FAQ

Que. When do PALS need a BiPAP?

Ans. As soon as shallow rapid breathing is noticed, especially when lying flat. 

Que. When do PALS need a feeding tube?

Ans. As long as PALS can swallow without coughing and it doesn't take too much time to eat, not having a feeding tube is fine. But otherwise, in case of coughing while eating/swallowing difficulty/slow chewing- a feeding tube should be placed, no matter what the doctor says/recommends.

Que. When do PALS need a Tracheostomy?

Ans. 

1. When PALS lose the ability to spit out/swallow cough/saliva to an extent that it leads to chest congestion/saliva seeping into the lungs causing visible respiratory distress, low saturation, frequent  pneumonia episodes and poor quality of life

2. Or, When PALS become dependent on BIPAP 24x7 and unable to tolerate the mask full-time, they may opt for a tracheostomy

Que. BiPAP or Oxygen or Both?

Ans.

(1) PALS with diaphragm weakness need BiPAP

(2) PALS with pneumonia (and no diaphragm weakness) need Oxygen

(3) PALS with diaphragm weakness and pneumonia need both BiPAP and Oxygen

(4) In an emergency when PALS develop pneumonia and are not sure whether or not diaphragm weakness exists, should use BiPAP & Oxygen both to be on the safe side. 

(5) Periodic evaluation of BiPAP settings is needed as with the progression, things may change.

Que. Does Tracheostomy mean being dependent on a ventilator full-time?

Ans. No.

Que. Determining whether to pursue a tracheostomy for an ALS patient 

Ans. Deciding whether to proceed with a tracheostomy for an ALS patient involves careful consideration and discussion with healthcare professionals, caregivers, and the patient themselves. Here are some key factors to consider:

1. Quality of Life: Assess the patient's current quality of life and their preferences. Discuss how a tracheostomy might impact their ability to communicate, eat, and interact with others.

2. Disease Progression: Understand the stage and progression of ALS. Tracheostomy is often considered when respiratory function declines significantly, impacting breathing and potentially leading to respiratory failure.

3. Medical Evaluation: Consult with healthcare providers, including neurologists and pulmonologists, to evaluate the patient's respiratory status. Consider factors such as lung function tests and the need for respiratory support.

4. Family and Caregiver Support: Assess the availability of caregiving support, as a tracheostomy requires ongoing care and management, including suctioning, tube care, and monitoring for complications.

5. Patient Wishes: Respect the patient's wishes and involve them in the decision-making process as much as possible, considering their autonomy and preferences regarding medical interventions.

6. Risks and Benefits: Understand the potential risks and benefits associated with a tracheostomy, including complications such as infection, discomfort, and the impact on quality of life.

7. Advance Directives: Review any advance directives or living wills that outline the patient's preferences for end-of-life care, including decisions related to life-sustaining treatments like tracheostomy.

Ultimately, the decision should be made collaboratively, taking into account medical advice, the patient's wishes, and the potential impact on their overall quality of life. It's essential to have open and honest discussions with healthcare professionals and loved ones to ensure the best possible decision for the ALS patient.