Chronic obstructive pulmonary disease (COPD) refers to a number of lung conditions that are ongoing and progressive. This means that the condition cannot be cured and will become worse over time. By reading this guide, you will learn more about COPD and bronchiectasis and how to help a family member or other individual when they are discharged from the hospital and have to live with a chronic lung condition.
A person with COPD may have shortness of breath and a persistent cough that produces sputum. Their lung function becomes damaged, the bronchial walls become inflamed, and the bronchial tubes may become blocked with mucus.
A person may also feel as if they cannot take a deep breath and have excess sputum production. Individuals with COPD are more prone to upper respiratory infections like colds and flus. They are also more likely to develop infections like community-acquired pneumonia and such infections may be deadly. COPD is the third leading cause of death in the U.S.
While COPD cannot be cured, it is treatable. Medical treatments and lifestyle changes may provide COPD individuals with some relief from their symptoms.
What Is Bronchiectasis?
Bronchiectasis is a related condition in which an individual’s bronchial tubes (airways) become widened and damaged over time. As a result, mucus may collect in the airways causing breathing difficulties and lead to increased sputum production.
Bronchiectasis may be caused by a serious infection like pneumonia or it may be congenital, meaning the condition was present since birth. Some individuals with certain genetic disorders or immune disorders may be more likely to develop bronchiectasis during their lifetime.
Like COPD, bronchiectasis is a chronic illness. There is no cure and the condition becomes more severe over time. Individuals with bronchiectasis are more likely to develop infections of the lungs and airways and each infection causes further damage. Prompt medical care is necessary in order to minimize the damage caused by the infection.
Medical Complications With COPD Or Bronchiectasis
A variety of medical complications may arise after an individual with lung disease has surgery or is discharged from the hospital. Individuals and their caregivers should carefully review hospital discharge instructions for information on how to avoid complications.
It is important that an individual with a diagnosis of bronchiectasis, COPD, cystic fibrosis, or chronic bronchitis receive prompt treatment if they develop an infection or experience respiratory distress after discharge from the hospital.
Individuals with lung disorders are at particular risk of developing lung infections such as community-acquired pneumonia. If the individual experiences any of the following symptoms after being discharged from the hospital, they should seek immediate medical attention:
- Heartbeat faster than usual or irregular heartbeat
- Wheezy, rattling, or otherwise abnormal breathing
- New symptoms appear such as swollen legs or abdominal pain
If the individual experiences any of the following symptoms of respiratory distress, contact 911 immediately for medical help:
- Lips, fingers, or other extremities turn blue/gray
- Disorientation or confusion
- Severe chest pain
- Struggling to breathe or speak
Selecting Health Care Providers
Finding the appropriate care providers is crucial for improving the individual’s prognosis. Individuals with lung disorders will interact with a number of different medical professionals as they seek treatment for their condition. These doctors may include a primary care doctor, a pulmonologist, and a pulmonary rehabilitation specialist.
Individuals often receive a diagnosis of bronchiectasis or COPD from their primary care doctor. Their primary care doctor may provide the initial treatment. As the symptoms of bronchiectasis or COPD progress, their primary care doctor will usually refer the individual to a pulmonologist for specialized care.
A pulmonologist is a doctor who specializes in diseases affecting the lungs. A pulmonologist will provide the person with additional treatment which may include anti-inflammatory therapy if they are not responding to the treatments administered by their primary care doctor or if their disease is becoming more advanced.
A pulmonologist will examine the bronchial tubes, bronchial walls, and overall lung function by ordering a number of tests which may include:
Pulmonary rehabilitation specialists may help the individual learn to manage their symptoms and develop strategies for living with their disease. These specialists are able to provide a wide range of services, including physical therapy, dietary recommendations, and other information on lifestyle changes.
Chronic bronchitis, cystic fibrosis, and other forms of COPD are medical conditions that require complex and ongoing treatment from a variety of specialists and care providers. In most cases, the individual’s primary care doctor will provide referrals and recommendations for how to access additional care.
