This past fall (October 2005), my good friend and colleague Lewis Cohen, M.D., of Baystate Medical Center, helped organize a unique conference (cosponsored by the Smith College of Social Work) that represented an early attempt by psychosocial palliative care clinicians, ethicists, and legal experts to grapple with the issues raised by the Terri Schiavo case, which had so captured the attention of the nation and raised tremendous disagreement and debate. As editor-in-chief of Palliative & Supportive Care, I was, of course, quite thrilled when Dr. Cohen proposed the possibility of our journal publishing the main papers from this unique and timely conference. As the readers of Palliative & Supportive Care will recall, this journal has expressed the opinion that the case of Terri Schiavo represented a watershed event in palliative care practice and research (Breitbart, 2005), and we called for more research into the experience of patients who die of dehydration. Of course, the issues raised by the Schiavo case are so much broader and do, in fact, range from palliative care practice and research to ethics and spiritual issues to legal issues regarding decision making at the end of life.

In October of 2005, a two-day conference, “Controversies in End-of-Life Care: Terri Schiavo's Lessons,” was jointly sponsored by Baystate Medical Center and the Smith College School for Social Work. Both the conference and this special issue of the journal are prompted by recognition that the Schiavo case has clearly generated considerable national attention, and it consequently offers palliative medicine, social work, psychiatry, neurology, and allied disciplines a singular opportunity to reflect on our clinical practices and assumptions about the management of catastrophically ill individuals. At the core of the Schiavo case was a bitter family feud, but before it ended, it became a legal battle, a political fight, a disability rights issue, and a macabre media circus. It is heartbreaking that Congress held a midnight session about the health care of one irreparably brain-damaged woman, Terri Schiavo, while ignoring the health crisis of 40 million uninsured Americans (Friedman, 2005).

The recent events surrounding the case of Terri Schiavo have highlighted the moral implications of end-of-life care. Among the issues raised by Terri's parents against the withdrawal of her feeding tube was that doing so would be “euthanasia” and, as such, would violate their daughter's Roman Catholic religious beliefs. The emotionally charged rhetoric and the political posturing in this case drowned out both rational discourse and historical memory. Politicians and even a few bishops and cardinals were quick to join the parents in denouncing the removal of Terri Schiavo's feeding tube as “euthanasia” or “murder.” However, the interpretation of the Catholic position on the sanctity of life that led to that moral judgment is not in line with the centuries-long Catholic position on end-of-life care.

This article examines narratives of grief and loss and how, under the best of circumstances, they may lead to transformation and growth, even contributing to the greater social good. Using psychodynamic and narrative theories, and examples drawn from mourners who have used their grief in powerful and political ways, I make the case that even grief that has been highly appropriated and contested, as in the case of Terri Schiavo, may ultimately serve important functions. Grief may mobilize mourners by helping them to turn passivity into activity. Grief may mobilize higher-level defenses such as altruism. Grief and loss may lead to a mourner's desire to do for others what was not done for him or her. A necessary part of turning grief into social action is the creation of a coherent grief narrative—first personal and then political. This coherent narrative can be developed using clinical interventions as well. Hence I discuss the clinical implications of helping those who are grieving to create coherent narratives out of shattered assumptions in a process of personal and social change.

What would Terri Schiavo have wanted? That remains an unanswered question for many who followed the media frenzy that attended the extraordinary court and legislative battles that preceded her death 13 days after her feeding tube was removed for the last time. What would she have directed her physicians to do if she had “miraculously” regained capacity and awareness of the consequences of her cardiac arrest that left her in a persistent vegetative state? Who would she have wanted to make that decision for her if she were unable to do so? How are we to understand the meaning of statements that she purportedly made about life-sustaining treatments approximately 20 years ago, and how can we apply them to the current situation? This article reflects on those questions from the perspective of two small exploratory studies. These studies considered the meanings and interpretation of statements by terminally ill patients concerning desire for hastened death and the relevance of previously made statements to their current clinical situation.

The case of Terri Schiavo resulted in substantial media attention about the use of artificial nutrition and hydration (ANH) especially by percutaneous endoscopic gastrostomy (PEG). In this article, I review ethical and legal principles governing decisions to choose or forgo ANH at the end of life, including issues of autonomy and decision-making capacity, similarities and differences between ANH and other medical treatments, the role of proxies when patients lack decision-making capacity, and the equivalence of withholding and withdrawing treatment. Evidence for palliative or life-sustaining benefits for ANH are reviewed in three disease processes: amyotrophic lateral sclerosis (ALS), cancer, and dementias, including Alzheimer's disease. Although more recent studies suggest a possible palliative role for ANH in ALS and terminal cancer, feeding tubes do not appear to prolong survival or increase comfort in advanced dementia of the Alzheimer's type.

