Dr Hilde Buiting has worked in the field of oncology and palliative care since 2005. In the past couple of years she has focused on patients living longer with the diagnosis of incurable cancer. In this blog post, she explains to what extent this patient group differs from the ‘mainstream’ palliative patient and the challenges that confront this specific group.
Luckily, far more people are nowadays living longer with incurable cancer. Patients in the Netherlands with breast cancer, initially diagnosed with metastatic disease, now live five years or longer in 50 per cent of cases (Netherlands Cancer Registry).1 For other cancers, similar time trends are available. Even in cancers with a worse prognosis, such as lung cancer, possible life prolongation due to new treatment options has substantially increased.2
Initially, I started this project on patients living longer with incurable cancer because of the taboo surrounding the explicit discussion of palliative care in the hospital. Interestingly, there were many patients with metastatic disease, and healthcare professionals practised many elements of palliative care. Our recent study showed that these patients did not suffer much from receiving anti-cancer treatment (which is less often considered burdensome compared to 10-15 years ago). At the same time, however, those patients may experience dilemmas patients in the terminal phase of their disease, or patients initially being cured, are not confronted with.3 Since we started the project we have discussed this topic with many medical professionals in the field and this disease phase is nowadays getting more and more attention.
During the time period of the project a switch in mindset seemed to have happened among primary care physicians due to increased awareness about this topic. What I find particularly challenging is that living longer with incurable cancer also seems to include considering care options other than the provision of (early) palliative care only, e.g. survivorship care. This is particularly relevant in the primary care setting.
As opposed to palliative care, survivorship care focuses on quality of life as well as survival and includes interventions aimed at healthy living, such as weight control and cognitive behaviour therapy. Although survivorship care is getting more attention in cancer research, the studies that focus on patients with metastatic cancer is scarce.4
Switch in mindset
The lack of studies is understandable. In providing survivorship care, a different mindset seems to be required as compared to the provision of palliative care. What I’ve been noticing so far is that this group of patients can be especially difficult for palliative care professionals themselves. The palliative care approach, in which advance care planning,5 spiritual issues6 and preparation for the approaching death 7 are of paramount importance, seems to be somewhat less important in this patient group. In having ‘chronic’ incurable cancer, ‘keep on going’ seems the most important intrinsic drive.
I am fascinated about this group of patients because they (also) experience many positive things while being ill. They, for instance, experience growth in various aspects. Moreover, the dilemmas these patients face are new for healthcare professionals as well. I hope this blog post will also help in discussing this research topic more openly in an international context.
- Netherlands Comprehensive Cancer Organisation (IKNL). Accessed from the internet: www.iknl.nl
- Temel JS, Gainor JF, Sullivan RJ, et al. Keeping Expectations in Check With Immune Checkpoint Inhibitors. Journal of Clinical Oncology:2018:Jco2017762146.
- Buiting HM, van Ark MAC, Dethmers O, et al. Complex challenges for patients with protracted incurable cancer: an ethnographic study in a comprehensive cancer centre in the Netherlands. BMJ open 2019;9(3):e024450.
- Starreveld DEJ, Daniels LA, Valdimarsdottir HB, et al. Light therapy as a treatment of cancer-related fatigue in (non-)Hodgkin lymphoma survivors (SPARKLE trial): study protocol of a multicenter randomized controlled trial. BMC Cancer 2018;18(1):880.
- Sudore RL, Lum HD, You JJ, et al. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. J Pain Symptom Manage 2017;53(5):821-32.e1.
- Best M, Butow P, Olver I. Palliative care specialists’ beliefs about spiritual care. Supportive care in cancer:2016;24(8):3295-306. doi: 10.1007/s00520-016-3135-0.
- Clayton JM, Butow PN, Arnold RM, et al. Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study. Support Care Cancer 2005;13(8):589-99.
- Contact Dr Hilde Buiting via the EAPC LinkedIn group.