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

International Perspectives

The Children's International Project on
Palliative/Hospice Services (ChIPPS):

An Interview with Marcia Levetown, MD

Dr. Marcia Levetown, a specialist in pediatric palliative medicine at the University of Texas Medical Branch at Galveston, is a founder of ChIPPS and chair of its workgroup on Administrative and Policy Issues. In the following edited comments from an interview with Dr. Levetown, she describes the goals and current activities of ChIPPS, an international project designed to improve pediatric palliative care around the globe.[Citation: Levetown M. The Children's International Project on Palliative/Hospice Services (ChIPPS): An interview with Marcia Levetown, by AL Romer, Innovations in End-of-Life Care, 2000;2(2), www.edc.org/lastacts]

When was the Children's International Project on Palliative/Hospice Services (ChIPPS) started?

I came up with the idea in about 1994. My experience working with the families of children with life-threatening illness led me to realize that such families meet a medical and service delivery system that is not well set up to care effectively for their children. Services are fragmented and often unresponsive to the particular needs of this small but important group. Other leaders in pediatric palliative care concurred. At the same time, we all felt that there was a growing knowledge base in the field of pediatric palliative and hospice care that was not well-disseminated. Finally, since it is difficult to do research on such a small population, to make further progress in the field, holding to rigorous, evidence-based methods, required collaboration among centers and international colleagues. It was a wish to address these problems that spawned this project.

What were the goals of this project?

There were several goals which emerged directly out of the problems that brought us together. The first was to create an international community of pediatric palliative care practitioners and scientists, because many of us are working in very isolated situations and don't have contact with one another.

A second substantive goal was to create a basic manual for hospices and other palliative care programs seeking to reach out to children. We wanted to give them concrete information about how to render care to these children. For example, this manual will enable a rural hospice that only serves adults to feel comfortable and prepared to care for a child in his or her home. Otherwise, a family's only option is for the child to be far away in a children's hospital during the time of his or her death. So, in this manual we're providing intake forms, ongoing assessment tools, medication protocols, demographic information, and information about grief and its management, bereavement issues and spiritual issues. It's a "how-to" of pediatric palliative care. It will also provide templates for different kinds of programs. One example is at the San Diego Hospice in California, which has a perinatal bereavement program for intrauterine and postpartum loss. We are trying to present a range of good examples of what's out there. The manual is international in scope, so we describe models from Canada, Australia, Greece and Poland.

A third objective of ChIPPS was to create a research consortium and to agree among one another what the major gaps in the knowledge base about pediatric palliative care were, and to form work groups to close those gaps through research.

Who funded the project?

The project was funded in 1998, under the umbrella of the National Hospice Organization (NH0).¹ Support for the project came primarily from the Arthur Vining Davis Foundation and The Robert Wood Johnson Foundation, with additional significant support from Anesta Corporation, Purdue Frederick and Roxane Laboratories, Inc. In November, 1998, we held an initial two-day conclave of 35 professionals from a range of disciplines and from around the world, all of whom were dedicated to the care of children living with life-threatening conditions.

How did you recruit the people who are involved in this project and who attended the first conclave?

In 1996, I gathered together a steering committee, which at that time included Ann Goldman, MB, FRCP, from England, a pediatric oncologist; Stephen Liben, MD, from Montreal, Canada, a pediatric intensivist; Betty Davies, RN/PhD, whose specialty is bereavement, based in British Columbia, Canada at that time; and Kate Faulkner, MD, a pediatric oncologist/hospice physician from the Boston, Massachusetts area. We then sought funding and an organization to host the project. Galen Miller, PhD, then Vice President of Research and Education at the National Hospice Organization (NHO), encouraged that organization to take our project under its wing. Susan Buckley, RN, MS, Technical Assistance Specialist at NHO, became the staff liaison to the project. In August 1998, following Dr. Miller's departure from NHO, Stephen Connor, PhD was hired as the new Vice-President of Research and Professional Development. Dr. Connor attended the conclave, participated in the Administration and Policy workgroup and maintains overall responsibility for the ChIPPS project.

