A Canadian expert has developed a guide for family members caring for people with terminal illnesses. The expert, Carole Robinson, is a researcher at the University of British Columbia (Canada) and spoke about this project at the Institute for Culture and Society (ICS), the University of Navarra’s humanities and social sciences research center.

"If a terminal patient wants to spend the end of his life at home, the health system expects his family to take care of him, but does not offer knowledge or support for the task," she says. The guide seeks to alleviate the lack of training that is common among caregivers. "They do not know what the future will be like, nor do they have the skills to care for a patient, but they are committed to doing so," she notes.

According to Professor Robinson, home care becomes progressively more complicated and relatives are often unaware of the decisions they will have to make or the care they will have to provide. What can begin by accompanying a patient to the doctor may end up involving taking charge of their hygiene or injecting medication intravenously. "These are skills that medical professionals seem to take for granted," she reiterates.

Step by step care

The guide is divided into four points with questions for caregivers. The first step incites caregivers to reflect on their current situation and how the patient’sillness is being managed. Then, it helps caregivers anticipate the possible evolution of events and consider what is important to both the patient and caregiver. Third, it looks into local resources and access to them. Finally, a decision is made on what is best given the present circumstances.

To perform these steps, the expert recommends looking at the guide together with an experienced person, be it a volunteer or a professional. If the situation changes, the steps for reaching a new conclusion can be re-examined.

Robinson indicates that, among other issues, the guide introduces future situations that caregivers will face, something that she considers necessary because "some crises can easily be anticipated." For example, the patient may not be able to go to his bedroom if he has to climb stairs. This can be foreseen by arranging a ground-floor bedroom.

For the time being, the guide is only used in research, but the results thereof show that it is very useful and complete, and the researcher expects to disseminate it online. "We are working with the Canadian Virtual Hospice to develop an online and interactive version," she says.

Carole Robinson emphasizes the need to improve on some of the normal challenges of care, such as time management because it is difficult to predict what may happen in long-term illness. Life-care balance is another important challenge since many people have to leave work to take care of their family member, while also taking care of children, pets, a home, etc., as is the fact that women mostly care for sick family members.

Carole Robinson spoke about these issues at a qualitative research course organized by ICS’s ATLANTES Program, where she participated as a speaker.

• Check out the guide here