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

An interview with John Larkin, MD, Ellen Bartoldus, MSW, CSW, and Nereida Borrero, RN, MSN, GNP

The Brooklyn Hospital Center, in collaboration with the Wartburg Lutheran Home for the Aging, was awarded a grant from the United Hospital Fund to create a program to assist caregivers of neurologically impaired African American patients in northern and central Brooklyn during the acute and chronic phases of illness. They recognized this group as one that contains a long history of informal caregiving; often these caregivers do not seek assistance or tap into the available support services.

In the following interview with Staff Editor Samantha Sodickson, the two principal investigators of the Caregiver Initiative, John Larkin, of Brooklyn Hospital, and Ellen Bartoldus, of Wartburg Lutheran Home for the Aging, together with geriatric nurse practitioner Nereida Borrero, discuss how the program came together, the community it serves, and what other hospitals can do to replicate this initiative. [Citation: Larkin J, Bartoldus E, and Borrero N. Family Caregiving Initiative: Supporting Family Caregivers of Neurologically Impaired Patients: An interview with John Larkin, Ellen Bartoldus and Nereida Borrero, by SL Sodickson, Innovations in End-of-Life Care, 2001;3(2), www.edc.org/lastacts]

Program Beginnings and Design

When did the Family Caregiving Initiative begin, and what is the goal of the program?

Nereida Borrero: The goal of the program is to reduce caregiver burden by providing services to caregivers of neurologically-impaired blacks in northern and central Brooklyn.

Ellen Bartoldus: The program was started in 1998 when Brooklyn Hospital and Wartburg received the initial grant from the United Hospital Fund. The first phase of the program focused on exploring the needs of caregivers of neurologically impaired Blacks in our community. As a result, we were awarded a two-year implementation grant and the program has been flourishing.

Can you tell me a bit about that population, and how you chose them?

John Larkin: The population of northern and central Brooklyn, the community surrounding Brooklyn Hospital, is predominantly African American. The caregiving burdens of African Americans were described in a New York Times article,¹ which showed that the African American population was less likely to come forward for help, and more likely to have a long tradition of informal family caregiving. There has been an observed reluctance in the African-American community to place family members in nursing homes and families often carry the burden of caregiving without formal assistance. So, the needs of African American caregivers seemed like a logical focus for our efforts. We chose to focus on caregivers of neurologically-impaired individuals because these individuals often exhibit particular cognitive and behavioral changes which are chronic and involve slow debilitation over time, and so present unique challenges for caregiving.

EB: We began our project with a series of community focus groups. Caregivers were identified through Wartburg's Mobile Meals Program clients and Brooklyn Hospital's discharged patients. In these focus groups, caregivers were asked to specifically identify what their issues and frustrations were. There was a great deal of discussion about perceived and actual failures within the health care system, communications issues between physicians and caregivers, as well as family conflict and a sense of isolation among caregivers. Out of these focus sessions, we formed a Community Advisory Board to guide us with program design and implementation.

Can you describe what the disease process is in neurologically-impaired individuals, and what the impact is on these caregivers?

JL: The majority of our neurologically-impaired patients are patients with Alzheimer's disease, a long-standing, chronic disease that goes on for many years. We also see a lot of stroke victims. For patients with Alzheimer's disease, there's an increased caregiver burden, especially if it is a child who is caring for the parent. The role reversal between parent and child is quite stressful, as well as seeing the parent slowly debilitate.

EB: We also found that in the neurologically impaired population, the ongoing behavioral issues, such as wandering, repetitive communication, incontinence and so forth, create a type of constant stress which is different from the physical stress of providing care. These behavioral changes are frightening to caregivers, who often have no experience in dealing with these behaviors. Caregivers sometimes perceive these behaviors as a "personality change", leaving the caregiver frustrated and uncertain as to how to relate to the patient.

Collaboration Between Hospital and Nursing Home to Ease Caregiver Burden

Can you describe the collaboration that Brooklyn Hospital Center has with Wartburg Lutheran Home for the Aging?

