Question:

Like many others I see here, I have come online to try & get some answers about a family members emphysema. It saddens me that so many people are confused & don,t know what stage they are dealing with … there is definatly a lack of communication between our Dr,s passing on the information. I too have a Uncle suffering & am so confused at what we are dealing with. We all think he is close to the end as he can hardly move, is distressed with his breathing, has times of confusion & can have days that he can,t remember at all.He never wants to eat & certain foods (mainly diary) make his stomach blow up like a pregnant woman. He is on most of the medications I have read in here, yet his oxygen in his blood is ok, heart ok & even though he is on oxygen, dr,s say he doesn,t need to be. Then today was told he should go to a home & there was nothing more they could do. In the next breath was told to walk around his garden (which he just can,t do).Yet he doesn,t need oxygen according to his blood levels?? He also has asbestosis. Familys are not after a date of death they just need to know where in the scale & medical life expectancy of the disease they are at so they can prepare & care for their loved ones. This is not directed at you, I understand that a medical judgement can not be made for someone not under your direct care. It can be frustrating, confusing & contradictive information and thats why we reach out to a site like this one. Thanks for putting up with me venting!

Answer:

COPD, including emphysema, can be a frustratingly difficult and very complex disease. This disease shows itself differently from patient to patient, depending upon many factors including:

• exactly what kinds of lung abnormalities there are,
• the extent of the lung damage, 
• the influence of other diseases, 
• the patient’s habits and general physical condition. 

It even depends upon how patients are “wired” neurologically and psychologically to respond to factors that might cause shortness of breath. 

Patients can sometimes suffer from very severe shortness of breath for reasons other than just having low oxygen in the blood. Sometimes the patient may sense too much acid in his body (that cannot easily be corrected by damaged lungs).  Sometimes he may sense that he has to “work too hard” to move air in and out of the lungs, (harder than what the brain may sense as “normal”).  Sometimes the patient may, over time, be afraid to do much of any physical activity because of his lung issues and come to develop weakness in the heart and other muscles. There are many other factors as well.

Emphysema, though very devastating, can be a long-term and gradual disease that slowly progresses over many years. Patients do decline over time, but making accurate predictions about the future progression of a disease from just big-picture observations, as you might imagine, is very tricky. It sometimes helps, though, to look at a group of factors that, taken together for one patient, may help to give a better idea of how quickly the effects of the disease are progressing.

One such combination for emphysema is called the BODE score, which combines four fairly easily-measured items:
 
1. The patient’s body mass index – a number calculated from the height and weight)
2. The amount of air the patient can blow out in a second
3. The patient’s level of shortness of breath determined by a common questionnaire
4. How far the patient can walk in 6 minutes
 
These 4 items result in a score that helps to estimate how likely it would be for the patient to survive for a particular amount of time.
Of course, tools such as these give only a general idea of the stage of illness, and as I mentioned, every patient is different. Perhaps the most helpful measures though, are those that you have already mentioned: things you may notice about yourself as a patient or about a loved one that may have worsened over time, and things that, using common sense, would suggest the patient is doing worse, such as:

• struggling with breathing or appearing short of breath,
• eating less,
• losing weight,
• cutting back on movement and activities,
• having trouble with thinking/memory as you’ve observed with your uncle.

While we would all wish otherwise, sadly, doctors sometimes do not routinely mention the overall health picture for a patient or bring up issues related to end-of-life concerns unless they are asked. Many people, physicians and otherwise, do not find the topic of aging and death particularly pleasant and thus tend to avoid it when given the chance.

The physician may be focused on only one or two aspects of a patient’s medical condition and not consider themselves involved in the “big picture.” The doctor may not want to appear “negative” by bringing up an unpopular subject. He or she may view having such discussions as an admission of “failure.” (It is sad, but still true sometimes.)

Practically, visit times are short and may not seem to allow enough time for an adequate discussion. And the physician may wrongly assume that everyone “already knows” how things are progressing and that, because no one mentions it, no one must want to talk about it.

On the other hand, the patient and his family may truly not realize or accept how the patient’s condition is progressing over time. Patients may not report all of the symptoms they are having, or they may not know which of many are most important. Sometimes information does not come back accurately from physician visits because of a lack of understanding or not knowing which questions should be asked.

These are several reasons why there are now many physicians who specialize in the area of Palliative Care and Symptom management. These physicians and their teams work with physicians who care for patients with very advanced diseases. They also help with communication; assuring that symptoms are managed, that concerns are addressed; and generally anticipating and planning for the progression of disease.

Regardless, there is no substitute for developing a good and comfortable relationship with one’s physicians. It is important to try and build a relationship where the communication is respectful, honest, and complete, where both patient/family and physicians are open to any question and each question deserves a truthful and satisfactory answer.

If you feel that you have not been brought to fully understand your health situation (or that of a loved one who has asked you to be involved—especially if you may have to help with decisions if that person’s health deteriorates), I would make the following suggestions:

• If you feel that your concerns are beyond what may be covered in a “normal” physician visit, ask if you can schedule extra time or time outside of the doctor’s busy appt schedule. Before the visit, try to:

  1. Solidify what you know of the underlying health condition(s)—and identify what you feel you don’t yet know.

  2. List concerns you have (overall deterioration, symptoms you’ve noticed, etc.)

  3. Think of specific questions you have about the health condition(s), about available treatments, about prognosis, and about how symptoms and the progression of the disease should be managed. (Examples: Can he expect any pain? Will the shortness of breath get worse? If it does, what can we do? Are there any other treatments? Will he be able to continue living on his own? )

  4. Finally, assure that you have a good idea of what you want to get out of the visit/discussion. Then, when the opportunity comes, ask all the questions you need to until you understand the answers and the implications.

• Communicate within the family or have all concerned members of the family present for such discussions.
• If your doctor cannot, will not, or does not answer to your satisfaction, seek another professional who will.

For more information:

Go to the COPD (Chronic Obstructive Pulmonary Disease) health topic.