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

A Nurse Practitioner Palliative Care Consult Service For Nursing Homes

An Interview with Therese Rochon, RNP, MA, MSN

In Rhode Island, where one in three deaths from chronic illness occurs in a nursing home,¹ Home and Hospice Care of Rhode Island (HHCRI) in Pawtucket, RI, has initiated a palliative care consultation service to provide care to nursing home residents who may not be eligible for the Medicare Hospice Benefit, or have chosen not to use it. This service is distinctive in that it highlights the role of the nurse practitioner in providing consultation on pain and symptom management, and coordinating other aspects of palliative care for nursing home residents. This initiative was developed by Therese Rochon RNP, MA, MSN, a family nurse practitioner at HHCRI. Recently, to meet a growing number of referrals to the service, a geriatric nurse practitioner, Bonnie Evans, RNP, MSN, joined Ms. Rochon as a second consultant. Dr. Joan Teno, Associate Medical Director at HHCRI, provides medical expertise and collaboration to the service.

Another distinctive feature of this hospice-based, nurse practitioner palliative care consultation service is that HHCRI already had relationships in place in many nursing homes around the state, where they had been providing hospice care for several years. At this time, HHCRI has contracts with 65 of the 107 long-term care facilities in Rhode Island to provide care under the Medicare Hospice Benefit. HHCRI recognized the need and opportunity to expand services beyond the provision of the Medicare Hospice Benefit to nursing home residents who would benefit from palliative care earlier in the course of their disease. Until the advent of this nurse practitioner palliative care consultation service, these residents did not have access to this kind of specialized care. [Citation: Rochon T, Heller KS. A nurse practitioner palliative care consult service for nursing homes: An interview with Therese Rochon. Innovations in End-of-Life Care. 2002;4(2): www.edc.org/lastacts/]

Special Niche for Advanced Practice Nurses: Creating the Program

What steps did you take to plan the palliative care consult service?

I wanted to bring advanced practice nursing into end-of-life care and had studied how these skills could be incorporated into palliative care. Once certified as a nurse practitioner (NP) in May 2000, I discussed my ideas with Analee Wulfkuhle, president and CEO of HHCRI. Analee Wulfkuhle was very open to the idea, but she wasn't familiar with the advanced practice nursing role, including the scope of practice, or how the care NP consultants could offer would differ from hospice care. So, at the outset, I took the opportunity to provide information on the role of the nurse practitioner, as well as where, and how, we could bring palliative care into long-term care.

Our first step was to make sure that the program was within the framework and the mission of HHCRI. We found that it clearly was, insofar as their mission was to serve patients who were in their final days, with an emphasis on management of pain and symptoms.

Then, we explored how we could market this program to all of the different facilities. Should we look only at the nursing homes in which our long-term care team was currently providing hospice care, or should we include other skilled nursing and assisted living facilities among the target settings for palliative care services? Initially, we marketed the service in the central part of Rhode Island. We haven't sought to actively expand to the southern part of the state, mainly because of the distance, and time that consultations there would involve. Nursing homes in other parts of the state are aware of our service, but we haven't had many referrals from outside of central Rhode Island.

As part of the marketing effort, I joined our Nursing Home Liaison, Diane Madsen, RN, when she would go to the nursing homes to speak with the facilities' director of nurses, and occasionally with other administrators. She would update them on hospice concerns, and we would present the palliative care service as a new program at HHCRI. Diane would later continue marketing to some of the nursing homes on her own, as she developed a clear understanding of how the program could work.

Nursing Home Receptivity to the Service

What kind of reception did you get from the long-term care facilities you visited?

For the most part, they thought that a palliative care consult service was something that was greatly needed. They saw their staff wanting some help in thinking through particularly difficult situations, or some information on how to speak with the physician about residents' pain such that it would be treated appropriately. They recognized that their nursing staff needed some education about why certain medications were given, and how to give them appropriately. This was particularly needed with respect to opiates; they were seeing variation on different shifts—some nurses would give an opiate, but others would hold it.

One facility was reluctant to use a palliative care consultant and not sure that this was something that should be done. They first thought we were "double dipping," or doing something that hospice shouldn't do. When we made clear what additional services we were offering, that notion was dispelled. But that was the only place where we had difficulty. Most physicians were open to receiving consults, because they'd feel frustrated with not knowing what medications to recommend. I think we had only one physician who preferred not to have any consult services offered.

