Coordination between services

The structural organization of the contemporary hospital can constitute an obstacle in its own right to effective communication with patients and their parents about the plan of care in complex medical cases. Intensive care units providing technically sophisticated support are typically staffed with specialists in critical care, but the patients whose illnesses have reached a critical point can be referred to those services from a variety of different specialties – transplant, cardiology, pulmonary medicine, oncology. When the attending physician on the referring service and the ICU attending have different priorities, opinions, or treatments for the same patient, whose opinion governs care? This is not a question that should be determined by power within the institution or hierarchy of medical specialties, but realistically, there are few areas of human interaction in which relative power does not play a role. Coordination, communication, and cooperation between services is a problem of organizational structure, too important to be left prey to the personalities and varying skills of individuals.

The problem of coordination and communication arises on many levels. In many hospitals, the physicians in training, the residents, have more contact with individual patients than their supervisors, the physicians who are training them in their specialty, but quite rationally might fear to challenge their decisions. The various professional groups among clinicians, united by a Hippocratic commitment to the well-being of their patients, nonetheless may have differing priorities, reflecting their different professional ethics.

Palliative care

Palliative care has been defined as care that seeks to prevent, relieve, reduce, or soothe the symptoms produced by serious medical conditions or their treatment, and to maintain patients' quality of life. Ideally it is a part of the treatment plan from diagnosis on, but if it is considered an alternative rather than supplement to curative medical interventions and identified only with end-of-life treatment it can pose ethical dilemmas to physicians and families. If it is necessary to accept that death is imminent for a child with a life-threatening or chronic illness, introducing palliative care might be seen as a decision to “abandon hope” and thus may be resisted, both by families and by caregivers who have an emotional stake in the success of their treatment, risking undertreatment of pain and inadequate communication and discharge planning.

In the USA this bifurcation is resisted by considering palliative care to include end-of-life care planning and inpatient or outpatient hospice care, as well as pain management, but there are reimbursement obstacles as well as conceptual ones that make it difficult to more tightly integrate palliative care with mainstream medical therapies. As a result, palliative care is more likely to be a focus in children with terminal illnesses than in children facing chronic or life-threatening illness. It is to be hoped that the growing presence of multidisciplinary palliative care programs in US hospitals, as well as increasing emphasis on pain control and end-of-life care in medical education, will eventually mitigate this compartmentalization and bring the USA more in line with standard practices elsewhere.

Institutional arrangements can impede or facilitate ethically excellent medical care. As clinical ethics matures, increasing attention is being paid to the institutional contexts in which health care is provided, and the ethical impact of recent changes in methods of care delivery. The growth of this new area of bioethical focus is adumbrated in the third of the articles in this section. Thinking about ethics in organizations, as well as in the interactions between individuals, can take various forms. Clinical ethics problems can be caused or exacerbated by structural arrangements within institutions. Recurrence of similar clinical ethics problems can sometimes be prevented by institutional changes in staffing, accountability, or interventions. Further, many clinical ethics issues, such as confidentiality, informed consent, or disclosure and truth telling, have institutional analogues which must be addressed by different strategies than their individual-level counterparts. Institutional structures or routines can cause ethical problems in particular cases, and sources of ethical distress which are out of the control of individual caregivers can sometimes be ameliorated by scrupulous attention to institutional processes. Heightened sensitivity to ethical issues in clinical practice opens the door to considering ways in which the organizations within which clinicians practice can improve their ethical climate.

The three cases in this part call attention, in different ways, to structural sources of ethical perplexities. In one case, the structure of medical practice causes difficulties that thoughtful structural interventions can ameliorate; in another an institutional component, the ethics committee, carries out its function in a way that impedes, rather than facilitates, the ethical climate of an institutional unit.

The editors would like to offer their thanks to the authors of the chapters in this book for their thoughtful contributions. Inheritors of a long tradition of silent service, they have been willing to add their voices to an ongoing dialogue between providers of and observers of medical care in the late twentieth and early twenty-first centuries, for which we are grateful.

