How End-of-Life Blogs Re-Affirm the “Power to be Oneself”

Powerlessness generally denotes loss of control and may be experienced among those with a terminal diagnosis and, as such, empowerment is a dominant discourse in end-of-life policy in the western Anglo-Saxon world. This paper analyzes thematically blogs authored by three people with a terminal diagnosis to examine the “power to be oneself,” a concept which was identified in the “Ethics of Powerlessness” project conducted in the UK. The analysis demonstrates that the bloggers assert the “power to be themselves” which is expressed in three principal ways. Firstly, through assertion of agency to promote self-affirmation and control. Secondly, through claiming a “moral authority” expressed by providing advice not just on illness and death but also on how life should be lived. Thirdly, through discussing ideas about the future and creating a legacy. The blogs are a mechanism used to express and reinforce self-identity and to carve out a “sacred space” between life and death to nurture personal change and to project this onto a public arena. This analysis demonstrates the key role patient empowerment plays in constructing an identity with a terminal diagnosis, an element that is often overlooked in end-of-life policy.

Fostering medical staff reflection on the technological alienation of parents in the NICU

We describe a case of parents refusing a tracheostomy for an otherwise healthy newborn. The refusal was not honored because permitting the refusal would have violated state law, which required a child to have a qualifying condition (e.g. a terminal diagnosis, permanent unconsciousness, incurable condition with severe suffering) to remove or withhold life-sustaining treatment. However, this case strained the relationship between the parents and medical staff, who worried about sending the newborn home with a tracheostomy where she was not wanted. While many ethical issues arise in treatment refusal cases like this, we focus on the opportunity for ethicists to help the medical staff reflect on the technological alienation of the parents, which may help foster empathy, reduce moral distress, and strengthen the quality of the doctor-parent-patient triad.

Communicating Bad News to Older Patients from the Physician’s Point of View: Focus on the Influence of Gender and Length of Work Experience

<b><i>Background:</i></b> Communicating bad news is of great interest in the geriatric field, but few works have considered the physician’s point of view in this regard. <b><i>Objectives:</i></b> The aim of this study was to explore possible differences related to physicians’ gender and work experience in how a terminal diagnosis is disclosed to older patients. <b><i>Methods:</i></b> Study participants were 420 Italian physicians (277 M, 143 F) working in clinical medicine (58.2%), surgery (33.3%), or other medical departments (8.5%). They completed an anonymous multiple-choice questionnaire that investigated various issues associated with communicating bad news to terminally ill older patients. <b><i>Results:</i></b> Men had more work experience than women (55.6% vs. 44.8% had worked for ≥23 years) and were more likely to work in surgery departments, while more women worked in clinical medicine. Most physicians declared that terminally ill older patients, if mentally competent, should always (14.4%) or generally (64.3%) be directly and openly informed of their condition. With no difference in gender, length of work experience, or specialty area, 36.9% of physicians thought that this was a human right and 18% that it would improve the patient’s quality of life. Where older patients were alone, male physicians were more likely than female (30.2% vs. 8.9%) to always communicate bad news directly to them. More than 70% of physicians, especially those with longer work experience, declared that they always or often took enough time to inform the patient. Female physicians and those working in clinical medicine were more likely to need psychological help when deciding to break bad news, but only a smaller proportion declared to have received it. <b><i>Conclusions:</i></b> Gender and work experience may influence how physicians communicate with patients and how often they seek psychological support.

QOLP-06. THE CHALLENGE OF FACING A NEW MALIGNANT GLIOMA DIAGNOSIS: PATIENT EXPERIENCES LEARNING ABOUT THEIR ILLNESS AND COMMUNICATING WITH THEIR PROVIDERS IN THE NEURO-ONCOLOGY CLINIC

