Incurable Cancer

Advances in oncology have resulted in protracted disease trajectories in incurable cancer patients. Accordingly, it is sometimes argued that some forms of cancer seem to be turning into a chronic disease. Surprisingly, little information is available as yet about experiences with protracted incurable cancer. Studies focusing on the last phase of life or on advance cancer in general may help provide some ideas.
Little has been written on how these protract disease trajectories are challenging the ability of patients to cope with the disease. Walshe et al, however, its report on successful coping strategies for patients living with advance cancer, illustrating the importance of focusing on patients’ personal coping strategies.
This study is part of a larger project that examines the experiences, needs and wishes of patients with protract incurable cancer and their healthcare professionals, using a mix methods ethnographic design. For this study, a qualitative database was use in which the experiences, needs and wishes of patients with protract incurable cancer were collected. Data collection start in 2015.

Interviews with bereaved family

It consisted of short conversations with patients at the day-care unit and in-depth interviews in the hospital or home setting, as well as some interviews with bereave family members. Observational research start in July 2015. In the first phase, field notes were make in the ‘backstage’ regions of practice to generate knowledge about how and why patients and healthcare professionals behave as they do. HMB sat with, observed and sometimes accompanied healthcare professionals.

The research questions for this specific study were inspire by problems they notice while working in or observing actual medical practice. Thus, the research questions were by definition inspire by problems experience by the patients themselves. They did not involve patients in the design of the study. However, during recruitment and the execution of the study they did ask patients about possible suggestions to further improve the study.

Finally, they intend to send there study participants a publication with there results at the end of the day. All conversations and observations were coded and analyse using the programme Atlas-ti V.8.2. They (MvA and HMB) read through 12 conversations separately at different times to search for themes. These themes were discuss to check for interpreter consensus. Subsequently, a scheme develop to index text fragments with similar content (in Atlas-ti V.8.2).

Protracted incurable cancer

In analysing the themes, hypotheses emerge and were check against the data. All the authors evaluate whether the final quotes used in the right (medical) context. According to Dutch policy, the study did not require a formal review by an ethics committee; so because the content of the interviews and observations was not consider to be potentially incriminating.
Facing death (progression of the disease) and surviving (remission of the disease) several times could be overwhelming for patients. During these periods, support was greatly appreciated. Most patients grew accustom to having protracted incurable cancer. The associate fear then slowly faded. As most patients regard cancer as part of who they were; so they generally feel no need to talk about their disease.
This explorative ethnographic study can be consider a first step towards discovering; that how recent developments in cancer will shape clinical and research domains in the context of protracted incurable cancer. Also chronic disease management, including definitions regarding the curative/palliative dichotomy. By providing insight into the social dynamics of healthcare; so their study may increase awareness about the current developments in the care of patients with protracted incurable cancer.
Their study shows that patients with protracted incurable cancer have different experiences to some extent to patients with a common palliative trajectory. Their physical and mental status often fluctuated; so partly because of unpredictable responses to cancer treatment. Instead of slow physical deterioration; so their patients at a certain point grew accustom to a stable situation and accept the minor physical symptoms.