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

Filling the Gaps in Service for Patients Who Need Supportive Care

An Interview with Martha Twaddle, MD, FACP, and
Mary Sheehan, RN, MSN, MBA

The American Hospital Association in conjunction with the American Medical Association, the American Association of Homes and Services for the Aging, and the National Hospice and Palliative Care Organization awarded The Palliative CareCenter & Hospice of the North Shore (PCCHNS) one of three 2001 Circle of Life Awards in recognition of their efforts to provide quality end-of-life care across a variety of settings. This program was also recognized recently in the Center to Advance Palliative Care and the National Hospice and Palliative Care Organization's jointly sponsored report to explore and describe the challenges to hospital-hospice collaboration.¹ That report describes the strengths and limits of the Medicare Hospice Benefit and offers nine short portraits of such collaborations, chosen for their diversity in the range of populations, services they offer, and ways of organizing these services, rather than as a list of best programs.² Expanding on its concise description of PCCHNS, Innovations explores the origins and rationales of the particular services PCCHNS offers as well as the barriers to providing this care, and the strategies these leaders have chosen for sustaining their multi-faceted program.

Martha Twaddle, medical director since 1989, and Mary Sheehan, vice president of clinical services, describe the distinct services these seven programs offer, the populations they serve, as well as how the programs work together to achieve more seamless care than is generally available as patients move across funding streams. In this interview with Anna L. Romer, EdD, these innovators focus on the central role of the palliative care consultation service for reaching patients early in their disease trajectory, as well as for providing important services to patients at home who do not qualify for other services, but clearly need access to palliative care expertise. [Citation: Twaddle M, Sheehan M, Romer AL. Filling the gaps in service for patients who need supportive care: An interview with Martha Twaddle and Mary Sheehan. Innovations in End-of-Life Care. 2002;4(1): www.edc.org/lastacts]

Origins and Evolution

Please tell us about your organization.

Martha Twaddle: Our organization was founded in 1978 by a group of local volunteers as the Hospice of the North Shore. Located in Evanston, Illinois, the hospice was organized to give people in their community the option of dying at home, free from pain, surrounded by family, with time to achieve a sense of closure and peace of mind, and to provide loved ones with emotional support as well.

The organization has undergone a dramatic evolution from its 1978 roots as a small volunteer-run hospice program serving a few patients a day, into the independent, community-based, nonprofit organization caring for more than 1,000 patients of all ages in its various programs each day. Now the Palliative CareCenter & Hospice of the North Shore, the organization has grown exponentially in size, stature, and in the scope of service we provide. In addition to more than 200 volunteers, we have a staff of 180, including physicians, social workers, therapists, nurses, and chaplains. We serve patients and family members from more than 100 neighborhoods and communities in northern Cook and Lake Counties.

What was the rationale for your expansion, and for your change of name to include both hospice and palliative care?

MT: The name changes have been an interesting journey, and I think they're reflective of what's happening, nationally. From the 1970s until the mid-1990s, our name had been Hospice of the North Shore. When I joined in 1989, we became a Medicare-certified hospice. In the mid 1990s, we called ourselves the Palliative Care Center, and had two sub-groups—home care and hospice.

At that time, a lot of people didn't understand what palliative care was. And there was a lot of confusion as to whether or not palliative care was simply substituting the 'P' word for the 'H' word. The Latin word, palliate, means literally to "cloak, cover, or protect." Palliative care seeks to alleviate physical and emotional pain and symptoms, provide spiritual support, and enhance quality of life at the end of life, without seeking to cure. After much discussion, we then went back to a name that included both concepts: Palliative CareCenter & Hospice of the North Shore. We chose that name so that hospice wasn't lost in the overall message, and to reflect that it is a key piece of our mission. I think, nationally, that's where the consensus is, as well.

The principles of palliative medicine are now being applied more broadly to meet the needs not just of the dying, but also of people challenged by other serious health conditions, chronic and debilitating illnesses, or who have a lengthy recovery period from an injury. Palliative care can begin as soon as the point of diagnosis of serious illness and take place simultaneously with curative treatment. Palliative care is the umbrella, and hospice is its crown jewel. It is in hospice that palliative medicine achieves its fullest expression in the form of compassionate, comforting, and supportive health care. You can't lose track of the value of hospice within the overall system.

