Journal of Palliative MedicineVol. 22, No. 8 Personal ReflectionThe Miracle DrugRomeo Bascioni, Barbara Esperide, Fiorinda Di Fabio, and Francesca GiorgiRomeo BascioniAddress correspondence to: Romeo Bascioni, MD, Unità di Oncologia Medica, Ospedale Murri, Fermo, Hospice, Montegranaro, Fermo 63900, Italy E-mail Address: romeo.bascioni@gmail.comUnità di Oncologia Medica, Ospedale Murri, Fermo, Hospice, Montegranaro (FM), Fermo, Italy.Search for more papers by this author, Barbara EsperideUnità di Oncologia Medica, Ospedale Murri, Fermo, Hospice, Montegranaro (FM), Fermo, Italy.Search for more papers by this author, Fiorinda Di FabioUnità di Oncologia Medica, Ospedale Murri, Fermo, Hospice, Montegranaro (FM), Fermo, Italy.Search for more papers by this author, and Francesca GiorgiUnità di Oncologia Medica, Ospedale Madonna del Soccorso, San Benedetto del Tronto (AP), Italy.Search for more papers by this authorPublished Online:1 Aug 2019https://doi.org/10.1089/jpm.2019.0008AboutSectionsView articleView Full TextPDF/EPUB Permissions & CitationsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail View article"The Miracle Drug." Journal of Palliative Medicine, 22(8), pp. 1002–1003FiguresReferencesRelatedDetails Volume 22Issue 8Aug 2019 InformationCopyright 2019, Mary Ann Liebert, Inc., publishersTo cite this article:Romeo Bascioni, Barbara Esperide, Fiorinda Di Fabio, and Francesca Giorgi.The Miracle Drug.Journal of Palliative Medicine.Aug 2019.1002-1003.http://doi.org/10.1089/jpm.2019.0008Published in Volume: 22 Issue 8: August 1, 2019PDF download

e20507 Background: Hospice care is an underused high-quality end-of-life model of patient care. Family members of patients (pts) are often reluctant to accept inpatient hospice services and efforts are needed to identify barriers to hospice enrollment: a common concern is the risk of physical and emotional detachment from their relative. Methods: Two psychologists conducted a semi-structured telephone interview of family caregivers of cancer pts who had died in our inpatient hospice after a stay of at least 1-week. Questions focused on: (i) level of knowledge about inpatient hospice care; (ii) attitude towards hospice care before and after pts admission; (iii) perception of physical and emotional proximity to their relative; (iv) key quality-of-care issues; and (v) overall satisfaction with the quality of care (measured with a five-point scale: very poor, poor, fair, good, excellent). Results: The leader caregiver of 66 pts was contacted; 63 accepted the interview (40 sons, 8 spouses, 8 in-laws, 3 brother/sister, 4 others). Patients were followed in our inpatient hospice for 1-2 wks (44%), 2-4 wks (46%), > 4 wks (10%). At admission, 35% of caregivers had inadequate knowledge about inpatient hospice care, 36% had been informed by other caregivers who used hospice care in the past, 24% by their oncologist, 5% by the media. Of the caregivers, 11% were initially opposed to the admission, 81% were in favor; 8% had no opinion. All negative opinions were changed to

