The trusted source for
healthcare information and
Practical ethics in neonatal EOL care
"When the beginning is the end"
[Editor's note: This article is based on a presentation at the 2010 Pediatrics Bioethics Conference hosted on July 23 and 24 by the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital.]
Marcia Levetown, MD, FAAP, FAAHPM, principal of HealthCare Communication Associates in Houston, chose to begin her presentation to members at the 2010 Pediatrics Bioethics Conference in Seattle with a little perspective on what palliative care actually is.
The goal of her presentation was to help the audience distinguish candidates for perinatal and neonatal palliative care, as well as to help them learn now to integrate the concepts of palliative care within existing health care paradigms, and to "develop, defend and promote ethically viable palliative care plans for this particular group of patients.
"Palliative care might not be what you think it is . . . it's really the prevention and relief of pain and suffering," Levetown told the audience.
Providing palliative care requires that caregivers "tolerate ambiguity" regarding the projected outcomes of a diagnosis and allowing the families' values to play a significant role in the decisions made on that basis, which she described as a "true libertarian value."
Much of the discussion on the morning of July 23 centered around neonatal resuscitation when it makes sense and when it doesn't, and when there is a so-called "gray zone." The discussion was kicked off by John Lantos, MD, director of pediatric bioethics and professor of pediatrics at the University of Missouri-Kansas City School of Medicine and Director of the Bioethics Center at Children's Mercy in Kansas City.
Levetown noted that decision-making guidelines exist because the gray zone itself cannot be defined independent of" the application of values" of the patients' families.
"Almost all decisions end up being made within the family context," she told audience members.
Levetown, who is a physician, said she launched into her interest in ethics and palliative care because of her concern that patients were often receiving care that would not improve their chances for survival and increase suffering for the patient and their families. Too often, health care providers and members of the public don't really understand palliative care, rather than understanding it as a concurrent effort to prevent suffering and enhance decision-making, many think of palliative care as being pertinent only at the very end of life missing many opportunities to enhance the quality of life in the face of serious illness or injury.
Parents, particularly, typically want to do everything to preserve the life of their child, which is natural. But what parents need is guidance by the health care team to also be concerned about their child's quality of life. And in the face of certain death, they sometimes need to focus on a "good quality death," to help the child and ease their bereavement process, she said.
To achieve a quality dying process, caregivers should focus on timely and effective empathetic communication, effective symptom management and facilitating the "family dynamics" well.
"I submit that we do that pretty poorly," she told audience members.
Parents' expectations vs. reality
Upon the birth of a premature or otherwise life-threatened child, parents are faced with "life-altering changes in expectations," Levetown said, which in and of itself creates suffering. "What they envision [while pregnant] is that they are going to have that wonderful yellow and blue nursery," but suddenly, instead, they find themselves in the alien and overwhelming environment of the neonatal intensive care unit (NICU).
The work of one researcher (Lautrette), who Levetown said has done "beautiful work on post-traumatic stress syndrome" in members of adult intensive care units, would suggest that the emotional distress of parents could be "dramatically reduced by an orientation on what to expect," if they have a child admitted to the NICU.
As Levetown explains, "Suffering happens just because you enter a NICU."
Also, many children who are originally in the NICU, ultimately go on to be cared for in pediatric care intensive care units (PICU). And one-third of the deaths in U.S. children every year occur with neonates, and an additional 20% occur in infancy (the first year of life). This does not include the 800,000 miscarriages and 33,000 stillbirths that parents may grieve in the United States each year, according to Levetown.
What is palliative care?
Levetown defines palliative care as the active, total care of patients and their families facing serious health problems, by addressing the physical, psychosocial, emotional, and spiritual concerns associated with illness. There is no reason that this care should not be provided along side of attempts to reverse illness.
While care in hospital is generally "multi-disciplinary," with many caregivers contributing, but each ignoring the input of the others, palliative care is provided as an "interdisciplinary" collaboration, all listening to and incorporating the evaluation of the others to create an integrated and more effective care plan, avoiding the usual silos. However, "transdisciplinary" collaboration with the individual present addressing the current problem area even if it is not their specialty, then reporting the problem to the expert on the team for follow up, may enhance the timeliness of palliative care interventions, according to Levetown.
Our job is "to help you help these patients and their families (to prevent and relieve their suffering); not to determine whether this child will live or die."
Care sometimes prolongs suffering
Today, it seems that nationally, health care teams in the United States are too often "prolonging the dying process" in many cases, i.e., where the medical care is not actually benefiting the patient and is often causing unnecessary suffering without offsetting benefit.
For example, Levetown noted, "the outcomes (for extremely premature infants) are not changing, but the time in the ICU (before their deaths occur) is increasing," she noted.
Suffering occurs, she wrote, "when the burden outweighs the benefit," and that determination should be made by, and is dependent upon, "the values of the patient and family" not the values of the health care provider or society at large.
And "uncertainty is harder for parents to cope with than known bad outcomes," she writes.
For perspective, Levetown shared the following quote from Eric Cassell on "suffering and the limits of medicine": "The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick.
How physicians can assist
Physicians' failure to understand the nature of suffering can result in medical interventions that (though technically adequate) not only fail to relieve suffering, but become a source of suffering itself."
"That's really what we want to avoid," she told audience members.
The physician's role, she wrote, is to:
Physician obligations in decision-making include, she wrote:
From an ethical perspective, she said that communicating prognostic information sometimes takes more than words; sometimes it requires visual or experiential information such as videos of patients and families facing similar conditions, or talking with other affected families with a neonate or child.
Levetown also suggested that it is crucial for health care providers to acknowledge their own biases when discussing treatment options and potential outcomes with patients.
For example, it is important to recognize that based on what the families' values are determined to be, physicians often have to "counsel people differently than we would act ourselves."
One of the ethical obligations in decision-making with parents, she wrote, is to "remember the family lives with the decisions forever."