Episode 35: Changing the conversation: 5 questions for patients and health professionals

Dr. Caroline West:

Hello and welcome. I'm Dr. Caroline West. As a consumer it's wise to be across the reason a test, procedure or treatment is recommended, but unless you have a decent conversation about this with your health provider that takes in your own personal circumstances, you may be missing out. So how do you as a consumer, step in with confidence when healthcare providers are often busy and the answers not always forthcoming? What can health professionals be doing better? Joining me on the podcast are consumer advocates, Ricky Spencer, and Deb Letica to share their stories, welcome.

Deb Letica:

Thank you.

Ricky Spencer:

Oh, thank you for having me here at your wonderful show, and it's great to be here.

Dr. Caroline West:

Fantastic. Can I start off by asking you, let's start with you Ricky, how would you prefer to be addressed during this podcast?

Ricky Spencer:

Thank you so much for asking me about my pronouns. My pronouns are they, them and her, and it's wonderful that you've taken that acknowledging of asking me about myself, because it's part of the process of authenticating myself with whoever I meet. And especially in healthcare settings, that allows a communication to take place that really does allow me to connect with whoever I'm with so that they understand my authentic self and pronouns for many of us in the transgender and non-binary world, allows us to affirm ourselves with our paperwork, that don't necessarily match up with our presentation. So, Medicare, doctor referral, blood tests that we might take to a clinic and may have our dead name, and there is no section at the moment that's been legislated that we have to have pronouns. So yes, it's a wonderful way of connecting and really does set up that relationship on a good stead from the beginning.

Dr. Caroline West:

Because as you say, I mean health professionals may think it's just a little thing, but for a lot of people it's incredibly important to get that right.

Ricky Spencer:

Oh, it's one thing that every time I go to see, whether it be a doctor or my physiotherapist or osteopath, I always hope that they will have that initial conversation. Nine out of 10 times, I initiate it, and then I might get a blank look from the receptionist, but it's my way of feeling safe and just affirming, yes, I am who I am today, this is me. And I hope it sends a message to other people around the clinic who may even be listening, that it's an important way of connecting, even if you're cisgendered, heterosexual, it reaffirms you, so I don't misgender you as well. It's a two-way communication that really does allow for a wonderful more connection between two human beings.

Dr. Caroline West:

And Deb, what about you? What pronouns would you like us to use during this podcast?

Deb Letica:

My friends call me Deb, and I like she, her. But I pick up on what Ricky's saying about language, but language is not just words, it's tone, body language, facial expressions. People have got to feel safe to engage with health professionals.

Dr. Caroline West:

Yes, well just to declare my own pronouns, she, they, her, is all good with me. In fact, I'd prefer you didn't use doctor and just called me Caroline. Thank you for sharing your thoughts there. Now both of you have very interesting stories in terms of your engagement with the healthcare system. And perhaps I could start off by asking you Deb, to tell us a little about yourself and your involvement in the healthcare system, because I understand that you have stepped into the caring role.

Deb Letica:

Thank you, Caroline. Thank you for the invitation to join you today, to share some of my experiences. Before I start, I wish to acknowledge the traditional custodians of the land on which I'm joining you from today, which is Perth WA, who are the Whadjuk people of the Noongar nation. And I pay my deepest respect to their elders, past, present and emerging. Yes, I never realized I was a carer, Caroline. It's not something I ever believed I would become at any point in my life. Without a doubt it has been one of the most challenging, emotional, and sometimes confronting experiences I could have ever dreamed possible.

However, it has perhaps given me the greatest of life's lessons, in that it doesn't always work out how you think it's going to work out. I became a carer for my Croatian mom-in-law, who is now a frail aged lady in her 90's, as well as my younger brother who suffered a birth injury which resulted in him having some learning disabilities. Stepping into the role takes a lot of courage, and sometimes blind faith. Some experiences with health professionals was very positive and supportive and sadly, some not so. That's why I'm motivated to become the carer that I do today.

Dr. Caroline West:

Fantastic. I guess that's given you a lot of insights and we'll certainly come back to perhaps you sharing more about your experiences. If I can just go to you Ricky, I understand that you are managing a few chronic conditions.