In May 2012, we received a telephone call from a colleague at a regional cancer center. She asked whether we could admit a patient to our hospice—a man with relapsed, metastatic oral cancer and a life expectancy of only a few weeks. She seemed hesitant while describing the patient’s history. “This is a complicated case, from the medical as well as the psychological point of view. Dealing with the family won’t be easy. But we have to discharge him, and your hospice is the closest to his native village.” To care for patients throughout the whole course of their illness and until their eventual death, our oncology unit includes an inpatient hospice, one of the only such facilities in our region of Italy. As a result, we often receive requests for admission of patients we do not know, many with complicated medical and relational challenges. All too often, these patients tell us that they were caught off guard by being sent to a hospice, and they arrive too late for optimal clinical management. On the basis of our colleague’s description, we guessed that this patient, too, did not know his prognosis and would be unprepared to transition to a phase of palliative care only. Mr T turned out to be a wealthy and charming 45-year-old man, born and raised in Italy, who, approximately 15 years earlier, had started a business in Romania. He had been living with a Romanian woman, and the couple had a young daughter. Six months before we met him, he had undergone surgical resection and standard chemotherapy for his malignancy in Romania, but when his cancer rapidly recurred and progressed, he decided to return to Italy, hoping for more effective therapy. Three months before he was referred to our hospice, the cancer spread to the left side of his face and lymph nodes. In a desperate attempt to eradicate his disease, he underwent radical surgery to remove large parts of his face, followed by reconstructive surgery using two flaps of skin from his chest. He also required two subsequent interventions to repair surgical complications, after which his facial features were significantly altered. Despite these aggressive surgeries, the cancer quickly recurred again and progressed rapidly, eroding into the bones in the skull. He received palliative radiotherapy, but cure was no longer possible. And so Mr T was sent to our hospice. He was able to see only with one eye and could do that only by lifting his ptotic eyelid with his fingers. Skin and lymph node metastases were visible in his neck and chest. He required frequent aspiration of pus-like secretions from his tracheostomy and was fed through a gastrostomy. He could still walk for a few steps with some help, and his pain was adequately controlled by a continuous infusion of morphine. No longer able to speak, he was forced to communicate in writing, but what he wrote made it clear that his mental status was still normal. As we had anticipated, despite all that he had been through, the patient seemed unaware of the rapid and irreversible worsening of his clinical condition. He informed us that he had not been told by the referring hospital that he was going to die, but rather that the goal of this admission was to help him recover from damage caused by the palliative radiotherapy. It was painful to watch Mr T ask about all the details of his care plan with the idea that he could still be cured. More than anything, he wanted to get well enough to go back home to his 8-year-old daughter in Romania, even though he realized that this was outside his grasp at the time he arrived. Mr T was an ambitious and intelligent man, with a good sense of humor. When we asked him to suggest how we could reduce the lengthy, intrusive visits of an overzealous family member, for instance, he replied by making a hand gesture that mimed shooting her with a pistol. Despite his physical limitations, he was charming toward the hospice personnel, paying special attention to young female nurses. Of course his face was not even close to what used to be—but he would often show an old picture of himself before the disease, as a reminder of his past as a Latin lover. Walking by his room, we would sometimes catch him sitting on the edge his bed, with his elbow leaning on the bedside table and his fingers lifting his paralyzed eyelid, staring at his destroyed face in a mirror. We wondered how he could possibly cope with such a devastating change of his appearance. JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 31 NUMBER 4 FEBRUARY 1 2013

AbstractObjective:Cancer patients and family members can feel abandoned by their oncologist at the transition to end-of-life (eoL) care. In this study, we evaluated the level of satisfaction of family caregivers when the oncology team assisted the patient until death.Methods:Two oncology units were reorganized to ensure continuity of care; oncologists trained in palliative care medicine assisted patients until death. Relatives who assisted the patient at home or at an inpatient hospice underwent a semi-structured phone interview >1 month after the patient's death. Satisfaction was measured using a five-point Likert scale ranging from very dissatisfied (score 0) to very satisfied (score 100).Results:Relatives of 65 patients were contacted, 55 accepted the interview. Patients were followed at home (41) or at an inpatient hospice (14), for 1–24 weeks (median 3 weeks). A specific question on the relevance of the oncologist having a role in EoL care produced a score of 82. The overall satisfaction score was higher than in our previous study in which a continuity of care model was not adopted, with a score improvement from 55/100 to 84/100 (p < 0.001).Significance of results:A care program where the oncologist is involved in EoL management improved the satisfaction of caregivers of cancer patients. When a longstanding and trusting relationship has been established, the connection between the patient and the oncologist should not be lost.

9098 Background: Optimizing the impact of EoL care on cancer patients (pts) and their caregivers should be a primary goal of an oncology unit. In this study we evaluated satisfaction of family caregivers when the medical oncology team assisted pts until death. Methods: Two oncology units were reorganized to ensure continuity of care; oncologists trained in palliative care medicine assisted pts until EoL. The model assumes that the medical oncologist (MO) is the physician in charge throughout the entire disease trajectory. Relatives of pts assisted at home or at an inpatient hospice underwent a semistructured phone interview conducted by a psychologist or a social worker > 1 month after pts' death. Satisfaction was evaluated for symptoms control, communication, psychological support, overall quality of care and continuity of therapeutic relationship with the MO. A final open-ended question was included for any additional comment. Satisfaction was measured using a five-point Likert scale ranging from very dissatisfied to very satisfied and converted to a 0-to-100 scale. Results: Relatives of 65 pts were contacted, 55 accepted the interview (27 spouses, 22 sons, 5 in-laws, 1 parent); 50/55 were the leader caregiver. Patients were followed at home (41) or at an inpatient hospice (14), for 1-24 wks. Satisfaction mean scores were: symptoms control 76/100, communication 85, psychological support 82 and overall quality of care 87; a specific question on the relevance of the MO in EoL care produced a score of 87, with no negative or neutral responses recorded for this item. Of note, a common perception among caregivers was the appreciation of the MO's commitment during EoL in addition to the technical quality of the intervention. The overall satisfaction score was higher than in our previous study in which a continuity of care model was not formally adopted, with a score improvement from 55 to 87/100. Conclusions: A care pathway where the MO is involved in EoL management of cancer pts improved satisfaction of caregivers.When a longstanding and trusting relationship has been established, the pts-MO connection should not be lost to prevent feelings of abandonment.

