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Even after all these years, many people think that hospice should only be called when a person is on their deathbed. This is not true. The design of hospice is to help patients and families cope with an advanced terminal disease. A person may enroll in hospice for 6 months or longer when they meet the established criteria. Given ample time, hospice helps patients and families reach a place of reconciliation, control symptoms, restore or maintain quality of life, and “finish up” the important things in their lives. Therefore, it is fair to say with late referrals (people referred for only days or a few weeks), patients and families often do not receive the full benefits of the hospice program as it is intended.

Interestingly, however, with even very short hospice stays, most family members of hospice patients, including myself, say a short stay is better than not having hospice at all. Even with short stays, the hospice team can often get the most pressing physical symptoms under control and be with the family to give them support and peace of mind.

According to data from the National Hospice and Palliative Care Organization, it has become apparent that in recent years, hospice programs have experienced an epidemic of late admissions and very short-stay patients. Most patients are referred to hospice only days before their deaths. When this is the case, most often, the patients are in an acute medical crisis, and their families are in emotional turmoil. Even though the Medicare Hospice Benefit is explicitly designed to cover the final six months of life, half of all hospice patients nationwide are enrolled less than three weeks before their deaths, and 37 percent spend less than a week in hospice.

Consequently, hospice patients and families often say, “If only we had known about hospice sooner.”

For this reason, hospice encourages everyone to discuss and make decisions based on what is important to them in the last months of life. Although some may want every intervention, aggressive treatment, ICU stay, etc., possible, others may decide what they want is relief from pain, shortness of breath, and other symptoms so they can focus on the matters important to them.

Despite the disease, the quality of each day of life is essential. With pain management and symptom control, the hospice’s goal is to keep our patients functioning and comfortable until the very end of their journey. Every person needs to decide based on what is important to them in the last months of their lives. Advocate for yourself and your loved ones.

I consider it an honor to speak with you if you have any questions about hospice. I may be reached at 334-892-4123.

“The quality of your life is built on the quality of your decisions.” Wesam Fawzi

— Vickie C. Wacaster is a Patient and Hospice Advocate for Aveanna Hospice.