A qualitative study of 22 cancer patients shows how acceptance is key to living as well as possible, although it requires time and is a process with ups and downs. Led by the University of Navarre, this research emphasizes the importance of focusing on life rather than on the disease.
Each year 14.1 million new cases of cancer are diagnosed, 8.2 million people die from the disease and another 32.6 million live with it. In recent years, new therapies have favoured an early diagnosis and a progressive increase in life expectancy.
It is no longer rare to see cancer as a chronic pathology that, although it cannot be cured, can be controlled for many years. For oncologists, this implies a new challenge: to increase the quality of life of patients in this period.
A study spearheaded by the Instituto Cultura y Sociedad (ICS) of the University of Navarre, in which the University of British Columbia (Canada) has also collaborated, analyses the experience of 22 people with advanced cancer who receive treatment in three health centres in Spain.
The number of patients is reduced because it is a qualitative research, that is to say, it requires a very close follow-up, with in-depth interviews. The so-called theory of how to live well with chronic diseases, proposed in 2017 by one of the authors of this new work, Carole Robinson was applied to this group.
This theory was developed from a field study of 43 patients and describes five interconnected phases: struggle, acceptance, living with chronic disease, sharing experience, and rebuilding life.
Qualitative research techniques have shown what this process is like for this type of patient. According to María Arantzamendi, a researcher at the University of Navarre and the main author of the new study, “the process of living with advanced cancer revolves around the awareness of the finitude of life with five phases that patients can relive throughout the process.”
The first phase begins with a struggle, when patients are either diagnosed with advanced cancer or are aware that something is happening to them; they experience shock, anger, anxiety and fear.
Participants recognized that, over time, they realized that this struggle created additional difficulties for them - even if they returned to it following complications or bad news - and that it was counterproductive for them to move on with their lives.
“That leads to the second step, to accept, to a greater or lesser extent, the illness, the limitations that arise, the finitude... and to cope with the situation with relative peace", states Arantzamendi.
The later phase continues to integrate advanced cancer into everyday life in order to minimize its impact. “The key is to be aware of one’s life span. This makes them focus on what really matters, set priorities and make choices,” she adds.
For the researchers, four strategies facilitate this challenge: making adjustments in daily life to integrate treatments or problems derived from the disease, maintaining a positive attitude, normalizing the natural aspects of life - for example, that all human beings die - and having hope - being open to new possibilities, such as feeling better.
The fourth phase consists in sharing the experience of living with the disease and involves maintaining family and social relationships that help one feel supported. The authors indicate that it is necessary to have someone to count on, especially in the family environment. They also stress the importance for patients of protecting their loved ones.
The last phase shifts attention away from oneself and the disease to ‘living in the moment.’ “Participants made significant contributions to their family, community and society, such as donating their bodies to science, helping others or planning for their family's well-being after their death,” Arantzamendi stresses.
Likewise, the strategies they used to maximize life time were fundamentally two: paying full attention to moments of joy or beautiful things and controlling thoughts, particularly those related to illness and death.
This study, published in the journal Qualitative Health Research, has several implications for practice. The authors stress that acceptance is key to living well with advanced cancer, although it requires time and is a process with ups and downs.
Therefore, they do not recommend health professionals to focus prematurely on acceptance, as this may interfere with the construction of a supportive therapeutic alliance. On the other hand, they emphasize that maintaining a positive attitude is of great importance, but that this does not imply leaving aside one’s awareness of the proximity of death.
“Having this possibility on the horizon favours the patients’ focus on living well, a better acceptance of palliative care and a greater openness to meaningful conversations with the health team about the end of their lives,” says Arantzamendi.
The researchers emphasize the importance of love and family support for a good life at the final stages of the disease. “This also requires the involvement of health professionals, especially as regards helping patients to find the balance between sharing their experience and keeping information in order to protect their loved ones,” she concludes.
María Arantzamendi, Noelia García-Rueda, Ana Carvajal, Carole A. Robinson. ‘People With Advanced Cancer: The Process of Living Well With Awareness of Dying’. Qualitative Health Research, diciembre 2018. https://doi.org/10.1177/1049732318816298
Robinson C. A. ‘Families living well with chronic illness: The healing process of moving on’. Qualitative Health Research, 27, 447–461. Marzo 2017. Doi:10.1177/1049732316675590