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Is it Ethical to Withhold a Tracheostomy from MND (Motor Neurone Disease) Patients?
Is it ethical to withhold the tracheostomy from MND patients? If you want to know the answer to that question, stay tuned. I’ve got news for you.
My name is Patrik Hutzel from intensivecareathome.com. So, one of the questions I get quite frequently here at Intensive Care at Home is, whether it’s ethical to withhold tracheostomy from MND patients? I will break this question down for you today.
Just to give you some background, I’m a critical care nurse by background, and I have worked in critical care nursing for over 25 years in 3 different countries. I’ve been working in intensive care as a critical care nurse. I’ve been working with Intensive Care at Home for a very long time, including in Germany in 2001, starting a pioneering service there and then when we looked after MND patients at home nearly 25 years ago in Germany with the tracheostomy.
So, this is a timely question here in Australia, in particular, because we are seeing that, especially in Victoria, MND Victoria is not advocating for tracheostomies for MND patients. They’re 30 years behind, and that’s their choice, and that’s okay because they haven’t woken up to reality.
So, let’s look at the ethics of potentially withholding tracheostomy from patients from motor neurone disease. It’s a complex decision, of course, and it depends on several factors, but here’s the crux of it.
It includes the patient’s wishes. If a patient’s wishes clearly say they want a tracheostomy and organizations such as intensive care units or motor neurone disease association / “advocacy organizations” refuse to advocate for it, then something’s clearly wrong and it’s not ethical. So, of course, it also includes quality of life considerations, includes cultural and societal norms, and medical ethics principles such as autonomy, beneficence, non-maleficence, and justice.
But quality of life can be provided, especially with a service like Intensive Care at Home and with the NDIS funding the service. So, but let’s break it down even further. Let’s look at some key ethical considerations.
Number one, first and foremost is of course, patient autonomy. Imagine that, patient autonomy. Respecting the patient’s right to make informed decisions about their care is paramount. If an MND patient chooses to decline a tracheostomy after being fully informed of the risks, benefits, and alternative, it is ethical to respect the decision, and of course, it is. On the other hand, if a patient desires a tracheostomy, their preference also must be honored, provided the procedure aligns with medical best practice.
It aligns with medical best practice because, like I said, we’ve been looking after MND patients at home with a tracheostomy in Germany 25 years ago, and it’s best practice there, and patients and families have a choice. So, if MND Victoria is not advocating and wants to stay behind best practice and wants to stay 25 or 30 years behind other countries, well, that’s their choice. Well, we are on the ball, and we are advocating for what has been happening in other countries for decades.
Next, informed consent. Patients must be provided with comprehensive, clear, and unbiased information about the procedure, including the potential benefits such as prolonging life and alleviating breathing difficulties, the risks and burdens including dependence on mechanical ventilation and possibly impact on quality of life, and alternatives such as non-invasive ventilation or palliative care.
Next, quality of life. MND is a progressive, incurable condition, and the impact of a tracheostomy on the patient’s quality of life is a critical consideration. While it can prolong life, it may also lead to physical and emotional challenges such as increased dependence, communication difficulties, and social isolation.
If I may just say here, quality of life is just a perception. It’s no more than that. It’s a perception that’s based on the individual, not on intensive care teams, not on MND associations. It’s based on the individual and their families. I can confidently assure you that we have clients at home living with motor neurone disease for over 5 years with a tracheostomy and they want to live, and the NDIS has been funding critical care nurses, 24 hours a day. So, for any motor neurone disease association to say the funding isn’t there, it’s just a lie. It’s just a lie. So, you got to wake up to reality.
Next, beneficence and non-maleficence. Clinicians have a duty to act in the patient’s best interest, which is beneficence, while minimizing harm, non-maleficence. If a tracheostomy is unlikely to improve quality of life, it could lead to significant suffering withholding, maybe ethical, particularly if aligned with the patient’s values. On the other hand, it’s the same that if it is likely to improve quality of life, which it does in most cases, and it doesn’t lead to suffering, which it doesn’t in most cases, and it’s also ethical if aligned with the patient’s wishes and values.
