Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

In this issue, we feature the work of three different clinician-researchers, all based at the Geriatric Research and Education Clinical Center (GRECC) at the Edith Nourse Rogers Veterans Administration Hospital in Bedford, Massachusetts. This setting is the home of the Dementia Special Care Unit, a 100-bed inpatient unit, as well as an outpatient program, and an adult day care center for US veterans with dementia (the Veterans' Center). The Veterans Administration Health Care System, which is funded by the U.S. government and provides care for a large number of older patients, has taken advantage of the particular features of its centralized funding as well as its mandate to care for this aging population, to become a leader in dementia care. The first interview with Ladislav Volicer, MD, PhD, and Ann Hurley, RN, DNSc, describes their conceptually innovative research and its implications for practice. The second interview with Scott Trudeau, MA OTR/L outlines the sensory stimulation program he designed, entitled Bright Eyes.

Please click on the title to go the selected interview. Click on the names of the innovators to access their biosketches.

An interview with Ann Hurley RN, DNSc and Ladislav Volicer, MD, PhD

In this first interview, we hear from Ladislav Volicer, MD, PhD, and Ann Hurley RN, DNSc, clinician-researchers who have studied many specific elements of the care of patients with advanced dementia. This physician-nurse team has changed the way we think about dementia and how to provide quality palliative care for this group of patients, who have not been well served in this domain. Drs. Volicer and Hurley are leaders in this field and have conducted conceptually innovative research for more than ten years. While they are situated in a clinical setting themselves, wide dissemination and implementation of their findings into clinical practice has lagged; in this interview, Volicer and Hurley explore the barriers to adoption of the principles that have emerged from their research and clinical experience. In addition, they talk about their current work, including Dr. Volicer's new model for quality of life and Dr. Hurley's insights about the importance of understanding the patient's experience as an entry point to providing quality care. They review the interdisciplinary process of meeting with families to determine goals and levels of care for patients with advanced dementia, which they initiated at the Dementia Special Care Unit several years ago, and describe how the entire field of palliative care for dementia has evolved in recent years.[Citation: Hurley A, Volicer V. Caring for Patients with Advanced Dementia - Implications of Innovative Research for Practice: An interview with Ann Hurley and Ladislav Volicer, by AL Romer, Innovations in End-of-Life Care, 1999;1(4), www.edc.org/lastacts]

Ladislav Volicer: Well, you can see it almost as three phases. The trajectory of our work seems to follow our evolving understanding of what makes up quality of life for patients with moderate to severe dementia. If you look at the model of quality of life that Lisa Bloom-Charette and I describe in our new book you'll see that we define quality of life as made up of three main areas: medical symptoms, psychiatric symptoms, and the domain of meaningful activities.¹

New Definition of Quality of Life

Ladislav Volicer: Visually, we have a graphic with three intersecting circles, each representing one of these domains. The interfaces of each overlapping circle are also important. We define the interaction of medical symptoms and psychiatric symptoms as the domain of comfort; we define the interaction of psychiatric/ behavioral issues and meaningful activities as mood with the potential for depression; finally, our definition of the interaction of meaningful activities and medical symptoms involves the domain of mobility.

In our earliest research, we concentrated on medical concerns first. That early research investigated the treatment of infections, as well as eating difficulties and how to manage them, and we wrote a number of papers that made it clear that the most intrusive medical intervention might not always be appropriate in terms of patients' best interests and comfort.^2,3,4 Our second area of research focus has been psychiatric problems and understanding the behavior of patients with dementia. We are now pursuing this domain quite actively. The overlapping area of comfort has also been a major focus of ours from the beginning. Ann and other colleagues developed an objective scale for measuring discomfort in noncommunicative patients and evaluated it back in 1992.⁵ We are continuing to pursue medical issues, for example, nutritional issues - determining optimal weight in Alzheimer's patients. When these patients lose their ability to ambulate, they lose muscle, and so their ideal body weight tables do not apply. To keep patients at a weight recommended for otherwise healthy adults would mean replacing the muscle with the fat, which is not in the patient's best interest.