As an individual and their family make decisions about the type of care the individual requires, their primary care doctor and pulmonologist will be able to provide recommendations and referrals.
An individual’s health insurance provider will also be able to offer a list of local providers who are covered under their insurance plan. These resources are an excellent starting point for individuals and families making plans for future care needs.
Care Needs Related To COPD And Bronchiectasis
COPD and bronchiectasis are long-term, progressive conditions. While care needs may be most acute following hospitalization or surgery, long-term care is often needed at some point during the progression of the disease.
After discharge from the hospital, an individual may need assistance with the following tasks:
Individuals with chronic obstructive pulmonary disease or bronchiectasis may find it difficult to stand for long periods of time. They may find it easier to take baths rather than showers or they may prefer to use a bath stool so they may sit while showering.
If the individual feels ill or faint, they should not bathe or shower without supervision. Falls may be extremely dangerous so every precaution should be taken to ensure that individuals with breathing difficulties do not become dizzy when bathing alone.
Tight-fitting clothes which may restrict breathing should be avoided. Tight bras, belts, or support wear are often uncomfortable for those with breathing difficulties. They may also be difficult for the individual or caregiver to remove.
Clothes that can easily be slipped or buttoned on will be most comfortable. These items are also easier to put on and remove. An individual may also want to start wearing shoes that can slip on rather than shoes with laces, zippers, or other fasteners.
It is important to stay well-hydrated following discharge from the hospital. Encourage the individual to drink plenty of water which will help liquify sputum secretions and make them easier to cough up. Dairy products like milk should be avoided as they may increase sputum production and make it more difficult to breathe.
Consult the hospital discharge instructions to learn about any other foods the doctor has advised the person to avoid. In some cases, it may not be safe to drink alcohol. Ask the doctor for more information about specific nutritional requirements and restrictions.
Many individuals with lung disorders find it difficult to move around comfortably as they may suffer from shortness of breath. Caregivers and family members can help by ensuring that all personal hygiene and grooming items are kept in one central area such as a bathroom shelf. This prevents the individual from having to move around more than necessary.
When the person is discharged from the hospital, medical staff will explain if they should delay bathing for any reason. If the individual recently had surgery, they may need to keep the incision or affected area dry while it heals.
Patients with COPD or bronchiectasis may feel more comfortable if they are able to sit down while taking care of their grooming needs rather than standing in front of a bathroom mirror. They may wish to keep a chair or stool in the bathroom for this purpose.
Caregivers and people with these disease processes should avoid perfumes, colognes, body washes, and other personal care items that have strong scents since these may worsen their symptoms. Aerosol sprays should also be avoided because they may cause lung irritation.
In some cases, individuals may find it difficult to rise from the toilet. Installing handles, rails, or grab bars on the wall near the toilet may help the person safely sit down on and get up from the toilet.
If the individual has difficulty using the toilet on their own, they may need assistance from a family or caregiver. It is extremely important that they do not attempt to use the toilet on their own if they are unable to do so safely.
Individuals who are taking opioid pain medications such as codeine, morphine, or hydrocodone may suffer from constipation and have difficulty passing a bowel movement. If this occurs, consult a doctor for advice.
Transfer From Bed To Chair
Individuals may need help moving from their bed to another location. If a person regularly experiences difficulty mobilizing, their doctor may be able to offer suggestions for a walker, wheelchair, scooter, or other mobility aid.
If an person struggles with mobility, they should be supervised carefully to ensure that they do not fall. Any falls or other injuries should be reported to a medical professional right away. It is particularly important that a person taking blood thinners receive emergency medical attention in the event that they fall. Even if they do not seem to be injured, they should seek medical advice immediately.
An individual’s mobility will depend upon their health conditions and prognosis as well as any recent medical treatments they might have received. Those who have recently undergone surgery may have particular difficulty mobilizing. These individuals may need 24/7 care from family members or home health aides.