The children and the families for whom we have had the privilege of caring during their various illnesses are honored as well in these pages, though the details of the cases have been changed by the authors to prevent any identification of particular patients.

Although it is the physician's voice that is most often heard in this volume, we gratefully acknowledge that the work of the hospital involves many helping professions, including nurses, therapists, chaplains, social workers, and clinical ethicists.

The areas of pediatric medicine and of medical ethics have been impoverished by the loss of William A. Silverman, who died as this volume was in preparation.

The book has been greatly helped by the thoughtful comments of anonymous reviewers and the scrupulous and authoritative editorial work of Hugh Brazier, and is dedicated to our families, who support our work, and to the children.

PVS

Intense debate persists about the terminology, clinical diagnosis, and criteria for decision making for patients in vegetative states. The acronym PVS technically refers to persistent vegetative state, but as noted by our authors “persistent” vegetative state typically becomes “permanent” vegetative state after a period of time, and diagnosis of the state cannot be absolutely certain. Various court cases in the USA have established parameters for bases on which to consider forgoing life-sustaining treatment and who has the moral (or legal) standing to make such decisions, but it is not the case in the USA, as it is in some other countries, that all such decisions must undergo judicial review. Support for patients in PVS involves patients, their families and friends, the organizations providing the care, the organizations funding the care, and the individual care providers, and while some cases proceed with little disagreement, as in this case, there is considerable opportunity for disagreement and ethical quandary.

There has been a spate of literature discussing the “minimally conscious” state, a description of patients for whom the criteria of PVS are not met. The medical discussion is bedeviled by the difficulty of drawing a bright line in a continuum of conscious states, and the ethical discussion by the inevitable fact that an argument for treating (or withdrawing) at any point on that continuum can equally well justify the same course of action for the case next to it on that continuum – a conundrum sometimes called the “slippery slope.”

“Futility” is one of the most controversial issues facing contemporary health care – both in theory and in application. The three cases in this section illustrate the difficulty faced in theory and practice.

The term itself can be confusing. The futility of a particular treatment may be evident in either quantitative or qualitative terms. That is, futility may refer to an improbability or unlikelihood of an event happening, an expression that is quasi-numeric, or to the quality of the event that treatment would produce. In the absence of specific objective criteria consistently applied across different diagnoses and settings, subjective judgments about what is appropriate in a specific case can and do clash. A treatment judged “futile” from one perspective is liable to be termed “desirable” or “necessary” by another participant or affected party: “You may think it is futile, but it does not seem futile to me.” Such conflicting reactions to a situation may reflect different formulations of the goals of treatment. One party may consider an intervention “futile” which only postpones death; another may find an extended time to resolve emotional or family issues priceless. The reliability of factual information cannot settle conflicts arising from these different value positions.

Even in cases where considerable outcomes research has generated probabilistic data about the likelihood of positive results for life-sustaining treatments such as cardiopulmonary resuscitation or mechanical ventilation under some medical conditions, the chance, however minimal, of postponing death can be of great psychological value to grieving parents.

American physicians and parents reading Roger Burne's moving account of the life and death of young William in Britain will be startled, I suspect, by the striking difference expected had a real-life drama of similar circumstances been enacted in the USA. When the parents and William said, in essence, “Enough!,” the unwritten moral code of professional behavior in Britain sanctioned their doctors' humane self-restraint, as well as the positive action taken by the doctors to make the necessary arrangements for the child to die at home. Moreover, the importance of family's private domain stands out prominently in the story from Burne's side of the Atlantic. The most crucial decisions taken by William's family took place on their own “turf.” Unlike too many situations in the USA, the family's deliberations in Britain did not take place in a court of law; and not in a hospital surrounded by well-meaning experts, who are, nonetheless, strangers.