The participants were chosen in advance of the conclave, by nomination of the steering committee. The criteria were that the person be dedicated to the advancement of the field of pediatric palliative care, with a track record and a willingness to invest in the future. In addition, we paid attention to field of expertise and country of origin, hoping to get the best distribution possible. We included administrators, nurses, physicians, psychologists, ethicists, social workers, bereavement counselors, and chaplains. Several bereaved parents, many of them professionally involved in the field, are members of the group. One member was a bereavement camp organizer and involved with Candlelighters Canada, a support group for bereaved parents.² The project convened people from many parts of the world, including Europe, Central America, Australia, the United States, Canada, and Mexico. However, there was much greater representation from North America than from other countries and we didn't have anybody from the continents of Africa or Asia. Even so, it was quite a multi-ethnic group, and we tried to be as broad as possible, with regard to both discipline and geographic location. Once at the conclave, we used the Delphi technique, a consensus method widely used in health research, to choose the subject areas that would form the foundation of the work groups and direct their efforts to cover the gaps.³ Marcia Lattanzi-Licht, MSW, LPC, was the facilitator of the conclave, and has been working with the steering committee in this role, ever since the conclave.

What benefit did you see to convening people from different countries to work together on pediatric palliative care?

We wanted to verify our perceptions of what might be universal needs in the situation of child with a life-threatening condition, and some principles of palliative care that apply regardless of one's access to resources. Including people who are working in different settings was one way to validate the assertions we were hoping to make, and we did get that validation. We also wanted to consider a variety of models. A lot of times, in the literature, people are very prescriptive about things that become very impractical. So, we wanted to be more inclusive and universal in the way that we made recommendations. It was challenging to come up with something that would be universally applicable because of resource differentials.

What kinds of things have you learned by including clinicians from other countries?

To some extent, we've learned that experiences that many of us have witnessed in our own setting are not unusual. For example, the experiences of families and children feeling abandoned, and of health care professionals never acknowledging death in children, and things like that. On the other hand, the ways medical decisions are made may differ according to culture; for example, in many European countries, there's a very paternalistic viewpoint about how to reach conclusions about the goals of medical care. In addition, we found that there is extremely limited access to pain-relieving medications in certain settings. That fact should spur us on to take some international initiatives to push for broader access to these medications and for better education of government regulators. We have not yet taken that initiative, however.

What has resulted from the Dallas conclave so far?

The immediate outcome of this initial meeting was that we began work on the manual, or compendium, of best practices in pediatric palliative care and the creation of topic-focused work groups to investigate agreed-upon research priorities.

We came up with some universal principles of pediatric palliative care. They will be included in the compendium, which is still undergoing revisions. We are also hoping to do an international research project. Our efforts to develop a model for pediatric palliative care will benefit people in countries where clinicians haven't even considered the topic of pediatric palliative care. We think that we're providing internationally useful information. However, we have not addressed such enormous ethical and global issues as the impact of AIDS in Africa on children and families there.

What are the priority areas for research that ChIPPS has identified?

Through the Delphi process we divided up into five workgroups at our conclave. We agreed on the major areas in which there are problems, and then within the workgroups, members decided what their major priorities were. The five workgroups are: the Administrative Policy workgroup, of which I am the chair; the Education Workgroup, chaired by Danai Papadatou, PhD from Athens, Greece; the Ethics subgroup, which Steve Liben and Myra Bluebond-Langner, PhD are leading; the Clinical Care group, initially led by Kate Faulkner; and the Psycho-Social Bereavement and Spiritual Care group, chaired by Betty Davies.

Within the Administrative Policy group, our goal was to do a literature review of the models that work. We are identifying the elements that must be incorporated in a program because they've been demonstrated to be useful and cost effective, as well as outlining what has been found to be impractical. We also are identifying what is unknown. Based on that literature review, we will create a template as a starting point for any demonstration project or program development. The idea is to say, "You've got to do this, and you shouldn't do that and these are the things you can play around with, but don't reinvent the wheel." Right now, we're in the middle of the literature review, which will lead, then, to the template.

The major priority of the Ethics group was to look at why the internationally agreed-upon and endorsed suggestions about medical decision making for children are not put into practice.^4,5,6,7,8 To answer this question, Myra Bluebond-Langner and Ann Goldman are embarking on a bi-national research project at two sites, Children's Hospital of Philadelphia and the Great Ormond Street Hospital in London, England. Their plan is to witness the decision-making process and family meeting discussions while they are occurring; and then to debrief with the child, the parents, and the medical care providers about what they thought happened, what they wished had happened, what was good about what happened, and how they might have wanted it to have been different. The goal of the research is to explore whether the recommendations for ethical practice and end-of-life decision making that have been put forward are consistent with what those actually involved in making such decisions want and need.

