This series takes a detailed look at the domains of the Decision Support Tool (DST). This week we continue our examination of the Breathing domain, analysing the descriptors for a ‘High’, ‘Severe’ and ‘Priority’ level of need.
Don’t miss parts one and two of this series:
Get Help Breaking Down the Decision Support Tool: An Overview
Get Help Breaking Down the Decision Support Tool: Breathing Part 1
Last time, we looked at the first three descriptors in the Breathing domain – ‘No Needs’, ‘Low’ and ‘Moderate’ – which are by far the most common. This week we examine the ‘High’, ‘Severe’ and ‘Priority’ levels of need.
IMPORTANT – The Decision Support Tool provides the following guidance to the MDT when assessing needs in this domain: Breathing is one of only three domains in which a person can “score” all six levels of need: No Needs’, ‘Low’, ‘Moderate’, ‘High’, ‘Severe’, ‘Priority’. The vast majority of people who are assessed for CHC funding will have needs falling under one of the first three descriptors. As we look closer at the descriptors for a ‘High’, ‘Severe’ and ‘Priority’ level of need, the reasons for that will become clearer.
The following clinical factors are relevant to the assessment of high, severe or priority level needs in this domain:
- Severe shortness of breath (SOB), breathlessness or difficulty in breathing (DIB).
- Is this a chronic (long term) or acute (short term) condition?
- Consider diagnosis of heart/circulatory problems, COPD/COAD, emphysema, pulmonary embolism, pulmonary fibrosis, sleep apnoea, asthma, bronchitis, pneumonia, tracheostomy, spinal injury, motor neurone disease, or any other condition that might impact on breathing.
- Medication prescribed and route of delivery: steroids, inhalers, nebulisers, oxygen.
- Is the prescribed treatment effective, i.e., does it relieve symptoms of breathlessness?
- Is medication prescribed routinely (at the same time each day) or as-required (PRN)?
- Can the person communicate symptoms of breathlessness, or does this require anticipation?
- Is there a need for mechanical ventilation?
- Is this non-invasive (e.g. via nasal or facial mask) or invasive (e.g. via tracheotomy)?
- What is the mode of ventilation –e.g., BiPAP (Biphashic Positive Airway Pressure) or CPAP (continuous Positive Airway Pressure)?
- Does shortness of breath occur on exertion or at rest?
- Does shortness of breath impact on other domains, e.g., mobility, nutrition, medication, communication? (“Daily living activities”)
- Can the person cough and expectorate secretions effectively?
- Is there a need for suctioning?
NOTE – While both BiPAP and CPAP are modes of mechanical ventilation, the risks associated with BiPAP are far greater. Someone using a CPAP machine triggers the breath spontaneously and that breath is then supported by positive pressure from the vent (to open the lungs more fully). An individual using a BiPAP machine is dependent on the ventilator to trigger and deliver the breath. This helps us to understand why the assessed level of need for a BiPAP machine (severe) is considerably higher than that for a CPAP ventilator (moderate). The level of need reflects the risk to the individual should complications arise/needs not be met.
Now that we’ve outlined the type of things the MDT will be considering in this domain, let’s take a look at the descriptors for the levels of need. For each descriptor, we provide a case study to give you a better understanding of how the levels of need might be applied at your relative’s assessment.
IMPORTANT – Don’t forget to consider how breathing problems impact on daily living activities, as this will significantly affect the assessed level of need:
- Eating
- Drinking
- Moving around (including manual handling, e.g. repositioning)
- Going to the toilet
- Talking/communicating
- Mood
Those with ‘No Needs’,’ Low’ or ‘Moderate’ levels of need in this domain will suffer no, low or moderate impact on some of their daily living activities. An individual with a ‘High’, ‘Severe’ or ‘Priority’ level of need will see ALL of their daily living activities affected, to a significant or severe degree.
HIGH
| Is able to breathe independently through a tracheotomy that they can manage themselves, or with the support of carers or care workers.
OR Breathlessness due to a condition which is not responding to treatment and limits all daily living activities |
| Key Factors
Non-problematic tracheotomy; self-caring with minimal assistance Episodes of breathlessness, which are not responsive to rest/medication All daily living activities affected (mobilising, eating/drinking/communicating) |
CASE STUDY 1 – HIGH
Mr. X required a tracheotomy after suffering laryngeal cancer three years ago. He reports no concerns or complications at this time and is largely self-caring. Mr. X is fully cognisant and is aware of the risks associated with his tracheotomy. However, Mr. X does require assistance in caring for his tracheotomy as he is losing dexterity.
Mr. X is able to cough effectively and is usually able to manage any excess secretions himself using a flexible suction catheter. He may sometimes require assistance from staff due to losing dexterity, and will call for help using his buzzer when required. Staff need to help him to clean the tracheotomy tube several times each day to ensure it remains free of blood and mucus. The inner tube needs to be changed regularly and routine suction is required during changes (remove inner tube, suction, insert clean inner tube).