After we made these marketing visits, the director of nursing at a facility would then present the idea to the staff, and it seemed that the nurses began to think of cases for which a palliative care consult might be helpful. In a couple of homes, the director of nurses asked us to provide in-services for the entire nursing staff. We found that as nurses increased their understanding of palliative care, we received more requests for consults from those facilities.

The Scope of Palliative Care Consultation Services

What is the scope of palliative care services you sought to provide through this new service?

I saw palliative care as taking an interdisciplinary approach, seeing a patient holistically, and working not only with the patient, but also with the family. We have within our purview the psychosocial and spiritual, as well as the physical aspects of care.

To what extent have you been able to realize that vision?

We were hoping to start out right away with a social work component, but have not yet been able to include this service. We need to look more closely at the reimbursement policies for social workers.

Instead, we've been able to provide the full scope of palliative care services indirectly, by coordinating the services with existing staff in the nursing homes. All of the nursing homes have social workers; most have chaplains or some type of pastoral care. Bonnie Evans and I always get reports from the nursing home social workers, as well as the nursing and medical staff, so that we can encourage the provision of additional or different services through the social and spiritual resources already within a given facility. In addition, we are able to use our own HHCRI bereavement counselors for follow-up with the family of any patient and the nursing home staff.

Can you give a specific example to show how the palliative care consult service facilitates or directly provides the full scope of palliative care services to a patient and family?

Let me offer the example of a young woman, Madeline, recently diagnosed with advanced ovarian cancer to illustrate the holistic approach of the palliative care consultation service. Her immediate needs were for improving pain control and treating dyspnea, but it was clear that these symptoms were exacerbated by social and spiritual issues. Family members differed openly about her care, and the future care of her young daughter about whom she was very concerned. Madeline had difficulty with any type of change and had expressed regrets about her past, wishing she could have done things differently. After completing a chart review, conducting a complete physical exam and a family meeting, I met with the primary care provider, (also a nurse practitioner), social worker, and primary nurse at the nursing home. We discussed the ways in which her social and spiritual issues might be affecting her physical symptoms and then established a palliative plan of care. The plan included increased support from the social worker, continued visits from her family priest, and changes in the medical plan of care as well. Madeleine did not want to become a hospice patient, although from our perspective, she had that option, including transfer to the in-patient unit.

Madeline died about two weeks after being referred to the palliative consult service. Even in this short span, we observed what looked like improved quality of life. Namely, she was comfortable prior to her death and was even able to get dressed, put on make-up, and go outside for one last time. She also seemed to find some kind of peace with her family.

Our services included bereavement care for the nursing home staff–nurses, aides and housekeeping—as well as for the family. The staff members were able to discuss stories, concerns and grieve together. Furthermore, staff was reassured that bereavement support would continue for the family.

Who is the main target of your palliative care consult effort?

The nursing home patient, but when there's family available, we always make contact with the family, as well.

We also focus on staff needs for education in end-of-life care. Most of the nurses working in long-term care in our state are graduates of two-year nursing school programs, and their education hasn't included anything about how to provide pain management or care of the dying. The End-of-Life Nursing Education Consortium (ELNEC)² offers valuable resources to nurses as does Betty Ferrell and Nessa Coyle's new textbook.³ We are educating nurses through in-services and consultation on pain management, on what happens at end of life, or on whatever issues seem to be arising in a particular facility.

Patients Served

How many nursing home residents are now receiving palliative care through your service?

Since we went into the field with this service in January 2001, we've done consultations for 151 patients. At any one time, my colleague, Bonnie Evans, and I are seeing 20 patients each. These patients have varying needs; some with a chronic illness might need to be seen every other week or once a month, in order to ensure that the person is comfortable. Other patients may be more in crisis. If it's a new referral, or if the patient is close to the end of life, we work with the nursing home staff more intensely, and see the patient more frequently.

What are the demographic characteristics of the consult patients you serve?

Of the 151 consult patients we have seen so far, 38 were men and 113 were women, and most were very elderly. The median age of our patients is 83 years old. We've had only 15 patients that were under age 60.

