Chronically critically ill patients, a population whose needs and challenges were the sole subject of a recent issue of the journal Respiratory Care, have a very high mortality rate, and survivors among the group suffer with severe impairments and functional dependence. For the caregivers of these patients, the effect can be devastating. According to one article in the journal, “it is difficult to imagine a group of patients with greater need for high-quality palliative care.”

 Graphic depicting the spectrum of palliative care as seen in http://www.slideshare.net/Kindredhealth/palliative-care-across-the-continuum Graphic depicting the spectrum of palliative care as seen in http://www.slideshare.net/Kindredhealth/palliative-care-across-the-continuum

This article points out that early integration of palliative care for these patients can be highly beneficial, particularly in helping patients and families define goals for care and manage the emotional issues that arise when a patient is chronically critically ill.

One common challenge with chronically critically ill patients (defined for this journal issue as those patients requiring 21 or more days of mechanical ventilation for six hours or more per day, with a one-year survival of 40 to 50 percent) is managing the expectations of, and communicating effectively with, patients and family members. The article points out that family members often misinterpret medical interventions such as the placement of a tracheostomy tube as positive signs that the patient is improving.

New guidelines suggest a shared decision-making process and the involvement of representatives from several disciplines (including social workers, chaplains, respiratory therapists and others) working with the family to understand prognosis and options. The acronym NURSE has been suggested as tool for structuring effective communication with the family:

  • Name the emotion
  • Express Understanding
  • Show Respect for the person having the emotion
  • Communicate Support
  • Explore the emotional experience in greater depth

Studies have shown that families often misinterpret discussions of grave prognosis as a result of their use of a complex psychological defense mechanism. One study found that families were much more optimistic about a patient’s chance for survival at one year – 90% vs. the physician’s 44%. This speaks to an important aspect of communication that providers must address.

“Our job as clinicians is to prepare the families for the worst outcome while supporting their sense of hope,” said John Evans, NP, at BridgePoint Supportive Care in Denver, the palliative care division of PeopleFirst Homecare and Hospice. “In palliative care, we often ‘plant the seed’ of what may come, and nurture the patients and families as the seed of understanding takes hold.”

One tool that palliative care providers and attending physicians can use is to allow the patients and families time to talk about their concerns and feelings. Studies show that when physicians and other clinicians acknowledge patients and family members’ emotional responses to situations, there is a greater sense of satisfaction on the part of the patient and family. Clinicians can enhance this by allowing their patients and families time to talk, and by responding using empathetic statements. When delivering bad news, providers’ discomfort often keeps them speaking, and thus avoiding having to respond to difficult emotional situations.

References:

Nelson JE, Hope AA. Integration of palliative care in chronic critical illness management. Respir Care. 2012 Jun;57(6):1004-12; discussion 1012-3. Review.

Graphic depicting the spectrum of palliative care as seen in http://www.slideshare.net/Kindredhealth/palliative-care-across-the-continuum