Program Offerings, Funding, and Mission: A Complex Interaction

How have financing mechanisms affected your expansion into various domains of care?

Mary Sheehan: The first expansion we made was into home health, because we recognized that not all patients are going to get into hospice. At first we thought it would be an extension of hospice, and that it would include all dying patients who weren't ready for or didn't have the Medicare coverage for hospice. In very short order, we realized that the concept of palliative care can be applied in the context of home health care. So, our home health service is quite broad. It does have end-of-life care, but it also cares for orthopedic patients, wound care patients, and diabetic patients as other typical home health services do.

The home health services are paid for mostly through Medicare and private insurance. A small percentage of patients are covered for home health care through Medicaid, and another small percentage are private pay. Our distribution of payers is similar to any other home health service.

MT: Even when we are serving patients who are not at the end of life, our home health care still focuses on those who have a life-challenging diagnosis, such as a hip fracture or wound issues. We are not serving the newly diagnosed diabetic. The reason people are receiving home health care reflects their status and functional level. We are trying to interface with people early enough in the disease trajectory to provide a continuous support system throughout their illnesses.

What percentage of your entire patient census is on the Medicare Hospice Benefit?

MS: We have about 180–200 hospice patients, 50 home care patients, 180 ongoing patients in the palliative consult program, 175 medical home visit patients, 24 MediCaring patients, 66 patients in the home care assistants' program, and more than 230 patients in our community outreach program. In total, we touch the lives of about 1,000 people per day.

Is the Medicare Hospice Benefit still your most dependable source of income?

MS: Hospice is our primary focus and the largest part of our revenue, with private duty care as our second largest ongoing source of income.

Do these secure funding streams then allow you to make choices about what else you can afford to do?

MT: It's not our mentality to look at what the Medicare Hospice Benefit covers, and then see what else we can afford to do. Our modus operandi is to say, "Look, here's a need. How do we reach these people, and meet their need, and find out what's out there that can bridge the gap? Is it a physician visit? Is it a nurse practitioner visit? Is it home care? What is it that will help these folks?" And yes, the cash flow from hospice gives you the foundation, but alone, it's not enough to sustain the range of programs we offer, nor should it be.

An important tension in US health care today is between mission and the bottom line: how do you meet patients' needs when you also have to stay financially viable? If you meet every need, you probably won't be viable. How do you manage that tension?

MT: We don't decide what services to offer based on funding. We see a gap, develop a service, and then see where appropriate funding may come from. Of course, charitable giving is important, too. We seek support from foundations and individual giving to offset what we do in patient care and professional education, among other things.

Intensive Care for Hospice Patients

MS: Our next extension was our hospice inpatient unit, for acutely ill hospice patients. We've collaborated with two hospitals to provide the acute level of hospice care, which is reimbursed through the Medicare Hospice Benefit, Medicaid, or insurance. We call it an intensive care unit because it truly is for patients who need aggressive symptom management, pain management, or psychosocial support. Currently, we have a 15-bed unit on the campus of Rush North Shore Medical Center. We began our first inpatient hospice unit in collaboration with Evanston Hospital, which is part of the Evanston Northwestern Healthcare system. In 1999, they needed more space, so we had to relocate. In each location, we have leased space inside these facilities. So, it's our staffing, our standards of care, under our medical directorship in these units. We contract for the pharmacy and dietary services, and all other amenities.

MT: Typically, people are admitted to the inpatient units for symptom issues that can't be handled in the home, such as intractable pain, delirium, and malignant bowel obstructions.

MS: Patients in the inpatient hospice unit are enrolled in our hospice program. About one-third of them come from Rush North Shore, and probably more than a third come from the home or nursing home setting. A small fraction of the patients comes from other hospitals in the area, which is wonderful because we see ourselves as a community-based program. Our inpatient unit receives patients from Northwestern, University of Chicago, Lutheran General, and even hospitals out of state.

How many other hospice inpatient units are there in the Chicago area?

