Hilde Buiting, PhD
With Femke Botman, MSc, Patrick Brown, PhD, Vincent Ho, MSc, Gabe Sonke, MD, PhD
Patients with incurable cancer often do not perceive themselves as “palliative”, a connotation they more commonly associate with impending death. Instead, these patients often prefer the word “chronic.” On the basis of nurses’ experiences we would like to initiate a new understanding of incurable cancer, partly due to new and better medication developments.
Due to advances in anticancer therapies, a diagnosis of incurable cancer is no longer immediately associated with imminent death.1 Today, many patients with some form of metastatic disease can live for years, particularly with some forms of hematologic, breast, colon, or prostate cancers, or with some forms of melanoma. These longer disease trajectories have generated questions around whether common care approaches, as reflected in the philosophy of palliative care, are the most appropriate for these patients. Although palliative approaches (e.g., the relief of symptoms in patients who are no longer undergoing active anticancer therapy) are still considered as the common basis to care for these patients, various challenges and dilemmas have emerged regarding how to meet the specific needs of patients living longer with incurable cancer.
The growing number of patients with incurable cancer exhibiting prolonged disease trajectories has shifted our understanding, or at least our recognition, of the palliative care setting. This can have important implications in how we should care for patients living longer with incurable cancer.2 3 4A palliative care approach aims to improve “the quality of life of patients and their families through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial and spiritual problems.”5 Psycho-social/survivorship care, on the other hand, focuses on quality of life as well as on survival and includes interventions aimed at healthy living, and is therefore much more concerned with “doing”: Lifestyle interventions to improve patients’ quality of life such as physical exercises or yoga therapy are some examples. The added value of psycho-social/survivorship care as a care approach in patients with incurable cancer requires further exploration.6
Anecdotal information shows that patients with incurable cancer often do not perceive themselves as “palliative”, a connotation they more commonly associate with impending death. Instead, these patients often prefer the word “chronic.” In a discussion about the use of palliative versus chronic, we spoke with nurses about how they cared for patients with some form of incurable cancer. The project revolved around nurses’ understandings and their approach towards patients. During this observational study, the importance of patients’ disease label was often mentioned, as it became apparent that patients visiting the outpatient unit sometimes survived 5, 6, or sometimes even 10 years, all the while being aware of their incurable cancer. We explored how nurses approached and cared for such patients. One of the nurses, for instance, told us, “‘Chronic disease’… Well, that doesn’t do justice [to the situation] either… You could also say that MS [multiple sclerosis] is a chronic disease.” The interviewer noted that the term palliative is not used in the setting of multiple sclerosis, and the nurse responded, “That is kind of weird, actually. It is not curable either. Chronic… It does quite cover it, but at the same time maybe compromises the threat [of incurable cancer].”
On the one hand, from an ethical point of view, we would argue that the disease label that is considered most appropriate is not the disease label that makes patients most happy (which for some is chronic, and for some could be palliative), but the disease label (and accompanying information) that provides patients with a clear understanding in order to be able to make adequate decisions about treatment, care, and the remaining part of their lives.
On the other hand, however, from a patient-centered point of view, we could ask whether happiness or high quality of life would be the most appropriate conceptual starting point for considerations and decision-making about care and the remaining part of a patient´s life. Various studies have shown the added value of high-quality relationships on patients’ quality of life7; the same holds for patients with an optimistic stance.8
From the perspective of health care professionals, not all nurses working at the outpatient oncology unit who participated in our project reported knowing whether they were treating patients with a curative or palliative intent, but instead described adopting a patient-centered approach. For nurses, this meant that their primary aim was to see the patient and attend to their needs. Nurses generally described the label “palliative” as accurate when referring to treatment for support and alleviation, reflecting core aspects of palliative care. However, some of the nurses considered the label inaccurate because of its connotations with an end-of-life phase, which was often not (yet) relevant; for instance in the case of patients who were functioning rather well and could live for years with some form of metastatic cancer.
As another nurse said, “Palliative could be regarded as an old term. Now, actually, everything is palliative which is not curative. So, it has become a kind of exclusion criterion. With modern advances, people who are treated palliatively live for 10, 15 years… So, I find palliative a somewhat unpleasant term.”
That finding—that nurses at the outpatient clinic were not always fully aware whether treatment intent was curative or palliative—has interesting implications for clinical practice. As with the most appropriate terminology, there are multiple avenues of thought. On the one hand, one could argue that being aware of treatment intent is paramount in delivering appropriate care. It is, for instance, highly plausible that patients with incurable cancer would like to speak about certain dilemmas that are not relevant to patients whose cancer can be cured, and vice versa. On the other hand, this (and other) outpatient clinics have been described as positive and energetic,2 where talks about death and dying were often preferably averted. This is understandable, especially at an outpatient clinic, where nurses’ focus is primarily aimed at providing comfort during the provision of anticancer treatment, and not at having difficult conversations. That being said, the awareness of their incurable cancer inevitably confronts patients with their vulnerability. Although nurses do not need to touch upon difficult topics themselves, being aware of patients’ incurable disease could in some situations aid in following a more sensitive approach. Our findings suggest that, although they do not need to use the word palliative in front of patients (which may sometimes even be better, because nurses’ visits at the outpatient clinic are usually short), they need to be aware of what patients with incurable (but not end-stage) cancer require in terms of (palliative) care and support. They can offer hope and stimulate these patients to observe the positive things in life as much as possible if relevant in this specific situation at the day-care unit. Nurses’ considerations in providing patient-centered care by sometimes refraining from the use of the word palliative are therefore understandable and in line with current tendencies in the oncology literature.9-11
In the Netherlands, the Antoni van Leeuwenhoek (a comprehensive cancer hospital) uses the term “supportive care team”, as opposed to “palliative care team,” and various hospitals in other countries are increasingly using similar language. Nurses and other health care professionals can benefit from increased attention to the impact of the label chosen to describe the severity of the disease on patients’ quality of life. Language and disease labels used in (palliative) cancer care are important in fostering approaches to care and suffering.12 More reflection is needed to explore how we should talk to patients living longer with an incurable form of cancer.
Dr. Buiting is a researcher across the interface of palliative care and oncology since 2005. As a medical scholar, she uses the knowledge gained from observations in medical practice into scientific studies, which is also one of the drives that keeps motivating her.
Mrs. Botman is a nurse student in the Department of Medical Oncology at Amsterdam UMC. In 2018 she obtained her master’s degree in medical anthropology and sociology at the University of Amsterdam.
Dr. Brown is associate professor of sociology at the University of Amsterdam. He carries out research into risk, trust, hope, and other social processes by which professionals, patients, and organizations cope amid vulnerability and uncertainty. Follow him on Twitter @paddster.
Drs Ho is a cancer epidemiologist working at the Netherlands Comprehensive Cancer Organization (Integraal Kankercentrum Nederland, IKNL).
Prof. Sonke is a medical oncologist and cancer epidemiologist working at Antoni van Leeuwenhoek/Netherlands Cancer Institute.