My name is Patrik Hutzel from intensivecarehotline.com, with another quick tip for families in intensive care. Here at intensivecarehotline.com, we instantly improve the lives of families of critically ill patients in intensive care so that you can make informed decisions, have peace of mind, control, power, and influence, so that your loved ones always get the best care and treatment in intensive care.  I have been a critical care registered nurse for over 25 years, having worked in 3 different countries, where I worked as a nurse manager for over 5 years in ICU and I’ve been consulting and advocating for families in intensive care all around the world since 2013.

I have a reader question today from Hannah, who says:

“Hi Patrik, 

Do you have any tips for my brother with an intellectual disability who has been on a ventilator for the past 16 days, looking into a tracheostomy now, but currently needs sedation and restraints to prevent him from pulling out the breathing tube? How can he manage recovery with a tracheostomy if he needs restraints? “

From, Hannah

Thank you so much for reaching out. This is one of the most important questions I have received, and it’s one that doesn’t get nearly enough attention in the ICU world. Your brother’s situation, a person with an intellectual disability on a ventilator, needing sedation and restraints to stay safe, is more common than most families realize, and the path forward is absolutely manageable with the right knowledge, the right team, and the right advocacy. Let me walk you through everything you need to know.

Number 1: What is a tracheostomy and why is the ICU team recommending it now?

After 16 days on a ventilator with an endotracheal tube, which is the tube inserted through the mouth or nose and down into the airway, the ICU team is almost certainly recommending a tracheostomy for very good clinical reasons.

An endotracheal tube is a temporary airway. It sits between the vocal cords and causes significant discomfort for most patients, even those without a cognitive impairment. Lying in an ICU bed with a tube down your throat for more than 2 weeks is deeply distressing. For a person with an intellectual disability, that distress can be amplified enormously because they may not be able to understand or contextualize why the tube is there, why they cannot speak, or why strangers in scrubs keep approaching them. The instinct is to pull it out, and that is why your brother is being sedated and restrained.

A tracheostomy changes this equation significantly. A tracheostomy is a surgical procedure typically performed in the ICU operating theatre or at the bedside, where a small incision is made in the front of the neck and a tube is inserted directly into the trachea or windpipe. This bypasses the upper airway entirely. The tracheostomy tube sits lower, causes far less irritation to the vocal cords and throat, and is considerably more comfortable than an endotracheal tube for long-term ventilation support.

Key reasons why the ICU team recommends tracheostomy at this stage:  The endotracheal tube is no longer appropriate for long-term airway management beyond 14 to 21 days. Tracheostomy significantly reduces the need for deep sedation. It allows for weaning from the ventilator more gradually and comfortably for the patient. It is easier to secure and harder for a patient to inadvertently dislodge. It allows the patient to potentially eat, swallow, and even communicate with a speaking valve over time. And it reduces the risk of subglottic injury and tracheal damage from prolonged mechanical ventilation.

In short, Hannah, if the team is recommending a tracheostomy after 16 days, this is a well-founded clinical decision, assuming your brother cannot come off the ventilator. The question is not whether it is the right decision — it almost certainly is — but how to manage the recovery in a way that is appropriate for your brother’s specific needs as a person with an intellectual disability.

Number 2: Why sedation and restraints are being used and what changes after a tracheostomy

You mentioned that your brother currently needs sedation and restraints to stop him pulling out the endotracheal tube. This is a very serious safety concern and the ICU team is right to manage it aggressively.

An accidental self-extubation — a patient pulling out their own endotracheal tube — is a life-threatening emergency in a patient who is ventilator dependent. It can cause immediate respiratory collapse, vocal cord trauma, and it can require emergency reintubation under extremely difficult circumstances.

For a person with an intellectual disability, the cognitive capacity to understand instructions like “do not touch the tube” may be limited or absent, particularly when they are also experiencing the disorientation of an ICU environment, unfamiliar sounds, lights, disrupted sleep cycles, pain, and the physiological effects of critical illness itself. Delirium, a state of acute confusion, is also extremely common in ICU patients of all backgrounds and further reduces a person’s ability to follow instructions or understand their environment.

So how does a tracheostomy change all of this? The key clinical reality is this: once a tracheostomy is in place, the level of sedation required to prevent self-extubation drops dramatically. The tube is shorter, sits more comfortably in the neck, is less irritating to the airway, and is far easier to secure with tracheostomy ties and dressings. Many patients who were agitated and distressed with an endotracheal tube become significantly calmer once the tracheostomy tube is in place — not because they suddenly understand the situation better, but because the primary source of physical discomfort has been removed.

This is particularly relevant for your brother. The reduction in required sedation means his level of consciousness can be higher, which is actually better for his recovery. Higher levels of consciousness allow for better participation in physiotherapy, better swallowing assessments, better communication attempts, and a clearer picture of his neurological and cognitive status.

