Abstract
Over the past 30 years, and increasingly over the past decade, palliative care services characteristically address the complexity of communication, decision making, and management of end-of-life issues for patients and families of all ages. Clinical ethics services have a parallel 30-plus year history in the United States—so much so that some have offered that clinical ethics has “cut its teeth” on issues attendant to the beginning and end of life. The authors propose considerations necessary in determining the appropriateness of consultation with palliative care, clinical ethics, or both, and when either may be necessary but perhaps not sufficient for patient and family management. A resolution for any encountered tension and identification of common or overlapping domains for both consultants is presented.
Introduction
Perhaps the greatest challenge to considering when and which consultant to call, ethics or palliative care, lies with the march of technology and hope for miracles. Our culture celebrates advances in medicine and relishes in the feel good stories of lives saved and death thwarted. It is only when one stops to consider, “just because we can, should we?” or to accept that death is a part of life do we consider seeking help from either ethics or palliative care. In our successful endeavors to prevent untimely death, some have confused an acceptance of our mortality as losing hope or giving up.
Ethics is both personal and professional. Rather than view an ethics consultation as offering help through value-laden complex situations, some may mistakenly perceive this resources as one of last resort, to be used only when someone behaves badly. Likewise, experienced health care professionals care deeply about their patients and are committed to their care even when the patient is not expected to survive. Rather than view a palliative care consultation as assistance in sometimes complex symptom management, some view a request for palliative care as a sign they do not care enough about their patients. In reality, both ethics and palliative care are about more than death and dying.
Asking for a Consultant to Visit
Asking for a consultant to assist in a difficult case is often prompted by a perception that the consultant brings to the process “fresh eyes,” additional ears, and an inclination to hear what the clinical team may have missed—perhaps best facilitated by affording a relative luxury of time to listen—and thereby offer new considerations, insights, and even innovative measures to develop a way through or a way out of a difficult position. 1 Can a seemingly impossible situation, perhaps a real ethical dilemma, be worked through? Are there new insights to consider? Can a new, third way out of the formerly ascribed dilemma be evolved and negotiated?
In seeking an ethics consultation, the ethicist may be viewed as an outsider—separate from the clinical team. 2 She may be sought as a means to accomplish an elucidation or clarification of values at stake, provide a relatively neutral facilitation of communication among the clinical team and between the clinical team and the patient and/or family, or to offer recommended actions—even the acquisition of more facts (clinical, social, relational, and other) before making any definitive recommendations.
A palliative care consultant may be sought as more of a (clinical) insider as she may bring a more clinically oriented second opinion to the clinical team. 3 Perhaps this is through a process that is more focused on managing difficult symptoms in the often complex and nuanced terminal trajectories of life-limiting illnesses, or through a more holistic approach in reaching beyond the strictly clinical considerations of symptom management and addressing a more robust provision of psychosocial, spiritual, ethical, and relational needs across care environments (eg, an ICU, inpatient unit, or home health/hospice setting). This notion of the palliative care consultant being a clinical insider is not universally held, as many intensivists may not consider her as always being welcome in the intensive care unit (ICU). 4 Some clinicians are considerate of their own practice and ethos that leads them toward continuous, longitudinal care throughout a disease trajectory and even through the end of their patient’s life. 3 For some intensivists, oncologists, and others requesting a palliative care consult is synonymous to “consulting out death” and approaches patient abandonment.3,5
The requesting clinical team may want to consider a number of other questions when weighing the potential value of a consultant’s assistance in a given case. Can consultants hear what is being asked—or hear more? Is the consultant open to the needs of the team or does he come with a “canned” approach, a predictable framework, a readily identifiable menu of limited prescriptions for intervention? In essence, how good is this consultant at listening? Can consultants see what is being done? Are they sufficiently adept at understanding clinical realities, the manifold relational dynamics, and value-laden actions or inactions that transpire in the course of care daily or over time? Can they see the path that is being followed? Where it may lead? Or see, and share, an alternative path? Can consultants speak to these and other matters? Can they reflect upon the present concerns, the path being followed, the values at stake and the individuals, or groups, involved in the care of complex cases? Can they speak to the issues, address real persons, engage in the banter of discourse over and over again, and offer words that are incisive when needed, balanced, and responsive to the needs of the clinical team and patient/family—be it suggestive or directive, and a balm when required? Is their voice heard, valued, and engaged in ongoing discourse? Finally, can consultants—through the processes outlined here—touch those involved in a difficult case in such a manner as to facilitate listening, learning, reflection, and future care considerations? Is their impact lasting?
