If you define palliative care as excellence in comprehensive care and patient education for complex chronic illness, then all treatment modalities for COPD are palliative. If on the other hand palliative care is defined as treatment modalities that do not aim to prolong life then chronic oxygen therapy and antibiotics for acute exacerbation would be excluded because of evidence that they prolong life, as well as possibly non-invasive and invasive mechanical ventilation.
Because education is an important part of palliative care, it also encompasses advance care planning. Unfortunately advance care planning and the education that it requires are not keeping up with the growing burden of COPD. This may be driven by low awareness and poor efforts at early diagnosis, as illustrated by a recent paper showing that hospitalization for exacerbation is often the first occasion for diagnosing the disease, which by then is often late stage. (You can't do advance care planning if you haven't even made the diagnosis!).
Another reason why patients with COPD receive less palliative care and advance care planning than comparable diagnoses such as lung cancer and heart failure may be an under appreciation of the prognostic implications and symptom burden of COPD. Here's a sad and frightening statistic cited in the review:
Only 63% of patients dying with COPD despite being housebound with extensive symptoms and recent admissions knew that they were going to die [19].
There are many barriers to advance care planning, both patient centered and physician centered. One of these is the lack of time, or perceived lack of time available in the ambulatory clinic, the setting where such discussions are most likely to be effective, as opposed to the hospital. Another barrier is the unique and often deceptive clinical trajectory of COPD. From the review:
The disease trajectory of COPD represents an additional barrier. Patients experience a gradual decline in physical capacities over many years punctuated by episodic acute exacerbations followed by functional improvements that usually do not reach previous baseline levels (Fig. 1) [10••,28]. This trajectory contrasts with advanced cancers, which usually provide more obvious transitions toward EOL and signals for ACP. The episodic deteriorations and partial recoveries with COPD lull physicians into thinking ACP can wait until a future date and clouds the definition of what constitutes ‘end of life’ because points of transition are so poorly recognizable [13••].
Because the clinical trajectory is so unpredictable, palliative care and advance care planning should start early in the disease process. A major barrier to doing that is the mistaken notion that palliative care equates to end of life care. Refinements in the definition of palliative care may help to remedy that problem.
The ambulatory clinic, during periods of disease stability, is the most effective setting for these conversations. Ironically it is the time when such discussions are least likely to occur. In the hospital during an acute exacerbation there may be too many distractions, twists and turns for the patient and the family members to think clearly.
1 comment:
Found your article while looking for some advice/guidance regarding my sister, 67, who is suffering with COPD. She signed a DNR today and there has been discussion about planning for hospice care.
Interesting article, awful disease...
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