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

In this issue we are featuring two promising practices.

Family Letter Writing: An Interview with Navah Harlow, MA

An Interview with Dr. Stuart Farber
Living with a Serious Illness: A Workbook for Patients and Families

Family Letter Writing

New York State Law regarding family authority to withdraw life support is more restrictive than that in most states in the US. Families do not have decision-making authority unless they have been appointed health care agents or unless they have "clear and convincing evidence" of the wishes the patient expressed before the patient lost decision-making capacity. Clinicians at Beth Israel were concerned that this legal framework, grounded in the assumption of the primacy of patient autonomy as the guiding ethical principle, resulted in families, particularly families from distinct minority cultural groups, becoming frustrated that their wishes for the patient and their knowledge of what the patient would want were not being taken into consideration. With the support of upper level management (the president of the medical center and senior vice president of legal affairs) Navah Harlow created a process whereby families could communicate what they knew of the patient's values, beliefs and wishes, so that they could present their case to the ethics committee in order to honor and respect what they know the patient would want. What follows are edited comments from an interview with Navah Harlow. [Citation: Harlow N. Family Letter Writing: An interview with Navah Harlow, by AL Romer, Innovations in End-of-Life Care, 1999;1(2), www.edc.org/lastacts]

I have meetings with families, when there is no written advance directive, and sometimes when I think there might be conflict among family members. Most of the time these conversations are triggered by the necessity of a treatment decision, or by families saying, "Take her off that machine."

In these meetings, I ask families the following kinds of questions:

• Tell us who our patient is.
• What kind of a person is your mother?
• You're asking us to withdraw life support, is this what she would want? Tell us how you know.
• Did you ever have an experience where she commented on another person's situation, where the other person was incapacitated and on life support? Did she relate those experiences to her own personal views for herself?

These questions then lead to wonderful conversations, sometimes very tearful ones, and often emotional and cathartic moments for families. Once these conversations take place, we have a sense of the patient's own values and preferences, and the world view and family values that have guided the patient's life.

I then ask the family to write a letter to me, Navah Harlow, and explain that this letter will be brought before the ethics committee. Because of the strictness of New York State law, regarding withdrawal of life support for any patient without a written advance directive, we need to bring the request before an ethics committee before we can remove life support. We are committed to patients' right to self-determination, and so we offer families this opportunity to honor their loved ones by bringing clear and convincing evidence of his or her wishes, even though the patient did not articulate them in writing.

We ask that the family write a letter that includes these vignettes that illustrate the patient's values and beliefs. Then starts the most remarkable piece of all. This is a personal letter, not a legalistic one. The patient's family members use their own words to recreate and reflect their loved one's personhood. The family may bring it back the next day or the same day. This letter can be written by one family spokesperson, or can be the work of multiple family members, as long as each signs it and designates his or her relationship to the patient. It can be written in English, or in the native tongue of the family. These letters are then used to meet the standard of clear and convincing evidence about the wishes of the patient.

This process seems to be a spiritual one that can bring families closer together. We use this same process even when a written advance directive is in place, if there seems to be hesitation or differences of opinion among family members. The process allows them to clarify and review their loved one's life and helps them articulate what was meaningful for that person. For some family members, this activity of reclaiming the personhood of the patient is experienced as a last act of commitment and caring toward their loved one.

Sample letter

An Interview with Dr. Stuart Farber
Living with a Serious Illness: A Workbook for Patients and Families

In 1997, Dr. Stuart Farber and a team of colleagues at Multicare Regional Cancer Center in Tacoma, Washington, participated in a conference entitled Decisions Near the End of Life: Focus on Cancer Care, a national initiative to improve terminal and palliative care for cancer patients and their families.¹ This multidisciplinary team became the nucleus of a "Decisions" Task Force at their hospital, a group of professionals committed to improving care for patients facing life-threatening illness and their families. The task force has focused on two main projects: improving pain management (which Dr. Farber reported in 1998 in the Journal of Palliative Medicine) ² and developing a workbook designed to help patients and families who are facing serious illness clarify their own values and goals of care and communicate these effectively to their health care providers. In the following interview, Dr. Farber describes the steps he and his colleagues on the Decisions Task Force are taking to develop the workbook and to train health care providers at the Cancer Center to use the information it provides to improve the quality and continuity of care, communication, and decision making throughout the patient's illness trajectory. Dr. Farber's co-innovators, members of the original core Decisions group, include Bev Hatter, MSW; Linda O'Reiley, RN; Cherie Braden, RN; Lu Farber, MBA; and Kay Lanier, RN. [Citation: Farber S, Heller, KS. Living with a Serious Illness - A Workbook for Patients and Families: An interview with Stuart Farber. Innovations in End-of-Life Care, 1999;1(2), www.edc.org/lastacts]

What led you and your colleagues to develop a workbook for patients and families facing a serious illness?