Things That Affect the Request for a Consult
The history and culture of any given unit of care—be it a long-term care facility, an ICU in an academic medical center, or a general inpatient unit in a community hospital—will affect the inclination to ask for a consult and the likely response to a consultant when she visits. Institutions may wear their history and culture on their edifices: a faith-based hospital is known to the public, likewise an academic medical center. But within each center, individual units have their own identities, histories, and cultures: “It was in this ICU that Doctor So-and-So first pioneered this treatment” and “Our approach is to never give up” or “We care always, even when we cannot cure.” Within 1 institution, a given unit may be more—or less—inclined to ask for a consultation. Of course, the history and perceived culture of the ethics or palliative care consultation service also will affect the inclination of a clinical team to request either or both, consultants. Was the ethics service thrust upon them? Mandated by administrative procedural means? Or did clinicians have a hand in its evolution and gradual acceptance as normative in practice? Is the palliative care consultant valued and respected as an individual? Does she have real support and bring tangible goods to the bedside or represent a hospital’s hollow effort to meet a need?
The prevailing philosophy of care will also affect a unit’s, or individual clinician’s, inclination for seeking a consultation through an ethics or palliative care service. An individual clinician’s sense of ownership, responsibility, and accountability will move him or her to consult either service or perhaps try to manage on his or her own. This may be problematic if the resultant patient care is perceived to be suboptimal and clinical team members raise issues of angst in not adequately meeting patient and family needs. Such perceptions and realities have largely contributed to the evolution of palliative care services in acute care hospitals—even where good ethics services may have already existed—as the clinical realities of end-of-life care drove change advocated by nurses, ethicists, administrators, the public, and some physicians.
Finally, interpersonal relationships may shape the inclination to consult, and to value, consider, or respond to consultants’ offerings as previously noted. 6 Even a successful close interpersonal relationship may be strained in an ethically challenging situation, or one where patient suffering is obvious.
How did We Get to This Point?
In many ways, the “success stories” of clinical ethics have driven care toward a necessary provision of both good ethics services and the presence of in-patient palliative care teams. The mandate for ethics resources has a rich history spanning over 40 years in the United States and is beyond the scope of this article, but it is evident through well-publicized cases, legal actions, and administrative steps that have included processes for accreditation of clinical services and clinician education.1,7 The maturation of hospice care over the past 30 years has also affected a public expectation of care at the end of life and was even the focus of many inpatient clinical ethics services over the past 25 years in the United States. Not surprisingly, then, the evolution of inpatient palliative care teams followed and is now an increasing reality in both adult and pediatric hospitals. Health care professional staffs in and out of the ICU, society in general, and families in particular now expect that care at the end of life can be “better”—less fraught with pain, invasive procedures, isolation, and altered consciousness.1,7
What Difference Does it Make Who I Consult?
According to the American Society for Bioethics and Humanities (ASBH), an ethics service is provided by an individual or group to help patients, families, surrogates, and health care providers address uncertainty or conflict regarding value-laden concerns that emerge in health care. 8 Ethics consultation is quite often necessary but may not always be sufficient in addressing palliative care matters for patients, families, and staff. An ethics consultation may help individuals explore their moral sensitivity and insight into the ethical consequences of decisions about patient care.
As noted by the National Consensus Project (NCP) in 2004, The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, and helping with decision making, and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.
9
Major domains of palliative care (adapted from Ferrel 10 ).
In reality, there are both parallel, and intersecting, domains of palliative care and clinical ethics that should be considered in determining which consultant may be best in a clinical situation—or when it is best to consult both (Table 1 ). It remains the realm of the clinical team to determine whether there is likely to be additional benefit derived from a palliative care consultation—but this should be an informed determination. Whereas ethics consultants have become normative in US hospitals, palliative care consultants have yet to accomplish this.1–3 One must consider if these are distinctive or merely complementary processes?