Ricky Spencer:

Yes, and my journey was sort of intertwined with having physical and mental health issues. I've had a lot of contact with different agencies over 20 to 30 years and then later in my life going through my gender affirmation and using other specialists in another scope to deal with hormone treatments, brain imaging, regulating my testosterone levels, so it's been a complex journey. As you mentioned, and as Deb's mentioned, that real trying to navigate all the systems and trying to make sense of what are my rights in terms of what medications do I take, what impact it's going to have on my body? Has led me to a deeper reflection on what are the core ways I can move forward to make sure that in my future and my later years, that I'm more in control of what I'm doing in terms of managing my health, so I have a better quality of life.

Dr. Caroline West:

In terms of preparing for an appointment, what sort of things have you found particularly useful?

Ricky Spencer:

Well, for myself, that's probably putting my teacher hat on, I follow the principles of Choosing Wisely, where I sit down, and I write myself a list. These are the questions I'm going to ask. Now, if it's my endocrinologist, I am going to ask to make sure what are my HRT levels? I have a condition with a tumor, my pituitary tumor, so I need to also see what my blood tests have revealed. Are there any elevation levels? I always make sure, whichever specialist I'm seeing, I make sure I tailor the critical questions that I need to ask, my dosage levels of medication, so that when anything that props up into that consultation process, whatever emotional outcomes there might be or something that I wasn't expecting I would be advised, at least I have a series of questions that if I'm not feeling well, I could at least pass over to the clinician and say, "Could you please address that for me so I don't forget?". And also, for some of us who have memory impairments, it does help us remember what we're going there, otherwise leaving the setting and then thinking, "Oh, I forgot to get my script. Oh, I forgot to ask what this will do. Oh, where do I get my blood test done?". It gives me a sense of control and ownership over my body.

Dr. Caroline West:

I'm a doctor, and even when I go to the doctor, I find it's helpful to have a list, because I get easily distracted and I find that sometimes I can leave the appointment and I go, "Good grief, I didn't ask about the main thing I was interested in." It's really interesting that you say that. Deb, does that resonate with you too?

Deb Letica:

Yes. Ricky, you put that so eloquently, spot on. The Choosing Wisely five questions I've found as well, and I really wish I had have found them earlier, it would've made it so much easier. But it focuses my brain on, I need to see my GP about a certain issue, what do I really need to know? It makes me realize that if I really am not sure about something and I think I need a bit of time to clarify things and have a really long conversation, then I'll book a double appointment. I think by using the Choosing Wisely questions, I've found that it balances up the playing field a little bit. And the doctors appreciate you using it because they know that you're coming in and you're prepared, and you're focused on your health, rather than not being really focused.

Then I don't go home and think I forgot this, that or the other, and worry that then I have to make another appointment, so it makes it much easier for me to have a conversation with my doctor. I think they should be everywhere. I think the Choosing Wisely flyers should be on every reception desk and practices everywhere should be Choosing Wisely for any practices, and encourage consumers to ask questions, and it's okay to do that.

Dr. Caroline West:

There'll be some people listening who are totally across what Choosing Wisely is, and some people will be quite new to the concept. If you had to summarize what was in those questions around Choosing Wisely, do you have your little wallet card there with the questions on it?

Deb Letica:

Yes, I have my little wallet card that is now firmly implanted in my purse, along with my loyalty cards for anything else I use. It's a really handy little reference. It is so empowering. Do you want to talk about the five questions?

Dr. Caroline West:

Yeah, why don't we just go through them because it's interesting to remind ourselves... Because I think it gives us a great template across the board for consumers and for healthcare professionals, to just remind ourselves what we really need to cover. The first one is, do I really need this test, treatment or procedure, and I guess that's the starting point in the conversation, isn't it, really?

Deb Letica:

Yeah.

Dr. Caroline West:

Yeah. And what are the risks? Are there simpler, safer options? What happens if I don't do anything? What are the costs? I know that often health practitioners are very time poor, they may race through something and people may not always have the confidence to speak up.

