End-of-life care in nursing homes still needs improvement
Hospices slow to reach out to nursing homes, achieve common ground
Hospices are not the only health care providers caring for the dying. More people die in hospitals and nursing homes than under the care of hospice workers. Still, end-of-life care remains an afterthought as clinicians focus on keeping people alive rather than shifting their approach when death is imminent.
While nursing homes struggle with improving end-of-life care for its residents, hospices have struggled too — not with improving end-of-life care for patients, but with bridging the gap between them and their nursing home counterparts. In short, their expertise remains largely inaccessible to those outside their industry.
"End-of-life care needs to be improved everywhere," according to Ernestine Pantel, DrPH, director of administrative service programs in occupational and physical therapy at Columbia University’s College of Physicians and Surgeons in New York City. "Hospices have the expertise in palliative care, and they need to bring that expertise to nursing homes."
While this proposition is logical and simple, hospices and nursing homes have been slow to join forces. Regulatory restrictions and divergent approaches have been significant hurdles for both sides. The challenge is for the two disciplines to coordinate care while reconciling differences in policies and procedures.
Last year, the Office of Inspector General singled out hospice and nursing home relationships as having potential for fraud and abuse, raising the barrier that prevents more hospice-nursing home arrangements. (See related story on p. 40.)
Hospices must contend with the six-months-or-less diagnosis requirement for hospice admission, while nursing homes must comply with strict requirements that focus on curative efforts. Nursing homes operate under strict assessment schedules that are tied into reimbursement, while hospices are not. Even though a nursing home resident is under the care of hospice, the nursing home is still responsible for submitting routine patient assessments, called the Minimum Data Set (MDS). Because hospice staff are not experienced in using the MDS, proper filing of the MDS is made difficult.
"Hospices have to understand the world view of nursing homes. They are understaffed, and they are one of the most regulated industries," says Joan Teno, MD, associate professor of community health at Brown University and associate medical director of Hospice Care of Rhode Island in Providence. "Hospices need to build a bridge so that there is shared ownership of patient care and mutual respect of what each other does."
Hospices can be guilty of being insensitive to the plight of nursing homes, says Pantel. While hospices have developed a reputation for being experts in end-of-life care largely by promoting the importance of palliative care, hospice workers providing patient care in nursing homes sometimes leave the impression that care was substandard until the hospice team arrived.
"Nursing homes also see themselves as providers of end-of-life care," says Pantel.
For hospices, nursing homes represent an underutilized referral source. An estimated 13,369 Medicare hospice beneficiaries reside in Medicare/ Medicaid-certified facilities on any given day. For the most part, hospice beneficiaries are being served in nursing homes that do not have specialized hospice units because only about 1.3% of nursing homes have such units. Nursing homes with higher percentages of residents receiving the hospice benefit are more likely to be for-profit, belong to a chain, and not provide full-time physician coverage. The proportion of residents receiving the hospice benefit has increased in counties with fewer certified nursing home beds and areas with more certified hospices, for-profit hospices, or larger hospices.
A 1998 five-state study underscored the need for hospice expertise in nursing homes. It showed widespread instances of untreated daily pain among elderly nursing home residents with cancer, especially among the oldest and minority patients. The study, which was published in the Journal of the American Medical Association, concluded that there was dramatic room for improvement when it comes treat and managing pain in nursing home populations.1
Researchers examined data collected on 13,625 cancer patients aged 65 and older discharged from hospitals to 1,492 nursing homes from 1992 to 1995. In total, 4,003 patients reported daily pain. Of those, 16% received a simple analgesic such as aspirin or acetaminophen. Thirty-two percent were given codeine or other weak opioids, and 26% received morphine. However, 26% of patients with daily pain received no analgesics, not even an aspirin or acetaminophen tablet. Patients who were 85 or older and experienced daily pain were about 50% less likely to receive any analgesic than those aged 65 to 74 years. Only 13% of patients aged 85 years and older received codeine or other weak opiates or morphine, compared to 38% of those aged 65 to 74 years.
African-Americans were 50% less likely than Whites to receive any analgesics. Although not statistically significant, a similar trend in the data was noted for Hispanics, Asians, and American Indians.
Education will bring disciplines together
Both Teno and Pantel agree that educating nursing homes about hospice care is the key to bringing the two disciplines together. For hospices, that can translate into increased referrals from nursing homes.
Hospices must understand that nursing home staff not only lack training in palliative care, but that strict regulations prevent them from using drugs the same way hospices use them.
In addition to regular inservice training, hospice workers need to have an ongoing training component. For example:
• Bring written literature about your hospice and its mission to the nursing home when visiting a patient to help educate new nursing home employees who have not yet sat through hospice inservice training.
• Invite nursing home staff to your hospice’s hospital inservice training.
• Make your palliative care services available to nursing homes. Even though a hospice cannot receive payment unless the patient has a terminal illness diagnosis, this is excellent goodwill that can lead to future referrals.