Parallel and Intersecting Domains of Palliative Care and Ethics
An Approach to Deciding
Today’s clinical environment is at once more informed and more replete with health care professionals of varied expertise and specialty than ever before. It stands upon a history of collaborative processes and the evolution for physician-ordered and physician or nurse-provided care to care teams comprised of numerous disciplines all intent upon bringing safe, effective, efficient, and evidence-based care that is of good quality and mutually decided upon by informed patients and families who may be assisted in difficult decision making by patient advocates and ethicists. Both patients (and families) and clinical staffs have come to expect excellence. In this setting, consideration of both palliative care and ethics as separate and distinct, albeit complementary resources, defines excellence. Alone, neither can suffice.1,3,11
Historically, the role of the ethics consultant has been focused on values clarification and decision making within the narrative of the patient and family. 2 Typically, an ethics question has been framed in a manner of “appropriateness.” What should be done? In contrast, attention to alternative treatments, the limits of conventional or complementary treatments, and a redirection of clinical goals—as well as specific actions and symptom management, meaningfulness of certain options, and support for the patient and family through the end of life and into bereavement, while informed by ethical deliberation—remains the purview of palliative care consultants who hold expertise in these matters.7,10
Among the determinants in deciding who to call, the nature of the case, the expectations of those seeking help, and the models of consultation used by either the ethics or palliative care consultants may affect a clinical team’s decision. In the view of the authors, cases that typically result in neither consultant alone being sufficient include those in which high stakes exist (eg, forgoing life-sustaining treatments), those cases representing very long hospital stays (as opposed to those focused upon care of the imminently dying) and those in which a breakdown of therapeutic alliances have occurred, or when efforts to negotiate and agree upon the goals of care are failing. In some instances, both consultants may prove helpful in assisting the clinical team in managing patients or family members who are best described as controlling, assertive, aggressive, or demanding. These cases are often associated with moral distress—a sense that one knows the ethically correct thing to do but is prevented from acting on the perceived obligation. 12 At the core of these cases is the desire to respect the patient (autonomy), patient suffering and perceptions of an obligation of beneficence (to do good), and when the case involves considerations of scarce resources, concerns about justice.
The ethicist, who is not and will not be directly responsible for clinical care of the patient may offer a neutral opportunity for patients, families, and team members to explore difficult choices with no expectation of impact on the immediate care of the patient. This is particularly helpful in instances when key stakeholders are engaged in discussions of what might be deemed inappropriate or futile care, and discord exists around refusals to cease treatments (including life-support therapies such as dialysis, assisted ventilation, among others). Kopelman has nicely described a number of operative reasons why families may insist on such measures, even when the clinical team, and consultants, may believe they are inappropriate, burdensome, or fraught with attendant suffering. 13 The ethicist in such cases may serve as a way to give permission to stop trying to do everything to save a life and consider comfort rather than cure as a focus. In cases such as these, the moral angst often continues as care of the patient moves forward and the added support of a palliative care expert is invaluable.
In an effort to illuminate this process of clarifying, and deciding when the clinician should consult either or both services, the following questions require address3,11: Does the case fall within the well-recognized scope of palliative care, or more broadly encompass ethical matters such as value conflicts or prognostic uncertainty? What specific assistance is needed by clinicians involved in the case? Is there a need for more holistic and supportive care providers? Is a second clinical opinion sought? Is it necessary to illuminate the goals of care or to redirect them through a transition toward quality-of-life ensuring but not necessarily cure-oriented goals? Is there a desire to transfer care to an alternate care team, perhaps a palliative care team or placement under home or inpatient resident hospice care? Is the real need for the team to obtain a facilitator of communication within the team or between the team and the patient/family? Is assistance in the decisional process, or mediation amid value tensions, needed? Proven expertise in communication may be found in both consultants, but what is the end desired by the clinical team with such communication? What sense do clinicians have that the patient or family may perceive either consultant as acceptable or desirous—or not?
Patients, families, and caregivers (both professional and lay) faced with tragic and unexpected, or long anticipated yet anxiety-provoking terminal care all stand to benefit from excellence in clinical care that is evidence-based, robust, and holistic—addressing the whole person (patient), as well as the patient in the family and the family in the patient. To this end, Wanzer’s words expressed over 20 years ago are worthy of the clinician’s rereading:
As sickness progresses toward death, measures to minimize suffering should be intensified. Dying patients require palliative care of an intensity that rivals even that of curative efforts … even though aggressive curative techniques are no longer indicated, professionals and families are still called on to use intensive measures—extreme responsibility, extraordinary sensitivity, and heroic compassion.
14
Ethicists are architects of moral space within the health care setting, as well as mediators in the conversations taking place within that space.
15
Footnotes
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The author(s) received no financial support for the research, authorship, and/or publication of this article.