Delivering comfort and dignity: the role of hospice in pain management.
The management of pain, both physical and emotional, is the centerpiece of hospice services. "The role of hospice in pain management is to make sure every patient is comfortable and can live the last days of life fully, with dignity and comfort," says Andrea McVeigh, executive director of Omaha AseraCare. "We have more than 20 years' experience in developing specific pain management for complicated end-of-life care."
Hospice's expertise is important for both the nursing home staff and the family because when a patient is admitted to hospice, the focus of pain management shifts from a curative approach to a palliative approach. That may be out of the comfort zone for caregivers, whether at home or in the facility. "Sometimes long-term care professionals have a hard time making the transition from maintenance therapy for a patient who is not dying to treatment for someone who has a limited time to live," says Phyllis Grauer, RPh, PharmD, president of Palliative Care Consulting Group in Dublin, Ohio. "The concerns that are appropriate for patients who are custodial are not there for end-of-life patients."
For example, hospice may recommend a completely different drug regimen from those long-term caregivers might be accustomed to. Grauer cites the use of the drug Neurontin (gabapentin), approved for treatment of seizures. "In hospice, we predominantly use it for neuropathic pain," she says. "Someone without hospice training would not understand its use in this way and might try to get the medication discontinued."
Similarly, the family may be uncomfortable with the use of certain narcotic medications. Hospice coordinates the drug regimen with both the patient's family physician and the hospice medical director and works with the family to understand the choices that are being made.
Often, though, the goal of pain treatment in hospice is misunderstood. "Our society has grown to depend upon drug therapy as a coping mechanism," says Grauer. "Sometimes we numb ourselves with medication rather than dealing with our emotional, spiritual, and psychological issues. In hospice, we try not to let this happen; we want to make the patient comfortable enough so that she can work through whatever she needs to deal with, supported by the hospice team."
A Holistic Approach to Pain
Beyond the physical, good pain management also means alleviating the stress of the patient's emotional issues, such as troubled relationships and the myriad fears involved in facing mortality. "Hospice pain management is a coordinated effort, including emotional, mental, spiritual, and physical pain," says James Alan Avery, MD, national medical adviser of AseraCare. "Those are all components of pain. Sometimes we find that addressing the psychological needs of a patient goes a long way in managing the physical pain. That is why we look at depression, anxiety, and unresolved family issues in addition to the patient's disease process."
Lab tests and invasive procedures are usually not appropriate for a patient with a short period of time left to live. Therefore, working with the patient, the family, and the caregivers, hospice approaches pain from a variety of angles:
* Physical pain assessment. Not all pain medications address the same type of pain, so a specific physical assessment is important. Grauer cites the case of a patient who was taking three prescribed narcotic analgesics at the time he entered hospice care. "In trying to treat the pain, his physician had been adding different drug therapies," she notes. "The patient was drowsy and not in good pain control." After determining his pain was neuropathic, hospice switched the medicine to methadone, which is more effective for nerve pain and causes very little drowsiness. "We were able to give him a lot more energy," says Grauer. "He only had about four weeks of life remaining, but in that time, the quality of his life improved: He was alert and able to deal with the ending of his life."
* Interpretation of nonverbal cues. Patients are not always able to verbalize their pain, especially patients with dementia. "Our staff has additional training in assessing the signs of pain that are sometimes very subtle in nature, such as acting-out behaviors, facial grimaces, moaning, or skeletal muscle changes," says Jeanette Dove, professional services regional manager for AseraCare. "Depression, anxiety, and irritability are nonverbal cues that point to underlying pain or discomfort." Often the hospice team consults with the family or caregivers to understand how a patient has historically reacted to pain.
* Nonpharmacological interventions. The application of heat and cold, massage, physical therapy--these are some of the alternatives to drug therapy used by hospice. Even providing distraction can be effective in managing pain. "We frequently see that pain is magnified when someone is left alone with no distraction," says Grauer. "So we might recommend having a volunteer spend time with the person, or take him to an activity, or turn on the television--something to take his mind off the pain."
* Treatment of nonphysical symptoms. Not all pain at the end of life is generated by disease. "A patient might have anxiety at the terminal stage of life, and that's a spiritual issue," says Dove. "The spiritual coordinator can address those issues. Talking with the family might help us discover some clues. For example, when the chaplain visits, the patient may become calmer. The hospice team is attuned to that and can make arrangements and work with the facility staff to understand and recognize those needs."
Coordinating Delivery of Medication
Hospice also provides an additional level of care to ensure that patients receive their medications, particularly when prescribed "as needed." In the long-term care facility, caregivers often are not trained to assess a patient's need for medication, and staff workload may make it impossible to keep track of the patient's pain level in a timely manner. "You'd be surprised how many times a dose that is prescribed 'as needed' may not be administered timely," says Doug Weschules, director of clinical programs at Hospice Pharmacia. "Hospice can more closely monitor the situation. It could be as simple as switching the prescription from 'as needed' to a scheduled regimen."
Good collaboration between hospice and the nursing home is a major factor in improving pain management. The Promising Practices memo from the Centers for Medicare & Medicaid Services (CMS) directs the interaction of hospice and the nursing home, stressing hospice's role in educating the nursing home staff on pain management and monitoring medication delivery. Nursing homes participating in the two-year Corporate Nursing Home Improvement Collaborative project, sponsored by CMS, have significantly improved pain management.
With the help of hospice expertise, the long-term care facility can learn not only how better to care for a hospice patient, but provide better care for most of its long-term patients. "We may find that in years to come, with the increasing geriatric population, many long-term care patients are going to be palliative patients," says Grauer. "If the staff can get a feel for what good comfort care is, they can provide their nonhospice patients with good symptom management."
Ultimately, knowledge is power. Hospice can give patients, their families, and nursing home staff the knowledge of what to expect, what medications are appropriate, and what forms of support are needed. The result is a patient who is better cared for and who has better pain control.
RELATED ARTICLE: Measuring Hospice Quality
The Family Evaluation Survey of Hospice Care
Quality is at the core of the delivery of healthcare services, and hospice is no exception. In 2003, the Family Evaluation of Hospice Care was introduced, developed by Professor Joan Teno and researchers at Brown University in conjunction with Stephen R. Connor, PhD, vice-president of research and development at the National Hospice and Palliative Care Organization (NHPCO). It is a patient-centered, family-focused approach to evaluation, with national benchmarking capability. Families are asked specific questions about the care they and the patient received, with a particular focus on care and pain management, how hospice met the needs of the patient, and how the family was supported.
"Data are collected from hospices around the country on a quarterly basis," says Connor. "At the end of each quarter, each hospice receives a report that shows its results and compares them with other hospices in the state and on a national basis."
Approximately 500 hospice companies currently use the evaluation tool. It is being considered for endorsement by the National Quality Forum and, in that event, Connor predicts the number of hospices using it will grow dramatically.
AseraCare has been a leader in using the Family Evaluation of Hospice Care quality measure. "We're building our entire structure around the response of the family," says Christie Franklin, vice-president of professional services, acquisitions, and start-ups for AseraCare. In the future, the NHCPO will be working with AseraCare to develop a similar tool to measure patient satisfaction, which would be administered shortly after the patient is admitted to hospice. "That's the piece that has been missing," says Franklin. "The patient will then have a voice in how hospice care is delivered."