However, the emphasis of our work is shifting from the medical to psychiatric and behavioral problems, and from there to the issue of appropriate meaningful activities - which is where we are going, and where we are still trying to improve our practice here at the Dementia Special Care Unit.

Ann Hurley: What I'm working on right now is a good example of the shift that Ladi is referring to. Dr. Ellen Mahoney from Boston College and I are leading a team investigating "resistiveness" to care. I find the following analogy helpful: Pain management is to cancer as behavioral symptom management - i.e., managing some of the problematic behaviors - is to dementia. There are the various stages of dementia, and there are some behavioral problems that become intense during particular stages, but as the person gets more ill, he or she no longer has the physical capacity to mount some of those responses.

For instance, not being able to eat might happen at a very late stage, whereas some of the other "disruptive" problems might happen in the moderate stage of dementia. And one of the foci of the program here, in addition to providing palliative care, is providing good quality care that includes managing the patient's aversive symptoms - just as managing pain is very important to cancer patients.

Ann Hurley: One of the issues is that patients don't always understand what's happening to them. For instance, if I were to bathe a person who couldn't understand what I was doing, and I just brought him or her into a tub room that's cold and used a hydraulic lift to plunge that person into cold water, that would be a very frightening situation. If we just invade a person's territory, tear off his or her clothes, and march in with a wet face cloth, then the person will want to protect him or herself, and if I still persist, the person would want to ward me off and then might end up hitting me. One of the things you want to do is to avoid those situations you know are frightening. We have done several studies where we analyzed videotapes of these caregiving encounters. If you don't look at the whole scene on the videotape you might think some of those problematic behaviors come out of the blue, but there very often is a precipitant within the caregiving encounter.

So (1) we have developed a scale to measure resistance to care and, (2) we've looked at several interventions during bathing to decrease resistiveness to care. My agenda this summer is working with Ellen Mahoney, who's the project director for this grant, to complete the analyses.

Ann Hurley: Resistiveness has several components. It's got intensity, it's got frequency, it's got numbers of resistive behaviors, and let's say, collectively, these components add up to the severity of the resistiveness. If you can intervene with any of those - if you can decrease the number of resistive behaviors or how long they persist and how strong they are - then you can make a difference in terms of resistiveness. Our resistiveness-to-care scale is a 13-item form that gets rated in terms of presence, duration, and intensity during the rating period.⁶

Ladislav Volicer: I would like to add to that. The goal is really to try to prevent resistiveness. That's what the tapes are used for, to actually look at the antecedent model and antecedent signs, and to find out how we can prevent the escalation of uncooperative behavior into resistiveness.

Ann Hurley: One issue that many professionals find distressing is almost a "blame-the-victim phenomena." Many of the problematic behaviors that patients suffering from dementia engage in are distressing to staff. It's distressing when someone hits you, it's distressing to other patients when they hear someone hollering, and it's distressing to families and visitors, too. And so sometimes the incentive for addressing these problems is to decrease the burden on caregivers. My reaction is, "Let's step back! This person (the patient with dementia) must be suffering so much internally if that's the external symptomatology." So one of my major interests is to focus on the person and that person's internal experience. If a patient is acting in a way that's troublesome, get to the root of the problem.

Ann Hurley: No, it's not as widely practiced as it should be. A lot of the literature still points to distressing behaviors, disruptive behaviors, and obstreperous behaviors. Even the labeling of some of the instruments that are used to assess those behaviors have a blame-the-victim cast to them. For example, one tool has the acronym COBRA (the Caretaker Obstreperous Behavior Rating Assessment).⁷ The cobra is a snake. To label a tool for measuring behavior by the name of COBRA is distasteful to me.

