Retrospective qualitative pilot study incorporating patients' personal life aspects on admission to palliative care : What should we know about patients to give them the best possible care?

BACKGROUND: This pilot study examined which of a patient's personal aspects should be taken into account in a hospital setting on admission to the palliative care unit (PCU) by asking patients the question "what should I know about you as a person to help me take the best care of you that I can?" METHODS: This retrospective study used qualitative methodology to thematically analyze answers from 14 patients admitted to the PCU of the Medical University of Vienna during July and August 2018. The question "what should I know about you as a person to help me take the best care of you that I can?" was asked on the day of admission, notes were taken during the interview and the patient's answers were written out immediately afterwards. Data were analyzed using NVivo 12. RESULTS: Results revealed four topics: characterization of one's personality, important activities, social bonding, and present and future concerns regarding the patient's illness. Data showed that this question enabled patients to describe themselves and what was important to them. This might result in an improved sense of self-esteem in patients and represents an opportunity for professionals to treat patients in a more individualized manner; however, patient reactions also revealed a reluctance to address certain personal issues within a medical context. CONCLUSION: The study results provide insights into the benefits of paying more attention to personal life aspects of severely ill patients on admission to a PCU. Addressing individual aspects of patients' lives might improve the healthcare professional-patient relationship.

Patients' attitude and knowledge towards resuscitation and advance care planning at the palliative care unit.

OBJECTIVE: There is a lack of information about patients' attitudes towards and knowledge of resuscitation and advance care planning (ACP) in the palliative care unit (PCU). The aims of this study were to examine (a) patients' attitudes towards and knowledge of the topic of resuscitation, (b) patients' level of education about their illness and (c) their concept of ACP. METHODS: This study used a qualitative methodology that involved semi-structured interviews with advanced cancer patients admitted to the PCU. Interviews were conducted during the first week after admission, recorded digitally and transcribed verbatim. Data were analysed through content analysis using NVivo 12. RESULTS: Eighteen interviews revealed the following themes: (a) ambivalence regarding preference for or refusal of resuscitation, (b) patient confidence concerning their level of education, (c) lack of information about ACP and (d) positive perception of the stay in the PCU. The data showed that a high percentage of PCU patients desired resuscitation even though education about their illness was mostly perceived as good. Many patients did not receive information about ACP. Patients perceived the stay in the PCU positively. CONCLUSION: The study results reveal that there is lack of knowledge about ACP and resuscitation in patients in the PCU.

Establishing end-of-life boards for palliative care of patients with advanced diseases.

BACKGROUND: Interdisciplinary tumor board decisions improve the quality of oncological therapies, while no such boards exist for end-of-life (EOL) decisions. The aim of this study was to assess the willingness of hemato-oncological and palliative care professionals to develop and participate in EOL boards. An aim of an EOL board would be to establish an interdisciplinary and comprehensive care for the remaining lifetime of patients suffering from advanced incurable diseases. STUDY DESIGN: Staff from the interdisciplinary teams of all hemato-oncological and palliative care wards in Vienna were invited to anonymously participate in an online survey. RESULTS: 309 professionals responded. 91% respondents reported a need to establish an EOL board, 63% expressed their willingness to actively participate in an EOL board, and 25% were indecisive. Regarding patient presence, 50% voted for an EOL board in the presence of the patients, and 36% voted for an EOL board in the absence of the patients. 95% had the opinion that an EOL board could improve patient care in the last phase of life. 64% stated that the development of an EOL board would be worthwhile, while 28% did not see enough resources available at their institutions. Regarding the desired type of documentation, 61% voted for a centrally available EOL decision, and 31% supported an in-house-based documentation. 94% voted for the availability of an information folder about EOL care. CONCLUSION: The willingness of professionals to establish an EOL board was very high. Further steps should be taken to implement such boards to improve EOL care.

Critically ill patients with cancer: chances and limitations of intensive care medicine-a narrative review.

This narrative review deals with the challenge of defining adequate therapy goals and intensive care unit (ICU) admission criteria for critically ill patients with cancer. Several specific complications of critically ill patients with cancer require close collaborations of intensive care and cancer specialists. Intensivists require a basic understanding of the pathophysiology, diagnosis and therapy of common cancer-specific problems. Cancer specialists must be knowledgeable in preventing, detecting and treating imminent or manifest organ failures. In case of one or more organ dysfunctions, ICU admissions must be evaluated early. In order to properly define the therapy goals for critically ill patients with cancer, decision-makers must be aware of the short-term intensive care prognosis as well as the long-term oncological options and perspectives. Multidisciplinary teamwork is key when it comes down to decisions on ICU admission, planning of therapeutic aims, patient management in the ICU and tailored therapy limiting with smooth transition into a palliative care (PC) setting, whenever appropriate.

