The Overlapping Domains of Bioethics and Palliative Care

The field of bioethics addresses many issues that have nothing to do with death, dying, symptom management, life-threatening illness, or end-of-life care. These include, for example, ethical issues of resource allocation, issues in the development of use of stem cells, ethical issues in research, or the ethics of enhancement therapies. For decades, however, issues surrounding end-of-life decision making have been among central issues of clinical bioethics. Analysis of these issues has led to thousands of peer-reviewed publications, many books, numerous legal cases, and a few statutes, as well as to movies and novels. Underlying all these discussions is a central fact of medical progress—medical technology has advanced to the point where patients in hospitals rarely die without a decision to withhold or withdraw some form of life-supporting therapy. Thus, what used to happen without an explicit decision now requires one. Such decisions are sometimes morally ambiguous, often emotionally draining, and may be legally complex. Not surprisingly, they sometimes lead to disagreements among various parties who are involved in the care of the critically ill or dying patient. Bioethical analysis focuses upon the underlying principles that should guide such decisions.

Over the past 25 years, bioethics has developed fairly robust and widely accepted ethical guidelines for making such decisions. Those guidelines define three domains of clinical decisions:

Many pediatric palliative care cases are not ethically controversial. Often, it is clear that a child is dying. If the child’s parents understand this and, in discussion with doctors, they choose palliative care rather than or along with life-prolonging therapy, there may be no ethical controversy. Instead, the expertise of palliative care will be used to maximize the efficacy of palliative interventions in order to make the dying process as pain-free as possible. Such cases can be fraught with medical and moral uncertainty, but often they are not marked by conflict between providers and families of the type that lead to bioethics consultation. In such cases, the palliative care that is provided by skilled practitioners is as morally unproblematic as any other medical care, such as cardiology, nephrology, nursing, or chaplaincy services. That is, while there are certainly ethical issues that must be addressed in each of these fields, they are the sorts of ethical issues that are at the core of medical practice. They do not require consultation or collaboration with bioethicists.

Ethical issues arise in palliative care, as in other specialties, when there is conflict between patient and family, patient and professionals, among professionals, or when any or all of the parties consider treatment that may be in conflict with law or hospital policy. In such cases, reasonable people might disagree about what is the right thing to do. The most common of such disagreements focus on two issues: the appropriateness of withholding or withdrawing potentially life-sustaining therapy, and the appropriate use of analgesics or sedatives that could hasten the dying process. When such cases arise, the boundary between issues that might be called ethical and those that are deemed the sole and proper domain of palliative care may become indistinct.

Such blurry boundaries between bioethics and a clinical specialty are not unique to palliative care. They arise in neonatology, oncology, intensive care, pulmonology, and many other specialties. When that occurs, clinicians must decide when and whether to consult an outside expert. Such consultation is often appropriate. After all, the care of children with complex chronic conditions, life-threatening illnesses, or children who are terminally ill is and ought to be an endeavor that requires teamwork, expertise from many different disciplines, and openness to discussion, questioning, insight, and critique of clinical decisions. This teamwork is difficult to build into clinical algorithms for care. It takes time. More importantly, it requires an ethos of humility about the nature of the work that we do and the sorts of dilemmas that we confront. Today, however, clinicians in these other specialties who face complex decisions about end-of-life care may wonder when they should consult bioethics or when they should consult palliative care.

The Nature of the Work

The care of children with life-threatening illnesses is a moral experiment. We keep children alive today who have conditions that, until just a few decades ago, were routinely fatal. Our technologic ability has now reached the point where there are very few conditions that can be unambiguously deemed to be incompatible with life.¹¹ These technologies allow us to take children and their families into domains where, to paraphrase science fiction, nobody has ever gone before.

What does it mean to the parents and family of a baby born at 23 weeks of gestation to be told the odds of survival, the likelihood of disability, and then given the choice of treatment or non-treatment? What does it mean to give the family that choice or to take the decision away from them? What will the implications be if they choose treatment and their baby survives for months in the neonatal intensive care unit, undergoing numerous painful procedures, and is left with chronic illnesses or impairments? What does it mean to the family of a 5 year old with cancer to be told that the best hope for survival is a bone marrow donation from a sibling, and the best way to do that is a drug that has not been approved or studied for this indication? What does it mean for the families of children with hypoplastic left heart, or multiple congenital anomalies, or a traumatic brain injury, to be offered the options of treatments that can sustain life, but not cure the underlying disease? The only truthful answer is that we really don’t know. Yet we must choose. In that sense, what we are doing is truly an expedition into unknown worlds.

We are beginning to map out those worlds. The maps are no doubt imperfect, as are the maps of all early explorers. We are beginning to understand the long-term outcomes for premature babies born at various gestational ages,¹² and to refine our prognostic estimates using other medical and demographic factors.¹³ We are beginning to learn how to have conversations with parents in which we both deliver bad news and try to help them understand the choices that must be made.¹⁴ We are beginning to understand a bit more about parents’ experiences when faced with such choices.^15,16 We are untangling some of the quirky contradictions in the way both clinicians and families think about particular choices.¹⁷

The Future

In the brave new world of twenty-first century pediatrics, there will be fewer and fewer conditions that are fundamentally incompatible with life. That is not to say that there won’t be children who die as a result of their medical conditions, in spite of receiving all available medical technology. It is only to say that there will always be options about treatments that might prolong the lives of those children. Thus, all parents of children with life-threatening illnesses will face decisions about what to withhold or withdraw. Doctors, too, will face those decisions in each and every case in which a child is critically ill or dying.