EB: Brooklyn Hospital and Wartburg had been discussing areas for collaboration in early 1997. When the UHF Family Caregiving grant became available, it was an area of mutual interest for both institutions. Dr. Eugenia Siegler initiated the program on behalf of the hospital. She and I began to speak about the ways in which the hospital and nursing home could offer complementary services for patients. While the focus of the hospital is on the provision of acute care, nursing homes meet the daily needs of residents to help them lead functional lives. Traditionally, there has not been good collaboration between hospitals and independent nursing homes. It was important from the beginning to develop ongoing communication between the hospital and nursing home. The hospital's expertise lies in treating acute illness, while the nursing home provides the day-in and day-out caregiving, similar to what a caregiver at home would do. Through the collaboration of these two institutions, we are able to bring particular skills to the table that would help caregivers. For example, nursing homes are traditionally very good at healing and preventing decubiti (bedsores). We're also good at managing behaviors, and we are very good at managing behaviors without restraints. The hospital has a lot to offer in the realm of up-to-date medical treatment and care. Therefore, this joint Family Caregiving Initiative makes perfect sense.

How is the collaboration implemented in terms of staffing the program?

EB: Dr. Larkin and I jointly oversee the operations of the program. Program staffing consists of representatives from both facilities. Nereida Borrero is a member of the Brooklyn Hospital staff. Lisette Sosa, CSW, one of our social work consultants, is the Director of Social Work at Wartburg. Caregivers were recruited both from the hospital and from Wartburg's community based programs. Nereida did a lot of active recruiting among the hospital staff in order to establish linkages for referrals. We have learned a lot from one another, which has greatly contributed to our success.

What kind of response did you have from hospital staff?

JL: The hospital as a whole has responded very well to this. It has been a team effort. A lot of our workshops have been conducted by different disciplines in the hospital, such as nursing, the emergency department, our geratrician, and our hospital ethicist. Our discharge planning nurses are, most times, responsible for the initial referrals; they received it quite favorably.

EB: Hospital staff has also responded favorably to the collaboration with the nursing home on specific care skills and workshops.

Implementation of the Family Caregiver Initiative: Identification, Referral, and Visits

Could you walk me through the process of identifying the patient and putting them into the program, all the way through the home visit?

JL: The discharge planning nurses, who have been made aware of this program, refer the patient to Nereida, who would then contact the patient in the hospital for an initial interview. We also encourage all of our physicians to refer families from their practice.

NB: I usually see the patient and the caregiver before the patient is discharged from the hospital. At that time I explain the program and assess the needs of the individual. I offer support and facilitate the transition from the hospital into the community by identifying equipment or supplies needed in the home before the patient is discharged. When the patient goes home, I follow-up with a scheduled visit to assess the home for safety and I offer education and ongoing support. If the patient goes into acute rehab, I keep in touch with the caregiver by phone and by mail. When the patient goes home from rehab, I follow the same process as when the patient was discharged from the hospital

In my follow-up home visits, I do assessments to identify the home safety issues, as well as determine if there is any additional equipment or supplies needed at that time. I also identify if there are any family dynamics problems that I can help with. Sometimes, family members complain about other family members not cooperating enough, or not helping out with the patient. They may be having problems communicating with one another. On a few occasions, we've had family group discussions together with the social worker and myself. Other times referrals are made for individual, short-term counseling. I also teach necessary skills to reduce caregiver burden.

What kind of skills are those, generally?

NB: I teach the family caregiver how to provide skin care, wound care, tracheal care, how to do tube feedings — any other skilled care needs that apply. For example, let's say the patient is going home with a new PEG (percutaneous endoscopic gastrotomy) tube. This could be very stressful to the caregiver because, most likely, this is totally new to them. The family caregivers are usually instructed in the hospital before the patient is discharged, but often during this time period caregivers feel frightened and overwhelmed. It takes time to get used to doing certain treatments—they need more than a quick lesson. It's a positive experience for caregivers when I'm able to follow up with training at home because even if the patients goes home with home care services, in the State of New York, home attendants and home health aides are not permitted to perform any skilled nursing functions such as wound care, tracheal care or tube feedings. The family has to be able to do that themselves.