About 38 percent of these patients had different types of cancers, with the largest percentage of these (15 percent) lung cancer with metastasis. The next largest group (17 percent) has a primary diagnosis of arthritis. Almost every patient had some form of arthritis, however, even if they had cancer as their primary diagnosis, arthritis may be contributing to their discomfort. In this way, we provide overall management of their pain. The patients we saw with a primary diagnosis of arthritis requested to have our service because they had some decrease in functional status or increase in pain. Most patients had multiple co-morbidities, however, which were contributing to an overall general decline with a diminishing life expectancy. See Table 1 for the breakdown of primary diagnoses among these 151 patients.

Table 1: Primary Diagnosis of 151 Patients

About a quarter of the people we have worked with have died while under our consultation. These patients were not eligible for the Medicare Hospice Benefit because of continuing skilled or acute level of care or aggressive disease management. We have referred close to another 25 percent to the Medicare Hospice Benefit teams, and these people ultimately died under hospice care.

How are patients referred to your palliative care consult service?

In some of the facilities, the primary care provider will call us directly. In others, nurses on staff will make the referral. Although a nurse may initiate referrals, we always have to have a primary care provider's order. We are going in to make recommendations like any other consultant, but only at the request of the primary care provider.

Financing

How have you been able to provide these services?

To a large extent, by being creative. We started looking, first, at how we might be able to bill for such a service; second, how we could market the service; and then, how we could provide a true palliative care service. One of the big things we realized is that nurse practitioners could bill as an independent consultant practice just as physicians would bill, under Medicare Part B or through private insurance.

I think one reason why we have such a large number of referrals is that hospitals discharge patients who are very sick to these skilled nursing units, and families may not want to switch from skilled nursing care over to the Medicare Hospice Benefit. For a resident whose long-term care is covered by the Medicare skilled nursing benefit, there is a financial disincentive to switching to the Medicare Hospice Benefit. Once the resident is on the Medicare Hospice Benefit, the family has to pay about $250 a day out of pocket for the patient's room and board. In other words, Medicare won't pay both for skilled nursing care in a long-term care facility and provide a per-diem rate to hospice. However, Medicare will pay for a consultation along with skilled nursing care, whether it be for podiatry or palliative care. So, with our consultation service, we can make the last days comfortable for nursing home patients who are still receiving skilled nursing care, and so unable to access the Medicare Hospice Benefit.

For patients who can qualify for Medicaid to pay for the nursing home care, the decision to switch from skilled nursing to the Medicare Hospice Benefit is easier because finances do not influence it. Rather, a family can base the decision solely on the type of care they are seeking for their loved one. For those who do not qualify for Medicaid, however, it becomes a major financial decision for a family to say, "We want the Medicare Hospice Benefit." That's one of the reasons why our service is needed.

Challenges to Providing Palliative Care Consultation in Nursing Homes

What have been the major challenges of providing palliative care consultation to patients in the nursing home environment?

The barriers really overlap with the challenges. Some of these include:

Limited staff time to do palliative care. Unlike working with family members in a home hospice setting, in the nursing home you have a group of people who are caring for someone who is not necessarily a loved one. Often staff members are working double shifts, because there aren't enough staff, and so, they are very stretched. To try to titrate a medication, or go in and assess a patient on a frequent, regular basis—which is needed, especially while trying to get someone comfortable—is not always possible. It's not that they don't care, it's just that they're working under such constraints. These working conditions make trying to offer education, and have everyone on board with the pain management regimen a challenge. We are also working with three different nursing shifts.

High Staff Turnover. In addition, as you know, there is a major nursing shortage, and it seems like every three months there's a big turnover of nurses in these long-term care facilities. So, you may be with a staff that seems to be motivated, and they have the right rhythm of how to care for people at end of life, or they know how to give the pain medications properly, and then, for whatever reason, you have a big turnover in staff. When you have high staff turnover, suddenly referrals to our service from that facility decline for awhile, whereas they might pick up in another facility where that staff has gone. If the director of nurses has stayed involved, however, we continue to be seen as a resource despite these changes in nursing staff. Regular in-services and ongoing education become all the more important under these conditions.

