Women receiving combined cardiac and pregnancy care in Australia’s healthcare system felt dismissed by clinicians and out of place, prompting a call for improved person-centred care in healthcare systems.
A qualitative study of the experiences of 25 pregnant women who also had rare or life-threatening cardiac disease, published in Health Expectations, found a “discrepancy between care aspirations and experiences”.
“The participants had a wide range of cardiac diseases and timing of diagnoses, but had similar healthcare experiences of being dismissed, not receiving the information they required, lack of continuity of care and clinical guidelines and of feeling out of place within a healthcare system that did not accommodate their combined needs as a mother and a cardiac patient,” the paper said.
The research categorised the women’s experiences into five broad areas, that they struggled to be heard, felt they received inadequate information, perceived their healthcare professionals to be “winging it”, felt their care was fragmented, and that they were fitting into existing services.
“The experience of feeling dismissed by [healthcare professionals] HCPs was the most dominant individual theme in this analysis,” the study said.
“Women’s symptoms were most commonly attributed to as having anxiety, regardless of whether this was shown or expressed by the woman. Further, when women were told that they had anxiety, no referral or intervention was suggested to support the women.”
The study gave many examples of instances where women’s cardiac symptoms were deemed to be related to their pregnancy, or being the carer of a newborn.
“To be honest, the way I was going, I think I could have just ended up dying in my bed and people would have still been saying ‘Oh, it’s just the baby’,” one woman said.
It cited the example of a woman who saw her general practitioner, then the emergency department, with chest and jaw pain and an odd heart rhythm. She said she was not examined. Later she was diagnosed with myocardial infarction and multiple pregnancy-associated spontaneous coronary artery dissections and had emergency bypass surgery.
Another had sought help for daily chest pain for a decade before being diagnosed. “The GPs, cardiologists, ER staff, were all basically saying I was just being hypersensitive and that it was in my mind,” she said.
Another woman presented to medical professionals with a racing heart, cold sweat, arching arm, tight chest and three positive troponins. The emergency department clinician determined all these were “false positives” as the young woman “didn’t fit a cardiac profile”.
Others were concerned about the lack of information available on their condition, or the way it was explained, or not explained, to them.
“The answers I was getting weren’t really based on research or on best guidelines or, experience… no-one could ever really give me real answers, and I felt a bit like that was just their gut feelings,” the woman said.
Conflicting or inadequate information sharing was also cited as a significant concern for women. Some had attempted to seek multiple views on their care, only ro have the advice overturned at the last minute.
“One woman consulted with her cardiologist, obstetrician, obstetric physician and the head of anaesthetics regarding birth, all of whom agreed that an epidural was safe,” the paper said.
“However, as she entered theatres she was met by a different anaesthetist who declined to administer an epidural due to ‘people with my heart condition having cardiac arrest’. As a result, she had to ‘On the spot decide if I was going to go under a general anaesthetic to have my first child, or possibly risk cardiac arrest’.”
Further, once the women were receiving cardiac care, there were complications about how to care for their newborns at the same time, or conflicting information about rehabilitation exercises.
The study advised noted instances of excellent person-centred care provided by individual healthcare professionals, but said more needed to be done to implement person-centred care within the healthcare structures.
“Women in our study variously felt that they were viewed as ‘all baby’ or ‘all heart’, but never as a whole person or mother,” the study said.
“They described that their needs both within and beyond the hospital setting were not recognised or responded to. They felt that they were seen as a diagnosis and not a person, and did not feel included in decision-making.”
The study was partially funded by the Heart Foundation, NSW CVRN Women and Heart Disease Grant.