Saying Goodbye is Hard. Hospice will make it easier, if Medicare will let you in.
By Rachel ArmstrongPublished October 30, 2019
If there is anything certain in life, it is death. Yet 70% of America has no knowledge of palliative care, which focuses on relief of the symptoms and stress associated with serious illness common at end-of-life. People often die without receiving care consistent with their wishes, likely due to a lack of awareness or discussion surrounding the process of dying. In 2014, the World Health Assembly recognized palliative care as essential for improving quality of life, human dignity, and comfort for individuals and called for its increased use in the years to come. While palliative care in U.S. hospitals has increased in the 2010s, still less than half of central southern states incorporate these programs. When “Miracle Cure” products pray on the elderly enough to demand a warning from the Federal Trade Commission, it’s no wonder palliative care isn’t everywhere in the nation; no one wants to admit those they love, and they themselves, are going to die.
Frankly, a palliative care referral admits that very fact. It’s not easy for everyone involved. Even when doctors provide this recommendation, they are overcoming their own fears as well: Referrer reluctance hinges on the fears of upsetting patients, being perceived as abandoning them, or feeling a sense failure. These worries prevent access to the continually growing documented health benefits of early palliative care, and the cost savings associated with its increased use. One of the most familiar elements of palliative care is the infamous final destination: hospice.
Hospices, unlike palliative care in general, are geographically widespread across the United States. Hospice care has been associated with quality end-of-life care for patients and more favorable experiences for family members involved. Yet, the Medicare Hospice Benefit (MHB) is one of Medicare’s smallest programs. Hospice underutilization is stark, particularly for minority populations. Even when controlling for sociodemographic variables and clinical features, hospice use by minorities is significantly less than white patients. For such a reputable program that improves the well-being for all involved, and has been proven to be cost-effective even with longer stays, society has repeatedly ignored the needs of the dying by waiting too long for palliative care, and particularly hospice.
Not only is hospice being underutilized across all populations, especially minorities, but when hospice is used, it is too little too late. For a Medicare patient to receive hospice care, two physicians must agree that their prognosis is less than 6 months, and the patient must accept comfort care measures only. With these conditions satisfied, hospice care is completely covered. Cost is infrequently a barrier to hospice. Yet in 2016, the median time spent in hospice under Medicare coverage was 70 days. 30% of stays lasted a week or less. This over 100-day difference between recommendation and actual use is staggering. To explain this gap in care, the prognosis requirement for hospice must be examined.
How does someone estimate when a person will die? While there are many different methods, the typical prognosis is overestimated. Nicholas Christakis, MD, PhD, has extensively analyzed the chronic overestimating in prognosticating. In one of his studies, only 20% of predictions were within 33% of actual survival, and doctors on average overestimated survival by a factor of 5.3. Physicians are afraid and often unable to determine an accurate prognosis, at the expense of their patients’ end-of-life treatment and dignity. The prognosis requirement hinders the ability of patients to receive valuable care. The philosophy of hospice should be reimagined. Instead of limiting hospice to those in immediate possibility of dying, the MHB should be extended to those who are deemed clinically appropriate for an interdisciplinary team that provides only palliative care. While this may seem like a radical change, patients are currently already able to extend their stay after 6 months, or end their stay with no penalty, again showing the 6 months guideline is superficial.
The President and CEO of the National Hospice and Palliative Care Organization has called for the removal of the prognosis requirement, claiming the added flexibility will increase quality and satisfaction outcomes. Physicians themselves are often reluctant to base patient-care choices primarily off their prognosis determination. Some diseases are particularly difficult to predict, notably congestive heart failure, the leading cause of death in the United States. If the discussion of hospice, or palliative care in general, is avoided because of the inability to determine prognosis, patients are veiled from important forms for maintaining dignity and autonomy throughout end-of-life, notably Physician Orders for Life-Sustaining Treatment (POLST). Shifting the discussion surrounding hospice from prognosis-based to goals-based is the simplest way to ensure the delivery of high-quality patient-centered care.
There is of course a financial concern with removing the criteria; will hospice become overused, and thus more expensive, like many other elements of our healthcare system? While an increase in use is to be expected, hospice will ultimately be more cost effective than other types of care. Total hospice costs for a Medicare patient are on average $12,000. Hospital inpatient charges for Medicare patients average $6,200 per day. Even with an increase in hospice care, the decrease in inpatient charges for the most expensive patient population will certainly make up for the slight loss. Regardless of costs, the benefits to end-of-life care provided through hospice should be available for those terminally ill and nearing the end-of-life. Whether the end be 6 months away, or more, palliative care delivered through hospice is an effective way to reform the societal need to care for the dying.