Palliative care for lung diseases

In advanced stages, many lung diseases cause symptoms such as shortness of breath. Even though the prognosis varies widely from patient to patient, it’s important to ensure that those with lung diseases receive palliative care.

Chronic obstructive pulmonary disease (COPD) affects about 3 to 4 percent of the population in Finland. The illness is often found at a mild or moderate stage. The most important treatment is quitting smoking. However, in some cases, the illness progresses and becomes severe.

Some diseases affecting the lung tissue may become severe as they advance and the lung tissue is replaced by fibrotic tissue. The most common illness of this type is idiopathic pulmonary fibrosis (IPF). If lung transplant is not an option and the progression of the illness can’t be slowed with medication, the illness is usually terminal.

Symptoms of severe lung disease include shortness of breath on minimal exertion, such as walking less than 100 metres on flat ground, recurrent exacerbations (episodes of sudden worsening of symptoms) and hospitalisations, having many other illnesses, significantly reduced pulmonary function as shown by breathing tests, and the need for oxygen therapy.

Even if the illness is severe, some patients live with it for several years. However, they still need a great deal of symptom management and support. In addition, the illness may rapidly progress to a point where the patient needs hospice care; this may come somewhat unexpectedly following a serious exacerbation. This is why it’s worth ensuring good palliative care alongside other treatments and making an advance care plan with the attending physician. This does not mean that the patient can no longer receive rehabilitation or treatment that aims to slow down the illness – on the contrary.

Important

You don’t have to cope with your symptoms alone

Be sure to tell your attending physician and members of the nursing staff about your symptoms. Good symptom management is a part of all stages of illness. Its purpose is to support you in making your life with a serious illness as good as possible.

Most common symptoms

Shortness of breath and coughing

The most common, and most troubling, symptom of lung diseases is shortness of breath. Inhaled bronchodilator medications that widen the airways relieve shortness of breath. Some people with severe lung disease find it hard to inhale the medication properly. In such cases, it’s a good idea to ask the doctor about alternative forms of medication. If the patient is low on oxygen and oxygen therapy has been deemed helpful, it should be applied as instructed. If the patient doesn’t have low oxygen levels, oxygen therapy is not helpful.

Physical exercise at an appropriate intensity level is beneficial. Other potentially helpful things include correct breathing technique and position, physical therapy exercises, and producing a stream of air (for example, by using a fan).

In severe cases, small doses of morphine or similar medicines can be used to relieve shortness of breath if other treatment methods have been insufficient. These medicines are sometimes helpful in relieving coughing as well.

Pain

People with severe lung disease may experience pain, especially around the chest. The treatment is the same as for other patients.

Psychological strain

Anxiety and depression are common in those with severe lung disease. In addition, these feelings make shortness of breath worse, which is why it’s good to talk about them. Both the care staff and the patient’s loved ones can offer their time, provide talk support, and be present for the patient. This can support the patient, even during a bad day. Calming the patient and managing panic play an important role in treating shortness of breath. Psychological symptoms can also be managed with medication.

Fatigue and loss of appetite

Advanced lung disease causes fatigue and leads to a gradual loss of appetite as well as malnutrition. If the patient experiences loss of appetite, it’s important to have small, frequent portions of energy-dense foods according to the patient’s preferences. Ways to try and reduce fatigue include getting fresh air and appropriate physical activity. It’s also important to adhere to a regular sleep-wake cycle. Additionally, corticosteroid medicines can be used to ease fatigue and improve appetite temporarily.

At the end of life

At the end of life, the patient’s strength decreases, fatigue intensifies, and the need for sleep and rest increases. At this stage, some patients with lung disease have a fear of suffocation. Even if shortness of breath is severe, it can be relieved up until the very end of life, with medicines such as morphine, or if necessary, with sedation (inducing a state of sleep). In most cases, the death of a person with lung disease is by respiratory failure and unconsciousness. Acute suffocation is extremely rare.

Palliative care: When and where?

It’s advisable to contact the unit responsible for your care if your general condition worsens, you develop symptoms that interfere with your life, or your symptoms get worse. All university hospitals, and many central hospitals, have palliative care units or persons in charge of palliative care, as well as pain clinics that can help with symptom management. Psychosocial support and talk support is also available. No one should be left to cope with their illness alone.

At the end of life, the care provider in charge of the patient’s care preferably attends to the patient as close to the patient’s home as possible. This can be a palliative outpatient clinic, regional hospital (formerly health centre hospital), home hospital, or a palliative ward. For assistance with essential care needs, home care services are employed. The important thing is to have a plan ready for where to get help at any time of the day or week.

At the end of life, going to the emergency department is a taxing experience and is often not required. Unnecessary visits to the emergency department are preferably avoided by cooperating with the care team ahead of time to prepare a plan for what to do if the patient’s condition gets worse or if their symptoms change. Unless it’s an acute medical emergency, it’s advisable to contact the unit responsible for the patient’s care before visiting the emergency department. If the patient has pre-existing access to home hospital services, a nurse or doctor can visit the patient at home and assess the situation, if necessary, or make arrangements for transfer to inpatient care (support ward) without the need to visit the emergency department