MS: There's one other that I know of: Alexian Brothers in Elk Grove Village, Illinois. Northwestern University Medical Center has a palliative care unit,³ which is distinct from a Medicare Hospice unit in that patients in that unit may be pursuing curative treatment as well as aggressive palliative care, and may not be using a "do not resuscitate" order. All the patients at our inpatient hospice unit are also receiving aggressive palliative care, but they are enrolled in hospice, sign DNRs, and are clearly seeking end-of-life care.

MT: In fact, we receive many transfers from Northwestern on a regular basis because their focus is pain and symptom control, not exclusively end-of-life care. When their patients go into hospice, Northwestern really can't keep them on their palliative care unit for an extended stay, so we may receive them in transfer.

Palliative Care Consultation

Please describe your palliative care consultation service.

MT: The consult service actually grew from the original unit at Evanston Hospital. The idea was to mimic the rehabilitation model: when folks are referred for rehab, the rehab people go to them, wherever they are—typically in a hospital, or possibly in a long-term care setting—and assess them there, and determine whether or not they'd be appropriate for inpatient rehab. So we mimic that model with our palliative care consult service, which served the inpatient unit at Evanston Hospital. So, when a consult came for hospice, the consult service went out to do the assessment, and determined whether or not the patient should be on the inpatient unit, or how they would be better served. That consult service expanded to include people who weren't necessarily going to go into hospice, but who had symptom issues that needed to be addressed, and we supplied a holistic assessment of their needs and goals of care.

So, the palliative care consultation service emerged from the consults provided by staff members who were working on the inpatient hospice unit?

MT: Right. The inpatient hospice medical director became the palliative medicine consulting physician. It was a physician/nurse team, which sometimes included a social worker from the inpatient unit, but more often, the consult team collaborated with the social worker already participating in the care of the patient, wherever that patient was.

What triggered this consultation?

MT: The original consultations were triggered by hospice referrals. But, then the trigger became patient need for symptom management, whole-person assessment, discussion of the goals of care, or to diffuse the tensions around discussing the patient's lack of response to current treatment modalities and the need to shift gears.

Whose perception of that need was it? Was it the family's perception? Were families calling you for patient care consults? Or was it the other physicians who knew about you?

MT: All of the above. A lot of times the nurses on other units were saying to the doctor, "You know, we need to get palliative care over here."

MS: The nurses were getting frustrated in their care of the patient and they yelled to us for help, because we were a presence at these hospitals. In the hallway, they'd sometimes grab one of us and ask us about a case. We then learned to say to them, "Ask for a consult." In that way, we could be more formal in our involvement.

MT: Consultation means you are providing information to a doctor. You are giving an opinion, and facilitating care. So you're not replacing the physician, you are augmenting that physician's care of the patient. You provide a formal consultation and you may end up co-managing a patient. Many times you direct symptom management, or help the physician facilitate end-of-life care, because some physicians are not comfortable dealing with dying patients. In these cases, they sometimes sign off the care of the patient to the palliative care physician.

Do you then track what happens after your consultation?

MT: In our first unit at Evanston Hospital, we tracked who went where for a period of time. We had a small study that looked at the average pain score at the time of consultation, and the average pain score 24 hours later. The results were phenomenal, in that we found consultation led to much improved pain scores.

Can you explain the expansion from consulting within the hospital to consulting to other locations?

MS: Actually, it started because we were tracking our referrals in the admissions office. We were getting a large number of calls from patients, families, and physicians that were ambiguous in nature. A patient called because he had pain. Or the family was bringing Mom up from Florida, because she was in pain. Or they needed help deciding what their options were. They needed things that didn't quite fit into hospice or home health services.

MT: Interestingly, the palliative care consultation service sometimes serves those people who don't (and may never) qualify for the home health or hospice service. They don't have a need for skilled care, for example. They need care in the home, they're too frail to get to an ambulatory care setting, and they have significant symptom issues, but they don't qualify as needing skilled nursing care. So, the service is definitely filling a gap.

MS: In 1999, we decided to hire a physician to do outpatient consults. The physician we hired did not have a practice, but had an interest in palliative care, and had trained with Martha. We hired her for 20 hours per week to do outpatient consults for home patients and/or nursing home patients. So, these were not necessarily patients who were in hospice or in any of our programs. First, we notified the patient's physician and asked whether our physician could assess the patient.

