Providing bespoke care nationwide for clients with spinal injuries and neurological conditions
A tracheostomy is a surgical opening made into the trachea (windpipe) through the skin at the front of the neck. The procedure for creating the opening is a tracheotomy, the opening itself is a tracheostomy. Tracheostomies can be performed rapidly in emergency situations, or can be done as a planned procedure in an operating theatre. Having a planned tracheostomy usually requires the same planning as any surgical procedure, and the surgical team will give specific instructions for the individual – usually stopping blood thinners for a few days and fasting for a few hours before the procedure.
The main use of a tracheostomy is to bypass the oral-nasal route for breathing, and to enable mucous and secretions in the airway to be easily cleared.[i] Tracheostomies can be short term, to manage acute illness requiring ventilation which bypasses the oral route, or can be long-term or permanent.
A tracheostomy can be placed when normal oral/nasal breathing is restricted, such as when there is a blockage in the upper airway due to cancers of the mouth and throat or when there is no alternative during a choking episode or swelling in the mouth and throat from anaphylaxis. Some people who spend an extended amount of time on a hospital ventilator have a tracheostomy fitted for mechanical ventilation; this is usually safer and easier to manage in the longer-term than a ventilator tube in the throat.
A tracheostomy performed to help manage an emergency or short-term, acute illness may be removed when no longer needed, and the tracheostomy hole in the throat can be stitched or left to heal, usually leaving only a small scar.
A tracheostomy can also be made as an alternative to normal (mouth and nose) breathing for people who are unable to breathe independently, perhaps because of degenerative neurological conditions, high spinal cord injuries[ii], or brain damage.[iii] It can also be made for people who have significant blockages or narrowings in the upper airways, perhaps due to tumours of the mouth and throat.
Living with a lifelong tracheostomy will mean making some adjustments, and the adjustments needed can also depend on the reason for the tracheostomy.
The main difference between types of tracheostomy tubes is whether they are ‘cuffed’ or ‘uncuffed’.
A cuffed tracheostomy tube is held in place with a small balloon inflated inside the trachea. The cuff is essential for people who have ventilation at pressure – positive pressure ventilation is where the ventilator pushes air into the lungs, and requires a tracheostomy which is cuffed to prevent leaks. Cuffed tracheostomy tubes stay in place by having an outer flange and inner cuff, and a thin tube passing through the tracheostomy opening in between.
A fenestrated tracheostomy is a cuffed tube that has small fenestrations or ‘windows’ within the tube which allows air to pass the tracheostomy tube and be expelled through the mouth or nose – this is useful for someone who has some ability to breathe independently but needs some ventilation or suction, and usually helps to preserve someone’s ability to speak. An insert can be used to cover these windows to allow for mechanical ventilation.
An uncuffed tracheostomy tube is held in place with a neck strap and aren’t suitable for people who need positive pressure ventilation. They are useful for helping clear mucous and secretions on the chest in people who have some ability to breathe independently but who cannot easily clear secretions from their lungs.
Tracheostomies can also have either a single or double cannula – a single cannula tracheostomy tube is a simple tube, usually for shorter-term use. A double cannula tracheostomy tube has a fitted tube with a further, removable insert which lines the outer tube and can be removed to make it easier to clean and to stop it becoming clogged up.
When someone is medically stable, finding the best place and way for them to live is the next step. Learning to live with a tracheostomy[iv] may just be one part of a larger rehabilitation programme, especially after a life-changing event or illness. Rehab means helping someone get as stable and functional as possible, and then working out how to support any ongoing extra needs. Some people with complex care needs may find that a long-term care home or assisted living facility is the best place to meet their needs safely and effectively. Now, however, more and more people with complex care needs are living safely at home with support from specialist carers to make up any new self-care deficits.
When medically stable and planning to go home after a tracheostomy, a person with a permanent tracheostomy or their family and carers will have to be able to care for and manage their tracheostomy at home. This will include cleaning and changing the tracheostomy equipment, and may also mean managing ventilators, suction machines, and knowing what to do in an emergency. Getting used to a tracheostomy can take a little time, but they can soon become a normal part of life.
People who rely on home ventilation should tell their energy suppliers, and will be prioritised in the event of any disruption to service, and will always be kept informed of planned works. They may also be able to get free regular gas and electricity safety checks and other practical and financial support. Ventilators are considered life support equipment and so good battery life and back up is essential.
Going home with a tracheostomy, especially when it is used for mechanical ventilation, usually means making space for some new equipment! Some of the equipment for tracheostomies and home ventilation includes:
All equipment used for a tracheostomy needs to be kept scrupulously clean, and some equipment is disposable or for single use only.
