New understanding.
“Everything Is Palliative Which Is Not Curative”: Perceptions and a New Understanding of Incurable Cancer.
[Blogpost BMJ Evidence Based Nursing is under construction, below the text can be found.]
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. These longer disease trajectories have generated questions around whether common care approaches, as reflected in the current philosophy of palliative care, are the most appropriate for these patients.
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 could be regarded as important implications in how we should care for patients living longer with incurable cancer.2 3 A 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, psycho-social and spiritual problems.” 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 examples. The added value of psycho-social/survivorship care as a care approach in patients with incurable cancer therefore seems to require further exploration.
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 the terminology surrounding their disease was 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 terminology that is considered most appropriate is not always the terminology that makes patients most happy (which for some is chronic, and for some could be palliative), but the terminology (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 life; the same holds for patients with an optimistic stance.
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 (e.g., an incurable form of cancer), 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 terminology such as “palliative” as accurate when referring to treatment for support and alleviation, reflecting core aspects of palliative care. However, some of the nurses considered such terminology inaccurate because of its connotations with an end-of-life phase, which was often not (yet) relevant for patients visiting the out-patient clinic; 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 palliative 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, 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 care and support. They can 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.
In the Netherlands, 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 terminology chosen to describe the severity of the disease on patients’ quality of life. Language and terminology used in (palliative) cancer care are important in fostering approaches to care. More reflection is needed to explore how we should talk to patients living longer with an incurable form of cancer, also because some forms of incurable cancer can now sometimes even be cured taking into account the new advances in oncology.
