The Liverpool Care Pathway (LCP) was developed in Britain in the late 1990s to help ensure the dying receive excellent care no matter where they were dying. The LCP became the “gold standard” of care for those identified as dying. When a person was identified as dying, the routine orders associated with the LCP provided patients ready access to medications and care to address common symptoms and issues. Knowing the challenges to access physicians and get appropriate orders for the dying, this sounds like a wonderful solution. However, in the last five years the LCP received much criticism. Why?
People who were identified as actively dying were placed on this “pathway” (strange term). People expressed concerns that people who were not actively dying were started on this pathway and their death was hastened. People saw a change in their loved one and may have attributed the change to the medication rather than realizing the change was because the person was dying.
Although the situation is more complicated than this, one of the major pieces that was missed was excellent communication.
Families did not realize their loved ones were dying. It is fascinating to me, continues to be fascinating to me that families often do not really understand this fact. Even in a long term care facility, even when the person is eating less, sleeping more, has repeat infections, and decreased social involvement… even then, families may not recognize that their loved one is dying. They need help to understand this.
Only after really understanding that someone is dying can the discussion progress to discussing ways to help the person to be comfortable in their dying.
In an blog post, Philip Barry states that the problem with the Liverpool Care Pathway is that when doctors “put people on the pathway” they did not do the “work” of discussing with family the changes that they saw in the patient’s condition, did not help family to clarify the goals of care, and did not seek understanding or support of a new focus of care.
In any setting we can learn from this mistake. We all need to remember that the patient AND the family are the unit of care. The work of preparing a person for death needs to include communicating with the family about changing condition, changing needs, and clarifying goals of care.