Part of what Myra is going to be looking at is how the compensation for care and philosophic differences impact decision making. I think they are working with a broader construct of palliative care in England than in the United States. Even though it's a very technologically and economically successful society, professional caregivers in England seem to accept and acknowledge that children may die, more than professionals do here in the U.S. It's been documented pretty well in the neonatal decision-making literature that our country is very off the mark with regard to how we come to conclusions about whether or not someone is salvageable or whether or not quality-of-life issues factor into decision making. In my experience, care providers in the U.S. are way off the scale in the direction of "save everyone regardless of quality of life and regardless of peoples' priorities."

The Clinical Care group is looking at how to assess pain in the non-verbal, often neuro-developmentally disabled child. They also wanted to look at creating a quarterly peer-reviewed newsletter with updated information, and ultimately they would like to have a journal.

The Education group wanted to create a curriculum that could be implemented at any of the professional disciplines' schools to facilitate better and more knowledgeable care of children with life-threatening conditions. At this point, this group has drafted an outline of a curriculum.

Finally, the Psycho-Social Spiritual Bereavement Group is going to do a project under the direction of J. William Worden, PhD, to look at men's grief, which we don't understand how to handle very well. They also have a separate project to create spiritual assessment tools, led by Liz Sumner, RN, BSN, and Paul Brenner, MDiv.

Most of the products we are working on are still in process. However, the Ethics group has posted an extensive bibliography on the ChIPPS website.⁹

Where is the ChIPPS project headed now?

We had hoped to present our findings sometime in the middle of next year by having a big conference. We would be presenting our information and inviting others to join ranks with us to continue to improve pediatric palliative care. There may need to be revisions over time to the compendium, but basically we want to create a community that has access to one other and can learn from one other and also conduct research.

An ongoing problem has been money. Because in the United States, fewer than 100,000 children die each year, compared with 2.5 million adults, many funders and even some prominent palliative care experts who are developing curricula to improve the care of dying adults believe that putting money into improving palliative care for children is a waste. Among the few exceptions are the initial funders of ChIPPS and The Nathan Cummings Foundation in New York, which is supporting another project I am involved in as a co-investigator, a national project to enhance family-centered pediatric palliative care, based at Education Development Center, Inc. in Newton, Massachusetts.¹⁰

Are you aware of other international efforts to convene health care professionals to improve pediatric palliative care?

In 1993, the WHO convened a group of experts to try to improve pediatric palliative care. The fruits of their labor, "Cancer Pain Relief and Palliative Care in Children" was published by the WHO in 1998. I think it's a very useful document, but it's not an ongoing effort at the WHO.

In addition, the International Society for the Study of Pediatric Pain (ISSP) is having its tri-annual meeting in England this summer, in June, 2000. Ann Goldman is the program coordinator, so although it's a meeting focused on pain in general, it will include quite a bit of palliative care as well.

In the United States, the American Academy of Pediatrics is coming out with a position statement on pediatric palliative care, possibly this spring.

Are there models of care in other countries that you would point to as exceptional or innovative?

The Canuck Place in Vancouver, Canada, sponsored by the Vancouver ice hockey team, opened in 1995. Canuck Place is the sole, free-standing pediatric hospice in North America. They renovated an historic 10,000 square foot home to be a pediatric hospice.

In England, pediatric palliative care and hospice are pretty well-developed. [See Featured Innovation, this issue] They have 20 free-standing hospice homes for children, who are eligible to come in from the time of diagnosis. The hospices are used primarily as respite, and children can come in as often as they want. The child can even call up and make a reservation to come in. Those central locations serve as the hub for visiting nurse operations and other sorts of things. There is one pediatric hospice home in England that's specifically for babies.

Two other participants in the ChIPPS conclave, Michael Stevens, MB, BS, FRACP, and John Collins, MB, BS, FRCP, from Sydney, Australia are establishing the first pediatric hospice program in Australia, called Bear Cottage. And Tomasz Dangel, MD, PhD, another ChIPPS participant from Warsaw, Poland, is head of the Department of Palliative Care at the National Research Institute on Mother and Child in Poland. He directs the Warsaw Hospice for Children. Children have to be imminently dying in order to qualify to be there, and /or have social problems that would prevent them from being cared for at home, or be so far away from their home visitation staff that there would be no way to accommodate the needs of the child and family at home. Dr. Dangel also established a visiting pediatric hospice program in Belarus.¹¹