It started with a core group, which we called the "Decisions Task Force" because it coalesced following the participation of a team from our hospital in the Decisions Near the End of Life conference. The task force originally was composed of six to eight people, including myself. I was the hospice medical director for our health system and the lone "physician champion" on the task force. The group also included the nurse manager of the in patient oncology unit at the Cancer Center (who has since been promoted to director of the Cancer Center, which has been very helpful to our overcoming barriers to the project) and the nurse manager of the medicine ward at a smaller community hospital in our system, which is a referral hospital to the Cancer Center. We also had a nurse from one of the outpatient oncology clinics; a pharmacist; and one of the managers of the hospice program.

That initial group was important because it represented many different points of view as well as most of the leverage points of where this care is delivered in our system. The group recognized that despite a lot of very talented people in our hospital system who were dedicated to improving end-of-life care, we just weren't caring for dying patients as well as we could be. So we thought, "Well, are there other ways to do it?"

As we began to consider how could we do it differently, we discussed where we ourselves had gained our knowledge about caring for patients with serious illness. We realized that mostly we learned this from the patients and families whom we cared for and, to some degree, from superlative caregivers at the bedside, both professional and non-professional. So, we thought we probably could learn something by talking to the patients and families about their experience. Listening to what they had to say might give us new insights and information that might lead us to figure out better ways to help patients and families and empower them to take more control over their care, as well helping us identify leverage points where we could influence providers. We hoped to learn what was good and bad within our system and how we as a system might better support both the providers and the patients.

Listening to Recently Bereaved Family Caregivers

We decided to hold some focus groups. It was not easy to decide who to talk to. You want to talk to people who are dying, but that's a very hard thing to do for various reasons. One, they're sick and vulnerable, and it can be a significant burden to try to talk to people while they're going through any number of treatments and vicissitudes of their illness. Plus, it's very distracting, and while they're going through it, only a very few people would be able to provide the information. It would be hard to get them together; it would incredibly labor-intensive.

So even though we thought that speaking with patients was a good idea, we abandoned it in favor of talking to the survivors, those family and community members who have cared for someone who died. They're a fairly easy group to get together. In general, most people are eager to talk about their experience, and they're still processing it themselves. So, we went to a contact person in the inpatient, outpatient, and hospice settings in our health system and asked each: "Can you get up to ten people together to have a focus group?" We asked one of the counselors who does social work and counseling support on the inpatient oncology ward, and one of the outpatient nurses, who delivers chemo and supports patients and families, and the bereavement coordinator for the hospice program. Each agreed.

We convened three groups, each averaging eight participants. Most were spouses of cancer patients who had died, but there were also adult children. These were all freshly bereaved people, no more than two to three months past the death of their loved one; the illness and dying experiences were still pretty acute in their minds.

We discussed our plans with the hospital IRB, which agreed with our view that the focus groups were being convened as an educational activity, similar to what our health system marketing department does when they assess patient satisfaction. We used a consent form, however, which told the participants what they would be asked about, and that their responses would be kept anonymous and would not attributed to them without their specific permission, and would be used to educate staff and to deliver better care to other patients and families. We developed a semi-structured set of questions, which moved from fairly open-ended questions asking them to tell us whatever they thought was important, to more specific questions about those issues we thought were important. For example, we began by asking, "How did it go? What was important to you?" Then we asked such questions as, "How was your loved one's pain managed? Was the staff helpful and supportive?"

What We Learned from the Focus Groups

We tape recorded the sessions and then our core Decisions group read the transcripts and analyzed the data to identify the main themes. Through a process of consensus, we culled it down into nine major themes, described here in no particular order:

• Living with a life-threatening illness is a dynamic, continually evolving experience for the patient and family.

The dynamic, evolving aspect of the experience is best summarized by the woman who said, "I never believed my husband was really going to die until the mortuary came to take his body away." The focus group participants really stressed that even though they were living with what seemed to be a certainty, it just didn't feel real until it became obvious.