What Makes a Good Palliative Care Physician? A Qualitative Study about the Patient's Expectations and Needs when Being Admitted to a Palliative Care Unit.

OBJECTIVE: The aims of the study were to examine a) patients' knowledge of palliative care, b) patients' expectations and needs when being admitted to a palliative care unit, and c) patient's concept of a good palliative care physician. METHODS: The study was based on a qualitative methodology, comprising 32 semistructured interviews with advanced cancer patients admitted to the palliative care unit of the Medical University of Vienna. Interviews were conducted with 20 patients during the first three days after admission to the unit and after one week, recorded digitally, and transcribed verbatim. Data were analyzed using NVivo 10 software, based on thematic analysis enhanced with grounded theory techniques. RESULTS: The results revealed four themes: (1) information about palliative care, (2) supportive care needs, (3) being treated in a palliative care unit, and (4) qualities required of palliative care physicians. The data showed that patients lack information about palliative care, that help in social concerns plays a central role in palliative care, and attentiveness as well as symptom management are important to patients. Patients desire a personal patient-physician relationship. The qualities of a good palliative care physician were honesty, the ability to listen, taking time, being experienced in their field, speaking the patient's language, being human, and being gentle. Patients experienced relief when being treated in a palliative care unit, perceived their care as an interdisciplinary activity, and felt that their burdensome symptoms were being attended to with emotional care. Negative perceptions included the overtly intense treatment. CONCLUSIONS: The results of the present study offer an insight into what patients expect from palliative care teams. Being aware of patient's needs will enable medical teams to improve professional and individualized care.

Psyche at the end of life: Psychiatric symptoms are prevalent in patients admitted to a palliative care unit.

OBJECTIVE: Our aim was to evaluate the frequency and treatment of psychiatric symptoms in patients at palliative care units (PCUs). METHOD: Patients admitted to one of five participating PCUs in Austria were included. The short version of the Patient Health Questionnaire (PHQ-D) was used to evaluate their mental health status. Pain intensity was rated on a numeric rating scale (NRS) from 0 to 10 by patients and physicians. Patients with a previously diagnosed psychiatric disorder were compared to those without or with newly diagnosed psychiatric symptoms, based on PHQ-D results. Pain and psychopharmacological medication were assessed. Opioid doses were converted into oral morphine equivalents (OMEs). RESULTS: Some 68 patients were included. Previously undetected psychiatric symptoms were identified in 38% (26 of 68), preexisting psychiatric comorbidities were evident in 25% (17), and no psychiatric symptoms were observed in 37% (25). Patients with a preexisting psychiatric comorbidity received antidepressants and benzodiazepines significantly more often than patients without or with previously undetected psychiatric symptoms (p < 0.001). Patient and physician median NRS ratings of pain intensity correlated significantly (p = 0.001). Median NRS rating showed no significant difference between patients with preexisting, previously undetected, or without psychiatric symptoms. OMEs did not differ significantly between preexisting, without, or previously undetected psychiatric symptoms. Patients with undetected and preexisting psychiatric comorbidities had a greater impairment in their activities of daily living than patients without psychiatric symptoms (p = 0.003). SIGNIFICANCE OF RESULTS: Undetected psychiatric comorbidities are common in patients receiving palliative care. Screening for psychiatric symptoms should be integrated into standard palliative care to optimize treatment and reduce the psychosocial burden of the disease.

Polypharmacy in the terminal stage of cancer.