A dry dressing is applied around the tracheotomy site to ensure cleanliness. Mr. X prefers to wear a scarf when he goes into the garden and likes staff to remind him of this.
Mr. X presents with a ‘HIGH’ level of need as he is able to breathe independently through a tracheotomy that he can manage himself, or with the support of carers or care workers.
CASE STUDY 2 – HIGH
Mrs. X suffers from COAD (chronic obstructive airway disease) and pulmonary hypertension. She is short of breath at rest and on any exertion.
Mrs. X is prescribed continuous oxygen at the rate of 1 litre per minute to assist her breathing and maintain oxygen saturation levels. Mrs. X is also prescribed Tiotropium Bromide inhaler 1 dose daily.
Mrs. X gets breathless when she is speaking, when she moves around and when she is eating. Mrs. X is unable to mobilise independently due to breathlessness and uses a wheelchair to move around the home. Staff need to make sure she is positioned in an upright position at all times to assist her breathing.
Mrs. X is able to express her needs and so can alert staff to any discomfort or exacerbations of her condition. However, breathlessness can impact on her ability to speak clearly and in full sentences at times.
Mrs. X may benefit from a review of her condition by the Respiratory Team. It would appear her symptoms are not currently well-managed and that her activities of daily living are increasingly affected.
Mrs. X presents with a ‘HIGH’ level of need as she suffers breathlessness due to a condition which is not responding to treatment and limits all daily living activities.
SEVERE
| Difficulty in breathing, even through a tracheotomy, which requires suction to maintain airway.
OR Demonstrates severe breathing difficulties at rest, in spite of maximum medical therapy. OR A condition that requires management by a non-invasive device to both stimulate and maintain breathing (bi-level positive airway pressure, or non-invasive ventilation). |
| Key Factors
Problematic tracheotomy requiring skilled intervention Breathless at rest, unresponsive to all treatment Inhaler and/or nebuliser and/or oxygen therapy not effective All daily living activities severely affected Non-invasive (e.g., via-facial mask) mechanical ventilation required (e.g. BiPAP) |
CASE STUDY 1 – SEVERE
Mr. X required a tracheotomy after suffering laryngeal cancer three years ago. Mr. X is fully cognisant and is aware of the risks associated with his tracheotomy. However, Mr. X does require assistance in caring for his tracheotomy as he is losing dexterity.
Mr. X experiences copious secretions, worsened by increased immobility and a recent chest infection. He is able to cough, but this is not sufficient to clear secretions and he is at high risk of occlusion. Suction is performed by trained staff using a flexible suction catheter on an as-required basis. Mr. X is able to alert staff to any difficulties using the Nurse Call system but does need care to be delivered immediately and unpredictably.
Staff clean the tracheotomy tube several times each day to ensure it remains free of blood and mucus. The inner tube needs to be changed regularly and routine suction is required during changes (remove inner tube, suction, insert clean inner tube).
A dry dressing is applied around the tracheotomy site to ensure cleanliness.
Mr. X presents with a ‘SEVERE’ level of need as he has difficulty in breathing, even through a tracheotomy, which requires suction to maintain airway.
NOTE – The difference between the ‘HIGH’ and ‘SEVERE’ levels of need arises from the type and frequency of intervention required. While our Mr. X with a ‘HIGH’ level of need was able to look after his tracheotomy with minimal assistance, this Mr. X requires much more intensive, skilled attention from staff, the need for which is unpredictable. Difficulty in managing secretions mean he is at risk of suffocating, should the tracheotomy tube become occluded. In addition to regular tracheotomy care and cleaning, he requires suction be performed on an as-required, but timely, basis.
CASE STUDY 2 – SEVERE
Mrs. X is diagnosed with COAD and type 2 respiratory failure. Her condition is chronic and has required numerous hospital admissions. Mrs. X is nearing the end-stage of the disease progression and has difficulty breathing all the time.
Mrs. X has a Nippy3 ventilator and settings are fixed by the Respiratory Team for non-invasive ventilation via mask from 22.00 to 06.00 and for 4 hours in afternoon. Oxygen is used whilst Mrs. X is on NIV (non-invasive ventilation), as she is now unable to maintain sufficient levels independently.
During the rest of her waking day, Mrs X has oxygen 3L per minute via nasal cannula from oxygen concentrator and is self-ventilating. This is the maximum flowrate that she is able to tolerate. Mrs. X is at risk of hypercapnia; her oxygen saturations are kept between 88 and 92% but low saturations do impact her activities of daily living.
Mrs. X now struggles to eat even small amounts of food and is nutritionally at risk. She cannot speak more than a few words before gasping for breath. She is nursed in bed in an upright position for maximum comfort. She requires regular assistance to change her position and is breathless during such interventions.
