The case: What should someone expect when living with bad COPD?
Mr. A sat leaning forward on the edge of his hospital bed, nervously twisting his long thin hands. Despite the oxygen he always wore under his nose, this 64-year-old was so short of breath that it was hard for him to complete long sentences. Even so, he seemed eager to talk.
I was staffing the hospital's Palliative Care Service. Mr. A had been admitted the day before for worsening of his COPD, but this time it didn't look like he was sick enough to have to go to the Intensive Care Unit (ICU). Still, this was his sixth hospitalization in two years. "I know I have this incurable disease that will make me short of breath for the rest of my life," said Mr. A. "But what will actually happen to me?"
The challenge: An incurable disease that can feel as difficult as cancer but is often harder to talk about
More than 12 million Americans suffer from COPD (sometimes called emphysema), a chronic condition in which the lungs slowly lose their ability to effectively move oxygen into the blood. Often, COPD is caused by damage from smoking but not always.
In early COPD, a person may only notice shortness of breath when he exercises or otherwise exerts himself. But even with the best care, the lungs slowly get worse at moving air in and out of the body. Eventually, in advanced (or Stage IV) COPD, people usually find themselves using several inhalers a day, wearing oxygen, and still feeling short of breath just crossing a room. If a cold or other trigger causes an exacerbation (also called a COPD flare), breathing can get so bad that a person has to go to the hospital, or even be put on a ventilator (breathing machine) for a while.
Needless to say, this becomes a very difficult disease to live with: One survey comparing people with Stage IV COPD to people with advanced lung cancer found that, on average, those with COPD had similar or even worse health-related quality-of-life scores.
It's no small wonder, then, that people living with advanced COPD tend to be anxious about what to expect.
Unfortunately, that's especially hard for most doctors to explain because advanced COPD tends to be much less predictable than advanced cancer. For instance, Mr. A wanted me to tell him how much longer he might live (a common concern for patients and families). The trouble is, it's more difficult for doctors to guess which COPD patients probably have six months or less to live than it is to make an educated guess about the prognosis for advanced cancer. (A six-month prognosis is required for hospice care, which can be a good option for some COPD patients.)
The solution: Probe for the facts about advanced COPD, including how death might happen
Still, there are some things we generally do know about the usual course for people with advanced COPD. Here are the ballpark statistics that I reviewed with Mr. A:
Acute flares and other medical problems often quickly land a person with COPD in the hospital or in the ICU. Studies have found that in-hospital death rates range between 4 percent and 30 percent overall, depending on the type of COPD patient in the study. Hospital death rates are much higher for those who are sick enough to go to the ICU: around 25 percent.
Death rates during the year after being hospitalized for COPD have been estimated at 30 percent to 40 percent. For those who survived the ICU, about 50 percent to 60 percent died within a year.
On the flip side, many people hospitalized for COPD go on to live at least two more years. Studies have found two-year survival rates of 50 percent to 60 percent, although two-year survival dropped to 42 percent for those who had needed ICU care.
People with COPD often die of other causes, although there's a good chance their death will be related to COPD. In one three-year study of more than 6,000 people with moderate-to-severe COPD, the overall death rate was almost 15 percent. Of the deaths, 35 percent involved a breathing problem, 27 percent were cardiovascular (meaning heart or stroke), 21 percent were cancer, and 18 percent were other or "unknown"; overall, 40 percent of deaths were related to COPD.
Sudden death, which usually means a quick and fatal collapse, isn't uncommon in COPD. In the study above, 16 percent of the deaths were sudden deaths.
In other words, especially if the COPD is bad enough to cause hospitalization for an acute flare, there's some chance of dying in the hospital, and a fair chance of dying during the year afterward. But it's very hard to know which particular hospitalization is likely to be "the last one," and even after being sick enough for the ICU, the odds are four in ten that someone with bad COPD will live at least another two years. All this variability, plus the natural tendency toward discomfort with talking about death, means that often no one talks to COPD patients (or their families) about what to expect until a real crisis is at hand. This can mean that important issues about how a person might prefer to live and die aren't addressed until he can't weigh in. It's too late for that once a loved one is on a breathing machine and not getting better, which unfortunately is how many people with COPD die.
Fortunately, palliative care providers, who usually have the time and training to help people discuss these difficult topics, are now becoming more widely available. Through conversations with our Palliative Care Service, Mr. A was able to review the overall picture of his health. This helped him have a better understanding of his care options, including the possibility of transitioning to hospice care at some point.
Mr. A also decided that given his overall poor health, if his heart stopped, he'd prefer to not have CPR (this is called being DNR, or "do-not-resuscitate"), although he still wanted to be treated with the breathing machine during bad COPD flares. To document his preferences, our social worker helped him revise his [advance health care directive] (https://www.caring.com/articles/health-directives-and-living-wills). Mr. A then discussed his new thoughts in detail with his daughter, who lives out-of-state.
"I wish I didn't have to live this way," he confided to me. "It's so hard to know that I could die at any point. But now I feel a little bit better prepared."
My prescription for caregivers of people with advanced COPD:
Expect your loved one to live with chronic shortness of breath and disability, and to experience occasional medical crises due to flare-ups or other urgent medical problems. Know that each crisis is potentially life-threatening.
Remember that even in advanced COPD, continuing good treatment with medicine and other therapies is essential to minimizing shortness of breath and maximizing quality of life.
Prepare for life-threatening crises by asking the doctor or other professionals to help address advance care planning. Advance health care directives should be regularly reviewed, since people often change their preferences as their health situation evolves.
Consider asking for a palliative care consultation, which is not the same as asking for hospice care. Palliative care helps address the management of physical and emotional suffering at any stage of illness or treatment. Given that COPD is such a difficult disease to live with, many experts now recommend making palliative care available to people with COPD. Geriatricians, many of whom have received some palliative care training, can also be helpful.