Toward a Good Death in the Nursing Home: Pain Management & Hospice are Key

by Laurie Lewis

There is no question that "provision of optimum end-of-life care needs to be a focus of nursing homes," said Timothy J. Keay, MD, CMD, Medical Director of Garden View Healthcare Center in Baltimore, MD. Why? About 20% of all deaths in the United States occur in nursing homes, and one of every three people admitted to a nursing home will die within the year.

Dr. Keay and the other medical directors interviewed for this Special Report observed that some long-term care facilities handle care for dying patients better than others, noting that one reason for suboptimal end-of-life care lies in OBRA '87 regulations, which mandate that nursing homes improve or maintain a patient's function. But when a patient is dying, experts agree that the emphasis needs to shift from improvement to palliation.

At the end of life, palliation takes many forms. In the physical realm, palliation involves management of pain and other conditions common at the end of life, including the general shut-down in the body's functions that may lead to diminished appetite and increased somnolence.

Palliative care also addresses nonphysical issues such as loneliness and concern about separation (both immediate and after death), and reaches into the spiritual realm, as well. The family--both people related by blood and marriage and the surrogate family of nursing home staff who have been caring for the patient--also have needs that should be addressed if the death is to be a "good" one.

Dying in US Nursing Homes

Americans in general do not handle death well. "In the Orient, dying is a requirement. In Europe, dying is inevitable. In America, dying appears to be an option," said Kerry Cranmer, MD, CMD, Medical Director and Chief Executive Officer of Cranmer Medical Services in Oklahoma City, OK.

Despite advance directives to the contrary, a dying patient may be transferred to a hospital for intensive medical treatment. Artificial nutrition, hydration, and antibiotics may be ordered to forestall death. Across the medical system, caregivers avoid open, honest, and timely discussions about death. "We use too much technology for too long, and we don't have necessary conversations with the patient and family," said David Weissman, MD, FACP, Director of the Palliative Care Program at the Medical College of Wisconsin in Milwaukee.

Even when such conversations have occurred, dying in a nursing home is quite different from dying in a hospital or at home. "People dying in the hospital often have a critical illness, and care focuses on attempting to find a cure. People dying at home often have a clear understanding of their disease and have chosen to die there. People dying in a nursing home may not be ready to acknowledge that they are dying. They tend to require a lot of care, such as assistance with activities of daily living, rather than a lot of medical care," said Dr. Keay.

Howard Tuch, MD, CMD, Director of Palliative Care Services for Genesis ElderCare in Tampa, FL, noted that "dying in a nursing home is less technologically oriented than dying in a hospital. But that by itself does not make it better. The patient is still likely to be isolated from family. She may be dying in the presence of a roommate she does not know very well. The institution does not necessarily address the spiritual needs of the dying patient and does not allow for rituals surrounding death."

Death in US nursing homes could be improved, the experts stressed. Acknowledging the institution's shortcomings is an important first step. Adequately addressing pain, which many people fear more than death itself, highlights the fact that palliation is at the core of end-of-life care. Bringing in outside resources in the form of hospice can help a facility to address all dimensions of care for the dying. Ultimately, a better way to die in the nursing home requires education of the staff as well as recognition of their need to grieve when a resident dies.

Managing Pain at the End of Life

Pain management is the "most studied" area of end-of-life care, observed Terry Hill, MD, Medical Director of Laguna Honda Hospital in San Francisco. "Unfortunately, however, studies show that pain management has not improved much in recent decades."

Myths and misconceptions, not lack of effective medication, create barriers to optimal pain management at the end of life, the experts said. A major barrier is fear that the patient will become addicted to pain medication. In reality, dependency has not been demonstrated in elderly patients taking opioids for pain management. Even if a patient did become dependent on drugs, does it matter when life expectancy is measured in weeks, rather than years?

Another concern is that elderly patients do not tolerate pain medication well. That, too, is a myth. With careful dose titration, pain relief can be achieved without causing respiratory depression and other serious adverse events. The most common adverse event associated with morphine use is constipation, and that can be easily handled by giving the patient stool softeners.

Some physicians fear that they will face regulatory or legal retribution if they treat patients with large doses of pain medication. Yet no physician's license has ever been revoked for appropriate use of pain medication.

Another misconception is that cognitively impaired people may be able to tolerate pain well. And even if they are in pain, the myth goes, they cannot communicate their discomfort. On the contrary, cognitively impaired patients can indicate their degree of pain using visual analog devices showing facial expressions or numerical or linear scales. Nonverbal cues such as grimacing and guarded movements also may indicate pain.

