What to Expect When Your Loved One is in Hospice

For terminally ill patients, hospice care provides support during the final phase of life. Whether your loved one receives care at home or in a specialized facility, it’s generally intended for those expected to live about a year or less. The decision to stop treating an illness and instead focus on pain management and physical comfort in the last days, weeks or months of life is made in consultation with doctors.

Understandably, many families struggle with the impending death of a loved one, even in spite of watching illness take its unforgiving toll on body and spirit. Hospice, it seems, is admitting there’s no hope for recovery, and perhaps you might feel guilty for “giving in.” Keep in mind that there are few reasons why some patients might be discharged from hospice care.  If a patient’s condition improves, for instance, and is re-evaluated, doctors could agree the prognosis is no longer terminal and recommend resuming medical treatment.

However, you might experience an end-of-life phenomenon while your loved one is in hospice that should not be mistaken for recovery.  You might have heard friends or family recount stories of watching their loved one’s condition gradually deteriorate, only to witness a sudden burst of energy and awareness. In some cases, the patient awakens from a comatose state, able to speak and eat. Families often are surprised by the unexpected clarity of conversation during this time, or the strength of their loved one who might want to sit up in bed or, in rare cases, even walk around. The medical community now recognizes this as “terminal lucidity,” a term coined less than a decade ago by a researcher to explain the moments prior to a person’s passing when they seem to rally and are no longer weakened by illness.

The Hospice Patients Alliance  tells us there are two phases before the time someone passes. The pre-active phase of dying can last a couple of weeks, during which the signs that death is near are more prominent: less interest in social contact; lethargy and increased periods of sleep; loss of appetite; and shallow breathing.

The active phase of dying could last a day or two or three. Those signs include the inability to arouse your loved one; hands and feet become cool to the touch; the inability to swallow; and very irregular breathing.

Terminal lucidity could occur during either the pre-active or active phase, or it might not happen at all. It can give you a false sense of hope and the roller coaster of emotions can sometimes do more harm than good. But if your loved one experiences a pre-death rally of energy, cherish it for what it is, and for giving you those final moments.

We understand that watching your loved one decline can be distressing. We encourage family members to take advantage of the assistance and resources hospice caregivers can provide. They can help you navigate the process of death and dying as you witness it, offer counseling, and support you in your grief.

One resource we recommend is what’s casually referred to as “the little blue book,” a book written by a hospice nurse titled  “Gone from My Sight, the Dying Experience.” You can read more about it in this blog post.