PURPOSE: This study aims to determine the numbers of patients with advanced cancer receiving polypharmacy at the end of their lives and analyze differences in drug prescription at a general oncology ward and a dedicated palliative care ward. METHODS: A retrospective single-center cohort study at a university hospital with a large cancer center was conducted. The charts of 100 patients who had died because of advanced cancer were reviewed; data concerning sociodemographic variables and medications were collected at four predefined time points (9, 6, 3, 0 days before death). RESULTS: Nine days before death, polypharmacy was registered in 95 % of patients; they had prescriptions for 11 (9-13) different medications per day (median, IQR). Although this number dropped significantly, on the last day as many as 61 % of the patients were still taking more than 4 drugs (median 6.5, IQR 4-9). No significant difference was noted between the oncology ward and the palliative care ward. Polypharmacy was largely dependent on the patients' ECOG performance status as well as the type of ward, the number of days before death, and age. It was not influenced by gender, the duration of hospital stays, and the devices facilitating drug administration. The medications fulfilled the requirements of palliative care in the majority of patients; 90 % received treatment for pain and anxiety. Patients treated at the palliative ward received more opioids and psychoactive drugs while those at the oncology ward received more anti-cancer drugs and fluids. CONCLUSIONS: Polypharmacy still is a problem in the large majority of patients with terminal cancer. Further studies should be focused on the patients' quality of life, drug interactions, and adverse events.

Walking the line. Palliative sedation for existential distress: still a controversial issue?

Adequate symptom relief is a central aspect of medical care of all patients especially in those with an incurable disease. However, as an illness progresses and the end of life approaches, physical or psychoexistential symptoms may remain uncontrollable requiring palliative sedation. Although palliative sedation has become an increasingly implemented practice in the care of terminally ill patients, sedation in the management of refractory psychological symptoms and existential distress is still a controversial issue and much debated. This case report presents a patient who received palliative sedation for the treatment of existential distress and discusses considerations that may arise from such a therapeutic approach.

War and peace? The oncologic and the palliative care perspective on personalized cancer treatment in a patient with advanced cancer.

Personalized cancer treatment utilizing targeted therapies in a tailored approach is based on tumor and/or patient-specific molecular profiles. Recent clinical trials continue to look for new potential targets in heavily pretreated patients or rare disease entities. Careful selection of patients who may derive benefit from such therapies constitutes a challenge. This case report presents an experimental personalized cancer treatment in an advanced cancer patient and provides a list of issues for discussion: How can we combine treatment goals and simultaneously meet the individual needs in advanced cancer reconciling both perspectives: oncology and palliative care?

Coming and going: predicting the discharge of cancer patients admitted to a palliative care unit: easier than thought?

PURPOSE: Discharging a patient admitted to an inpatient palliative care unit (PCU) is a major challenge. A predictor of the feasibility of home discharge at the time of admission would be very useful. We tried to identify such predictors in a prospective observational study. METHODS: Sixty patients with advanced cancer admitted to a PCU were enrolled. Sociodemographic data were recorded and a panel of laboratory tests performed. The Karnofsky performance status scale (KPS) and the palliative performance scale (PPS) were determined. A palliative care physician and nurse independently predicted whether the patient would die at the ward. The association of these variables with home discharge or death at the PCU was determined. RESULTS: Sixty patients (26 men and 34 women) with advanced cancer were included in the study. Discharge was achieved in 45 % of patients, while 55 % of patients died at the PCU. The median stay of discharged patients was 15.2 days, and the median stay of deceased patients 13.6 days. Median KPS and PPS on admission was 56.2 % for the entire group and significantly higher for discharged patients (60.7 %) compared to deceased patients (52.4 %). Median BMI on admission was 22.8 in the entire group and was similar in discharged and deceased patients. No correlation was found between a panel of sociodemographic variables and laboratory tests with regard to discharge or death. In a binary logistic regression model, the probability of discharge as estimated by the nurse/physician and the KPS and PPS were highly significant (p = 0.008). CONCLUSION: Estimation by a nurse and a physician were highly significant predictors of the likelihood of discharge and remained significant in a multivariate logistic regression model including KPS and PPS. Other variables, such as a panel of laboratory tests or sociodemographic variables, were not associated with discharge or death.

Predicting discharge of palliative care inpatients by measuring their heart rate variability.

OBJECTIVES: Home discharge after hospital admission to an inpatient palliative care unit (PCU) is a major challenge. Dysfunction of the autonomic nervous system is commonly observed in patients with advanced cancer in this setting. The aim of this prospective observational study was to determine whether the measurement of heart rate variability (HRV) by assessing parameters of the autonomic nervous system on a 24-h-ECG at the time of admission to the PCU was correlated with the likelihood of discharge. METHODS: Sixty hospitalized patients with advanced cancer of distinct origin, admitted to a PCU, were enrolled consecutively. The Karnofsky performance status scale (KPS) and the palliative performance scale (PPS) were obtained. HRV was measured over one day (20-24 hours) using a portable five-point ECG. The aim of the study was to compare HRV measurements in patients who could be discharged and those who died. The association of these variables with home discharge or death at the PCU was calculated. RESULTS: Discharge was achieved in 45% of patients while 55% of patients died. Median KPS and median PPS on admission were significantly higher in discharged patients than in those who died (P=0.001). Patients who were discharged tended to have a higher HRV, although the difference was not significant. CONCLUSIONS: KPS and PPS were significant predictors of the likelihood of discharge while HRV did not predict discharge.