Ladislav Volicer: This connects to Ann's approach to the issue of the resistiveness, and why Ann is so interested in trying to change the mindset of people who call Alzheimer patients "aggressive" or "assaultive." If you really look at it, they are not assaultive or aggressive when you leave them alone. They just get upset if somebody is touching them - somebody is trying to do something with them and they don't understand what's going on. It's distressing to patients. So it's not really that they are themselves assaultive or aggressive, it's really just because of the confusion. That's why we call it "resistiveness", and try to get away from this assaultive, aggressive, obstreperous behavior-type of terminology.

Ann Hurley: I'd like to get away from blaming the victim, to try to understand how painful, how uncomfortable, how distressing and disturbing someone must feel internally if they're acting that way. And Ladi elaborated on resistiveness to care, that we look at it within the behavioral model of ABC - Antecedent, Behavior, Consequences. Now when we are trying to understand resistive behavior, we look for the antecedents. For instance, when Ladi was doing a nursing home consultation, he was consulted about a patient who really acted out during bathing. Well, it turned out that the person had metastatic cancer with pathological bone fractures, for which she was not receiving proper analgesia!

Ann Hurley: There's another cluster of behaviors that draw less attention and are related to apathetic behavior - persons who are apathetic, withdraw into themselves, don't interact with the environment, and are not troublesome. These people don't get the attention that they need, which you can understand. If there are few staff and one patient is hollering and another is withdrawn, who's going to get the attention? Not the poor persons sitting all by themselves, doing nothing. It's up to us to be proactive, to provide meaningful activities and joy and pleasure for those persons that don't demand it of us.

Ladislav Volicer: There is certainly a shift away from providing aggressive interventions for Alzheimer's patients; for instance, the use of tube feeding for patients with advanced dementia has decreased very, very markedly in the past years. And it's also recognized that it's not always appropriate to transfer patients from nursing homes to an acute care setting for treatment of infection and so on. There are a lot of people who are trying to treat these infections in the nursing home to avoid the transfer.

Ladislav Volicer: The acute care setting is not very good for patients with dementia. The staff there don't know how to handle these patients. It's not a safe setting; they usually have to be restrained in bed because they would remove their IVs. They would wander around and might be unsafe in that environment, so it's a very distressing experience for them. Very often they develop pressure sores; they develop contractures; their nutritional status gets worse because, again, the acute-care staff doesn't know how to feed them and might not have time to feed them appropriately; and so on. So as much as that can be avoided, it's certainly in the best interest of the patient not to be moved. There is actually a study that indicates that acute survival is the same in hospital and nursing home, and long-term survival is actually better in patients who are treated in a nursing home than those who are transferred to a hospital.⁸

Ann Hurley: Beyond the potential iatrogenesis, is also the notion of the long-term care staff knowing the patient. They know patients' nuances, they know what they like, they know what they dislike, and sometimes they "know" the patients' immediate needs better than their loved ones do, which is very sad for the wives who see this phenomenon between a veteran and the staff. The staff spends more hours with the veteran than the spouse does, and some of the veterans respond better to the staff than they do to the spouse. Patients start to forget who they are and who their loved ones are. Yet these same patients become quasi-secure in this long-term care environment where they know the staff and the routines are familiar. To move a patient with dementia away from this familiar environment to someplace that's new is a problem.

Ann Hurley: One of the projects that we had done shortly after I came on board is looking at the role of the nurse in what we then called advance care planning, or advance proxy planning. These are discussions that go on in the absence of written advance-care planning documents, or if existing documents need more elaboration for patients with severe dementia who are near the end of their lives.

Tell us about that.

