Changes in Hospice Care Herald Greater Use of Doulas
In the last couple of weeks, I read two articles that have had me thinking about changes in hospice care and their impact on the development of the end of life doula field. One article, This Was Not the Good Death We Were Promised, appeared in the Sunday Review section of The New York Times on January 6, 2018. The other article, Hosparus on forefront of aging care innovation, appeared in the INSIDE Louisville online publication, which was then highlighted in Hospice News Today, an online clipping service. Coming from very different directions, these two articles reinforced my belief that end of life doulas are destined to play a much larger role in hospice care in the near future.
The Times article was the story of a hospice patient told by his daughter. From her own description, the hospice care of her father went very well until the night before he died. He then had a spike in abdominal pain that the family wasn’t able to manage with the medications they had on hand. When they called hospice with their crisis, the hospice failed to help them. Over the last 22 hours of this man’s life he had periods of severe pain that the family had been promised would not happen. Finally, in the mid-afternoon of the next day he slipped into a coma, thus alleviating any need to deal with his pain. He died several hours later.
I certainly understand how those terrible hours leading to his coma overshadowed all the good care he and his family received up to then. The foul up in this case centered on misguided expectations, unusual circumstances for the hospice staff, and bad management of the situation by the hospice administration. Sometimes, even with the best of intentions and very honest discussions about services and what to expect, things can still go wrong and deaths can wind up messy. Dying isn’t a scientific, predictable process.
Unfortunately, stories about problems in a particular dying process get more play in the news than the smooth, well-delivered services that are typical of hospice. I have worked at a number of hospices as a social worker and manager, so I know from the inside that hospice is an amazing service delivered by incredibly caring people, who often make personal sacrifices for their patients. In fact, I think hospice is one of the more wonderful services in the healthcare industry. I’m still amazed that Congress ever approved it.
What this article reflected was an issue that hospices across the country face today. They just aren’t reimbursed enough by Medicare—the primary insurance coverage for hospice patients—to be appropriately staffed with nurses, social workers, and chaplains. That was part of the underlying problem for the hospice that served the man discussed in the New York Times article.
Medicare was never prepared for the number of patients that would turn to hospice at the end of life. The Medicare benefit was passed in 1983, when healthcare costs, demographics, and the makeup of families was quite different than today. To give you an idea of how staggering the changes have been, in the year 2000, hospice served 513,000 patients. In 2014 hospice served nearly 1.7 million patients—more than three times the number. And each year since then, the number of patients hospice served has continued to grow. The growth in expenditures for hospice care has been even more explosive. Medicare payments for hospice care in 2000 were $2.9 billion. By 2015 that number had grown by more than five times to $15.5 billion, according to the National Hospice and Palliative Care Organization (NHPCO).
The astronomical rise in hospice expenditures has led the government to reduce the payments it makes to hospices and persuade them to cap future payment growth. As a result, hospices struggle to meet their costs and have to keep cutting expenses. That in turn results in much tighter staff to patient ratios, which can at times result in poor access to nurses and other hospice team personnel. When those access problems occur at a critical time in someone’s dying process, we end up with negative stories in the press, like this recent one in the New York Times.
In spite of the struggles hospices encounter in meeting their expenses, and in spite of the less than optimal staffing, the overwhelming majority of families that have used hospice give it very high marks. The writer of the New York Times article stated that there have been 3,200 formal complaints about hospice over the last five years. Although that sounds like a large number, when you consider that hospices in that same time period served about 8 million patients, you can see that complaints were a fraction of one percent of the total number of cases. Government surveys of hospice care consistently find that 89% of people questioned rate the care their loved one received at 9 or 10 on a scale of zero to 10, with 10 being extremely good care.
Still, one thing is glaringly clear. Hospices today just don’t have the staff to allow for the kind of on-going expert support and guidance that is generally needed in the last days of life. Even if nothing untoward occurs, families are still very much alone as they deal with intense care demands and the emotional upheaval that is commonplace at that point in the dying process.
As hospice continues to struggle with lower reimbursements and an increasing population of dying people—10,000 people a day reach the age of 65 in this country—the professional staff will have ever greater difficulty being present for their patients in the ways they should. One of the obvious solutions to this problem is end of life doulas, who by the very nature of their role, spend hours each day at the bedside of the dying. This solution is beginning to get recognition in hospice programs across the country. One sign of this is the willingness of the NHPCO to start talking with end of life doulas to see how it can support the utilization of doulas among their member organizations.
The second article I mentioned at the start of this piece, dealt with a new and innovative expansion of normal hospice services. Hosparus, a large non-profit hospice in Kentucky and South Indiana, is experimenting with a service that provides palliative care to patients who are outside the eligibility for hospice. Hospice care requires a prognosis of six months or less of life, if the terminal condition were to progress as expected. The palliative care pilot program at Hosparus will accept patients who may have a longer prognosis, may still be receiving intensive treatment, or who don’t even have a terminal diagnosis.
The palliative care services through Hosparus are not covered by Medicare or Medicaid, so Hosparus gets paid by private insurers or the patient directly. So far, the program is suffering losses, but the hope is that early intervention with a holistic palliative care approach, will mean a smoother transition to hospice care when the patient is eligible. Hosparus also believes that overall costs will be lower, because the patient and family are better prepared to deal with end of life care issues and demands. Hosparus is also hoping that the government insurers will eventually reimburse them for the care, when they see proof that costs go down with this approach.
Hosparus has a daily census of 1,000 patients. So, it is in a good position to analyze this new approach and make sure it addresses the needs of patients and families, as well as the financial needs of the Medicare system.
The experiment at Hosparus is one to watch over the next few years. Beyond its obvious implications for better care at the end of life, if more hospices develop similar programs, I think it will lead to greater use of doulas. Programs that work with terminal patients earlier in their disease process will want to take advantage of the work doulas do around life meaning, legacy, and planning. It is clear that patients who work on those matters experience less depression and anxiety, and have less pain. This makes them less demanding on the hospice team and less costly to serve.
One of the biggest problems in end of life care today is that people take advantage of hospice way too late in their illness. Fully one-third of patients on hospice care die within the first week. Because of the short stays on hospice for many patients, some of the wonderful work doulas can do around meaning and legacy often doesn’t happen. If programs like the one at Hosparus become more prevalent, doulas will have a great opportunity to work with patients earlier and to demonstrate the amazing benefit of their services.
These two phenomena, less than optimal staffing at hospices due to the squeeze on finances, and the experimental introduction of palliative programs at hospices, are likely to be forces that propel the doula field more into the mainstream of end of life care. This is one of the reasons INELDA is offering substantially more trainings in 2018 than in 2017. We need to train as many doulas as we can, so they are there and ready to serve the dying, when hospices wake up to the incredible benefits of the doula approach.