Heart transplants save lives. But what happens after the surgery, when the person has received their new heart? Matilda Almgren’s studies show how uncertainty is a significant concept for the patient: Will I get better? Or even survive? Why do I feel this way, now that my new life was supposed to start? “This may require a softer and more sympathetic form of care”, says Matilda Almgren, PhD student and intensive care unit (ICU) nurse.
In her thesis, she focused on understanding what it is like to be a heart recipient and how to cope with life after a transplant. She interviewed 14 people in depth one year after undergoing the vital intervention of heart transplant surgery. In all of the patients, the uncertainties had quickly emerged – and spilt over into all areas of life.
“How you tackle life after a heart transplant depends a lot on how you feel afterwards. The surgery doesn’t restore you to full health, in fact, you are faced with a chronic condition that requires lifelong medication. Feeling uncertain can be a good thing – you don’t know what will happen and this in itself can instil hope. But uncertainty can also generate enormous stress. A patient who experiences several incomprehensible symptoms such as nausea, fatigue and more…may feel weighed down by this uncertainty: ‘Is this what my life will be like? I thought I would be feeling good!’.”
Matilda Almgren stresses that healthcare providers should adopt a broader approach and include new perspectives. Healthcare looks at heart transplants as the life-saving interventions that they are. As a definitive solution to a life-threatening problem. This is the message usually communicated to the patient, and not the one about a life often surrounded by new, although less acute, complications. In addition, healthcare professionals want to see a good result of the treatment. Thus, a lot of focus is placed on the purely medical. If the test results look good and the body as a whole responds well to the new organ, the more emotional concerns fall to the wayside even though they often have a strong impact on the patient.
“We need to pick up on how the patients are actually feeling, with all the stress and uncertainty that come from having undergone a transplant. We should assume that all patients feel this uncertainty, address their questions and try to answer and explain them as best we can.”
This line of thinking fits well with the person-centric form of care which is currently implemented in Swedish healthcare. Matilda Almgren further believes that turning thought into action requires structural measures. Time needs to be allocated for the healthcare professionals’ own reflection and for follow-up and conversations with the patients.
“That way, we can help relieve them of their uncertainty.”