Advice for Healthcare Providers
Women living with heart failure (HF) offered health professionals the following advice, based on their experiences. Women want providers to take more time to listen and treat their symptoms seriously. Providers would benefit from increased awareness and training on the reality that heart disease and failure present differently in women and that diagnostic testing and treatment options might differ from that for men.
They want providers to communicate and provide information in ways that are easily understood, using plain but sensitive language. Women spoke about the importance of appreciating the emotional impact of a heart failure diagnosis and the need to offer support, compassion, respect and empathy to women and their families. They advocated for more research about heart disease and heart failure in women.
Listen to Our Symptoms
Many of the women with HF that we spoke to felt ‘ignored’, ‘dismissed’, ‘bypassed’ or ‘brushed aside’ by busy doctors who often attributed their symptoms or complaints to being female or to anxiety or other mental health causes. Lori describes being told that her heart symptoms were linked to menstruation and menopause rather than being properly investigated; she requested that providers:
“Treat us like you want to be treated because if you came into the hospital complaining of signs and symptoms and you, as a doctor are like “well those aren’t typical signs or symptoms” or whatever and [they are] just like “oh you know, maybe your period is coming on or maybe your – you know, going through womanly changes” without even considering heart issues, makes women feel even worse and is inadequate care.”
Barbara says attributing complaints strictly due to anxiety is not respectful.
Transcript
I think doctors need to start listening. They need to start taking things, especially women’s diseases a little more seriously. The days of being – of having anxiety and ending up in the hospital are over. The reason why we have anxiety – there is a reason why we have […]
Women experienced health care providers who were not attentive to their symptoms across their HF journey – whether presenting to a family doctor for the first time, or much later, already having a heart failure diagnosis and seeing a cardiologist or attending an emergency department.
Lynda specifically calls out family doctors for attributing symptoms to mental health causes without doing adequate investigation.
Transcript
You need to be aware. I mean most of the nurses were excellent. I never really had a problem with nurses. In fact, a lot of them went, “Yeah, I hear ya.” Like they’ve experienced things like that. So, never any problem, but with doctors, yes. Family doctors more than […]
For many of the women interviewed, ‘being taken seriously’ meant that doctors took time to listen to them and respected that they knew their own bodies and when things were not feeling okay. Ginette describes sensing that she was having a heart attack but a provider assumed she was experiencing indigestion.
Ginette describes being treated with skepticism and 'laughed at' by providers in the emergency when having a heart attack.
Transcript
This bothers me and makes me so upset but when I went into the hospital six years ago telling them, “I know it’s me, I know I have a heart attack and you’ve got to –” and they thought oh what a bitch. But it wasn’t that, I was a […]
Treating women seriously also means practising “due diligence” by ordering routine diagnostic tests such as EKGs and echocardiograms to investigate symptoms, regardless of whether they go to their family doctor or to the emergency department of a hospital.
Lori describes the need for due diligence on the part of a healthcare provider.
Transcript
I would say treat us like you would want to be treated. Take them seriously because they’re not there to waste your time. Maybe one out of 99 are, but they’re not there to waste your time. They’re there for a reason. If it’s the family doctor send them for […]
Be Aware of Sex and Gender Differences
The priority for more research and training for health care providers about heart disease and heart failure in women was noted by several women. Anne1 states “ – women present with much different symptoms than men do, so I guess there needs to be a lot more research on women living with heart [failure], or women’s heart disease, period.” Physicians need to be more aware of the differences in how heart failure presents in women and tailor their approaches to diagnosis and treatment, keeping up-to-date with new advances.
Jennifer advocates for more research into heart disease in women.
Transcript
I believe, and unfortunately, the research backs me up on this is that women’s hearts are different from men’s, and we need more research into treatments that might be the best for women. And we need our healthcare professionals to learn more about the symptoms and presentation of heart disease […]
Ginette encourages healthcare providers to keep educating themselves.
Transcript
I think the most important advice would be is that everything changes so much every day. What my mom lived through has absolutely nothing to do with what I live through now. So I would say keep on educating yourself, yearly. Every year you should have refresher course on medicine, […]
Communicate in Understandable Ways
How health care providers communicate with patients was commented on frequently by women we spoke to. Providers need to use clear, plain language when explaining diagnosis, care and treatment plans. Women recommended considering the level and knowledge of the woman in front of the health care provider and to avoid making assumptions. Susan1 is a former nurse who explains that even though she was a health professional, she is not an expert in cardiology and heart failure.
Susan1 says speak at our level.
Transcript
Because I think when healthcare professionals are talking to a patient who’s also in healthcare there’s an assumption that this patient knows everything. But there’s also for the patient a healthy sense of denial. And so sometimes you’re just a little bit too close. You don’t want to, you know, […]
Susan2 details her experience with 'doctor-speak'.