Ann Hurley: The team develops a plan and elicits preferences from the family about what the family wants to have done in terms of providing comfort care or palliative care, as the disease marches on and predictable complications occur. The family in concert with the caregiving team makes these decisions on behalf of the veteran. This project was one of the first efforts to bring hospice/ palliative care services to patients with advanced dementia.^9,10

The process of opening a discussion with family members about the treatment of disease symptoms in patients suffering from an advanced stage of dementia came out of our belief that we should be changing the paradigm of care at this point from high-tech to high-touch care.¹¹ Aggressive medical interventions at this stage may or may not extend a patient's life and often cause discomfort as well as increasing the likelihood of iatrogenic complications. Given our understanding of the clinical and ethical issues for these patients' care, we were striving to create a system that made patient comfort the highest priority and attended to patient and family values.

Within this model of care, five levels of care were developed. Level One involves patients receiving aggressive diagnostic work-ups, treatment of co-existing medical conditions, and transfer to acute care units if necessary. This level includes using CPR (cardio-pulmonary resuscitation) in the event of cardiac arrest and tube feeding if normal food intake is not possible. Each subsequent level involves implementing less aggressive/intrusive care. Patients in Level Two are assigned DNR status (a Do Not Resuscitate order), but otherwise receive the same care as Level One. Level Three involves DNR and no acute care unit transfer for medical management of intercurrent life threatening illness. Level Four involves all the previous restrictions, and no work-up or antibiotic treatment for life-threatening infections. Antipyretics and analgesics are used for patient comfort. These have been shown to be equally effective and less invasive for patients. Level Five includes supportive care as defined by the fourth level, but eliminates tube feeding by nasogastric tube or gastrostomy when normal food intake is not possible. Each level of care is not only defined by what medical interventions are not applied, but by intensive care nursing interventions that are applied. For example, nurses offer many comfort measures to manage fever symptoms for patients.

This process of negotiating care levels begins with the team of nurses who provide the care that the veteran receives 24 hours a day, seven days a week, getting together with the unit physician to come to consensus on what they would recommend as for the level of care to the family member at the family conference. The providers have all this knowledge, and we believe that it would be stressful and even irresponsible to say to the family member, "Here's a blank piece of paper, we're not going to give you our recommendations at all, this is what you can do." Instead, the nurses get together with the ward physician, talk about the status of the person, and come up with a recommendation they believe is in the patient's best interest. It's a recommendation for the family to consider, not necessarily accept.

The family conference is an essential part of this process. The family member(s), with the assistance of the physician, the nurse, the social worker, the chaplain, and whomever the family wants to bring, really grapples with the problems that are facing their loved one now. What does the immediate future look like? What decisions does the surrogate decision maker need to make in advance about the care that the veteran should receive?

When the program first began, there wasn't as much agreement between the nurse's recommendations and what the family ultimately decided as there is now. This is something that Ladi and I have talked about. My perspective is that the nurse cannot help but consider the patient in the whole-family context. Now Ladi will keep bringing the staff back to say, "What do you think is best for the veteran?" The team makes a recommendation in terms of the whole family, but the family member bears responsibility for making this decision, which can be very difficult to do.

Ann Hurley: In fact, we have observed that families sometimes believe that aggressive treatments have more power than they really do, i.e., a greater likelihood of "success" in overcoming the natural course of the disease than they really do. Ellen Robinson, RN, PhD, did her dissertation on the experience of the family member who makes an advance directive and advance care plan, and then actually lives through the implementation of that plan. Ellen interviewed some of the wives, and one of the stories she told me was particularly poignant, about a veteran's wife talking about DNR. This particular veteran did not need to be resuscitated because he didn't have an event where his heart stopped or his breathing stopped. But as she considered this decision in the abstract, she would say, "I put it on, and I took it off, and I put it on, then I took it off." This struggle to make what seemed to be a life and death decision was occurring in the absence of an understanding of the very low likelihood of CPR being effective in an unwitnessed arrest in a demented person who is severely enough demented to require long-term care. So she was agonizing about a theoretical possibility, i.e., the possibility of bringing him back to life, which really wasn't grounded in reality. That's what I mean when I say that people often invest choices regarding treatment with more power than studies of the consequences of those interventions show to be true.