Next, advanced directives and decision-making capacity. If a patient has an advanced care directive or has expressed their wishes regarding life sustaining treatments, these should guide care. For patients who lack decision-making capacity, surrogate decision makers and healthcare teams must act in accordance with the patient’s known or presumed wishes.
Lastly, justice, resource allocation, and equitable access to care can be a consideration. In some healthcare systems, the availability of long-term care for tracheostomized patients may influence decisions. But the good news is in in a country like Australia with services like Intensive Care at Home, that is no longer a consideration, especially with NDIS funding now.
So, let’s conclude today’s subject.
It can be ethical to withhold a tracheostomy, and it can be unethical to not perform a tracheostomy from MND patients if the decision is inconsistent with the patient’s wishes. So, the decision must be consistent with the patient’s wishes, that’s really what it comes down to, and with their informed preferences. The anticipated benefits of a tracheostomy, if they’re outweighing the potential harms, and it aligns with the patient’s wishes, then of course a tracheostomy must be performed.
Ethical decision making in such cases should involve open communication, shared decision making, and multi-disciplinary support, ensuring the patient’s dignity and values remain central.
So, I hope that clarifies, and we have successfully advocated for tracheostomies for our clients, whether it’s with MND, whether it’s with cerebral palsy. We have always played a big part in the advocacy for our clients. Otherwise, we wouldn’t be in business. We are critical care nurses. We employ hundreds of years of critical care nursing experience combined in our Intensive Care at Home service.
So, we understand intensive care inside out, but we also understand what’s happening and what’s possible in the community inside out, because with Intensive Care at Home, we are sending our critical care nurses into the home, 24 hours a day. Therefore, we are providing a genuine alternative to a long-term stay in intensive care for ventilation with tracheostomy, Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure), ventilation without tracheostomy, tracheostomy without ventilation, Home TPN (Total Parenteral Nutrition), home IV potassium infusions, and home IV magnesium infusions. We’re also providing ventilation weaning at home. We’re also providing central line management, PICC (Peripherally Inserted Central Catheter) line management, Hickman’s line management, as well as port-a-cath management for home TPN, but also for IV infusions and IV antibiotics. We’re also providing nasogastric tube management, PEG (Percutaneous Endoscopic Gastrostomy) tube management at home, as well as palliative care services at home.
We’re also sending our critical care nurses into the home for emergency department bypass services. We have done so successfully as part of the Western Sydney Local Area Health District, their in-touch program, saving approximately $2,000 per patient that we keep at home, instead of going to the emergency department.
Therefore, we’re also in a position to cut the cost of an intensive care bed by around 50%. An intensive care bed costs around $5,000 to $6,000 per bed day. Our service costs between $2,500 to $3,000 per bed day, and we are freeing up the most sought-after bed in the hospital, which is the ICU bed. But more importantly, we’re improving the quality of life for patients and their families so that it remains a win-win situation for all stakeholders.
With Intensive Care at Home, we’re currently operating all around Australia in all major capital cities as well as in all regional and rural areas. We’re an NDIS (National Disability Insurance Scheme) approved service provider all around Australia, TAC (Transport Accident Commission) and WorkSafe in Victoria, iCare in New South Wales, NIISQ (National Injury Insurance Scheme in Queensland), as well as the Department of Veteran Affairs all around Australia. Our clients and we, as providers, have also received funding through public hospitals, private health funds, as well as Departments of Health.
We are the only service provider in Australia that has achieved third-party accreditation for Intensive Care at Home in 2025. We have been achieving this high level of accreditation since 2012, which is when we first started. No other provider has achieved this high level of accreditation in the community and has created more intellectual property for Intensive Care at Home nursing than we have. That puts us in a position to employ hundreds of years of critical care nursing experience combined in the community. No other service provider in 2025 employs a higher skill level in the community than we do, which enables us to look after the highest acuity adults and children in the community in Australia safely.
If you’re in ICU or if you’re a family member in ICU that’s long-term ventilated, and you’re watching this, or even if you’re at home already and you’re watching this and you realize that you don’t have the right level of support at home, or if you realize if you’re stuck in ICU, that you don’t get the right level of support there, then you should reach out to us at intensivecareathome.com.
