End of life care is as tender, emotional, and difficult as it comes. There are so many different factors that lead people to hospice, but the common thread is the search for comfort for both dying patients and the families accompanying them on the journey. Hospice workers take on patients knowing that hope is essentially gone and all that is left is to ease pain and provide support until the end.
Yet hospice is not always the end. In fact, about 20% of hospice patients are discharged alive each year. Of these, about a third chose to leave the program, which means that nearly 13% of patients relying on hospice services are expelled from the program. It sounds like this means terminal patients are recovering, but sadly around 40% of these people die within six months of being released. If you’re not doing the math, that’s 5% of people who qualified for hospice dying without services. Fifty-five thousand people, every year.
Hospice is supposed to be a comfort – pain management, grief counselling, an easing of suffering and the fear of death. It seems worse than cruel to offer help to these desperate people and then yank it away, leaving them to find their own way again. And it is happening more and more often. Between 2002 and 2012 the number of people discharged from hospice rose by fifty percent. I’m sure the reason will come as no surprise: budget cuts. Many patients have their care covered through Medicare or Medicaid. In the year 2000, Medicare spent $2.9 billion on hospice; in 2009 the bill rose to $12 billion. And now the budget is shrinking. CMS has had to get tougher about approving payments. Payments that can be held up for months (or more) while being reviewed put small hospice centers under a financial strain. Rather than risk bankruptcy from delayed or denied claims, they are getting stricter about who receives care.
Hospice is intended for patients who have less than six months to live. If their prognosis improves while under hospice care, it is legal (or in CMS’s case, required) to discharge them. Whether it is ethical is another question, actually one of some debate. The difference between true recovery and a temporary plateau is hard to determine, especially over just a few weeks. Even though people can be readmitted if their condition worsens, the trust is gone. Hospice care cannot be a yo-yo, jerking people up and down, leaving them uncertain what each week will bring. This is not comfort and support, but torture at the worst time in families’ lives. Yet, where will the money come from to pay for services? Doing the ethical thing can put for-profit hospice centers out of business, and then all of their patients suffer. Where is the line?
It is a terrible thing to have to judge how fast a person should die.