What Is End-Stage COPD?
End-stage, or stage IV, COPD is the final stage of chronic obstructive pulmonary disease. Most people reach it after years of living with the disease and the lung damage it causes. As a result, your quality of life is low. You’ll have exacerbations, or flares, often – one of which could be fatal.
COPD is an ongoing lung disease that has no cure and worsens over time. It's estimated that 300 million people around the world live with COPD. There are four stages of the illness, ranging from mild to severe. Doctors grade the stages by how much your airflow is blocked. A simple test measures how much total air you can get in one deep breath, and also how hard you can breathe out.
How Long Can You Live With End-Stage COPD?
How long people live with end-stage COPD differs from person to person. It depends on things like:
- Your symptoms
- Your age
- Your overall health
- If you've smoked, and for how long
Experts have found that people with end-stage COPD live, on average, around 8 or 9 years less than those without the illness.
Prognosis for End-Stage COPD
COPD affects everyone differently. With proper treatment, you can slow down the progression of the disease and keep up your normal activities as long as possible. Exercise safely. Be on the lookout for -- and act on -- warning signs of an acute flare, or exacerbation. Things that play a role in how well you’ll do include:
- How severe your COPD is
- Low body mass index
- Frequent acute flares
If you go to the hospital, your short-term outlook depends more on how severe the flare is than how severe your COPD is. In the long run, though, the severity of your COPD is what matters, along with related conditions like lung cancer, cardiovascular disease, sleep apnea, metabolic syndrome, and diabetes, among others.
Symptoms of End-Stage COPD
Many of the symptoms you had in earlier stages, like coughing, mucus, shortness of breath, and tiredness, are likely to get worse.
Just breathing takes a lot of effort. You might feel out of breath without doing much of anything. Flare-ups may happen more often, and they tend to be more severe.
You may also get a condition called chronic respiratory failure. This is when not enough oxygen moves from your lungs into your blood, or when your lungs don't take enough carbon dioxide out of your blood. Sometimes, both happen.
Other symptoms of end-stage COPD include:
- Crackling sound as you start to breathe in
- Barrel chest
- Constant wheezing
- Being out of breath for a very long time
- Irregular heartbeat
- Fast resting heartbeat
- Weight loss
- High blood pressure in the artery that goes from the heart to the lungs (pulmonary hypertension)
As with stage III, it gets harder to keep up with eating well and exercising, which boost your strength and energy levels. The more severe your COPD, the more likely you are to get infections.
Your doctor can’t say exactly how close you may be to dying. That’s because COPD follows its own path in each person. Still, signs that you’re nearing the end include:
- Breathlessness even at rest
- Cooking, getting dressed, and other daily tasks get more and more difficult
- Unplanned weight loss
- More emergency room visits and hospital stays
- Right-sided heart failure due to COPD
Stage IV COPD Diagnosis
To figure out if you’re in stage IV, your doctor will do a lung test called spirometry. It shows how well your lungs work. It measures:
- Forced vital capacity (FVC): The largest amount of air you can exhale forcefully after taking in as big a breath as you can.
- Forced expiratory volume (FEV1): How much air you can force from your lungs in 1 second.
In healthy adults, the FEV1/FVC ratio ranges between 70% and 80%. A percentage less than 70% means your airflow is limited and you could have COPD. Your age, gender, height, and ethnicity can all affect FEV1.
You’re in stage IV when:
- FEV1/ FVC is less than 70%
- FEV1 is less than 30%
Your doctor may also check for chronic respiratory failure with these:
- Arterial blood gas test: This checks the oxygen and carbon dioxide levels in your blood.
- Pulse oximetry test: A small sensor on your finger or ear tells you how much oxygen you have in your blood.
End-Stage COPD Treatments
Your doctor will use the same treatments from earlier stages, though you may need different doses, combinations, or need some of them more often:
- Short-term and long-term bronchodilators. These medicines help relax your airway muscles for easier breathing. They can work quickly (short term) or more slowly (long term) for hours of relief.