Patients and staff perceptions of cancer patients' quality of life.

BACKGROUND: Discrepancies exist in estimation of quality of life (QL) by patients and caregivers but underlying factors are incompletely characterised. METHODS: QL of 153 patients was estimated by themselves, by 70 nurses and by 53 physicians in a cross-sectional study. Variables which could influence inter-rater agreement were evaluated. RESULTS: Inter-rater agreement of QL was fair (r = .292) between patients and nurses and between patients and physicians (r = .154). Inter-rater agreement with nurses was significantly lower concerning fatigue and pain for patients with a Karnofsky Index <50 when compared to patients with a KI > 50. Their inter-rater agreement with physicians was significantly lower for fatigue, pain and physical functioning. Agreement on the degree of anxiety was significantly (p = .009) better for female patients. Agreement on the need for social assistance (p = .01) and physical functioning (p = .03) was significantly better for male patients. Agreement with patients on their physical functioning was significantly (p = .03) better for male nurses and male physicians (r = .944) than for female nurses and female physicians (r = .674). CONCLUSIONS: Our study showed that estimation of overall QL of patients by professional caregivers is inaccurate. Inter-rater agreement was influenced by KI of patients, by gender of patients and caregivers and by professional experience of nurses.

Life is uncertain. death is certain. Buddhism and palliative care.

It is part of a palliative care assessment to identify patients' spiritual needs. According to Buddhism, suffering is inherent to all human beings. Advice on how suffering can be reduced in the course of serious illness might be helpful to patients with incurable and progressive diseases. Palliative care could benefit from Buddhist insights in the form of compassionate care and relating death to life. Buddhist teachings may lead to a more profound understanding of incurable diseases and offer patients the means by which to focus their minds while dealing with physical symptoms and ailments. This might not only be beneficial to followers of Buddhism but to all patients.

Reversible delirium in an advanced cancer patient.

Delirium is still one of the most common and distressing symptoms in palliative care patients. Causes and pathophysiology of this neuropsychiatric dysfunction are multifactorial. Recent studies indicate that the interaction of special triggers facilitates development of delirium. Some of them are reversible. This case report presents a reversible delirium in an advanced cancer patient and offers a list of possible delirogen medications. This list might be useful to prevent delirium, particularly in older people.

Thromboprophylaxis in patients receiving inpatient palliative care: a survey of present practice in Austria.

BACKGROUND: There is limited data on the use of thromboprophylaxis in patients with advanced cancer. We therefore aimed to study the practice of thromboprophylaxis in palliative care units in Austria. METHODS: We monitored use, indication, and contraindications to thromboprophylaxis in 134 patients hospitalized in 21 palliative care units in a prospective, cross-sectional study. RESULTS: Forty-seven percent of patients were on low molecular weight heparin on the day of the study for primary or secondary thromboembolism. Thromboprophylaxis had been withdrawn in 18% of the patients upon admission to the palliative care unit. Contraindications for thromboprophylaxis were present in 27% of all patients. Cancer was present in 86% of the patients. The use of thromboprophylaxis was similar in cancer patients and in non-cancer patients (49% vs. 42%). Contraindications for thromboprophylaxis were present in 24% of all cancer patients. Significantly more bedridden cancer patients had contraindications for prophylaxis when compared with mobile cancer patients (35% vs. 16%; p = 0.03). Low performance status was by far the most frequent contraindication among these patients (89%). Seventy-one percent of all bedridden cancer patients were treated in accordance with common guidelines for thromboprophylaxis when contraindications were taken into account. Eighty-seven percent of patients who had been involved in decision making opted for getting prophylaxis. CONCLUSIONS: Our data reveal that about half of all cancer patients in palliative care units are treated with thromboprophylaxis. Low performance status was the most frequent contraindication for thromboprophylaxis.

Attitudes towards palliative care in primary metastatic cancer: a survey among oncologists.