Do they have access to you after you make a home visit, if they have other questions?

NB: Yes, they do. I have voicemail, so they call me and leave a message, and then I call them back if I'm not in the office. They know that they have access to me almost 24 hours a day because I also retrieve my messages from home. If there's an acute situation, I call them. Many a time I have called someone from my own home.

How many patients and caregivers do you have enrolled in your program at any one time? Do you handle all these families yourself?

NB: Seventy-eight families have been enrolled as program members since we began in 1998. Five members have been placed in a nursing home. Thirteen members have expired. One member I was unable to contact, probably because they moved or didn't return my calls, and two were discharged from the program because they didn't want to participate any longer. One family moved out of the area. So, the total number of active families right now is 56.

With regard to collaboration and assistance running the program, I work very closely with two social workers. One social worker helps me a lot with the family's practical needs, for example, she helps if a family needs assistance getting entitlements, or increasing hours for home care, or accessing other resources in the community that they might need, but don't know how to go about getting. Then, there is also another social worker who helps me with the counseling and the support groups.

Alleviating Isolation, Sharing the Burden: The Caregiver Notebook, Support Groups, and Caregiver Workshops

JL: One of the complaints of the caregivers is that there's a feeling of isolation and loneliness. The support groups, which are run by a trained therapist, Beth-Ann Gillery, CSW, have worked quite well in getting individual caregivers together in a group. This part of the program is essential in that it provides caregivers with an opportunity to air their collective concerns about family caregiving, and allows individuals to share their personal coping skills with their peers. The workshops have also helped by reinforcing and teaching caregiver techniques to the family members. We also have a video library set up at the Brooklyn Hospital for which Nereida is responsible. In addition, Nereida compiles a loose-leaf notebook for each caregiver that is basically tailored to the patient's individual illness and can help to educate the caregiver.

Please describe the caregiver notebook that you provide for each family.

NB: Because we deal mostly with Alzheimer's patients, I have a separate notebook for people with Alzheimer's disease, as well as one for patients with stroke. A couple of our patients have multiple sclerosis, though not too many, and some have Parkinson's disease. So, each notebook is tailored to the needs of the individual. Each caregiver notebook is divided into different sections: Disease Process (signs and symptoms, management, complications); Caregiver Needs; Resources; Home Safety Issues; Skin Care; Legal Issues (advance directives, living will, power of attorney, and so forth) and, if needed, information on tube feeding.

Can you tell me about some of the issues that are addressed in the support groups?

JL: Beth-Ann has done a wonderful job of getting the caregiver to realize that, in many cases, there is a need to acknowledge the anger and guilt involved in being a caregiver, and that these are natural reactions. We know that caregivers do an incredible job, and a noble job, but there is still a reaction to a loved one who can no longer care for themselves. Part of the support is getting caregivers to recognize this, and to vent it in more positive ways, as opposed to neglecting themselves, and therefore, inadvertently, not be able to take care of their loved ones.

EB: We also found that caregivers often have health concerns of their own. For example, one caregiver was a diabetic and had not been seen by a physician for quite a while. We were able to convince her that she needed to take care of her own diabetes in order to function as a caregiver. So, we've been trying to make caregivers aware of the importance of self-care.

Also, the social workers have found that the release of emotion is very helpful—that people need to cry, and to laugh. They need to be touched, to be hugged by somebody. They benefit from knowing that they're not the only ones struggling with these issues; that they're not crazy, and it's not that they just can't cope. The support groups have helped caregivers realize that "I'm not the only one who feels that way." Then they can make a shift from having the disease run their lives to knowing that they do have some power and control. It helps them to feel empowered. It has been interesting to see natural leadership develop within this group. We really encourage folks to say, "You know what, I am not the victim here. I can be in control." This has been really positive.

