Robert P. Shannon

Training mid-level providers on palliative care: bringing advanced directives and symptom assessment and management to community oncology practices.

Palliative care services are not available in most outpatient oncology practices. A program training 11 mid-level providers from oncology practices on advanced directive discussions and supportive symptom assessment and management performed by palliative care specialists was completed. A follow-up session 9 months later identified barriers to implementation. Of the 11 mid-level providers, 8 participated in the follow-up session, and 9 of the 11 providers implemented advanced directive’s discussions and symptom assessment and management for patients with metastatic cancer. Main barriers included uncertainties about reimbursement, patients’ lack of knowledge about palliative care, and lack of access to supportive services. This program successfully promoted advanced directive discussions and supportive/palliative care symptom assessment and management to community oncology practices, which will hopefully translate into improved quality of life for patients with metastatic cancer.

Training Mid-level Providers on Palliative Care

Palliative care services are not available in most outpatient oncology practices. A program training 11 mid-level providers from oncology practices on advanced directive discussions and supportive symptom assessment and management performed by palliative care specialists was completed. A follow-up session 9 months later identified barriers to implementation. Of the 11 mid-level providers, 8 participated in the follow-up session, and 9 of the 11 providers implemented advanced directive’s discussions and symptom assessment and management for patients with metastatic cancer. Main barriers included uncertainties about reimbursement, patients’ lack of knowledge about palliative care, and lack of access to supportive services. This program successfully promoted advanced directive discussions and supportive/palliative care symptom assessment and management to community oncology practices, which will hopefully translate into improved quality of life for patients with metastatic cancer.

Patient-reported distress and survival among patients receiving definitive radiation therapy

Objective Patient-reported distress (PRD) has not been well assessed in association with survival after radiation therapy (RT). The aims of this study were to evaluate the association between PRD level and survival after definitive RT and to identify the main causes of distress in definitive RT patients. Methods and materials A total of 678 consecutive patients receiving definitive RT at our institution from April 2012 through May 2015 were included. All patients answered a PRD questionnaire that contained 30 items related to possible causes of distress, which could be rated from 1 (no distress) to 5 (high distress). Additionally, patients were asked to rate their overall distress level from 0 (no distress) to 10 (extreme distress). This overall distress level was our primary patient-reported distress measure and was examined as a continuous variable and as a categorical variable with 3 PRD levels (low, 0-3 [n = 295]; moderate, 4-6 [n = 222]; and high, 7-10 [n = 161]). Results As a continuous variable in multivariable Cox regression analysis, a higher overall PRD level was associated with poorer survival after RT (hazard ratio [HR], 1.39; P = .004). As a categorical variable, compared with patients with low distress, survival was poorer for patients with moderate distress (HR, 1.62; P = .038) or high distress (HR, 1.49; P = .12), but the latter difference was not significant. When the moderate and high distress levels were combined, survival was significantly poorer compared with the low distress level (HR, 1.57; P = .034). The top 5 specific causes of distress that patients mentioned were “How I feel during treatment,” “Fatigue,” “Out-of-pocket medical costs,” “Pain that affects my daily functioning,” and “Sleep difficulties.” Conclusions PRD before or during RT is a prognostic factor associated with decreased survival. Distress screening guidelines and interventions should be implemented for patients receiving definitive RT.

Palliative Care in Cirrhosis

The families and patients with end-stage liver disease (ESLD) confront physical and emotional challenges that are not frequently addressed by health-care providers. Palliative care emphasizes the assessment, anticipation, and alleviation of suffering in patients dying from the complications of cirrhosis in a holistic, patient-centered and family-focused manner. This chapter reviews the application of palliative care principles to patients with ESLD and the management of specific complications in the terminally ill patient.

Nonpharmacologic Management Strategies in ALS #300.

A myotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disorder leading to weakness, spasticity, and incoordination of the muscles involved in speaking, swallowing, breathing, and ambulation. Currently there is no cure for ALS, and the disease progresses inexorably toward death. Despite the lack of cure there are available treatments that can improve quality of life. This Fast Fact will discuss nonpharmacologic therapies for common challenges faced by ALS patients. See Fast Fact #301 for pharmacologic therapies and Fast Fact #299 for management of sialorrhea specifically.

