Innovations in End-of-Life Care
The Harlem Palliative Care Network
The Harlem Palliative Care Network (HPCN) is a collaborative project among three well-established New York City health care institutions: Memorial Sloan-Kettering Cancer Center, North General Hospital, a community hospital in Harlem, and the Visiting Nurse Service of New York. One of six community-based palliative care programs funded through a grant from the United Hospital Fund of New York, the Harlem Palliative Care Network provides comprehensive and culturally sensitive palliative care services to African Americans and other racial minorities, populations which historically have had difficulty accessing medical services at every stage of life. In this interview, Dr. Richard Payne, who is Director of the Pain and Palliative Care Service at Memorial Sloan-Kettering Cancer Center, and Terrie Reid Payne, MA, formerly Program Director of HPCN and now a consultant to the project, describe the project's goals, how it was developed and operates, and how they hope it will be sustained. The interview was conducted by Innovations Associate Editor Karen S. Heller. [Citation: Payne R, Payne TR, Heller KS. The Harlem Palliative Care Network: An interview with Richard Payne and Terrie Reid Payne. Innovations in End-of-Life Care, 2001;3(5), www.edc.org/lastacts]
Background and Goals
Please tell us how you conceived of the idea for the Harlem Palliative Care Network and what your goals are for this initiative.
DR. RICHARD PAYNE: We wanted to build a pain and palliative care program that would serve the needs of the minority and medically underserved community in Harlem. To do this effectively, we thought the program really needed to come from the community and be of the community, because it wasn't necessarily the case that "if you build it, they will come." So, our first thoughts were that we wanted something that was community-based.
Then, when the United Hospital Fund issued an RFA for community-oriented palliative care programs, we had the opportunity to use the grant funding as a vehicle to get the network started. The idea was, first, to establish a base of expertise in palliative medicine at North General Hospital, which is in the community; and second, to network and liaison with community organizations in Harlem—churches, social groups, nursing homes—in order to do two things: one, to help us identify patients and families with advanced illnesses, who could benefit from palliative interventions, particularly before they were at death's door; and two, to provide services of a non-medical nature that are definitely needed to support patients and families when they are facing life-threatening illnesses.
So, we have been developing a consortium of community network providers who help us find people who could benefit from palliative care, particularly early in the course of a disease trajectory (rather than as people were presenting to emergency rooms and to the hospital in an acute health crisis). This consortium also provides an allied and associated system of community social support, which could work in concert with the medical system at North General Hospital and other medical facilities to support terminally ill patients in this community.
Our specific objectives were:
Generating Community Support
TERRIE REID PAYNE: One of the first things we had to do in order to achieve our two goals of establishing a base of expertise at North General and building this community network, was to educate the community. In the summer of 2000, we did that in a number of ways, in particular by developing a HPCN Community Advisory Board (CAB) composed of twelve people, who were high-level stakeholders in Central and East Harlem and who were interested in the concept of providing community-based palliative care. We had representatives from a range of settings, including the Breast Examination Center of Harlem, a couple of churches, an AIDS consortium, well-established community service organizations, pharmacies, etc. North General Hospital has been serving Central and East Harlem for 20 years, and they have a good relationship with a number of health and social service agencies, so they suggested who the key members of a Community Advisory Board would be.
At first, we did an education program with the CAB members, and then, later in the summer and fall, we went out and presented the program to the community organizations that the advisory board suggested we contact. We went out and spoke with community-based agency directors about what palliative care is, the differences between palliative care and hospice care, and what this new project in Harlem was about.
How does the advisory board function?
TRP: The board meets quarterly. During the development of the program, they reviewed all of our informational brochures and intake forms. Now, we keep them informed about our progress, invite them to any palliative care educational forums, meetings, community outreach, or other activities that we're doing.
In general, how do you get patient referrals?
TRP: Some patients are referred as they're about to be discharged from inpatient care in the hospital. Some have been referred by a couple of our community advisory board members and some by community doctors, who have come to some of our meetings or whom we've contacted one-on-one. Most have come from North General Hospital clinics. Anyone can refer a patient to HPCN.
How many people does HPCN now serve?
TRP: As of August 1, 2001, we have had 69 referrals and currently have 50 active patients in the program. About eight of the people whom we have served, have died.
On average, how long are people in your program?
RP: Some people have been in the program for several months. Most of those who have died so far were referred relatively late in their illness and died within a week or two of referral.
TRP: Some of our first referrals are still in the program. As we get out in the community more, do more education, and recruit people closer to the time of diagnosis, we are following patients for a longer period of time. However, the program will probably continue to include people who will die within a short period of time.
