Think:Health cultivates and articulates the best in health research and news.
The following episode, which aired on Sunday 25 September 2016, features:
- discussion around how nurses can influence government policy (01:16);
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the ethics of committing individuals suffering from anorexia to hospital involuntarily (10:40); and
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what National Stay in Bed Day means for 120,000 Australians with Mitochondrial disease (20:07).
Academic guests:
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Dr Frances Hughes - CEO of the International Council of Nurses & UTS Faculty of Health alumni award winner
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Dr Sacha Kendall Jamieson - Researcher at the UTS Faculty of Health
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Sean Murray - CEO of the Australian Mitochondrial Disease Foundation
Host/s:
- Ellen Leabeater, 2ser
- Ninah Kopel, 2ser
- Sam King, 2ser
START OF TRANSCRIPT
Ellen: Hi, welcome to Think Health. Ellen Leabeater with you. Today, should individuals suffering from anorexia be committed to hospital involuntarily?
Sacha: It is possible to come to a decision sometimes that the quality of life of this person isn't going to be improved by involuntary treatment, and it might be determined that that person shouldn't be forced to stay in hospital and receive treatment against their will.
Ellen: It's National Stay in Bed Day, but what if you struggle to get out of bed? We explain the ins and outs of mitochondrial disease.
First on the program, with health budgets across the globe exploding, nurses are emerging as one of the best ways to keep costs down. In hospitals, for example, studies have shown that for every 10% in the number of nurses with a bachelor's degree, patient mortality is reduced by 7%. Yet when health budgets are slashed, nurses are often the first to go.
Dr Frances Hughes has recently been appointed chief executive officer for the International Council of Nurses. She has previously held senior leadership positions with the World Health Organisation and, most recently, as chief nursing and midwifery officer for the Queensland Department of Health. Dr Hughes joined Think Health to discuss how nurses can influence government policy and how they can reduce the budget bottom line.
Frances: Nursing has produced phenomenal leaders. We have a lot of our education is around strengthening leadership, so I would say there's millions of nurse leaders across the globe. The issue is, can they make the impact and influence the way they are designed to? That's the issue. We need to make sure that they can impact on their governments and policy decisions that affect health of consumers in their countries.
Ellen: You were the chief nurse and midwifery officer for Queensland Health. What did you do in that role?
Frances: I was the department's, I suppose, authority on nursing and midwifery for the state. It's not that I controlled the nurses in the state, because I didn't, but I was there to ensure that the government policy was operationalised and that nurses were well-informed and understood and contributed, and also that nursing issues and the contribution of nursing was understood at the policy level. I showed evidence of nursing. I profiled what nurses were doing. I ensured I had good data and information. When there was arguments about whether they should cut nursing, I produced evidence about how foolish that can be for outcomes of consumers, how it's not effective to slash and burn nursing. I had to do that in an evidence-based approach. You can't be emotional about this stuff, because it's often economic arguments coming down from Treasury or Finance people.
Ellen: Where does this idea come from, that it is good to slash and burn nursing?
Frances: It's because we're the largest item in salaries on the spreadsheets in any hospital health system. We are. Sometimes, it's the low-hanging fruit to people that don't know any different. They say the easiest things to cut is wages and salaries, so we'll either dumb down nursing or bring in cheaper people to do the same job. That's just foolish. We have enough research around the world, with 40 to 50 countries, where if you start reducing the role of the RN and replacing them with less-skilled workers, you have a blowout of quality. Actually, you can kill patients. The registered nurse, the amount of clients and patients that they have, if you increase the numbers that they have, the mortality goes up by 7%. We know that's how we get the nurse ratio argument. There's enough evidence around that through large data sets of information.
Ellen: Do you think governments listen to evidence?
Frances: Politicians do what they need to do to stay elected. That's what they're there for doing. You do get alignment at times, where you get absolute alignment that they will put the belief about what they should be doing for the public who voted in, and good government strategies, good public policy, and they can do fantastic things. At times, they turn over very quickly. Politicians turn over, and they just get caught up in the politics rather than the policy. They should be concentrating more on the policy, because you can't turn on and off healthcare. You can't turn on and off nursing.
