Living with heart failure or COPD: breathlessness, flare-ups and where palliative care fits

Heart failure and COPD are different illnesses with a lot in common. Both make it hard to breathe. Both have good stretches and flare-ups, and a flare-up can mean a trip to the hospital. Both are long illnesses, which is why palliative care belongs in them early, alongside treatment, long before the end. This note covers what helps with breathlessness, the daily checks and warning signs that catch a flare-up early, and where palliative care fits.

The short answer

• Palliative care can be given at any stage of a serious illness, along with treatment from the person’s cardiologist or lung doctor.¹
• Breathlessness can be eased, with breathing techniques, a fan, relaxation, oxygen when it’s needed and medicines such as morphine.^2,3
• With heart failure, weigh every morning and call the doctor about a fast gain.⁴
• With COPD, know the signs of a flare-up and what to do when one starts.⁵
• In California, Medi-Cal managed care plans must cover palliative care for members with advanced heart failure or COPD who meet the state’s criteria.⁶

Breathlessness: what helps

Feeling short of breath is frightening, and fear can make it worse. The National Cancer Institute lists ways to ease breathlessness without medicine:²

• Breathing methods, such as breathing out through pursed lips
• A fan blowing cool air across the cheek
• Meditation and relaxation training
• Talk therapy to ease anxiety

Pursed-lip breathing is worth practicing on good days, so it’s ready on bad ones. The American Lung Association teaches it this way:³

• Breathe in slowly through your nose.
• Pucker your lips as if you were going to whistle or gently blow out a candle.
• Breathe out slowly through your pursed lips, taking at least twice as long to breathe out as to breathe in.

It slows the breathing and keeps the airways open longer, which helps with shortness of breath.³

Medicines and oxygen help too. Oxygen is given when a person can’t take in enough on their own. Opioids, such as morphine, may help with the distress and the feeling of not getting enough air, and other medicines can help when breathlessness comes with panic or severe anxiety.² If the word morphine worries you, ask the palliative care team about it. Prescribed and watched by the team, it’s a treatment for a symptom.

Heart failure: the morning check

Weigh every morning when you get up, after using the bathroom and before eating, on the same scale. Write it down.⁴ Call the doctor if the weight goes up more than 2 to 3 pounds in a day or 5 pounds in a week.⁴

Call too for swelling in the feet, ankles or legs, shortness of breath that’s worse with activity or at rest, or shortness of breath when lying down.⁴ Fluid can build up before it shows, and the scale is how you catch it early. Our note on heart failure at home has the whole daily check. Keep the chart where the whole family can see it, and bring it to every appointment.

COPD: catching a flare-up

A COPD flare-up means the signs and symptoms are worse than usual and last 2 days or more.⁵ Early signs include:⁵

• Trouble catching your breath
• Noisy, wheezing breathing
• Coughing up more mucus, or mucus that changes color
• Morning headaches or anxiety
• Blood streaks in the mucus

When a flare-up starts, try not to panic. Take the medicines the provider prescribed for it, which may include quick-relief inhalers, steroids or antibiotics, and use pursed-lip breathing to slow your breathing and help you relax.⁵ If things don’t get better within 48 hours, or keep getting worse, contact the provider or go to the hospital.⁵

Call the provider right away if breathing keeps getting harder after following the plan, if the person can’t speak in full sentences, has chest pain or a fever, coughs up dark mucus, has lips or fingertips turning blue, or seems sleepy or confused.⁵

To prevent flare-ups, stay away from smoke, get the recommended vaccines, including flu, pneumococcal, RSV and COVID-19, and wash hands often.⁵ Ask the provider about pulmonary rehabilitation, which teaches exercise, breathing and nutrition.⁵ Medicare covers pulmonary rehabilitation for moderate to very severe COPD, with the Part B deductible and coinsurance.⁷

Where palliative care fits

Palliative care works together with the person’s other doctors.¹ For heart failure and COPD, a palliative care team can:

• Treat breathlessness, fatigue, anxiety and other symptoms
• Go through every medicine and inhaler, and how to use them
• Help the family write a plan for the next flare-up: what to do first, who to call and where the person wants to be treated
• Talk through what matters most, and put the person’s wishes in writing

In California, Medi-Cal managed care plans must cover palliative care for members who meet the state’s criteria.⁶ For heart failure, that includes a hospital stay for heart failure with no further invasive treatment planned, or Class III or higher symptoms on the New York Heart Association scale, along with a low ejection fraction or other serious conditions. For COPD, it includes low lung function with oxygen needed around the clock, or a need for 3 liters a minute of oxygen or more around the clock.⁶

When the illness advances

Later, when treatment no longer holds the illness back, hospice can care for the person at home. The guidelines doctors use in California look for heart disease at the most severe level despite the best treatment, or lung disease with disabling breathlessness at rest and low oxygen.⁸ When one organization provides both palliative care and hospice, the move can happen without starting over somewhere new.