into a discussion about fertility options– and does a great job of navigating his disappointment in the medical system and providing him with important information about the realities of his fertility limitations/ possibilities for the future– however, does not take the time to really discovery what Jose is asking of her or wanting for a family. What are some of his personal beliefs? Are there certain treatment possibilities that he absolutely would not consider? Would he be against donor sperm? How would he feel ethically about IVF and PGS testing or storing/ disposing of embryos? And what are his concerns about sperm function as it stands now? Psychological impact of this? The SWer did very well but would like to hear more from Jose!

      1. Kathleen Hinkle

        Excellent points, Michelle. Taking into account the patient’s personal (and perhaps religious and cultural) beliefs is a crucial component in the discussion. The social worker does a good job of covering some of the options for family planning; however, if the patient is not ready to hear the information, or is opposed to some of the options because of personal beliefs, the conversation is no longer productive. Taking the time to hear from Jose would definitely have been helpful!

        1. Alexandra Huffman

          I appreciate the education and attempts to normalize provided by the social worker. I completely agree that the patient gave her important information about his feelings and concern for his girlfriend/relationship, and I think it’s important to respond and explore. Even though rapport may not be there early on in an appointment, starting where the patient is will build the working relationship. Also, inviting his girlfriend for a future visit is a way to validate their relationship and the impact fertility issues have on each individual and the couple.

          1. Stacy Geisert

            I agree with the importance of exploring both Jose’s emotions regarding the lack of information he was provided prior to starting cancer treatment as well as his new emotions regarding his options for family building. I think it is imperative to see what his personal beliefs and values are regarding family building and which options would be most suitable to him. I think one way this could be approached is by asking Jose an open-ended question such as “What do you currently know about your options for family building and which of these options would you be most interested in?” Then, you can expand on his desired options and address the other options to make sure that he fully and correctly understands all options that are available to him. These explanations could be presented by social work or other disciplines if more expertise is required.

    2. Kelley Johnson

      I agree Marissa, I don’t think the social worker allowed Jose to express his feelings on the topic and jumped right into what she thought he might want to hear. I wish she had talked less and listened more.

  10. Anne

    I also feel it is important to acknowledge his frustration at the lack of education around fertility preservation prior to treatment and work together to move forward addressing his concerns and needs. I agree with Stacey, that a good starting point moving forward would be a discussion about semen analysis to help understand how feasible it will be for him to have biological children. With this in mind, the social worker might want to mention that she will circle back to the health care team to help facilitate this.

    1. Maggie Farias

      I totally agree with you. I would also communicate with the team in referring him and his girlfriend to the reproductive specialist.

  11. Fred Wilkinson

    I agree with everything listed above, but also had some additional thoughts. Besides offering to meet with the patient and his girlfriend, I would have also helped the patient with a list of potential questions for his medical provider. This could include finding out which therapies he received that may have impacted his fertility, timing of getting his fertility tested post treatment and what the clinic/center is doing now so that other AYA patients better understand their fertility risks.

    1. Juliann Kiefer

      I think this is an excellent idea. Helping the patient explore his questions to have a well thought out conversation with his medical provider is a great idea. Helping him to organize his questions and receive the necessary information will help him to make an educated decision on his fertility options and future planning.

    2. Jessica Cook

      I too agree with everything listed above. I think that Fred’s suggestion in helping the patient with a list of potential questions for his provider is truly an excellent idea. I think that it not only allows the patient to organize his questions in a practical way, but empowers him as well.

    3. Bishop Chris

      I could not agree more. I work in a very large fertility practice and the oncofertility patients we see would benefit from having a list of questions to ask. Having a resource such as a social worker should not be taken for granted. Many times the patients we see have not seen a social worker and are either self referred or referred by an oncologist without any guidance as to what to expect. The social/psychological support, that is needed so desperately, is still a missing link for far to many oncofertility patients.

      1. Erin Donnelly

        Bishop Chris, I totally agree with you. I, too, work in an IVF center where our Oncofertility pts are referred by their oncologist & come totally unprepared /w/out guidance.
        I 100% agree with you that the psychosocial support for the Oncofertility population is desperately lacking!

    4. Maggie Farias

      So true. We get so caught up in what we need to do that we dont help the patient gather his thoughts and get is questions answered.

  12. Elizabeth Weisbrich

    Discussions surrounding fertility can be difficult however this scenario probably occurs more often than it should and poses additional challenges when the patient has already undergone treatment. I appreciated the social worker in the video apologizing to the patient that fertility options were not discussed prior to his treatment. I would’ve also validated his feelings as he mentioned he is upset, which is understandable. As the social worker mentioned, it may be a common occurrence however I might’ve included steps our organization is taking to ensure that communication involving fertility is done prior to treatment. I appreciated that she offered another session with the patient and offered to include his significant other. I feel this is important but before I launched into the various techniques, I would’ve asked the patient if he had any specific questions before we get started. It seems like he may need a little time to process the information and the implications that treatment may have had on his fertility. Allowing a safe environment for the patient and sometimes just holding space is as important as the verbal communication.

