Implementation of the ID-PALL Assessment Tool for Palliative Care Needs: A Feasibility and Prevalence Study in a Tertiary Hospital.

Background: Identifying patients who require palliative care is a major public health concern. ID-PALL is the first screening instrument developed and validated to differentiate between patients in need of general versus specialized palliative care. Objectives: This study aimed to (1) evaluate user satisfaction and the facilitators and barriers for ID-PALL use and (2) assess the prevalence of patients who require palliative care. Design: A mixed methods study with an explanatory sequential design. Setting/Subjects: Over a six-month period, patients admitted to two internal medicine wards of a Swiss tertiary hospital were screened by nurses and physicians with ID-PALL, two to three days after hospitalization. Nurses and physicians completed a questionnaire and participated in focus groups. Results: Out of 969 patients, ID-PALL was completed for 420 (43.3%). Sixty percent of patients assessed needed general palliative care and 26.7% specialized palliative care. From the questionnaire and focus groups, five subthemes were identified concerning facilitators and barriers: organization, knowledge, collaboration, meaning, and characteristics of the instrument. ID-PALL was recognized as an easy-to-use and helpful instrument that facilitates discussion between health care professionals about palliative care. The difficulties in using ID-PALL in nurse-physician collaboration and the paucity of referrals to the palliative care team were highlighted. Conclusions: ID-PALL helped to identify a very high prevalence of palliative care needs among internal medicine patients in a tertiary hospital setting. Although regarded as helpful and easy to use, challenges remain concerning interprofessional implementation and inclusion of palliative care specialists, which may be met by automatic referrals in case of specialist needs.

Geriatric palliative care: a view of its concept, challenges and strategies.

In aging societies, the last phase of people's lives changes profoundly, challenging traditional care provision in geriatric medicine and palliative care. Both specialties have to collaborate closely and geriatric palliative care (GPC) should be conceptualized as an interdisciplinary field of care and research based on the synergies of the two and an ethics of care.Major challenges characterizing the emerging field of GPC concern (1) the development of methodologically creative and ethically sound research to promote evidence-based care and teaching; (2) the promotion of responsible care and treatment decision making in the face of multiple complicating factors related to decisional capacity, communication and behavioural problems, extended disease trajectories and complex social contexts; (3) the implementation of coordinated, continuous care despite the increasing fragmentation, sectorization and specialization in health care.Exemplary strategies to address these challenges are presented: (1) GPC research could be enhanced by specific funding programs, specific patient registries and anticipatory consent procedures; (2) treatment decision making can be significantly improved using advance care planning programs that include adequate decision aids, including those that address proxies of patient who have lost decisional capacity; (3) care coordination and continuity require multiple approaches, such as care transition programs, electronic solutions, and professionals who act as key integrators.

A consensus review on the development of palliative care for patients with chronic and progressive neurological disease.

BACKGROUND AND PURPOSE: The European Association of Palliative Care Taskforce, in collaboration with the Scientific Panel on Palliative Care in Neurology of the European Federation of Neurological Societies (now the European Academy of Neurology), aimed to undertake a review of the literature to establish an evidence-based consensus for palliative and end of life care for patients with progressive neurological disease, and their families. METHODS: A search of the literature yielded 942 articles on this area. These were reviewed by two investigators to determine the main areas and the subsections. A draft list of papers supporting the evidence for each area was circulated to the other authors in an iterative process leading to the agreed recommendations. RESULTS: Overall there is limited evidence to support the recommendations but there is increasing evidence that palliative care and a multidisciplinary approach to care do lead to improved symptoms (Level B) and quality of life of patients and their families (Level C). The main areas in which consensus was found and recommendations could be made are in the early integration of palliative care (Level C), involvement of the wider multidisciplinary team (Level B), communication with patients and families including advance care planning (Level C), symptom management (Level B), end of life care (Level C), carer support and training (Level C), and education for all professionals involved in the care of these patients and families (Good Practice Point). CONCLUSIONS: The care of patients with progressive neurological disease and their families continues to improve and develop. There is a pressing need for increased collaboration between neurology and palliative care.

Undergraduate palliative care teaching in Swiss medical faculties: a nationwide survey and improved learning objectives.