• The unit of care is the patient AND family, not just the patient.

The family caregivers really stressed this point. They had many complaints about how hard it was to feel that they were a part of what was going on. They often felt that all the activity and decision making were directed at their loved one without appropriate recognition of their role.

• Personalized communication and obtaining information were key issues to family caregivers.

Two levels of communication were mentioned. One was the communication and sharing of information between the patient/family and the physician. If you ask patients and families the question, "How do you feel about the care you received?" they tend to say, "It was wonderful. Everybody was wonderful." But when you say, "Tell me exactly how did the communication go when you would be in the doctor's office?" they would say, "The doctor was a wonderful human being, but he only spent ten minutes with us and never answered our questions," and so forth. Families wanted personalized communication: "What will happen to us?" They wanted information that was honest and provided with empathy; they wanted a dialogue. And often, none of those things happened.

Also, families told us, "Each of us has a particular style. Professional caregivers need to recognize our style and assist us in however we do things." So, they stressed that we as caregivers need to recognize how to support that particular family rather than acting as if there were just one way to do things.

• In making decisions, most family caregivers and patients followed what the doctor told them to do.

I asked the focus groups, "How did you make the decisions you made?" In our group, which was pretty much a white middle-class group, almost without exception the answer was that they did what the doctor told them to do. The vast majority, particularly people over the age of 70, didn't quite understand what I meant when I asked, "How did you make decisions?" They looked at me as if to say, "What do you mean? The doctor told us what to do, and we did it, and that's how we do it." In the younger group, there was a lot more dissonance. A small number of people said, "You know, I went in and told the doctor that I've just been on the Internet and asked if my wife should be considered for a stem cell transplant. In fact, she'd still be alive today if he had listened to me, but he had started her on standard chemo and she wasn't eligible." They complained, but still did what the doctor told them to do. Then, another group of people said, "I can't believe I did what the doctor told us to do. If I knew now what I knew then, I would never do it, and I didn't like it, and everything we went through was awful, but I did it anyway."

So although there's variation, in the end, people just do what doctors tell them to do, even though the doctors don't realize necessarily that that's what's happening. Physicians think they're giving options, but they're not. It became clear in the focus groups that how information is exchanged and how that exchange leads to decision making was a very complex, hard topic, with many aspects that went beyond just the medical care.

• Caregiving is an awesome responsibility, but it has enormous rewards.

The family survivors talked about the incredible demands placed on them by being at home, taking care of this sick person, the fatigue and depression, and just the overwhelming nature of it on one level, and then the incredible rewards on the other level. Their descriptions brought to life the vicissitudes of their situations.

• Personalized professional caring with empathy was extremely supportive to the patient and family.

When we asked, "What were the best experiences that you had?" almost universally, the family caregivers said, "Hospice was the best experience we had during a very bad time." Why? "Because it was a personalized experience-- people came into our homes, understood our values, and helped us based on our own terms." Everybody thought that was just marvelous.

Responses broke, however, into two groups, the vast majority that had had and the minority that had not had hospice care. About two-thirds of the group that had received hospice care said, "We wished it would have happened sooner than the last ten days of life." Only five percent of those who had had hospice had it for longer than that. The other group said, "No one ever offered us hospice."

I asked those people who said they wished hospice care had happened sooner, "Did anybody offer it to you sooner?" Almost two-thirds of them said, "Yes. But we weren't ready." It was some kind of defeat or admission of mortality that they weren't yet ready to make. One-third of the group said, "No one ever offered it to us, but if they had, we never would have gone through all the horror and hell we went through the last few weeks of my loved one's life, because it was so awful." Now, whether or not it was really offered, who knows? They didn't hear the offer, in any case. So, then I said, "Well, how did you get on hospice, then?" And all of them said, "Well, the doctor or someone in the health care team came up to us and they didn't say, 'Would you like hospice?' They said, 'You need hospice. It's time. You need to go on it now.'"

They made clear that it wasn't an autonomous choice; it was the strong recommendation from the health care team that "knowing you, this is in your best interest" that led them to do it. That really opened my eyes. As a hospice medical director, I had always thought that if we just kept educating the physicians, we would get more people into hospice. That may still be true, but it hasn't seemed to work that way yet. What the family caregivers really opened up for me is that the meanings ascribed, the way we communicate, and how decisions are made are much more complex and difficult than I had previously understood. I also realized that professional caregivers can be a guide to let people know where they're going and give them some options on how to get there.