    1. Christina Wilson

      I agree Elizabeth. I think you pointed out some valid aspects of the conversation and things that could have been added. I completely agree in validating his feelings and allowing him to discuss questions he may have. I even suggested that starting with asking him what he may know, or has heard about fertility after cancer, could provide a foundation to help meet him where he is at.

  13. Nicole Herrera

    Everyone on this thread shares my sentiments, especially the response noting that the social worker should have acknowledged his own feelings as well. The apology was appropriate and called for, but it would’ve opened up an important conversation about the patient’s well-being and emotional state. Maybe that would be for next time, but an initial check-in would have been good. Next steps would be semen analysis, as Stacy stated, and answering any and all questions that this issue has raised for Jose.

    1. Lacey Ballew

      I would be interested to see a video version on how to navigate the conversation addressing Jose’s frustration. Since it seems common that infertility is not addressed prior to treatment, it would be nice to have those tools available suggesting how the social worker should proceed from there.

      1. Renee Martinez-Epperson

        I’d be interested in seeing a couples video:
        The therapist discusses 12% of the population having difficulty with infertility, what questions would come from this information. Would a referral need to be placed? Who would the referral come from? Can this clinician help when the person in recovery is not the person with the fertility issue?

        1. Lacey Ballew

          I just reviewed the case study and there are great tools for approach. And yes Renee, a couple video would be great!

      2. Jennifer Bojanowski

        I agree, Lacey – a video showing the SW allowing Jose to respond and elaborate on his feelings about not being given information/options before treatment, this could potentially demonstrate a range of responses and interventions on the part of the SWer to navigate a patient’s frustration. Creating engagement with the patient can be challenging when a patient either isn’t given the opportunity to express disappointment and have it acknowledged, or when he/she isn’t able to move beyond such feelings to the next step. It was nice to see this SWer not join with the patient in his frustration, place blame, and potentially undermine his relationship with other team members who may have let pre-treatment information fall through the crack.

  14. Hayley Shaw

    I agree that this discussion was important in building a trusting relationship with the patient. I think the social worker did a great job of facing a difficult issue, especially as she acknowledges that this patient’s fertility options were unfortunately not discussed prior to treatment, which I think we all agree happens far too often. I also agree with others’ comments, that at this point it would have been helpful to encourage the patient to expand on his feelings, his questions or concerns , and his goals for fertility prior to presenting the options. Knowing where your patient stands would help direct the conversation and also give you insight into his feelings on the topic. Since he mentions his girlfriend I think it was wonderful that the social worker offers to include her in future discussions and also offers to provide potential dialogues to have with a significant other surrounding post-treatment fertility. Overall, I think this was a positive interaction, but would have been nice to see more input from the patient.

  15. Melanie Baker

    I appreciated that the social worker didn’t assume that the patient had received information about fertility and broached the subject tentatively. I think this created more space for discussion and allowed the patient to more readily acknowledge his disappointment.

    1. Rebecca DiPatri

      I agree, Melanie. As participants in ECHO, I think we recognize that these discussions are not consistently taking place prior to treatment, but are hopeful to change these statistics moving forward. I think by not assuming, and asking, she has created a safe, open space for deeper discussions.

  16. Helen Tackitt

    It is nice that the SW apologized that no one spoke to him but I would not have said that it is common that no one spoke to him. This statement can make the patient upset and leave the patient wondering why the facility is not implementing processes to make this part of treatment better. I also would not recommend saying things like the “old fashioned way.” He is old enough to use proper terminology.

  17. Michelle Fritsch

    I appreciated that the social worker apologized for the lack of information provided prior to treatment regarding fertility. One thing I might suggest is that the social worker ask what his understanding is regarding fertility preservation and options. She went into a speech about fertility and options when he may have been questioning something completely different (cultural beliefs, understanding of ART, future plans etc). I also think that using terms like “old fashion” way are a bit condescending. Using proper medical terminology and defining it if need be is important.

    1. Leah Clark

      I agree that prior to diving into the options, exploring what his questions are first is important.

    2. Shanna Logan

      agreed

  18. Vicky Wood

    Apologizing to and validating Jose’s feelings were important to first steps. I do believe the social worker should have asked open-ended questions to facilitate Jose to express his feelings and wants for the future.

