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

An Interview with Georganne Trandum, RN, OCN

Georganne Trandum directs Franciscan Health System West’s Improving Care Through the End of Life, a primary care clinic-based program in Washington state. In this interview with Innovations Staff Editor Samantha Libby Sodickson, Ms. Trandum speaks about the genesis and development of this program, as well as continuing barriers to providing exemplary end-of-life care for patients seen in a clinic setting. [Citation: Trandum G. Improving Care Through the End of Life: An interview with Georganne Trandum, by SL Sodickson, Innovations in End-of-Life Care, 2000;2(5), www.edc.org/lastacts]

Genesis of the Program

Please tell us about the history of this program.

The program developed as an outreach from the Franciscan Health System Ethics Committee. Most of the ethical dilemmas that came to our committee were regarding ICU end-of-life care. Problematic situations occur when patient wishes are unknown and aggressive treatments have been started in Emergency Departments and then the patient is transferred to ICU. Families across this country are faced with making difficult decisions regarding continued intubation, possible surgeries, feeding tubes, or other aggressive care options for their loved one. We felt we had to do something to learn about patients and families’ advance directive wishes prior to an acute hospital episode. At the same time, the opportunity to become part of the Institute for Health Care Improvement (IHI)’s Collaborative, Improving Care at the End of Life,1 came across the desk of our medical director, Dr. Mimi Pattison. The vice president of mission and ethics, the regional director of hospice, Dr. Mimi Pattison, and myself formed the team from Franciscan Health System West that participated in the IHI Collaborative. Of the 48 participating organizations in the IHI Collaborative, ours was one of only two teams that worked on an end-of-life program out in the community. The four of us attended all the IHI learning sessions, and, through the course of the year, met amongst ourselves weekly or every other week to discuss what we were doing, what was working and where to go next.

I had been an oncology bone marrow transplant nurse. We needed to have someone who could be the collaborative team leader and actually do the day-to-day work, so I took a leave of absence to assume that role. I wanted to do it—I was excited to do it. We spent a year in the IHI Collaborative. First, we learned the model for rapid quality improvement, which we implemented. Early on, we decided we would do something at a clinic, rather than in the hospital or hospice. So, over the course of that year, we created a clinic-based program in one pilot clinic and I’ve been with it ever since.

Early Identification of People in Need of Supportive Care Services Near the End of Life

What did you decide to do in this pilot program?

In the pilot clinic in Gig Harbor, Washington, there were nine physicians with whom we wanted to work, and to whom we wanted to provide continuing medical education and training. We wanted to give them some really good information about how to take care of patients at the end of life, how to have conversations to break bad news, and how to do better pain management. So we concentrated on those nine doctors, offering all of that, plus I made myself available to them to offer any kind of triage help with patients that might be dying. I sat at a desk that they had to pass by in order to get coffee. Seeing me helped spark their memory of an appropriate patient referral or a question of palliative care. We also offered lunchtime videos from the EPEC curriculum2 and time to just talk about end-of-life care in a relaxed atmosphere.

In designing the program, how did you identify the patients who needed your services?

We realized that identifying which patients were dying was the very first problem we had to solve. We spent, probably, three months coming up with different ideas that might help the clinic physicians identify the patient that is dying. We tried all kinds of fancy things: graphics, tri-fold brochures, flyers, more education. None of them worked, until we finally came up with the idea of asking them the question, "Would you be surprised if the patient that you saw in the last two months died in the next year?" If they were "not surprised" about a given patient, that was the patient who would be appropriate to have some special attention, special triaging, and connection to community resources. So, that was, like, "bingo!" It just turned out to be an excellent question because physicians were not threatened by it; they didn’t feel as though they were putting their medical judgment on the line.

As an example, I could say to a physician, "This person has heart failure. It’s been going on for years, exacerbations are more frequent, and the medications are not as effective. Would you be surprised if this person died in the next year?" It also could be true for chronic obstructive pulmonary disease (COPD) patients, and certainly all of us have followed the trajectory of cancer. A lot of doctors are very good at predicting life expectancy for patients with cancer, but not so good with those who have chronic illnesses. Of the five most common causes of death in this country, the two leading causes which doctors tend to focus on are heart disease and cancer. But there are also stroke, dementia, and pulmonary diseases; physicians rarely address end-of-life issues early enough with these patients. We really felt that before starting this initiative, health care in general was not helping the people with end-stage chronic illnesses.

