Pain Management in End-of-Life Care: Are We Meeting Our Dying Patients' Needs?

by Jacqueline Vance, RNC, with George E. Thompson, Sr, PA

The way pain is managed in the elderly dying patient has become a dominant issue in long-term care. Studies have shown that pain control is inadequate in many LTC facilities.^1-3

Recently, there has been an increased emphasis on hospice utilization and palliative care in LTC, especially with the passage of pain and end-of-life (EOL) care acts on the state level--e.g., hospice accessibility for LTC patients in Maine; mandatory education requirements in pain management and EOL care in California, West Virginia, and Oregon; the Michigan EOL care legislative package, which includes 15 separate bills relating to pain and EOL care; and the Maryland Pain Initiative, which is assessing pain treatment in LTC facilities.

A dilemma faced by many physicians in LTC is when to switch the treatment emphasis from life-prolonging interventions to comfort care. When the decision is made to begin palliative care, a hospice program may be contacted.⁴ The evidence suggests that hospice care improves pain management and satisfaction in nursing facilities.⁵ However, many facilities are not taking advantage of this option.

To provide insights into the issues surrounding pain relief, hospice, and palliative care in LTC, we interviewed two experts in this area: Timothy Keay, MD, CMD, Medical Director of Riverview Care Center in Essex, MD, and Adjunct Associate Professor in the Department of Family Medicine at the University of Maryland School of Medicine; and Larry Lawhorne, MD, Chair of the American Medical Directors Association's Clinical Practice Guideline Project and Associate Professor in the Department of Family Medicine at Michigan State University's College of Human Medicine in East Lansing. Dr. Lawhorne is also a member of Caring's Editorial Board.

Is pain at the end of life being managed effectively in LTC?

Dr. Keay In Maryland, I don't feel pain is being managed effectively outside of hospice. This is a huge issue in LTC facilities and one that CMS needs to take up. The National Hospice and Palliative Care Organization has taken the stance that whether hospice is involved or not, LTC patients should have a safe and comfortable dying experience. LTC facilities do a lot of EOL care without hospice, but to date, all the data that I have seen indicate that overall, comfort is improved when hospice is involved. LTC facilities can provide good pain control without hospice, but CMS should [get involved in this area], as they do for hospice.

In addition, simply classifying persons as "dying" or "not dying" does not help to ensure that pain will be well managed. Quality-improvement strategies are needed.

Dr. Lawhorne I agree that quality-improvement strategies are needed to improve the management of pain in EOL situations. I do believe pain is being managed effectively in the facilities that are applying a systematic approach to pain management, such as the implementation of a clinical practice guideline (CPG).

Do you use pain-management guidelines in your facilities?

Dr. Keay Yes. They are a part of the overall management plan in dealing with pain. They are an especially useful tool for teaching nurses and aides what we are looking for [with respect to pain symptoms] and why we are intervening in particular ways.

Dr. Lawhorne I use the AMDA Pain Management Clinical Practice Guideline (CPG) in the facilities for which I provide medical direction, and for the facilities in which the Geriatric Education Center of Michigan conducts training sessions. We encourage all facilities to incorporate the CPG into their Continuous Quality Improvement process on pain management.

Do you have some practical advice for improving EOL pain management in LTC facilities?

Dr. Keay I would suggest holding regular inservices on pain recognition, documentation, and management. If you have a hospice provider, I recommend using them for this service since they have the expertise, and your facility staff can benefit from an interactive relationship with your hospice program.

I would also suggest the quality-assurance approach. Someone should be auditing the charts of the last 10 to 20 deaths in your facility, paying attention to notations of pain. How was the pain handled? Who recognized the patient's pain? How was the pain documented? Can you tell that the pain was controlled? The audit should give you some clues as to how you might improve pain management at your facility.

I also recommend auditing the use of narcotics in your facility. Was a pain flow sheet used in each case? How was pain assessed and recorded, and by whom? Is it clear that the resident's pain was controlled? Were other modalities for relief of pain tried (and documented as tried)?

Finally, I would suggest that the medical director obtain the AMDA White Paper on Hospice in Long-Term Care and use it in conjunction with the AMDA CPG on chronic pain management (follow this link for more information).

Dr. Lawhorne One big problem is identifying the presence of pain based on nonspecific symptoms, such as grimacing and restlessness, in an individual who cannot give a history (see box at right). When symptoms that may reflect pain are identified, a nurse should assess the individual for pain by, for example, observing the individual's reaction to moving, or palpating or treating various body areas.

At some point, a physician should document--or a nurse should document, based on a discussion with the physician--whether the individual might be experiencing pain.

If the nursing staff cannot readily identify a source of pain, the attending physician should determine whether a more thorough workup might have an impact on the patient's outcome or if the pain should be addressed and treated empirically. In EOL situations. if the exact cause cannot be established, or knowing the cause would not significantly alter the treatment, this should be documented and the pain should be treated symptomatically.

Chronic pain warrants the same ongoing vigilance as does any other chronic illness, such as diabetes or hypertension. Every facility should have a plan in place to try to identify and manage pain on an ongoing basis. As discussed above, documentation should reflect that ongoing effort. At the least, it is inappropriate to "stop trying" if symptoms persist that might reflect pain, especially in individuals who are likely to have chronic pain, such as dying patients.