Ricky Spencer:

Caroline, if I might add, for some of us who are on a disability support pension so for me it's really a financial issue as well, because I need to know if I'm having any tests, I need to know what are the costs associated with having that test? As an example, when I have an MRI test, and I remember thinking luckily, I had those five questions, because I did go through that with my endocrinologist I remember, and my physician. I asked them, "Do I need to have this MRI?" And they said, "Yes, because your elevated blood levels, and if we don't, there is probably something that we need to check that's not quite right." Then of course my other fear was that, well, what are the risks? What if I don't do it? Because I wanted to have that opportunity to make that decision for myself. And then I'm thinking, okay, I'm going in this enclosed machine, is my brain going to be radiated? And it might sound silly to some people, but for me when I'm under that stressful situation, and I mentioned before that emotional state, I needed to hear that from these professionals that I'm going to be okay. I needed to know the risks because I needed to prepare myself emotionally for that procedure. When I had that card, and I was nervous, I was shaking, I was actually able to have something to logically give me a pathway of explicit questions that I could ask so, as what Deb mentioned, I don't go away and then think, oh my God, I should have asked that, or I should've asked that, and it'd be more stress. That was so important. And then knowing, are there any simpler, safer options, and obviously there wasn't, I had to do it. Then for me, most importantly, what are the costs? Because I count every single penny, and for some people who are listening might understand that for some of us getting to the provider costs us money, and then we think about, are there any out-of-pocket expenses? Because sometimes for Medicare, it requires us to pay a payment first and then we get something back. And for some of us, we don't have that affordability option, so I have to make sure I either borrow money or I save up my pennies before I have that test, so it's all that pre-planning. That's the one thing I would probably add to that list of Choosing Wisely that I've modified and adapted to suit my needs, is that I always put in, do I have enough funding? When do I get paid? So, when I'm booking my appointments, I align them with my pension days so that my booking doesn't stress me out further, that I don't have enough. That supports my way of navigating a difficult procedure, and it allows me then to be in a better frame of mind to take on whatever procedure's happening.

Dr. Caroline West:

Deb, do you find that practitioners tend to be receptive when you present them with the five questions?

Deb Letica:

Absolutely, absolutely. I had to get a new GP recently, and I wanted one closer to home that's easy for me to access. Because I've become involved with Choosing Wisely, I actually took... The first appointment I had was sort of like, I was double checking that the GP was on board with what the Choosing Wisely initiative is all about. I asked them about it, and we had a really deep conversation about, I want to be in control of my health, I want to understand it better. I want to be able to book appointment with my GP that allows me the time to get to know you. I want a relationship with one GP that I can build a confidence level with, and I know that you're going to be there when I need you. It was really empowering to know that that GP understood what Choosing Wisely was about and encouraged me to use the questions. So yes, absolutely. It levels the playing field out. I've used it all sorts of places, even with my physio, my dentist. I just wish I had have found it much earlier than I did, it would've been a different outcome to several appointments I had to endure.

Dr. Caroline West:

I think that's a really good expression, levels the playing field out, because I think that often consumers, patients, they feel that there's a power imbalance. That the healthcare provider knows their stuff, if they recommend something it must be in their best interest, there must be evidence behind it and I think that it's really important that there is shared decision making and that people get involved with understanding what's going on. And you're right, you do need time, don't you? In a consult?

Ricky Spencer:

And also, the option of cost, because sometimes the practitioner might just assume that you have the affordability to undertake that procedure. But then after when we're asking that question about the costs, they might think, "Oh, hang on a minute, I'll ring up and see if there's an other space somewhere that bulk bills that procedure. You may have to travel X amount of time to get there, are you prepared to travel?" Then it gives me that option that, for myself, I don't mind traveling because I have the time. I don't have limited time to get somewhere, I can make time for that. Because if I can save $50 or $60, that to me is a difference for my living costs. And perhaps a lot of people who might be listening, that's a question that they didn't think about asking, that it's okay to take that stigma, it's okay to talk about affordability when it comes to your health and accessing a service.