One more thing I'd like to emphasize is that this is a process, and that some people worship at the shrine of the legally executed advance directive. And you've done that so you can wipe your hands and go away, and you don't have to bother to talk with the family again. But this is an ongoing process. Communication and trust-building are so important throughout.

Ladislav Volicer: We are finishing a study where we surveyed family members of recently deceased patients with Alzheimer's disease about their caregiving experiences. The purpose of this study was to develop recommendations for policy changes which would remove some of the barriers interfering with appropriate end-of-life care for patients suffering from Alzheimer's. Some of the barriers which we identified were lack of support for home care and day care and of course, the requirement for a six-month survival prognosis to be eligible for hospice.

Ladislav Volicer: I already mentioned it a little bit, in the three circle model, that what's important are the medical issues, psychiatric issues and behavior, and meaningful activity. And only when patient needs in all of these domains are met can we talk about providing high quality of life for the patients.

Ladislav Volicer: The interface between meaningful activities and medical issues is mobility, which is very important because movement, specifically walking, provides an outlet for physical energy. Walking provides some meaningful activity for people with dementia. Just walking around is very useful. It helps them do something that they like. So it's very important to try to preserve mobility as long as possible and it's important for long-term care institutions to create safe spaces for patients to walk in without getting lost.

At the same time, lack of mobility has medical consequences. When patients are unable to ambulate any more, they have higher incidence of pneumonia, urinary tract infections, and of course pressure sores. Then the interaction between the medical and psychiatric issues leads to questions of comfort, which we already discussed. That's very important, and it points to the importance of trying to provide appropriate medical care rather than inappropriate, aggressive medical care. Overly aggressive medical care for patients in late stages of dementia just increases the discomfort of the patient without any benefit to the patient. Because as we showed, in advanced dementia, antibiotic treatment, which usually requires aggressive interventions as well, is not really beneficial.

Ladislav Volicer: The use of antibiotics doesn't increase comfort. We found, using the scale that Ann designed, that you can keep patients as comfortable by using antipyretics and analgesics as if you gave them antibiotics. So the third interface is between the meaningful activities and the psychiatric symptoms, and that is the issue of mood - with possible depression, which is very common in patients with Alzheimer's. Yet, depression is often underdiagnosed and undertreated because psychiatrists sometimes look for more verbal expression and more verbal symptoms, which the patients with dementia are unable to provide because of their speech difficulty. So you really have to look more at non-verbal symptoms of depression - facial expression, mood, food intake, sleep, and things like that. Often, the anti-depressant treatment improves behavioral symptoms very much, allowing the patient to participate in activities and therefore improve his or her quality of life.

Ladislav Volicer: Probably half of our patients are on anti-depressants.

Ann Hurley: I'll just comment on one more thing on mobility. Ellen Robinson, RN, PhD, who did the interviewing of the wives relative to living through their decisions, found that one of the concepts that came through loud and clear was the meaning of loss of mobility to the wives. As the disease progresses and the patient gets worse - when it ratchets down to that someone can't walk - that's just a milestone for them. So what we can do to use assistive devices to maintain mobility, such as the "merrywalker" is very important. The "merrywalker" is a device similar to the walkers children sometimes use before they can walk independently. The patient can lean on the frame for balance, get mobility assistance from the wheels, and sit back on a sling if tired without risk of falling and hurting him or herself.

Are devices like the "merrywalker" commonly available in less-privileged long-term care settings than the GRECC?

Ladislav Volicer: Yes. There are several models, actually, of these care devices. Some of them are better than others. Some of them are awfully big and made out of plastic tubes and so on. But it depends on the setting. If you have a lot of space, probably it doesn't make that much difference. But they are available, although not everyone uses them.

Ann Hurley: I wish I knew. That's a study on its own. I have a nurse colleague, Cornelia Beck, who once said, "Much as I love to do research, a part of me thinks you should call a moratorium on doing new research until we get people to use what we already know." I don't have the answer, but we do have to promote research-utilization to promote evidence-based care.