  19. Wendy Gwinner

    I thought she did a good job leading the discussion and validating his concern. I would likely dive a little deeper into his feelings. I think I would also ask what his thoughts and his partner’s thoughts are on the topic.

  20. Ashley Flynn

    First, I think it is important that patient know that fertility will be discussed in this appointment/meeting. Often times, it is difficult to digest new information during an appointment and bringing a family member or a friend to the appointment can be helpful to ask questions and also write down important points of the discussion.
    A couple things that I would do differently is first ask what he knows or understands about the effects of his treatment on his fertility and also what he knows about how to build his family in the future. I would use this to guide the discussion. He may know more or less than you think. It would be important to use terms appropriately (ie..do not say “the old fashion way) and also explain procedures and terms thoroughly.
    Finally, it is important to say that families can be made in many different ways and that you will work together as a team to find the best way for him and his future family.

    1. Shanna Logan

      agree with all of this!

    2. Alisa Barber

      Ashley, I agree with everything you said!

    3. Carolyn Demsky

      completely agree!

  21. Leah Clark

    After exploring his concerns about the effect his cancer treatment had on his fertility and his disappointment that he has with his health care team for not addressing this prior to therapy, I would dive into the options he had but provide literature of him to review and read to guide the discussion. Also, it would be important prior to starting to talk about the options to ask him if he has a friend or family member, significant other or partner that he would like present for the discussion.

    1. Anastasia Brown

      This is a really good point. We know patients are often overwhelmed at time of diagnosis by the amount of information coming in but it’s important to remember that this can also occur throughout and after treatment as new information is discussed. Reviewing the information and having handouts as others have discussed is a great idea but oftentimes having someone else present at the visit to take notes so the patient can focus on being involved in the discussion without the pressure of trying to remember everything is a crucial piece of the communication puzzle as well.

  22. Shanna Logan

    The social worker did a nice job of empathizing, normalising infertility and providing information and options to the patient, in a short video excerpt, similar to what others have said. However, I think it’s also so important to ask the patient what their understanding of fertility is, their hope for family building in the future, how important this is, what their greatest worries might be if that was disrupted (e.g. further explore what worries him about how to communicate this uncertainty to his girlfriend), how open he felt to using different means to have a child (considering cultural and religious values) outside of natural conception. I might ask the initial question slightly differently, and ask if a patient “recalls a fertility discussion” as often around the time of diagnosis patients may not remember all discussions, or perhaps this was very brief. For AYA survivors this conversation may have occurred with parents and not communicated to the patient directly. I liked that the social worker invited the patient’s girlfriend to attend for future counselling. It would also be important to offer this patient a semen analysis to clarify the uncertainty around his reproductive potential, as others have noted.

  23. Juliann Kiefer

    I agree with what others have said. I think the social worker did a good job of validating his feelings. I think asking open ended questions to assess his beliefs and concerns about his fertility options and family building options would have been a good place to start. I feel she could have asked more questions about his concerns and what questions he had so that he could have an educated discussion with his medical provider.

    1. Karen Johnston-Jackson

      I agree with what the others have said in regards to the social worker doing a good job validating the patients feelings in regards to not having received information on the patient’s cancer treatment effecting his fertility. I didn’t like the fact that the social worker did not let the patient express what goals the patient was looking at accomplishing. Like was he even trying to have a baby right now?

  24. Drema Byrd

    I agree with the importance of approaching this subject early and education of all healthcare professionals to ensure the patients are well informed early in their diagnosis.

  25. Stephanie Fortt

    This subject is important and it seems that many are uncomfortable with having the discussion. I think it is important that those having the discussion with the patient feel comfortable with the subject matter and knowledgable, of course if they don’t know the answer then to state that it attempt to get the answer. The social worker in the video appear uncomfortable/unsure at varous points.

    1. Lisa Cummings

      I agree that she did appear uncomfortable at times. She appeared rushed and her expressions like “having a baby the old fashioned way” were not appropriate. Slowing down, asking open ended questions to understand what the patient is feeling and being comfortable using correct terminology and immediately following it with layman’s terms when needed are important. She needed to not only be comfortable with the material, but to read the patient and his reaction. There are times during education and counseling, you are not having the impact you desire and you can tell from the body language of the patient. At that point, it is time to step back and regroup and get more information from the patient.

      1. Linda Rivard

        Agree – I work if pediatric oncology (survivorship) and I discuss fertility at our patient’s first survivorship visit. I discuss possible risks and STRESS despite any odds – you are fertile until proven otheriwse. Experience has taught me that many survivors think they have a free pass not to use protection.This also opens a door to use protection not only to prevent pregnancy but also prevent STD’s. There is not a one size fits all – but this seemed like information overload and somewhat informal. I believe each institution will be different – but this topic is not a one and done – that is why a relationship with a navigator from day one of diagnosis may be most effective.