6145 Background: The transition from curative to palliative care is a difficult phase in the illness trajectory of many oncologic patients (pts). Change of the health care professionals involved in EoL assistance may result in a sense of abandonment for pts and families. Methods: A semistructured telephone interview was conducted by two psychologists on relatives of pts who died between 01/2008 and 06/2009 (time from death ranged between 6 and 24 months). Research questions focused on the last month of life and included oncologist's involvement, sense of abandonment if the patient-oncologist relationship was lost, satisfaction with the quality of care (measured with a five-point scale: poor, fair, good, very good, excellent; and converted to a 0-to-100 scale) and oncologist's involvement in bereavement activities. A final open-ended question addressed suggestions for improvement. Results: Fifty-eight patient's relatives were contacted, 50 accepted the interview (32 spouses, 14 children, 3 in-laws, 1 nephew). Twenty-two pts had died at home, 28 in hospital. In 39 (78%) cases the oncologist-patient relationship was maintained in the last month of life, and this continuity was highly appreciated by the family. For the 11 pts (26%) who lost contact with their oncologist, a sense of abandonment was reported only in one case; in all other cases there was a closure of the patient-physician relationship that prevented feelings of abandonment. While the mean score of overall satisfaction relative to the quality of care in the last month of life was 61, this score dropped to 34 for pts who were no longer followed by their oncologist. Only in 13 (26 %) cases there was a post-mortem communication between the family and the oncologist, always on the family's initiative. Every relative interviewed expected at least a phone call from the oncologist. Conclusions: Continuity of care at the EoL is a priority issue for the families of cancer pts. The daily routine of palliative care and hospice facilities should involve the oncologist to improve the experience of care. Patients' families expect a commitment by the oncologist in bereavement activities. No significant financial relationships to disclose.

8205 Background: Regular measurement of QOL in cancer patients (pts) seems to improve patient-physician communication and symptom control. Few studies evaluated feasibility and compliance of QOL questionnaires outside clinical trials during routine clinical practice in oncology. Methods: Aim of the study was to assess the compliance of a systematic approach of measuring QOL in cancer pts. Consecutive cancer outpatients scheduled for chemotherapy in two oncology clinics were included in the study; they received the EORTC QLQ C-30 questionnaire (validated Italian version) in the medical oncology clinic during waiting time before receiving IV therapy. The questionnaires were presented to pts by a medical oncologist or by a psychologist. Patients who did not complete or had problems with the assessment were analyzed for causes of non-compliance. Results: During two weeks 165 pts were approached, F 107 M 58, median age 66 years (range 34–84), education level: primary school 96 pts, middle school 37, high school 25 pts, graduate 5 pts, PS ECOG 0 = 93 pts, 1 = 40 pts, 2 = 21 pts, 3 = 11. Main tumour types: breast 45, colorectal 39, lung 30. One hundred fifty-five pts (94%) received intravenous chemotherapy or immunotherapy. Questionnaires were correctly completed by 62 pts (37%); 67 pts (41%) needed help from health care staff, 21 pts from family members, 5 pts returned an incomplete questionnaire, 10 pts refused evaluation. Causes of help request in QOL evaluation were: writing or reading problems in 54 pts (33%), inability to understand some questions in 37 pts (22%). Main questions not understood in the QLQ C-30 were: n° 30 (28 pts), n° 29 (12 pts), n° 27 (12 pts). Reasons for refusal of QOL evaluation were: low PS (6 pts), cognitive impairment (2 pts), simple refusal (2 pts). Conclusions: Collection of QOL data outside clinical trials is a difficult task; we observed a low number (37%) of fully compliant pts with EORTC QLQ C-30. We are considering the application of more simple and less time consuming QOL instruments in clinical practice in order to increase compliance. No significant financial relationships to disclose.