Respiratory Disease / Lung Disease

There’s often a difficult shift in perspective required at some point in a progressive disease. When someone has COPD, then throughout the illness there’s usually a focus on pulmonary function tests, treatments for infection, and efforts to slow the progression of the disease. As COPD reaches advanced stages, these efforts have less effect on someone’s condition, and focus shifts to patient comfort. There’s less attention to tests, details and numbers, and more attention to how someone looks and feels.

With advanced COPD, oxygen is used mainly to relieve shortness of breath and the level is adjusted gradually. It’s done gradually because some people with COPD only get the signal to breathe if oxygen levels are low. If this person gets too much oxygen, the breathing signal can be dangerously depressed, and breathing stops. Most people don’t have the specialized knowledge to assess how much oxygen someone needs. Trained specialists who know the patient’s history and current condition have the knowledge to determine the correct level. It’s important to talk regularly with the health care team about how to care for someone at home.

Oxygen is just one of the medications used to treat symptoms of advanced COPD. There may be other medications, such as opioids for shortness of breath and medications for anxiety that can ease breathing and provide comfort. It may be helpful to request palliative care resources. In most areas the palliative care team works with the health care providers to ensure the best care for someone at home.

The Canadian Thoracic Society defines COPD as "a respiratory disorder largely caused by smoking, which is characterized by progressive, partially reversible airway obstruction and lung hyperinflation, systemic manifestations, and increasing frequency and severity of exacerbations".¹

Each person’s situation is very different, which makes it difficult to predict the progression of a chronic disease, such as COPD. While it’s impossible to predict accurately the course of the disease, it’s not helpful to be told that “only time will tell.” Some things can be anticipated, and it helps to prepare for them, as well as for the possibility that circumstances may change unexpectedly. A person’s health care team understands the underlying factors in that person’s disease, and can offer useful information about what to expect, and how to prepare for it.

In general, people living with COPD deteriorate physically over time. A decrease in energy and strength is common with progressive diseases. Typically people also experience decreasing capacity for activity, increasing shortness of breath, weight loss, and decreasing blood oxygen levels. It’s important to connect with health care providers to address these symptoms before they become a serious problem, and to ensure that the person remains comfortable throughout the course of the disease. The health care team can help in deciding whether home oxygen is helpful, or if home care assistance is needed. The team can also recommend any medications that may help, such as medications to relieve shortness of breath and to increase comfort.

It’s very difficult to estimate how long someone can live with COPD. Tests such as x-rays, blood gases, or pulmonary function tests can’t predict survival reliably unless the results are very abnormal. If that’s the case then the person’s overall energy and functioning also indicate that death may be near. It’s most informative to consider a guideline called the momentum of change. According to this guideline, if someone’s condition changes significantly from month to month, it’s a strong indication that the person has months left to live. If such changes happen from one week to another, it often means there are only weeks of life left. If there are changes from one day to another or from hour to hour, then there are usually days or hours left. The momentum of change also may take into account the number of hospitalizations in the past months, as well as changes in medications or increase in oxygen requirements. The momentum of change is a general guideline only. Sometimes something happens that causes a person’s condition to change unexpectedly. It’s important to recognize this and prepare for the unexpected.

These steps offer one approach to dealing with the uncertainty in the progression of COPD:

• Talk with the health care team to get an informed assessment of the patient’s condition.
• If it’s reasonable to assume that someone has months rather than years of life left, consider planning as if this is the case, even while hoping that there may be more time. Planning in this way allows families and patients to say what they want to say, and do all the things they want to do, whether it’s writing a will, planning a funeral, preparing a journal or writing to family members.
• Consider preparing a formal health care directive. This document conveys a patient’s wishes for care in the future. The health care team has information that can help in preparing a directive.
  

Reference:

1. O'Donnell DE, Aaron S, Bourbeau J, et al. Canadian Thoracic Society recommendations for management of chronic obstructive pulmonary disease - 2007 undate. Can Respir J. 2007;14 (Suppl B):5B-32B.