Palliative Care in Advanced Dementia.

Dementia syndrome is common and expected to increase significantly among older people and characterized by the loss of cognitive, psychological and physical functions. Palliative care is applicable for people with dementia, however they are less likely to have access to palliative care. This narrative review summarizes specifics of palliative care in advanced dementia. Most people with advanced dementia live and die in institutional care and they suffer a range of burdensome symptoms and complications. Shortly before dying people with advanced dementia suffer symptoms as pain, eating problems, breathlessness, neuropsychiatric symptoms, and complications as respiratory or urinary infections and frequently experience burdensome transitions. Pharmacological and nonpharmacological interventions may reduce symptom burden. Sensitive observation and appropriate assessment tools enable health professionals to assess symptoms and needs and to evaluate interventions. Due to lack of decisional capacity, proxy decision making is often necessary. Advanced care planning is an opportunity establishing values and preferences and is associated with comfort and decrease of burdensome interventions. Family carers are important for people with advanced dementia they also experience distress and are in need for support. Recommendations refer to early integration of palliative care, recognizing signs of approaching death, symptom assessment and management, advanced care planning, person-centered care, continuity of care, and collaboration of health care providers.

Hirudotherapy attenuates arthritic pain in patients with various chronic pain syndromes: A retrospective analysis.

OBJECTIVE: Osteoarthritis is a degenerative disease that affects synovial joints. Micro-injuries of articular structures initiate inflammatory processes, leading to persistent pain. Due to various risk factors, osteoarthritis is often diagnosed in multimorbid patients. This makes pain management one of the key challenges, with a consistent need for new therapeutic strategies. Hence, complementary and integrative methods such as hirudotherapy have become increasingly important, even though their mechanisms of action are not entirely understood. METHODS: We retrospectively analyzed the longitudinal effect of a single leech application on osteoarthritic joints in a heterogenic cohort of 24 cases with various chronic pain syndromes. We assessed articular pain intensity ratings and movability of the treated joint after one-time leeching for up to 12 months. We further investigated the effect of hirudotherapy on the systemic pain status and multimodal treatment strategies of the patients. RESULTS: There was a significant reduction in pain intensity ratings at the joint of leech application for up to 12 months after treatment. The improvements in pain intensities were independent of the form of osteoarthritis treated. In addition, we saw a considerable enhancement in local movability of the treated joint. Hirudotherapy did not seem to influence the systemic pain status as well as the previously established individualized multimodal treatment model of the patients. CONCLUSION: Leeching as an adjuvant therapy has a great potential especially in terms of safety and long-term outcome.

The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach.

BACKGROUND: Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical approach was developed. This study aimed for a revision of and consensus building on the clinical approach to support proactively addressing desire to die and routine exploration of death and dying distress. METHODS: Within a sequential mixed methods design, we invited 16 palliative patients to participate in semi-structured interviews and 377 (inter-)national experts to attend a two-round Delphi process. Interviews were analyzed using qualitative content analysis and an agreement consensus for the Delphi was determined according to predefined criteria. RESULTS: 11 (69%) patients from different settings participated in face-to-face interviews. As key issues for conversations on desire to die they pointed out the relationship between professionals and patients, the setting and support from external experts, if required. A set of 149 (40%) experts (132/89% from Germany, 17/11% from 9 other countries) evaluated ten domains of the semi-structured clinical approach. There was immediate consensus on nine domains concerning conversation design, suggestions for (self-)reflection, and further recommended action. The one domain in which consensus was not achieved until the second round was "proactively addressing desire to die". CONCLUSIONS: We have provided the first semi-structured clinical approach to identify and address desire to die and to respond therapeutically - based on evidence, patients' views and consensus among professional experts. TRIAL REGISTRATION: The study is registered in the German Clinical Trials Register (DRKS00012988; registration date: 27.9.2017) and in the Health Services Research Database (VfD_DEDIPOM_17_003889; registration date: 14.9.2017).

Communication about the desire to die: Development and evaluation of a first needs-oriented training concept - A pilot study.