Others may be able to move around on their own with or without help from mobility aids. If an individual requires a mobility aid, it is best to consult their doctor to determine which type of device is needed and where such devices may be rented or purchased in the local area.
It is very important that an individual take all medications as prescribed. Many medications prescribed will be for anti-inflammatory therapy of the lungs which will help keep the condition under better control.
If a person has difficulty tolerating certain medications, they should contact their doctor immediately. Do not discontinue medications or reduce their dosage without consulting a medical professional.
Certain prescription drugs may interfere with other medications they may be taking. Make sure that the doctor and pharmacist know about all medications the individual is currently taking including over-the-counter medications.
Individuals experiencing new or worsening symptoms such as pain, nausea, or dizziness should contact their doctor. The doctor may recommend over-the-counter medications or other at-home treatments which may make them more comfortable.
Many people with chronic obstructive pulmonary disease or bronchiectasis have difficulty breathing when they lie down. They may be more comfortable sitting upright as much as possible. Specialized breathing techniques may also provide the individual with some relief.
There are a variety of medical devices such as portable oxygen delivery devices designed to help individuals with breathing difficulties. If a doctor recommends the use of one or more of these devices, the doctor and/or their staff may be able to provide individuals and caregivers with advice on how to use the device properly.
Most medical devices come with instruction sheets or manuals. Individuals and caregivers should read these instructions closely in order to ensure that they are operating the device safely and that they are cleaning the equipment as required.
If an individual is not able to read or understand the instructions on their own, a caregiver or medical professional should carefully explain to the person how to operate the device.
Coordinating Medical Care
Managing medical care may be an overwhelming task, particularly if an individual is under the care of multiple doctors and has many appointments to keep track of. It is common for people with chronic lung diseases to need a repeat chest x-ray or more pulmonary function tests if their symptoms worsen.
Family members and caregivers can help the person stay organized by developing a system for keeping track of medical information. They may find it useful to keep different papers such as lab orders, test results, and prescription information sheets in a binder which may be brought along to doctor’s appointments.
It is also advisable to maintain a personal medical record which includes an up-to-date list of all medications being taken. This list should include the dosages of all medications including over-the-counter medications that are taken on a regular basis and information about any medical devices the individual requires.
Transportation may be a particular challenge for individuals with lung disorders. Following discharge from the hospital, the person will need a family member or caregiver to drive them home. Individuals taking certain medications or recovering from certain surgeries may not be able to drive safely for some time. The doctor will provide further guidance on when the person may resume driving.
Many people with lung disorders benefit from having a handicapped permit. This permit allows individuals and their drivers to park in special areas closer to their destination. The permit also allows the car to stop alongside certain curbs to exit the vehicle. These permits may be obtained by contacting your state’s Department of Motor Vehicles.
Depending on an individual’s condition, they may be able to perform some household chores independently. Others may need help with household tasks as they recover.
Family members and caretakers can create a household care plan by making a list of household tasks that must be attended to and then determining which (if any) the individual is able to perform on their own.
If a person requires extensive help with household tasks, family members may be able to provide regular assistance. Alternatively, it may be preferable to arrange for a regular house cleaning service.
If an individual is no longer capable of managing their own finances, it may be time for a family member to assist with this task. Keep in mind that this may be a sensitive topic and the person may be reluctant to turn over these tasks to others.
If an individual is still able to make appropriate financial decisions yet needs assistance with accompanying tasks such as visiting the bank to make a deposit or filling out forms, family members and caregivers may be able to help with these duties.
In the event that an individual cannot manage their finances in any capacity, family members may need to consult the individual’s financial institutions along with a lawyer to determine what steps should be taken to help their family member. If a family member does not already have a power of attorney which allows them to act on the individual’s behalf, the individual’s next of kin may need to seek legal advice on how to obtain this.
Returning Home After Hospitalization
Patients with COPD or bronchiectasis may require various types of care at different times in their life. An individual who is usually independent may occasionally experience short-term care needs after hospitalization or surgery.