The theme of personalized caregiving did not refer to hospice alone. Rather, it's the idea that care that is really personalized to the needs of the patient/family is remembered as the best experience. For example, one family snuck the dying patient's dog into the cancer ward and the man died a few hours later with the dog beside him on the bed People remember that. And they also strongly remember interactions with the nursing staff in general, the inpatient/outpatient nursing staff, and the social work and counseling staff as positive events because these interactions were personalized to the needs of the patient and the family.

• Grief, loss and bereavement begin as soon as the patient and family learn that they are facing a life-threatening illness and, for the survivors, last beyond the patient's death. Therefore, support--particularly bereavement support--is very important.

A secondary message was that understanding what the past issues of loss have been for the survivors or the patients is very important. Their past issues of loss have a big impact on how this experience goes for them.

• Coping mechanisms--what professional caregivers can do to help support people, as well as what the patient and family can do themselves to help them get through the experience--are important.

Family members mentioned a variety of things professional caregivers can do to help them cope, ranging from the interaction with the mortician to the physician making a home visit. Other means of coping that were mentioned include reading, faith, humor, art, being with family and friends, and community resources.

• Legal and insurance issues were confusing and difficult.

Everybody talked about how confusing and difficult the legal and financial aspects of care were. We were impressed with how creative people were in dealing with some significant financial issues. With regard to legal issues, advance directives were important for many of the people in our focus groups, but almost all of them said that the doctor didn't bring the subject up; rather, they took it to the doctor. They told the doctor, "We've been thinking about advance directives, and here's what we think." But in no case did the doctor initiate the discussion.

Based on those nine themes, we began to think about how we could use what the family caregivers had told us to teach other patients and families who are at the beginning rather than the end of the experience.

How did you develop the workbook for patients and families?

In the focus groups, we were hearing from people at the end of a long and complex journey. We thought the information we had gained from the focus groups would be useful, but in thinking about giving it to patients and families, we needed to consider their emotional development and the context in which they were living their lives. If you've just learned that you have a life-threatening illness, that is a different from having gone through a series of treatments and you're in the group of people who really aren't getting a lot better. Which, in turn, is different from being at the end of the road, down to the last few days or weeks, where it's clear that you're not going to survive this illness and your life is going to be foreshortened considerably. So we began to think, "We'll need to have different instruments or vehicles to help people at different stages." One way to do that would be to have a notebook where you could add pages.

We also wanted to provide information to people in a way that would be meaningful, given where they were in the disease trajectory. It became clear that when they receive a cancer diagnosis, patients and families are just pretty much overwhelmed. They're not thinking, "Well, I need to do A, B, and C." They're thinking, "Oh, my God...how am I going to get from moment A to moment B?" So we wanted to break the information down into themes, and then use the themes in an experiential kind of exercise to help the patient/family discover whatever it is that might be helpful to them. Then, we (the professional care providers) can look at what they've written and discover something about the patient and family.

By this time, we had expanded our initial core group to include representatives from other parts of the organization, which provided opportunities for the cross-fertilization of ideas. We had some pediatric representatives who told us that for chronically ill disabled children, they provide a book, which includes a list of the patient's medications, appointments, and treatment recommendations. They said this book has become a Bible to the families of these pediatric patients. That cross-fertilization led us to the idea of a workbook that also would serve as a diary. It would contain exercises designed to elicit a statement about who the patient and family are, who should be included in communication and decision making about their medical care, and their treatment goals. After the patients and families finished their work in the notebook, by completing the exercises, we could present a distillation to the medical professionals who are providing care to that patient and family, so they would know more about what this patient and family believe.

What is the content of the workbook?

As a subcommittee of the larger task force, we first drafted the workbook to reflect the themes that we identified from what the focus groups had told us. Then, we tested it by giving it first to a few of the people in the focus groups and then to a few people who were in various stages of being ill. Based on the feedback we received, we realized that what patients and families needed was a practical guide.

So the workbook is now being completed by a group of talented writers and educators experienced in producing materials for patients and families. They simplified and rearranged the material in the workbook so that it would be emotionally appealing to people who have just learned they have a life-threatening illness. The material is presented in non-linear fashion. I describe it in the introduction as follows: "This is filled with information from people who have already been down the path you're going, but everyone is different, and information that's important really varies from person to person and moment to moment. We have designed this workbook so you can go to any page, anywhere, at any time, and do what's important to you right now. All the information in the workbook may eventually be important to you."