Who would do the consultation, just the doctor or the doctor with a nurse, as a team?

MT: It depends on the needs of the patients as to the configuration of the staff used for the consultation. We evaluate each case individually and then determine whether it is feasible to send both the physician and the nurse, or a nurse practitioner and a nurse. Sometimes, logistically it is not feasible to send both together, but each may visit the patient separately at different times and make the assessment together back at the office.

We use an interdisciplinary team approach for our palliative care consultations. Sometimes the consultation is done by a nurse, or by the physician and the nurse together, or by the nurse practitioner and the nurse. Because we are so busy, we find that we are unable to visit the patients as an entire team. That is why we sit down back at the office as a team, which also includes a social worker, and go through our cases together.

So, for example, Mrs. Jones' daughter calls you and expresses some need on behalf of her mother, who is not under your care as a hospice or home health patient. So, your doctor calls Mrs. Jones's doctor, gets permission to go on a consult, goes to her home, and then what happens?

MT: Our physician does the consultation, and then calls or sends a report to Mrs. Jones' doctor by fax, to say, "This is what I found and this is what I recommend." Frequently, the doctor is uncovering symptom management issues; a lot of times it has to do with pain. And then, over the course of weeks and months, our physician may talk more and more with Mrs. Jones' physician about the goals of care of the patient and family. Mrs. Jones may have made clear to our physician that she is interested now in more supportive care, and Mrs. Jones may then choose to enter one of our other programs.

So, ideally, you establish some sort of the relationship with the existing physician?

MT: Absolutely.

What has your experience with that been?

MT: Overwhelmingly positive. I know of only one physician in the three years we've been doing this who said, "No, I don't want you to consult on my patient." That's it. Most physicians are tremendously appreciative because these are the patients that call them, at least several times a week, and who can't come into the office. The doctor feels frustrated because he or she is treating these patients over the phone, and these patients have huge needs. So, we facilitate the care of this patient when we go to the home and do an assessment. We provide the primary physician with information in a concise report couched in medical terminology. The primary physician gets kudos from the family for facilitating this care, and the phone calls to the primary physician drop off. Everyone is happier because of the intervention, in general.

MS: It's win/win.

How many of these home visits are you doing per week or per month?

MS: It's been going up over time. Currently we have about 180 ongoing patients in our palliative care consultation program, which grew on a consistent basis during 2001.

Usually home visits are not considered an effective use of physician time. How are you succeeding here, where others have failed?

MT: When I came on full-time in palliative care in August 2001, I tried to formalize the structure of the consult service, and to streamline and audit the medical records, looking at diagnoses. We are extremely busy. The total number of patients actively followed by the consult service went from 100 to 140 patients between August to mid-November. To be more specific, during the fourth quarter of 2001, the program consisted of 82 new admissions, 204 total patients, and 163 ongoing patients. As of January 2002, we have 180 ongoing patients who are being seen at home or in the nursing home through the palliative care consultation program.

The palliative care consultation service now includes one physician working 30–36 hours per week. I myself probably contribute another six hours per week, and the nurse practitioner works 24 hours per week.

MS: In addition, as part of the team, another nurse works 24 hours per week. We also have a social worker, who provides consultation, as well as working as part of the team.

Does the consult service give people the sort of ongoing care that home health care would provide?

MT: We see these patients on a regular basis, sometimes every week, if necessary. We might have to do this if there's no other way to get these people care. Let's say I start them on treatment, and they can't get to me; we're going to have to go out to them. And that's where the nurse practitioner piece really helps because I might do the original consult, and then my nurse practitioner goes out and sees them in follow-up. She makes sure that they're responding to treatment, and so forth. Physical therapy may be ordered by the attending physician, whose report and input can be integrated in the team assessment. But the person may not qualify for true home care, and without our consult service these people would be without support. These are definitely the "gap people."

Gateway to Other PCCHNS Services: Consultation Extends its Reach

What percentage of your clients have their initial contact with your organization through the palliative care consult service versus those who are already your patients through some other service?