OBJECTIVE: Patients' desire to die (DD) is rarely discussed in palliative care (PC) due to health professionals' (HPs) feeling of uncertainty. The aim of the study was to develop and evaluate a training to increase HPs' self-confidence in responding professionally to patient's DD and to assess the feasibility of this approach. METHODS: The training course was developed via focus groups and relevant literature and refined with an advisory board. An evaluation design was developed to evaluate training outcomes and to examine feasibility. To assess self-confidence, knowledge, skills, and attitudes: (1) standardized surveys were applied at T1 (before training), T2 (directly after), and T3 (3 months later), and were analyzed by descriptive and non-parametric statistics; and (2) participants' open feedback was summarized by content. RESULTS: A two-day multi-disciplinary training was developed to improve self-confidence via diverse teaching methods. Twenty-four HPs from general and specialized PC were participated. Via self-rating on Likert scales at three time points, improvements were seen at T1, T2, and partly remained at T3, especially in the overall item of self-confidence in communicating with patients about their DD (means: 4.3. at T1, 5.7 at T2, and 5.9 at T3; on a 7-point scale with 1 = lowest value and 7 = highest value). Fewer improvements were found in skills (using different approaches) and attitudes (feeling less helplessness). Open feedback revealed a high appreciation for the training, especially the composition of participants, the role-play, and the overall increase of awareness of the topic. SIGNIFICANCE OF RESULTS: The developed training on addressing DD meets a need and was perceived by the participants to be of added value. Future research should measure training effects with a validated instrument, including more participants, diverse participant groups, and a control group. Effects on patients should be assessed.

Needs of people with advanced dementia in their final phase of life: A multi-perspective qualitative study in nursing homes.

BACKGROUND: People with advanced dementia present an important target group for palliative care. They suffer a range of symptoms, and their verbal communication abilities are highly restricted. At present, little is known about their needs in the final phase of life. AIM: To identify the needs of people with advanced dementia in their final phase of life and to explore the aspects relevant to first recognize and then meet these needs. DESIGN: Multi-perspective qualitative study using grounded theory methodology conducting group discussions, individual interviews, and participant observation. SETTING/PARTICIPANTS: The study encompassed nursing homes and involved health professionals, relatives, and residents with advanced dementia. RESULTS: Data were collected in six nursing homes. Nine group discussions and three individual interviews were conducted comprising 42 health professionals and 14 relatives. Participant observations aided in giving the perspective of 30 residents with advanced dementia. Data analysis generated a total of 25 physical, psychosocial, and spiritual needs divided into 10 categories. Physical needs were classified as follows: "food intake," "physical well-being," and "physical activity and recovery." Categories of psychosocial needs were classified as follows: "adaptation of stimuli," "communication," "personal attention," "participation," "familiarity and safety," as well as "self-determination." Spiritual needs addressed "religion." The results revealed a multitude of key aspects for recognizing and meeting these needs, stressing the importance of personhood. CONCLUSION: People with advanced dementia in their final phase of life have a multitude of individual and complex needs. This evidence contributes to narrowing the current research gap, offering an orientation framework for research and practice.

Risk Factors for Suicidal Ideation in Patients Feeling Severely Affected by Multiple Sclerosis.

BACKGROUND: Being severely affected by multiple sclerosis (MS) brings substantial physical and psychological challenges. Contrary to common thinking that MS is not lethal, there is a higher mortality risk in patients also reflected in alarming rates of assisted suicide, and - where possible - euthanasia. OBJECTIVE: Analyzing independent variables promoting suicidal ideation in severely affected MS patients. DESIGN: A self-report questionnaire with 25 needs categories including one self-assessment item "prone to suicidal ideation" was applied. SETTING/SUBJECTS: Included were patients reporting feeling subjectively severely affected by MS. Of 867 patients addressed, 573 (66.1%) completed the questionnaires. MEASUREMENTS: 32 items being potential risk factors for suicidal ideation were tested for statistical significance using a multivariate logistic regression model with stepwise, backward elimination procedure. RESULTS: 22.1% of 573 patients (median age 51, range 20-83) had suicidal ideation. 48.4% suffered from secondary progressive, 24.7% from relapsing-remitting and 21.9% from primary progressive MS. A set of six statistically significant criteria for suicidal ideation were found. Three items were risk factors for suicidal ideation: the extent to which MS affects leisure time (p < 0.001), depression (p < 0.000), and feeling socially excluded (p < 0.002). Three items reduced the odds of suicidal ideation: having a purpose in life (p < 0.000), being productive (p < 0.000), and having comfort in faith and spiritual beliefs (p < 0.024). CONCLUSION: This study identified potentially modifiable factors that may help preventing suicide in people with MS. Integrating palliative care (PC) with its multidisciplinary approach could be beneficial to reduce patient's burden.