Are you recruiting as many patients as you would like?
RP: In terms of the number, yes, but I would like to see more non-cancer referrals. So, we are now targeting the AIDS clinical programs in Harlem, and some of the general internal medicine programs and community centers.
In our grant proposal to the United Hospital Fund (UHF), we said that we would target five major populations: people with cancer, HIV/AIDS, congestive heart failure (CHF), end stage renal disease (ESRD), and chronic obstructive pulmonary disease (COPD). Most of the referrals to date have been cancer patients. We've had referrals of patients suffering from each of these five diseases, but of the 50 or so active patients, more than two-thirds have cancer.
What accounts for that?
RP: There may be a cancer bias in recruitment, because this program really grew out of the partnership between Memorial Sloan-Kettering Cancer Center and North General Hospital. Moreover, the staff members in the institution who have had the biggest buy-in so far have been on the oncology and pain and palliative care services; the latter service began at North General in June 2000. HPCN staff members’ offices are located on the same floor as the oncology and pain and palliative care services. In addition, I think that the community still tends to think of hospice and end-of-life care as a cancer issue more than with these other conditions. As the program matures, and as we make more inroads into other clinical sites serving other patient populations, I think that we'll get more referrals of patients with non-cancer diagnoses.
How is the project staffed?
RP: Right now, our UHF grant pays for two people: a project director and secretary. Initially, the project director was Terrie Payne, but now a social worker named Liz Alvarado has been hired to replace Terrie. The Visiting Nurse Service of New York contributed an advanced practice nurse to serve as clinical coordinator. This position could continue on beyond the grant if HPCN can remain a financially viable proposition. We think that this clinical team offers a good combination of skills: a social worker working together with a nurse to find cases and do the service planning for patients, and the nurse providing the clinical expertise to link patients with medical services at North General and in the community. A small percentage of my time is paid for, to allow me to conduct educational programs for North General staff and the community.
How many service providers are currently involved in the Harlem Palliative Care Network?
TRP: We have 167 provider agencies, but we probably haven't used every one of those. Some of them are occasional partners, who will provide a service if we call upon them. They have bought into the idea; their staff members have come to some of the evening community education and interaction sessions that we have held. But others are day-to-day partners, providing services that we use more or less consistently.
We sometimes develop relationships with community providers not yet enrolled as a provider member in HPCN when we find a patient with a particular need. In such cases, we will recruit the providers, and actually bring them into HPCN.
Obtaining "Buy-in" from the Partner Institutions
How did you go about enlisting buy-in from the various actors involved in the project?
RP: The Harlem Palliative Care Network is part of a series of collaborative programs between Memorial Sloan-Kettering Cancer Center and North General Hospital, and also a series of programs that reflect my current research interests in developing systems of care for minority communities.
Even prior to getting the UHF grant to establish the network, Memorial Sloan-Kettering developed a collaboration with North General Hospital's Oncology Program, to provide supplemental training in palliative medicine to the attending medical oncologist there. He visited here at Sloan-Kettering, rounded with us, went to clinic with me, and attended some palliative medical conferences. So, he was committed to the concept of palliative care, even before we started this program.
We then trained a nurse practitioner in palliative medicine. We selected a Latino nurse practitioner, who came to Sloan-Kettering, spent six months working with us intensively on our palliative care program, and then went back to North General and started working with the medical oncologist whom we had trained. So, because our expertise is in cancer, our training programs initially targeted the oncology people.
Now, we have done supplemental training for two AIDS nurse practitioners, and we do ongoing training with the internal medicine house staff at North General. In fact, over the course of a year, we systematically go through the Education for Physicians on End-of-Life Care (EPEC) curriculum1with the internal medicine trainees. I think that because we focused initially on training cancer specialists, we see that reflected in patient referrals thus far.
Did you have to get high-level support at Memorial as well as at North General to arrange for this kind of collaboration?
RP: Yes. In fact, I think doing that has really made this network happen. When we proposed the initiative, Dr. Harold Freeman, a major figure in the cancer world and an expert on cancer related to health disparities of minority populations, was the CEO at North General Hospital. He was a colleague and friend of Dr. Harold Varmus, then head of the National Institutes of Health. Thus, when Dr. Varmus left the NIH to become CEO of Memorial Sloan-Kettering in January 2000, there was a professional and personal connection between the heads of the two hospitals. I had a long-standing relationship with Dr. Freeman, even back when I was in Houston. So, as head of the Pain and Palliative Care Service at Memorial Sloan-Kettering, I was able to leverage my friendship with Dr. Freeman and his position at North General to convince Dr. Varmus that it was in Sloan-Kettering's overall programmatic interest and within their mission in New York City to be involved in the developing cancer center and programs in palliative care and pain management at North General. HPCN grew out of collaborative relationships that existed between the three institutions (Memorial Sloan-Kettering, North General, and The Visiting Nurse Service of New York). HPCN was a good match for our respective institutions’ goals for care in the Harlem community.