The article explores the individual patient's right to refuse, withdraw, or insist on medical treatment where there is conflict over these issues involving health care personnel or institutions, family members, legal requirements, or third parties concerned with public policy or religious/ideological/political interests. Issues of physician assistance in dying and medical futility are considered. The basis and the current legal status of these rights is examined, and it is concluded that threats to the autonomy of patients, to the privacy of the doctor/patient relationship, and to the quality of medical care should be taken seriously by individuals, medical practitioners, and others concerned with developing and maintaining reasonable, effective, and ethical health care policy.

Objective: To describe elderly-specific issues in end-of-life care.

Methods: Literature review and case examples.

Results: There is great heterogeneity in elderly patients' responses to end-of-life care.

Significance of results: Developmental and individual issues need to be considered in end-of-life discussions.

The precise circumstances of Theresa Schiavo's disability, the reasons advanced for preserving and ending her life and the covert personal agendas and unacknowledged political-economic forces that may have significantly affected the outcome were investigated and are presented.

In this article, I attempt to untangle some of the cultural, philosophical, and ethical currents that informed the Schiavo case. My objective is to better apprehend what the Schiavo case means for end-of-life care in general and to assert that our discourse about the ethical issues attendant to brain injury will be impoverished if we limit our discussions about disorders of consciousness solely to the vegetative state. If we ignore emerging developments in neuroscience that are helping to elucidate the nature of these disorders and fail to broaden the conversation about brain injury, beyond the unmitigated futility of the permanent vegetative state, we will imperil others who might improve and be helped. Through such efforts we can help mitigate the tragedy of the Schiavo case and overcome the rhetoric that marked the national discourse in March 2005. Once the complexity of disorders of consciousness is appreciated, rhetorical statements about a right to die or a right to life are exposed as being incompatible with the challenge of providing care to such patients. This is especially true as neuroscience brings greater diagnostic refinement to their assessment and management, a topic addressed in this article, which specifically focuses on the clinical and ethical implications of the recently described minimally conscious state. Instead of staking out ideological positions that do not meet the needs of patients or families, we should strive to both preserve the right to die for those who are beyond hope while affirming the right to care to those who might benefit from coming advances in neuroscience. If we can achieve that delicate balance, we will be able to transcend the partisan debate that shrouded the life and death of Theresa Marie Schiavo and begin to articulate a palliative neuroethics of care for those touched by severe brain injury and disorders of consciousness.

Objective: This research explores the potential benefit of a spiritual pain assessment sheet to clinical practice. With spiritual pain defined as “pain caused by extinction of the being and meaning of the self,” the spiritual pain assessment sheet was developed by Hisayuki Murata from his conceptual framework reflecting the three dimensions of a human being as a being founded on temporality, a being in relationship, and a being with autonomy. The assessment sheet was developed from reviews of the literature and examinations from a philosophical perspective on the structure of spiritual pain.

Methods: Patients admitted to palliative care units in Japan were interviewed using the assessment sheet. The responses were analyzed qualitatively. The usefulness of the assessment sheet and the burden placed on the patients by its use were also investigated.

Results: The spiritual pain elucidated by the assessment sheet was the same as that revealed in the earlier research of Morita. The patients reported that they did not find the use of the assessment sheet a burden, and more than half reported that it was useful. The burden of the assessment sheet on the subjects was thus determined to be low. Positive feedback on the assessment sheet was also received from the nurses who conducted the patient interviews, who said the assessment sheet made it easier to talk with the patients about their spiritual pain.

Significance of research: The research results indicate that the spiritual pain assessment sheet provided an appropriate assessment of spiritual pain among terminal cancer patients, showing that such a sheet could be used as an assessment tool in the future.

Objective: The aim of this research was to reveal, from the perspective of the “lived experience” shared by cancer patients and their nurses, how patients facing death create lived experience in the context of palliative care. This research also aims to elucidate the meaning nurses find in patients' experiences while caring for their patients.

Methods: The participants in this study were cancer patients who were given opportunities to discuss events and concerns in their daily lives, with the interactions guided by the researchers. Transcriptions of conversations with the patients were analyzed using the method for empirical data classification set forth by Giorgi (1985) with appropriate modification.

Results: This study found that when the nurse correctly interprets the meaning of the concerns (Heidegger, 1962) of the patient facing death and shares that meaning with the patient, fundamental questions naturally arise for the patient. Answering these questions becomes possible only through interactions that require the reexamination of the values of the patient and the nurse.

Significance of research: This research elucidates the spiritual pain experienced by cancer patients and discusses opportunities for nurses to address the spiritual care of these patients.

Palliative care clinicians are often challenged in this evidence-based world to find studies that are generalizable to our population. And yet, there is much to be learned from the unique situations that we encounter. This narrative reflects upon the application of palliative principles to one special rat model.

Clinical update: Literature abstracts.

Calendar of events.