Was the vision of the original program primarily promoting continuity and coordination of care at the end of life? Or was it to target the end-of-life population a little bit earlier?

Actually, it was all of that. The purpose of the program was, first of all, to identify who is dying and slipping through the cracks. We wanted to find those who were not getting the quality end-of-life care they deserve. We needed to connect dying patients and their families to the community resources that are under-utilized, but out there. We also needed to promote honest conversations with physicians so that these patients could have the benefit of quality time with their families. In addition, we needed to inform patients about their hospice benefit so that they could be referred earlier and have the longer time with hospice. Hospice is the gold standard in end-of-life care, but typically patients are not referred early enough, resulting in short lengths of stay and crisis management instead of meaningful and comfortable time for life closure. While a patient is entitled to 180 days, nationally the mean length of stay in hospice is 49 days, and median length of stay is 29 days.3 So, our initiative aims to promote continuity and coordination of care in a timely manner for patients who are seriously ill.

What tools did you need to get this kind of program going?

As the first doctors referred patients to the program, we created forms to triage those patients. Basically, that was the birth of the program. Over the course of the year, we had enough data, new forms and material for me to write a training manual on how to duplicate the program. It’s thirteen chapters, about 220 pages.4 [Opening a Clinic Checklist, one tool from this manual, is available here online.] When our participation in the IHI Collaborative ended, we were able to say to our organization, "You know, this is what we’ve created. We would like to put it in another clinic." So, at the request of the physicians, we expanded to two more clinics. We wanted to know "Would this kind of program work in a rural setting?" and it has been very successful.

I think that prior to implementing the program in a clinic, it is important to have the physicians requesting our type of service. We document the number of Medicare patients, number of physicians and types of resources in a particular geographical area prior to expanding the program to that location. Over time, physicians and clinic managers have requested we bring the service to their clinic. We are starting programs to support six clinics in Washington state this fall. Currently, clinics in Columbus, Ohio, Little Rock, Arkansas and Nashville, Tennessee are showing interest in the program.

In the initial pilot program, was it easy to train the nine physicians with whom you first started? Or, did it take a while to get people to embrace the project?

It was both. Three physicians jumped on it immediately and were very excited about it. They were internists, physicians whose patient population is predominantly comprised of the elderly, more frail and chronically ill. Family practitioners did not quite see the value in it for a much longer time, almost up to a year. In addition, over the course of that year, we had a major system affiliation change, which caused some flux in physician positions. So, in some cases, we had to start over with new doctors, and bring them on board. Currently, there are again nine providers and all participate in the program.

Contacting Patients and Families about the Program

Once the doctor made the referral to you and your program, how did you approach the patients and families?

The doctor was required to tell the patient that he or she wouldn’t be surprised if the chronic illness the patient had would cause death, and that it could be within a year or so. The physician could word that anyway he or she wanted. But we found that it is essential that the physician tell the news. The patient wants to hear that kind of information from the doctor. Then, a nurse calls or visits the patient, depending on whether the patient is in the clinic at the time the doctor identifies him or her as eligible for the program. If the patient is in the clinic, the doctor comes and gets the end-of-life nurse. She walks down the hall, and spends probably half an hour with that patient and family to talk about the program. If the patient has gone home before the referral reaches the end-of-life nurse’s desk, she calls the patient and says, "Doctor Smith told you that I’d be calling you. I’m the nurse that directs this program. He wants to know how you are doing today." Patients and families feel very validated when their doctor wants them to be contacted to see how they are doing. The dialogue and support begin here. The physician is also supported and feels that his or her patient is not being abandoned. It allows the doctor to move on to the next patient.

What do you call the program when you make the initial contact with patients?

When we talk to patients, we call it Improving Care. I’d like us to be able to use the whole program name, but we have scared away a few patients by saying, Improving Care Through the End of Life because then they think they are dying imminently. At the point of our first contact with the patient, we just begin the dialogue by asking, "How are you doing?" By reaching out to fix only one small thing, we can build a lot of trust. For example, if the patient’s greatest identified need is either a pain issue or some symptom management, we can help triage that and get that issue taken care of. So, we call a prescription in to the pharmacy, go get it, and deliver it to the home. This immediate action makes a huge difference to that patient and family.

