Chronic obstructive pulmonary disease (COPD) is a progressive illness. Although treatment can slow progression and help with symptoms, there isn’t a cure.
There’s generally a long functional decline through the four stages of COPD:
- Stage 1 is mild. You might not even be aware there’s a problem.
- Stage 2 is moderate. This is usually the point where you see a doctor for persistent respiratory symptoms.
- Stage 3 is severe. Shortness of breath gets worse, physical activity is difficult, and respiratory symptoms begin to affect quality of life.
- Stage 4 is end-stage. You have chronic respiratory failure, severe exacerbations, and difficulty carrying out everyday tasks.
Treatment during the end of life stage focuses on palliative care. As the end of life approaches, you’re likely to experience many physical and emotional changes.
It’s important that you talk with your doctor and loved ones during this time and alert them to any changes you may experience.
During this time, symptoms that were transient during earlier stages of COPD become constant. The primary symptom of end-stage COPD is shortness of breath. It’s not unusual to have some anxiety associated with breathing problems.
Other symptoms may include:
- frequent coughing accompanied by chest pain
- frequent infections and flares
- difficulty falling and staying asleep
- loss of appetite
- weight loss
- poor circulation, which can cause cold hands, arms, feet, and legs, plus blotchy skin
- growing weakness
- dependence on oxygen
COPD is progressive, leading symptoms to gradually worsen over time.
As you near end of life, your symptoms may present new challenges or concerns:
- Difficulty breathing can lead to major disability. You might find it difficult to climb stairs, get around your home, or tend to your own needs. Speaking may also become difficult.
- Dependency on oxygen and caregivers, plus social isolation, may lead to depression.
- Extreme weakness can make it hard for you to swallow.
- You’ll gradually feel weaker and more fatigued. Eventually, you’ll probably start sleeping for longer periods. You may have a hard time waking up.
This array of symptoms and physical changes can leave you feeling confused, disoriented, or agitated. It can even cause delirium.
COPD is a progressive terminal illness, so it makes sense to talk things over with your doctor. End of life treatment is about maintaining the best quality of life possible for as long as you can.
Here are some questions you should consider asking about end of life care:
- What medications might be able to ease symptoms?
- Should I use oxygen?
- What complementary therapies might be helpful?
- What in-home healthcare and hospice care services are available?
You may also want to discuss which treatment options you don’t want. If you’d rather avoid aggressive treatment or hospitalization, make sure your doctor and family understand this.
There are a variety of coping techniques that can help during this time. Everyone is different, so do what works for you. If you’re not getting what you want or need from one coping mechanism, try something else. Only you can gauge the value of a therapy.
You may wish to try:
Mind-body practices can relieve stress and help you relax. You can meditate with a partner, a group, or on your own.
Find a spot that offers few distractions and take any position you find comfortable. Some people choose a specific word or phrase to focus on. Others focus attention on an object, photo, or location. Turn off your inner censor and let your thoughts flow freely. There’s no down side to practicing relaxation techniques, so if it feels good, do it.
This is another way to relax. There’s some evidence to suggest that massage can help ease pain and reduce depression.
Reiki is based on the idea that the practitioner can channel energy through touch. Reiki is intended to reduce stress, help you relax, and promote healing. There isn’t much research to support its effectiveness, but there’s no indication that it’s harmful, either. What really matters is how it feels to you.
This involves applying varying amounts of pressure to specific points on your hands or feet to promote relaxation and healing. There’s some evidence that it may help with relaxation, and it’s generally safe.
Aromatherapy is the use of essential oils from plants as a calming agent and to improve overall well-being. These products don’t make specific health claims and don't need approval by the U.S. Food and Drug Administration.
Regulations on complementary and alternative therapies vary from state to state. To find a qualified practitioner, ask your doctor for a referral. Some therapies may be covered under your health insurance policy. Others most likely won’t. Check first so you’re not caught off guard.
Listening to soothing music or creating artwork, if you’re up to it, can also have therapeutic value.
There are a few things you can do to prepare for end-stage COPD:
Talk to your loved ones. End of life discussions can be difficult, but they can help you, and the people who care about you, to cope. Be frank with them and allow them to do the same.
Make home accommodations. If your bedroom is upstairs, move to a downstairs location. Or arrange to have a hospital bed delivered to your home. Get help rearranging things so you can move about easily. Keep items you use most often in an accessible location. Use a rolling walker or other assistive device to keep you from falling when up and about.
Enlist caregivers or nurses. In-home help will allow you to remain in your own home. They can assist with personal hygiene, tracking medications, and preparing meals. They can also share information with your doctor to help things go more smoothly.
Prepare for hospice services. It’s better to have the information at the ready than to wait until you need hospice services. Your doctor’s office should be able to steer you in the right direction. Keep the information on hand for your family or caregivers.
Make your wishes known. Make the crucial choices now so your family won’t have to later. Tell them what you want as far as end of life care. Do you want a DNR (do not resuscitate) order? Do you wish to avoid aggressive treatment or hospitalization?
These are difficult choices for loved ones to make. To ensure that your wishes are carried out, make some legal decisions now. Consider drafting a living will or giving power of attorney to someone you trust.
Caring for someone with end-stage COPD is a significant responsibility. A lot depends on their particular needs, as these can vary from person to person.
It’s important to respect the person’s wishes. Allow them to express their feelings without judgment.
There may come a time when they start to withdraw. This is perfectly natural. Stay with them, talk with them, read to them, listen to music together, but don’t try to force them to interact. Follow their lead.
How to help
- Keep an adequate supply of medications, and make sure they’re easily accessible. These may include pain meds, oxygen, and bronchodilators.
- Ask the person to describe their pain on a 0-10 scale so that you can accurately gauge their needs.
- Periodically ask if they’re comfortable or what they need to be more comfortable. This might be difficult for them to respond to, so be specific. For example, ask if they need another pillow, blanket, fan, or a change of clothing.
- Work with home health aids and hospice workers to ensure round-the-clock quality care. Use a shared note-keeping system so everyone involved has access to the same information.
- If your patient refuses to eat (even their favorite foods), don’t force it on them.
- Use a washcloth, cotton swab, or ice chips to keep their lips and mouth moistened.
- Consider adding a humidifier to the room to make breathing easier and keep skin moist.
- Help with relaxation techniques, such as meditation or music therapy, as needed.