Before starting NIV
Discussing respiratory support and NIV
Discussions about non-invasive ventilation (NIV) should begin early, ideally at diagnosis.
Discussing NIV with patients
Early discussions allow the patient to plan their care. If the patient agrees, it is important to involve the patient’s family members in the discussions so they can raise any concerns.
In the following video, James explains how he found early, comprehensive discussions about NIV helpful and made him feel at ease about using it.
“Hello, my name is James. I’m 30-years-old, from Doncaster in South Yorkshire. I was diagnosed with motor neurone disease in November 2017 at the age of 29. It’s one of those things that life puts in front of you, that’s my view of it, and for me it’s helping people in years to come. That’s what I want to achieve from my shorter journey. I know that people will have gleaned a lot of help from my experiences.”
Steph (James’s partner)
“Obviously, when he received the diagnosis on that day, he was very upset. It was strange because I thought that for a long time, you know, he may be quite down about it and struggle. He didn’t. Obviously, we also had just had the baby six days prior to his diagnosis. That was a big thing as well, he said, you know, I want to be positive for the baby and I want to be a role model for the baby and try and be a normal family, if you like, and continue with life.”
“I was experiencing a lot of yawning during the day, feeling tired. So, what they said was ‘we’ll just get you checked out. We’ll send you for a 24-hour oximetry which will measure your oxygen levels.’ They looked at the results and it was there that she said ‘your oxygen levels have dipped a little bit.’ I think the lowest one was 83%, which is not good really - as your oxygen levels should be in the high 90’s, or at least the low 90’s.
So, she issued me with it and said ‘I want you to get used to it, the NIV machine and the benefits it can give.’ She explained it really well; what it would do and what it would help with. ‘We just want you to get used to it so that, when eventually you need it a lot more than you need it now, you’re ready for it and you’re not struggling to get used to it when you’re dependent on it and we think it will benefit you a lot more as well now.’
To be honest, I thought it was going to be a lot bigger. I hadn’t really seen one and she brought it out in this little gym bag, as you call it. I was like ‘Well, it’s pretty tiny to be fair’, that’s what I thought. She went though it really thoroughly. I’m really pleased with how she put me at ease with it, and that was it, we brought it home.”
Some patients may not want to discuss NIV at diagnosis or may already be rapidly progressing. How might you overcome these barriers?
It is important that healthcare professionals respect the patient’s wishes if they choose not to discuss NIV. However, professionals should make sure to provide regular opportunities for discussion in order to revisit the patient’s wishes.
Enabling the patient to make a decision will involve building rapport, providing information and facilitating discussions. Patient information leaflets can be helpful when patients do not want to talk about breathing support straight away. It may also be helpful to direct people living with MND and their family members to myBreathing. This is an online website designed to give people living with MND and their family members an insight into breathing support in MND.
The discussions should be honest, comprehensive and sensitive. Each member of the multi-disciplinary team should be involved in facilitating these discussions throughout the patient respiratory care pathway.
In the following clip, Professor Chris McDermott, a Consultant Neurologist, describes the challenges of introducing NIV.
Challenges of introducing NIV to people living with MND
Professor Chris McDermott
“There are many challenges of caring for people with MND and supporting them through their journey. I think that, when we’re beginning to talk about breathing support for patients, introducing the concept of non-invasive ventilation, that’s a particularly challenging time because you’re acknowledging that, perhaps, a new part of their illness with MND has started.
There’s a lot for the patient to take in, they’re taking home equipment that might initially be frightening to them, you know, taking home this equipment, this ventilator, so there’s often anxiety for the patient.”
In the following clips, Matt Cox, an Extended Scope Respiratory Physiotherapist, describes how he manages early discussions about NIV by gauging how much understanding the patient has about how breathing is affected in MND, and the importance of having a multidisciplinary approach.
How to manage early discussions about NIV and the importance of gauging how much understanding the patient has about how breathing is affected in MND
“A lot of the time, my first questions will be ‘Do you know why you’re here?’ but also ‘What do you understand about the effect that MND has on your breathing?’ and ‘Have you heard of non-invasive ventilation?’ So just try and gauge their level of understanding before you start discussions.
Some patients will come with a lot of prior knowledge and have done a lot of reading and have done a lot of research into their condition and into the respiratory complications of MND. Some patients will come and either won’t have had those discussions or won’t have listened to those discussions.