As far as other innovative programs, the very large hospices in the U.S. have these open-door policies for children to be admitted. These include Hospice of the Florida Suncoast, Hospice Atlanta, and Buffalo Hospice. Some of these extremely large programs have very good pediatric programs. I know that Hospice of the Florida Suncoast is about to open two inpatient pediatric-specific hospice units. Stacy Orloff, MSW, LCSW, a participant in the ChIPPS conclave, is in charge of that program at the Hospice of the Florida Suncoast. The problem is that the U.S. Office of the Inspector General is challenging anyone that has what used to be called "Bridge Programs"� hybrid programs where patients are admitted for hospice care who do not fit the Medicare Hospice Benefit criteria.

With regard to neonatal and perinatal hospice care, Liz Sumner at San Diego Hospice, has a perinatal grief program, where she talks with women with threatened loss of pregnancy due to congenital defects or other major problems and helps the parents and family with anticipatory grief. The program also intervenes when there is an unanticipated loss, or when the babies survive the birth, but are going to die shortly thereafter.

My own program, The Butterfly Program at UTMB, is unique in that it offers a private, home-like space within an acute care setting where families can be with the dying child who may need access to special equipment or machines. Our specially designed room, the Butterfly Room, has suction, oxygen and ventilator hook-ups available, but it also has a living room area, and a TV, Nintendo™, VCR, and a little kitchenette area with a coffee maker and microwave. It's a place for a family to be together. We've had small children who were siblings up there without any restrictions; if the family wanted to bring a dog, we would have no problem bringing animals. We've had prayer vigils with whole congregations when a child was born who was never going to leave the hospital. They've come to embrace the child in their congregation and have a prayer session and then take their leave of the child. And we prepare the family about what they're going to see. We assist them in carrying out their own rituals, whatever those might be. We see this space as a way to make the transition from the "child as patient" back to being to the family's child again. In this way, family members regain complete control and "ownership" of their child.

If you think about implementing a more integrated palliative care service that begins at diagnosis, such as Ann Goldman describes in the Featured Innovation, what would the major barriers be to adapting such a model in the United States?

Money and reimbursement structures shape treatment decisions. If it's not reimbursed, health care providers and institutions won't do it. We would have to change our regulations�the rules that govern who has access to hospice. We need a system that rewards greater integration of care. Our culture of treatment, "fighting to the end," would also have to change if we were to try to integrate a palliative team into treatment from the point of diagnosis.

Can you say more about how regulatory and reimbursement structures impede best palliative care in the US?

In the U.S., care is fragmented. For example, some bereavement interventions may help the family such that the family will have fewer psychosomatic illnesses and come for less medical care later on. Unaddressed grief can manifest itself as physical pain. Bereavement care might be cost effective and wise in the long run. In the U.S., outside of hospice, where bereavement care is bundled into the benefit, the payor for the child doesn't pay for what happens to the bereaved parents, other adults or the siblings. So it's not an easy sell to say, "We ought to do this on your ticket, on your tab," because that insurer may not get the payoff later. This lack of interdigitation of the pockets of money and responsibility leads to a lot of problems.

These reimbursement issues can have longstanding consequences. For instance, providing local anesthesia for a needle stick for a child costs as much as $2.50. But the $2.50 is not additionally reimbursable, nor is the additional time needed to provide this care; thus, many hospitals and clinics won't do it because it's not "cost-effective." On the other hand, the unrealized cost is that the same unanesthetized child, as an adult may choose not to pursue appropriate preventive, diagnostic and therapeutic medical care because he is afraid of needles; in his perception, the hurt is disproportionate to the benefit. What is the cost now, and who pays for it?

Here in the U.S., the Medicare Hospice Benefit requires families to make choices they may not be ready to make. For instance, dietary supplementation is not something that's eligible for reimbursement under the Medicare Hospice Benefit. So, when these kids are fed using a g-tube (a gastrointestinal feeding tube), they may be willing and able to forgo it within a very protective and supportive context, but until they get into a setting where that type of open dialogue and conversation can happen, they won't forgo it. So, that child and family wouldn't sign up for hospice and as a result, in most U.S. settings would not have access to palliative care.