Restraints may still be required for a period after tracheostomy, particularly in the early post-operative days, but the goal should always be to reduce and eliminate physical restraints as quickly as possible through a combination of comfort measures, environmental modification, and behavioral support.

Intellectual disability in ICU: the specific challenges and a full clinical picture

This is the section that most ICU teams do not have a formal framework for, and it is where family advocacy becomes absolutely critical. Patients with intellectual disabilities are significantly underserved by standard ICU communication and care protocols that assume a baseline level of cognitive function and language comprehension that your brother may not have.

Understanding intellectual disability in the ICU context.  Intellectual disability is a broad term covering a wide spectrum of cognitive impairments — from mild intellectual disability, where a person may be able to understand simple instructions and communicate basic needs, to severe or profound intellectual disability, where verbal communication may be absent and environmental comprehension is very limited. Specific challenges for a person with intellectual disability in the ICU:

Inability to understand or contextualize medical procedures. Your brother cannot be told, “This tube is helping you breathe, please don’t touch it” in a way that he will retain and act on. This is not non-compliance; it is a cognitive reality.

Heightened sensory sensitivity. Many people with intellectual disability, particularly those with autism spectrum disorder as a co-occurring condition, experience sensory stimulation very differently. The ICU environment — alarms, bright lights, physical touch from strangers, unfamiliar smells — may be acutely distressing in ways that neurotypical patients can habituate to more easily.

Communication barriers. If your brother communicates via augmentative and alternative communication (AAC), signing, picture boards, or a device, these tools are almost certainly not available in the ICU. This creates a profound communication black hole at the most frightening moment of his life.

Altered baseline behavior. ICU staff may misinterpret normal behavioral expressions of intellectual disability — self-stimulating movements, vocalization, repetitive behaviors — as signs of agitation, pain, or non-compliance, leading to over-sedation.

Pain assessment challenges. Standard pain assessment tools like the numeric rating scale (0 to 10) are designed for cognitively intact adults. They are not valid for people with intellectual disabilities. Staff need to use observational pain scales and rely heavily on family members who know the person’s normal pain behaviors.

Delirium superimposed on intellectual disability. Delirium is nearly universal in long-stay ICU patients. Recognizing delirium in a patient who already has a cognitive impairment requires specialist knowledge and close collaboration with people who know your brother well — most importantly, you and your family, and any support workers or people around him at home.

What does the ICU team need to know about your brother?  One of the most powerful things you can do right now, Hannah, is to provide the ICU team with a detailed personal profile of your brother. Many hospitals have “this is me” or “all about me” tools specifically for patients with intellectual disability or dementia that capture critical information for care staff. If your hospital doesn’t have one, create your own and insist that it is placed at the bedside and read by every nurse and doctor who cares for him.

What to include in a personal profile for ICU staff:  His preferred name and how he likes to be spoken to. His level of communication and any methods he uses. What his normal behavioral responses to pain, fear, or discomfort look like. What calms him down — favorite music, familiar objects, certain voices, or people. What triggers distress or agitation for him. His sensory preferences — does he tolerate touch; does he need lower lighting or quieter environments? Any co-occurring conditions, such as autism, epilepsy, or specific syndromes. His usual medications, particularly psychiatric or behavioral medications. Who his usual family members, support workers, or treating clinicians are, and whether they can be contacted.

Behavior support and disability-informed ICU care: getting the right team involved.  The standard ICU model is not designed for patients with intellectual disabilities. It is designed for cognitively intact adults who can communicate, follow instructions, and understand their situation to a reasonable degree. Your brother falls outside that design envelope, and without proactive advocacy, he will receive generic care that doesn’t meet his specific needs. You have every right to request specialist support — and in many cases, you can insist on it.

Specialists to request involvement from:  Positive behavior support practitioners. If your brother has an existing behavior support plan, for example, through NDIS (National Disability Insurance  Scheme), if you are in Australia or another provider, contact that practitioner immediately and ask them to liaise with the ICU team. A positive behavior support practitioner can help ICU staff understand what his behavior is communicating and develop strategies that reduce restraint use.

Disability liaison officers. Many major hospitals in Australia and worldwide now have disability liaison officers whose specific role is to support patients with disabilities in the hospital system. Ask the hospital whether they have one and request their involvement urgently.

Clinical psychologists or consultation liaison psychiatrists. If your brother is severely distressed and sedation and restraints are failing to keep him safe, a psychology or psychiatry consultation can help the team develop a more individualized approach to managing his distress. Speech pathologists. Even while ventilated, a speech pathologist can help assess communication options and, post-tracheostomy, begin to work towards use of a speaking valve such as a Passy Muir valve, which may restore his ability to communicate vocally — a significant quality of life milestone.