Continuity of Care, Care Coordination and Community Services

What kinds of supportive services are you able to connect your patients with?

I think, predominantly, the ones we use are the senior centers, Meals-On-Wheels, Lifeline, shuttle services, prescription delivery, and safety inspections. Then we attend to safety issues, for example, getting bathroom bars, or removing scatter rugs, or getting rid of a lot of clutter that’s in the way. Of course, when the time is appropriate we assist in the referral to home health or hospice programs in our area. There are many other supportive services on our list, but I’d say those are the ones that we use most frequently.

What other kinds of issues can you help with?

We can address other issues in the home. Maybe it’s safety, so we can get someone in to do a safety inspection of a patient’s home because that patient is having more and more falls. We ask, "How can we prevent these falls? What kind of medical equipment could we provide that would, perhaps, prevent these falls?" Maybe it’s more a matter that the patient lives alone and is afraid. In that case, we may suggest a service called Lifeline—a personal, lightweight, waterproof help button that activates a small in-home monitor connection to an operator that can arrange for help. This service costs $40.00 to install and then one dollar a day.5 Or maybe it’s a security issue, and the patient needs a bolt on the door. Sometimes a patient may need someone to create a connection with a neighbor, someone to say to that neighbor, "If this person’s blinds don’t go up in the morning, could you please call or visit, go knock on the door and see if she’s okay?" We may just do something very simple, but what it does is build some rapport and some trust so that then we can begin talking together, truly, about the end of life, life reviews, spiritual renewal, family connections, and living while dying.

Can you tell me about the spiritual component of your program?

Well, early on we recognized that patients are grieving about their losses. Loss of health, of course, but they’ve had many other losses that no one has really addressed. They just figure that’s part of getting old, but they’re depressed and sad, they may cry a lot, they feel hopeless or that they’re a burden. Our volunteers call patients at least once a month and we have trained them to listen for unresolved grief issues so that we can arrange the appropriate support. We realized very early on that we needed a chaplain to be part of this program. So now, there is one chaplain connected to every end-of-life care clinic. Those patients who are identified as having a grief and loss issue, or a spirituality issue, by either the end-of-life nurse, the doctor, the volunteer, or anyone who’s interacting with them, are referred to the chaplain. The chaplain makes home visits, follow-up phone contacts, attends advance care planning sessions and may also facilitate a reconnection to a patient’s own faith, church or synagogue, if desired. Then, the chaplain stays connected to these patients throughout the time the patients are in our program. Later, when patients transfer to hospice, we transfer all our spiritual care to the hospice chaplains.

The Role of Volunteers

What do volunteers in your program tend to do? How do they get involved, and what are their roles?

Most volunteers have come to us because they have read about the program, either in the newspaper or through some community-based circle of knowledge. We try to have volunteers that live in the particular community surrounding a clinic support that clinic. We try to keep everything as community-based as possible. Now we are finding that this is very expensive, so in time, we may have to centralize some of that. But at this point, and for the last three years, we have had volunteers centered around each clinic, with a volunteer coordinator in each clinic. The volunteers are trained to make phone calls to patients, and to be a companion by telephone. Once they’ve had hospice volunteer training, they can reach out and go to the home, or go out to coffee with a patient enrolled in the program. The people in our program, of course, are not on their deathbeds. They’re still going out for dinner and lunches, and sometimes they are doing quite well. But some of them are more homebound, and they’re lonely. If hospice-trained, the volunteer can spend time with the patient at home and if the volunteer wishes, continue with the patient when the patient is admitted to hospice. This relationship with the volunteer allows for great continuity of care.

How do you train the volunteers?

First of all, the people who come to us are always caring, compassionate people, or they would not even want to do this work. So, we really build on that foundation. We interview them, and do the obvious usual checks on people’s references, and so forth. Then, they have a three-hour training just to learn about the program and how to do the phone calls. Within six months, we like them to have hospice volunteer training. However, that is not required if they only want to remain a phone volunteer. Every month we have a meeting, one hour of which is continuing education about end-of-life care, dying, spirituality, etc. Then, the last hour of the meeting is to provide support for those volunteers. We ask them to reflect on their experience, for example, "Tell us about a case that either bothered you, or worried you, and let’s just discuss that."