Transcript
Earlier on when I did not understand a lot of the vocabulary, my thought would have been to … do not use hospital-speak or doctor-speak. Sometimes they would tell you what’s going on but it was over your head. So until I understood more about my disease and what we’re […]
Health professionals need to be aware of the vulnerability of women and need for hope when they first learn of their heart failure diagnosis and be sensitive to wording of the news. Lillian describes the need to be more “hope-lifting” than “hope-dashing” in the choice of what doctors share with patients.
Address Informational Needs
Women highlighted the need for information provided at the level they were at and adjusted for their own individual circumstances. For example, if they lived on their own, they might need more practical support on coping with daily tasks and income implications. Some want information about what they will face and how to life with heart failure.
Lillian encourages extra support for people living on their own.
Transcript
People who are isolated like maybe pay a little more attention to, do they have the supports that they need? So someone who’s single or someone living alone, or that kind of thing, do they really have the practical and other supports. The other the other thing that I’m fortunate […]
Debbie prefers 'bottom line' guidance, even if it takes some time to accept.
Transcript
And sometimes they need advice, they need guidance. Sometimes people like me need guidance. You know someone who could help educate us more. You know to make us not be afraid of something, but to know what it is about. Don’t be afraid to tell them the bottom line. Because […]
Health professionals may need to examine how relevant the information being provided to young women in cardiac rehab programs is. Jennifer felt it was too geared toward older people. The program materials, goals and objectives were focused on the needs of older men, disregarding the impact HD might have on younger women.
Jennifer felt cardiac rehab was geared for older people.
Transcript
One was the fact that I was 43 when my heart disease was discovered, I felt like the majority of ,for instance, cardiac rehab was geared for older people. And I believed that the doctors and nurses, they were used to dealing with older people than myself. And I felt […]
Address Emotional and Mental Health Needs
The experience of being given a heart failure diagnosis is very difficult and traumatic for many women. Lillian says it is like “blowing someone’s life apart” but was not aware of any support. She advises health care providers give greater care and support for the emotional and mental health impacts of a heart failure diagnosis.
Lillian speaks about the trauma of a heart failure diagnosis.
Transcript
Well, some recognition of how traumatic that is. If I didn’t have the resilience and the resources that I have, if I didn’t have my therapist, I would have fallen apart. Nobody would have been checking on how I was doing. Nobody. I could have called somebody. At that point, […]
Respect, Empower, and Involve Women
Many women wanted to be recognized and respected by providers as ‘experts’ of their own bodies. They know when something feels different or ‘not right’ and can bring valuable information to aid provider efforts to diagnose or/and plan care. Respecting women as an important source of information by listening to their symptoms or concerns, empowers women to become even more knowledgeable and involved in their own care and management. Sharon2 says how grateful she is to have a doctor who empowers her to be an expert in her own care, “where my doctor is concerned, she appreciates what experience, what things I bring to the table and understand and manage my own illness”.
Lise knows her body better than anyone.
Transcript
And eventually they actually – they have learned to listen to me. Because on the best advice the doctor actually game me one time, is I know my body better than anyone. So if I’m going in there and saying may fatigue is massive – then my fatigue is massive.
Tara speaks to the desire to share information and collaborate with healthcare providers.
Transcript
I spent four or five hours in an MRI machine and I wanted to know the results. And when I came out, they were like, well, it’s just what we thought. I’m like, what were you thinking. I was like desperate for information. So, when you have a test, I […]
Offer Empathy and Compassion
Advice from several women for health professionals included being more compassionate, such as Debbie who said “be compassionate, empathetic, sympathetic and to realize you’re not that person, so you don’t know what they are going through”. Cathy described health care providers as “angels “who have a true calling. Part of that caring, she suggested, is the ability to spend a moment being with a patient and treating them like a person.
Tara describes how a nurse sitting with her was 'life altering'.
Transcript
I mean, coming from where I came from and my like being a nurse, it’s easy to get caught up into seeing somebody as the diagnosis instead of the person. And I remember having a nurse at like 2:00 in the morning, like sit with me. And so that was […]
Extending care and compassion to caregivers and family members, who are also navigating a complex health care journey, was suggested. Simple gestures like acknowledging them and making eye contact builds trust in the provider.
Naomi describes how simple gestures make patients and families feel cared about.
Transcript
Be kind to your patients and treat them like people – people, not just you know – the next person with an issue, or you know the next patient. When they genuinely care about you, you can totally tell. Like patients can tell. I don’t know if they realize but […]
Amanda advises health professionals to check in with the family and caregivers.
Transcript
On advice for the health care professionals – is to kind of involve the family, the immediate caregivers as much as possible and ask them how they’re doing too. Do they have heart failure themselves? No but they’re going through the emotional aspect of health failure diagnosis just as much […]