        1. Iam Scott

          Definitely information overload for a first conversation, I agree. From a psychosocial perspective, I feel this entire discussion could focus on the feelings stemming from not being told about the potential loss of fertility. Options could be brought into the conversation, but as you say it’s not a “one and done” and jumping straight into the options may make the patient feel unsafe delving into deeper emotional content.

  26. Berenibara vivian

    I want to believe that the client met with the doctor for review of SFA (seminal fluid analysis) before meeting with the social worker. And it’s important to also inform the client that such is not peculiar to him and there is hope.
    It is good to get the client well informed on fertility preservation irrespective of the situation. Although it is not an easy pill to swallow but it will reassure the client to an extent.

  27. Cheryl Smith

    I appreciate how she normalized and validated his feelings regarding not being informed of options prior, or at the time of treatment. She also did a good job of normalizing that fertility issues are common within the general population. She provided good support, hope, and offered further follow for him and his girlfriend.

    I appreciated that that she did not rule out the option of having children naturally and giving him some hope that that may occur. She provided a general overview of options and resources for family building. I personally, and professionally, struggle with fertility options and adoption, knowing that most of these treatment are cost prohibitive for patients and families; although I understand there are some grants. Also, there are Adoption agencies who will not adopt to cancer survivors and the cost of adoption is a factor; therefore it leads to those can afford have the options and those can not do not. The socioeconomic impact of disease and family building is one that has no easy button and can be quite difficult and distressing to navigate.

    1. Jodie Jespersen

      I agree – I think it was great that she did discuss how he may be able to conceive naturally offering a space for hope!

    2. Tomoko Tsukamoto

      Yes, I agree that SW didn’t rule out the hope of having children naturally, and recommended the sperm analysis. I also appreciate Cheryl’s comment about cost prohibitive for fertility preservation and family building. Our young cancer survivors are often facing many financial burden of cancer as well as uncertainty of their future. Our team is working to voice the needs for insurance coverage for fertility preservation and family building.

    3. Lisa Cummings

      Cheryl,you brought up a very good point. Everyone always falls back on the “Well there is always adoption” but I have had friends look into it and it is very expensive. I know one couple that put up $20,000 for a child and their money was taken and they did not get a child. I also never thought about the fact that some adoptive agencies will not adopt a child out to a family with someone who has a history of cancer.

    4. Jennifer Bojanowski

      Cheryl (and others who have replied), I really appreciate how you’ve brought up the socioeconomic factors with most all of the options beyond natural conception. Knowing a patient and his/her family’s socioeconomic status may give a hint at whether most of the “options” are truly options. On the flip side, when working with young adults with thalassemia, I have seen couples with little to no resources pool all that they had and go about creative fundraising to access ART. We can’t ever make assumptions about an individuals priorities or values, in any direction – which just goes to reinforce the idea of informing _everyone_ of available options, costs, local access, support resources, etc. We can take our lead from what patients share in terms of how much detail to go into about various options or resources, known or possible future barriers.

      Related but a bit tangential, I wonder how often providers speak of foster care as another way to create family, should a patient have resistant financial, social, or religious barriers to any of the more typical ART/adoption options. Out here in Hawaii, it’s very common for families to hanai the children of other family members or close friends (an informal type of fostering or adoption that sometimes does, sometimes does not, involve legal guardianship or eventual legal adoption).

  28. Jodie Jespersen

    I think this was a great start-up conversation to more fertility education and family planning guidance. I appreciated her inquiring what this young man was informed of or already knew in relation to fertility and how his fertility may have been compromised by his cancer treatment. I think it is a great way to open up the conversation, get the patient talking, and understand what you are working with and where you can start with your dialogue. I may have asked more specific questions about what he understood now about the risks to his fertility in follow-up to hearing that he didn’t recall anyone having the conversation with him prior to treatment. For example “what is your understanding of how cancer treatment may have impacted your fertility”. I felt it was great to express that she was sorry this information was not given prior to treatment, though like many have stated it may be that the patient doesn’t recall because of his limited ability to take in the information overload that happens at initial consult. Overall, I think her approach to the conversation was great – Inquiring into patient perspective or understanding, empathizing/acknowledging patients frustration or concern, providing information, and working with patient to develop an appropriate follow-up.