Mrs. X has been prescribed numerous inhalers, nebulisers, steroids and diuretics in an attempt to manage her condition. However, these now have limited effect and are only used to promote maximum comfort.
Mrs. X is understandably distressed and frightened by her condition and struggles to sleep for any length of time. She requires much TLC and reassurance from sympathetic staff.
Mrs. X presents with a ‘SEVERE’ level of need as she demonstrates severe breathing difficulties at rest, in spite of maximum medical therapy.
CASE STUDY 3 – SEVERE
Mrs. X is diagnosed with type 2 respiratory failure, COAD and OSA (Obstructive sleep apnoea)/OHS (Obesity Hyperventilation syndrome). Her condition is chronic and has required numerous hospital admissions. Mrs. X requires non-invasive mechanical ventilation overnight and for 2 hours during the day to maintain adequate oxygen levels and removal of Co2.
Mrs. X has a Nippy 3 ventilator and settings are fixed by the Respiratory Team for non-invasive ventilation via mask from 22.00 to 06.00 and for 3 hours in afternoon. Oxygen is not used whilst Mrs. X is on NIV (non-invasive ventilation).
During the rest of her waking day, Mrs X has oxygen 0.5L per minute via nasal cannula from oxygen concentrator and is self-ventilating.
Mrs. X has tolerated the non-invasive ventilation for a while but struggles to fix mask in place due to her osteoarthritis in her hands. This resulted in admissions to hospital and high dependency treatment. In the 24-hour care setting, Mrs. X is given assistance to place the mask appropriately overnight and maintain a good level of ventilation.
Mrs. X presents with a ‘SEVERE’ level of need as she has a condition that requires management by a non-invasive device to both stimulate and maintain breathing (bi-level positive airway pressure, or non-invasive ventilation).
NOTE – Mrs. X 2 and 3 would both meet the descriptor for a severe level of need in this domain. However, when we consider the Key Characteristics, Mrs. X 2 presents with significantly more complexity, intensity and unpredictability of need. Her daily living activities are more severely impacted by breathlessness and her condition is not responsive despite maximum intervention. Mrs. X 2 and 3 actually require the same type of treatment (non-invasive mechanical ventilation, oxygen therapy via nasal cannula), but the intensity of that treatment, and the demands on the care team, are quite different. This is a good example of why it’s important to consider which specific part of the descriptor is met and how the Key Characteristics are affected by the needs described, rather than relying on the fact of an “assessed level of need”.
PRIORITY
| Unable to breathe independently, requires invasive mechanical ventilation. |
| Key Factors
Requires invasive mechanical ventilation (e.g., via tracheotomy) 24-hour, skilled care, usually confined to an acute (hospital) setting Immediate and critical risk to life should needs not be met |
Mr. X has a complete C4/5 spinal cord injury, sustained in a road traffic accident five years ago. Following a period of rehabilitation at the Spinal Cord Injury Centre, Royal National Orthopaedic Hospital, Mr. X has made a remarkable recovery and now lives at home with a package of care.
Mr. X is tetraplegic, meaning he has no movement or sensation below the level of his injury. He is unable to move his torso, arms, hands, legs or feet.
Due to the nature of his injury, the nerve that activates Mr. X’s respiratory muscles has been severed and he is unable to breathe independently. He requires invasive mechanical ventilation via tracheotomy 24-hours a day. Mr. X uses a Nippy 3+ ventilator with settings fixed by the Respiratory Team. The Respiratory Team provides ongoing clinical support including regular monitoring of blood gases.
A second ventilator is always on site for back-up, and a generator is provided in case of mains electricity failure. Mr. X has not required oxygen therapy in the community.
Mr. X is unable to cough making the management of secretions imperative. He is at high risk of occlusion and consequent suffocation. Suction is performed by trained staff using a flexible suction catheter on an as-required basis. Mr. X is unable to alert staff to any difficulties and requires 1:1 skilled nursing care 24-hours a day.
Staff clean the tracheotomy tube several times each day to ensure it remains free of blood and mucus. The inner tube needs to be changed regularly and routine suction is required during changes (remove inner tube, suction, insert clean inner tube). This is a skilled procedure, requiring Mr. X to be disconnected from the ventilator for short periods.
Mr. X requires 24-hour skilled care, the nature of which is unusual outside an acute (hospital) environment. The use of invasive ventilation in a domiciliary setting requires expert staff, with the ability to troubleshoot issues with the equipment and the patient’s symptoms, and ongoing clinical support. The risk to Mr. X should complications occur are immediate and critical.
Mr. X presents with a ‘Priority ‘level of need as he is unable to breathe independently, requires invasive mechanical ventilation.
We hope this has given you a better understanding of the Breathing domain. Don’t miss the rest of this series over the coming weeks.
If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to contact one of our specialist Advice Lines to discuss your case today. If you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 Support page.
If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.
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