Advance directives needed in nursing homes
Patient preferences vary by region
Nursing homes can help patients decide and document how they wish to be cared for in the event of a serious illness, according to a recent study. With that finding in mind, the relationships hospices have with nursing homes may very well dictate whether nursing home patients receive complete advance directive guidance that includes care wishes for both chronic and terminal stages.
Expressing preferences for end-of-life care in advance directives can help patients and their families deal with questions that may arise when an elderly person becomes seriously ill, such as whether or not to resuscitate, and the kind of care the patient wishes to receive following a terminal diagnosis. Nursing home residents also must decide on palliative care options available to them before their illness turns into a terminal condition.
Today, about 1.5 million people reside in nursing homes in the United States, and many have chronic disorders, researchers report in the May issue of the Journal of the American Medical Directors Association. These chronic illnesses are often directly linked to their deaths, making it important to for those patients to document their care wishes in the event they cannot tell physicians and medical staff how they want their final weeks of care carried out.
"Addressing patient and family desires for treatment is important for maintaining the dignity and comfort of any patient," says Vincent W. DeLaGarza, MD, of Johns Hopkins University in Baltimore.
DeLaGarza and his colleagues reviewed medical charts of more than 4,000 nursing home residents in a managed Medicare program in six states. They found that in 1996, 73% of patients or their families had discussed their preferences for treatment in the event of a serious illness. The following year, the nursing homes participating in the study made efforts to increase the number of patients with advance directives. These initiatives included staff educational programs and letters to health care providers.
By 1997, 85% of more than 6,500 patients surveyed had advance directives. Patients’ preferences for their end-of-life care varied by geographic region. For example, 8% of patients in Minnesota said they would want CPR, compared with 29% of those in Georgia. Similarly, 87% of patients in Georgia said they wished to be hospitalized, compared with 57% of those in Minnesota. Overall, 62% of patients wished to be hospitalized.
The reasons for the geographic variation are not clear, but the researchers suggest they may reflect racial preferences, which have been documented in previous studies. Nonetheless, the variation in patient preferences and the fact that more than one-third of patients did not want to be hospitalized underscores the need for patients to state their wishes explicitly in letters or discussions with family members and health care providers, researchers concluded.
The need for advance directives in nursing homes is an opportunity local hospices must seize, according to Cherry Meier, RN, MSN, long-term care manager for the National Hospice and Palliative Care Organization in Alexandria, VA, and director of public affairs for Vitas in Austin, TX.
"The need for information about advance directives is one of the reasons why nursing homes invite hospices in," Meier says.
But nursing home-hospice relationships can be delicate, Meier warns. Not all nursing homes are receptive to hospice offers to share expertise. There is still a lack of understanding between nursing homes and hospices. And while nursing homes have a learning curve, so do hospices, says Christine Johnson, RN, MS, executive director of The Inn at Barton Creek, an assisted living facility in Bountiful, UT.
Johnson speaks not just as a nursing home administrator, but also as an expert in nursing home-hospice relationships. In 1997, after a number of nursing homes in Utah complained that there seemed to be an unusual push for hospice services in nursing homes, she co-wrote the Utah Health Care Association’s guidelines for delivering hospice care in a nursing facility.
While hospices have an expertise in educating patients and families on advance directives, the scope of their expertise may be limited to only end-of-life questions, rather than issues surrounding a chronic illness. Nursing homes, on the other hand, focus on treatment issues.
Nursing homes focus on treatment issues
Understanding nursing home concerns will give hospices a helpful perspective when they discuss advance directives with nursing home staff. This includes recognition that nursing homes are often concerned with intermediate conditions while hospices focus on terminal conditions. And the biggest of those terminal care issues is palliative care, which includes symptom management and emotional and spiritual care.
Both Meier and Johnson agree that hospices and nursing homes usually will not come together to promote advance directives outside of previously established cooperation. The value of hospice and nursing home cooperation in educating patients and their families about care options is that it ensures that their decisions are honored and promotes a seamless transition from nursing home care to hospice care when appropriate.
But to foster grater cooperation, hospices must address nursing home needs, not in one single area such as advance directives, but from a more global perspective.
Johnson identifies 10 areas in which nursing homes and hospices can become entangled in conflicting policies and regulations. They are as follows:
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 being able to distinguish 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. Hospices must cooperate with nursing home staff to ensure timely completion of the minimum data set, either by agreeing to complete the form based on a working knowledge of the patient or providing the needed information to nursing home staff responsible for completing the form.
Work toward mutual support’
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 that they account for each other’s goals and are updated at the same time. "Work toward mutual support and understanding," Johnson recommends.
5. Professional communication. To facilitate the coordination of care plans, standard mechanisms need to be in place to notify each provider of changes in the care plan or changes in the patient’s condition. Johnson suggests each organization designate one staff member as the person to call when changes are made and to coordinate how the changes will be handled. For example, a hospice might designate the on-call nurse as the liaison so that 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 the hospice, including whether that 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 arsenal. 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 is properly educated about the hospice’s pain management plan and why the drug in question is being used, the patient will not be forced to suffer needlessly while the two sides straighten 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. For training to take root, hospices must make sure nursing home administration is taking part. High-level management participation means there is a greater likelihood that the concepts taught will remain with the organization despite the high turnover rate of nurses and aides.
"Both sides must be open so that some degree of rapport is developed," says Johnson. "If you have common principles of practice and come to an agreement on how to perform these practices, then it all flows."
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