BACKGROUND: In 2007, a first survey on undergraduate palliative care teaching in Switzerland has revealed major heterogeneity of palliative care content, allocation of hours and distribution throughout the 6 year curriculum in Swiss medical faculties. This second survey in 2012/13 has been initiated as part of the current Swiss national strategy in palliative care (2010 - 2015) to serve as a longitudinal monitoring instrument and as a basis for redefinition of palliative care learning objectives and curriculum planning in our country. METHODS: As in 2007, a questionnaire was sent to the deans of all five medical faculties in Switzerland in 2012. It consisted of eight sections: basic background information, current content and hours in dedicated palliative care blocks, current palliative care content in other courses, topics related to palliative care presented in other courses, recent attempts at improving palliative care content, palliative care content in examinations, challenges, and overall summary. Content analysis was performed and the results matched with recommendations from the EAPC for undergraduate training in palliative medicine as well as with recommendations from overseas countries. RESULTS: There is a considerable increase in palliative care content, academic teaching staff and hours in all medical faculties compared to 2007. No Swiss medical faculty reaches the range of 40 h dedicated specifically to palliative care as recommended by the EAPC. Topics, teaching methods, distribution throughout different years and compulsory attendance still differ widely. Based on these results, the official Swiss Catalogue of Learning Objectives (SCLO) was complemented with 12 new learning objectives for palliative and end of life care (2013), and a national basic script for palliative care was published (2015). CONCLUSION: Performing periodic surveys of palliative care teaching at national medical faculties has proven to be a useful tool to adapt the national teaching framework and to improve the recognition of palliative medicine as an integral part of medical training.

French Swiss physicians' attitude toward palliative sedation: Influence of prognosis and type of suffering.

OBJECTIVE: Palliative sedation is a last resort medical act aimed at relieving intolerable suffering induced by intractable symptoms in patients at the end-of-life. This act is generally accepted as being medically indicated under certain circumstances. A controversy remains in the literature as to its ethical validity. There is a certain vagueness in the literature regarding the legitimacy of palliative sedation in cases of non-physical refractory symptoms, especially "existential suffering." This pilot study aims to measure the influence of two independent variables (short/long prognosis and physical/existential suffering) on the physicians' attitudes toward palliative sedation (dependent variable). METHODS: We used a 2 × 2 experimental design as described by Blondeau et al. Four clinical vignettes were developed (vignette 1: short prognosis/existential suffering; vignette 2: long prognosis/existential suffering; vignette 3: short prognosis/physical suffering; vignette 4: long prognosis/physical suffering). Each vignette presented a terminally ill patient with a summary description of his physical and psychological condition, medication, and family situation. The respondents' attitude towards sedation was assessed with a six-point Likert scale. A total of 240 vignettes were sent to selected Swiss physicians. RESULTS: 74 vignettes were completed (36%). The means scores for attitudes were 2.62 ± 2.06 (v1), 1.88 ± 1.54 (v2), 4.54 ± 1.67 (v3), and 4.75 ± 1.71 (v4). General linear model analyses indicated that only the type of suffering had a significant impact on the attitude towards sedation (F = 33.92, df = 1, p = 0.000). Significance of the results: The French Swiss physicians' attitude toward palliative sedation is more favorable in case of physical suffering than in existential suffering. These results are in line with those found in the study of Blondeau et al. with Canadian physicians and will be discussed in light of the arguments given by physicians to explain their decisions.

Existential behavioural therapy for informal caregivers of palliative patients: a randomised controlled trial.

BACKGROUND: Existential behavioural therapy (EBT) was developed to support informal caregivers of palliative patients in the last stage of life and during bereavement as a manualised group psychotherapy comprising six sessions. We tested the effectiveness of EBT on mental stress and quality of life (QOL). METHODS: Informal caregivers were randomly assigned (1:1) to EBT or a treatment-as-usual control group using computer-generated numbers in blocks of 10. Primary outcomes were assessed with the Brief Symptom Inventory (subscales somatisation, anxiety and depression), the Satisfaction with Life Scale (SWLS), the WHOQOL-BREF and a numeric rating scale for QOL (QOL-NRS, range 0-10). Data were collected at baseline, pre-treatment, post-treatment and follow-ups after 3 and 12 months. Treatment effects were assessed with a multivariate analysis of covariance. RESULTS: Out of 160 relatives, 81 were assigned to EBT and 79 to the control group. Participants were 54.5 ± 13.2 years old; 69.9% were female. The multivariate model was significant for the pre-/post-comparison (p=0.005) and the pre-/12-month comparison (p=0.05) but not for the pre-/3-month comparison. Medium to large effects on anxiety and QOL (SWLS, WHOQOL-BREF, QOL-NRS) were found at post-treatment; medium effects on depression and QOL (QOL-NRS) emerged in the 12-month follow-up. No adverse effects of the intervention were observed. CONCLUSION: Existential behavioural therapy appears to exert beneficial effects on distress and QOL of informal caregivers of palliative patients. Further longitudinal evidence is needed to confirm these findings.

