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When someone is diagnosed with a life-limiting disease, every one of us absolutely and rightfully so, hopes for a cure. Unfortunately, not all treatments prove effective for everyone. Even with modern medical technology, some diseases are still not curable. I’ve often heard the words “treatable but not curable.” Therefore, when individuals suffer from an advanced disease or illness, treatment has not provided the hoped-for cure and/or the disease continues to progress; hospice care is offered as the next level of care.

Often, one of the greatest fears of someone experiencing an advanced terminal disease is to spend the remainder of their days, however long or short that may be, in and out of hospitals and emergency rooms. Loved ones do not want to leave them; they want to spend every minute with them, yet it’s often exhausting to spend days and nights on end on a cot or chair. Even if they go home, they usually arrive back at the hospital early or stay late to be present when the doctor rounds. How often have we heard a sick patient express concern about their loved ones driving back and forth, not resting as they should, not eating right, etc?  There is also a significant concern for pets left at home for extended times without their family. 

In comparison, hope for someone on hospice is usually defined as having their pain and symptoms managed while spending quality time with their family, friends, and pets in the comfort of their own home. Hospice is a philosophy of treating the patient, not the disease. Hospice places comfort, peace of mind, fulfillment, and quality of life instead of continued unsuccessful treatment.

Even with this said, there still seems to be a need for improvement within our population of when the right time to refer to hospice is. Hospice experts agree that patients and their families benefit the most when they receive hospice care for at least three months or more, but the average stay is less than two months, with most often stays of only a few weeks or days. Thirty percent of hospice patients die in seven days or fewer, according to the National Hospice and Palliative Care Organization, which worked with the Brown researchers to survey more than 100,000 families from 631 hospices. 

Therefore, hospices cannot be as effective, and patients and families cannot reap the full benefits of the service when patients are referred with only a week to live. People who have experienced its benefits emphasize that hospice is not actually about dying – it is about living the best possible life until death. In many cases, families are not aware of what benefits and services they are missing and do not realize how hospice could have made a world of difference in the comfort and quality of life of their loved ones.

Patients and families wishing to receive services from a particular hospice should communicate their choice of a hospice agency to their referring physician or hospital, as it is always the patient’s right to choose. 

According to state and Medicare requirements, all hospice agencies must offer the same services. However, the agency’s location is vital, especially considering response time for after-hours, holidays, and weekends. It’s always annoyed me, especially from out-of-town doctors and hospitals, when our local citizens are referred to hospices, though nationally known, do not have a local agency. Because of the distance, there have been times when patients and families have waited hours for the hospice nurse to arrive at a home. Therefore, the location of an agency and its staff matters. That said, if you or your loved one find yourselves having the hospice conversation with your provider, please don’t think of hospice care as “giving up hope,” rather view it as a redirection of hope. Shift your focus from how many more days you can live, to how much better you can live the days you have left with your loved ones.

“I was naked, and you clothed me, sick, and you took care of me.” Matthew 25:36A NIV

— Vickie C. Wacaster is a Patient and Hospice Advocate for Aveanna Hospice (formerly Comfort Care Hospice).