The transition from palliation with anti-cancer treatment to palliation without anti-cancer treatment: a patient and family experience

Abstract

Cancer is a growing public health problem and killed slightly more than 8 million people in 2012 of which 5.3 million lived in the less developed regions of the world. Anti-cancer therapies such as radiotherapy, chemotherapy and surgery can be used to palliate cancer patients. The decision to stop anti-cancer treatment is a sensitive and difficult one and agreement between patient and physician and timing are important factors to consider when making such a decision. When transitioning from receiving palliative anti-cancer treatment to palliative care without anti-cancer treatment, patients are referred to other health care professionals for “pure” palliative care. As a result, the patient and family have to leave behind the care they received from the health care professionals involved in the anti-cancer treatment – a situation which could add to their suffering. The purpose of the study was to explore how patients treated at a private cancer care setting in the Southern Cape region of South Africa and their families experienced the transition from palliation with anti-cancer treatment to palliation without anti-cancer treatment. An exploratory qualitative design was selected for this study. The study setting was an oncology unit in the Southern Cape forming part of the private health care sector. The population consisted of all patients and their families treated at the specific oncology unit who were transitioning from palliation with anti-cancer treatment to palliation without anti-cancer treatment. Purposive sampling selected the sample, whilst qualitative interviews were used to gather the data. The data were analysed using Tesch‟s open coding approach. The theory of Navigating Unknown Waters underpinned the study. Eighteen (18) people participated in the study - nine patients and nine family members. Four themes arose from the data gathered from the patient participants and three themes arose from the family member‟s data. Transitioning from palliation with anti-cancer treatment to palliation without anti-cancer treatment was a traumatic experience for both the patients and their families, which added to their suffering. When learning nothing more could be done, patients and family participants experienced shock. Being confronted with death made patient participants feel scared and for some, euthanasia seemed to be an option whilst others hoped for a cure with alternative therapies. Some family members were able to accept the impending death of the patient, whilst others did not want to think of what was lying ahead. Both the family and the patient`s felt sad and some, even abandoned by the health care team responsible for the palliative chemotherapy, whilst others were happy to be referred to a palliative care team. Participants had to deal with a large symptom burden, with pain being the most debilitating of all. Family participants felt distressed and helpless whilst having to care for the terminally ill patient, during which time having to witness the deterioration of their loved one.