BACKGROUND Patients with newly diagnosed malignant gliomas (MG) face the sudden and unexpected news that they have a terminal neurological illness. However, little is known about these patients’ experiences learning about their illness and communicating with their oncology providers. METHODS We conducted semi-structured interviews with patients with MG who had recently completed chemoradiation, to explore patient-clinician communication and evaluate how patients process information about their diagnosis. We excluded patients with marked cognitive dysfunction, with eligible patients required to have a Mini-Mental Status Exam score of 24/30 or greater. We terminated enrollment once we reached thematic saturation, after a total of 9 patient interviews. We thematically analyzed qualitative data to describe patterns common to the patients’ experiences. RESULTS Most patients were male (6/9, 66.7%), with median age of 55 years (range 26-72) and had a diagnosis of glioblastoma (6/9, 66.7%). The majority of patients described a positive experience communicating with their providers, noting that information was delivered clearly, and visits were not rushed. Despite this, patients found it difficult to absorb and process the large volume of new information, particularly in the setting of their shock and dismay about the diagnosis and their ongoing neurological deficits. Emergent themes included concerns about the impact of the disease on their loved ones, struggles in coping with uncertainty, and worries about preserving their quality of life and functioning. Additionally, patients described their efforts to balance their knowledge about their poor prognosis with their desire to maintain hope, with many patients expressing a goal to “beat the odds” or exceed expectations with respect to their survival. CONCLUSION Although patients with newly diagnosed MG describe effective communication with their providers, they face many challenges coping with their terminal diagnosis. Supportive interventions aimed at this population are needed.

Cicely Saunders, ‘Total Pain’ and emotional evidence at the end of life

In this article I explore how Cicely Saunders championed the hospice movement and initiated what became palliative care by representing her emotional connections with others. She became friends (and, once or twice, fell in love) with dying patients and encouraged others to follow her example in listening to patients’ descriptions of pain. Her approach was radical at a time when she believed doctors routinely ‘deserted’ dying patients because it urged them to understand another’s embodied pain as inextricably bound up with the emotional impact of a terminal diagnosis. Saunders’ attention to how patients expressed their experience is summed up in her term ‘total pain’, which communicates how an individual’s pain is a whole overwhelming experience, not only physical but also emotional, social and spiritual. Previous research frames ‘total pain’ in terms of narrative, emphasising Saunders’ focus on listening to her patients and her use of narratives as evidence in advocating for cultural and institutional change, both of which I understand as engaging with a patient’s emotional reality. However, as Saunders’ ideals become mainstreamed as palliative care and amid calls for ‘narrative palliative care’, I use evidence from Saunders’ extensive written output alongside archival material to suggest that, just as palliative care is by its nature not a single specific intervention, ‘total pain’ should not be understood as simply narrative. Building on existing work in this journal questioning the primacy of conventional understandings of narrative in the medical humanities, I demonstrate how Saunders’ prominent use of fragments and soundbites alongside longer case narratives demonstrates the limits of narrative, particularly when someone is dying. Saunders thus offers a case study for considering the implications that questioning the primacy of narrative as emotional evidence might have for our understandings of how empathy or advocacy can function, or be cultivated, in medical settings.

Systematic Analysis of Extracting Data on Advance Directives from Patient Electronic Health Records (EHR) in Terminal Oncology Patients

Background: Advance directives are legal documents that include living wills and durable health care power of attorney documents. They are critical components of care for seriously ill patients which are designed to be implemented when a patient is terminally ill and incapacitated. We sought to evaluate potential reasons for why advance directives were not appropriately implemented, by reviewing the electronic health record (EHR) in patients with terminal cancer. Methods: A retrospective analysis of the EHR of 500 cancer patients from 1/1/2013 to 12/31/2016 was performed. Data points were manually collected and entered in a central database. Results: Of the 500 patients, 160 (32%) had an advance directive (AD). The most common clinical terminology used by physicians indicating a terminal diagnosis was progressive (36.6%) and palliative (31%). The most common clinical terminology indicating incapacity was altered mental status (25.6%), and not oriented (14%). 34 (6.8%) patients met all criteria of having a terminal diagnosis, a documented AD, and were deemed incapacitated. Of these patients who met all of these data points, their ADs were implemented on average 1.7 days (SD: 4.4 days) after which they should have been. This resulted in a total of 58 days of additional care provided. Discussion: This study provided insight on to how ADs are managed in day to day practice in the hospital. From our analysis it appears that physicians are able to identify when a patient is terminal, however, it is typically later than it should have been recognized. Further studies should be performed focusing on harnessing the power of the EHR and providing physicians formative and evaluative feedback of practice patterns to ensure that ADs are honored when appropriate.