Hospices can stand some education of their own. Nursing home staff are often frustrated by hospice’s staff seemingly cavalier attitude toward nursing home policies. For instance, hospices sometimes do not appreciate the strict schedule of patient assessments required by Medicare. The Minimum Data Set (MDS), a lengthy patient assessment form, must be completed every 30 days for the first 90 days of care and every 60 days after that. Even though the hospice has clinical management of the patient, the nursing home must still complete the MDS because the patient is still a resident of the nursing home. Because hospice is providing a significant portion of the care, their input and assistance is needed to complete the assessment.
Beware these 10 areas of conflict
Christine Johnson, RN, MS, executive director of The Inn at Barton Creek, an assisted living facility in Bountiful, UT, identifies 10 areas in which nursing homes and hospices can become entangled in conflicting policies and regulations. They include:
1. Coordination of billing. The two organizations need to work out who is going to bill for which services. This includes understanding the responsibilities of clinical management of the patient and distinguishing routine care provided by nursing home staff.
2. Patient self-determination and advance directives. Both organizations are responsible for ensuring the patient’s rights to informed consent are being respected. To ensure the patient’s wishes are being carried out, nursing homes are required to inform patients of their right to formulate an advance directive that establishes special power of attorney, a living will, and a medical treatment plan. For the hospice’s part, it should ensure that an informed consent form specifying the type of services that could be provided by the hospice is obtained for each patient.
3. Resident assessment. As mentioned earlier, hospices must cooperate with nursing home staff to ensure timely completion of the MDS, either by agreeing to complete the form based on their working knowledge of the patient or providing the needed information to nursing home staff responsible for completing the MDS.
4. Comprehensive care plans. While both hospices and nursing homes have care plans, they come with different requirements. For example, nursing homes are required to review and update their care plans every 30 days for skilled nursing patients and quarterly for long-term care patients. Hospices do not have the same requirement. The result can be two care plans for one patient evolving in two very different ways. Both organizations must strive to coordinate their care plans so they account for each other’s goals and are updated at the same time. "Work toward mutual support and understanding," Johnson says.
5. Professional communication. To facilitate the coordination of care plans, there should be standard mechanisms in place to notify each provider of changes in the care plan or changes in the patient’s condition. Johnson suggests each organization designate a staff member as the person to call when changes are made and who will coordinate how changes will be handled. For example, a hospice might designate the on-call nurse as the liaison so the nursing home is assured of reaching a nurse who is able to make sure changes are noted and care is provided in a timely manner.
6. Interdisciplinary team. Both nursing homes and hospices use a variety of disciplines to treat their patients. Each organization depends on the interaction of these disciplines to help determine the best course of care. When a hospice comes into a nursing home, the need to recount observations and communicate changes in care does not diminish. There is a need for both interdisciplinary teams to work together. Johnson suggests that each organization include a representative from the other’s team to act as a liaison between the two groups.
7. Physician services and visits. Hospices need to teach nursing homes that an essential component of hospice is physician-directed interdisciplinary care. The nursing home physician must clarify his or her role with hospice, including whether the physician or the hospice medical director will certify the care plan and services to be given.
8. Medications. This area has the greatest potential for conflict. Nursing homes must follow specific regulations for certain drugs, such as psychotropic and antipsychotic drugs. Before nursing homes can use them, there must be a specific diagnosis, such as depression or mental illness. Hospices, on the other hand, use some of these drugs routinely as part of their pain management arsenals. A conflict can arise when a hospice has placed a resident on one of these drugs to manage pain, but a nursing home nurse refuses to administer the drug because the patient doesn’t have the required diagnosis. If the nursing home nurse would have been properly educated about the hospice’s pain management plan and told why the drug in question was being used, the patient would not have been forced to suffer needlessly while the two sides straightened out their differences.
9. Clinical records. When a hospice comes in to treat a nursing home resident, it must establish a patient record. But that record also represents care delivered while the patient is a resident of the nursing home. Nursing homes and hospices must agree on how they will share their records, including which organization keeps the original copy.
10. Nursing home staff training. Hospices need to establish a collaborative training program with their nursing home partners. Hospices often treat facility staff training as a work in progress, says Johnson. In order for training to take root, hospices must make sure nursing home administration is taking part. With high-level management participation, it is more likely that the concepts taught will remain with the organization despite the high turnover rate of nurses and aides.
Perhaps the most significant conflict between nursing homes and hospices that prevents better end-of-life care in nursing homes is the interpersonal conflicts that may arise as a result of the differences in the two disciplines.
Hospice workers who value the input of family caregivers must realize that nursing home staff are the closest thing to family that many of their elderly residents have. Nursing home staff should be afforded the same respect as family, Pantel says.
References
1. Cleeland CS. JAMA 1998; 279:1914.
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