Hospice Obligations and the Rights of Patients
What to Insist on and Receive, Especially If Medicare Pays the Bill
Sep 1, 2009
Medicare and Medicaid, which pay for most care at the nation's 4,700 hospice agencies, reimburse for all treatment, except occasional small drug copays and room and board when the patient is in a facility. Hospice patients have specific rights:
The Right to Appropriate Pain Management
Federal guidelines and most state laws regulating hospice require an agency to make every reasonable effort to control pain. If a patient's regular doctor does not prescribe appropriate or sufficient pain medication, the hospice medical director (who is an MD) is authorized and actually required by law to override the attending physician. "A hospice must...make...drugs...routinely available on a 24 hour basis...to meet the needs of individuals for care that is reasonable and necessary for the palliation and management of terminal illness and related conditions." *
Uncommunicative patients usually telegraph their suffering to an observant nurse or family member. Not all these signs and symptoms of pain occur in all patients, but some occur in most:
- Systolic blood pressure higher than the usual level for the patient
- Increase in heart and/or breathing rate
- The patient tightly holds his or her arms or legs or a portion of the body
- The patient instinctively "guards" their position when moved or turned to protect certain parts of the body from pressure which would cause increased pain
- The patient moans, raises his voice or calls out
The Right to Appropriate Levels of Care
Medicare and Medicaid, which pay for 89% of hospice care in the U.S., require providers to offer several service levels: periodic routine visits when patient symptoms are manageable; intense around-the-clock care when symptoms become acute; and respite, which is a "vacation" for caregivers.
However, Medicare does not hold hospices accountable, and agencies seldom provide more than routine care. Hospices are the only providers in the vast Medicare payment system that do not have to report the actual content of services they furnish, what resources they use, or the outcomes of these services. They simply bill for the number of days patients are under their care, and Medicare reimburses them anywhere from about $140 for every day the patient is enrolled (whether seen by staff or not), to as much as $816 per day.
According to a June, 2008, report to Congress by MedPac, a Medicare advisory agency, in 2005, the latest year for which data are available, U.S. hospices spent on average $53.67 per patient per day on nursing care, and enjoyed margins from about $33 to as much as $101 per patient per day. On average, U.S. hospices admit 580 patients per year, and attend to 90 on any given day, the majority of which have non-cancer diagnoses.**
In its report, "Reforming the Delivery System," MedPac theorized that the more profitable hospices likely provide lower levels of nursing care than their less profitable (and less efficient) counterparts. "A hospice...can achieve lower nursing costs...by using more home health aides and fewer nurses and by providing fewer nursing visits..."
Consequently, with no Federal watchdog monitoring quality or frequency of service, patients and their families have little recourse but to rely on the reputation and integrity of a hospice agency, and switch providers if they feel they are not receiving adequate care.
The Right to Revoke Hospice
Patients may revoke hospice and return to "ordinary" Medicare at any time, as often as they wish, and for any reason. For example, they may disagree that hospice care is even appropriate, especially for non-cancer diagnoses. The revocation must be in writing. A patient who revokes forfeits Medicare coverage of his or her hospice benefits for the remainder of the 60-day or 90-day "election period" they were in at the time of revocation.
The Right to "Ordianry" Medicare-Covered Treatment For Non-Terminal Conditions
A hospice patient suffering from a medical issue not associated with the terminal condition is entitled to Medicare-covered treatment without having to revoke hospice.
The Right to Change Hospices
Medicare allows patients to change hospices once in each 60-day or 90-day election period. The most common reason for switching: poor care or general dissatisfaction. For example, registered nurses should make skilled visits to hospice patients about 8 times per month, based on a national average, and non-nursing clinical staff about 9 visits every 30 days.** (The U.S. data do not adequately address the length, intensity or quality of visits).
Patients and/or families who are dissatisfied with the frequency and/or quality of nursing visits are free to switch providers. The hospice-business environment is increasingly competitive: for-profit enterprises now outnumber non-profits. What started as a grass-roots movement in 1974 now is big business: over $10 billion a year.
* Department of Health and Human Services, Centers for Medicare & Medicaid Services, 42 CFR Parts 418.50 and 418.54, Medicare and Medicaid Programs: Hospice Conditions of Participation; Final Rule, June 5, 2008
** National Hospice and Palliative Care Organization, FY2007 National Summary of Hospice Care Supplement: State Comparison Report, page 25.
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