I received my basic postgraduate residency training in neurology at New York Hospital-Cornell Medical Center, which involved clinical rotations at Memorial Sloan-Kettering Cancer Center. During my residency training, I met future mentors and role models—Drs. Kathleen Foley and Raymond Houde—for my career in pain management and research and palliative care. I came back to Memorial Sloan-Kettering Cancer Center to direct the Pain and Palliative Care Service in 1998. I share a vision with other senior leadership at Memorial Sloan-Kettering that a great cancer center must provide excellence in cancer care, which includes pain management and palliative care, by providing improved access to cancer screening and treatments for all New Yorkers, especially for citizens residing in communities like Harlem.
The idea of HPCN originated from the vision of providing improved access to pain management and palliative care for all New Yorkers. Dr. Harold Freeman and I began collaborative programs in palliative care and pain management even before a formal collaboration was established between Memorial Sloan-Kettering Cancer Center and North General Hospital.
Without the sort of high-level commitment I've just described, it would be very difficult to undertake this program, because even though we've got funded grant activity, there is still in-kind support of various types which Memorial Sloan-Kettering, North General Hospital and Visiting Nurse Service have had to contribute.
TRP: Our third partner in HPCN is the Visiting Nurse Service of New York (VNSNY). The director, Carol Raphael, PhD, has bought into the concept of palliative care in a home-care setting. VNSNY has also contributed a lot of in-kind service above and beyond what the grant provided to us.
RP: It's been a very nice merger of partners and of institutional expertise in that respect. I think all three institutions see this as a win-win, and each institution has something unique it can bring to the table.
TRP: It has been a learning process for these institutions to be partners. Each partner has taken on different roles: Memorial Sloan-Kettering does a lot of the training; VNSNY is doing a lot of the direct supervision and home care referrals; North General is where HPCN sits, and they provide a lot of the community expertise and in-kind services in their own building.
Financing and In-Kind Support
In terms of in-kind support, what kinds of things does each institution contribute?
RP: As Terrie says, Memorial Sloan-Kettering trains professional staff at North General, as well as community physicians and health care providers; and not all our time to do that training is reimbursed, so that's in-kind support. My time on the grant is 5 percent, but I spend probably 10 percent of my time on the project. North General contributes space, and I'm sure they're contributing more space than what is covered by the indirect costs on the grant. VNSNY has contributed a lot of their expertise in systems development, database development, and supervision of nursing.
What does your grant funding pay for? How are services not funded by the grant paid for?
RP: As I mentioned, the two entirely grant-funded positions are the project director and secretary. The community provider services are all provided essentially on a volunteer basis. Many of the community-based social service agencies are providing their services to the patients and families at either no cost or low cost.
TRP: They are able to do this for no cost or low cost because we're just giving them another stream of people who are using the usual services that these agencies provide and for which they may get reimbursed. If a church has a friendly visiting service or food pantry, that's what we use in the church. If we found we needed something else down the road, like a bereavement support group, we would try to see if we could help a community agency get that started. But we are not generally asking them to do anything they are not already providing to people in the community.
When you look down the road, though, do you think the agencies are going to be able to keep that service up in the future? Have you thought about ways to reimburse those services?
RP: I think the community providers can keep that up. The issue will be maintaining the HPCN infrastructure (which consists of the two positions currently funded by the grant and the nurse position that VNSNY is contributing) to coordinate the care and the referrals. If we can show that there are enough collateral referrals to home care and to hospital-based services, that would justify North General Hospital and the VNS continuing to fund these positions and they will be kept on after the grant ends in March 2002. That's what we are trying to show now by looking at referral patterns and outcomes.
Nuts and Bolts of the Program
How does the program operate?
TRP: Within 24 hours after a patient is referred to the program, Eno Onda, an advanced practice nurse who is the HPCN clinical coordinator based at North General Hospital, contacts the referrer or the patient themselves. She does some assessment in person or over the phone; often she arranges to meet the patient in the hospital or at a clinic appointment. On a couple of occasions, she has gone to the person's home, but usually the person comes to the hospital. She meets them in the inpatient or outpatient service and then spends an hour doing a more complete assessment of their current status and their medical and social service needs.