Alternatively, long-term care may be required. Some individuals may be able to return home and receive care in that setting while others may need to move to a special care facility.
Individuals and their families should consider all the different care options available to them and determine which type of care best meets the individual’s needs.
Determining At-Home Care Needs
Individuals and family members who are unsure what level of care is needed should consult a doctor for further guidance.
The decision to hire a professional caregiver is a complex one. When making this decision, family members should carefully consider their own level of availability and medical expertise. They should also consider whether a person needs short-term or long-term care.
Individuals with lung disorders may need help using complex medical equipment or maintaining a complicated regimen of medications. In these situations, hiring a home health aide may be the safest course of action.
In some cases, individuals who need additional support may safely receive care at home. In order to determine if home care is an option, the first question the individual and their family will need to consider is whether professional at-home care is necessary (as opposed to at-home care provided by a family member).
If an individual is able to perform most or all of the activities of daily living (ADLs), professional care may not be required. Family members, friends, and neighbors may be able to assist with any household tasks or errands as needed.
If a person struggles to perform ADLs and/or their family cannot provide regular caregiving support, it may be necessary to hire a professional to provide home health care.
Choosing A Home Health Aide
The type of home health care needed will vary depending upon the level of care an individual requires. Some people may require primarily non-medical services such as:
- Assistance with dressing/grooming
- Assistance with meal preparation
- Assistance caring for pets
- Assistance with light housekeeping and laundry
If an individual does not require medical care, it may be appropriate to choose a home health aide without medical credentials. This type of care is often referred to as custodial care. These care providers may offer assistance with simple household tasks and/or provide companionship.
Some individuals may require skilled medical care. An individual who needs professional medical care may require help with:
- Dispensing and administering medication
- Monitoring vital signs including blood oxygen levels or blood pressure
- Wound care including changing sterile dressings
- Cleaning and maintaining medical equipment
- Monitoring health conditions and summoning emergency help as needed
Depending on the level of care a person requires, qualified home health care staff may have the following credentials:
- Registered nurse (RN)
- Licensed practical nurse (LPN)
- Certified nursing assistant (CNA)
- Home health aide (HHA)
Paying For At-Home Care
Affording an at-home caregiver may be a financial challenge for many families. In some cases, the costs for at-home care are covered by an individual’s insurance provider, particularly if they have a long-term care insurance policy.
Medicare may cover at-home care if the following qualifications are met:
- Skilled nursing care is required.
- The individual is under a doctor’s care.
- The individual is homebound.
- The individual does not require 24/7 care.
Medicare does not pay for custodial care alone; however, Medicaid may provide custodial care coverage for some low-income individuals. Medicaid benefits vary by state. The Medicaid website offers more information on each state’s eligibility requirements and how to apply for coverage.
Making The Home Safe
If an individual will be receiving care at home, certain modifications may be necessary in order to maintain a safe environment at home.
COPD patients may have difficulty climbing and descending stairs. If the home is large, the individual may become tired or out of breath from moving between rooms. In a multi-story home, it may be more comfortable for the person to move their bedroom, office, or other regularly-used rooms and equipment downstairs.
Handrails and grab bars may need to be installed in bathrooms and showers, besides toilets and in other locations where the individual may have difficulty maintaining their balance. Rugs may need to be secured to the floor or removed to reduce the risk of tripping. Electrical cords and small pieces of furniture such as footstools should also be removed or secured.
In some cases, it may be helpful to move a large piece of furniture out of the way so the individual has more room to maneuver. This is especially important if the person will be using an oxygen tank or another bulky piece of equipment that they must take with them.
Medical Devices And Equipment
A variety of medical devices and equipment may be necessary in order to keep an individual safe and comfortable at home.
Special medical devices such as oxygen delivery devices or nebulizers/inhalers may be recommended by the individual’s doctor. The doctor will provide guidance on where to obtain these items. Medicare Part B provides coverage for oxygen equipment and other durable medical equipment.