Ellen: Healthcare's one of those interesting things. If you're a politician, it's highly unlikely that you've never stepped foot in a hospital. Whenever you do go to hospital, it is the nurses that you see.
Frances: I know, but the issue is, most of the time, it's organised medicine that they listen to.
Ellen: What's organised medicine?
Frances: The AMAs of this world.
Ellen: Australian Medical Association.
Frances: Yeah. They listen to them, and they're not actually seeing the full picture of healthcare. Nurses are not doctors' servants. They haven't been for centuries. We are legitimate, well-educated, highly professional beings functioning with or without medicine around us. We are naturally good team players, and we work well in MDTs.
Ellen: What's MDTs?
Frances: Multi-disciplinary teams, with others like physios and allied health and things. It comes a time when we cannot continue with the expenditure that's occurring at the moment in healthcare. No countries can afford it. Consumers can't afford the co-payments. They can't afford the private medical. We have to be able to do things differently. We have to stop people going to hospital that don't need to go to hospital. We've got to maximize the role of all practitioners to their full license, and nursing is the biggest one. We need to allow nurses to do what they were educated and trained to do, and that would help a great deal to keep people out of hospital, to allow people to have a better experience in hospital, and actually reduced adverse events and death.
Ellen: Do you see the scope of nursing widening over the next decade?
Frances: Nursing will go wherever the consumers are going. Nursing is totally the partnership role and responsibility of the nurse is to have a partnership responsibility with the consumer or patient. As consumers start to get more literate in health, start to have different technologies around them, there's absolute big changes. I've been in the U.S. and spent 3 days with retail health clinics. These are nurses who are functioning in Walmarts and shopping and big supermarkets. They are doing amazing things.
Some of those consumers may never go near a hospital or what we may see as traditional practices. They're doing an amazing job. That's what's the most important. We've got chronic disease staring us down the barrel of diabetes, and these illnesses are going to suck up all our resources in the system. We have to manage them better. We have to work with consumers differently, and nurses are key to that.
Ellen: In that American example, you go into Walmart, you're grabbing some bananas and toiletries, and you go to see the nurse?
Frances: Yeah, it's a nurse-practitioner. These are the advanced nurses. They do assessments, they prescribe, they have time with consumers. It's called convenient care. They're not the medical home of the consumers, but they are there for consumers that need them. That's what we have to get real about it. We can't keep provider-driven services, i.e. consumers can't always fit around when we want to look after them and when we want to treat them and our opening hours. What the retail health has done is flipped that over. They're open from 8 in the morning to 10:00 at night. You can go in there, you can have your screening done, you can have your check with the nurse-practitioner, you can have a great deal of treatments done, and it's convenient.
Ellen: This convenient care, that would drive down the cost of healthcare?
Frances: Huge. The data that came out of those sessions was absolutely amazing. Of course, private insurers now are reimbursing clients who go to those nurses. That's always the big issue. It's not that nurses can't do the work, and it's not that we're not educated to do the work, but usually people don't want to pay for it because organised medicine usually stops nurses getting reimbursed for getting the same services they do. That's anti-competitive, but that's now been broken by this issue with the convenient care. Walmarts and this big mass of industries, they went and fought for it, and so now the insurance industries and payers in the U.S. now pay the nurse-practitioner for the same service as they would if they had it elsewhere.
Ellen: Dr Frances Hughes, chief executive officer for the International Council of Nurses and a UTS alumni award-winner in the Faculty of Health. You're listening to Think Health on 2SER 107.3, online at 2ser.com or on your favourite podcast app.
Anorexia nervosa is one of the only types of mental illness you can't hide. Many of us will have sympathised with a sufferer as they've walked past us in the community. Recovery is possible, but different treatment options work for different people. In severe cases, one treatment option is involuntary admission into hospital. Dr Sacha Kendall Jamieson is a researcher in the UTS Faculty of Health. She has devoted her PhD to questioning the ethics of this decision. Dr Kendall spoke to Sam King.