Do you provide bereavement support for your volunteers?

Yes. If they are hospice-trained, they can stay with the patient when the patient moves on from our program into hospice. In doing that, number one, they stay with the patient until death. But, also, because they’re hospice-trained, they get bereavement counseling and assistance from the hospices. Our program’s bereavement counseling is one-on-one. Each volunteer coordinator handles anywhere from fifteen to twenty volunteers. So, when a patient dies, the volunteer coordinator calls that volunteer. They may talk over the phone, or meet for coffee, or the volunteer may come in for a hug, or just to talk about what went on for the patient. We have a library of books, articles, and videos on bereavement to assist the volunteer through this time.

What kind of bereavement support do you offer the families of patients in your program?

Most of our patients ultimately are admitted to hospice care. That’s our goal. To date, seventy-three percent of our patients receive hospice care, (more than three times the national average)6 so the families of those patients automatically receive a year-and-a-half of hospice bereavement care. For others that did not make it to hospice, or for some reason didn’t choose hospice, our chaplain calls the family two or three times. The volunteer also calls the family two or three times, and we mail bereavement pamphlets to them. But that’s about as far as we can take it because the staff must necessarily remain focused on meeting the needs of other patients who are entering the program.

Making the Bridge to Hospice Care

Can you describe the relationship the Improving Care program has with hospice?

We have improved referrals to hospice and the hospice lengths of stay. In this community, we have four hospice companies, and we refer to all of them. The physicians in the Franciscan clinics are aligned with the Franciscan system, so, obviously, there are going to be more referrals to the Franciscan hospice program. But that doesn’t preclude us from referring to other hospices, depending on what the patients, families or doctors prefer. By law, we literally have to tell them about all the hospices in our community, and then we have to ask them, "Which hospice would you like?" The families have to choose, or the physician directly writes an order, but we, at the program, do not make that decision.

Once we help the physician, patient and family determine "Yes, hospice is timely," we call the referral and send all the paperwork. In this way the hospice starts out with a wealth of psychosocial and medical information on this patient, which otherwise they often don’t have at their fingertips when they first start out with a patient. They appreciate having that information. Also, the end-of-life nurse in our program continues to provide a triage function in relationship to the clinic. For example, when a hospice nurse needs an order change for medicine or some sort of treatment, she calls the end-of-life nurse, who walks down the hall, gets the order changed, and comes back and tells the hospice nurse the change of order, or calls it in herself to the pharmacy. This is a service we provide for all hospice nurses with the hope of eliminating calls going through the regular switchboard, waiting on hold or for a call back. In that sense, it makes for smoother communication and continuity of care with the patient’s primary care physician. In Washington state, the primary care physician (PCP) usually remains the point of contact for the hospice patient’s orders. In some other states, the hospice medical director or physician becomes the point of contact. We feel the best continuity of care is to establish the doctor-patient relationship early on and continue that contact. It does not have to be the PCP, but it does have to be someone who learns all he or she can about this particular patient and then continues to follow that patient until death. Families and patients feel abandoned if their doctor is not available to take calls or prescribe changes in medications. This is especially true during any crisis. The end-of-life nurse facilitates those calls.

What happens if a patient is no longer eligible for hospice or improves after being referred to hospice? Can he or she come back to your program?

It is very important that we be good stewards of the Medicare Hospice Benefit money and we want to be sure that patients preserve their benefits. So, we tell patients from the very beginning, "If you stabilize and you are no longer actually failing or actively dying, you may be discharged off hospice." We tell patients, "This is not a bad thing." They all kind of laugh about that and call it graduation. So if a patient stabilizes and is discharged off hospice, that patient is then transferred back to the Improving Care program, where we reconnect him or her with the same nurse, chaplain and volunteer if possible. Once readmitted to the program, the patient is contacted by his or her volunteer on a regular basis and assessed as before for any physical, emotional or spiritual needs. A readmit to hospice is completed when the patient again falls within the hospice guidelines.

