COPD as a Life-Limiting Illness: Implications for Advanced Practice Nurses

Donna M. Goodridge, RN, PhD

Disclosures

Topics in Advanced Practice Nursing eJournal. 2006;6(4) 

In This Article

Advance Care Planning

Patients with severe COPD and their families often must decide whether they want to undergo life-supportive care, such as admission to the intensive care unit or mechanical ventilation, during acute medical crises such as sudden, life-threatening exacerbations of COPD or episodes of acute respiratory failure.[48] COPD patients are more likely than lung cancer patients to die receiving aggressive, technological care directed at preservation of life, despite having expressed a preference for comfort care alone.[49]

Understanding the nature and implications of treatment options is a critical component of advance care planning for persons with advanced COPD. A study in Oregon found that patients did not understand their treatment options at the end of life, such as refusal or withdrawal of life support, physician-assisted suicide, active euthanasia, and the principle of double effect.[50] The principle of double effect governs interventions that seek a good effect (such as relief of pain), but which may have a bad result (such as death from respiratory depression).

Unfortunately, there is substantial evidence that only a small portion of people with COPD have the opportunity to discuss their wishes for care before the onset of a medical emergency.[38,51,52,53,54] In 1 study, few patients with moderate to severe COPD had discussed end-of-life care issues with their physicians, and less than 15% of them believed that their physicians understood their preferences for treatment at the end of life.[52] Another study noted that patient-physician communication about end-of-life care occurred very late in the COPD trajectory and usually took place in the intensive care unit, with most physicians waiting to initiate the discussion until dyspnea was severe.[55]

Many people with COPD want to have such discussions,[44,56,57] yet the majority of participants in 1 study reported that their physicians never discussed prognosis, the experience of dying, or patients' spirituality.[53] Of interest, most general practitioners believe that discussions of prognosis are necessary or even essential in severe COPD, yet less than half "often or always" engage in such discussions themselves.[38] Those who "never or rarely" discussed prognosis with severe COPD patients said they felt ill-prepared to talk about it. Knowing the patient as an individual was considered a necessary prequel to initiating end-of-life care discussions, and physicians also recognized the importance of their framing of the issues on patients' treatment choices.[58]

This "deadlock" in end-of-life communication was described by Heffner and colleagues.[52] While most physicians wait for their patients to ask for information, most COPD patients wait for their physicians to bring up the topic.

Thus, APNs can play a significant role in initiating and continuing discussions about outcomes values and treatment preferences. The APN should recognize that some patients may, however, prefer not to talk about dying and end-of-life care,[54,59,60] thus creating an additional barrier to advance care planning. For example, Willems and colleagues[61] noted in a study of advanced heart failure patients that none were very concerned about the end-of-life decision-making process, and most said they did not think about death at all, or only during exacerbations. Because these individuals had experienced long periods of health stability, which is a characteristic of many chronic illness trajectories, and also had successfully recovered from previous acute exacerbations, the authors speculated that the patients may not have fully understood the advanced and life-threatening nature of their disease. APNs need to be sensitive to the choices patients make about participating in end-of-life discussions.

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