Occupational therapists. An occupational therapist can help assess what alternative forms of restraint minimization are possible, assess his functional status, and recommend sensory modifications to his ICU environment.  His NDIS support coordinator or disability support workers. Where possible, have familiar support workers or nurses present at the bedside — not just family. For a person with an intellectual disability, a familiar face and voice are powerful calming tools that no sedative or medication can replicate.

The restraint question: your rights and the clinical obligation to minimize

Physical restraints in the ICU are a last resort, not a first-line intervention. Under Australian, US, and UK healthcare standards — and in Australia under the NDIS Quality and Safeguards Framework — the use of restrictive practices, including physical restraint, must be minimized and must be accompanied by a plan to reduce and eliminate them.

After a tracheostomy is in place, the clinical team’s goal should be a structured restraint reduction plan. This might include soft limb mitts, which limit fine motor dexterity without fully restraining the arms, increased one-to-one nursing presence, distraction techniques, environmental modifications, and the involvement of familiar people at the bedside.

Ask the team directly: What is the plan to reduce and eventually eliminate the use of restraints, and what are the milestones?

Treatment options for your brother: what the ICU journey looks like from here

Option 1: Tracheostomy with ventilation weaning

The primary goal and best possible outcome for your brother is a successful tracheostomy followed by a gradual wean from the ventilator. The weaning process involves progressively reducing the amount of ventilation support provided by the machine and increasing the work of breathing done by your brother independently. This process can take days, weeks, or — particularly in patients with pre-existing conditions that affect respiratory muscle strength or lung function — even months.  For a person with an intellectual disability, the weaning process requires patience and a highly individualized approach because the standard weaning assessment tools — breathe deeply, cough, squeeze my hand — are not valid for patients who cannot follow those commands.

Key milestones in the ventilation weaning process: reduction in ventilation rate and pressure support to assess respiratory effort; spontaneous breathing trials (SBT) — periods of unassisted or minimally assisted breathing; weaning of sedation in parallel with ventilation weaning; introduction of a speaking valve once the tracheostomy cuff can be deflated; swallowing assessment by speech pathology to determine oral feeding safety; gradual transition to daytime ventilation weaning with potential for overnight ventilator support if needed; and tracheostomy decannulation — removal of the tracheostomy tube  — as the final step if weaning is successful.

Option 2: Tracheostomy with partial weaning — long-term nocturnal or part-time ventilation.  If your brother’s underlying condition affects his respiratory drive, muscle strength, or lung function in a way that prevents full independence from the ventilator, a partial weaning outcome is possible and very livable. In this scenario, he would breathe independently during the day but require ventilation support during sleep, which is non-invasive ventilation via a mask or ongoing tracheostomy ventilation. This is a model that tens of thousands of people around the world live with very successfully and comfortably, including at home.

Option 3: Long-term ventilation when weaning is not possible

In some cases, depending on the diagnosis that brought your brother to the ICU and his underlying health and neurological status, full weaning from the ventilator may not be achievable. If that is the clinical reality, it doesn’t mean his only option is to remain in an ICU indefinitely. It means the conversation needs to shift to long-term ventilation management, which can absolutely be provided at home with the right intensive care nursing support.

Option 4: Palliative care and goals of care conversations

I want to include this option, Hannah — not because I’m suggesting it is the right path, as I have no idea of your brother’s specific diagnosis or prognosis — but because it is a conversation that may be raised by the ICU team if his underlying condition is not reversible or if his quality of life on long-term ventilation is felt to be very poor.

If this conversation is raised, I would strongly urge you not to make any rushed decisions without understanding the full clinical picture, getting a second opinion, and having an advocate — whether that is me and the intensivecarehotline.com team or another expert — present in that conversation. Decisions about withdrawing life-sustaining treatment for a person with an intellectual disability who cannot consent or advocate for themselves are among the most serious and legally complex discussions in medicine, and you deserve expert support to navigate them.

Why access to all medical records is non-negotiable.  You cannot effectively advocate for your brother without access to his complete medical records. As his family and potentially his legal guardian or person responsible under state guardianship legislation, you have the right to request them.  The medical records contain the clinical reasoning behind every decision made about your brother’s care, including the decision to sedate him, to restrain him, and now to recommend a tracheostomy. They will contain the nursing and medical notes documenting his behavior, his responses to treatment, and any incidents including any attempted self-extubations. They will contain the results of every investigation — arterial blood gases, chest X-rays, CT (Computed Tomography)scans, cultures, lung function — that is informing the team’s prognosis and treatment plan. They will contain the medication administration record showing exactly what sedatives, analgesics, and other drugs he has received and at what doses. They will show whether any specialist consultations — disability, psychology, behavior support — have actually been requested and acted upon.