Ladislav Volicer: One of the barriers to implementation is existing policies. Some current policies are inappropriate or actually misguided, for instance, the issue of hospice and the requirement of a prognosis of less than six-month survival. The prognosis for six-month survival is very, very difficult to determine in patients with Alzheimer's because it's very difficult to predict how long they will live. It's such an unpredictable disease - even patients in very, very late stages of dementia sometimes live for years because they don't develop an infection, which is the most common cause of death in this condition. So the requirement of six month's prognosis eliminates or excludes a lot of patients who would be very appropriate for a palliative approach to care.

Education is clearly a problem, especially in nursing homes, where the staff turnover is so rapid. According to our experience, it takes up to a year for people who are relatively new to this kind of setting to learn to deal with this patient population and to become fully functional and fully aware. So if you have 100 percent turnover rate of nursing assistants in nursing homes, it's very difficult to have staff who really know how to deal with individuals suffering from dementia. This lack of staff continuity leads to low-quality care.

Lack of advance care planning among this population is another problem. Patients and families don't plan ahead of time. That's one of the biggest issues, too. That's what we are trying to push, this proxy planning, which Ann described and the involvement of the nursing staff such that you make the decision ahead of time; ahead of a crisis situation; in terms of the treatment limitations; in terms of the resuscitation, transfer to acute care setting, use of antibiotics; and things like that.

Are there lessons or take-home messages for other institutions for long-term care settings and hospitals that are especially important? Ladi, you mentioned one - the whole issue of limiting transfers to acute-care settings. When would it be responsible to transfer a patient with dementia to a hospital?

Ladislav Volicer: It certainly would be important for an issue of comfort. For instance, if someone breaks a hip and that hip can be repaired - if it was someone who was still walking. Fixing the hip certainly would require transfer to a hospital.

Ladislav Volicer: Eliminating tube feeding, and just continuing feeding by natural means, by changing diet and using correct nursing strategies.

Ann Hurley: When we talk at other VA's and in the community, people say, "Well, all right, you can feed by natural means, but you must have an army of people in your GRECC unit!" And, surprise, surprise, we are staffed with fewer people than there are in the community in terms of the ratio of providers to veterans. Seeing is believing, so we invited people to come on up to the GRECC and see what staff here do even with limited numbers of people. Nursing staff alter the consistency of the food and use strategies to get around eating difficulties. Persons with Alzheimer's disease can do a number of things to refuse food, and so it all depends on what they're doing to refuse food. Are they pouching it, i.e., keeping the food in their cheeks? Do they kiss the spoon? We developed a videotape so that people could see our approaches to dealing with these challenges without having to come to Bedford. You need to provide instruction if you want others to implement the findings of your research or to try something new, like using natural feeding techniques instead of tube feeding.

Ladislav Volicer: I'm not sure I agree with Ann about the staffing ratios, actually. But I think the staffing is about similar. I wouldn't say that our staffing is worse than what's on the outside.

Ladislav Volicer: That's the most important - the staff education and also staff supervision. I think it's important to provide supervision with RNs and LPNs over the nursing assistants. Unless you have that supervision, and very careful supervision, there is no way to know if good care is actually provided.

Ann Hurley: When the Alzheimer's Association revised the pamphlet "Key Elements of Dementia Care," we were asked to do the chapter on staffing, and we wouldn't commit to a number. Everyone wants the ideal staff-patient ratio - the number, the number! - so they can show a piece of paper to somebody.

Ann Hurley: Because things are so variable that one nursing assistant doesn't equal another nursing assistant. For instance, there are some nursing assistants at the Bedford VA who are superb, superb, superb, superb. They have been on the units for years and years and years, just love the patients, and it shows. Whereas, in some community nursing homes, the staff might be a poorly paid minimum-wage earner, a mother with a delinquent payer of child support who is trying to keep body and soul together and doesn't have the training or the understanding, and had to take the job because there was no other job available. It's hard to get people for some of those positions. Five unmotivated or overwhelmed-by-life nursing assistants don't equal one superb nursing assistant.