Sacha: It's essentially defined by 3 main characteristics. A significant restriction of energy intake that leads to dramatic weight loss. Secondly, an intense fear around gaining weight, even when your weight might be significantly low. The third factor that would be involved in a diagnosis of anorexia nervosa is experience of one's body shape or a disturbance in the way one's body weight and shape is perceived and experienced.
Sam: It's such a striking mental illness. You see these pictures of people that have gone right to the edge. I've heard before that they don't really see themselves going in that direction until it's too late. Is that the case?
Sacha: I think it varies. I think for many of us, we might be able to perhaps recall a memory of someone who we could see in our community who always wore black clothes. You could see them walking around the community. I think just last year there was a case of a woman who was known as the walking woman in the Northern Territory of Australia, who very sadly died from the illness.
Sam: Why was she known as the walking woman?
Sacha: She just walked all the time around her community. I think it is a striking illness. Visually, it is striking, and can be quite distressing to see somebody in that state of unwell-ness, where you can see somebody persisting with something that from your own point of view is clearly very harmful.
People with anorexia nervosa, their degree of insight into their illness really varies quite a lot. The typical age onset of someone with anorexia nervosa is quite young, and most people recover from the illness while still young, in their adolescent years. I suppose the longer somebody has the illness, the more complicated their insight into the illness can be, because of long-term effects on the brain from starvation.
Sam: The more intensive the treatment program as well, I assume.
Sacha: Yes and no. There's more evidence for treatment success when a person hasn't been unwell for too long. What you often see is a much more active approach to treatment when clinicians are working with adolescents or with people who haven't experienced the illness or been diagnosed with the illness for long, because generally speaking, you're more likely to get a better treatment outcome the less somebody has been unwell.
The longer somebody stays unwell, the harder it is to treat, and the less treatment interventions there are to offer. At that point, it becomes really tricky for clinicians to decide, what do I have to offer here? How can I compel somebody into treatment?
Sam: I guess that leads us to this idea of involuntary treatment, which is what I really wanted to get into today. What does that look like?
Sacha: Typically, if an adolescent is refusing treatment, clinicians would look to parents to consent to treatment on the adolescent's behalf. With adults, there is nobody who can consent on their behalf most of the time, and so that's a different story. There's 2 pieces of legislation that cover the use of involuntary treatment in New South Wales. The Mental Health Act is one, and guardianship legislation can also be used.
In a public hospital system, for example, if somebody comes into an emergency department displaying systems that look like an eating disorder, severely malnourished, perhaps they're having cardiac problems. It's determined that the person needs to be seen by psychiatry because that person has an eating disorder. Either the person's told them that themselves, or somebody who has brought them in can tell them that. Then I guess there needs to be a decision around whether or not this person needs to be kept in the hospital and receive treatment. If that person is refusing that, then a decision needs to be made about whether or not there's grounds to hold that person in the hospital against their will.
Sam: How do you keep someone in the hospital against their will?
Sacha: There are public hospitals that contain locked wards. Within those wards, there are patients that are there voluntarily, and in exceptional cases, in a limited number of cases, there are also people that are there involuntarily as well.
Sam: Are we talking about being forcibly given medication, being forced to eat? What processes go into that, if you're comfortable talking about it?
Sacha: There's a range of things that may be considered for somebody with severe anorexia nervosa. If somebody has been malnourished and barely eaten for a really long period of time, there are actually dangers involved in re-feeding that person. It needs to be really closely monitored. There are significant harms to that person that could be caused without that monitoring.
In some instances, if a person is refusing to eat and they could die as a result of that decision, people can be fed through a tube. That might be something that's called for in severe cases, but if that's not called for, what would ideally happen is there'd be some level of collaboration between the patient and the treating team, that a certain meal plan needs to be followed, and that would be closely supervised within that treatment environment.
Sam: It blows my mind that there's so many variables involved. Not only is each patient unique, but the competence, beliefs, and even professionalism of every person involved in the decision-making and treatment process can vary just based on human nature. How can we ensure that each individual patient who may need involuntary treatment receives the best possible care?