    1. Sara Zargham

      I completely agree with this statement. I feel as though this is an entry discussion that yes, should’ve happened much sooner, but at least the SW is taking steps forward to addressing this patient’s fertility issue and concerns. I also agree that the SW should have gone into more specific details and asked more age appropriate and situation appropriate questions. Whilst she started this hard and heavy conversation, she nor the patient really gained any further understanding or information. The SW did a great job being open and honest about his options and possible issues that could arise with his fertility related to his oncology treatment plan, though I wish she had asked more about the patients feelings, his family goals in the future, and what he wants to accomplish without assuming anything to start off with. We as healthcare professionals sometimes DO assume, and this seems to be what happened in the initial conversation the patient did or did not have with an initial provider, so steering clear of assuming the patients wants or wishes before expressed would make for the most clear and open discussion.

  29. Kelley Johnson

    I would like to hear more from the survivor about what their feelings were towards the loss of fertility, what their family planning goals are, and if they would like to discuss this topic with their significant other. I think the social worker made assumptions about the survivor based on his response that he was upset in hearing about his potential loss of fertility but didn’t explore what that meant to him.

  30. Thresa Jean Mayr

    Validating Jose’s disappointment about not having a discussion on fertility prior to his cancer treatment is an important part of the SWer’s discussion. Great start. I too see so many patients that never had fertility discussion prior to treatment, which is something we are actively looking to change in our program.
    Before going into potential fertility options, I feel it would be important for the SWer to inquire about the patient’s level of understanding of his treatment relating to the level of risk of impact on fertility. The SWer could have inquired about specific family building goals he hoped for. If the goal of the meeting was to discuss fertility options, she introduced many scenarios. I feel for someone who verbalized disappointment in not having a discussion on fertility, the SWer should have asked appropriate questions allowing the patient to discuss his feelings, his hopes and/or his significant other’s mutual family goals.

  31. ChrisostimB

    As more and more younger women are getting cancers that were previously more common among the 60 year old and above and as the age at first pregnancy gets more and more advanced, there is every reason for all the health care workers to discuss the treatment and fertility options of young patients diagnosed with cancer. My thoughts would be that this should a collective responsibility across the management cascade from the initial encounter with the nurse, doctor, social worker and any one else that encounters the patient. This should also be incorporated in the tumor board meetings, where more often than not, fertility issues are never mentioned for these patients.

  32. Leigh Hart

    To be in this scenerio that was provided where fertility was not discussed upfront must be extremely frustrating to the patient and SW. The social worker laid out nicely the options that should be focused on moving forward.
    The information was a lot at once. Possibly knowing the patients baseline understanding of his therapy on fertility could of guided the conversation to meet his specific concerns.

    1. Bishop Chris

      I could not agree more. I work in a very large fertility practice and the oncofertility patients we see would benefit from having a list of questions to ask. Having a resource such as a social worker should not be taken for granted. Many times the patients we see have not seen a social worker and are either self referred or referred by an oncologist without any guidance as to what to expect. The social/psychological support, that is needed so desperately, is still a missing link for far to many oncofertility patients.

      1. Kathleen Hinkle

        I like that idea, Bishop. At my hospital, we have a handout that we give families regarding the potential impact of cancer treatment on fertility (we have one for females and one for males). We’re also about to release a video showing interviews with real patients explaining why they chose to undergo sperm banking prior to treatment (we will create one for females next). But having a list of “FAQ’s” with potential questions to ask is a great idea! Oftentimes, patients and families are so overwhelmed with information that they don’t even know what questions to ask.

        1. Sara Soares

          Couldn’t agree more…so much information to process….and no time to grasp the importance of decisions that are for a lifetime.

  33. Lisa Cummings

    I thought that it was good that she addressed the patient’s frustration regarding the fact that he did not receive any information prior to treatment. I was glad that she acknowledged that it could be for a variety of reasons and she did not blame a specific person or department. It might be reassuring to the patient to know that the issue has been identified and the institution is in the process of rectifying the problem so that this situation is less likely to occur in the future

    I did not hear the interviewer asking the patient about his thoughts and understanding regarding fertility. It would be nice to know what he already knows and how he feels about what he already knows and then to build upon that knowledge.

    It is also nice to have written information and refer to that at the same time as you are speaking to an individual as many people are visual learners.

    1. Kristin Frazier

      I agree that it would be nice to hear more directly from Jose about what his thoughts and feelings are regarding everything and what he understands his options to be.

  34. Stacy Sanford

    There has already been such great discussion of this topic. I agree with most and very little to add at this time.

    1. Kathy Bugge

      Hi Stacy and All: I agree, and agree with most of the comments.
      I realize this is a short clip, and wish there were more opportunity for Jose to share HIS thoughts. Also, not knowing where this SW is employed, it can behoove the discussion to have all on the healthcare team ‘in’ on the plan, to further share the message.