If those sorts of things have been discussed alongside diagnosis, quite often patients haven’t taken it in and haven’t heard what’s being told to them. So, I think, trying to gauge their level of knowledge and understanding is the place to start with those discussions.”
The importance of having a multi-disciplinary approach when introducing the concept of NIV
“I think it’s important to recognise that motor neurone disease is a complex condition. Introducing NIV isn’t an easy thing to do; there’s often a lot of things that make it very difficult. So it’s important to involve all members of the multidisciplinary team when trying to troubleshoot and trying to introduce non-invasive ventilation.”
People living with MND also experience psychological difficulties. In the following video, Dr Emily Mayberry, a Clinical Psychologist, describes the psychological difficulties that people living with MND face, particularly when thinking about NIV.
Describing the psychological difficulties that people with MND face, particularly when thinking about NIV
Dr Emily Mayberry
“My name is Emily Mayberry and I’m a clinical psychologist in the motor neurone disease team in Sheffield. As a psychologist, when I see people with MND, they often describe feeling like they’re experiencing multiple losses; those symptoms they have, even before knowing what the symptoms are caused by; and then there’s receiving a diagnosis and all of the loss that brings in terms of thinking about the future and what it means for them and for their health and their family; and then, over time, people continue to experience more losses as their health deteriorates.
They need more help, they lose more independence, lose more mobility and - depending on the person and the things that matter to them and the course that the MND takes - it can continue that way.
I think it can be a really hard thing for people to accept and come to terms with as well. Many people don’t want to think about it or don’t want to talk about it, and in some ways that’s really helpful. If people can focus on the present and the here-and-now, then they aren’t spending their time worrying about the future or grieving for the losses that they’ve had.
But, at the same time, if people don’t spend any time thinking about the future and the things that matter and how they want things to be then, actually, that can cause a lot of problems for them down the line as well. So, it’s a real balancing act, but I think the grief that people experience and the coming to terms with it, and what that means, and getting that balance between being present and focused on what matters now versus planning for the future as well.
NIV can be both an immediate sort of threat to people, in terms of the item itself feeling frightening, but it can also symbolise the loss of independence, the loss of control, the loss of ability to breathe and can therefore remind people of those really deep worries that they have as well.”
In the following clip, Debbie Freeman, a Respiratory Nurse, provides advice on how to manage the situation if a patient does not want to discuss NIV, including the need to consider that their carers may wish to have discussions.
How to support patients who choose not to discuss NIV
“Patients don’t always want to talk about the future and we have to go at their pace. I think what’s really important is that you give them the opportunity to engage in those conversations every time you meet them. I often ask them if there’s anything else they want to talk about, do you have any concerns, do you have any new questions that you want to talk about? I also give the carers an opportunity to ask questions.
Very often we find that - at the front door - carers have questions for us, that relate to end of life, that they don’t want to discuss in front of the patient. So you have to manage it very sensitively but, as long as you’re available to deal with that when you can and put things in place to support them, you can manage without them wanting to have direct information.”
When introducing the idea of respiratory support, what do you discuss with the patient (and their family members)?
In the following video, Debbie describes what she discusses with patients when introducing the idea of NIV.
When introducing the idea of using NIV and the possible benefits of using it, the emphasis should be on the potential for NIV to improve quality of life rather than survival. In the following clip, Matt describes the importance of patients being told that they have a right to stop using NIV at any time.
It is important that the patient understands that if they decide to trial NIV that they can stop using NIV at any time if they change their mind. They should be reassured that this is ethical and legal in the UK, and that healthcare professionals will support them. It is important that healthcare professionals discuss the limitations of NIV and how their use of NIV might change with disease progression.
Whilst having these discussions, the patient and their family members should be given the opportunity to discuss possible future scenarios (eg becoming 24-hour dependent) and how it might affect their daily living (eg the impact on their care needs).
The patient’s capacity and understanding should be regularly reviewed and checked to ensure that the patient understands what NIV is and what it can achieve; the need for regular review and has enough information to make informed decisions about options relating to breathing support.
Good practice points
Healthcare professionals should respect the patient’s wishes if they choose not to discuss NIV but should revisit the patient’s wishes.
Discussions about NIV should be honest, comprehensive and sensitive including the benefits and limitations of NIV.