Factors That Guide End-Of-Life Planning

If the patient has, or can have, clear preferences about treatment, respect for the patient requires that care providers give effect to the patient’s views. Autonomy of the patient is the predominant ethical principle that drives end-of-life decision-making in many societies. Most patients with advanced COPD want to make their own decisions regarding life supportive care [1]. Many, but not all, patients wish to retain control of these decisions, if they lose decision-making capacity, through their surrogate decision-makers or through their written advance directives [6].

To make informed decisions, patients need knowledge of the nature of alternative therapeutic decisions and their probable outcomes. Patients with severe lung disease often alter their willingness to accept life supportive care when informed of a low likelihood of survival or the likelihood that recovery will entail an unacceptable functional status. Discussions with their physicians and other healthcare providers about possible future advanced life supportive care interventions are needed during stable periods of health, before these interventions have taken place. Decisions about life-supportive care are aided by explaining time-limited trials of treatment, which allow medical treatments for a predetermined time, after which they can be withdrawn if the potential benefits do not occur.

Patients with COPD should be asked what they understand about how the disease will affect them over time and whether they wish to discuss their advance care planning. Most patients with advanced lung disease desire advance care planning discussions with their physicians, while a small minority (<5%) do not [1]. Most patients with chronic health conditions believe these discussions will decrease their anxiety and depression [1, 6, 7]. Patients who initially refuse these discussions may become more receptive to talking about advance care planning after they receive general information regarding the nature of their disease [8].

All caregivers should assess patients’ needs for advance care planning. The caregiver most closely involved with the patient’s care should initiate advance care planning discussions, which has been termed "captaincy" [9]. Caregivers should become informed about end-of-life planning and palliative care. Patients accept nonphysician rehabilitation caregivers as acceptable sources of information on advance care planning [1].

Pulmonary rehabilitation provides an important opportunity to assist advance care planning for patients with moderate-to-severe COPD. Educational programmes on advance care planning within pulmonary rehabilitation increase the adoption rate for instruments of advance care planning and patient-physician discussion about end-of-life care [10]. Most pulmonary rehabilitation programme directors (70%) consider end-of-life education as an appropriate component of their curriculum [11].

To date, most interventions to encourage caregivers to initiate end-of-life planning discussions with their patients, such as hospital policies, case manager facilitators, computer prompts to electronic medical records or physician education, have had only marginal benefit [12-23]. Greater research is needed to understand the barriers that limit the occurrence of these discussions betweens patients and their physicians and other caregivers. Recent reports propose strategies for improving implementation of advance care planning in hospital settings [24]. These strategies include defining, as sentinel events and medical errors, the absence of advance care plans or the miscommunication of patients’ advance care decisions, structuring healthcare system reimbursement for hospitalisation to reward advance care planning and system-wide performance improvement efforts.