RP: HPCN has developed a referral form and assessment checklist that help her identify the medical, social, housing, transportation, spiritual, and legal needs that the patient may have or need to deal with. When Terrie was the project director, she and Eno recruited community-based service providers who can serve many of these patient needs. Eno then connects the patient to support services in the community and coordinates with various systems of medical and supportive care for the patient to ensure integration and continuity of care.
TRP: Once a week, we present the cases we are following in a team setting. Representatives of the Pain and Palliative Care Service from Memorial Sloan-Kettering, HPCN staff, and representatives from North General Hospital's departments of social work, pastoral care, rehabilitation and psychiatry all come to this meeting and review cases so that HPCN staff members can get a different perspective on what skills and services these patients might need. We review what may be working or not working, and what interventions we may need to change or add. These meetings have been very helpful to the clinical coordinator and to the patients.
Can you provide some examples of how HCPN identifies and meets patients’ needs?
TRP: In a couple of the cases I'm thinking about, the patients needed a lot of family intervention. In one case, the man was alone because the family had withdrawn from him, so the nurse did some family networking to get them to start talking to each other again. As a result, when this man later had surgery, the family was there. In addition, VNSNY brought in home care services for him. This patient actually wrote us a letter saying what a difference having somebody to intervene for him had made.
In another case, a Latino woman, who has subsequently died, took a tremendous amount of the clinical coordinator's time during a very intense period near her death. She wanted to come to Memorial for a second opinion, so we arranged for that appointment through North General's inpatient services. In this way, we were able to support the decision that she and her family had made to seek a second opinion, even though it confirmed that nothing curative could be done for her. She ended up going to a nursing home, and then back into the hospital, where she died.
HPCN's clinical coordinator assisted her family in several ways. Although family members had lost touch with their pastor and their church, the clinical coordinator was able to get them back together. When the patient died, the clergy was there supporting the family. The woman had two teenage children, but was separated from their father. After the mother's death, there were some child care issues our clinical coordinator helped to resolve, as well. That one case took many hours of time, but I think it was time well spent and the family is very grateful.
Does VNS do most of the home-hospice care in New York, or are there other groups as well?
RP: No. There are several programs. Calvary Hospital is a large program in the Bronx and VNSNY has a small hospice program. As it pertains to Harlem, we would certainly look at expanding the VNSNY program to really specialize in palliative and hospice care for a minority community.
I would have to say there are limitations in currently available hospice programs in Manhattan. This situation provides an opportunity as well. For communities like Harlem, it may be that hospital palliative services are going to provide a greater portion of services than hospice because the patients' medical needs are so great and their families and social supports are often themselves strained or limited. However, that is a hypothesis I think we need to test.
TRP: Of the 8 or 10 patients in our program who have died, almost all of them have died in the hospital. I don't think any of them actually have died at home. There have not been a lot of viable options to hospital end-of-life care, so that's something we will take a look at.
What kind of bereavement support do you provide to a family after the patient's death?
TRP: During the grant period, we are doing a series of things. We send a condolence card, and a little packet of rosemary (which symbolizes remembrance) that can be saved as a memento or taken to the gravesite; then we follow up with literature to support the loved ones. We refer them to community resources (which are limited at this point), North General pastoral care and the VNS bereavement support group.
We're about to start a bereavement support group at North General Hospital with support from VNS and Liz Alvarado. I am also developing an end-of-life survey instrument, adapting from instruments already in the field. I will be following up with patients’ families after death to try to determine how satisfied the families were with the care HPCN provided to their loved ones.
RP: We're also doing something that I think is even more far-reaching, and very exciting. This is not a formal part of the Harlem Palliative Care Network, but it's connected. We've gotten funding from another source to develop a palliative care curriculum for pastors serving the Harlem community. The course will require a commitment of four hours per week over the course of twelve weeks. In addition, there will be an opportunity for pastors to come to North General and round with the Pain and Palliative Care clinical team. Formal bereavement training will be given, and in fact, the project director for this particular project is LaVone Hazell, an African American woman who is a bereavement counselor and a former funeral director. So, we're very excited about that project.
Universal and Distinct Needs
Are there unique needs that African Americans and other minorities have that you are trying to address through this initiative?
RP: Fundamentally, everyone near the end of life has the same needs. We all need to be cared for in a competent way, including management of pain and other symptoms. We also want to have our personal and spiritual values respected, within a system that provides expertise to address medical and psychosocial needs. Everyone wants a system that respects continuity of care and does not abandon the patient and family.