  35. Susan Stephens

    I agree with the comments above about acknowledging Jose’s concern about lack of information about fertility preservation prior to treatment and the recommended interventions. He mentioned his relationship with his girlfriend and the social worker did mention including his girlfriend in future meetings so this indicates this is just the beginning if the conversation, but in this meeting I think I would have asked him to elaborate on his concerns about fertility and his relationship with her There may be immediate needs or stressors that could be addressed.

  36. Courtney King

    As this discussion begins, it is not stated that Jose’s fertility status is actually known. In the beginning of this discussion, the SW validated and apologized for Jose’s not having discussed, or not remembering the discussion on fertility. I think the next step prior to offering alternate options for “making a baby” would have been to discuss the option of sperm analysis to determine Jose’s current fertility status. Once this was known, then alternate options would come into play. One question that comes to mind is, how old was Jose at the time of diagnosis? Fertility discussions are often short conversations at the time of diagnosis. It has been documented in several charts in our institution that a parent(s) did not want to discuss this topic with their teen. I agree that fertility needs to be a series of conversation that build on each other.

  37. Bishop Chris

    The SW seemed to be unloading a lot of information in a very short time frame. I would be very concerned about the young many ability to process and understand the huge volume information he was given. I did not here a lot of therapeutic pauses to give him time to formulate questions.

    1. Ellen Henning

      I missed this post initially, but I completely agree. There are other comments regarding how much information dumping tends to happen and I would be concerned about full understanding without pausing for questions and his thoughts.

  38. Beth Corcoran

    I thought the SW did a nice job and realize this is a snippet of a much longer conversation. Similar to what others have stated, as a mental health provider, I would also want to explore the motivation of bringing up the idea of fertility at this time and if this was something he was considering with his significant other. As the SW stated, there are several options, and understanding his support network and goals are very important.

  39. Rebecca DiPatri

    I like how the SW not only assessed whether fertility was discussed prior to treatment and provided him an opportunity to share his experience. The SW was able to explain and outline to client how she can assist him assessing his fertility status and also share her knowledge on the topic of potential for family building options.

  40. Rose Miller

    I liked the way she opened the conversation on a positive/relaxed note easing patient into the conversation. I feel she appropriately apologized but also didn’t apply blame to any party. At first I thought she may have jumped too quickly into possible options. After thinking about it some more, I feel this may be helpful as many patients may not know where to start. This may help direct them or develop questions. Overall I thought she did a great job.

  41. Danielle Rogers

    This video was quite eye opening for me. It is sad to realize that there are patients who are experiencing disappointment b/c important conversations are being omitted or decisions made without the patient’s co-collaboration. I am sure most providers are not intentionally avoiding the conversation and probably feel obligated to some degree to “hurry things along” in order to get the patient to treatment timely. However, this video helped me especially realize the gentle approach patients need to help make decisions that not only impact them at treatment but also in survivorship. I also appreciated the social worker acknowledging the patient’s frustration but also how she presented him the hope of options. It was a delicate balance of allowing the patient the right to be frustrated but also to offer a redemptive approach by providing different options for family planning. I enjoyed reading everyone’s post.

  42. Joan Coleman

    I agree with all of the above comments, especially how disheartening it must be to patients finding out that they were uninformed about fertility options prior to their treatment, when in fact, in may be too late for FP. As much as the SW tries to apologize, it is important for the patient to regain a sense of trust in medical personnel. Totally agree with all other comments mentioned!

    1. Robin Dorman

      Agreed with this and many related comments above. If this was going to be an ongoing therapeutic space, there would likely need to be a lot more processing about what it means to have potentially missed out on the fertility preserving process and feelings towards providers. Patients so often feel that their oncologists and other providers saved their lives. It must feel very conflictual to also have feelings of anger or disappointment towards the same providers.

  43. VichinsartvichaiP

    In Asian culture esp in Thailand, sex is not a usual stuff we discuss with patient and their knowledge about reproduction is limited. Most of those patients are infertile after treatment regrettably. The discussion represents here is very simple and telling the scope of what will be covered during the discussion which IU think really good.

  44. Robin Dorman

    Although this is not a comment on the video above, (hoping this is not out of line!) I wanted to comment on an issue addressed in the lecture for this week as I thought it was a very important and interesting concept. The lecture discussed the issue of masturbation as it relates to banking sperm and not only the religious and cultural beliefs around masturbation, but also parents’ discomfort with discussing this with adolescent and young adult males. These strike me as very different barriers to the conversation both of which would be interesting to hear more about.

  45. Amanda Chassee

    I appreciate the social worker’s aim for establishing rapport by apologizing and for opening up further discussion with the girlfriend. I also like how she was able to offer hopeful situations for family building even without the knowledge of his current fertility status. She appears invested in further discussions with Jose about all of his options. She normalized the process and the general population’s fertility challenges well.