The Reverend: Waiting for a Miracle

There I was at his bedside, surrounded by his family. Somehow naturally, we had fallen into the shape of a circle around his bed; he at the center, as it should be. As I acknowledged my place in the room, I couldn’t help but notice the stark contrast between ‘‘them’’ and me. Admittedly, I am slightly intimidated, with my youthful appearance and pale white skin. This is an African-American family and the patient is a well-known, accomplished Pentecostal Reverend. I can’t help but think that they probably don’t trust me from the onset. They must think we are too different—‘‘How could I possibly help them?’’ But I know regardless of our apparent differences I have something to offer them. Certainly, our time together will not be as simple as black and white. He was struggling to breathe; yet, able to speak clearly. His eyes were dark, deep, and gentle. His physician requested a palliative medicine consultation to assist the patient and family in clarifying treatment goals. His metastatic lung cancer had worsened, compounding the underlying presumed radiation pneumonitis and pneumonia. They heard us say, ‘‘There is unlikely to be any recovery.’’ Yet, they are unequivocal in their hope for a cure and recovery through prayer, as they wait for a miracle. I think, ‘‘Who are we to argue that?’’ He is clear he does not want to be intubated on a ventilator, but still wants cardiac resuscitation, despite the poor prognosis; therefore, his code status is changed to ‘‘DNI.’’ They also agree to morphine for his comfort. This makes me feel that at least we have accomplished something in the direction of allowing us (the doctors) to ‘‘do no harm.’’ But this is not about me; it’s about him.their father, husband, and preacher. I am here to support and serve, not to make decisions for them. With this initial consultation, I set forth my promise to remain honest and to be present. My role, as a palliative physician, is to guide, to offer choices of treatment plans and help them to stay the course when times get scary. I know, regardless of the path they choose, all roads will lead him home, and by ‘‘home’’ I mean death. His wife became more tearful as we discussed options, including hospice, so I decided to leave them to process, ponder, and pray. Over the course of several days, his respiratory distress worsened until eventually, we arrived at the inevitable critical crossroad. They chose BiPap for the respiratory distress. Then, they also asked for intravenous vitamin C infusion, dextrose, steroids, and ‘‘alkaline water’’ infusions. I saw their request as a desperate attempt to try anything to thwart the inevitable. His wife struggled with ‘‘letting him go,’’ because she felt that ‘‘God has not told her yet that it is his time.’’ Our Chaplain advises her to pray for that sign and the guidance she was seeking from her Lord. I knew, and maybe she knew too, decisions were being made about his fate, despite her hesitation. He was moving down his path, closer to home and we could not stop him; he was still on BiPap, with shallow rapid respirations–even more tachypnic than I wanted. I wanted to increase his morphine, to make him more comfortable; yet, I knew the family was hesitant because they wanted to try these ‘‘last attempts’’ as they waited for their miracle. I leaned near to examine him with his BiPap in place, noisily forcing air into a chest cavity constricted with disease; it was loud and distracting. I whispered in his ear, ‘‘Good afternoon, Reverend. It’s Dr. Nation. Open your eyes for me.’’ And he did—weakly, but he did it. His eyes were just as dark and deep as I remembered; yet, they spoke to me differently that day. He was suffering. Tired, he struggled to keep his eyes open. As I rested my stethoscope onto his chest, I listened to the rattling and restriction. But my stethoscope with my open hand on his bare chest was just a ruse; I really didn’t care how his heart or lungs sounded; I needed to touch him, to speak to him without words. Silently, I recited to him a favorite Psalm, 116:7: ‘‘Be at rest once more, O my soul, for the Lord has been good to you.’’ I lifted my hand and in a language other than spoken words I said to the Reverend, ‘‘Go Home; you have served many and done much good. Your job here is done.’’ I quietly exited the room and left him with his family at his bedside, our private conversation safe. Their struggle continued in the following days. The disease progressed, he weakened, and the machine labored more and more. The team struggled to see him suffer; yet, we had to respect their decision and remind ourselves daily to serve their needs and goals, not ours, comfortable with their decisions done on their own terms. Long after he is gone, they will live with the memories of his final days and moments. It is my job to ensure that they may find solace in their care and with the knowledge that we supported them. And so, on my final day with the Reverend, I entered the room and found him just as I expected. He was unresponsive, lying there in an unfamiliar bed, attached to a tangled nest of wires and tubes, connected to monitors that only served to remind us that some organs were still working. The mask of

Filial Piety in Palliative Care: Faithfully Following Family Feelings. Or Is It?