Patients from minority communities with insufficient access to full medical care often misinterpret discussions about the goals of care for someone who is terminally ill. Individuals from these minority groups frequently interpret these discussions in the context of not having had access to full medical care, and consequently see these discussions as another attempt by the system to deny them care. The issues that arise with members of minority populations are often exactly the opposite of what the SUPPORT study found2 and what I see at a place like Memorial Sloan-Kettering, where families are saying, "Enough, enough, enough. Why are you doing all of this?" By contrast, people from poorer and medically underserved communities generally feel that once they get into the system, they want as much care given as possible. Of course, there are individual differences, but speaking generally, that wish for care is a major issue.
The second issue with African Americans and other racial minorities who have experienced discrimination relates to the question of trust. How much can you trust that these institutions, which historically were not always user-friendly toward you, as individuals or as members of a group, are actually committed to working in your best interest? Because of that historically rooted mistrust, when you're told by the social worker or by the patient representative for the hospital that it's time to think about hospice care, you are likely to think, "Well, are you just wanting to kick me out of the hospital because you really don't want me here, or is hospice really my best option?"
It's also the case that if you have a terminal form of cancer, and you're an African American or Latino member of a medically underserved and poor community, and you get into a big institution like Memorial Sloan-Kettering (which I am using as an example just because I'm here), you might wonder: "Where are the black doctors?" "Where are the Latino doctors, who might have a better feel for some of my cultural issues?" "Can I talk to somebody like that?" Often they are not available. When I was at MD Anderson Cancer Center in Houston, for example, African American pastors told me, "If this institution is so committed to working now with our community, why aren't they more committed to hiring African American physicians on the staff?"
Have you encountered any resistance from community-based physicians with regard to providing palliative care earlier in the disease trajectory
RP: No, because I never present this as an either-or situation. I say up front, "Usually in communities like ours, the challenge is to get our foot in the door." We're not saying that providing palliative care services is in lieu of getting your foot in the door of the system. We frame it as an issue of the quality of medical care that you have at a particular stage of disease. That's how I think about palliative care, and that's how I talk about it. So, I think that has really diffused a lot of the concern.
Ensuring Continuity of Care
Because you are coordinating services across a variety of community agencies and health care providers, how do you maintain consistency and continuity in the goals of care and services for any particular patient and family? Do you ever find that there are problems in coordination or continuity of services, and if so, how do you deal with them?
RP: Certainly, this is a concern and we have tried to deal with it in several ways. VNSNY has been quite helpful in this effort, because one of their major organizational challenges as a home care service provider is to coordinate services and provide continuity of care for people with a variety of conditions who live in the community. In addition, the major responsibility of the clinical coordinator in the HPCN program is to keep track of people by doing continuous reassessments over time, to try to assure that their changing needs are being identified and met.
Another way to ensure continuity is through what I call "network maintenance." We really haven't done as good a job at this as we need to, but in the future we have plans to provide educational activities for HPCN providers, so that all of the providers would be brought together on an evening, say, at North General Hospital. We'd have a basic talk on palliative medicine, what the overall goals are, and give people an idea of how they're all contributing to meeting these goals. This whole issue of network maintenance and trying to assure that each community provider is providing the highest quality of service is a challenge.
Assessing Quality of Care
Have you tried to evaluate the quality of care the agencies in your network are providing?
RP: We're trying to deal only with agencies that have been around for a while in the community. When they come on board as community providers, we send them a letter outlining our expectations of what they can provide. But frankly, we really haven't figured out a way, or if it's even appropriate or proper, for us to provide some measure of the quality of services they provide. We do this indirectly, by reevaluating each patient in the program recurrently, and if their needs are not being met by a given agency or provider, then they are referred elsewhere.
TRP: Every 60 days we reassess a patient's plan of care, and review it with the patient's primary care physician. If the primary care physician is still happy with the kind of care that we've been providing, and if we are meeting the patients' needs, we consider that one indicator of quality. Although we have discussed whether we want to credential the agencies or providers in HPCN, we are concerned about how off-putting that might be, for example, to a community church that may be providing a food pantry. What would that mean to them? So, monitoring or evaluating the quality of care provided by agencies in the network remains a challenge.
Barriers to Providing Effective, High Quality Palliative Care for Minorities
In the course of starting up or conducting the program, what are the major barriers, if any, you have encountered? How have you overcome them?
TRP: First, one barrier is simply time. I think our partners —the people who are sitting at the table with us from VNSNY, North General, and Memorial—are very busy. They have a lot of other commitments, speaking engagements, countless clinical and administrative responsibilities, so that has been a challenge in terms of having them focus on this program.
