Pediatric palliative care physician Stephen Liben on the need for early palliative care and the meaning of “doing everything” for a child at the end of life
“There is just no better thing for the soul than reducing pain and suffering. In palliative care, we have the opportunity to do that.”
By Devon Phillips. According to Stephen Liben, so often the physician’s promise to “do everything” for a very ill child refers only to possible medical treatments while ignoring other important non-medical aspects of living, such as legacy-building and the chance for the child to go home. Stephen believes that introducing palliative care as early as possible to children and their families will support more relationship-centred care and improve the quality of life for dying children and their families. I met with Stephen in his office at the Montreal Children’s Hospital, McGill University Health Centre (MUHC), Montréal, Québec.
Q: What set of circumstances brought you to palliative care?
A: I had been working as a pediatric intensive care specialist and I was drawn to kids that were staying in the Pediatric Intensive Care Unit (PICU) for a long time, sometimes for years. I found working with these kids challenging but it was also interesting to develop relationships with them and to see how simple things like going home sooner and reducing unnecessary blood tests improved the quality of their lives. Some of the routine interventions we did in the ICU and the hospital were really not necessary and actually added unnecessary suffering. Palliative care was a new field in the 1990s and I felt a pull towards the then new idea of relationship-centred care. Then when the job opened up as the Director of Palliative Care, I got additional training, took the leap, and I have learned a lot since then. That was in 1995.
Q: Can you describe the palliative care team here at the Children’s Hospital?
A: There is no physical unit or palliative care ward at the Children’s. We are a care team, composed of myself and a second physician that are on-call 24/7, as well as two part-time nurses. We get involved with the other teams that are already in place for the child and family so, for example, for a child that’s being treated for cancer, there is a whole team including a psychologist, physicians, nurses, social workers, and play therapists already in place. We liaise with them and together create a team incorporating palliative care.
Q: Are you also involved with kids who are not hospitalized?
A: Yes to an extent. These children are connected with their local CLSCs, and their own doctors when they are fortunate to have them. We work to provide an extra layer of care and expertise in pediatric palliative care, but we do not provide primary care in the community unless there is no one else to do it. We do home visits from time to time for kids that are dying at home but we first see if we can help the healthcare providers in the community. If they don’t have the expertise or are not available, then we will do it ourselves.
Q: Where do most children die?
A: The kids, if they are offered a choice, almost always want to go home. Some children do die at home, but most children still die in the hospital. I think both parents and physicians often need to feel that they have tried “everything” and that usually means hospital treatment. We try and get children home but until it’s the end, you are never sure it’s the actual end of life.
Q. Decision making on what’s best for a child must be complex given all the different perspectives from family members and healthcare providers. Is there conflict at times?
A: Most of our difficulties are with people at varying stages of accepting what is already happening. Most physicians, when asked about their expectations for terminally ill children, will admit that there is no real chance for cure, but as long as there is even the remotest possibility of not dying, conflict can arise.
It’s rare that the healthcare team only has one opinion on the possibility for cure. What you’ll often see is people saying, “Listen, this child’s illness is incurable. We have tried everything reasonable and we really should focus on comfort and quality of life,” but then one person on the team might say, “I read about this new study and maybe it could work.” And then, understandably, the family will grab onto that like a life raft and enroll their child in that study. But this often also means that the child won’t be able to do certain things such as be at home.
Q: What about the older child? Do they have more of a say about their treatment?
A: If a child is old enough, 14 or more and certainly by age 16, they have the right to make decisions for themselves. Adolescents living with chronic illness are often shockingly mature because they have been living with serious illness for a long time. I have dealt with some who have been breathtakingly self-honest and self-aware. Some of those kids come to terms with their death way before their parents do.
Q: What would you identify as a major barrier to the delivery of palliative care to children?
A: The biggest obstacle is the myth that “doing everything” means only medical interventions when it should include everything that’s appropriate for the situation, from both the doctors’ and the patients’ points of view. When doctors say, “We are going to do everything”, it’s often not true. For example, a baby in the neonatal ICU who gets all the medical interventions means that baby possibly won’t get other important things, like being held by the mom, visited by siblings, or the chance to ever go home. Only after the child dies do people realize what they have missed. Maybe they did not know there is an opportunity for growth and relationship building, even when someone is dying.
Length of life is so often seen as the most important thing, but there is a lot of human suffering that goes with extending life as long as possible.
Q: Is there anything that we could be doing better for our children at the end of life?
A: While it is going to sound self-serving, and it is in a way, I really do believe that making palliative care available as early as possible is one way to improve outcomes both for the ill child and their family. I’d also like people to stop saying that the death of a child is not natural. Of course it’s a disaster for a parent when a child dies, it’s horrible and tragic and the most unwanted thing in the world. But is it unnatural? I don’t think so. Children do die. It happens all the time. The question is, “How can we best address this rather than deny what is already happening?”
Q: When pediatric palliative care works well, what does it look like?
A: When the child’s pain and symptoms are as relieved as much as possible, when loved ones get a chance to express themselves, and when families and the child get time to live and not just postpone death – then that is one way that palliative care can look when it works well. But this doesn’t always work. Some families say, “We want to continue treatment no matter what. We don’t want to think about the possibility of death so we are not interested in palliative care.” In these cases, we remain available in the event that changing situations result in new openness to what palliative care might have to offer.
Q: Do you have any concerns about medical aid in dying in the pediatric context?
A: The requests for medical aid in dying, or euthanasia as it is more commonly named, come from a place I understand. That place is fear. I too am afraid of dying or being left helpless and in pain and I’d rather be dead. I just think that because of that fear, a lot of other negative things will happen and that there is more harm than good with legalizing and protocolizing euthanasia.
In the case of children, I am concerned that if we leave it up to parents to decide, we will be ending the lives of children that would otherwise have lived meaningful lives. Some parents do not have the capacity to hold their own suffering; they cannot handle not having a guarantee that their child would have a life with meaning. Everyone has their own limitations and their own capacities and if given the option to end the life of their potentially very handicapped newborn, for example, I am afraid that some will choose death rather than continuing to tolerate their own suffering with uncertainty.
Q: Any last comments about pediatric palliative care?
A: Working in pediatric palliative care is an opportunity for people wanting to have meaning in their work and to make a concrete positive difference. Alleviating pain and other distressing symptoms, reducing suffering, seeing a child go home, there is just no better thing for the soul than reducing pain and suffering. In palliative care, we have the opportunity to do that. This is a great field to work in.