MT: I would say the majority of patients have not interfaced with us before. There was one consult that I followed for nine years. This was before I came here full-time, but I considered her part of our palliative care consult service. I met her, initially, when I consulted with her physician about her pain related to radiation, and I saw her intermittently. She went into remission for her cancer and came off all her medication. For about a year-and-a-half I did not see her because she was considered free of disease. Then, her disease recurred and she entered our hospice program about a year before she died. But the total time that I followed her as a consulting physician was nine years. So, the majority of the folks that we see are not yet accessing any other programs.

It sounds as though the consultation service is one major entry point to your hospice and other services.

MT: It really depends on the nature of the illness and how seriously ill a patient is. Yet, I anticipate that the length of time between entering as a consult patient and then going into hospice, if at all, may be defined in terms of many months to years. They may not utilize our other services. That's the choice of the patient and their physician. Because of insurance issues, as well, they may be in another home care program or hospice.

When patients whom you first see as consults are admitted to one of your other service arms, how do you ensure continuity of care?

When a palliative care consult is done, and if we are co-managing the patient with a primary care physician, we tend to follow the patient into the other services. Of course, there is always a choice, and they or their physician can recommend other services.

So, let's return to the example of Mrs. Jones. The consultation had been about back pain. As it turned out, she actually had a malignancy, which is now metastatic, and she chooses to go into hospice. We would continue to provide care alongside the hospice team, if she chooses to stay with our hospice program.

Would you continue to consult even if she went into a different hospice, or only if she chose your hospice?

MT: Although we're fairly mobile for palliative care, sometimes patients end up being outside of our catchment area or may have chosen another program.

Even if Mrs. Jones is at a different hospice, with the attending physician's approval, we will continue to provide palliative care consultation.

Would the other hospice feel threatened by your continued involvement?

MT: I don't think so. It has not been a problem. They've actually been quite appreciative, at least face to face, for our input and help. It doesn't happen a lot that we're following patients served by other hospices, because often, the physician will recommend the family to select this program. Or the family knows our reputation and chooses us. So, it's the exception when the patient enters another program. In my experience, the clinical staff, particularly the nurses have expressed a lot of appreciation to us, because we continue to remain involved and provide help with symptom management.

Does having a rather visible palliative care consult service that conducts home visits serve a public relations function for you overall?

MT: I would say definitely. Greater visibility helps increase the awareness of our facility, the expertise of our services, and how these services can be beneficial.

MS: Absolutely.

Strengths: Medical Involvement and Problem-Solving Approach

Why do you think you have been able to succeed with this kind of home consultation service?

MT: We have a much more active and developed medical model within our hospice. We have seven physicians, two of them full-time, who are involved and committed to this organization, whereas a lot of hospices still rely on the old medical director model, in which a doctor is running the interdisciplinary team, but not providing consultation. Three of our physicians are certified in palliative medicine, and the rest will take the test to become certified.

MS: In addition to that, we have a need-based, problem-solving approach to care. Over and over again, when we find a problem, a patient need, our thought process is, "Let's find a way to care for these patients," versus saying, "Oh, well, we can't do that. Too bad. They don't fit in our box."

MT: We say, "Just change our box."

MS: Yes. Our leadership always reminds us to think outside the box. That phrase gets old after awhile, but it's true. We really do find ways to care for these patients, and I think that's what makes us different from other programs.

Sustaining the Consultation Service

Do you know if you're breaking even with the palliative care consult service?

MT: No, not yet. That's something I want to find out. Home visits are very expensive, and given our geography, and our traffic, we're limited as to the number of patients we can see at home. We also have developed an ambulatory setting, where Maureen McGilly, MD, and I keep office hours. The ambulatory setting helps, in terms of bringing in enough income to cover our costs.

Measuring Impact

How are you evaluating the impact of what you're doing in these palliative care consults?

MT: I think it's too early to know, because we're still really getting the structure in place to do the audits before and after. We have satisfaction feedback. And we'll be developing tools to find out what our referring physicians see as the impact of our services. It would be nice to measure quality of life for the doctor as well as for the patient. I'm intrigued by exploring the impact on both sides of the caregiving relationship.

So, one of the things I've been working on is finding good tools out there that would help us measure our impact. We can look at changes in patients' functional status and so forth, but those measures may be obscured by the fact that these people are, typically, advanced in years and/or disease.