Other items like handrails, shower stools, or exercise equipment may be useful. These items may be available for purchase in medical supply stores or from reliable online retailers.
Planning Ahead For Long-Term Care Needs
Because COPD and bronchiectasis are chronic progressive diseases, they will gradually worsen over time. Each individual will experience the progression of the disease in a unique way. Some individuals deteriorate rapidly while others remain in the same condition for long periods of time. It can be difficult to know how the illness will progress or when additional care will be needed.
It is a good idea to begin to make plans and do preliminary research on hiring a caregiver or selecting a care facility even if such care is not yet needed. This will allow plenty of time to choose a care provider that will be covered by an individual’s insurance or make plans for how to cover any out-of-pocket costs.
Individuals should also make sure to clearly explain to their family members what kind of medical care they wish to receive in the future. Whenever possible, individuals should document their wishes in the form of an advance directive. It is also advisable to prepare a will.
Finally, individuals may wish also wish to arrange for a trusted family member to have power of attorney. This would allow the family member to make legal and financial decisions on the person’s behalf in the event that the individual is no longer able to make decisions on their own.
It may be difficult to have these conversations, particularly if the person is planning on having surgery soon or recovering from a recent hospitalization. Individuals may feel uncomfortable discussing these matters and family members may be afraid of alarming them by bringing up such topics. Planning ahead will help ensure that the individual’s wishes are respected and honored in the event of a medical emergency.
Residential Long-Term Care Options
In some cases, an individual may be unwilling or unable to remain in their home. They may need a greater level of care than their at-home caregivers are capable of providing. They may also wish to move to a setting where they will receive more companionship and supervision. Care facilities can sometimes offer a greater level of professional support than at-home caregivers.
Care facilities may be grouped into the following categories:
- Independent living
- Assisted living
- Nursing homes
Independent living facilities are appropriate for individuals who are able to perform all ADLs and manage most of their own medical needs. Independent living facilities do not provide medical care, but they may be able to provide assistance with housekeeping or other non-medical tasks. These facilities may also offer special options for socialization and companionship.
Assisted living facilities (ALFs) provide an option for individuals who need help performing some ADLs, such as personal grooming, taking medication, or meal preparation. These facilities typically provide meals, laundry service, housekeeping services, and transportation. The staff at these facilities have some medical training and are able to provide general medical supervision.
Nursing homes are the most appropriate setting for individuals who need continuous medical care. Staff members will assist with taking medications and will monitor an individual’s physical and mental condition on an ongoing basis. Nursing home staff will also help with bathing, dressing, and toileting. Meals and other necessary services are provided. Individuals who are no longer able to care for themselves or perform any ADLs independently usually require nursing home care.
Selecting A Long-Term Care Facility
Choosing a long-term care option may be overwhelming. Family members are often anxious to ensure that an individual will receive the best possible care and feel comfortable in their new setting. A checklist may be useful for evaluating which care facilities are trustworthy and well-organized.
In addition to weighing practical considerations such as cost or proximity to family, family members should also evaluate care facilities based on the following:
- Ensure that the facility is licensed – Family members can help determine whether the facility meets licensing requirements by contacting their state’s department of social services.
- Visit the facility – Individuals and their families should visit prospective care providers and take a tour. They should ask to view all accommodations including rooms and cafeterias. Individuals and their family members may wish to meet staff members who will provide daily care as well.
- Find out what services are provided – Each facility may offer slightly different services including housekeeping services or options for socialization. Some facilities may also offer more extensive medical care than others.
- Ask about policies for medical emergencies – Individuals and their families should inquire as to how the facility handles medical emergencies, who will provide medical care, and what will happen if an ambulance must be called.
The Caregiver’s Role
The prognosis for a person with COPD or bronchiectasis may vary. Some individuals with these conditions are able to live independently and manage their conditions with few difficulties while others need extensive support and care.
As noted earlier, these conditions are chronic and progressive and gradually worsen over time. Family members and caregivers will need to continually re-evaluate how much care a person needs. Some individuals may be able to live alone for a while. It’s important to note that care needs will change as the disease progresses.
