Abstract
We have all been consulted on the patient who is actively dying, whether due to a long-standing illness such as cancer or congestive heart failure, or an acute insult like a myocardial infarction or cerebral vascular accident. The patient is in the intensive care unit and all of the consulting physicians are in agreement that he or she has an extremely poor prognosis. The palliative medicine team is consulted to see the patient and their family to assist with clarification of goals and end-of-life care.
After sitting and talking with the family, along with the patient if possible, it is often agreed that hospice is the best choice for the patient. He or she can live out the rest of their days in comfort, not attached to equipment, being awoken by the hospital staff every two hours to give medicine, check vitals, move them, or one of the many other responsibilities that we as health care providers have.
It usually occurs around the day of discharge, after the arrangements have been made to either transfer the patient home or to an inpatient hospice unit where they can spend their final days surrounded by loved ones. All of the family members present are in full agreement that this is the best choice for the patient, and if the patient is able to express their wishes, they too are in full agreement.
This is invariably when the admitting team sends out a page to the palliative medicine team that the discharge has been put on hold. It is typically the son or daughter who lives across the country and hasn't seen or spoken to their loved one in years who comes riding in and immediately wants to speak with the physician who has helped the family decide that it is best to refer their loved one into hospice. Everything that you have been working on to help calm the family and reassure them that they have made the correct choice is now in disarray. The one family member who is not in agreement with the plan has arrived, and the family begins to question whether or not they are making the correct decision.
The entire process of explaining the patient's poor prognosis has to be revisited. The numerous consultants who had signed off of the case are now reconsulted to give their professional opinion that the patient does indeed have a terminal illness and their outlook is extremely dire. All of the hospital equipment that had been discontinued must now be resumed.
What bewilders the physicians who are caring for this patient is why here and why now? What brought this person out of hiding? Perhaps it is the fact that he or she never had the chance to tell their loved one how much he or she cared for them. Maybe it is related to unresolved guilt about an issue from the past? Was this person labeled the “black sheep” of the family and now feels obligated to make a contribution? Often we just sit on the sidelines and do everything we can to help, never knowing the answer to this question.
Although we may not understand it, at least it now has an official name.