Are you doing any baseline measurements?

MT: We are doing more symptom measurement, such as comparing pain scores before and after intervention. We're using the visual analog scale rating of pain and the Memorial Symptom Assessment Scale.^4,5

Community Outreach: Telephone Case Management

In what other ways do you try to reach people "in a gap," who are not eligible for home health or hospice services?

MS: We have a telephone case management service, which we call our Community Outreach program. There are about 250 people in that program, most of whom have been discharged from another one of our programs. Mostly, these are patients who had been receiving home health services. For example, this person would be a home health patient who no longer is homebound, or who no longer has a skilled need. We have an RN case manager who, with the assistance of a volunteer nurse, calls these patients, and assesses their status. If the patient chooses to participate in this program when he or she is discharged from home health, we complete a form that gives the community outreach case manager a little bit of each patient's history, so she knows what the concerns were. She then will call the patient and say, "How is your weight? How's your blood pressure? Have you seen your physician?" She asks some key questions to help us determine whether or not the patient is safe, or in good health, and whether he or she might re-qualify for the program. It's just a way to keep tabs on these people and make sure that they know they have somebody to call if they need it. It is the patient's choice whether or not to participate.

MT: On discharge from home health, we offer these patients a series of resources and provide them with options regarding their own health care.

What is the primary goal of these calls?

MS: The primary goal is to assess patient status, comfort, health, well-being, and really just make sure the person's quality-of-life is what the patient expects it to be.

How often do you call these people?

MS: It depends. Some calls are weekly, monthly, or only every other month. It depends on how stable the patient was on discharge, which is determined through a report from the nurse case manager who followed him or her in home health or hospice. We do a care plan on discharge from these programs. The plan and report are individualized based on diagnoses, or certain things we're looking for. We give the community outreach nurse key information that will help her establish a relationship and some trust with the patient. So, we're usually keying in on certain things that we were following and concerned about while the person was in our program.

How long does each call usually last?

MS: Five minutes, on average. Sometimes we leave a lot of messages because people aren't homebound, so they're out.

Does the nurse case manager help to coordinate community services for the patient?

MS: Yes, because there are patients in that program that end up with another home health, or with another hospice, so in a peripheral sense, we do coordinate those services, as well. Hopefully, we've taken care of linking patients with community services on discharge, but if not yet, the community outreach nurse can utilize our home health social worker, and our other team members to get some resources to people.

Are you tracking what happens to that group? For example, what percentage get readmitted to some other program that you have?

MS: Our data show that 30-40 percent of these patients are readmitted to one of our programs. The patient has the ultimate choice on the type of care they want, but many seem to find trust and comfort in our program.

How do you support the telephone case management program?

MS: Our Community Outreach program is managed by the nurse case manager, who is paid with funding through donations, and a volunteer nurse who also works in this program. We don't bill for that service and there is no reimbursement for it.

How do you justify the telephone case management program given that you have to subsidize it entirely? Of the many needs that patients have that are not reimbursed, what is it about this area that made you choose it as one to subsidize?

MS: As part of our organizational mission, we seek to promote independence, provide comfort, and offer support to people living with serious diseases. We believe that by making regular contact with these patients, we can ensure that they are receiving the health care that they need and that they don't fall through the cracks of the health care system. It helps to keep them out of the acute care system and cut health care costs in the long run. We saw this as a critical need that relates to the services we offer and implemented it with the help of our staff and volunteers. While there is an expense to the program, we believe it is a quality program that must continue because of its benefit to patients and families, as well as on the long-term cost of care.

For-Profit Home Care

I understand that you also have a for-profit private duty service. How does that fit in with all this?

MS: We started that in 1998, because we determined the need that patients had for private duty care. Many of our hospice patients may not need to go to the inpatient unit, but still have varied care needs that have to be attended to hourly. So as a supplement to our care, we determined that it would be good to have some way to meet that need and to keep it "in the family," so to speak, of our other services so as to be able to coordinate the care better. Our primary goal was to have caregivers that we could train about hospice care, so that we could be involved with them in planning the care to be provided. As a result, we embarked on a joint venture with one of our local community private duty organizations, and it has worked out quite well. That program has enrolled about 40–50 patients, who pay for the services of home care by nurses aides and "sitters" for visits ranging from four hours per day to a 24-hour live-in. This service is all private pay, and it meets the needs of people who can afford to hire at-home help.