  46. Kate Eshleman

    Overall, this conversation appeared to go well. I echo many of the comments above regarding asking more questions. While acknowledging the sake of acting and keeping the video clip brief, I would be interested to hear more about Jose’s specific thoughts and concerns. She mentioned the possibility of his girlfriend joining a session in the future, and I would assess if Jose is interested in his girlfriend joining, and/ or if he would like to involve anyone else in the conversation (i.e., other members of the medical team, family members, close friends). In my experience in pediatrics, parents (and/or patients) often like to have additional sets of ears present to ensure all of the information is captured between them. I agree with above comments regarding assessing Jose’s understanding of the information, and providing printed information, as well.

  47. Kristin Frazier

    I really like how the SW acknowledged that fertility preservation was not discussed with him prior to starting therapy and apologized for that. I thought it was really important that she shared options that are available to him now and the fact that at this point they don’t yet know what his fertility status is. I liked how she normalized infertility issues in the general population but sharing that 12% of folks struggle with this in general and not because of cancer therapy. I’d be interested in hearing more from Jose about his goals for parenthood.

    1. Devon Ciampa

      I had the same thought Kristin…it would be interesting to see more of the conversation in terms of his goals and how he reacted to the options she brought up.

  48. Devon Ciampa

    I thought it was very interesting that she addressed that he or his girlfriend might have had fertility issues anyway (by stating that 12% of the pop. has fertility struggles.) I had not heard that fact brought out in fertility conversations in my job at the hospital before. Also, I like how she validated the unfortunate situation he is in due to no one discussing fertility before his treatment but offered options and possibilities.

  49. Amber Lamoreaux

    The social worker did the right thing by addressing and apologizing to the patient for the lack of information before treatment began. This is definitely a conversation that needs to take place before treatment starts whenever possible. Since the social worker did not automatically defend the lack of information or dismiss the patient’s concerns it could possibly help the patient feel more comfortable speaking with her and expressing his worries.

  50. Christina Wilson

    Overall, I found this clip interesting. I thought it was appropriate for her to apologize to the patient that he had not had previous discussions with healthcare providers regarding his fertility and cancer treatment. I also appreciated her willingness to discuss this with him again as well as him and his partner. A few things that I may have done differently, is first, open it up to him, and have him tell me what he does know regarding fertility after cancer. This would provide a starting place and allow me to help meet him where he is. Another thing I would do differently is I believe her tone was a little too happy, in this situation, I would prefer to tone match the patient in this situation. Mirroring his tone, can allow him to know that I value and care about this conversation and his feelings and opinions.

    1. Ellen Henning

      I agree about the tone not always matching the patient/situation. I would be worried that the information would be misconstrued.

  51. Loraine LLanes

    Agreed with comments above. I think this is an enlightening way of learning about how to do our work as health providers in such sensitive topic as sexual and reproductive health of adolescents and young adults living with cancer or cancer survivors.
    In terms of my opinion about the social worker performance, I think I would first explore the feelings of the patient about not being informed of the risks of infertility or fertility preservations options. This is very important because it allows the patient to express his emotions (anger, frustrations, sadness), and at the same time it is a way to know better his beliefs, ideas and meanings about his experiences with cancer and its treatment. Besides, this type of action usually give us a space, as health providers, to share some basic information and specially, to create the necessary rapport for the present and future work with de patient.

  52. Loraine LLanes

    It is interesting that the patient said he was “upset”, not only for the personal consequences of not being informed about the risk of infertility derived from the cancer’ treatments, but also because this consequences involve other significant people, in this case he mentioned his partner. More specific, I consider very important to deeply explore the existence of guilty feelings: even when the patient did not received the required information from the health services, he could feel that he is responsible of his possible reproductive difficulties because he did not look for information about it. Guilty feelings can be very upsetting and limiting, they can favor a wide brunch of negative emotions, with deleterious effects on affective, social and even on the health state.

  53. Loraine LLanes

    Nevertheless, I agreed that it was very good that the social worker apologized for the absence of information about fertility during the health care assistance of the patient, but it is necessary to recognize that this is an issue that is urgent to solve in the health care services. This probably enhanced the attitude of the patient in terms of being more open-minded regarding the shared information, and probably encouraged his adherence to treatment too. Besides, I think it was crucial that the social worker included and invited the patient’s partner to share information with her, all together. I think that one of the most important and respectful approach in the context of fertility and reproductive matters is to sustain a couple perspective.

    1. Jennifer StClair

      While i have heard many survivors voice he/she was not offered reproductive health counseling before treatment, I agree this is an all too common issue and part of the reason I am taking this course. If nothing else, I hope to make sure all the newly diagnosed patients with whom I come in contact are prompted to think about the impact of fertility on future reproductive health.

