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For some, it is important to live one more month to attend their grandchild's confirmation, despite the side effects the treatment may cause. For others, it is most important to spend the last time without pain and with as few hospital visits as possible.
However, it is far from all patients who have the opportunity to consider what is important, in time.
Many patients with blood, lymph, and bone marrow cancer receive intensive cancer treatment all the way to the end of life. This means they experience the side effects of treatment but without benefiting from it. This often happens without them having had the chance to talk to a healthcare professional about what is most important for them to prioritize if their disease worsens," says Cæcilie Borregaard Myrhøj, who is a clinical nurse specialist and a Ph.D. student at the Department of Hematology.
She explains that concerns and uncertainty about the future generally occupy a lot of space for both patients and their relatives, as these types of cancers can have more unpredictable disease courses than others.
Together with departments treating blood, lymph, and bone marrow cancer in Roskilde, Odense, Vejle, Esbjerg, Aarhus, Gødstrup, and Aalborg, Cæcilie Borregaard Myrhøj is researching whether a structured conversation between the patient, relatives, and healthcare personnel can help improve the quality of care and treatment during the final phase of life across the country.
How far should we go?
The study is a randomized study and also Cæcilie Borregaard Myrhøj's Ph.D. project. It is based on the conversation concept “Conversations about Life and Treatment," of which she is one of the creators. The concept was developed to assist patients, relatives, and healthcare professionals in clarifying what is most important for the individual during a serious illness. For example, healthcare professionals are guided to ask patients:
Have you thought about how much you are willing to go through to possibly extend your life?
This can be a difficult question to both ask and answer, but it gives patients the opportunity to make decisions that can impact their quality of life in the final period, explains Cæcilie Borregaard Myrhøj.
For other groups of cancer patients, early conversations focusing on the patient's goals, values, and preferences have been associated with better quality in the final phase of life and fewer symptoms of anxiety and depression," says Cæcilie Borregaard Myrhøj.
We need to use resources where it makes sense
Her research from the Department of Hematology suggests that these conversations can also be beneficial in helping patients with blood, lymph, and bone marrow cancer to consider what is important to them.
At the department, she has led a study involving 311 patients who died between 2020 and 2022. Before they passed away, 20 percent participated in a structured conversation about their values, life situation, and wishes for the final period. The patients who had participated in a conversation were twice as likely to receive specialized palliative care and 80 percent less likely to receive intensive cancer treatment in the last month before their death compared to the patients who had not had a conversation.
Cæcilie Borregaard Myrhøj looks forward to the seven departments in other hospitals systematically trying out the concept and hopes that the experiences will benefit patients, but also the healthcare system in general.
“Our experiences at Rigshospitalet suggest that the conversations not only help patients and their families prepare better for the final period, but they also immediately lead to less aggressive and unnecessary treatment and more supportive and palliative care in the final time. This means that with a relatively small effort earlier in the disease process, we can create better outcomes for patients while using the healthcare system's resources more strategically, benefiting both the patient and the entire healthcare system," says Cæcilie Borregaard Myrhøj.