In the past, patients and families would just hire anybody, from different agencies. And so what would happen is that we'd have a hospice patient who had hired a caregiver, and the caregiver may not have been supportive of hospice care. So, in the eleventh hour, when the dad is dying in bed, the paid caregiver may be the loose cannon. We thought, "This is horrific. If we're really going to help this family, we've got to control some of the variables and minimize the risks for them, if possible." So we wanted to be sure that families had a choice out there to obtain professional paid caregivers trained in this domain. Caregiving and private duty is probably one of the toughest businesses out there because staff turnover is a real problem. Our nurse's aides don't stay longer with us than any other agency, but we offer them more training because we are committed to offering the best quality patient care.

When caregivers leave our service, it is not because they can't take the death and dying, or the hospice-type patient. Typically, they leave because someone's offering more money elsewhere. Many patients who have chosen to hire our paid caregivers are already in one of our other programs, home health, hospice, community outreach, or our home visit program. And they need a privately hired caregiver, in addition to the services these programs provide.

Medical Home Visits Program

MS: Another program we have is the Medical Home Visits Program that serves chronically or acutely ill patients who have difficulty getting to their doctor's office but still need new prescriptions, answers to health-related questions, or help when they have a medical crisis. The program is designed for patients who are temporarily homebound after an illness or surgery but who do not qualify for skilled nursing care or home health care; or who are permanently homebound due to limited mobility, wheelchair users or patients who need a transportation service to get to a physician's office.

In this program, we send nurse practitioners into patient homes to facilitate and provide ongoing medical care. The Medical Home Visit Team provides comprehensive evaluation and treatment of acute or chronic illness; diagnostic testing in the home; monitoring of medication, nutrition, medical status, and pain; regular lab work for patients who need medication levels checked; and complete billing facilitation. These are a separate group of physicians from our medical directors and palliative care physicians. Our nurse practitioners are able to work with the primary physician to help prevent acute illness, decrease costly emergency room visits and hospitalizations, and help maintain the patient's health and independence at home. Upon patient request, physicians contracted to work with this program are also able to assume primary care responsibilities for those patients completely unable to leave their home.

We find that this program is of great benefit to families caring for both their own children and aging parents. As the parents become more disabled and have greater difficulty being transported to clinics or doctor's offices, PCCHNS' Medical Home Visit Program can help relieve some of the burden on the caregiver. The program also benefits the acute health care setting, by freeing up emergency rooms to see patients needing true acute care, not routine medical care for homebound patients that have no other access to medical care.

Meeting the Needs of Other "Gap" Patients: MediCaring Pilot Site

PCCHNS hosts one of four MediCaring projects sites.⁶ How does that program intersect with all of your other programs?

MT: We currently have about 24 patients in the MediCaring program, namely home health. All of these patients suffer from congestive heart failure and chronic obstructive pulmonary disease. Joanne Lynn observed that these patients have traditionally not been appropriate for hospice but still have substantial unmet health care needs. So, in collaboration with others, she developed this supplemental care pathway that aims to meet the needs of these patients more appropriately and to demonstrate the need for a reimbursement mechanism for this population. The results of this pilot study will provide important evidence for any future changes in reimbursement for people whose needs currently fall into a reimbursement "gap." Some of those folks may choose to go into our other programs when the time is right. We've been doing that project for about one-and-a-half years. There is no separate funding mechanism for it.

I wish there were a research grant allocation for that. That would be very helpful. But right now, that is really a participatory and non-reimbursable project that we're doing.

MS: The start-up cost was funded by a particular donor, who had an interest in this kind of care. But that part's a challenge. Our hope was to get a "carve out" from Medicare, but CMS [Centers for Medicare and Medicaid Services, formerly HCFA or the Health Care Financing Administration] wants to see the results before they'll give anyone money. They're not going to allocate money specifically for these services.

Ongoing Challenges

What do you feel are your biggest challenges right now?