As well as equipment, someone with a tracheostomy needs someone competent and confident in tracheostomy care and the use of any necessary equipment. This can be the person with the tracheostomy themselves, or they may need the support of family members or a dedicated care team. People who are ventilator-dependent are at higher risk from any malfunction or problems, and so should be able to have immediate support for any problems – a round-the-clock care package is often the best solution for people who are ventilator-dependent.
Living with a tracheostomy takes some adjustment and is often only a small part of a larger change in health, function, and lifestyle.
It can take a little time to adapt to speaking with a tracheostomy – normally, to speak, air passes the vocal cords and out of the mouth; we have control over the movements of the vocal cords and our mouths and so it’s easy to form sounds and words. People who still have the use of their upper airways can have a special type of tracheostomy tube or attachment fitted which acts as a valve allowing them to breathe out through their mouth instead of most of the air going through the tracheostomy; this allows them to speak relatively normally, although the voice is usually somewhat changed and may not have the same strength and control.
Depending on the reason for the tracheostomy, it may not be possible to speak this way – people with neurological disorders or spinal cord injuries may not have enough control over their diaphragm – the muscle responsible for breathing – to form words. Alternatives for communication can include writing, typing, and sign language for people who have control over their hand and arm movements. A speech and Language Therapist (SALT) will be able to help find the best solutions to communication difficulties.[v]
Having a tracheostomy, and the underlying reason for a tracheostomy, can have a significant impact on swallowing. A speech and language therapy team can help find solutions to impaired swallow, or plan alternatives to oral nutrition and hydration, such as feeding tubes.
Some people with tracheostomies need them to support breathing and respiratory function for some or all of the time. People who are completely unable to breathe on their own will need to be on a ventilator all the time, except for very short breaks for suction or cleaning the tracheostomy site and tube.
People with tracheostomies can be on permanent or part-time mechanical ventilation, or they may be able to breathe independently through their tracheostomy, or they may be able to breathe normally through their mouth and nose some or all of the time.
Some people with tracheostomies breathe room air, whether that is through normal respiration or through a mechanical ventilator, or they may require air that is mixed with a higher percentage of oxygen, in which case they also need home oxygen supplies.
More people than ever before live at home with complex care needs, including ventilation.[vi] There are lots of different types of home ventilators[vii] – some of which are fairly large and difficult to move, and some of which are smaller portable units with a good battery life. This means that needing home ventilation, even if it’s full-time, doesn’t mean that a person can’t get out and about, even go away on holiday, as long as they have the right equipment, spares and support.
Having a tracheostomy – and having the sort of illness or incident that means that a person needs a tracheostomy – can be traumatic and overwhelming. A tracheostomy is usually quite a visible sign that someone has been acutely unwell, and some people can feel self-conscious about it. Some people prefer to hide their tracheostomy under a loose scarf or similar, whereas others find this feels restrictive. There is no right or wrong way to feel about any changes to your body or function, but if you’re having negative feelings about your changing health and needs, you’re not alone and there are numerous support networks to access.
There are lots of reasons why someone might need a tracheostomy, and some of those reasons might mean that a person has other extra care needs, and that they are unable to manage their tracheostomy themselves. Some people are able and comfortable cleaning, suctioning and generally caring for their own tracheostomy, whereas others may need others to care for their tracheostomy, and sometimes to help with other care needs too.
Care packages are available which specialise in complex care needs, and tracheostomy care is a common part of that kind of package. Carers and nursing teams which are chosen specially to meet the needs of an individual can be highly trained in those specific care requirements, and so a provider which allocates teams for full-time care of an individual are best placed to meet that person’s needs.
Living with a tracheostomy requires adjustment, but support is available to cover any extra needs a person has, and so having a tracheostomy fitted doesn’t have to mean accepting poor quality of life. The right care can facilitate a happy, healthy lifestyle.
[ii] Zimmer, M. B., Nantwi, K., & Goshgarian, H. G. (2007). Effect of spinal cord injury on the respiratory system: basic research and current clinical treatment options. The journal of spinal cord medicine, 30(4), 319-330.
[iii] Koutsoukou, A., Katsiari, M., Orfanos, S. E., Kotanidou, A., Daganou, M., Kyriakopoulou, M., Koulouris, N. G., & Rovina, N. (2016). Respiratory mechanics in brain injury: A review. World journal of critical care medicine, 5(1), 65–73. https://doi.org/10.5492/wjccm.v5.i1.65
[iv] American Thoracic Society. (2016) Living with a Tracheostomy. https://www.thoracic.org/patients/patient-resources/resources/tracheostomy-in-adults-2.pdf
[vi] Kuluski, K., Ho, J. W., Hans, P. K., & Nelson, M. L. (2017). Community care for people with complex care needs: bridging the gap between health and social care. International journal of integrated care, 17(4).
[vii] Gregoretti, C., Navalesi, P., Ghannadian, S., Carlucci, A., & Pelosi, P. (2013). Choosing a ventilator for home mechanical ventilation.