What not to say to end stage COPDers

Sort of a touchy subject for physicians is dealing with end of life issues. We respiratory therapists see this quite often, particularly when it comes to end stage COPD.  We have patients who are at the extremes of the limits of what medicine can offer them.  While we have to somehow manage to help them keep up their spirits and live somewhat normal lives, we also have to be honest with them. 

This subject was recently brought up at the COPD.net facebook page when a patient wrote: 

"I'm a 66 yo just had my Dr tell me there is nothing else I can do or take to improve or even stay where I am. Working that through before my next lung evaluation in 2 weeks."

A similar comment I once heard was:

"You have two weeks to live." 

Another similar comment was:

"If you go home you're gonna die."  

Now, how does a physician know when a patient is going to die?  Surely you don't want patients thinking they are going to miraculously get better. Still, you don't want to deflate all  hope either.

In fact, the last time I heard a physician tell a patient with end stage COPD that he only had a few weeks to live, that patient went on to live two a few more years. Surely he lived within the limits of COPD, but he was still able to do things.

The patient who was told by one doctor he was going to die if he went home became very confused and depressed.  This only added to his problems.  I assured him that if he is a gallant COPD patient, takes all his medicine exactly as prescribed, wears his oxygen 24-hours-seven-days a week, and wears his BiPAP at night, that he has a very good chance of gaining a few more quality years.

This seemed to cheer up this patient.  The next day I worked he was breathing so much better that he was euphoric.  He was back to enjoying Westerns and telling jokes that made us all laugh.  He was breathing a whole lot better and feeling alive again.

The patient who was told there was nothing else he could do was advised by us COPD.net moderators to seek a second opinion, preferably that of a pulmonologist.  He has since informed us that this is exactly what he expects to do at his next appointment.

As healthcare providers, we must be aware that we are caring for people, not just objects on assembly lines. We must be honest with our patients, but not in a way that deflates their will to live.

People with end stage COPD now living longer

The natural progression of Chronic Obstructive Pulmonary Disease will eventually lead to heart failure.  When this happens the disease is considered to be in its end stages.  Good news here is that, while the prognosis is still quite poor, it has now been extended from two years to four hears, according to a study reported on in 2013 by the American Heart Association.  

Sometimes heart failure is caused by the aging process, simply by the it getting weak with age.  However, often it is secondary  to to the heart working too hard to pump blood through diseased lungs.  Patients with cystic fibrosis, bronchiectasis, and chronic obstructive pulmonary disease (COPD) are some of the lung diseases that may lead to heart failure. 

When heart failure is secondary to pulmonary disease, this usually begins by the right heart becoming enlarged (hypertrophic) from years of working too hard.  It then becomes an inefficient pump.  This is called cor pulmonale. 

Cor pulmonale may eventually lead to left heart failure, whereby the heart fails to meat the demands of the body.  Venous return to the heart increases, leading to blood becoming backed up in the legs, ankles, and lungs.  When blood backs up in the lungs this is called pulmonary edema.  It's also referred to as acute heart failure, or congested heart failure. 

There is no cure for heart failure, although the symptoms can be treated.  There are medicines to strengthen the force and contractility of the heart, and medicines to help remove the fluid from the lungs and ankles.  Acute heart failure may also be treated with noninvasive ventilation to reduce venous return and reduce cardiac output and blood pressure.  

Generally speaking, when patients with COPD develop heart failure it is considered end stage COPD.  This is where the patient will need to be monitored closely by a physician, and may require frequent physician and hospital visits in order to treat flare ups.  

At this point, flare ups may be caused by exposure to COPD triggers such as strong smells and cigarette smoke, but they may also be caused by heart failure. This is when treating the disease becomes difficult

Usually, patients with lung diseases develop atrial fibrilation prior to heart failure, so this may be a sign that it's time to consider heart failure.