In this world, too, we will be able to diagnose disease much more accurately and much earlier in life, often before birth. But we will not be able to prognosticate as accurately because medical progress will so alter the natural history of disease that past studies will be dated and irrelevant. We will have more and more that we can do, with less knowledge of the consequences. Decisions will take place under conditions of significant uncertainty.

These coming changes to pediatrics will challenge the process by which parents and doctors make decisions together. We are just starting to understand how parents deal with these challenges. Payot, et al, have described the differences between parents and neonatologists facing decisions about resuscitation.¹⁸ They write, “While neonatologists focus on the management of the unborn baby, parents have yet to fully conceptualize their infant as a distinct entity since they are in a process of grieving their pregnancy and their parenthood project.” Hinds and colleagues analyzed a similar phenomenon in parents of children with cancer.¹⁹ Although it was important to parents to make “informed, unselfish decisions in the child’s best interest,” it was equally important for them to “remain at the child’s side, show the child that he is cherished, teach the child to make good decisions, advocate for the child with the staff, and promote the child’s health.” Parents are and want to be active participants in their child’s care and in the decisions that are made about that care. Many do not see a sharp distinction between palliative care and life-prolonging care. They want both. They don’t want to choose. They want them to be seamlessly intertwined.²⁰ Some parents reject any discussion of palliative care or the withholding of life-prolonging treatment.²¹ The lessons that we’ve learned allow us to speculate about the future of the interface between pediatric palliative care and pediatric bioethics.

Three types of situations increasingly present occasions for collaboration between bioethics and palliative care. The first is in the management of conditions in which death is inevitable in a relatively short period of time. Such situations include metastatic cancer for which there is no further chemotherapy, multisystem organ failure in patients who are not candidates for transplantation, or degenerative metabolic diseases for which there is no curative therapy. In those cases, questions arise more and more frequently about the boundaries between appropriate palliative care and euthanasia. Such questions have already been raised in other countries and in other age groups. In the Netherlands, for example, the Groningen protocol defines certain conditions for which euthanasia is permissible.²² The protocol has led to much debate,²³ which will continue and intensify.²⁴ In particular, controversies arise in the gray zone between active euthanasia and intensive palliative sedation at the end of life.²⁵

A second common situation that calls for collaboration between bioethics and palliative care is where doctors think palliative care without continued disease-directed care is the best option for a child, and parents reject palliative care. This is a variation of the long-running debate about medical futility, but with a twist. In debates about futility, the choice is usually between continuing a burdensome life-sustaining treatment and discontinuing that treatment. Discontinuation usually leads quickly to death. Currently, the question is more philosophical than practical, what do we do when parents reject symptom-oriented treatment because they fear it signals a shift in the goals of therapy? Focusing solely on symptom-directed care today is largely offered only to patients whose parents accept it. That is not the case for most other clinical interventions. They are provided because doctors think that they are in the child’s best interest. As the field of palliative care matures, there will certainly be more cases in which doctors think only palliative care is in the child’s interest and parents reject it. The question that will arise more frequently is whether parents can refuse palliative interventions for their child.

A third situation is that in which better symptom management and better analgesia make it more acceptable to continue intensive and burdensome life-prolonging treatments. We commonly see this in oncology, surgery, and intensive care. Better management of pain and symptoms allows for more intensive care in the PICU. As Stoddard and colleagues noted, “Treating children who are critically ill with psychotropic drugs is an integral component of comprehensive pediatric critical care in relieving pain and delirium; reducing inattention or agitation or aggressive behavior; relieving acute stress, anxiety, or depression; and improving sleep and nutrition.”²⁶ Better management of surgical and post-operative pain allows children to undergo many surgical procedures. Better symptom management in oncology allows more disease-directed chemotherapy. In all these cases, palliative care specialists may find themselves facing new sorts of ethical dilemmas.

Why might palliative care professionals call for ethics consults? As pediatric palliative care services take on larger and more complex case loads they no doubt discover more moral gray zones. For example, are there differences in withdrawing fluid and nutrition in a case involving a cognitively intact child with short gut syndrome and liver failure, a child with complex congenital heart disease and intractable congestive heart failure, or a child with a massive intracranial bleed? The ethics consult service might help analyze the moral differences between a child with an intact brain but multisystem organ failure and a child with an intact body but neurologic devastation. Reflection on valid and invalid moral distinctions in such cases will help inform the palliative care clinicians and enhance the moral foundation of end-of-life care.

Summary

Pediatric bioethics and pediatric palliative care have both come of age in the past two decades. The next two decades will present both fields with new challenges. Palliative care providers will no doubt find themselves asked to address many of the dilemmas in end-of-life decision making that were once addressed to bioethics consultants. Bioethicists may find themselves asked to analyze new sorts of dilemmas that arise as palliative care becomes more widely accepted. Careful attention to the ways in which palliative care creates ethical dilemmas and to the ways in which some ethical dilemmas can be solved by the availability of high-quality palliative care will improve the lot of children with life-threatening conditions.