Talking about the final stage of life in the face of advanced disease is a challenge for patients, family members and healthcare professionals alike. However, talking with the patient about what is important to him can be crucial in this situation. "Palliative care is not about death, but about living well with advanced disease," according to Carole Robinson, professor emeritus of Nursing at the University of British Columbia (Canada) and visiting researcher within the ATLANTES Program at the Institute for Culture and Society (ICS) ofthe University of Navarra.

The expert visited the University of Navarra to offer a workshop on Serious Illness Conversation organized by the ATLANTES Program. The initiative emerged as a program developed jointly with Brigham and Women’s Hospital and Harvard T.H. Chan School of Public Health in the United States. In particular, it offers a framework to help healthcare professionals have meaningful conversations with a patient being treated for an advanced disease.

The workshop addressed when to start the conversation, the steps to take over time and even the exact words to use since studies exist on the words that most patients and family members find acceptable.

"If we talk to patients about what is relevant to them, we are able to figure out what they value, which guides clinical practice and helps us offer superb individualized care," Robinson notes. For example, if a person faced with the prospect of death wants to spend quality time with his family, the doctor may try to offer the possibility of home care instead of admitting him into an Intensive Care Unit.

"These conversations explore key aspects of how patients want to live their lives; palliative care is all about still experiencing quality of life with a disease," she says. According to the researcher, these conversations improve general communication and medical decision-making, help the family mourn–with the reassurance that "the end of life has had meaning" – and, as it has been shown,they reduce patients’ anxiety and depression.

Afraid to talk

The Canadian expert laments that these conversations are not currently frequent in a large number of cases. This is due to several factors, including professionals’ fear that they might increase patients’ suffering, quash their hope, make them think they are running out of time or that they are not sufficiently prepared.

Robinson corrects these myths, citing research that has shown that these conversations can be combined with other tasks within working hours and that they improve professionals’ satisfaction with their work, their abilities and the patient-professional relationship. "Getting to know the patient as a person leads to the assurance that the care offered aligns with that human being," she explains.

But professionals are not the only ones afraid to converse. Patients are sometimes reluctant to talk about the proximity of death with their loved ones, she says. Thus, they often do not share their experiences with the disease so as not to make their relatives suffer and not to be a burden. This disappears when talking with a healthcare professional: "A study has shown that people who receive palliative care early on with this type of conversation lived longer than those who did not receive this care."

Care goes hand in hand with research

Robinson affirms that, "research is necessary to convince others that lived experience is compatible with palliative care and that it is a positive intervention." In that sense, she pointed out that all the steps and results in the Serious Illness Conversation course are backed by scientific research.

She acknowledges that there has been great progress in understanding the experience of having an advanced disease and how to help the ill. However, she believes that efforts are still needed to put theory into practice. "There are theories about how to live well when you are dying," she argues,“We must begin to explore, develop and investigate interventions that allow patients to live well with advanced disease."