So, your program really fills in the gaps.

Yes. This is called a bridge program. We are a bridge to all those community resources, including hospice.

Financing the Program

How do the clinics support the cost of this program?

At this point, it’s all very creatively financed. Some of the clinics pay for the nurse, some pay for the volunteer coordinator, some pay for the chaplain, and some pay for two or three of those positions. The goal is for the clinics to assume total cost of this program by the end of the third year that the program has been in place. The clinics that have been opened the longest are working towards that.

Who is assuming the remaining cost right now?

The remaining cost is assumed by grants. Mostly, the program has been all been grant-funded and foundation-funded. Our focus this year is to figure out reimbursement. We are doing some studies with some insurance companies, some payers, and we have a request in for some Congressional appropriated funds to work on a long-term study that could lead to future reimbursement for this type of care. We are also a member of The National Advanced Illness Coordinated Care Council, an initiative that brings together accomplished, innovative leaders in end-of-life care, administrators in health systems, and insurance executives to integrate advanced illness coordinated care programs into mainstream medical practice.7

Physicians should get paid for taking care of dying patients; for example, they should be paid a fee for advance care planning sessions with patients and families, which is probably the most important part of the program. An advance care planning session takes an hour and a half of time for the physician, the family, the end-of-life nurse, and the chaplain to sit around the table. The goal is to discuss the patient’s diagnosis, what the expectations are down the road, what treatments are available, and what this patient and family’s values and wishes are. We really feel that this conversation is key in allowing the patient to verbalize his needs, feel validated and supported. Listening to the patient! What a novelty!

Insurance companies are interested in our program because they feel that if these conversations take place, it will make a difference in how patients are cared for, and be more cost-effective. The key questions are: How can we pay these physicians for these activities? How can we, or maybe should we even get down the road to where we have a per diem per patient, or should we carve out, like Joanne Lynn talks about with the MediCaring program?8 Somehow, we need to compensate physicians for taking care of this particular population.

Any other thoughts on the relationship between financing care and providing quality end-of-life care?

I just think with 80 million baby boomers coming through, we will have to find the money for palliative and supportive care for people near the end of life. With medical technology, people live longer with chronic illness. Patients and families have unmet needs prior to hospice. We need to figure out how to pay for that support when they need it.

We know physicians are being asked to increase productivity and this decreases appointment time spent with patients. We need to support doctors in giving this population the time they need to process what is happening to them. You cannot do that in ten-minute blocks of appointment time. We just have to figure out how to pay physicians something extra as an incentive to take the time for these patients. Time invested at this stage can avoid those expensive ICU hospitalizations in the last six months of life. Besides, it is the right thing to do! It is just a matter of revamping the current codes, how we bill for services, and how we’re reimbursed for them.

Offering Improving Care Through the End of Life in Different Community Settings

Please tell us how this program is being replicated, and about the process of adapting it to the needs of different communities?

It is easily replicable because, number one, the concept is quite simple: just two to three people in a clinic reaching out to that clinic’s dying patient population. Over the first year, we created forms and some training that we can now share with others to get a similar program up and running within a couple of weeks.

The pilot clinic is in a virtually all-white, economically diverse community. Then, we have the rural clinic on the plateau that is economically diversified. Now we’ve also got a clinic going in the inner city, which has even more diversity in terms of race, ethnicity, culture and economics. The volunteer component both at the rural setting and at the pilot program was never a problem; we almost have more volunteers than we need. But in the inner city it has been harder to build an adequate volunteer base. Otherwise, the program is virtually the same in all three settings.

We helped staff at the Providence Health System in Portland, Oregon start an Improving Care program in two clinics. They used our training manuals and adapted the program to fit their needs and patient population. They are trying a different approach, which I think is interesting; they are using social workers instead of nurses as the point person. In addition, they have a nurse practitioner who floats between the two clinics, and who answers medical questions. Truly, I think this is a good test because a lot of what this nurse care coordinator actually does is social work. But the physicians in the Franciscan clinics seem to prefer having a licensed nurse be the care coordinator, so they can give an order to her, and she can make it happen. Whereas, if it’s a social worker, physicians have to write the order, and they don’t want to take the time. Actually, the job is probably 50/50 registered nursing and social work. So, it makes sense to try it as with social workers serving as care coordinators, as long as they have access to a medical person.

