Hospice of the Comforter

A recent study in the Journal of Hospice and Palliative Medicine¹ found that symptom burden and palliative care needs of breathless patients with severe COPD are as high as among patients with lung cancer although patients with COPD have a longer survival. What does this mean to patients suffering with this illness?

Even though people with COPD usually live longer than those with lung cancer, their symptoms are just as intense and longer-standing. The final years are usually characterized by increasing functional decline, debilitating breathlessness, and higher caregiving needs. Unfortunately, although chronic obstructive pulmonary disease (COPD) is the fourth leading cause of death in our country, many people with this condition never receive hospice services.  

The causes for this are usually related to the unpredictable disease trajectory and a limited awareness amongst pulmonologists and the general public about specific hospice eligibility criteria.

The hospice physician, nurse, social worker, chaplain, hospice aide and volunteer can all be useful partners in helping patients and their families cope with the many problems that arise over the course of progressive COPD.

Shortness of breath can be lessened by appropriate medications, oxygen and energy saving equipment which are usually covered hospice services.

The nurse and physician can assure that these interventions are all individualized based upon the patient’s needs. Breathlessness can lead to symptoms of anxiety and depression as patients become very scared and anxious when unable to breathe easily, and they can also become very discouraged and hopeless when they become too weak to engage in usual activities. Once again, the nurse and physician can work with the patient in individualizing the needed medications for these symptoms, and the social worker and counselor can provide counseling support. The family, too, is affected by the illness as they are required to do more and more in caring for their loved one. The hospice aide can assist by providing for the patient’s personal care needs, and the volunteer can assist with patient visitation so the caregiver can take a short break.

The following indicators may signal readiness for hospice for someone living with COPD. Please share this knowledge with those you may know who are affected by COPD so they may receive hospice assistance when needed.

• Diagnosis of severe lung disease
• Disabling shortness of breath at rest , poorly responsive to inhalers and other medications
• Progression of disease (hospitalizations or ER visits for infections or respiratory failure )
• Oxygen dependency
• Signs of decline: weight loss, poor food intake, increased sleeping, mostly spends time in bed or chair

¹_{Reference: Claudia Bausewein, Sara Booth, Marjolein Gysels, Robert Kühnbach, Birgit Haberland, Irene J. Higginson. Journal of Palliative Medicine. September 2010, 13(9): 1109-1118. doi:10.1089/jpm.2010.0068.}