Dr. Caroline West:

I think that's really important to keep affordability at the front of your mind, because I think you're right. A lot of people think, oh you're on disability support pension or another pension, you're getting cheaper pharmaceuticals, for example. And it all adds up and a lot of creams and things like that are not even subsidized, and just getting from A to B and the cost of transport. I think also the cost, not just financially, but the cost of a medication in terms of side effects, that if you don't really tease that out, and if I as a practitioner don't really listen, there may be things that are really important to you. I mean, if I think about, you, I think disclosed before Ricky, that you'd had mental health problems. But there are some medications that have some pretty unwelcome side effects.

Ricky Spencer:

Oh yes Caroline, there was one medication that I was on for over eight years. When I was first put on that medication, I was very unwell, so I was hospitalized at the time, so I had very little understanding of the long-term side effects of the medication. Because remember, for some of us, when you're in an unwell state and you're medicated or sedated, I should say, you're very much at the mercy of the practitioners and the support around you, to keep you well and the problem is they give you a lot of verbal information, but there's nothing written down at that space so that you're in this daze. And what I've found for myself, it becomes habit forming, so I just take the tablet. Then when I would go to my practitioner - this is going back a couple years ago, as an outpatient, I would say, "I'm not feeling well," and then one of the medications I was on that I wasn't advised that it would cause me to overeat, and binge eat. Now this impacted my health because my weight has now doubled, doubled and a half. I was at one stage, when I first became ill, I was say like 85 kilos and I went up to about 145 kilos in a couple of years. That then had an adverse effect on my health, and I remember saying to, at the time my previous practitioner and psychiatrist, "I don't feel well. I keep vomiting in my sleep," because it was that sedative, the tablets I was on. I remember the thing that stood to me and made me upset was I was told, "Ricky, you are a patient. We're doing what's best for you. Don't worry about it, just go back, go home, just go to sleep." And basically, it was like, "Go home, go to sleep and just wait to die for the next 20, 30 years." And I thought to myself after a while, no, I want to live. I want to have some quality of life. So I then changed practitioners, and for me being a transgender person and my previous doctor wasn't able to support me in that because they thought that was just part of my mental health. I don't know if that's all psychosis or some delusional thinking, I went to, for me it was an LGBTIQ medical service who affirmed me, and within a couple of visitations, I was sent through to the appropriate support and I felt so affirmed. And they helped me come off that medication. But I drove that journey. I explained that, "Look, I don't want to be on a thousand milligrams a day." So we worked out a plan together that suited me, that I reduced it every week, and I would go in and say, "Yes I've done this and done this." To the point where I came off it and I wasn't sick, and I feel so alive. And although I've been off it now for a year and a half, I still have the effects of it on my body. But you know what? I am so grateful and I'm so proud of myself that I took those steps. A part of it was in fact being involved with the consumer health information and then Choosing Wisely where I looked, hang on a minute, I have some rights. I can say, "No, I don't like these side effects. Can I come off this medication? What is an alternative medication that will allow me to control my eating and help me manage my health better?" It's really taking control and not being frightened to say to someone in authority, "Look, I don't feel that this medication is working well with my body, can we try something else, please?"

Dr. Caroline West:

I hear that all the time from patients, especially around weight gain that's associated with some of the medications used in mental health. The other one that I hear a bit about, which I think is often not talked about enough, is sexual dysfunction off the back of some of the medications. Particularly the antidepressant class and others where it can affect sexual function. And if people are not stepping in and asking the questions of their practitioner, they may not be aware that that's the cost of some of these medications in terms of side effects, and that's a whole other area.

Ricky Spencer:

I think for some of us who are gender non-conforming or from the LGBTIQ community, my previous doctor who worked in a very middle classed heteronormative suburb, or cisgendered would never ask me that question, nor did psychiatrists when I was hospitalized years ago. It's almost as though they were too afraid to even ask that type of question to someone who identified as queer, because they themselves were not comfortable. Because perhaps in their lens that they thought, well, this persons not married, so they don't have to worry about having a sexual relationship. It doesn't matter, it's not important to them. And even, I guess for a single person, I should say it's important. We all are sexual beings, and we have a right to be able to feel pleasure and have that, but we need that opportunity, we need to have that choice. And wellbeing isn't just eating and sleeping, it's also sexual health and functioning, and I think that should be something that, as consumers, we're not afraid to ask that question. If the doctor or practitioner is uncomfortable, then perhaps it's them that they need to work through, not us.