Lack of communication and coordination of care across institutions. At times, communication of information from one facility to the next, whether it is from another long-term care facility or a hospital, becomes a barrier. For example, say someone is coming into a long-term care facility from a hospital, where they've received an extensive work-up. The discharge summary doesn't always come with the patient to the long-term care facility, so that you don't know the full history of the disease process and you have to track that information down. If a resident is coming into the nursing home from the community, most times, you don't have any past information and it can be difficult to obtain the history or records. Certainly, you may have to do some of this tracking when a patient is in his or her own home, but in a long-term care facility this coordination can become more complicated because there is no family member to track down reports and coordinate radiation and chemotherapy. These additional tasks fall on the nursing home, and important details can be missed due to their already stretched staffing situation. Our consult service has helped coordinate these pieces.

Physicians may not know the patients and their families. Another barrier is that the nursing home physician may not know the patient. When a person enters a nursing home, his or her former primary care provider usually does not continue to provide the care in that facility. So, at a time when patients may need the most intense services, they are being cared for by someone who doesn't know their history and doesn't know their family. That knowledge and history vacuum is hard not only for the person who's very sick, but also for the family, because they don't have that connection and communication with someone who knows what they and the patient have been through. We have discussed this problem with patients and families and encouraged them to set up an appointment with the primary provider. Sometimes a family meeting can take place at the provider's office or at the facility. The ongoing involvement of the longstanding primary care provider can be a real comfort to families. This meeting can be an opportunity to review previously discussed advance care planning and review the patient's goals for care. As the consultant I have been present for some of these sessions.

Resistance from community pharmacies used by nursing homes. I encountered some resistance from community pharmacists to our recommendations for opiates a couple of times during the first six months of the service. The pharmacist had concerns about what he considered high doses of opiates, so I asked our medical director to review the guidelines for cancer pain management with him. There have not been any controversies since, and I've learned that presenting more information to clarify an order is useful at the outset.

Resistance from physicians. Only one physician has been reluctant to use our service, so far. We believe this reaction was based on a preference for a clinic-based pain management service.

Resistance from nurses. Nurses in long-term care facilities are used to having nurse practitioners and physicians come in to consult. The resistance from nurses lies in the use of opiates. Some nurses are very reluctant to use opiates, even though they are essential to managing cancer pain at the end of life. We try to overcome that resistance through education, and by showing them the improvement in patients' comfort. Sometimes, we win them over, and sometimes not. I think it's just fear, and a lack of knowledge. And sometimes that fear means that they will never refer patients to you, because they see that you do use opiates for pain management and dyspnea.

Do you ever recommend to nursing homes how they can address some of the challenges they're facing?

We talk about providing in-services, although I don't think that education and in-services are the only way to do it. Sometimes, the way to do it is modeling the type of care and continually going one-on-one with the person, "Why am I making this recommendation? What's the reasoning behind it?" and then reviewing, saying, "This is what we did, this is where we need to go."

Direct Patient Care, Modeling, and Consultation

How do you work with the patient and family?

We don't become the patient's primary provider. But with the authorization of the primary care provider at the nursing home Bonnie and I will have family meetings, discuss pain management, especially the types of medications and their side effects. If the family is not available to attend a meeting and the patient is not communicative, we telephone the families and get additional information that can help. When patients are communicative we encourage staff to talk with the patient and family about their history, to elicit stories, and to try to connect with the family in that way. Attending to the psychosocial dimensions of the patient and family's experience can improve a patient's level of comfort.

Do you ever get involved with advance care planning or encouraging the family to do that?

We do. Often, we'll have family meetings, which we'll attend at the facility with the social worker and at times the physician. Sometimes we will speak with the family independently about the disease trajectory. We try to understand the family's beliefs about the patient's values and goals for treatment when the patient cannot express these for him or herself.

How do you help the nursing home staff provide support to the family as a patient starts to decline?

For instance, just this past week, a 90-year-old patient developed a partial obstruction. She was having problems with nausea and vomiting and had a bad cough. Her family could clearly see that she was declining. She had been diagnosed with end-stage disease just two weeks before, and the family was grappling to come to terms with everything. I conducted three family meetings as well as talking with staff, and a social worker of the facility who was also meeting with the family. The family contacted their priest who visited with their mother. The patient and family clarified the goals of care and made a decision to discontinue all aggressive treatment and opt for comfort measures. Initially, the nurses were not sure that they could keep the patient comfortable without aggressive treatment. Once the plan and the comfort measures were described they realized that this care would improve the patient's quality of life. As the discussion developed the family choose to shift their mother to the Medicare Hospice Benefit and discontinue skilled nursing care. So, our work is a combination of our talking directly with families and consulting with the nursing home staff, who then provide that assistance and support.

