Placing patients at the centre of the decision making process in advanced lung cancer

This week saw the publication of the much awaited PACT study by the Marie Curie Palliative Care Research Centre.  In this landmark study, researchers followed the journey of patients with advanced lung cancer as they navigated through the process of deciding whether non curative chemotherapy would benefit them or not. Despite the best intentions, chemotherapy may have serious complications in those with advanced disease increasing the risk of early death, unpleasant side effects and worsening quality of life. Careful planning and discussion is needed in order to make an individualised approach to treatment.

The study’s Chief Investigator Professor Annmarie Nelson explained “I was struck by the statistic that 10% of patients with advanced lung cancer die within 30 days of commencing or whilst on chemotherapy. It seemed important to me that we take a careful look at how we decide whether chemotherapy is in a person’s best interests or not when their prognosis is limited to months.”

The researchers observed how decisions were made within a multidisciplinary team of lung cancer specialists and how these decisions were subsequently discussed with patients. Patients were interviewed to explore their experiences of the decision making process and how helpful they found the consultation. Perspectives were also sought from family members, healthcare professionals and expert stakeholders comprising a total of 99 interviews.

The study found that initial treatment recommendations didn’t always take account of patient’s personal life priorities and social circumstances in the context of a terminal illness, and the impact that chemotherapy might have. The focus of discussions was often on the cancer and not the person, something which appeared driven by a pressure to initiate treatment plans within set timeline targets. Both doctors and patients often struggled with discussions around the life-limiting nature of their condition where prognosis was often measured in months. This prevented open conversations about alternatives to chemotherapy such as focusing on supporting wellbeing, participation in family life and early access to high quality palliative care.

Dr Jason Lester, Lung Cancer Oncologist and member of the research team said “At a time when cancer treatment decisions are increasingly based on tumour genetics and immunological profiles, the risk is that in the context of advanced lung cancer the patient’s own voice and needs are overlooked which might result in avoidable harm.”

Professor Nelson added “Early palliative and supportive care should be more openly explored alongside, or as an alternative to palliative chemotherapy, and the outcome of any treatment measured on the basis of what the patient has defined as important rather than on tumour size alone. In this way the benefits of any treatment will better reflect the impact on lived experience and quality of life, helping lung cancer patients and their families make more informed choices about their care.”

The PACT study raises several opportunities to improve how lung cancer teams can place patients at the centre of the decision making process. The Research Centre are already developing a tool for supporting teams in this, as well as reviewing the current methods used for evaluating a patient’s fitness for chemotherapy.

The PACT study was funded by the Stepping Stones Lung Cancer Research Fund at Velindre Cancer Centre. The publication can be found here: Chemotherapy decision-making in advanced lung cancer: a prospective qualitative study