Second, when we started the program, we expected that people of color would not want to talk about death and dying. We are not finding that tendency to the extent that we had anticipated. We're finding that advance care planning was not being done or people did not understand why it was important to address it. But Eno Onda, our clinical coordinator, has been very successful in getting people to sit down and look at how they plan for their care as their needs change.
RP: Eno comes from Africa and I think that one of the reasons she has been successful with these advance care planning discussions with African Americans is because she comes to them as another minority individual, who can pick up on some of the cultural issues that people bring to the table.
TRP: Through repeated one-on-one dialogues in meetings with patients and their family members over many weeks, we have found that almost all of the patients in our program have either signed advance directive documents or had some discussion with their family members or with the clinical coordinator around advance care planning issues. That's one of the barriers that we expected to find, which has been easily overcome, because staff is paying attention to it.
Solutions: Ethnic and Racial Diversity of Staff
RP: Another barrier, related to our ability to penetrate into the Latino community, has been the absence of Latino staff. When Terrie stepped down as project director, one of our strategies in replacing her was to recruit a Latino health care provider, in this case a social worker, who could recruit Spanish-speaking network providers and do outreach and educational programs in Spanish for the Latino communities in New York City. Liz Alvarado, whom we hired as project director, is of Puerto Rican background and speaks Spanish.
One of our hypotheses here is that the ethnic and racial diversity of the health care providers really does make a difference in terms of acceptability of these programs to the various minority communities. We assumed that if the providers don't reflect in themselves the communities they serve, then members of these communities may have concerns at the outset about how sincere or how sensitive the health care system is going to be to their own needs and issues.
Ideally, we think anybody of any race can help someone if you relate to each other as a competent health professional and as a human being. However, I think it is naive not to acknowledge that the health care provider population should be representative of the people who comprise the communities they serve.
Does the diversity within minority communities play into these discussions or interactions? For example, are there any salient cultural differences between blacks of Caribbean or African American origin?
RP: Although there are cultural differences between French-speaking, Caribbean-born blacks and those originating from Africa, or African Americans born in the United States, as a generalization, I think there is less of a difference between black American ethnic groups than between blacks and Latinos, particularly regarding this language issue.
I don't feel as comfortable going to speak to community groups in the Latino community because I don't speak Spanish, and I think just having someone who can speak the language sends a signal. If you don't speak the language, even though you might be a very competent and caring health professional, there's still an issue for your audience.
TRP: For example, with some of the Latino families, we found that we've had to pull in other staff members to help Eno address some of their needs and cultural issues. We have brought in a male Latino nurse practitioner or a Latino social worker at North General Hospital. There are some things that Latino patients have shared with the Latino nurse practitioner, which they may have been more hesitant to share with Eno. It is important to recognize where those shortcomings are and to try to deal with them in a sensitive way, and get help when you need it. I think that's what she's been successful in doing.
RP: But I don't want to give you the impression that we're saying that every different ethnic group has to be represented in equal share in a palliative care referral. I do think, though, that if you're going to have a palliative care program that's going to serve minority communities, you have to have minorities represented on the health care team, and, hopefully, on the physician and nurse level, not just at the nurse's aide or outreach worker level.
What other kinds of issues have posed problems for you in developing and sustaining the HPCN? Are there any financial barriers, for example, in providing services to your patients?
RP: For the hospital, one of the financial barriers is that some of the patients whom we want to serve have no insurance. Furthermore, some are not even citizens of the US, so it's not possible for them to get coverage through New York State Medicaid or through Medicare, and that can be a significant barrier, both practically and ethically. How do you not provide services to people who need them in your community?
We are working with the Health Resources Services Administration (HRSA) to try to develop a project grant that would serve as a demonstration project for how we might do primary palliative care in primary health clinics, which would help serve some of these needs, but even HRSA has statutory limitations on funding projects that serve people who are not citizens of the US. So that's been an issue, because North General Hospital takes care of about 15 percent of the uninsured population of Harlem, and for a small community hospital, that's a huge financial burden.
What other obstacles have you encountered?
RP: Another issue is how can we best manage patients with chronic pain problems coexisting with substance abuse disorders who do not have life-threatening illnesses. Of course, some of these people also have HIV, a few have cancer, so there are life-threatening illnesses among these patients with chronic pain. It's not been a barrier, but it's been a challenge on the inpatient consultation service, which is a component of the Harlem Palliative Care Network.