Without this information, you are making decisions and asking questions in the dark. With it, you engage with the clinical team as an informed partner, or you can challenge decisions you believe are not in your brother’s best interests.  Request the records now and request them in writing. Ask for the nursing notes, the doctor’s notes, medication charts, investigation results, pain and sedation scores, delirium scores, ventilation charts, vital signs, and fluid balance charts. Leave no stone unturned. If you are told you cannot have them, ask for the hospital’s formal process for family access to medical records — every hospital around the world has one.

How intensivecarehotline.com can help you right now.  What you are describing, Hannah — a loved one with intellectual disability on a ventilator, needing sedation and restraints, facing a tracheostomy, with a family trying to understand what is happening and what comes next — is exactly the situation our service was built for.  We can help you with a one-hour consulting option. We have 7-day unlimited email and phone access. We have a consulting call option where you can have unlimited consulting calls in a 7-day period, including email access and medical record review. We also have an ongoing monthly membership for our clients.  You can reach us at intensivecarehotline.com, call us  on one of the numbers on the top of our website, or send us an email to [email protected].

If your brother cannot be weaned, Intensive Care at Home is the long-term answer

Hannah, whether your brother successfully weans from the ventilator or requires long-term ventilation support, I want you to know that there is a life beyond ICU — even on ventilation, with or without a tracheostomy. And in most cases, that life is far better lived at home than in an institutional ICU.

The home ventilation and Intensive Care at Home model is not new. In Germany, where I trained, home ventilation for ventilator-dependent patients has been a mainstream, well-funded healthcare pathway for nearly 30 years. It is now also a well-funded mainstream pathway in Australia as well. Thousands of people with complex medical needs, including intellectual disabilities, live at home with professional nursing support, mechanical ventilation, and tracheostomy.

Intensive Care at Home provides specialist critical care registered nurse support at home 24/7 where required — invasive ventilation management, tracheostomy ventilator management at home 24/7 with critical care trained nurses, tracheostomy care, suction and airway management with critical care nurses 24 hours a day, medication management, complex wound care, and all aspects of high dependency and intensive care nursing.

NDIS-funded care is available for eligible participants in Australia. Your brother may well be eligible given his intellectual disability and ventilator dependence. But even if you are watching this from another country — US, UK, Canada — reach out to us, we can help you there as well.  Intensive Care at Home is fully third-party accredited. No other service provider has achieved that level of accreditation for Intensive Care at Home. We can also provide palliative care support at home for patients and families who choose comfort-focused goals.

The critical point, Hannah, is this: if the ICU team is talking about long-term ventilation, tracheostomy, or if weaning is progressing slowly, start planning for home care with Intensive Care at Home now. The earlier we are involved in the discharge planning process, the smoother and faster the transition. We have successfully brought home many patients far more complex than your brother.

Go to intensivecareathome.com to learn more and see our accreditation and quality framework at intensivecareathome.com/accreditation-quality. You can also review our mechanical home ventilation guidelines — evidence-based — on our intensivecareathome.com website.I know your brother is very lucky to have someone who cares enough to ask these questions and to push for better. The ICU world can feel impenetrable — full of jargon, hierarchy, and clinical certainty that can leave families feeling powerless. You are not powerless. You are the person who knows your brother better than any doctor or nurse in that unit. That knowledge is irreplaceable and, with the right expert support behind you, is also powerful.

I have worked in critical care nursing for 25 years in three different countries where I worked as a nurse manager for over five years in intensive care. And I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. And I can very confidently say that we have saved many lives with our consulting and advocacy, because of our insights, and you can verify that on our testimonial section  at intensivecarehotline.com and you can verify it on our intensivecarehotline.com podcast section, where we have done client interviews.

And because our advice is absolutely life-changing, right? The biggest challenge for families in intensive care is simply that they don’t know what they don’t know. They don’t know what to look for, they don’t know what questions to ask, they don’t know their rights, and they don’t know how to manage doctors and nurses in intensive care. And that’s why we help you to improve your life instantly, making sure you make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets the best care and treatment always. And that’s why you can join a growing number of members and clients that we have helped over the years, saving their loved ones’ lives.

And that’s why I do one on one consulting and advocacy over the phone, Zoom, WhatsApp, whichever medium works best for you. And I talk to you and your families directly. I handhold you through this once-in-a-lifetime situation that you simply cannot afford to get wrong. And when I talk to families directly, I also talk to doctors and nurses directly, asking all the questions that you haven’t even considered asking but must be asked when you have a loved one critically ill in intensive care.  I also represent you in family meetings with intensive care teams.

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Thank you so much for watching.

This is Patrik Hutzel from intensivecarehotline.com, and I will talk to you in a few days.

Take care for now.