I’ll give you an example of how we helped one of our clients in the past. One of our first clients over 10 years ago was a client who was at home on a ventilator with a tracheostomy with a support worker model 24/7. Of course, support workers cannot look after a client at home on a ventilator with a tracheostomy. That is like flying the airplane with the cabin crew instead of the pilot because anyone on a ventilator with a tracheostomy is at very high risk of medical emergencies or dying if they don’t have critical care nurses looking after them 24/7. This is evidence-based. It’s documented in the Mechanical Home Ventilation Guidelines that you can find on our website.
Think about it. In intensive care in a hospital, you wouldn’t have support workers to look after a critical care patient on a ventilator with a tracheostomy. So, why would anyone in their right mind do that in a home care environment?
So eventually, this client found out about us. We were proving our concept with this client very fast. When we worked with the client, we sent him critical care nurses, 24 hours a day, and he never ever went back into ICU ever again, because we are providing evidence-based care, and we were proving our concept there very fast.
We can do the same for you if you’re not safe at home, or if you’re no longer safe in a hospital and you want home care, and that also includes the advocacy for funding that goes along with it. We have always successfully advocated for our clients, otherwise we would not be in business.
This is also why we’re providing Level 2 and Level 3 NDIS Support Coordination. We have a team of NDIS Support Coordinators, and they have a wealth of knowledge. I’ve done an interview with Amanda Riches, one of our NDIS Support Coordinators, and we’ll put a link to an interview with Amanda in the written version of this blog. We’re also providing TAC case management and WorkSafe case management in Victoria with Lucy McCotter.
If you’re an NDIS Support Coordinator or a case manager from another organization watching this, if you’re looking for nursing care for your participants, please reach out to us as well. If you’re looking for funding for nursing care for your participants and you don’t know how to go about it, and what evidence to provide, I encourage you to reach out to us as well. We can help you with the right level of funding and with the right level of advocacy. We’re also providing NDIS specialist nursing assessments done by critical care nurses with a legal nurse consulting background.
If you are a critical care nurse and you’re looking for a career change, and you want to join a very progressive, dynamic, and high performing team of critical care nurses in the community, we are employing hundreds of years of critical care nursing experience combined. If you’re looking for a career change, we’re currently hiring for jobs for critical care nurses in Melbourne, Sydney, Brisbane, in Albury, Wodonga, Bendigo, in Geelong, and in Warragul in Victoria. If you have worked in critical care nursing for a minimum of 2 years pediatric ICU, ED, and you have already completed a postgraduate critical care nursing qualification, we will be delighted to hear from you.
I have a disclaimer because we are offering a tailor-made solution for our clients, which includes regular staff, our clients do want the same staff coming over and over again because our clients are so vulnerable and so special, that’s why we need regular staff. So, if you’re looking for agency work where you can come and go, this will not be the right fit for you. We’re looking for consistency and our clients are looking for consistency. So please, only apply with us if you can give us regular and consistent availability for shifts and you’re really keen on building relationships with us and with our clients.
If you are an intensive care specialist or an ED specialist, we also want to hear from you. We’re currently expanding our medical team as well. We can also help you eliminate your bed blocks in ICU and ED for your long-term patients, or for your regularly readmitting patients with our critical care nursing team at home. We are here to help you take the pressure off your ICU and ED beds. In most cases, you won’t even pay for it. Even if you do pay for it, it’s much more cost effective than what you’re paying for in ICU and ED for, and you get the same level of care.
If you’re a hospital executive watching this and you have bed blocks in your ICU, ED, respiratory wards, please reach out to us as well. We can help you there fast.
If you’re in the U.S. or in the U.K. and you’re watching this and you need help, we want to hear from you as well. We can help you that privately or with one-on-one consulting and hiring nurses privately.
Once again, our website is intensivecareathome.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected].
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Thank you so much for watching.
This is Patrik Hutzel from intensivecareathome.com and I will talk to you in a few days.
Take care for now.