The barriers to drug availability in an area with many poor, uninsured people, have been less problematic, only because we've been proactive in trying to deal with them. We have developed partnerships with community pharmacies near the hospital, and we have had at least one educational session with the pharmacists in the Harlem area, in which we talked about the study that was reported in the New England Journal last year4,5 To the extent that we can control access and direct patients to the pharmacies that we know have available stocks of medications, that hasn't been a barrier. Of course, we can't always do that.
Have you evaluated the program formally in any way?
RP: In the grant, we wrote that we would look at process measures and a few outcome measures. The process measures include how many people we got into the network, how many people were maintained in the network, how many patients were referred, etc. The outcome measures would relate to some simple quality-of-life measures, at baseline and at several months into the process. We're using the Missoula quality-of-life instrument as part of this.6 We don't have the data analyzed yet. We're not planning to do that until March 2002.
We submitted a proposal to a funding agency to do a formal process evaluation of this project, and although that wasn't funded, it led to the United Hospital Fund providing money to fund an outside evaluation of all of the projects they have funded. But in our own group's evaluation, we're looking at how many people we have reached through HPCN and relatively simple quality-of-life outcome issues.
TRP: Our preliminary findings are that once we attend to medical needs, our patients' primary needs are for social support, a visit from clergy or a neighbor, food, and needs related to improving and supporting family interactions as the disease progresses and the patient’s and family’s needs change.
What do you feel most satisfied that you've achieved so far in terms of the goals and objectives of the Harlem Palliative Care Network?
TRP: One of the goals that I think we are continuing to reach on a daily basis is in improving access to palliative care services, and improving the quality of life for patients who are seriously ill and dying, and their families. I think we are giving Central and East Harlem residents access to care that they would not have had if we had not had this program in place.
RP: We do have an objective that we have not achieved yet, and that is to establish an inpatient unit at North General Hospital, where we could admit patients who are acutely ill or who are actively dying. That unit would really function like an inpatient hospice unit, so we could even admit patients for respite care. There is space in the hospital to do this. There are fiscal issues about how we could renovate the space, and how we would fund the beds, but there's certainly a willingness in the hospital to look at this. We have not abandoned that goal and are brainstorming ways to develop a unit.
In terms of getting patient referrals, do you feel you are penetrating as deeply as you have wished into the community?
RP: Not at this point, but we are increasing our penetration. One of the other things that we're doing, which is not formally part of the Harlem Palliative Care Network, is that we've established what I call the Harlem Palliative Care Group, which is an informal health care provider network.
We received money from pharmaceutical companies to fund educational dinner sessions every two months in the Harlem community, where we discuss topics related to practical aspects of delivering palliative care. People from some of the other hospitals in Harlem, and some private practitioners attend these sessions, so that is one way we can increase our penetration, as it were, into the community. We've really only been taking patient referrals for nine months as of September 1, 2001. We wanted to begin slowly and be effective with the patients we were referred. Our hope is that this initial "success" will build credibility and help us determine where we might continue our outreach efforts for additional referrals. So, I think we are about where we should be. In fact, if we had twice as many referrals at this point, I'm not sure we could have handled them.
In the next six months, between now and the end of the grant period, we want to get at least another 50-100 patients into the system. One of our goals for this period is to increase referrals, and to determine if this is going to be economically viable as a source of home-care referrals for the VNS. We need to determine the most effective model for the delivery of community palliative care services—staffing, infrastructure, support, effective providers, gaps in services, effectiveness of linkages, and so forth.
What have you learned that you would like to tell others who might be contemplating undertaking a similar palliative care initiative for minority populations?
RP: We've learned a few things. One is that people will respond to a sincere effort to meet human needs. So, if you go to a community and you are really serious and sincere about involving them and getting their input into what kinds of services they need, and then deliver those services, people will respond, even in an area as seemingly sensitive as palliative and end-of-life care.
The second thing is that the needs of people are very broad. It's not just medical, though the medical issues are important. In order to truly meet the needs of people who are facing life-threatening illnesses and are dying, you need to provide the spiritual and social supports. And these are legitimate activities for a medically-oriented system to do.
The third thing is that it's possible for health care organizations with different missions to come together in a common interest and to produce real synergy of effort. By combining their efforts in this arena of palliative and end-of-life care, three long-established institutions in the New York area—a big, research-intensive academic cancer center such as Sloan-Kettering, a community hospital such as North General, and a home care agency such as The Visiting Nurse Service of New York—can find common ground to work together and to build a new synergistic program.
Is this unique collaboration itself one of the most innovative aspects of what you're doing?