Needs of people with severe dementia at the end-of-life: a systematic review.

BACKGROUND: Epidemiological data shows an increasing number of people affected by dementia. It is mentioned that people with severe dementia have special care needs which are intensified at the end-of-life. OBJECTIVE: This paper offers a systematic analysis of the current status of research on the needs of people with severe dementia in the last phase of their lives. METHODS: A systematic review of the MEDLINE, CINAHL, Cochrane Library, PsycINFO, and AMED databases performed up to April 2014 was further expanded by contacting experts, conducting internet searches, and screening relevant reference lists. Studies were screened according to defined criteria and appraised for methodological quality. Findings were then synthesized using a narrative thematic approach to identify and categorize relevant needs into thematic categories and subcategories. RESULTS: A total of ten studies published from 1993-2013 were identified, encompassing qualitative (n = 7), quantitative (n = 2), and a mixed-methods study (n = 1). Data synthesis yielded seven themes, with physical, social, and psychological needs the categories most frequently mentioned. Other categories were spiritual, supportive, and environmental needs and needs related to individuality. Needs were often named, but what they entailed operationally was not highlighted in detail. CONCLUSION: This systematic review shows the paucity of empirical findings on the needs of people with severe dementia. The structured presentation of thematic categories points to a clearer delineation of these needs. Thus, this overview emphasizes the topics for future research and can likewise serve as an orientation for care provision.

Palliative treatment of chronic neurologic disorders.

Patients with chronic neurologic disorders suffer from the burden of disease progression without the hope for a cure. Therefore, symptom management and palliative care approaches should be included from the beginning of the illness. Palliative care aims at improving a patient's quality of life by alleviating suffering due to physical, psychosocial, and spiritual factors. Since no curative and only limited life-prolonging treatment options are available for most chronic neurologic disorders, a palliative care approach can help to create a treatment plan that considers all aspects of the disease. We have provided palliative care approaches for the most common neurodegenerative disorders like dementia, multiple sclerosis, Parkinson's disease, and amyotrophic lateral sclerosis. A palliative approach to neurologic disorders does not simply mean limiting treatment and focusing on pain. Instead, the whole unit of care, consisting of the patient, relatives, and caregivers, should be perceived with all their needs.

Dying with dementia: symptom burden, quality of care, and place of death.

BACKGROUND: No detailed information has been available until now about the care setting, circumstances and place of death, symptom burden, and quality of care of persons with end-stage dementia in Germany. METHODS: This cross-sectional study is based on a random sample of 5000 persons who died in the period from 25 May to 24 August 2008 in the German federal state of Rhineland-Palatinate. Their surviving relatives were contacted and asked to participate in a questionnaire survey. Data were obtained in this way for 310 persons with dementia and 931 persons without dementia. RESULTS: 42.4% of the persons with dementia died at home. Most patients and their relatives preferred death at home to death anywhere else (94.8% of patients, 77.5% of relatives). Persons living with at least one relative were more likely to die at home (adjusted odds ratio [aOR] 4.69, 95% confidence interval [CI] 2.71-8.11). According to information supplied by the relatives, the overwhelming majority of patients suffered, two days before death, from moderate to severe weakness (94.9%), fatigue (94.4%), disorientation/confusion (86.9%), and appetite loss (86.4%). Other common symptoms were anxiety (61.0%), tension (59.9%), dyspnea (56.7%), and pain (52.5%). The relatives were critical of the quality of care on standard hospital wards, citing the limited temporal availability of staff and limited emotional support. CONCLUSION: These data indicate the high symptom burden of persons with dementia in Germany at the end of their lives. They underscore the need for proper palliative care in all of the settings where persons with dementia die. Specialized in- and outpatient palliative care should not be offered only to patients with cancer, but should rather be made available to all who need it.