Evaluating Success

How do you know you are being successful at what you do?

I know we're being successful in making some inroads with pain management. We haven't done a formal evaluation, which will be important to do. We do get regular feedback, however from nursing home staff such as: "We know that this person is comfortable," "We have to have you in here because we know you'll help this person to be more comfortable," or "We know that you can do it, and we know that right now, the primary provider is not quite doing it."

We consider the number of referrals we receive, the range of physicians who refer to us, and the positive response we observe in patients as indicators of success.

Are you using any formal evaluation tools, such as a pain audit?

That's one of the areas that we're looking to develop. We are in the process of planning a chart-based audit. There is valuable information that we collect in the record that can help to look at the success rate towards comfort, and also provide information on how we can improve. It is our hope to move onto a computer-based record system, which will provide easy access to much of the data.

Another way we plan to assess our impact is to send out a satisfaction survey to the staff at different facilities. Initially, we are interested in staff satisfaction. And then, the next step would be to measure family satisfaction. One thing I would be interested to know is whether families are aware that our consultation service is a separate from the nursing home services.

Replicability of the Program

How replicable do you think your project is?

I think this could definitely be done other places. One of the things that must be considered is what the scope of practice is for the nurse practitioner in a particular state. Within Rhode Island, we do have a very broad scope of practice. We can work independently, as long as we're working in collaboration with another health care provider. Each insurance carrier has criteria for reimbursement for the service, so one would need to research that, as well.

Whoever is putting a program like ours together will have to be really committed to improving end-of-life care. At HHCRI, the leadership is mission-driven. They did not say, "You'll only see this patient, do this consult service, if you know you can get reimbursed." That wasn't the motive here. Certainly we wanted to break even on this service, but the important thing was to look at how we could improve end-of-life care and in some cases, get patients on hospice services in a more timely fashion, before they are in their final days of life.

How would you advise others who want to do this?

I would advise others to be flexible with each long-term care facility, and to try to be non-judgmental. See where they are at, see where they could implement some type of change. Do not go in saying, "Absolutely, this is the way you have to do it, this is the care you have to give," but try to see it as an incremental process. If you can make one little bit of change, then each time you can make more and more changes in how the care will be provided. You have to be really patient and recognize that it may be frustrating to work with an ever changing nursing home staff, but really understand that this nursing staff is already stretched to the gills. We're here to help them provide better care, and I think they really welcome it, but sometimes they're just so stretched they may resist suggestions for change.

Next frontier: Extending Palliative Care to Assisted Living Facilities

For us, this program is really in its infancy, and from what we know, there are many people who die of chronic illness whom we are not yet serving, and could serve. We've gotten the referrals and so we've been able to add another staff person. I think that we're going to be able to continue to add services in different areas, whether it is in long-term care or in assisted living facilities. In about six months, we anticipate that we will begin to provide palliative care consult services in assisted living facilities in this state. In an assisted living environment, we'll probably encounter a whole different set of needs and barriers, because those facilities don't have nurses that are always available to the patients, even to give opiates. Close family may not be available, in the way they sometimes are at home. There's not a lot of supervision in an assisted living setting, either. So, once we start in that area, I'm sure that we'll see more barriers and need to get even more creative in overcoming them.

References:

1. See Facts on Dying and Center for Gerontology and Health Services Research www.chcr.brown.edu/dying/rhode_island_statistics.htm.
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2. ELNEC is a comprehensive, national education project to improve end-of-life care by nurses. ELNEC is a partnership of the American Association of Colleges of Nursing (AACN) and the Los Angeles-based City of Hope Cancer Center, supported by The Robert Wood Johnson Foundation. Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care and other publications and resources can be found at its website: www.aacn.nche.edu/elnec. [Return to Promising Practice]

3. Ferrell BR, Coyle N, (eds.). Textbook of Palliative Nursing. New York: Oxford University Press, 2001. [Return to Promising Practice]

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