The workbook is entitled, Living with a Serious Illness. It contains an introduction that provides the background and it has a series of sections. The first section, Information and Communication, includes "Getting the Information You Need," "Talking with Your Doctor," and "Let's Talk About Me." Decisions, the second section, includes "Decision Making," "Family and Friends," and "Allowing Help." Resources (health care, community, and financial) is the third section . The Journal, the fourth section, includes a medical journal and a personal journal. One of the major goals of the workbook is to elicit a brief personal statement from the patient about who whoa she is, which then can guide the medical staff, caregivers who maybe have never met these people, toward understanding a little more about the person as opposed to his or her disease.

In the section on Decisions, under "Family and Friends," we ask, "How are you going to make decisions and who do you want to be involved in that?" Part of that work is to say who is your family, who in that family is going to be an integral, intimate part of supporting you in this experience, and what role do you want them to play? In that section of the workbook, the patient can say, "This is my disease, and I'm going to make all the decisions, and no one else. I don't want you to talk to anybody." Or one can say, "I've got a wife, a son, and a daughter, and they're very important, and I want them intimately involved in any decisions we make, I want their input, and I want you to talk to them and make sure that they're involved." The patients can say whatever they want, but the workbook raises those issues and allows people to go through a process of first defining, "Who is my family? Who do I want to be involved in this? How do I want them to be involved in this?" Then, "Now that I've decided that, here's a place to summarize what I would like my professional caregivers to know about how my family should be involved in decision making." That's the page that we get, which we would share with our professional caregivers so that they can personalize how they interact with the patient and family.

In the Decision Making section, we really emphasize goals. Is your goal to live to the last possible second? Or is your goal to live as long as you can until the burdens become too great? What do you define as burdens? Is your goal to really avoid medical care, to be at home and with your family and to be comfortable and to avoid any medical treatment unless it has a meaningful outcome? It's really to help patients and families understand and express their goals clearly, so that when they go back to the physician, the physician can understand what this means to the patient and family.

Is there going to be an opportunity for people to change their minds about what's important to them, depending on where they are in the trajectory?

Absolutely. That's inherent in the conception of the workbook and in the training. Remember, one of the themes from the focus groups was that living with a life-threatening condition is a constantly evolving situation. Therefore, in the training for staff we will stress that health care professionals should always say to patients and families, "You have put down here that this is your goal. Is it still your goal? Is there anything that's changed?"

How will the workbook be used in the clinical setting?

We would like the information provided by the patients through their notebooks to be cross-pollinated across their providers, but this has not yet been implemented. Based on the model provided by the pediatric notebook that families carry with them, we are planning to have our adult patients and families carry with them a simple binder or a single page that contains a distillation of whatever they've written in the workbook about themselves and their goals of care. It will be presented in a form that is concise, easy to read, and well-organized so that the health care provider can look at it in five minutes and know an enormous amount of information about how this family works and what they want. When the patient and family meet a new health care professional for the first time, they'll say, "Before you talk to me, I want you to read this stuff, and then we can have a conversation."

One item they would carry would be their personal statement. The workbook asks the patient to respond to the question, "If someone providing you with medical care was meeting you for the first time, what would you want them to know about you and your family?" We give them a variety of ways of expressing that: something written, a picture, a piece of art, a poem. That's a work in progress. People can change it, add to it, or subtract from it as they progress through their illness experience. Another thing they would carry would be a list of the medications they're taking, based on what they actually take and how often as opposed to what we think they take--in other words, something that just says, "Here's your medications. How are you taking them?" And then the third thing that we would want--and again, that would always be a work in progress--would be a goal statement: here's what I'm trying to accomplish with my treatment. For example, "I'm out here to live. I want to be cured. That's my goal." Or, "I want to live as long as I can, but if these things happen, then I might not want to live. Let's talk about it again." There might be other kinds of goals, such as, "I want my family, my wife, and my children to be a part of this." Whatever they feel is important as a goal would be presented on one sheet, very condensed, which they would carry with them and make sure, at the beginning of every encounter, that the health care provider takes a very short amount of time to review.

Where are you now in the process of developing and implementing the workbook?

The workbook has great potential, but if we don't implement it softly and well it can fail incredibly easily and be one more piece of paper that people get that sits on a shelf somewhere doing nothing.