Nursing staff, especially the nursing assistants who provide most of the bedside care in the nursing home, must be able to read these nonverbal cues. They need to know how to assess pain and communicate the findings to the prescribing physician. "If we can't assess pain, we can't treat it," said Dr. Tuch.

Facilities trying to improve their approach to pain management tend to recognize that better assessment of pain is the first step, according to Dr. Weissman, who has conducted training programs on pain management for long-term care facilities in his home state, Wisconsin. "We provide the guidance, but each participating facility develops its own program, to reflect its own culture," he said.

Dr. Weissman observed that most facilities begin by developing pain assessment forms. Then they focus on staff education, and later they develop standards for pain medication.

General principles for use of pain medication in the nursing home are incorporated into the American Medical Directors Association's clinical practice guidelines (see box, right). Once appropriate assessments are done, medications are given on a schedule, not on an as-needed basis. "The goal is to stay above the pain. We do not want to be treating from one pain crisis to the next," said Dr. Cranmer.

Another principle of pain management in the nursing home is frequent reassessment and adjustment of the dosage. "Pain at the end of life can change quickly," Dr. Keay observed.

The recommended regimen for pain medication follows a stepped approach. Initial treatment is with nonopioid analgesics such as aspirin, acetaminophen, and nonsteroidal anti-inflammatory drugs (NSAIDs). "These medications can be very effective, especially if they are matched with the disease," said Dr. Keay. He noted, for example, that NSAIDs work well for metastatic bone pain because of the inflammation surrounding the bone.

If nonopioid analgesics do not provide adequate pain control, a drug such as acetaminophen may be combined with a short-acting opioid such as codeine, oxycodone, or hydrocodone. The final step is a long-acting opioid such as morphine or fentanyl. Oral medications and skin patches are preferable to invasive dosing methods involving needles, including patient-controlled analgesia.

Besides opioid and nonopioid analgesics, other medications can be used adjunctively to help control pain. Antidepressants such as amitriptyline, imipramine, and nortriptyline are particularly helpful for neuropathic pain. Anticonvulsants and anxiolytic drugs also may have analgesics effects if they are matched to the source of the pain.

"With all the types of pain medications available, we should be able to control pain in every patient," said Dr. Cranmer.

Nonpharmacologic methods of pain management also may play a role in end-of-life care. Acupuncture and biofeedback may be helpful in some patients. Massage, in addition to having a soothing effect, brings person-to-person contact that helps ease the isolation of the dying patient.

Hospice, Nursing Home Partnerships

Pain management is one service in which hospice excels, said Richard Stefanacci, DO, CMD, Medical Director of Elder Health in Baltimore, MD, and a member of Caring's Editorial Board. "Hospice personnel spend more time at the bedside. They are trained to identify pain even in patients who cannot communicate, and are experts at selecting the right type of medication and the right dose."

In addition to pain management, hospice offers many other services important to end-of-life care. A multidisciplinary team provides medical, nursing, social work, and counseling services. The team also addresses the spiritual dimensions of dying. Dr. Keay noted, "Hospice is the only way to get reimbursed for spiritual assessment."

If a patient is dying without family nearby, hospice workers can stay by the bedside so that the patient does not die alone. Hospice workers provide care such as hand feeding for a patient who has little appetite. Because hospice considers the family the unit of care, it offers grief counseling to the survivors for up to a year after the patient dies. Similar services aimed at understanding the needs of the dying patient and coping with death can be extended to the surrogate family--that is, the nursing home staff.

With such an array of valuable services, it may be surprising that nationwide fewer than 15% of nursing home residents use hospice services. There are several explanations, our experts noted.

The biggest barrier to hospice use has been the difficulty in determining when the patient is at the end of life. Since hospice is considered a six-month entitlement, to qualify for hospice care--and Medicare reimbursement--a patient should have less than six months to live. The difficulty lies in predicting the time of death. Although life expectancy can be projected with some accuracy for cancer, the trajectory is less certain for many of the chronic, slowly progressing conditions that afflict most nursing home residents.

In recognition of the inexactness of prognostication, the Benefits Improvement and Protection Act (BIPA) passed last December liberalized the six-month criteria. Under BIPA, according to Dr. Cranmer, certification for hospice is based on the physician's clinical judgment and the normal course of illness. The physician will not be held responsible if the patient outlives the expected six months.

Of course, some families are loathe to accept the likelihood that the patient has less than six months to live. "Hospice has a palliative, not a curative, focus. The family has to accept that palliation is the best that the medical system can offer," said Dr. Keay.