RP: Yes, it is. One of the things that we're trying to evaluate is how belonging to this program changes the main partner institutions. I'm not sure how it has yet, but we shall see. For North General, I think there are lots of possible benefits. I think they may be able to attract different kinds of attending physicians to their hospital because of this association with Sloan-Kettering. I think it certainly facilitates the care of patients in their hospital, to have the VNSNY directly involved in this way.
For VNSNY, I'm not yet sure what the overall gain is, but participation in HPCN is facilitating referrals from Harlem for home care and hospice. It is also one of the first home care agencies, if not the first, to begin to examine the economic and programmatic issues of delivering palliative care services in a community setting like Harlem.
At Memorial Sloan-Kettering, it is certainly providing me with an opportunity, for example, to change the nature of the way I train all my fellows in our palliative care program. They are going to go to North General Hospital. They are going to be exposed to palliative care, pain management, and end-of-life issues in the Harlem community and they were never exposed to that before as part of our training program. And since we tend to train people who are going to be leaders in the field, I think that has a trickle-down effect. But I'm not sure how we quantify and measure that effect over the years.
TRP: We've been asked about how each of the partners has changed and had to make accommodations. I think we learn about the effects of participation bimonthly when representatives from the three partner institutions sit down at the table and talk about what the barriers have been and what we need to address next. I think the sizes and the missions of the organizations do not matter as much as the respect and the quality of communication that happens as you try to implement the program.
What advice would you offer others who may want to undertake a similar initiative in communities serving large minority populations? Is there anything you would have done differently?
RP: Well, I don't think we have all the answers. I think it is important to have community involvement and buy-in up front. An essential early step is to partner with opinion leaders in the community.
Then, inside your health care institution, you need to have a commitment from the highest levels to take on such a project. One thing you cannot do is go out there and then pull back because your boss says, "Well, there's too great a financial risk, or we don't want the hospital involved in this." This commitment is very important, because one of the issues within minority communities is that they're always seeing these half-hearted efforts by big institutions, coming in and promising a lot of things, and then pulling out. In sum, you have to be clear that there's a commitment from the highest levels in your own institution, and that there's credibility for the program by having community buy-in and representation early on.
TRP: I also think that it's key to partner with other institutions and organizations. Not necessarily to have three partners, as we do, but to have partners who respect each other, and who bring different skill sets and service components to the table, but are definitely equal partners in the relationship. I think that has made a big difference for us.
For example, Memorial Sloan-Kettering and VNSNY together could not have commanded attention in East Harlem. They needed North General Hospital, which is located in the community, has relationships there, and, which then advised us where to extend our outreach and that's where we've gone.
Have the partner organizations ever had any difficulties in working together toward your common goals?
RP: In terms of real substantive conflicts—at the moment, no. This is not really a competitive relationship, because each group really does bring something unique, and HPCN might not have happened without each partner.
The key question is whether provision of palliative care stays as a common goal for the three partners. At Memorial Sloan-Kettering, we've got a big stake in end-of-life care and palliative care. So, from our point of view, I see this kind of community network as remaining on the agenda.
What are the greatest challenges currently facing you?
RP: Sustaining the program, and as the program grows, if we are truly successful, we'll be enrolling more and more people earlier and earlier in the course of their illnesses, and we'll be encountering a greater percentage of people who lack very basic health insurance.
Then the question becomes ethical: How do you justify reaching out to bring people in, if you can't really provide services to them because they are uninsured? Fortunately, we haven't really run into that. It's a worry, however, because this becomes a greater and greater risk as we become better known and get more and more penetration in the community, and as we identify people earlier and earlier.
1. Education for Physicians on End-of-Life Care (EPEC). http://www.epec.net[Return to Featured Innovation]
2. SUPPORT. A controlled trial to improve care for seriously ill hospitalized patients. Journal of the American Medical Association. 1995;274 (20):1591-1598. [Return to Featured Innovation]
3. Payne R. At the end of life, color still divides. Washington Post, February 15, 2000.[Return to Featured Innovation]
4. Morrison RS, Wallenstein S, Natale DK, Senzel RS, Huang LL. "We don't carry that"Failure of pharmacies in predominately nonwhite neighborhoods to stock opioid analgesics. New England Journal of Medicine. 2000; 342 (14):1023-1026.[Return to Featured Innovation]
5. Freeman H, Payne R. Racial injustice in health care. New England Journal of Medicine. 2000;342(14):1045-1047. [Return to Featured Innovation]
6. Byock IR, Merriman MP. Measuring quality of life for patients with terminal illness: The Missoula-VITAS quality of life index. Palliative Medicine. 1998;12(4):231-244. [Return to Featured Innovation]
|Last Updated: September 25th, 2001|
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