Our goal is to create something that can be used across the system in which these patients are receiving care. We have focused first on people with a cancer diagnosis and the parts of the system in which they receive care-- for example, the outpatient cancer clinic, the inpatient unit, the radiation therapy unit, and the home health and hospice programs. Later, we may adapt the workbook to be used by people with other life-threatening diagnoses.

The goal is for people to be able to use this workbook on their own, so that they don't have to have someone come in to train or facilitate it. So the next step is to give the workbook to ten patients and families who are at the beginning of their journey with a life-threatening cancer and see what they think of it. We will field test it, get feedback in a focus group from the people who used it, and then remodel it. We will continue that process until we feel that we have a good product.

After we have a final product, we will determine what we need to do to alter how we deliver medical care to support a process that grounds medical decision making in the values and goals of the patients and families, as opposed to those of the medical providers and the systems of care we now have. We need to think about how this workbook can fit into our system and how to ensure that health care providers actually pay attention to it. And we need to train our staff to use it.

Then, the next step is to conduct a training for our whole staff--nurses, radiotherapy techs, support staff, and physicians--about how we're going to use this workbook in our system. It's going to take considerable flexibility and creativity to figure out how this training will work because the physicians have to buy in.

What barriers do you perceive now to successful implementation of the workbook?

Number one is physician buy-in and participation. That is potentially an enormous barrier to which we need to be very sensitive. It's not insurmountable, but we really need to understand that physicians have their own needs and issues, and we want to make sure that this workbook isn't used as a bludgeon to say, "You're not sensitive people; you need to listen to this. " It should instead become a tool for them to hear and understand patient/family concerns and really lift a burden off of them and make it easier for them.

In general, physicians have great difficulty giving patients the cue that it's time to stop treatment. But physicians usually have no difficulty hearing the cue from the patients and families. When they say, "You know what? I don't want to do this anymore," generally physicians feel relieved. Through the use of the workbook, we're trying to make it easy for the patients to give physicians the cues that they're ready for whatever they're ready for, and then make it easier for the physicians to follow those cues.

Physician backing is key to the success of this innovation. The physicians have been kept aware of the project, but they have not been integral to the development of the notebook. If we do all this and the physicians still remain insulated, it's not going to work, because after all, they are the major drivers of treatment. In our setting, in general the oncologists are very busy doing oncology and issues in end-of-life care are not high on their radar screen.

So it's really important how we do this. We're already starting to sit down with physicians and say, "Here's where we're at. What are your issues and problems?" and then, come back with, "We have a product that can help you with your problems." We've already begun these discussions with physicians, starting with the medical director, who was quite responsive to considering the ways in which the patient workbook might help. And one oncologist is a real champion and very supportive of the project.

The other barrier is finding the time to keep moving forward on the project, which is an add-on to everybody's daily life. You still have to do everything you normally do. So maintaining the energy and focus to get it done in the busy, hustle-and-bustle of an ever-changing and demanding world of medical delivery is a challenge for everybody.

Another barrier is that as this has become known and its positive potential becomes clear, then everybody says, "This is a great idea! We'd like to do this in the open-heart surgery, and we would like to do this in the neonatal intensive care unit, and we would like to do this in wherever." And so we need to be able to say, "Whoa! That's great, but implementation of something like this is complex, so we're just going to focus on cancer patients to start with, and we're going to wait until we really know what we're doing there, and have been successful, before we broaden it to other constituencies in the organization." I think it's important to remain really focused on doing a small, well-done project rather than trying to do too much.

I don't know if it's a barrier, but in preparation for this project and others spawned by the Decisions Task Force, we went to our administration and said, "We're going to be doing these projects and we want your support." We went to the chief operating officer, who asked some very astute questions. We got her agreement that if we could show that this thing was doing something positive for the organization and for the patients, then she would back us up. In other words, if a physician said, "You know, I don't want to do this," and we've demonstrated what a great benefit it is, then she would come down and say, "I'm sorry you don't want to do this, but you need to do this."

How will you measure the success of this project?

We are now thinking about what might be appropriate measures of success. I think there should be some indicators other than patient and provider satisfaction, some endpoints that we would hope to see. We need to think of something that's not very complex and is pretty measurable.