Any parting thoughts?

Ladislav Volicer: Especially when we talk about end-of-life care, it is important to remember that even patients with very advanced dementia are still aware of the environment and still require comfort measures. These people still require stimulation, meaningful activity, or meaningful environmental stimulation. There are some people who claim that patients with advanced dementia get into a persistent vegetative state, but I strongly disagree with that.¹² I think that it's crucial to recognize that people with very advanced dementia are still sentient human beings who are aware of the environment and still require comfort measures and stimulation.

References

1. Volicer L , & Bloom-Charette L, eds. Enhancing the Quality of Life in Advanced Dementia. Philadelphia: Taylor & Francis. 1999.  [Return to Featured Innovation]

2. Volicer L, Seltzer B, Rheaume Y, Karner J, Glennon M, Riley ME, Crino P. Eating difficulties in patients with probable dementia of the Alzheimer type. Journal of Geriatric Psychiatry and Neurology. 1989;2(4):188-195.[Return to Featured Innovation]

3. Hurley AC, Volicer B, Mahoney MA, Volicer L. Palliative fever management in Alzheimer patients: Quality plus fiscal responsibility. Advance Nursing Science. 1993;16(1):21-32.[Return to Featured Innovation]

4. Fabiszewski KJ, Volicer B, Volicer L. Effect of antibiotic treatment on outcome of fevers in institutionalized Alzheimer patients. Journal of the American Medical Association. 1990;263:3168-3172.[Return to Featured Innovation]

5. Hurley A, Volicer BJ, Hanrahan PA, Houde S, Volicer L. Assessment of discomfort in advanced Alzheimer patients. Research in Nursing and Health. 1992;15:369-377.[Return to Featured Innovation]

6. Mahoney EK, Hurley AC, Volicer L, Bell M, Gianotis P, Harsdhorn M, Lane P, Lesperance R, MacDonald S, Novakoff L, Rheaume Y, Timms R, Warden V. Development and testing of the resistiveness to care scale. Research in Nursing and Health. 1999;22:27-38.[Return to Featured Innovation]

7. Drachman DA, Swearer JM, O'Donnell BF, Mitchell AL, Maloon A. The caretaker obstreperous-behavior rating assessment (COBRA) scale. Journal of the American Geriatrics Society. 1992;40:463-470.[Return to Featured Innovation]

8. Fried VA, Gillick MR, Lipsitz LA. Short-term functional outcomes of long-term care residents with pneumonia treated with and without hospital transfer. Journal of the American Geriatrics Society. 1997;45:302-306.[Return to Featured Innovation]

9. Volicer L, Rheaume Y, Brown J, Fabiszewski K, Brady R. Hospice approach to the treatment of patients with advanced dementia of the Alzheimer type. Journal of the American Medical Association. 1986;256:2210-2213.[Return to Featured Innovation]

10. Hurley A, Bottino R, Volicer L. Nursing role in advance proxy planning for Alzheimer patients. Caring. August 1994;72-76.[Return to Featured Innovation]

11. Hurley AC, Mahoney MA, Volicer L. Comfort care in end-stage dementia: What to do after deciding to do no more. In: Controversies in Ethics in Long-Term Care. Olson E, Cichen ER and Libow LS, eds. New York: Springer Publishing Co. 1995, pp 72-86.[Return to Featured Innovation]

12. Volicer L, Berman SA, Cipolloni PB, Mandell A. Persistent vegetative state in Alzheimer disease: Does it exist? Archives of Neurology.1997;54:1382-1384.[Return to Featured Innovation] 

[Go on to second Featured Innovation: Interview with Scott Trudeau]