Fertility and Serious Illness: How to Support Patients with Reproductive Concerns

A serious illness diagnosis can interfere with one's hopes for the future in many ways—including disrupting plans for reproduction and family building. This disturbance can occur due to the serious illness itself or because of treatment effects on fertility. While a serious illness can be devastating at any age, this specific concern is particularly relevant to reproductive-aged adults, many of whom expect to be able to build a family as part of their natural lifecycle.

Underutilized opportunities exist for palliative care clinicians to identify and address distress surrounding fertility and reproduction in young adults living with a serious illness. Throughout this blog post, we share examples and suggestions for an interdisciplinary team (IDT) approach to this sensitive topic.

Multiple professional organizations, including the American Society of Clinical Oncology (ASCO) and the American Society for Reproductive Medicine (ASRM), recommend fertility counseling at diagnosis for reproductive-aged adults with cancer. However, studies show that counseling often does not occur or that patients are left with lingering concerns that can negatively impact their quality of life. Moreover, fertility counseling is often directed towards fertility preservation strategies and may overlook patients’ associated psychosocial or spiritual distress. There are no clear guidelines for ongoing fertility counseling for patients as their disease evolves.

Distress surrounding fertility/reproduction can assume several forms, including logistical and ethical, psychosocial and existential, and spiritual. Because fertility is a sensitive topic for many patients, clinicians may wonder how best to bring it up. While there are no evidence-based best practices around screening for distress in this area, we propose initiating a conversation with patients by asking the following question: “Many patients worry about how their disease and/or treatment might affect their opportunity to have children. Has this been on your mind?”

If relevant concerns surface, it is appropriate to engage the palliative care IDT for further support.

Below we address common fertility and reproductive concerns from patients and their loved ones through case examples, considerations for clinicians, and opportunities for further IDT support.

After his cancer diagnosis, a young, married man completed sperm banking. As his disease progressed, his wife became worried about how his illness would affect her opportunity to become a parent, and wondered how she may have their child in the future. She shared concerns with her husband's medical team about the financial impact of sperm banking and storage. She also shared that it was difficult to speak with her husband about her concerns, because he was hospitalized and they rarely had private time.

• Fertility preservation is expensive, usually costing thousands of dollars to isolate eggs, sperm or embryos, and hundreds of dollars per year for storage. This cost is often not covered by insurance, and few states legally mandate insurance coverage for fertility treatment.
• Legal regulations on custody of genetic material vary widely and are often murky. Generally, unless specified in fertility center paperwork or in a will, custody of stored eggs or sperm does not automatically transfer to another person. The patient’s written consent is recommended in order for others to use their stored genetic material.
• Posthumous gamete retrieval and reproduction are legally and ethically complex. The American Society for Reproductive Medicine’s ethics statement provides helpful guidance on this topic.

• While opportunities for financial support may be limited, social workers may be able to help research financial assistance programs.
• Nurses and social workers may help provide uninterrupted time for admitted patients to speak with their partners. Social workers and chaplains can also help counsel concerned family members on strategies for communicating with their loved one living with serious illness, if assistance is desired.
• If/when complex ethical or legal issues arise (e.g., requests for posthumous gamete retrieval without the patient’s prior written consent), involve ethics teams, risk management, and/or legal experts as appropriate.

A woman was diagnosed with cancer in her early 20s and was in and out of treatment for ten years, at which point her disease progressed and her prognosis shortened to months. She was well-known to the palliative care team and shared her grief in not becoming a parent—specifically the loss of the experience of pregnancy, labor, and the care of a newborn, which she imagined since childhood.

When a team member became noticeably pregnant, the patient became increasingly emotional during team visits. Helped by the longitudinal nature of their relationship, the clinician was able to utilize the patient’s feelings to catalyze concrete action and support, and together they identified that providing her with a lifelike newborn doll to interact with would be therapeutic.

• Anticipatory grief related to childbearing and parenthood can focus on many aspects of the experience. Learning what it means to a specific patient or family member allows clinicians to offer more targeted support.
• Teams should be aware that pregnant clinicians may trigger an emotional response for patients and families. This awareness can help clinicians prepare to respond authentically.
• Some patients can experience a parental role and/or identity outside of directly raising children, for example through interactions with other children in their community or through relationships with pets. Validating these relationships and their parental nature may hold therapeutic benefit.

• Longitudinal relationships lend themselves well to the level of depth and trust that may be needed to fully explore grief related to loss of an anticipated role such as parenthood.
• While the specific intervention described in the case above was targeted to be therapeutic for that specific patient and may not be appropriate for all, it serves as an example of how simulation, play, and visualization supported by a social worker or chaplain can support some patients to experience this aspect of their lives when they are otherwise unable to fulfill a parenthood role.

A woman and her partner created embryos prior to her cancer treatment. They came from different religious backgrounds and had conflicting spiritual perspectives on how to use the embryos. They requested counseling from a hospital chaplain to assist in their decision-making.

• In many cultures, fertility, pregnancy, and childbearing are rooted in spirituality. The impact of illness or treatment on fertility may have long-lasting spiritual consequences for patients and families.
• Assisted reproductive therapy (e.g., in vitro fertilization) can be a challenging topic within certain spiritual and religious traditions. For example, issues such as masturbation to produce sperm or the creation and/or ultimate disposition of embryos may have moral or religious implications for some patients. If these are not understood and incorporated into fertility counseling, moral or spiritual injury can result.

• Clinicians should incorporate a spiritual screening into their interviews with patients so that spiritual needs are not overlooked.
• Early involvement of a chaplain may help support patients and families with spiritual or religious distress related to decision making around reproduction during serious illness.
• Chaplains working in health care—particularly with patients whose illness or treatment may impair fertility—should have basic familiarity with different traditions’ philosophies regarding fertility/reproduction, and should reach out to other faith-based experts if specific concerns arise.

While further investigation into the best methods for supporting people living with serious illness, and their families, with fertility-related distress is greatly needed, palliative care clinicians are already well-positioned to communicate around such sensitive topics, and to facilitate interdisciplinary support.

Edited by Melissa Baron. Clinical review by Andrew Esch, MD, MBA.