Making Decisions About Your COPD—What Happens if I Can't Breathe?

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Many people hope to make choices for themselves when it comes to medical decisions and treatment options.  Frequently, however, circumstances that are out of your control make it impossible to do so.  For example, sometimes patients may become unconscious, get mentally cloudy or confused, have an accident, or a stroke that makes them unable to communicate their wishes to others.

In fact, more often than not, end-of-life or major medical decisions are made by family members or loved ones, called a surrogate decision maker.

  When this happens, there is often a great deal of stress, anxiety, even depression that results for both patients and their loved ones who need to make important life and death decisions.

One way to lessen these problems is to think about how you might want your medical care to be handled if you are unable to decide for yourself, or unable to communicate your wishes with others.  This can be done through a process called advance care planning.  This process involves first thinking about your values, beliefs and preferences for medical care in advance of a medical crisis: second, talking about these values and your goals with family members, loved ones, and/or clinicians; and third, documenting your preferences in the form of an advance directive (such as a living will and/or healthcare power of attorney).

While all people may benefit from advance care planning, it is especially important for patients with chronic diseases, such as COPD.

  If you have COPD, it is extremely important to think about whether or not you would be willing to go on a breathing machine, either short-term or long-term or permanently. 

Thinking ahead can help you, your family and your healthcare providers to make a plan in the event that a COPD exacerbation occurs unexpectedly.

The following discussion takes you through some of the issues to think about when you need to answer a critical health question.

What Happens if I Can’t Breathe or Become Severely Short of Breath? 

When patients with COPD have severe shortness of breath, the first step is to try inhalers, nebulizers and steroids in hopes of controlling the symptoms.  Often, oxygen is provided by a small tube (called a nasal cannula) that is placed in the nostrils. If these simple steps do not resolve the problem, additional more intensive treatments might be indicated.

1) BiPAP:  One treatment is called a BiPAP. This is a tight fitting mask that covers the nose and mouth.  It helps patients breathe in oxygen more effectively and also helps patients efficiently exhale carbon dioxide (a toxin that builds up during a COPD exacerbation).  The mask is a good tool for short-term control of symptoms, but when its in place for a long period of time (over 24 hours) it can be very uncomfortable and cause ulcerations on the nose or face.

  The machine is noisy and the air pressure is so high that its very difficult and sometimes impossible to communicate while wearing the mask.

Whether or not to pursue a treatment such as this is a personal decision.  While most patients opt to try the mask for a short period of time, there are down sides that are worth considering.  If you are claustrophobic, this mask may make anxiety or panic occur.  You cannot swallow food or eat when using this kind of mask.  Patients using the mask for longer periods of time may feel isolated because they cannot speak or communicate effectively.  The up side is that most patients get some symptomatic relief and oxygen levels improve.  Weighing these risks with these benefits is important when deciding whether or not to pursue a therapy such as bipap. 

2) The ventilator:Should the bipap machine fail to control the symptoms, the next step might be mechanical ventilation or a breathing machine.  This involves sedation with medications (sometimes called an ‘artificial coma’ or ‘medically induced coma’) and then the placement of a tube down the throat, through the vocal cords, and down into the lungs.  The ventilator is then hooked up via the tube (called an endotracheal tube) and a machine inflates and deflates the lungs to ensure adequate oxygen gets in and the right amount of carbon dioxide is exhaled. The procedure is uncomfortable and most patients who are on a ventilator are unconscious, but pain free. The ventilator is a helpful tool to buy the physicians time to figure out what the medical cause of the symptoms are. Sometimes, the cause is reversible, but sometimes, it is not.  For patients with end-stage COPD, when the ventilator is needed because of a severe COPD exacerbation, there is a higher chance that the ventilator will be required long term.  This is the point where a decision needs to be made. 

Being on a ventilator long term comes with a lot of downsides.  There are risks of infection and pneumonia.  There is a risk of ulcerations in the mouth or throat.  There are risks associated with the medications needed to control the discomfort that come with a tube in the lungs, and there is frequently a need to be in a healthcare environment such as a hospital, nursing home, or ventilator facility.  Frequently, patients have challenges talking or communicating

3) Tracheostomy After a few weeks, the tube in the throat will need to be converted to a more permanent fixture in the neck, called a tracheostomy, or a ‘trach’.  While a trach is more comfortable, it also is a more permanent choice to receive mechanical ventilation.  The upside is that having the tube taken out of the mouth and placed into the neck allows patients to move their lips and sometimes even vocalize sound.  While tracheostomies are not always permanent, for patients with end-stage COPD they almost always are. Therefore, a decision to proceed with mechanical ventilation long-term bears consideration of whether or not you are willing to have the trach procedure, and adjust to living connected to a ventilator.

While many people say they would not want to live connected to a ventilator, there are many people who do just that and have satisfying and meaningful lives. While there are limitations in life, sometimes patients become well enough to sit up in a chair, read, watch television, visit with family, and even have brief periods disconnected from the ventilator.

So, how do you decide if you would accept mechanical ventilation and for how long? This is something that is a personal choice and requires reflection about life’s priorities and goals.  For example, if your goal is to meet your yet-unborn grandchild, then a tracheostomy can help you to achieve that goal. If your goal is to maintain freedom and independence, then a tracheostomy is less likely to live up to that expectation.  

The Bottom Line: Talk with your primary care provider and/or pulmonologist about their recommendations to help sort through the issues.  If nothing else, consider the following questions, and talk about them with your loved ones:

  • Who should make decisions for me if I can’t make them myself?
  • Am I willing to be placed on life support (a mechanical ventilator or breathing machine) for a short, trial period to see if physicians are able to improve my symptoms or treat me?
  • How long am I willing to be on a mechanical ventilator with the tube down my throat in an artificial coma?
  • Am I willing to receive a tracheostomy, which allows the tube to be removed but still means that I am dependent on a machine to breath?
  • What are my most important priorities?  Being pain free? Being awake and alert? Being able to eat or communicate? Being able to get out of bed? Being fully independent?  

Finally, think about your answers to the last question and talk with your doctors about the best options should an emergency arise.  And remember, planning in advance is better for everyone, even if it might not be pleasant to think about. 

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