Another model we are trying is a "floating team" out in the community. This is brand new. We have a nurse, a volunteer coordinator, and a chaplain situated in one clinic, who actually support two other clinics, as well. We’re trying to see whether this floating team can do the same thing, more cost effectively, than having a team situated in each particular clinic. Many clinics only have one or two physicians, and it would be prohibitively expensive to have a complete team in a small clinic. So, now we’re trying this floating team, and if you call me back in a year, I’ll tell you how it worked.

Advance Care Planning

With a floating team, how would you handle the advance care planning session?

It wouldn’t be any different because the advance care planning session is scheduled far ahead of time. It’s not like a hospital conference, in which it’s imperative that the family comes together with the physician and you decide "Should we do a feeding tube, or take Grandpa off the vent?" We’re saying, "In three weeks, or a month, we would like to gather your family and the physician together on a Friday, or some other day, and pull in the out-of-town adult kids so that the conversations around the table include all the important players." Then, you don’t get those last-minute changes from brother Joe who flies in from Minnesota and says, "You have to do everything for Mom. That’s what I know she wants," when the rest of the family already knows that isn’t what Mom wants.

What kind of response have you had to these family advance care planning sessions?

They have been extremely successful. They do take an hour to an hour and a half, but the patients just love them. The physicians really like the information gathered at these sessions as it helps them in a plan of care down the road. The worksheet that we fill out during that whole conference is copied and sent home with the family, so they have the discussion right there, including some quotes, and it also becomes part of the medical record in the clinic. We have done these sessions as consultations for other physicians, who either do not want to have this conversation, or cannot. Some just feel they’ll never get there but we feel the patient is still entitled to this frank discussion, in spite of the fact that his or her particular physician is either not skilled, or doesn’t want to go there. So, we offer it to all physicians that are part of this program, and tell them, "We’d like you do it, we would like to support you, or even have you come and watch another physician that is talented at it model the process for you. Come be a part of this so that down the road, you will be comfortable doing it." Now, some have taken us up on that, and some have said, "You know, I’m never going to like that part of my practice, so you people just take care of it." But the outcome is favorable for all players.

Do the physicians who feel they are not skilled at these conversations let you conduct them?

Realize that with this team right in the clinic, we’re very present. So, we know who’s skilled and isn’t skilled, just from the history. Then we can help bring them along, but not in any confrontational way. Every clinic has to have a champion end-of-life physician who is really on the side of the patient and is trained and preferably certified in palliative medicine. But barring that, each clinic has at least one physician who is good at having these conversations and has an interest. Colleagues then tend to defer to him or her, and say, "You’re good at this. If you don’t mind doing this, please do this for me." We think that’s great if the champion physician is willing to do that, and we feel that physician should be rewarded, financially, for taking on that extra duty.

Impact on the Work Environment

Can you comment on the impact of program on the clinic work environment?

Physicians are being placed in a very good light with their patients, so they like that. They also appreciate having someone watching over, this fairly "fragile" patient population—a group of patients who usually take a lot of time for their regular triaging nurses. Their triaging nurses, more and more, are becoming medical assistants. They are the ones that are just taking phone calls, writing down the information, and the doctor is the one who actually has to work with every single patient. So, with their time being at a premium, and productivity requests being high, physicians don’t have as much time to have these conversations with patients, and they’re glad that somebody else on the health team is doing that.

Feedback from the Patients and Families

What kind of evaluation or measurement of outcomes have you developed for this program?

We have developed an Access database that we use for collecting patient information. Every month, through the volunteer’s call, we learn about patients’ satisfaction on five given areas: understanding of medical diagnosis and medications, safety in the home, coping with grief and loss, nutrition, and symptom management. The conversation with the volunteer goes wherever the patient wants to go, but at some point during the conversation, it is the volunteer’s job to address at least these five areas of satisfaction. We are also collecting data on advance directives, beginning with something as simple as, "Do you know what they are? Do you have one? Where is it? Have you made one to go in your wallet? Who else have you discussed these preferences with? Is it just your spouse, or just your physician?" Then, every month, we follow-up with something else about advance directives.