Sacha: You make a good point. It is extremely complex, particularly for those adults who may have had the illness for a long time, and most professionals working in this field would make a distinction between severe, chronic patients, or patients who present with severe and acute symptoms of the illness, as opposed to catching a much younger patient who maybe hasn't been unwell for so long that their symptoms are so awful.
It is fraught, and there is a lack of consensus within the professional community around involuntary treatment and when it's justified. Certainly, there would be clinicians in the field that say, "You should never give up hope that a patient might recover. Therefore, involuntary treatment to preserve life is always justified."
There have been cases where a treating team who has known a patient for a long time, and where literally every single treatment intervention has been tried and hasn't worked, in agreement with the patient, it is possible to come to a decision sometimes that the quality of life of this person isn't going to be improved by involuntary treatment, that the clinical team does not have treatment to offer, and it might be determined that that person shouldn't be forced to stay in hospital and receive treatment against their will.
A lot of these decisions are, to a degree, arbitrary. It becomes a professional call at some point to say, "We have tried everything." You shouldn't compel somebody against their will unless you can say with a degree of certainty that what you're going to do is going to do them good, and on top of that, that it shouldn't do them harm. There is no cure for anorexia nervosa. There's lots of treatment methods that are shown to work, and certainly, as I said before, the earlier patients receive treatment, much better outcomes. We're really talking about a small group of patients where it becomes this complicated.
Sam: Just to wrap up, best-case scenario. What would you like to see change about treatment practices over the next few years?
Sacha: More research in this area, I think, will be a great thing for informing new treatment responses. I think listening to people's experiences, as well, of treatment is also valuable. There is, again, more research around that that reports on patients' experiences and the things that actually make a difference to people. They might be things that are hard to find evidence for, but there are things that patients retrospectively can say, "That was a thing that helped me." Patients talk a lot about the impact of their relationships with staff as something that helped them to get through treatment, whether it be involuntary or voluntary.
Ellen: Dr Sacha Kendall Jamieson speaking to Sam King. If this story has raised any issues with you, please call Lifeline on 13-11-14.
Male: You're listening to Think Health on 2SER 107.3.
Ellen: If you need an excuse to stay in bed, today is National Stay in Bed Day. Most of us love any reason to spend extra time between the sheets, to relax with a book or have a note. For the estimated 120,000 Australians who have mitochondrial disease, bed can become a prison as it becomes near impossible to leave it. Mitochondria are part of every cell in your body, and they turn the food we eat into energy the body can use. If your body can't produce this energy, then your organ systems can fail. It's a debilitating and often fatal genetic disease.
Sean Murray is the CEO of the Australian Mitochondrial Disease Foundation. Sean spoke to Ninah Kopel.
Sean: Mitochondrial disease occurs when the mitochondria themselves are not working properly. One of the symptoms, or one of the things that can happen, is that energy production process can be broken down. The mitochondria are not producing enough of that energy that the cells needed, and the cells then are starved of that energy, and they don't function properly, and the organ system that those cells are a part of can then start to be compromised. Because we have the mitochondria all over our body, mitochondrial disease can cause symptoms in any organ system. They can cause symptoms at any age, as well.
Ninah: It's not necessarily something you're born with.
Sean: Because it's a genetic disease, you are born with the genetic predisposition, but you don't necessarily show symptoms from day 1. This is one of the complex things about mitochondrial disease. It can affect children from birth, but it can also happen at what's called adult onset, as well, so symptoms don't present until later in adulthood.
Ninah: You've hinted at the fact that it can manifest in different ways. What are some of the visible signs or symptoms that people who have it express?
Sean: It does present in many different ways. Even within the same family, where siblings have the same genetic change, it can present in vastly different ways. It can affect, as we've said before, any part of the body, but typically those organ systems that are quite energy-hungry. Your brain consumes a vast amount of energy, so symptoms are also presented relating to neurological function or developmental delays, etc. We know it also can affect our large muscle groups, so people would have trouble with exercise intolerance or easily fatigued. It can also affect our heart, our gut, our eyes, our ears, our pancreas, our liver, etc. Patients who have significant or serious mitochondrial disease will often be presenting with multiple organ system issues. Some examples of that are they may have hearing loss, suffer from diabetes-like symptoms, and also have issues with their heart or something like that. We know that that gets very serious as the disease progresses.
