COPD and Lung Disease, Palliative Care
August 15, 2018

Important Palliative Care Discussions with COPD Patients Too Little Too Late

Patient in bed with oxygen mask

Patient-physician discussions of palliative care issues are crucial to ensuring that patients with chronic obstructive pulmonary disease (COPD) understand the nature of their illness and have their care preferences honored as their condition worsens.

Yet these conversations occur infrequently, are held late in the disease course and seldom cover topics patients need and want to discuss, according to a report published in ERJ Open Research, a journal of the European Respiratory Society.

“The findings indicated that the frequency and quality of palliative care conversations is generally poor,” write the authors. “The occurrence of discussions was associated with higher health status and of a higher quality of dying and death.

“Patients were also more likely to report having received the best possible care, to acknowledge that their provider knew the treatments they wanted and to state that their doctor provided a very good explanation of their breathing problems if they engaged in conversations,” they add.

Investigators analyzed English-language studies and articles identified through a systematic review of the literature from 1996 to 2015 on palliative and end-of-life care discussions between healthcare professionals and adult patients with COPD. Papers were quality assessed, analyzed and synthesized, with only those scoring medium to high quality included, resulting in a total of 37 papers, 20 of which originated in the US.

Key Findings:

  • Frequency: More than half of COPD patients reported a desire to discuss palliative care topics. However, the percentage of such discussions actually occurring ranged from 0% to 54%.
  • Timing: Discussions of treatment preferences were most likely to occur during the advanced stage of disease or when a serious decline had been noted. All pulmonologists agreed, however, that such discussions should be initiated when the patient’s condition is stable.
  • Healthcare professional: Patients generally desired to have palliative care conversations with a physician they knew and who knew them as a person, rather than with a clinically competent but unfamiliar specialist.
  • Topics: The majority of COPD patients rated the quality of palliative care discussions as low, particularly when end-of-life care topics were not discussed. Topics desired by patients included prognosis, spiritual beliefs and what to expect as death approached.
  • Education: The vast majority of patients were unaware of palliative care as an option. “Overall, patient education about palliative care was ranked as one of the most important topics by patients with COPD,” write the authors. “The most important educational area for end-stage COPD patients was the progressive and irreversible nature of COPD.”

Commonly Cited Barriers to Palliative Care Communication 

Patient-Identified Barriers:

  • Keeping the focus on staying alive
  • Uncertainty about which physician would be caring for them
  • Not knowing what type of care they would want
  • Limited understanding of COPD and palliative care
  • Avoidance of emotional distress
  • Denial of impending death

Physician-Identified Barriers:

  • Time constraints
  • Prognostic uncertainty
  • Lack of knowledge about the patient
  • Uncertainty about timing of and approach to conversations
  • Perception that palliative care is confined to the last days of life
  • Complexity of discharge planning for COPD patients

How to Improve Communication

  • Start early in the disease course.
  • Be prepared to discuss the implications of the diagnosis, prognosis and possible outcomes of life-sustaining treatments.
  • Ascertain the patient’s understanding of their condition. Include family members if the patient so wishes.
  • Identify and acknowledge patient preferences.
  • Share your medical opinion. Propose a treatment plan in alignment with the patient’s needs and wishes.
  • Provide support if the patient becomes upset or emotional. Negotiate any disagreements, so as to arrive at a shared decision.
  • Document all topics discussed and agreed upon, and work with other healthcare professionals to ensure the patient’s wishes are followed. Re-initiate conversations if the patient’s medical situation changes, or at the patient’s request.

“Healthcare professionals looking after COPD patients ... can use this review as an accurate reference for their day-to-day clinical practice,” the authors suggest. They call for further research to determine the best “new pathways and practices to improve outcomes for COPD patients by ensuring timely and appropriate integrated palliative care and advance care planning” through patient physician conversations.

Source: “Palliative and End-of-Life Care Conversations in COPD: A Systematic Literature Review,” ERJ Open Research; April 27, 2017; 3(2). Tavares N, Jarrett N, Hunt K, Wilkinson T; Portsmouth Hospitals NHS Trust, Portsmouth; NIHR CLAHRC Wessex, Southampton; and Faculty of Health Sciences, University of Southampton, all in the UK.


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