The third thing we measure with every volunteer’s call is overall satisfaction. Every month, at the very end of the call, each volunteer asks, "Overall, how is your satisfaction with the care you are receiving from your physician and this program and in any way from your community?" "Is life looking okay? Are you feeling pretty satisfied with what’s going on?" The possible answers to that question are "A lot better, somewhat better, unchanged."

Lastly, we collect data on the number of supportive services offered, chaplain contacts, deaths with and without hospice and hospice length of stay. We know month-to-month where each clinic stands on these measurements. This information helps create benchmarks for evaluation on how we are doing.

Have you made any changes to your program based on some of the feedback that you collected?

Oh, definitely. It has been very beneficial. In fact, that is how the "rapid improvement model" works. We make a change for a small sample of patients and then evaluate if it works. If it works, we build on it and if it doesn’t, we try something else. That is how we created the entire program over the course of the first year. And it is how we continue to evolve as we are expanding.

Early on, we found we had to have a chaplain because the "recent loss" satisfaction area was just terrible. Really, sadly, terrible. Patients and families just did not have any support in this realm. We now talk a lot about grief and loss. We ask about spirituality, "What feeds your spirit?" We ask our patients, "How did you handle difficult situations before?" so we can learn what patients’ strengths used to be, and then we can build on those. If it used to be, for example, a lot of prayer or support groups, we’ll get that person into prayer or support groups. If it is, "I used to walk on the beach and that’s where I took my problems," maybe our job is to get that patient to the beach. This feedback helps direct the plan of care.

Another key area we’ve learned about has been patient knowledge about diagnosis and prognosis. We ask, "How satisfied are you that you understand your diagnosis? What’s going on with this illness, and the medications you’ve been given?" I’m always sad when I hear that a patient doesn’t know a thing about his or her diagnosis, or the medicine being prescribed. But we realize, some patients don’t want to know, and that’s okay, as long as we know that that’s what they want. So, we try to find out by asking, "Do you want to know more about your diagnosis and what usually happens with the course of this illness?" Some will say, "Absolutely," and some will say, "No." We just want to know so that we can guide the doctor, and say to him or her, "This patient wants to know more. You need to really talk in the next visit about the trajectory of this illness and where you see this is going with this patient." From those discussions we can create the plan of care.

Other areas we talk about with people are safety and nutrition, which are rarely talked about during exam time in the clinic, unless there’s a particular weight loss noticed or gastrointestinal upset problem. So we spend quite a bit of time around, "Are you eating? Where are you eating? With whom are you eating? And what kinds of foods are you eating? Is it satisfactory? Is it adequate? Are you maintaining weight?" That’s how assessing patient satisfaction and other feedback have changed the program.

Barriers to Good End-of-Life Care: Changing Physician Behavior

What are the main barriers that you’ve been able to overcome?

The most challenging areas are tied to physician behavior—identifying patients, getting physicians to change the way they talk to patients, changing the offering of aggressive treatment to a patient that either doesn’t want it, doesn’t feel it is necessary, or maybe aggressive treatment just is not appropriate. It is not that physicians do not want to do a better job. In fact, I think 75 percent of those we have worked with have been eager to learn these skills.

How does the training that you do affect the behavior of those physicians?

Seeing results over time changes behavior. Our program has been in the clinic for a few years now. We have been available, talking, taking care of their patients, and two or three years later, we actually see changed physician behavior. This process is not rapid. The first year, you can get referrals to the program and that’s fine. But I didn’t see actual changed physician behavior until the end of the second year, when they were really comfortable starting to have these dialogues, offering advance care planning, and doing good pain and symptom management. It just really depends upon how much effort is spent in discussion with these doctors, and if there is a good rapport between the end-of-life nurse and the physicians. There needs to be a back-and-forth exchange, which is different from the kind of communication that takes place in the typical doctor-nurse relationship. The hospice teams are also excellent in care management and make good suggestions for changes in the plan of care and orders to the physician, which is another way of learning.

So, if someone were to replicate this program, you might suggest that they expect that it will take longer than a year to see any changes in physician behavior take hold?