JL: Basically we encourage them to think about self. A lot of times they get so caught up in the caregiving that they often neglect themselves, which is a factor in the increased mortality associated with family caregiving.

How are caregivers able to come in to support groups and workshops? Do you have any arrangements for respite care for their loved ones?

NB: There are a few places that I usually recommend for respite care. I make the initial phone call to get in touch with the respite care service. Then I give the information to the caregiver and assist in any way that I can for the placement. The caregivers seem to be able to come to the workshops because we hold them right in the hospital, and most of the caregivers and patients live nearby.

JL: One of the things that we stress in the support group is sharing some of the burden. We know that the caregiver most likely will be the eldest child, usually the eldest female child. Beth-Ann has been working with the caregiver to learn when they need to ask for help, and when the other family members, for example, the other brothers and sisters, must share some of this burden.

EB: One of the other things that we found was the need for education. When we started this project we were amazed by the caregiver's lack of concrete information. One of the first workshops we did, based on the first recommendation from our Advisory Council, was instruction on how to communicate with a doctor. In that workshop, we were able to get the doctor's perspective and the family member's perspective. We, as a team, learned an awful lot about the process of communication between physicians and family members.

After each of the workshops, which are primarily educational in nature, although they do take on a element of support, we create what we are calling "Quick Tips." These are cards developed from the educational workshops. We take notes during the program, and then incorporate the questions the caregivers ask and suggestions for action. Ms. Gillery designs them, and caregivers can carry them in a pocket or purse and pull them out for reference when information is needed to handle a certain situation.

The tip card on making a visit to the doctor (see above) includes suggestions for making a list of the questions you want to ask, focusing on the critical questions and writing down the physicians answers and comments. A new "Quick Tip" card we are working on relates to navigating the hospital emergency department. These cards give folks a lot of information right at hand when they are feeling overwhelmed and confused with concrete steps to follow.

JL: The emergency department workshop probably deserves some special mention, because it was one of the more successful workshops. The chairman of the emergency department here at the Brooklyn Hospital facilitated it. He went through the hierarchy of the emergency department and broke it down for the caregivers and patients, so it wouldn't be as confusing for them when they arrived in the emergency room. We then conducted a tour of the emergency room, and explained all the different aspects of the emergency room from the initial triage, to the emergency department's evaluation, to the admission's process. Feedback we gathered from our Community Advisory Board suggested that this process was especially stressful. We had an excellent response to this workshop and it reinforces the hospital as an ally in the community.

EB: It also relieves some anxiety for the caregivers. They were able to see what the emergency room looks like and were told, "When this happens, this is who you call. This is the title of the person in charge." It was very helpful. I personally learned a lot, and I think it was very reassuring to the families.

Measuring Caregiver Burden

How are you assessing the caregiver burden? How are you measuring the effect of your program?

JL: We're using the Robinson Caregiver Strain Index Questionnaire. At baseline zero, six months and twelve months, caregivers fill out the questionnaire, and we compare the data at those times.

Have you been able to measure any change in caregiver health, satisfaction, or ability to cope as a result of the program?

JL: Although the results are still being analyzed for final publication, preliminary data shows a decrease in caregiver stress, particularly as it relates to a "sense of feeling completely overwhelmed". We believe this to be significant and look forward to the finalization of the data. I think that we will have some pretty good numbers reflecting decreased caregiver stress.

NB: I experienced something wonderful yesterday, which I think speaks to this topic. I was visiting a family in which the caregiver is a 35-year-old male, who is taking care of his mother. I know it's very overwhelming for him because one of the things he said is, "I feel very uncomfortable and very embarrassed to wash my mom." That's so real for many caregivers. But while visiting this person, he said to me, "I can't believe how much help I've been getting from this program. I wish I could tell more people because before I started with this program, I didn't know what to do. I was so overwhelmed!" He's still overwhelmed, I'm not saying that everything is perfect, but he says, "I know that I can call you anytime." He can call his doctor. He also knows that there are a lot of resources available that I'm working to connect him with.