Dr. Lawhorne, would you provide some details on the Michigan project on improving pain control in the elderly?

Dr. Lawhorne The Michigan program aims to prepare facilities for CPG implementation. Each facility evaluates its assessment skills, communication, problem solving, and ability to take actions. Then we do an inservice on the CPG, and after that, we start mentoring the staff on implementation. The Michigan Department of Consumer and Industry Services--the department that certifies and licenses nursing facilities--has developed a checklist of [steps and strategies] for the provision of pain control and EOL care. The tacit understanding is that if a facility incorporates the items on the checklist, it is providing acceptable care.

Dr. Keay, you are co-author of several articles on hospice and palliative care education in medical school. How important is this type of education for ensuring adequate pain control for the dying patient?

Dr. Keay We've identified education in hospice and palliative medicine as a major gap in the medical school curriculum. In response, we developed and now have in place a required curriculum in hospice and palliative care at the University of Maryland School of Medicine. We are also beginning to put into place a curriculum on EOL care for residents in internal medicine. Elsewhere, I've advocated teaching EOL care in the LTC setting.⁶ A primary emphasis in all this teaching is how to handle chronic pain. It's not possible to do good EOL care without assuring that pain is addressed.

Are hospice and palliative care being used effectively in the your facilities or facilities you are familiar with?

Dr. Keay The data clearly indicate that hospice services are widely underutilized in most nursing homes.⁷ The reasons are many, and include financial, cultural, and regulatory issues. Health care providers working in LTC facilities should be held accountable for high-quality care for dying residents. Once they are held accountable and have to try to do it on their own, the benefits of hospice or hospice-like services may become more obvious. Hospice care could be used more frequently to provide skills and services that are not otherwise available in nursing homes. For eligible terminally ill patients, the Medicare Hospice Benefit supplies an interdisciplinary team with skills in pain management, symptom control and bereavement assistance.

Dr. Lawhorne Some nursing facilities do a very good job of EOL care without formal hospice. Some do a very poor job with or without hospice. By the same token, I have seen disappointingly poor EOL care and pain management provided by some hospices. The bottom line is that we have to somehow get away from the silo mentality that only certain components of the continuum can or should provide EOL care.

How could new legislation or regulations on hospice and palliative care affect your practice, your patients, and your facilities?

Dr. Keay The actual impact is not yet clear for most of the legislation that has recently been passed. I believe the issue with LTC facilities is more systematic. They are charged with maintaining or improving function, which logically is not the same as palliation. Specific amendments are needed for the dying patient.

Secondly, we should pay continued attention to changes in the Medicare hospice benefits to improve patient access to hospice services. I think we've all had the experience in LTC facilities of a resident admitted for rehabilitation even though they have a very limited life expectancy. There currently is no incentive to admit these patients to the nursing home directly under hospice benefits.

Finally, although there is some legislative activity on changing the Patient's Bill of Rights to insist on good pain control, this does not get to the fundamental issues that need to be addressed with these patients. What these patients need is attention to life review, anticipatory grief, and palliative measures.⁸ This is where legislation and regulation may be most effective.

Dr. Lawhorne In October 2002, 10 quality indicators, including pain management, will be reported for all Medicare-certified US nursing homes as part of CMS' national quality improvement project. This may increase the awareness of the need to enhance pain control programs in EOL care patients.

Where do you see EOL care going, and what direction would you like to see it take?

Dr. Keay There may be an opportunity for change in statutes and legislation pertaining to LTC facilities. For all practical purposes, the current Medicare nursing home skilled benefit excludes concurrent use of hospice. Therefore, monetary considerations usually dictate a futile attempt at rehabilitation or "gaming" the system. This should be addressed. Secondly, I'd like to see changes to the Minimum Data Set to improve EOL care in LTC facilities to at least meet hospice standards, with or without the use of hospice.

Dr. Lawhorne In general, I agree with Dr. Keay. However, I would emphasize that there are at least four stakeholders that need to be involved with the direction that EOL care takes, each of whom have fundamental effects on EOL care in LTC facilities. These are: (1) government, by virtue of protecting the most vulnerable and paying the bill; (2) resident, family, and friends whose values and expectations must be taken into account; (3) the formal advocacy system providing ombudsman activity; and (4) the providers themselves with their own mission and vision about what the NF's place is or should be in the continuum of care and in EOL care.

Conclusion

Providing comfort and pain relief for terminally ill patients should be a primary focus for physicians, nurses, and caregivers. An integration of knowledge from the fields of geriatrics, pain management, and palliative care is required to ensure that effective pain control is provided.⁹ At the same time, there needs to be uniformity and consistency of care of the dying patient throughout the long-term care continuum.

Effective communication among care providers is essential for the prompt recognition of pain and the timely delivery of pain relief. Wherever possible, the principles of palliative care should be integrated into the fabric of the nursing home. Education in this area should be ongoing. It is something that everyone involved in long-term care must learn to do well.

Caring Contributing Writer Jacqueline Vance, RNC, is AMDA's Director of Clinical Affairs. George E. Thompson, Sr, PA, is a Consultant to AMDA.

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