Clearly, however, we're going to measure satisfaction, which, in our organization, is measured by the marketing department in a sophisticated way. One of the reasons our pain management program was so well supported by the hospital administration was because the marketing department found that if patients were extremely satisfied that their pain was well-managed, then they were devout supporters of Multicare. That did more than any other argument I had to get the administration's backing for our pain management program.

At any rate, that is certainly something we need to think about as we go into implementation, to see how the workbook will affect outcomes. We need to give more thought to this and will be looking for suggestions.

How is the project being funded?

This is mainly being funded through small grant money, with a small amount through the hospital administration. I think that's been a barrier. If we had had appropriate resources, the workbook would already have happened. Once we've got the final workbook to go forward with, then we'll go for big grants to produce it and to do the initial training of health care providers to use it.

Will the workbook be helpful to people who aren't very literate or to those from different ethnic backgrounds?

I think the workbook is capable of being modified for particular groups. It can be simplified for people who aren't literate. It offers the provider, such as the social worker or the nurse, who already have the job of trying to determine the patients' values and coping abilities, a systematic way of understanding what is important to the patient and the family. So I think you could sit down and train staff to use this approach in a culturally sensitive way, as a set of exercises, with people who are unable to read or write English well. Certainly, just asking the questions about who you are, who your family is, who you want to be involved in decision making, and how you want health care providers to communicate with you and your family about your illness would be very valuable.

What I've learned from all my research really boils down to this: everybody has a certain process of awareness. Through that awareness, they connect to the world and their experience. If you as a health care provider don't know what their process of awareness is and how they connect to the world, you're very handicapped in how you're going to work with them. The workbook is a way to help any patient or family member identify what shapes their own awareness and any health care provider figure out how they're going to connect to that patient and family.

You want to ask very neutral, open questions that allow people to fill in for you their context of awareness and how they connect to it. You could do it in writing, or with a videotape or audiotape, or anything. The real idea is to accentuate awareness that then allows you to connect to the experience. That's the process that underlies whatever technique or form that we're using. The workbook is merely a vehicle to do that.

I think that in different ethnic, and particularly disadvantaged socioeconomic groups, we would depend more on developing a relationship with somebody trusted to be a facilitator of communication with the patient and family. It would be much more verbal or relationship-driven than just handing them a workbook and saying, "Go through it." At least initially, we would want to learn basic information, like, "How do you want to communicate? Whom do we communicate with in your family? And what are we going to communicate about?"

With a Native American, you could ask, "How do you want to talk about something if you're really sick?" They might say, "We don't really talk about being really sick." Then you would say, "Well, when you're sick, whom do you want me to talk to? Do you want me to talk to you or other people in your family, or who?" Again, you just ask the question to get at what their awareness is and how they connect.

What changes, if any, in your medical care delivery system do you think would be needed to support this project?

Probably the weakest link in medical care is the lack of a systematic or any kind of continuity among provider points. It's just an incredible problem. As Ira Byock pointed out recently at a conference I attended, "The way medicine is organized is that you get maximum reimbursement for individuals doing their individual treatment of their individual part of an illness, and you get very little reimbursement for any kind of continuity." So I think that's just an inherent problem in what we do, and one of the positive sides of the recent changes in the delivery and organization of medicine is that now there is a system, which provides an opportunity to improve continuity of care.

I work for a hospital that is providing many services under the same corporate banner. In trying to improve care near the end of life, our first step was to use the system by including on our Decisions Task Force representatives from each part of the system. We've brought together people from radiotherapy, pharmacy, nursing, the oncology inpatient and outpatient units, hospice and home health. At least we have all those players around the table talking about a project that would benefit care in a way that we can all be a part of.

I don't think we're trying to change our system. What we're trying to do is to recognize that we have a system and to develop our project so as to take advantage of what's already there.

References

1. Decisions Near the End of Life: Focus on Cancer Care is an initiative of Education Development Center, Inc., a private nonprofit research and educational program development organization in Newton, MA. This national initiative, made possible through a grant from the Open Society Institute's Project on Death in America, is designed to improve terminal and palliative care for cancer patients and their families. The first conference, held in Florida in January 1997, was attended by multidisciplinary teams from nineteen comprehensive and community cancer centers from around the country. [Return to Featured Innovation]

2. Farber S, Anderson W, Braden C, Isenhower P, Lanier K, O'Reiley L. Improving cancer pain management through a system wide commitment. Journal of Palliative Medicine. 1998;1(4):377-385 [Return to Featured Innovation]