Oncologists differ widely in their attitudes towards palliative care and services. These attitudes depend on a number of individual and society-based variables. It is recommended that palliative care be started early in the disease trajectory of patients with a life-threatening disease but in Austria we lack data on oncologists' adherence to this recommendation. We surveyed 785 oncologists in Austria by presenting the clinical course of a hypothetical patient with primary metastatic breast cancer from diagnosis until death. The majority of oncologists would involve palliative care services when the patient's Karnofsky index (KI) was < 50, and hospice services when the KI was < 40. Special training in palliative care was significantly associated with early use of hospice services. Reasons for not involving palliative care and hospice services earlier than indicated were systematically evaluated and included, among others, "fear of destroying the patient's hopes" (36% of respondents with regard to palliative services, 57% with regard to hospices). Overall, 67% of the oncologists would inform the patient about the malignant nature of her disease and the anticipated limitation of her life expectancy at the time of diagnosis. Issuing an advance directive would be discussed by only 25% at that time. Our data show that oncologists involve palliative care services at an advanced stage of disease in patients with primary metastatic cancer and that information about malignancy and the incurable nature of the disease is not uniformly provided at the time of diagnosis.

Attitudes of patients with malignancies towards completion of advance directives.

AIM: The purpose of advance directives (AD) is to preserve the patient's autonomy at the end of his/her life. In a cohort study, we investigated attitudes towards AD in hospitalized patients with malignant disease. MATERIALS AND METHODS: All patients were informed about the basic features of AD in a standardized manner by a single independent physician. One hundred and eight (39 women, 69 men; mean age 56.6 +/- 14.9 years) of 140 invited patients completed the study. MAIN RESULTS: Five percent of patients (5/108) already had an AD; 85% (92/108) did not wish to issue an AD. "Full confidence in physicians" (22%) and "not important for me at the moment" (15%) were the most frequently stated reasons for not issuing an AD. Only 10% (11/108) of patients decided to complete an AD. Their decision was not related to a specific diagnosis or a number of socio-demographic variables that were studied. Patients who decided in favor of an AD had significantly higher Hospital Anxiety and Depression Scale (HADS-D) score than those who decided against it (HADS-D, 8.3 +/- 5.0 vs.5.8 +/- 4.1, p = 0.035). The patients' HADS depression score was negatively associated with their Karnofsky index (r = -0.232, p = 0.017). CONCLUSIONS: Our data reveal a scarce demand for AD in our population of hospitalized cancer patients. Patients who wanted to issue an AD had a high HADS-D, which is associated with a low performance status.

Use of thromboprophylaxis in palliative care patients: a survey among experts in palliative care, oncology, intensive care, and anticoagulation.

Study-based guidelines on thromboprophylaxis are not available for palliative care patients. The authors asked a panel of academic medical experts in palliative care, oncology, blood coagulation, and intensive care to select a prophylactic regimen out of 5 predefined options for a virtual patient with advanced bronchial cancer in different clinical settings. Primary prophylaxis for venous thromboembolism was withdrawn by all physicians when the patient had a Karnovsky's index of 10 and was described as dying. It was given by 25% of physicians when the patient had a Karnovsky's index of 20 and by 85% when Karnovsky's index 40 was still 40. Similar results were obtained in the situation of secondary prophylaxis of venous thromboembolism and when the patient was described as having a history of chronic atrial fibrillation. This data clearly show that thromboprophylaxis is delivered according to a compound estimate of risks and benefits of such prophylaxis in a specific palliative care situation.

[Management of oral anticoagulation during invasive procedures]. / Management der oralen Antikoagulation bei invasiven Eingriffen.

Temporary interruption of oral anticoagulation to perform invasive procedures is a frequently occurring medical problem. There are only a few studies available on the optimal clinical approach in this situation. The published clinical studies and guidelines are summarized.

Clinical significance of gene-diagnosis for defects in coagulation factors and inhibitors.

cDNA sequences of all known coagulation factors and inhibitors of coagulation have been described and an enormous number of disease generating mutations in these factors has been found by genetic analysis of affected families. The vast majority of these defects have severe clinical consequences such as spontaneous bleeding or predisposition to venous thrombosis and pulmonary embolism. While all the genetic defects described so far cause disease, or at least represent a risk factor for diseases such as bleeding or thrombosis, only a minority of these conditions actually need DNA analysis to be detected and/or treated properly. The purpose of this review is therefore to describe clinical situations in which the knowledge of the underlying genetic defect is important for decision making in patients with inherited hemophilia or thrombophilia.