Ethical and Palliative Care Issues

HomeCOPD GuidelinesFor Health ProfessionalsEthical and Palliative Care Issues ▶ Palliative Care at the End of Life

Palliative Care at the End of Life

Patients with chronically progressive COPD who reach the terminal stage of their disease frequently develop disabling symptoms of cough, dyspnoea, anxiety and depression [34]. Such patients require clinicians with expertise in palliative care [35] and interventions that relieve intractable symptoms at the end of life [36].

Effective palliative care focuses on the patient’s defined goals of care, amelioration of patient and family distress, and assistance with the family’s bereavement after the patient’s death.

Patient-centered palliative care requires a careful assessment of the individual patient’s unique needs as a "whole" person. Perceptions of suffering are highly individual and experienced in widely varied ways [37]. This comprehensive assessment evaluates the patient’s "whole pain," which spans the physical, emotional, independence and autonomy, communication, economic and spiritual domains [38, 39].

The physical domain represents a major source of suffering for patients with terminal lung disease. Common difficulties relate to dyspnoea, cough and retained airway secretions. Patients also need assessment for pain, loss of appetite, incontinence, risk for decubitus ulcers, and nausea or other gastrointestinal problems, such as constipation. Extreme fatigue and weakness accompany worsening dyspnoea.

The emotional domain of symptoms includes sadness and grief experienced by patients who progress with worsening dyspnoea and increasing dependency on family or other caregivers. Depression and delirium often combined with generalised anxiety commonly occur at the terminal stages of COPD.

The domains of independence and autonomy relate to the patient’s need, at the end of life, to retain a sense of control over one’s life and disease. Patients voice a desire to be heard as a person and to participate in decisions about medical care, activities of daily living and family events. Patients hope to retain their sense of dignity and personhood.

The domain of communication reflects patients’ needs to communicate with friends and family, to create a sense of closure to life affairs. Patients may wish to speak to someone who has been distant for years to resolve old conflicts or re-establish past friendships. Patients also reflect on how they would wish to be remembered. Having friends and family near to listen becomes important to patients who wish to have someone listen to their hopes, fears, plans and goodbyes.

The economic domain identifies lingering concerns patients retain about financial burdens that might be left to their family. Patients, as a part of life closure and the need to contribute to their love ones, wish to complete their financial affairs and care for those left behind.

The spiritual domain transcends a patient’s physical suffering and relates to fulfilment of spiritual needs and hopes for the future. Many patients wish to talk about the past burdens and blessings of their life and to tap the meaning they attach to their lives, accomplishments and suffering.

At the end of life, patients need reassurance that their caregivers will stay involved and will not abandon them [40]. Patients with COPD who die in the intensive care unit (ICU) during an acute hospitalisation have special needs [41]. Patient surrogates and family members of patients dying in the ICU rank pain control, availability of family at the bedside and efforts to address breathlessness as the most important factors that promote a peaceful and satisfying death experience [42].

Last Reviewed: February 2015