Palliative Care teaching in Germany - concepts and future developments.

BACKGROUND: Following recent modifications of the Medical Licensure Act (ÄApprO) in the year 2009, palliative care was introduced as a compulsory 13(th) cross-disciplinary subject (Q13) in the undergraduate curriculum. Its implementation must have taken place before the beginning of the final year ('practical year') in August 2013 and has to be substantiated for the medical exams taking place in October 2014. Very diverse structures pertaining to palliative care teaching were described in previous surveys at various medical faculties in Germany. As a result, the current and future plans and concepts related to content and exams of a mandatory Q13 course at the respective faculty sites should be ascertained. METHODS: Since 2006, the German Medical Students' Association (bvmd) has been carrying out a bi-annual survey at all medical faculties in Germany regarding the current situation of teaching in the field of palliative care. After designing and piloting an online survey in May 2010, a one-month online survey took place. The data was assessed using a descriptive approach. RESULTS: 31 of 36 medical faculties took part in the survey. At the time of questioning, 15 faculties already taught courses according to the requirements of the new ÄApprO; at three sites the Q13 is yet to be introduced commencing in 2012. A teaching curriculum for Q13 already existed at 15 faculty sites, partly based on the curricular requirements of the German Association for Palliative Medicine (DGP). Six sites described an implementation process as yet without an independent curriculum. Most of the faculties aim for 21-40 course hours, which will for the most part be provided as lectures, seminars or less often in more assisted and intense formats. The majority of the participating faculties intend an examination containing multiple choice questions. At 8 universities there is an independent Chair for palliative medicine (5 more are planned); this was linked with a higher degree of mandatory teaching in alignment with the requirements of the ÄApprO. A broad spectrum of educationally-involved occupational groups, specialist disciplines and external co-operating partners, were mentioned. CONCLUSION: The infrastructural prerequisites of the present curricular concepts and the degree of implementation of the Q13 according to the requirements of the new ÄApprO diverge significantly among the various medical faculties. The efforts made to produce a qualitatively high standard of teaching with regard to the multifaceted questions concerning the support for severely and terminally ill patients is as much reflected in the survey, as the special implications of an independent Chair for palliative medicine for the implementation of the requirements by law. The participation of various occupational groups in this survey as well as the broad spectrum of those involved highlights the interdisciplinary and multi-professional dimension of teaching in palliative care.

[Changing the treatment goal at the end of life: effects of a guideline at a hospital]. / Änderung des Therapieziels am Lebensende: Effekte einer Klinik-Leitlinie.

BACKGROUND AND OBJECTIVE: Deciding about treatment goals at the end of life is a frequent and difficult challenge to medical staff. As more health care institutions issue ethico-legal guidelines to their staff the effects of such a guideline should be investigated in a pilot project. PARTICIPANTS AND METHODS: Prospective evaluation study using the pre-post method. Physicians and nurses working in ten intensive care units of a university medical center in Germany answered a specially designed questionnaire before and one year after issuance of the guideline. RESULTS: 197 analyzable answers were obtained from the first (pre-guideline) and 251 from the second (post-guideline) survey (54 % and 58 % response rate, respectively). Initially the clinicians expressed their need for guidelines, advice on ethical problems, and continuing education. One year after introduction of the guideline one third of the clinicians was familiar with the guideline's content and another third was aware of its existence. 90% of those who knew the document welcomed it. Explanation of the legal aspects was seen as its most useful element. The pre- and post-guideline comparison demonstrated that uncertainty in decision making and fear of legal consequences were reduced, while knowledge of legal aspects and the value given to advance directives increased. The residents had derived the greatest benefit. CONCLUSION: By promoting the knowledge of legal aspects and ethical considerations, guidelines given to medical staff can lead to more certainty when making in end of life decision.