Are there any other kinds of measurement that you're hoping to start using as the program continues?

EB: We would like to see if our program has had any effect on reducing the number of "non-emergency" visits to the emergency room. Since this was not part of our original project design, we have no baseline data, but we do know that emergency room visits are stressful to both the patient and caregiver. This was clear in both our initial focus groups and caregivers request for a workshop on the ER. If education and support can decrease unnecessary use of the emergency room, it would be beneficial to both patients and the hospital.

JL: We have had an overwhelming response to this program in the community; there is a great need for it. This is actually a limited program right now, so you can imagine what would happen if it were open to greater numbers of patients.

Do you feel that given the current scope of your program, there are populations out there that you'd like to be able to reach, but cannot as yet?

JL: Yes. Cancer patients would be very interesting to work with. Many patients could benefit from this, not just neurological patients.

Is anyone ever turned away from your program?

JL: We try not to do that. We have already gone over our target number of enrolled families, but we've definitely continued to provide information to all the people who are referred to Nereida. All patients and caregivers are given invitations to the support group and the workshop, but they don't all get the benefits of the home visit. Instead, we give them an open invitation to use the tools that we have.

Funding and Replication of the Family Caregiver Initiative

Can you speak about the financial piece of the program? Is it something that is going to be able to keep going if grant funding were to stop?

JL: Of course, we'd love for this program to continue. We'd love to even expand it for the hospital. I believe we've secured funding for at least another year, but after that time we are going to explore other possibilities for getting some additional funding.

EB: It is important to note that both Brooklyn Hospital and Wartburg Lutheran have supported the program with in-kind services. Most of the workshops have been given by Wartburg and Brooklyn Hospital staff without reimbursement. This collaboration has been an important experience for all of us and we believe in its value to caregivers. We really do want to see it continue. Although special grant funding has been invaluable to this project, I believe that strong collaboration and cost sharing between health care institutions can keep this program going. There are significant benefits to both institutions which could be argued are worth the financial investment. For the nursing home, which is often seen in isolation from the community, it provides an opportunity to be seen as a resource for education and support, as well as a source for available residential care when care at home is no longer an option. For the hospital, it demystifies the institution and encourages caregivers to see the hospital as an ally. The Family Caregiving Initiative can help to improve the public perception of the hospital as a vital part of the community and can benefit individual physicians through better coordination of services to their patients. A relatively small investment can reap substantial rewards.

Barriers to Implementing the Caregiver Initiative: Trust and Respite Care

Have you had any barriers to implementing your program?

NB: One of the barriers I have found lies in gaining the trust of the family caregiver. They might be reluctant to take advantage of our service due to fear of an undisclosed financial burden. This is not something that we have talked about a lot, but I'm usually the first person they make contact with after they are referred to the program. Often, when I interview the caregiver and offer this service, they can't believe that they will not be charged.

How are you able to get them to make that leap of faith? How do you get them to really come to trust you?

NB: I'm very honest. I explain about the program—how it started, how it's funded, and how they will never receive a bill. Making the home visit also reinforces their trust. The key is consistency and follow-up. In the very beginning they might have some reservations, but when I follow up with the phone call, as well as with the home visit, and when they call me and I respond, they know that I'm really there for them. That's very important.

EB: I think one of the other barriers is the caregiver's need to be relieved of his or her caregiving duties to get to the workshops and the support groups. We try to be extremely flexible in terms of time, but I think that not having respite care available has been a barrier for some caregivers. I would love to be in a position where this program could send in substitute caregivers for two hours. Another piece, too, is that caregivers tend to see the hospital and the nursing home as these big institutions. Nereida has been able, through the force of her personality and skill, to break down that barrier to some degree.

JL: We feel that the hospital is truly an ally for the community, and the caregiver is an ally for the physicians in the hospital. Without them, physicians would have a much harder time meeting these patients' needs and the burden to the hospital would be that much greater.

