Why Are Hospice Stay Lengths Falling?
One of the most frequent comments we hear from our patients and their families is, “we wish we would’ve known about hospice sooner.” This is both encouraging and heartbreaking feedback. It’s encouraging, in that patients and families see real benefits from their time in hospice. But it’s also heartbreaking, because it means most people could be getting more from their hospice benefits. And the statistics back this up.
In 2009, 4,850 U.S. hospice programs served 1.45 million patients and their families. That year, 38.5% of all deaths occurred under hospice care. Seven years later, 6,100 programs provided hospice care for between 1.6 and 1.7 million patients. So in the years between 2008 and 2015, both the number of hospice programs and the people they served increased. But during that same time period, the median length of stay fell from 21.3 days to 17.4 days. So what explains this growth in hospice access and the accompanying decline of length of stay rates? Well… It’s complicated.
Due to a few bad actors within the hospice industry, Medicare developed guidelines for a number of common end-of-life diseases. Many doctors now use those documents to judge signs of patient decline. Unfortunately, the symptoms of dying are not always consistent or predictable. As a result, a patient may not meet all of the Medicare guidelines until they are very close to death. So by the time a doctor certifies the patient’s terminal prognosis, and they’ve been enrolled in a hospice program, there’s little time left to experience all of the benefits the care can bring.
We expect doctors to exercise their best judgement in these situations. Perhaps a patient doesn’t meet all the criteria down to the letter, but if a doctor – using their years of training and experience – sees something different, shouldn’t they make their own decisions? Some certainly do, but as an industry many doctors don’t want to buck Medicare guidelines for fear it might put their license in jeopardy. Unfortunately it can come at the patient’s cost.
Family and Patient Resistance
Of course it’s not just a clinical issue. In many instances, patients and their families are often reluctant to ask about – let alone advocate for – their hospice benefits. Despite the incredible growth in the industry since the 1970’s, hospice care is still widely misunderstood. Many still perceive hospice to be tantamount to a death sentence. They don’t understand how hospice care improves patient and family satisfaction. They don’t see how much their loved one’s quality-of-life improves with a few symptom control measures. They don’t benefit from that extra time with their loved one hospice care often provides. Instead they imagine rooms filled with people waiting to die. Hopefully many of these people will learn the truth after they’ve experienced hospice first-hand. And as more people experience this unique style of care, those misconceptions will hopefully begin to recede.
What’s the Solution?
The problem of declining stay lengths is part structural and part perception. Southland Hospice is tackling the structural problem in part by developing our own signs of decline guidelines document patients and families can use to begin to judge their own health status. It’s our hope that as they begin to see those early signs, they’ll be more likely to seek out their rightful benefits. To solve the perception problem, the industry as a whole must continue educating the general public about the benefits hospice programs bring patients and families. It’s our responsibility to do what we can to increase access so that everyone receives the benefits they need, when they need them.