Well, I hate to say a full year because some physicians are so excited about this program right from the get-go and are just eager to learn. I don’t in any way want to sound disrespectful of the physicians—I think they’ve never been trained in this domain. I think they want to do better, they are just limited in time and expertise in this, and they’d love to know more.

My feeling is, let’s put nurses in there that do know how to do it and have had that bedside experience. They and the physician champion in the clinic can help model it for these doctors, and bring them along. I also think it takes a dynamic personality to make this kind of a program work in each clinic. The nurse care coordinators have to be able to speak up, reach out, be sharp, a little savvy, all that sort of thing. If you are a little more quiet and shy, maybe it doesn’t work as well. My background in oncology and bone marrow transplant, being older, and having a lot of experience, has made a big difference. I don’t have any problem approaching a physician and saying, "You know, we really need to do advance care planning here. We need to talk with this family. You can do that. We’d be happy to be in the room and help support you, but they need to hear it from you. You are the doctor, the leader of the team, you’ve got to take that role." Now, some nurses are not comfortable saying that. So, I just feel that we have to select people to do this kind of work who do have that comfort, and can help bring physicians along.

The floating care team is where I think we’re going to have the bigger barrier in this regard. I don’t think there will be any problem setting up referrals, getting patients connected to volunteers, or with the chaplain visits. I think the problem will be, "Will we really change physician behavior if we are not in the clinic, face-to-face with that doctor?" My suspicion is it will either not happen, or it will be slow. But we have to try it to see.

What other thoughts would you like to share with our readers?

I think we always have to take it back to the patient level. Whenever I get bogged down and feel as though everything is bureaucratic, I have to go touch a patient’s hand, sit at a bedside or by a chair, or visit with someone in a clinic, and remember it is this patient, this little 87-year-old woman who is desperately trying to take care of her 91-year-old husband and keep him at home. They’re both failing, their children live hither and yon, how can we help them stay home and be viable? That’s very important to me—to remember to take it down to just the individual patient and to keep it all as simple as possible.

We don’t have to do rocket science to be good at taking care of a patient who soon may die. In Europe and many other parts of the world, health care professionals do a much better job at this. Other cultures and health care systems seem to embrace end-of-life care as part of the circle of life, whereas we in the United States don’t do a very good job of that. I think we need to change our culture and expectations. It is going to happen. With these 80 million baby boomers coming through, we’re going to have a lot of chronic illness and a lot of people dying in this country, and that may be what really changes our attitude. I think we have to get back to the very simplistic, "What can we do for this patient, this family, right now?"

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References:

1. Since July 1997, Improving Care at the End of Life, an initiative of the Institute for Health Care Improvement (IHI), has involved 48 health care institutions in collaborative efforts to improve the quality of care for the dying in the United States while also reducing unwanted, non-beneficial care. For more information, visit the IHI website at: http://www.ihi.org/collaboratives/completed/bts-endoflife.asp or visit the Resources and Tools page of the Current Issue of Innovations.[Return to Featured Innovation]

2. Education for Physicians on End-of-Life Care (EPEC) is a project of the American Medical Association's Institute for Ethics and is funded by a grant from the Robert Wood Johnson Foundation. For more information about EPEC, see their website at http://www.ama-assn.org/ethic/epec. This project may be accessed from the Resources and Tools section of this issue of Innovations. [Return to Featured Innovation]

3. Facts and Figures on Hospice Care in America. National Hospice and Palliative Care Organization. August, 2000. [Return to Featured Innovation]

4. Trandum, G. Improving Care through the End of Life Training Manual; 13 chapters; Franciscan Health System; Copyright 2000. gtrandum@wolfenet.com; or georgannetrandum@chiwest.com [Return to Featured Innovation]

5. Lifeline Systems, 640 memorial Drive, Cambridge, MA 02139. [Return to Featured Innovation]

6. Facts and Figures. 2000. [Return to Featured Innovation]

7. Principal Investigator Dan Tobin, MD of The Life Institute, 113 Holland Avenue, Albany, NY 12208-0980.[Return to Featured Innovation]

8. Lynn J, Wilkinson AM. Quality end-of-life care: The case for a MediCaring demonstration. Hospice Journal 1998;13(1-2):151-163. [Return to Featured Innovation]