My mother has end-stage COPD and recently, she was worrying herself sick wondering how she would know the end was approaching and what it would feel like. Just last week, I answered a similar question here on HealthCentral from someone wondering much the same. It’s a scary thought, dying from a respiratory disease that is already making you short of breath with the smallest effort. Are you going to slowly suffocate to death?
One of our other experts here, Dr. David Kaufman, recently wrote a post on Progression of Emphysema: How Do You Know It’s Near the End? It’s a great article and will help you understand the medical side of things, what is happening with the body. But I thought it might also be helpful to look at how it’s going to feel from the patient’s viewpoint.
What to Expect
First off, if you’re suffering these fears about “the end”, then talk with your doctor. Sure, it’s great to get information on the Web from reliable sources like this website, but it’s even better to talk to an expert who knows you, your medical history and your current condition. It can also be comforting to get the news from someone you feel a connnection with, and hopefully that’s your doctor.
My mom asked her doctor how she would know when she was getting close to her final days. Like many, she wanted some advance warning so that she could “take care of business.” It’s a fair question.
Her doctor was reassuring. She said that my mom would know, that it would be obvious that things were getting markedly worse. Besides getting ever more short of breath, she would be less able to do her daily activities, including getting dressed, bathing, walking around the house, and even eating. She also said it would not be necessary for my mom to feel as though she were getting to a point where she would just suffocate. All that seemed to soothe my mother’s fears.
But I found some other caregiver descriptions of the final days that you might find even more helpful. Most of them said that their loved one really slowed down, some even becoming bedbound, toward the end. Most stopped eating and some even stopped drinking. Mental confusion was also common, although often it came and went.
As Dr. Kaufman described, heart problems are often a complication of COPD and so sometimes the heart “gives out” before the respiratory system actually shuts down completely. Other people develop respiratory infections in their weakened airways that their bodies are not strong enough to fight off.
But not everyone will get those complications. In many, the lungs just keep deteriorating. At the very end, “air hunger” is also common, that desperate gasping for breath that doesn’t go away even with rest. But the good news is, that there is a really effective treatment for air hunger that can make those final days relatively comfortable and less stressful. And if you work with your doctor, it’s easy to get hold of too.
How to Deal with Things
When the end begins to approach, as agreed upon by you and your doctor, then talk with your doctor about getting support from a local hospice home care organization. This is a service, almost always covered by insurance (including Medicare), that is designed to help dying patients and their families.
Each hospice may operate a bit differently, but generally they provide nursing care, personal care, respite services, physician support and pain management. One of the drugs that’s used for pain, morphine, is also very effective in controlling air hunger. It relaxes the patient and helps breathing go easier. It can make the final days or hours much more comfortable and less scary.
Meditation and other relaxation techniques can also be useful, both for patients and their caregivers.
Thinking about death can be stressful, but if you work closely with your doctor and make use of the resources available, it doesn’t have to be terrifying, painful or a horrible experience. It can be relatively peaceful and pain-free.
Kathi is an experienced consumer health education writer, with a prior career in nursing that spanned more than 30 years — much of it in the field of home health care. Over the past 15 years, she’s been an avid contributor for a number of consumer health websites, specializing in asthma, allergy, and COPD. She writes not only as a healthcare professional, but also as a lifelong sufferer of severe allergies and mild asthma, and as a caregiver for her mother with COPD.