Concern about finances and false accusations of kickback schemes or double-dipping into the Medicare system have kept some nursing homes and hospices from signing contracts with each other, according to Drs. Cranmer and Tuch. But such concerns are more a matter of perception than reality, they said. Reimbursement guidelines are clear (see box, below). The nursing home bills all care that is not related to the terminal illness to Medicare, and the hospice assumes responsibility for obtaining reimbursement for care it provides for the terminal disease.

In some cases, monetary issues may serve as a smokescreen to cover up a more genuine barrier: the cultural clash between the two institutions. Despite their emphasis on recovery and maintenance, staff and administrators at long-term care facilities recognize palliation as a major aspect of their work. Some may be reluctant to bring in outsiders to perform services that they could provide themselves.

Responding to this argument, Dr. Cranmer said, "Hospice is not a duplication of services, but a value-added resource."

Dr. Keay elaborated, "Nursing homes are not trained or paid or staffed to take care of people at the end of life. Hospices are." He continued with an analogy of division of responsibility between nurses and physical therapists. "A nurse could do physical therapy if she were trained to do it, paid to do it, and had time to do it. But why have a nurse do it when you have access to a trained physical therapist?"

Just as the nurse's and physical therapist's roles are complementary, so too are the nursing home's and hospice's, Dr. Keay continued. At the beginning of a relationship, the two organizations sign a contract that clearly delineates each group's responsibilities.

When the nursing home requests hospice services for a particular patient, the hospice nurse assesses the patient and creates a care plan. The care plan is only a recommendation; it does not usurp the role of the patient's physician or nursing home. The patient remains a patient of the nursing home, which is ultimately responsible for the quality of care received.

"Not everyone needs hospice care," said Dr. Cranmer. "But for a patient who needs psychosocial or spiritual support, hospice will improve the quality of the end of life."

Education & Training

To assist staff and administrators in taking an appropriate approach to the dying resident--stressing palliation as the primary goal, assessing and managing pain, addressing the person's physical, psychosocial, and spiritual needs--the nursing facility can contract with the hospice to provide education. Inservice training can be offered not only for nursing staff, but for everyone who comes into contact with patients at the end of life, including the dietary and maintenance staff. Hospice counselors can provide grief counseling and help staff incorporate rituals surrounding death into activities at the facility.

Dr. Tuch highlighted the importance of such rituals as saying goodbye at the bedside of the dying patient and holding a memorial service for staff and residents. "Such rituals help the staff recognize the value of the individual patient, as well as the value of what the facility does for all its residents," he said.

"Bringing in hospice to help staff deal with end-of-life issues can add to the quality of care. But training and processes of care need to be integrated into the nursing home itself," Dr. Tuch noted.

Drs. Hill and Weissman agree. Both have been actively involved in training programs for staff of long-term care facilities in their respective states. In both cases, each institution participating in the training program develops its own protocols, policies, and action plans to reflect the concerns of the particular nursing home.

Dr. Hill's program involved a two-day training session for 48 facilities in California, run under the auspices of the California Coalition for Compassionate Care with funding from the Robert Wood Johnson Foundation. Leadership teams from each facility underwent training and received support from the coalition for six months. The teams developed action plans addressing pain and one other relevant area and, at the end of the six-month period, they came together again for a half-day training.

Dr. Weissman's educational initiative began as a pain-management program for about 100 LTC facilities in Wisconsin and is now expanding to other areas (also see Dr. Weissman's pain-management article in Innovations in End-of-Life Care at www2.edc.org/lastacts/archives/archivesJan01/featureinn.asp; free registration required). In addition, he recently started a similar training program on end-of-life care, which covers such topics as talking to patients about death, identifying the dying patient, and managing non-pain symptoms.

When asked about the success of these educational efforts, Dr. Hill and Dr. Weissman expressed common themes. Change does not happen overnight, they said, and commitment from the administration is absolutely essential.

"Our program officially lasts for one year, but two years is a more realistic period to achieve significant change," said Dr. Weissman. "Small changes, though, should be occurring all the time as the staff start to view end-of-life care from a new perspective." He added that the facilities participating in the training program that failed to make substantial progress were ones that experienced a change in a key leader, such as the director of nursing.

Dr. Hill has had a similar experience. "Education alone will not change practice. An organizational change model is needed, and the facility's leadership needs to be committed to the change," he said. "It could take several years to integrate change institutionally," he added.

The educational effort has ramifications beyond care of the dying. As Dr. Hill noted, "When staff learn to address matters such as pain management and spiritual issues as they care for dying patients, they start to apply the same principles to care for all patients. As a result, quality of care improves in the facility as a whole."

Medical journalist Laurie Lewis is a Contributing Writer to Caring.

back to top