MT: I'd say my biggest challenge is trying to keep up with all the need. The clinical load is huge, and yet the questions that you ask make me feel, "Gosh darn it, I wish I could find the time to sit down and quantify all the things that I do every day." That's a challenge.

Staffing is another challenge. The shortage of nurses and certified nurse assistants (CNAs) is a big challenge for our organization. Many nurses prefer the hands-on nature of hospice work, but the market in the Chicago land area is very competitive, making it difficult to recruit. We are constantly looking at how to get enough reimbursement within hospice to pay nurses competitively, but there are so few nurses to go around.

Is staff burnout an issue for you?

MS: I'm sure it's a small issue. We have a nurse and counselor who serves as a staff support counselor. We created that position about two years ago, in recognition of the fact that burnout is a potential problem. This nurse does support groups and one-on-one counseling. We also have an employee assistance program, but our staff support counselor is much more hands-on.

Replication of this Model of Care

What would be the challenges for another hospice/palliative care organization to replicate some of your successes?

MT: I think that we have an extraordinarily reproducible model. If we're really going to meet the needs of patients, we've got to have something that can be done not just in Northern Illinois. The palliative care consult service can be recreated, and personalized for the demographics of a given organization, and can help take the care to the patient, and create a continuum of care early on.

MS: The challenge is to put mission first, in spite of the financial pressures on hospice and palliative care providers. We work to provide our community with compassionate, state-of-the-art palliative care and hospice services that ease pain and symptoms and enhance the quality of life for people of all ages and their families. We do this in any setting and at any stage of life in which our services can promote independence, provide comfort, and offer support. It's key. We wouldn't have been able to do everything if we didn't keep that focus.

What else have you learned, other than that mission is extraordinarily important?

MT: I'd say the number one issue to attend to, which I have seen over these twelve years I've been with this organization, is relationships—community relationships. The greatest thing that we ever did was to stay based in our community, thereby keeping us responsive to our greater community. In partnering with institutions, we have not been swallowed up by the institution, but rather, we have positioned ourselves as a community organization serving that community and its partners. Therefore, we're seen as fairly nonpartisan, so other organizations, institutions, and hospital systems can call on our services and not feel like they are over-stepping boundaries. And we observe that patient needs are getting met. We have found that we can work with other community organizations to meet the needs of our elderly, of our homebound. We can find ways to pool resources. I think the key to this success is relationships, and community-based partnerships.

Another critical point is to try to stay true to the message of hospice and palliative care, i.e., provide interdisciplinary team care. We try to find a way to build on this interdisciplinary care model and maintain the interdisciplinary piece, because that is really what distinguishes palliative care. There's a lot of push from a lot of different directions to medicalize the model. Interdisciplinary care is not the most cost-effective way to practice, but it's the best for the patient. We know it is best because it addresses all the factors—mind, body, and spirit—that contribute to well-being and quality of life, at any point in the illness trajectory. If we hold true to these principles, maybe we can find a way to get the reimbursement to respond. I'll never lose hope.

References:

1. Hospital-Hospice Partnerships in Palliative Care: Creating a Continuum of Service. A joint project of the National Hospice and Palliative Care Organization and the Center to Advance Palliative Care. New York: Center to Advance Palliative Care, 2001. Available for download at www.capcmssm.org/content/165/
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2. Personal communication from senior author, Larry Beresford, December, 21, 2001.[Return to Featured Innovation]

3. von Gunten C, Romer AL. Designing and sustaining a palliative care and home hospice program: An interview with Charles von Gunten. Innovations in End-of-Life Care, 1999;1(5), www.edc.org/lastacts. [Return to Featured Innovation]

4. Memorial Symptom Assessment Scale. In Oxford Textbook of Palliative Medicine, D Doyle, GWC Hanks, N MacDonald (eds.). Oxford: Oxford University Press, 1993, 209-210.[Return to Featured Innovation]

5. Visual Analog Scale. In Pain Measurement and Assessment, EC Huskison, R Melzack (eds.). New York: Raven Press, 1983, 33-37.[Return to Featured Innovation]

6. Lynn J, Wilkinson AM. Quality end-of-life care: The case for a MediCaring demonstration. Hospice Journal. 1998;13(1-2):151-163.
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