Dr. Caroline West:

Exactly. Deb, from your perspective, what's it like being an advocate as a carer? Because you've probably sat there advocating on behalf of your brother or your mother-in-law. What's your impression of what that's like and how these Choosing Wisely questions can be of value?

Deb Letica:

Choosing Wisely questions, to my absolute delight, were available in different languages, and Croatian is one of them. I think if we're talking about empowering consumers and carers from culturally linguistically and diverse groups, they are the go-to, to enable people. There's no barrier to people to use them, they're available in different languages, which is really helpful for people to understand that it is okay to ask questions. But also, if a person is just sitting there and nodding their head and saying, "Yes, yes, yes." they'll go home, and if they're not comfortable with something because they feel like they've been dismissed, which is what Ricky was talking about, they won't follow the advice that the doctor's just given them. They'll go home and they'll just go back to what they're doing because it won't fit into their life or they're worried about something, and the questions weren't answered. If you're going to talk about shared decision making and informed consent, it is vital for a consumer to feel safe in their environment, to ask questions and engage with any health care professional. That's just a basic right of human beings to feel safe enough to ask questions, and that doesn't always happen as well as it should.

Dr. Caroline West:

Yeah. I'm hoping that Choosing Wisely is genuinely creating a cultural shift here amongst consumers and also health professionals, so that we can have these frank conversations around whether a test procedure is actually required and what the evidence is. And particularly when you're dealing with vulnerable groups who are perhaps in an aged care facility, those who are living with dementia, who perhaps have lessening ability to fully understand the entire scope of what's being presented, I think that it's great to have that framework to help us in these areas.

Ricky Spencer:

Also having a conversation with your loved ones or carers and friends to say, "Look, this is what's working for me." I know in my advocacy, working in trans health and working with young people especially, it's something that I encourage teachers to use in schools as a good platform for young people to then show their parents because they can learn from each other, "Look, mom, dad, these are the great steps you can take to make sure that every time you see a practitioner, these are the questions that will help our health be better." Even for kids with disabilities, carers and parents who are struggling sometimes with going to medical appointment to medical appointment, it gives you a sense of control when sometimes procedures become so compounded by one process to another, that you can think sometimes, step back a bit and say to the physician, "Hang on a minute, can we go through a couple of things please?" And go about how much will this cost? What are the side effects? Other alternatives? It helps you frame that and takes you away from the emotional, overwhelming space to a more centered place where then you can then have something tangible that when you walk away, you think, oh okay, I'm going to do this, so when I get home, I'm more likely to, or the child or my partner or my lover may have a reaction of vomiting, so I'll prepare for it. It gives us a sense of preparation of what to expect from a procedure or a change in medication, that's going to result.

Dr. Caroline West:

I guess with people listening who are keen to know more about Choosing Wisely, you can go to the choosingwisely.org.au website and there's plenty of resources there for consumers and health professionals to check out. I think it's really useful. I know that we've talked today, Ricky and Deb, about shared decision making and the sense that consumers get more involved and more empowered in terms of stepping forward and becoming part of the conversation. So we talk about it, is it actually happening do you think? Ricky?

Ricky Spencer:

Oh boy, I don't know. Look, I think in some spaces it is, but my concern is for people, I guess, and I can only speak from my own lived experience, or groups that I run within the trans and gender diverse community, that there is still a lot of hesitation and limited understanding of our choices, our bodies. And to dealing with the stigma of coming into a position of I need treatment, I need support, I need you to see me as who I am, not what the card on the Medicare card or the referral sheet is presenting. Ask us the questions, and we need to take that journey. But medical practitioners need to understand that for some of us it's a learning... Help us to help you to help us... I can't remember how it goes, but it's something like, help us become more... What's the word for it? Informed patients, who can then say, "Yes doctor, this is what I need, but I'm really worried about my weight or I'm really worried about my sexual functioning. Will this impact me on this way or that way?" But it also starts again, Caroline, from the first minute of your reception staff. Having that welcoming, affirming space to come in and really welcome us, that we know everyone is time poor, in terms you've got 10 minutes, but let's make that 10 minutes our time to connect and not rushing us through, and really affirming us. I would love to see every center have some sort of signage and even a little card that people can take into the consulting room to help guide us. I could see that as a wonderful way that reception staff could get to know the new patient or an existing, to say, "Hey, we've got this new system to help better your time with the doctor, or the physiotherapist, or whatever practitioner, to really have your needs met. Have a look at this. This can help guide you your questioning for today, and let us know what you think." If we can all be part of that journey of education, and then the better outcomes for everybody. Because then the doctor knows exactly what the person is feeling, what their needs are. The person feels that they've been listened to, they're going to feel better and a better position to understand what's happening to them and take ownership of whatever the information is in front of them. They can walk away and at least think, ah, this is what's going to happen. Then next time they come in, it becomes just a general part of the process of coming in and not spending the perhaps 10 minutes, so, fumbling around to ask, "Okay, I'm doing this." Having those questions really maximizes your time with your medical practitioner.

Dr. Caroline

I think that's a really good point too Ricky, about having a welcoming space. If we look at commercial centers, like look at a shopping center, they spend a lot of time and money thinking about the foyer. That greeting, that sense of people feeling, oh, I'm pleased to be here, is incredibly important. If we translate that to the consumer experience in health, how you're greeted, how you're introduced, how you're included as soon as you arrive, makes a colossal difference to your engagement. I'm not suggesting we become like shopping centers, but what I'm saying is that it's in the design of the experience, and we need to learn about designing an experience that's inclusive and engaging, don't we?

Ricky Spencer:

Caroline, we also need to talk about the architecture. Hello, I'm a bigger woman, I need a chair that I can fit into. If we can have the chairs a bit bigger, more accommodating, not these little plastic things that are so uncomfortable for some of us who have back injuries, make them a little bit more comfortable and allow people who have wheelchairs to navigate, create a sense of feeling safe and comfort. Because if you create a little bit of comfort, it's going to alleviate a little bit of our anxiety. Because sometimes the spacing and the toilets. Having toilets which are clean, which smell nice, make sure that toilet paper is always supplied after every person who use, these are little things that will really make a difference. And for us, we do remember because we're always looking around. Sorry to butt in, but that was one of my biggest things that I always look at. Am I going to fit into the seat? Is there enough seating for me? Will I be able to get off the chair? Is a toilet accessible?

Dr. Caroline West:

Fantastic. And Deb, from your perspective, is something like a card or something like that at the front desk going to be of use to help guide the questions? What are your takeaways?

Deb Letica:

The biggest gift you can give someone, is knowledge. If you empower people with knowledge, it's a gift that's going to last a lifetime. Those flyers should be on every reception desk, it should be the first thing I see when I walk in there. And Ricky's right, it is an experience, right from the time that you check in or arrive at your appointment, to the time that you leave. It needs to be welcoming and reassuring and it's a win-win situation for both the healthcare professional and consumers and carers. We've got to see the humanity in each other and the kindness. Small random acts of kindness do amazing, amazing things to increase the engagement and people feeling comfortable. Especially with baby boomers or people from different backgrounds and different cultural beliefs, it just levels a playing field and it's a win-win, and it's much more pleasant for everybody.

Dr. Caroline West:

And far more pleasant for health professionals to work in, so it's more pleasant for everyone all around. And that sense of sharing the kindness too, I think is really important. Having kind interactions that are respectful, and I think from our end of things as health professionals, we need to be listening more. I think you've both shared your stories so well on that, and hopefully there are a lot of things that people can take away from this podcast and reflect upon. I really appreciate both of you spending your time with us today, and that's all we have time for, sadly. But if you'd like any more information or access to any resources, go to the homepage of NPS MedicineWise. If you're a healthcare professional, you can also check our website for access to CPD points. I'm Dr. Caroline West. I look forward to you joining us next time, bye for now.