Consultant Editor Brian Nyatanga Editor Sean Boyle Group Classified Manager Daniel Doherty Circulation Director Sally Boettcher Associate Publisher, Medical Education Tracy Cowan Production Manager Kyri Apostolou Publishing Director Andrew Iafrati Managing Director Anthony Kerr Chief Executive Officer Ben Allen Editorial enquiries: email@example.com Sales enquiries: firstname.lastname@example.org Editorial Board AUSTRALIA Donna Drew Clinical Nurse Consultant in Paediatric Oncology and Palliative Care, Sydney Children’s Hospital Jason Mills University of the Sunshine Coast, Queensland Jane Phillips Professor of Palliative Nursing and Director of the Centre for Cardiovascular and Chronic Care, University of Technology, Sydney BELARUS Anna Garchakova Director, Belarusian Children’s Hospice BELGIUM Tine De Vlieger General Coordinator for Palliative Care, University of Antwerp IRELAND Julie Ling CEO of the European Association for Palliative Care, Our Lady’s Hospice, Dublin ITALY Valentina Biagioli Research Fellow in Nursing and Allied Health Professional Development, Continuing Education and Research, Bambino Gesù Children’s Hospital, Rome, and Lecturer, Sapienza University of Rome NORTHERN IRELAND Sonja McIlfatrick Professor of Nursing, University of Ulster SWITZERLAND Philip Larkin Kristian Gerhard Jebsen Chair of Nursing Palliative Care, Professer, Centre hospitalier universitaire vaudois, University of Lausanne
UGANDA Julia Downing Honorary Professor in Palliative Care, Makerere University, Kampala UNITED KINGDOM Bridget Johnston Professor and Florence Nightingale Foundation Chair of Clinical Nursing Practice Research, University of Glasgow and NHS Greater Glasgow and Clyde Daniel Kelly RCN Chair of Nursing Research, Cardiff University Diane Laverty Nurse Consultant in Palliative Care, St Joseph’s Hospice, London Carole Mula Macmillan Nurse Consultant in Palliative Care and Professional Lead Nurse for Division of Clinical Support Services, Christie NHS Foundation Trust, Manchester Brian Nyatanga Senior Lecturer, University of Worcester Julie Skilbeck Senior Lecturer, Sheffield Hallam University Dion Smyth Lecturer-Practitioner in Cancer and Palliative Care, Birmingham City University Anna-Marie Stevens Nurse Consultant in Symptom Control and Palliative Care, Royal Marsden NHS Foundation Trust, London UNITED STATES Jennifer Baird Harvard-Wide Pediatric Health Services Research Fellow, Division of Medicine Critical Care, Boston Children’s Hospital Patricia Berry Professor and Director of Hartford Center of Gerontological Nursing Excellence, Oregon Health and Science University
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Reproductive support for adolescents and young adults
When nurses commit to a palliative care approach, they aim to improve the quality of life of patients and their families who are facing problems associated with life-threatening illnesses. It is not uncommon that serious illnesses, such as malignancies, develop in adolescents and young adults (AYA) during their reproductive years. While caring for AYA, nurses need to consider specific problems, such as the patient’s anxiety about the future, their desire to preserve fertility and need for reproductive support. Providing supportive care to AYA in a holistic way may also entail recognising the right to exercise their reproductive autonomy against the odds of an uncertain prognosis. Moreover, unsolved questions remain, especially for women who desire the experience of pregnancy, birth and parenting (Linkeviciute et al, 2020). For example, nurses should evaluate whether pregnancy impairs the prognosis, or whether fertility-preservation facilitates false hope and unfair allocation of resources. Nurses should also consider whether patients are stopping treatment to attempt a pregnancy, given the paucity of clinical data on the effects of many palliative-related medications on foetal integrity and growth. Additional ethical issues arise when considering the possibility of leaving a minor child bereft of one parent. When we reflect on why certain women seek fertility preservation or pregnancy despite an uncertain future, we admit that pregnancy can remain a fulfilling desire (Catania et al, 2019). This is especially true for those AYA who are not experiencing a significant worsening of symptoms and believe in an unwavering commitment: ‘Per aspera ad astra’ (through hardships to the stars). Pregnancy in the light of a life-threatening condition needs to be demystified, while nurses at the forefront of designing patient-centred health services need to commit to shared decision-making. As such, early integration of palliative care could involve interdisciplinary collaboration and effective communication with AYA aimed at supporting their autonomy (Saad et al, 2020).
It can be argued that pregnancy in situations in which the parent faces a lowered life span or ability to care for a child might be unethical, especially if it is risky to the mother’s and offspring’s health. In addition, associated higher abortion rates may lead women to reconsider their reproductive choices even in the light of a good prognosis. Thus, counselling patients who are seeking pregnancy despite advanced disease and/or uncertain prognosis is still challenging.
There are ways to help us understand how nurses can better relate to AYA in a more compassionate manner. For instance, nurses can support complex decisionmaking and discuss all options with all patients, no matter what their individual circumstances are, to help them maintain a positive attitude. Nurses should balance autonomy and beneficence to the patient, along with beneficence to the foetus (Alpuim Costa et al, 2020), where an honest discussion of the prognosis is paramount (Buckingham et al, 2020).
Ultimately, the nurse–patient relationship can positively moderate how patients deal with risky reproductive decisions and cope with clinical uncertainty. Such competency in ethical reasoning would help nurses provide high-quality reproductive support for AYA. IJPN Valentina Biagioli Research Fellow in Nursing and Allied Health Professional Development, Continuing Education and Research, Bambino Gesù Children’s Hospital; Lecturer at Sapienza University of Rome, Italy
International Journal of Palliative Nursing June 2022 Vol 28, No 6