  54. Jennifer Bojanowski

    I agree with many of the highlights offered by others:

    *The SWers acknowledgement of the absence of information prior to treatment goes a long way toward validating Jose’s expressed disappointment and building rapport
    *Offering a visit with his girlfriend let’s Jose know this won’t be the only time the topic will be discussed and that the SWer wants to provide support around the impact of this prior omission of information on Jose’s relationship

    Since it seems this is the start of an ongoing conversation and relationship with the SWer, it would be very appropriate for most of this session to be about Jose sharing his feelings, thoughts, questions, experiences. Perhaps the SWer moves into this after the tape stops rolling.

    I felt the amount of introductory information she provided on possible options and scenarios was an appropriate amount (and also agree that using “the old fashioned” way instead of “natural conception through intercourse” or similar potentially comes across as her discomfort with the topic, rather than creating a more open, direct space for Jose to communicate).

    Since much of our reading had to do with the influence of cultural and religious beliefs, in addition to the various standard and experimental fertility preserving options, I would have loved to hear more open ended questions/comments to allow Jose to comment on aspects such as these, as well as simply where he is at with thinking about children.

    Overall, I like seeing how one provider would broach this conversation at this time, following the patient’s treatment. It brings the information we’re learning about in lectures and readings to the person-to-person level.

  55. Ellen Henning

    As many others have said, I really appreciate how difficult this conversation can be. I especially liked how the social worker apologized early on – it can go a long way. In addition, they did not stay in the zone of “it’s terrible that you didn’t get to have that conversation earlier.” The social worker did a good job of acknowledging the past while staying in the present in more of a problem solving and “what can we do now?” approach. I have been in many situations in which people get stuck on something that cannot be altered in the past.

    If I were to do anything differently, I would likely assess his understanding of options before providing the information. In addition, I would pause for questions – in a short period of time, there was a lot of discussion about options.

    I think offering to have a session with the significant other is a great plan, as well. I recently had a patient request to have a session with a significant other as they were unsure how to go about the discussion (the significant other was aware of the past history of cancer, but not how it could impact fertility). We ended up role playing potential options for discussion as I was hoping to empower the individual and will be meeting all together during a future session.

  56. Jennifer StClair

    I was glad to observe this conversation and thought it was great for the SW to point out that 12% of the population has difficulty with fertility regardless of having experienced no cancer. I agree with so many other commenters that the social worker’s apology for the patient not receiving this information before his cancer treatment was important for the patient to hear.

  57. Anastasia Brown

    I thought the SW did a great job of apologizing for the lack of upfront information and then transitioning the discussion to current knowledge and needs but I think it would have been helpful if the team had ordered analysis of his current reproductive potential prior to the visit or if how to schedule this was discussed as a part of the visit. The SW did a great job normalizing the possibility of infertility but without knowing the full picture it’s difficult to know the value the conversation on fertility options will hold for Jose. I think this conversation was overwhelming for him and having information on his current status would have made the discussion much more meaningful.

  58. Derwin Gray

    I was impressed by this social worker’s ability to lay out all options in a simple way without jargon. Apologizing for the lack of discussion before undergoing treatment was also a nice touch that will probably help with the discussion moving forward.

  59. Brenda Allen

    Beginning with an apology was helpful. The SW did a good job as many have stated. I do feel this appears to be a time to provide information to the young man and not a time to find out what he knows. There wasn’t an opportunity to elicit responses from him about his knowledge level in many areas. Someone commented that written information would have been a good thing to review together. Having something to reflect on and to share with his girlfriend would have been beneficial.

  60. Karen Long

    This senario highlights how complicated sexual health and preservation can be. When faced with a situation where an individual didn’t get (or doesn’t remember) information about reproduction, there is a balance between providing information and helping the individual cope with the possibility of infertility. While this was only a brief clip, I think a deeper understanding of the impact on the individual is important before providing the facts

  61. Connor Moltzan

    Overall I think the social worker did a great job, and both in this video and module 6 think she’s a great person for me to model these conversations after as as a grad student in oncology social work. I know in real life this conversation would be longer than three minutes but for the sake of this was condensed. This was a very information heavy conversation with her supplying information whether it was statistics or possible options, so she was the one mostly speaking. It would’ve been nice to get at processing this information with him, how it is impacting him while the news is so fresh, and reflect and support with him.

  62. Heather DeRousse

    The social worker did a great show establishing rapport and explaining how she can assist with addressing his questions and concerns. I agree with many comments about the social worker offer an apology and acknowledging the missed opportunity regarding him not being informed about infertility.

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