- Steroids. These drugs work inside your airways to ease inflammation and swelling and to stop your body from making mucus.
- Antibiotics. If you're having a COPD flare-up, especially from a virus or bacteria, your doctor could prescribe an antibiotic.
- Pulmonary rehab plan. These programs, offered in small groups, combine exercise, education, support, and counseling to help you manage COPD.
- Nutritional counseling. You'll meet with a registered dietitian nutritionist (RDN) to learn more about which foods you should eat and those you should avoid for better breathing.
- Supplemental oxygen. This treatment boosts your lung's oxygen levels. Your doctor will help you figure out if oxygen therapy is right for you.
- Opiates. Your doctor may prescribe these drugs to treat pain, insomnia, depression, and anxiety.
- Noninvasive positive pressure ventilation (NIPPV). This treatment helps you breathe better using noninvasive methods like a face mask.
Surgery may be an option. You'd get it only if drugs don't work for you. And even then, it only helps a small number of people.
There are a few types:
Bullectomy. COPD can make the tiny air sacs in your lungs get much larger. When that happens, doctors call them bullae. It's not too common, but they can grow big enough to get in the way of your breathing. A surgeon removes them to help you breathe more easily.
Lung volume reduction surgery. Some people with emphysema have greater air sac damage in the upper portions of both lungs and healthier air sacs in the bottom portions. In these people, this operation is done to remove the upper part of the lungs, to improve breathing and quality of life. To get it, you need to have a strong heart and enough healthy lung tissue. You also need to quit smoking and show that you can stick to your pulmonary rehab plan.
Endobronchial valve volume reduction. This surgery is for some people with breathlessness from severe emphysema. Three to four tiny valves are placed in your airways to block off the parts of your lung that don't work.
Lung transplant. This is when you get a healthy lung from a donor. It has serious risks. For instance, your body may reject the new lung. Doctors typically suggest this surgery only for people who have a lot of lung damage and no other health problems.
Coping With End-Stage COPD
Here are some lifestyle changes you can make to manage COPD:
- Stop smoking. The chemicals in cigarettes and other smoking products can make your COPD and breathing worse. Talk to your doctor about ways to quit smoking.
- Breathing techniques. Your doctor or respiratory therapist can help you learn ways to control your breathing, including different positions and ways to save your energy and relax when you have trouble breathing.
- Get rid of mucus. Mucus builds up in your airways when you have COPD, and you may have a hard time clearing it. Try drinking lots of water, using a humidifier, and coughing in a controlled way.
- Exercise. Working out regularly can help build up your strength, breathing muscles, and endurance. Make sure to talk to your doctor before starting an exercise routine.
- Diet. Staying at the proper weight and eating healthy foods are key to keeping your strength with COPD.
- Avoid smoke and air pollution. Secondhand smoke and air pollution can damage your lungs even more. Avoid them when you can and check air quality forecasts.
- Keep regular appointments with your doctor. They'll need to track your lung health, so keep all appointments even if you feel OK and let them know if your symptoms get worse.
- Get vaccinated: Stay up-to-date on vaccines for respiratory infections like the flu, COVID-19, and pneumonia.
End-Stage COPD and Hospice
You may want to talk to your doctor about palliative care (also called supportive care), which focuses on quality of life, keeping you comfortable, easing any pain or other symptoms, and assisting you and your family during your illness. It includes social and emotional support as well as your physical health. Palliative care also helps all the members of your medical team stay in the loop about your care. You work with a team of doctors, nurses, and social workers to:
- Set goals for what you want from your care
- Help you make medical decisions based on those goals
- Get support for your body, mind, and emotions, such as doing breath exercises and dealing with anxiety
- Address the needs of your family members and caregivers
You can get palliative care at any stage. You may want to consider it when your pain is too much, breathing gets labored, or you often end up in the hospital or the ER. Ask your doctor for a palliative care referral.