[Specialised palliative home care (SAPV) in an urban setting--a first year experience]. / Ein Jahr Spezialisierte Ambulante Palliativversorgung (SAPV) im städtischen Ballungsraum.

PROJECT DESCRIPTION: The Palliative Home Care Team of the InterdisciplinaryCenterfor Palliative Medicine at Munich University Hospital has been providing Specialized Home Palliative Care (German abbreviation: SAPV) according to the new German regulations since October 2009. RESULTS: Out of 267 requests, 178 patients were accepted for SAPV, 33 thereof at the level of care coordination and 140 as partial or total home palliative care including 24-h, 7/7 on-call duty. Of the latter group, 90 died at home, 19 in a palliative care unit or hospice and one on a hospital ward.The place of death corresponded to the patients' wishes in 98% of cases. Altogether, emergency medical services other than the SAPV team were called upon in 7 cases, and 12 patients were admitted to a general hospital ward. More than a quarter of our patients had non-oncological diagnoses.The proportion of work dealing with family members (21%) was higher than the patient-related one (19%). The highest percentage (37%) represented office work. CONCLUSIONS: The requirement for SAPV in the urban setting is high, in spite of the intensive primary care, with an increasing proportion of non-oncological patients. A key aspect concerns the work with family members. SAPV can minimize the number of hospital admissions and emergency calls. The patient's wishes concerning the place of death can be fulfilled. Feed-back from patients and family members indicates that SAPV makes an important contribution towards removing the taboo associated with death and dying.

A new law on advance directives in Germany.

This article presents the new German law on advance directives from 1 September 2009. The history of the parliamentary process of this law is described, the present regulations are explained, their relevance for medical practice discussed and shortcomings are identified. Finally, the new law is compared with other regulations in the international context. Previously established legal practice in Germany has now become largely confirmed by the new law: An advanced directive must be respected in any decision concerning medical treatment, regardless of the stage of the illness. It can be informally revoked at any time, even with limited decision-making capacity. Nobody may be obliged to issue a directive in any way. Advance directives do not need notarisation or routine updating after certain time intervals. Provided that the patient, who is no longer mentally competent, has issued a lasting power of attorney (Bevollmächtiger), or provided that the patient has been appointed a healthcare proxy by the courts (Betreuer), this authorized surrogate must assert the patient's will. The role of the guardianship court is clarified: it only needs to be involved in cases of disagreement as to the patient's will. The new German law thus combines more legal certainty with a liberal emphasis on patient autonomy and flexible, adaptable regulations.

[Dying demented. Concepts of care and palliative medicine]. / Sterben mit Demenz. Versorgungssituation und palliativmedizinischer Ausblick.

A third of the elderly population dies with dementia. This poses major and partly unmet needs on relatives, professional carers and medical specialists. Our review summarizes epidemiological risk factors for the increased mortality in demented patients (age, somatic co-morbidity, neuropsychiatric symptoms), current practice (place of death, decision making, complications, medical treatment, course of dying, cause of death, suicide, bereaved relatives), and instruments for the assessment of pain, burden, prognosis and treatment planning in the terminal stage of illness. We describe the current legal situation in Germany and present a brief outline of practical management issues. We also list a number of areas offering leeway for improvement regarding research, training, psycho-education, preparation, diagnosis, treatment and support.

[End-of-life decisions, powers of attorney, and advance directives]. / Entscheidungen am Lebensende, Vorsorgevollmacht und Patientenverfügung.

In modern medicine, decisions about the kind of treatment at life's end are often inevitable. According to German law, powers of attorney and advance directives can be of help in these decisions. When a patient in a state of competence has issued a lasting power of attorney, there is no need for courts to appoint a proxy, and physicians immediately have a legally empowered decision-maker they can address. According to current German law, advance directives are legally valid and binding expressions of a patient's will. They are, however, more powerful when issued after consultation with a physician. If treatment at life's end no longer complies with the patient's will or loses its medical indication, the goal of treatment should be redirected towards palliation. This implies that life-sustaining treatment may be withdrawn or withheld, which is best accomplished with sensitivity to the needs of patients, relatives, and health care professionals.