He'd Been Hospitalized Six Times for Bad COPD -- But He Still Didn't Know What to Expect

Last updated: March 11, 2010

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.

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12 Comments So Far. Add Your Wisdom.

10 months ago

I a copd patient whant to learn caring .com is good keep me posted Thanks

almost 2 years ago

There is a study mentioned in the article, but there is mention of the name of the study, or a link to find the study. Please provide the study information.

over 3 years ago

I agree it is very difficult to find information on copd; my husband is in last stage. He has been for at least 2 years now. One Dr. told us he probably wouldn't live 5 years,,, that was over 3 years ago. He suffers daily and I am his caregiver. He has been hospitalized several times, but never in ICU...yet. He did have pneumonia once. Now he has a "lesion" in one lung and they think it may be a cancer. He has become quite depressed lately, with good reason. I can't get him to go anywhere except to his Dr. appts. now. He won't even come to the table to eat; I take his meals to his recliner. I spoil him, but we've been married almost 57 years; what else can I do? He is down to only 119 lbs. now and can't seem to gain. I feel he will need hospice soon. The Dr. doesn't think he's ready; how will he know? This site is very comforting to me. We have 2 daughters who help some, but they live 250 miles away. All I can do is pray for him and take care of him...and love him. Thank you, all, for your information and caring. May God bless all copd caregivers!

over 4 years ago

I learned so much reading the above comments. Thank you. My husband has COPD for the last four years and he has had good days and hard days. We base our social life around the good days!!!!!! Just getting out of the house for short periods of time is a good thing. He gets frustrated when he has SOB (shortness of breath). He worked hard all his life sometimes 12 hours a day and enjoyed doing yard work and handy jobs around the house so not being able to do these things makes him frustrated and angry sometimes.

over 4 years ago

VictoryMoon, First let me extend warmest thoughts of care and concern to you as you deal with your Mother's condition. My dear, I am going through very difficult days with my Mother right now and I want you to know there are many others in the same situation who know what you are going through. I can't be there to hold your hand through this, but I can tell you that you are not alone in this. I know the feelings of helplessness, the fear, the frustrations you are dealing with. It is, sadly, common to experience the "brush off" from doctors when faced with COPD. The disease is still largely a mystery to the medical community. Yes, they can talk about the physical changes and offer drugs for symptoms. But, all too often, the patient and family do not feel their questions and concerns are being adequately answered. It is worth your effort to seek out a pulmonary specialist and don't be afraid to challenge anything you're told. If you don't feel satisfied with one doctor, go to another one. It happens all the time with COPD patients. Pulmonary rehabilitation is helpful if your Mother is willing to do the work. A pulmonary specialist can guide you there. I could go on and on, but I'll stop here and point you to this website that has a great deal of valuable information and is staffed and visited by COPD patients and their families. www.copd-international.com This is not the only source of information. An internet search will lead to many more informative sites. There are also sites specifically for caregivers of all illnesses, such as the one we're on now. My prayers and support are with you. Peace, Amy

over 4 years ago

Amy..Question..in your post, you mention issues that may arise with COPD.Where can I find info on those? My Mum has COPD and it seems she is suffering with some things like you mention, and yet, I cannot be sure. Her attitudes about things are so odd at times, and the Doc and such do not seem to hear me when I ask if these things might be realitve. Doc just keeps giving more meds, such as anti-depressants, and anti-anxiety pills. Counseling was prescribed, and she attended, until she realized why she was going, then she quit. She just stays inside, in her chair, has quit church, friends, like giving up. Any pointers will be helpful...Thanks!♥

over 4 years ago

If we are going to assume the role of caregivers, we must be aware of the realities of COPD. Do not mistake this illness for an inconvenience as the drug commercials portray it. COPD is a terminal illness and the end of it is not a pretty sight. Be prepared for psychotic breaks, hallucinations, fear, agitation and a whole host of other horrifying symptoms including such extreme shortness of breath that even one step is impossible. I've learned as my Mother's caregiver that a person preparing for death puts up one hell of a struggle. Don't be deluded into thinking it will be easy or that some magic medicine will make it all better. Let's be honest about this illness. It is taking a huge toll on our population. Yes, help is there. Medicines can make the patient more comfortable. Hospice professionals provide immense help. But in the end it is a very grim struggle for everyone concerned. And it can take a long long time to die.

over 4 years ago

Just reread my comment and please forgive all my errors. I am usually quite articulate!

over 4 years ago

I have been a COPD patient for approximately 10 years myself. I had pneumonia about 5 years ago and then about a year and a half I got double pneumonia and went into sepsis shock. I "came too" in ICU with the room completely filled with family and frients. I thought "well this is it", told my son it was alright I was ready. When I came to again there were only two of my children in the room and I remember thinking "I must be going to live they've gone back to the rules"! :). I have gotten off of oxygen except for when i do strenious stuff such as clean house. The shortness of breath is a pain. I have notice that when the end is getting close one starts losing weight - I must not be close cause I haven't started doing that. I also have third stage kidney disease and PAD so there's no telling what's going to get me. I have made peace, and although I don't want to die I'm not afraid to do so. I have the DNR and my children support my decision. We all have to go sometime so we have to remember to make the time we do have as good as possible. All hail hospice!!!!

over 4 years ago

Over a 25+ career as a dietitian who worked with many patients diagnosed with COPD, I learned much from each of them. One of the first patients I worked with said something I have never forgotten: "If it's a choice between breathing and eating..I will breathe. When you are chewing food you cannot breate". So many patients did not eat well and consequently their breathing was more difficult. Some recommendations: 1) Eat small, frequent meals 2) Stress protein...Your diaphragm is a muscle and requires protein. Choose tender meat, fish, milk(if you tolerate it), cheese,eggs and/or supplemental high protein beverages. 3) Fat is a very concentrated source of calories which you need because labored breating uses many calories...and it will spare protein for building and provide energy. Add margarine/butter, oil, cream to foods as much as possible. 4) Drink liquids as prescribed. 5) If you have problems with a dry mouth or a bad taste in your mouth try lemon italian ice to cleanse your mouth before meals or between bites of food. Hope these idea will help. My best wishes are with you.

Anonymous said over 4 years ago

Wow! Fantastic information. I work in long-term-care and also suffer COPD. The information I found for myself was so very generic it was almost laughable. I made the remark to my husband more than once "dying from COPD must be a deeply buried secret" as the information was so hard to come by. What I did find was written 25 years ago and seemed to have no inclusions of the drug therapy available today. I have watched many patients expire from COPD. It takes many twists and turns along the way but the last months of life usually end up being the same. And as most of the population, I wanted to be different and expire another way with maybe some wonder drug invented to save the day. No such luck! Your article gave me all the information I have ever wanted in one place. I thank you so much for this.

over 4 years ago

My husband was diagnosed with COPD over 10 years ago. He has also been on oxygen for all of that 10 years. His doctor told him he probably would not live past the weekend. He also had a DNR and wished to die at home. They were shocked to see him come into his Monday morning appointment after having spent two days in the hospital. As of yet he has not had any major problems. I know death is looming out there some where. It is something neither he or I dwell on. We are too busy living life. I don't want to give anyone false hope, but I do believe it is very difficult for a doctor to predict quantity of life. This is why as caregivers we should help give quality of life to our loved ones no matter how long they have been told they will be here with us.

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