Author Information
President, Board of Directors, 2000, 2001 HPNA
How often we experience "last minute" referrals for hospice or palliative care when a very sick and dying person is admitted to hospice with great effort, only to die 3 days later. Can we even make a difference in this situation? Or, worse, when the initial contact is met with news that the patient just died, we wonder, "Did the patient die well? Will the family cope in bereavement?"
Palliative care experts refer to this pattern of late referrals as "brink-of-death care," as compared to end-of-life care. Hospice care providers cynically feel as though they are offering "drive-by hospice care" as they move from to one patient to the next, committed to care, but rushing to get through the visit, documentation, and follow-through[horizontal ellipsis]only to hear of the death the next morning before plans could be enacted.
End-of-life care providers are in a desperate and apprehensive state of concern for the patient and family, as well as for their survival as an agency, trying to manage the burdens placed on them by the short length of stay phenomenon. This concern is warranted. The shorter our involvement with the patient and family, the less time there is to establish a relationship and identify and address their needs. As providers, we believe that the "ideal" hospice or palliative care referral is initiated months before the anticipated death. The team and family are given adequate time to address physical, psychosocial, and spiritual issues. The ensuing death is well planned and the family is prepared and ready. But the unfortunate reality is that the "ideal" referral is rare. We have all experienced the requests that are characterized by poor communication, physical symptoms that are neglected, and patients and families who suffer from multiple hospitalizations with little caregiver support. If this wasn't enough, the patient's prognosis usually is poor with death expected in 1 week or less. These are the referrals that challenge us all on a daily basis.
With late referrals, we agonize over the fact that the patient and family may not have an optimum death experience. But is this necessarily what patients and families experience? In fact, family satisfaction processes reveal, in many cases, that families are generally very pleased with the care they received and often report that "those last 2 days with hospice were just wonderful." While the care team may have a long list of unmet needs and problems, these are not necessarily the problems that were most important to the recipient of care. It would appear that for many dying people, their needs can be met in days, or even hours. This is an area that needs to be investigated further.
On September 11, 2001, the world witnessed the sudden death of thousands of people. A dramatic and heart-wrenching occurrence that day were the phone calls that many who were trapped in the buildings made to friends and family. Realizing that they were about to die, they picked up the phone and called those people who were important to them to say "I love you" and "good-bye." If time allowed, other thoughts were communicated, but love and goodbye were the consistent messages that were sent. The need to communicate love and say goodbye transcends all end-of-life circumstances: terminal illnesses drawing to a close; wartime injuries where the soldier lies on the battlefield knowing that death will come soon; sudden illness or trauma where death is imminent; even suicide, when scripting last words to loved ones is often the final task.
People with serious illnesses do not always need a great deal of time to do what they have to do, as long as they have someone to help them. Dying individuals need the assistance of professionals to help them accomplish their goals. They need to know how much time remains so they may prioritize their list and express their love and goodbyes before it is too late. Although this work may seem rushed and uncomfortable for us, that is not necessarily the case for the dying and their families. Those in denial throughout the course of the illness may actually be unable to complete these tasks until the last few moments of life.
There are efforts on the national level to expand the prognostic time frame requirement for hospice admissions in an effort make hospice more accessible to those who would benefit from its service. There is also work to seek reimbursement for palliative treatments for patients enrolled in hospice programs. These efforts are of paramount importance, as more time would certainly benefit all. However, for some, procrastination does not always meet with failure to complete life's important tasks.
While hospice and palliative staffs become overwhelmed and discouraged with the short length of stay, we must examine the role that is played by our presence and work. Perhaps it is our need to care for patients longer, but that is not necessarily the patient's need. It is good to remember why we entered end-of-life care: to help people convey their love and to say goodbye. This does not take a long time. When there is little time left, the important work can still be accomplished.