Outnumbered yet needed: The Lung Cancer Nurse Specialist.

Abstract

See cover image As we celebrate the International Year of the Nurse and Midwife 2020, nurses worldwide are facing an unprecedented time, not only for our profession but also for our patients. Coronavirus disease 2019 (COVID-19) presents us with an entirely new set of challenges for both staff and patient care, in addition to the many existing challenges we, Lung Cancer Nurse Specialists (Lung CNS), face on a day-to-day basis. While the world is focused on the COVID-19 crisis, Lung CNS continue their pivotal role in ensuring lung oncology patients receive timely and equal access to care. Worldwide, lung cancer is the leading cause of cancer mortality. In 2019, 12 800 Australians were diagnosed with lung cancer. Approximately half of these patients presented with advanced disease.1 Despite the advances in treatment over the past two decades, the 5-year survival rate remains low at 17%.1, 2 Globally, the number of dedicated Lung CNS positions remain low and accurate figures are difficult to obtain due to many nurse specialist roles working across multiple tumour streams. However, we do know there are only 12 full-time equivalent Lung CNS positions within Australia. In view of those newly diagnosed Australians with lung cancer, this equates to an annual caseload of more than 900 patients to one Lung CNS.3 The role of the Lung CNS is multifaceted. Fundamentally, the role is essential to ensuring that lung cancer patients have early access to quality care, from pre-diagnosis through to treatment and palliative care. Moreover, the Lung CNS delivers many roles and responsibilities, some of which are (but not limited to) clinical care, patient care coordination, provision of information to patients and families, research and education, identifying and leading safety and quality improvements, advocacy, preventative health and being an active member of the multidisciplinary team. Importantly, the Lung CNS provides a consistent point of contact for patients and their families and multidisciplinary team members throughout the trajectory of care. Such consistency is pivotal in assisting with and improving time delays surrounding access to care, diagnosis and treatment. Research shows patients having access to a Lung CNS are 34% more likely to receive access to treatment, compared to those who do not have access to a Lung CNS.2 This ultimately improves patient satisfaction and outcomes, all-the-while decreasing unnecessary hospital presentations and admissions.4 Yet, despite the beneficial impacts that the Lung CNS delivers to lung oncology patients and the healthcare system more broadly, there still remains an inadequate number of Lung CNS roles worldwide. Sadly, evidence reports that people living with lung cancer have the highest unmet needs, the highest levels of psychological stress, the poorest quality of life and tend to underutilize hospital and community support services.4 It is therefore imperative that all people living with lung cancer have access to a Lung CNS to receive essential support and coordination of their care.2, 5 When considered in view of other cancer types and supports available, this argument is exemplified. For example, consider that lung cancer kills more than three times the number of Australians every year when compared to prostate cancer or breast cancer. Yet, for these cancer types, they have approximately 70–400 plus (respectively) dedicated specialist cancer nurses. Furthermore, they have recently been allocated a combined $45 million in the 2019–2020 Australian federal budget to fund further specialist cancer nurse positions.2 It is disappointing that the 2019–2020 budget allocated zero funds to enable an increase in Lung CNS positions. Given this, it could be assumed that particular cancer types are considered more important than others and, moreover, that higher value is placed on those cancer types being supported by dedicated nurse specialists. So, why the absence of funding for these much needed Lung CNS positions? It is well known and widely documented that the general population has a negative perception and attitude towards lung cancer, which drives the stigma that surrounds the disease.6 In 2017, the Lung Foundation Australia conducted a nationwide consumer survey on stigma in lung cancer. Results showed more than one-third of individuals believed that lung cancer patients are ‘their own worst enemy’. Such lack of empathy and negative attitudes are largely attributed to the fact that there is a high association between tobacco smoking and lung cancer.7 Indirectly, but yet fundamentally, this attitude contributes to the critical shortage of Lung CNS positions. With the current situation and impact that COVID-19 is having on our patients, it presents a unique opportunity for Lung CNS to raise not only the profiles of lung cancer and lung cancer patients, but also the profile of the Lung CNS role. Lung CNS are demonstrating their adaptability and willingness to educate, support and continue to coordinate timely access to care. Nurse-led lung cancer research is also demonstrating its agile ability to pivot focus on meaningful and strategic COVID-19-related questions. In summary, compelling evidence shows that Lung CNS play an important and significant role in delivering a variety of positive outcomes to people living with lung cancer and their families, to multidisciplinary teams and to healthcare systems. Yet, until negative perceptions held by the general population of lung cancer are dismantled, it is my opinion that future funding will not be allocated towards increasing the number of Lung CNS positions. The small, but mighty group of Lung CNS remains positive, passionate and driven to change societal attitudes, advocate for their positions and all people living with lung cancer. The author thanks Dr Vanessa Brunelli for her expertise, support and unwavering passion towards defining and advancing the Lung Cancer Specialist Nurse role.