Effective Ways of Breaking Bad News in Terminal Ill Diagnosis: Focus on Strategies

In terminal diagnosis breaking bad news is one of the most difficult tasks for every clinicians working in the palliative endof-life care, but a must in its clinical practices. It requires special skills and the ability to deliver the bad news without hurting the sentiment of the patient and the loved ones. Many clinicians working in the palliative care are incompetent in handling the process of delivering the bad news, mainly due to the lack of effective communication skills and sometime were preoccupied with fear and nervousness. A time of breaking bad news is consider to the most crucial moment where the dying individuals are mostly accompanied with several negative feelings and emotional breakdown, which require a well structure manner and well design techniques to put forward. Yet little of its skills and techniques are known among the medical practitioners as a whole in their medical curriculum during their training period. Delivering bad news requires clinicians advance preparations on how much information the patient and the family would like to acquire, quality therapeutic relationship, and emotionally well prepared. The challenges lies in breaking bad news an important domain in terminal diagnosis, but the clinicians are mostly not aware on how, when, and where to deliver in its clinical practices that usually creates a communication gap between the clinicians and the patient.

Novel therapies are changing treatment paradigms in metastatic prostate cancer

Metastatic castration-resistant prostate cancer (mCRPC) remains a terminal diagnosis with an aggressive disease course despite currently approved therapeutics. The recent successful development of poly ADP-ribose polymerase (PARP) inhibitors for patients with mCRPC and mutations in DNA damage repair genes has added to the treatment armamentarium and improved personalized treatments for prostate cancer. Other promising therapeutic agents currently in clinical development include the radiotherapeutic 177-lutetium-prostate-specific membrane antigen (PSMA)-617 targeting PSMA-expressing prostate cancer and combinations of immunotherapy with currently effective treatment options for prostate cancer. Herein, we have highlighted the progress in systemic treatments for mCRPC and the promising agents currently in ongoing clinical trials.

Systematic analysis of extracting data on advance directives from patient electronic health records in terminal oncology patients.

e24011 Background: Advanced care planning and living wills are critical components of caring for patients at the end of their lives. Advance directives are designed to be implemented when a patient meets the legal definition of terminal and is deemed incapacitated. By reviewing the electronic health record (EHR) in patients with terminal cancer, we sought to evaluate whether advance directives were appropriately implemented. Methods: A retrospective analysis of the EHR of 500 cancer patients from 1/1/2013 to 12/31/2016 was performed. Data points were manually collected and entered in a central database, and data analysis was completed using SAS. Results: Of the 500 patients, 160 (32%) had an advance directive (AD). The most common clinical terminology used by physicians indicating a terminal diagnosis was “progressive” (36.6%) and “palliative” (31%). The most common clinical terminology indicating incapacity was “altered mental status” (25.6%), and “not oriented” (14%). 34 patients (6.8%) met all criteria of having a terminal diagnosis, a documented AD, and deemed incapacitated. Of these patients who met all of these data points, their ADs were implemented on average 1.7 days (SD: 4.4 days) after which they should have been. This resulted in a total of 58 days of additional care provided to these patients. Conclusions: End-of-life care is a challenging albeit vital part of the practice of medicine. This study provided insight on to how ADs are managed in day to day practice in a hospital. From our analysis, it is clear that physicians are able to identify when a patient is terminal; however, it is typically later than it should have been recognized (and thereby, leading to delays in the implementation of the patient’s AD). Further studies should be performed focusing on harnessing the power of the EHR and providing physicians formative and evaluative feedback of practice patterns to ensure that ADs are honored when appropriate.

Exploring the Connection Between End-of-Life Relational Communication and Personal Growth After the Death of a Loved One

The purpose of the current investigation was to examine associations between final conversations (FCs; i.e., relational communication with a terminally ill individual from the moment of terminal diagnosis to death) with the outcome of personal growth (PG). A total of 236 individuals who had previously engaged in FCs with a deceased loved one participated in an online survey. Analyses revealed significant, positive associations between the six FCs factors (i.e., messages of love, messages of spirituality/religion, messages of identity, everyday talk and routine interactions, difficult relationship talk, and instrumental death talk) with the PG factors. Implications are discussed along with limitations and future directions.