Ninah: What made you interested in this area of health and research?
Sean: I have a family connection with mitochondrial disease, now going back for generations. We first became aware of it when my brother, who was just 34 at the time, presented to hospital with what was thought to be a stroke. That's quite unusual in an otherwise fit and young healthy person. He just ended up at the right place where the person there who did the investigations. It didn't show to be a classic stroke. With the investigations that they'd done, it wasn't presenting to have the normal pathology.
Then they looked into family history, etc., and saw that my mother had also been unwell, my grandmother had also been unwell, and her sister, etc., and so were able to quickly identify that this wasn't indeed a traditional stroke, but was what's called a mitochondrial stroke or a stroke-like episode. We knew that from the late '90s, and he presented with that, and then my family and I, we all got tested and diagnosed as having this genetic change that can cause the disease. Unfortunately, my brother passed away probably about a year after the Australian Mitochondrial Disease Foundation was established by our chairman, Doug Lingard, and one of Australia's leading clinicians, Professor Carolyn Sue, who actually was caring for my brother.
I'd already been involved in the foundation. My family's experience with my brother passing away, and subsequently my mother passing away from mitochondrial disease, really firmed my resolved to do whatever I could for this cause.
Ninah: It's taken a huge toll on your family. Is there a cure? Is there a way of treating this?
Sean: Largely no, unfortunately. There's not a lot of pharmacological treatments out there. We know that one of the things that is recommended to patients is really optimising their health, making sure that they're extremely vigilant about nutrition, about rest, about minimising or avoiding toxins, be those environmental or physiological or emotional stresses on their body, and really trying to plan for trying to keep your body system just going on this even keel.
One of the promising things that wasn't really as prevalent as we saw when we started the foundation 7 or so years ago, we're on the cusp I feel of some wonderful developments. There are a lot of drugs in clinical trial now, certainly more so than was the case 7 or so years ago. I feel that we're on the cusp of some pharmacological treatments. It is early days. It's a young field. It's a field in its infancy, this mitochondrial medicine, so we are certainly at the early stages of that, but it really feels like we're at the cusp of some good breakthroughs at the moment.
Ninah: I want to ask you about one of the areas that is being researched around the world in this area, which is mitochondrial donation. Is that something that is being looked into, and is it a plausible option?
Sean: Mitochondrial donation is a preventative IVF technique looking at preventing the transmission of some types of mitochondrial disease from an affected mother on to her child. The way it is proposed to work is looking at basically doing an organelle transplant as such. People who are familiar with organ transplants, where somebody might get a heart transplant or a liver transplant, etc. The mitochondrial donation is really looking at transplanting this faulty mitochondria in an egg or an embryo with mitochondria from a donor, basically replacing the unhealthy mitochondria with healthy mitochondria from a donor, and therefore looking at minimising the possibility of passing on the mitochondrial disease to the result child from that pregnancy.
Ninah: It's quite a complicated issue, isn't it? In a family like yours where you know there is a prevalence, is that an option that you might consider in the future, or you think could help your family in the future?
Sean: One of the nuances about mitochondrial donation is that it would only be relevant for some mitochondrial diseases. You could argue it's roughly half. Half of them are caused by changes in the mitochondria themselves, and the other half are caused by changes in our nuclear DNA. It's certainly something. For my family, it's possibly a little late for, say, my generation. My sisters and I have all had our children. It's certainly something that might be relevant to the next generation in terms of looking at minimising the risk of passing on this potentially terrible disease to their children.
Ellen: Sean Murray, CEO of the Australian Mitochondrial Disease Foundation, speaking to Ninah Kopel. If you'd like to find out more about mitochondrial disease or anything else you heard today, visit our website, 2ser.com/thinkhealth. You can find links to all our past stories as well as transcripts from today. You can also subscribe to the show wherever you get your podcasts. Just search for Think Health. If today's program has raised any issues, go and see your GP. Think Health is produced with the support of the University of Technology Sydney Faculty of Health. I'm Ellen Leabeater. Thanks for your company.
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