As lovely and as noble as the notion of children’s sense of obligation to their parents is, we wonder: Is it really pious? Is it an admirable attribute of cultural competence or convenient cultural capitulation? Is it benevolent paternalism? Is it lacking elements of informed consent, truth telling, and autonomy? Is it moral relativism or situation ethics? Is there a unique or special guiding principle of medical ethics as it relates to the domain of palliative care? Our palliative care consultative service contemplated these dilemmas during and after a recent complicated consultation. Author and movie writer Nancy Meyers might say, ‘‘It’s complicated.’’ At the request of the critical care service, our team consulted the family of Mrs. M, an elderly woman from the U.S. Virgin Islands of Latino heritage who was critically ill with respiratory distress secondary to a right main stem bronchus occlusion from tumor mass. The emergency and critical care doctors had informed her and the family that she was most likely going to die, suggested against intubation, and requested a palliative care consultation to clarify treatment goals with possible transition to hospice care. Confounding factors present at the time of the consultation included the respiratory distress, medication used to comfort the distress, hearing impairment, and English as a second language. Case management informed our team that the family would speak for the patient and would make all decisions. Our team assessed the needs of the patient with the family who consisted of three daughters, two sons, a granddaughter, and a retired surgeon son-in-law. Mrs. M had long come to Mayo Clinic in Florida for medical care and resided with family who lived locally; however, the preponderance of family remained in the U.S. Virgin Islands. They came expeditiously upon hearing the grave prognosis, and ultimately all were present for the approximately 90-minute palliative care family meeting. The conference was cordial, especially given the fact that the preponderance of the family arrived minutes prior to the conference with minimal time to absorb the bad news. However they were unanimous in their request that we avoid speaking about the impending death with the patient herself, expressing their concern that additional discussion was overwhelmingly anxiety-producing and not consistent with what they believed were her wishes. There was no advance directive and no husband; therefore, the de facto surrogate really was the family. Fortunately there was consensus among family participants. All seemed to participate in equal measure with due consideration for all. Her wish as articulated by the family was to live and die at home in the U.S. Virgin Islands. In order to honor this wish, a protracted fourto five-hour air ambulance flight was required; yet this was viewed by all the medical personnel as medically imprudent and quite risky, fearing death in transit. Mrs. M actually stabilized and improved to the extent that the family elected to transport her (at their expense and to honor their mother) from our hospital to her home with intent to admit to hospice there. She was airlifted to her home in the U.S. Virgin Islands where she died peacefully amongst her family and pets, consistent with the family’s wishes. Angst among our team was considerable; chief among the concerns was the element of autonomy and truth telling. We relied on the prior documentation by the admitting physicians for the limitation of life-prolonging treatments (no intubation and do-not-resuscitate status); we did not confirm directly with the patient. We assessed her understanding of the diagnosis and prognosis via the family; indeed the entire plan of care evolved without her direct participation as requested by the family and due to her medical condition. Did we collude with the family by not insisting on speaking directly with the patient? No; collusion manifests in protean forms, is variable in degree and not necessarily absolute. Its manifestations vary depending on participants, cultural context, philosophy of providers, and family dynamics. Individualistic societies focus on that which favors individuals, and collective societies support interdependent group interests; the notion of collusion naturally will be very different in each group. Is one correct and the other incorrect? Ultimately, we (the authors) soothed our angst with evolving phronesis, a consequence of multiple factors, including especially the time with a family who possessed a simple equanimity of family affection (filial piety). Confucius described the notion of filial piety often attributed to Asian cultures and less so to Latino cultures. A similar principle of familism, which values one’s family above oneself, is a cultural value that sets Hispanics apart from other cultural groups. Yet the notions of filial piety and familism may be more similar than dissimilar; indeed, they may apply equally to nonhispanic whites and nonhispanic blacks, as well as Hispanics. Cultural competence and sensitivity suggests that a culture honor another culture’s perspective which

Increased Incidence of Loco-Regional Recurrences Among African American Women with Terminal Stage Breast Cancer

A prospective analysis of women with terminal breast cancer admitted to CHNE from November 2006-August 2007 evaluated anecdotal observations that African American (AA) women are likelier than Caucasian women to evidence loco-regional recurrences (LRR). Women with terminal breast cancer who were admitted to CHNE, a not-for-profit hospice serving over 90% of Northeast Florida hospice patients, were eligible for participation. 134 terminal breast cancer patients were assessed by hospice nurses for LRR presence via chest wall examination. 80% of them (107) were Caucasian, 17% (23) were AA and 3% (4) were of other ethnicities. Evidence of LRR were noted in 13% of the women (17/134). The proportion of patients with LRR was higher in AA women than Caucasian women (26% vs. 10%, 6/23 vs. 11/107, respectively), although this difference was not statistically significant (p = 0.08). The majority of Caucasian women with LRR consented to a medical record review, but a minority of AA women consented (8/11 vs. 2/6, respectively, p = 0.16). Conclusion Evaluating disparities in breast cancer care outcomes is possible by reviewing data from patients served by hospice programs that aid a majority of patients within a community. This pilot data suggests that AA women with breast cancer have a higher incidence of loco-regional failure as a component of their terminal breast cancer disease than Caucasian women. A smaller proportion of AA patients and families agreed to participate in a medical record review study than Caucasians. Larger studies are necessary to confirm these findings, to elucidate factors contributing to disparities and to develop potential solutions.