Hospice is a type of palliative care for people who have 6 months or less to live. Hospice manages every aspect of end-stage COPD and can be provided at the hospital, in an assisted living center, or your own home. Exactly what you’ll need and for how long isn’t always easy to predict, but some common things that hospice can help with include:
- Make an emergency plan for when you can’t breathe
- Guide you through power of attorney, living will, and other legal and medical documents
- Manage pain and other symptoms.
- Oversee all equipment, supplies, and medications, including oxygen
- Provide around-the-clock support
- Help you dress, bathe, and eat
- Offer emotional and spiritual support for you and those close to you
Your doctor may gauge whether hospice is right for you with an end-of-life screening tool and by measuring certain criteria you have to meet, such as:
- Disability from breathing problems
- Repeated medical or hospital visits for lung infections or respiratory failure
- Low levels of oxygen or high levels of carbon dioxide in your blood
- Right-sided heart failure related to COPD
Another sign you may be ready for hospice is if you don’t want a breathing tube in order to save your life.
How to Plan for the End
You may feel uncomfortable talking about your death with loved ones. But the conversations may help put everyone’s minds at ease. They also give you a chance to take care of practical matters. Some important questions to discuss include:
Where do you want to spend your final days? Most people want to die at home, but 80% do so in a hospital or nursing home. Consider if you’d want hospice at home. If so, let your family know. Hospice also can help survivors come to terms with their loss when you’re gone.
Do you want life-saving measures? If you collapse at home, do you want emergency medical workers to resuscitate you? Do you want to be on a ventilator if you can’t breathe on your own? An advance directive is a legal document that lists your wishes. It:
- Names a health care power of attorney to make decisions if you can’t speak for yourself
- Includes a living will that states your wishes for your power of attorney to follow
Is your will up to date? It’s a good idea to check your will if you haven’t for a while. Or write one if you don’t have one. If you need help, talk to a trusted friend, estate planner, or a lawyer who knows the laws in your state.
What kind of funeral, if any, would you like? Don’t assume that your family knows your wishes for your final arrangements.
Tips for Caregivers
As your loved one nears death, you may notice changes in their physical and mental health. They may sleep more, or talk less and less. Other changes may include:
Trouble eating. Breathlessness and other symptoms can make it hard to swallow. Serve smaller meals and snacks, and check that they’ve swallowed before offering another bite.
Your loved one may stop eating and drinking altogether in the days right before death. This is natural, since their body doesn’t need the energy.
Soiling the bed. Muscles that control the bowel and bladder weaken. Your loved one may wet or soil themselves. Ask if they want to use an adult diaper or ask if a catheter can be inserted to drain urine.
Agitation. Semiconscious dying people can get confused and restless. They may cry out or even try to remove tubes and other medical devices. Medications like morphine may calm them down.
Bruising. As the body slows down, blood may pool and look like dark purple bruises.
Breathing changes. You may notice pauses between breaths or hear a noisy sound when your loved one breathes. This “death rattle” happens if mucus or saliva builds in the back of the throat. The sound may be startling, but doctors don’t believe it causes discomfort.
Here are some things that can help ease your loved one’s final days:
Moisten their lips and mouth. Dip a mouth swab into water to help with dryness. These look like tiny sponges attached to a lollipop stick. Use a nonpetroleum-based lip balm to lock in moisture.
Ask what makes them feel better. For instance, gently move their arms and legs to make them more comfortable.
Create a soothing atmosphere. Dim the lights or safely light candles.
It’s believed hearing is the last sense to go before death. So treat them as if they can hear you even if they don’t respond.
- Gently hold their hand and read a favorite poem or religious passage.
- Play some music they love.
- Remind them of funny or touching family memories.
You probably will be emotional when your loved one passes. You may feel angry, sad, or numb. You might be happy they’re now at peace. Grief is a natural process that takes time. Support groups, grief counselors, and even close friends can make the journey a little easier.