Replication and the Importance of the Psychosocial Aspects of Caregiving

If other hospitals were going to try to replicate your program, what kinds of things would they need to have in place, and what kind of advice would you like to offer?

JL: The discharge planners would need to be fully aware of the program and then assist in identifying who the caregivers are in order to refer them to the nurse practitioner before discharge.

EB: We have been working with the Brooklyn Hospital Home Care Program, which has been quite helpful. Through this collaboration, we can offer a better coordination of services to our caregivers. For example, we can utilize home care social workers and nurses in conjunction with the services offered through our program. Our nurse practitioner often collaborates with the rehab team from the Home Care Program to ensure that the patient receives proper treatment and necessary equipment. This takes some of the burden of coordinating services off the caregiver.

NB: I also go to the hospital's weekly length-of-stay meeting, so I'm able to identify cases who are really in need of this program. Although we receive referrals from the discharge planning nurses or the utilization review nurses, doctors also call me and identify some of the patients who are in need of our services.

EB: One piece of advice would be: Do not confine your vision to the medical model. It is important to see that caregiver strain and stress involves more than just the medical and physical aspects of care. The full partnership between the hospital and nursing home has helped us focus on psychosocial, spiritual, and emotional issues, in addition to medical and physical care. I think the success of our program lies in the fact that we have done this in a coordinated and holistic way.

NB: Integrating all the pieces that Ellen just mentioned is very, very important. The population that we deal with here in Brooklyn is a very spiritual population, very religious. The professionals who are involved with this program have to be able to understand and respect those beliefs.

Is faith or religion directly addressed in your workshops or your support groups?

NB: I think it's woven into the program in general, starting with the first interview, and it goes on with the visits and support groups and interaction with the caregivers, and also with the patients.

EB: We've encouraged the caregivers and patients to make use of the resources within their own communities of faith. In Brooklyn, particularly in the African-American community, churches play an incredibly central role. So, we've talked to people about really accessing those services available in their spiritual communities.

Decision Making, Advance Care Planning, End of Life

NB: I want to mention that beginning with my first visit in the hospital, we also assist families with decision making, nursing home placement, and sometimes the placement of a patient in an acute rehabilitation center. Some families are very skeptical about sending their loved ones to a nursing home, and when they think about acute rehab, I have to explain that the placement is temporary and for their own benefit. I also have written letters of support for jobs, especially when the caregiver can't go to work in the beginning. Caregivers have a great need for people to understand what they are going through. I also assist them with DNR orders and advance directives. We did a caregiver workshop on advance care planning and end-of-life issues.

When you raise the end-of-life discussions with caregivers, what's the reaction or response?

NB: In the very beginning, sometimes it's denial. Then, as we talk about it more, they come to understand that it's important to talk about these issues.

EB: Actually, the social worker focused a support group session on how to begin to raise these difficult questions. The workshop focused on advance planning and end-of-life decisions. It was conducted by the hospital's ethicist, Alice Herb, JD, who covered specific issues in end-of-life care. Caregivers find it hard to talk about these things. Few of us want to admit we will have to face these decisions. But I think it's helpful for the caregivers to begin to think about and realize the importance of understanding the values and desires of the person they're caring for, so that they know what that person really wants. Then they are working much more in tandem, particularly when it comes to some of the difficult end-of-life decisions.

In Conclusion

Is there anything else that I haven't covered that you think would be important for our readers to know?

EB: I would like to say that there's been a great deal of—and rightly so—emphasis placed on end-of-life care lately, which is a critical issue. But there is a time before end-of-life care, which stands between wellness and functioning and death. That is chronic illness, and the issue we are trying to address. It's one thing to take care of someone for three weeks. It's another thing to take care of them for three years.

NB: Or ten years.

EB: That is the place where the Family Caregiver Initiative really tries to step in and meet the caregiver's needs.

References:

1. Rimer S. Blacks carry load of care for their elderly. New York Times, March 15, 1998.[Return to Promising Practice]

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