Depending on the severity of their health condition(s), individuals may require support with the following tasks:
- Running errands
- Grocery shopping
- Make phone calls
- Preparing meals
- Doing laundry
- Caring for pets
- Minor household repairs
- Caring for lawn or garden
Individuals who need more extensive support may require help performing ADLs such as:
To determine what level of care is needed, it may be helpful for individuals and their family members to fill out a checklist of the areas where the person needs help.
Individuals who need help performing ADLs will likely need a full-time live-in caregiver. Other individuals may be able to manage safely on their own as long as they have regular help.
This help may involve family members who assist with errands, a cleaning or gardening service that cares for the house, a dog walker, or other helpers who may provide support on a regular or as-needed basis.
The Caregiver’s Needs
COPD and bronchiectasis cause breathing problems which may be frightening or alarming for caregivers who are not familiar with these conditions. At times, family caregivers may be uncertain whether these breathing difficulties are normal and expected for a person with this condition or if the individual needs to seek emergency medical care.
Caregivers may find it helpful to discuss their concerns with the individual’s doctor and ask for clarification about when to call for medical help. Many insurance providers also offer a 24/7 nurse hotline which caregivers may find useful if they become concerned during evenings or weekends and they are not able to reach the individual’s regular doctor.
Some caregivers may find it helpful to see a counselor or join a caregiver’s support group.
FAQs About COPD And Bronchiectasis
1. I have recently been diagnosed with COPD/bronchiectasis. When should I start planning for future care needs?
Individuals and family members should begin planning for future care needs as soon as possible. Even if a person is currently able to care for themselves or expects to regain the ability to care for themselves very soon, sudden health emergencies may arise.
Planning ahead by choosing a home health agency or care facility will make the transition much smoother if and when the need for this care arises. In addition, planning ahead allows individuals and their family members to make financial arrangements and decide how they will pay for care when it becomes necessary.
2. I believe that my family member needs more care than they are currently receiving. What should my next step be?
It may be difficult to discuss the situation when an individual’s care needs suddenly increase. If the person is reluctant to accept that they need to make adjustments to their caregiving plan, consider sharing your concerns with their doctor. The doctor can evaluate your family member’s health and discuss any additional concerns or recommendations with them.
It is also strongly recommended that family members ask the person about their preferences regarding options for long-term care. Some individuals may be reluctant to move to a care facility, yet willing to hire a home health aide to come to their home on a daily basis. Other individuals may be willing to move in with a family member or consider moving to an independent living facility.
3. How will I determine whether my family member requires live-in/full-time care?
It is not always clear when an individual requires more extensive care. A person may conceal their difficulties because they are reluctant to give up their independence or worried about medical expenses; however, it may be unsafe for an individual who needs full-time care to continue living independently.
Family members and caregivers should consult with the individual’s doctor to determine the level of care needed. If the person is no longer able to perform basic ADLs including bathing, dressing, eating, and mobilizing on their own, then it is time to discuss options for full-time care.
4. What mental health conditions may affect people with lung disorders?
People with breathing difficulties or lung disease often suffer from anxiety and depression. It is important that individuals and caregivers seek help for mental health conditions.
An individual’s doctor may be able to provide referrals for counselors, therapists, and support groups. Health insurance providers may also be a good resource for mental health care resources.
Finally, local nonprofit organizations and senior centers often provide resources for individuals and families including options for socialization or enjoyable activities which may help improve an individual’s mood.
5. Should COPD patients get the flu shot?
The Centers for Disease Control and Prevention (CDC) strongly recommends that all adults receive yearly flu shots.
Because people with COPD may experience serious complications from upper respiratory infections, it is important that to take every possible precaution to keep an individual with these diseases healthy during cold and flu season. Caregivers and family members, as well as the individual themself, should receive the flu vaccination as recommended by their doctor. In addition, the person should not be exposed to any friends or family members who may have a contagious illness.