Another point that most palliative care services don't address, in the U.S. or elsewhere is the lack of bereavement care for families when children die of trauma. In our setting, the problem is connected to the Medicare Hospice Benefit. In the United States, 88 percent of children who die over the age of one year, die of trauma. Under the current hospice regulations, the reimbursement for bereavement care is bundled into the actual hospice days of the patient. If the child was not already signed up for hospice when he or she died, the family cannot access any of the bereavement benefits. For example, when a family loses a child suddenly, within 24 hours�he was a healthy kid yesterday, he's been hit by a bus and now he's dead�the grief, trauma and bereavement are very complicated. But there is no reimbursement structure to provide bereavement care for this family that is now in extremis. However, even in other countries, where regulations differ, most palliative care services don't reach out to families where children die unexpected, sudden deaths.

What are the universal challenges facing pediatric palliative care providers right now?

The big problem is getting away from what has been the cancer/adult-based hospice model. I think this separation between palliative care and life-prolonging care is one key barrier, because of the underlying psychology, "We need to fight to the end!" And fighting to the end is fine. I don't actually have any objection to that, but it needs to be in a permissive atmosphere where people know that if the treatment seems unduly burdensome that they can stop. This problem may be more accentuated in the United States than elsewhere, as Ann Goldman suggests.

Health care providers need to offer the opportunity to do concurrent palliative care and life-prolonging care, otherwise their efforts to offer palliative care will fail. Because families don't want to give up, or they don't want to be perceived as giving up, and they don't want to be perceived as not loving their children�for all these reasons they will not forgo life-prolonging therapy until the very end. If families are forced to choose between life-prolonging treatment and palliative care, then the child and the family miss out on a lot. They need to know that they can get pain relief while they're getting life-prolonging therapy. In my view, the child and family need the social support, the attention to symptom management, as well as the life-prolonging care as long as that's valued.

An article was just published in the New England Journal of Medicine, which looked at the management of symptoms at the end of life for cancer patients in a single institution.¹² The authors found that these children had excruciating pain that was totally unaddressed, and other symptoms, such as fatigue, were also not very well addressed. I think that some of the major challenges facing people doing pediatric palliative care are the recognition of pain and other symptoms and how best to treat them for children. Over the years, children have been a "protected population," so very few studies were done on them, and we don't know how these drugs affect kids. We don't sufficiently know the pharmacodynamics, or the side effects. We don't know better alternatives. We know nothing about these drugs in children. Recently, President Clinton and the FDA issued a mandate to start including children in studies and also to go back and re-label some drugs that are frequently used for children so that we can use them safely and effectively. So, I think that's another big issue: What is the best care? We don't know right now. We're just flying by the seat of our pants. We're using extrapolations from adult data, and we know from drugs that have been studied for kids, that adult data doesn't necessarily apply, and it's a dangerous practice.

Lastly, I think it's important for us to recognize and understand the potential for devastation of a family, financially, but also, more importantly, I think, psychosocially throughout their lifetimes. The potential is huge. I'll give you an example. I gave a talk in 1994 about pediatric palliative care at an Academy of Hospice Physicians meeting. Afterwards, a 70-year-old gentleman came up to me and he said, "You know, I'd like to donate a beach house I have in South Carolina to be a pediatric palliative care home." And I responded, "That's an awfully generous offer. Can you tell me what motivates you to be so generous?" He said, "Well, I'm a retired plastic surgeon, and I'm a part-time volunteer medical director and have been for about four months now, but the reason I'd like to donate my home�well, can I tell you about my son?" And I said, "Yes, I'd like to know about him." He said, "Well, I don't really know what to say, but could I show you his picture?" So I said, "I'd love to see his picture." He pulls out his wallet�and this man has one picture in his wallet, an old brown picture of a 3-year old boy. So I asked, "Did you ever grieve your loss?" And he said, "No. I never had time to do it." And I said, "You know, it's never too late." I wrote him a note immediately following the meeting, saying, "I'm really serious. You really need to take the time to grieve your son's loss." He wrote me back about two weeks later, and he said, "I did as you recommended, and I want you to know that I've just spent three hours in a room, alone with my 30-year old daughter for the first time enjoying being in a room alone with my daughter."

And so this girl lost her father at the same time she lost her brother, and I imagine her mother lost her husband and his patients lost a compassionate doctor. How many life-years of suffering did his lack of grieving cause? So, I think we really need to know how to intervene so that this kind of destructive multiplier effect at the loss of a child doesn't happen. We don't know all that we need to know about what's effective, but we need to find out because those years of suffering are just unacceptable.

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

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