Palliative care for stroke patients experience from the regional organization of care Ladislav Kabelka, Václav Vybíhal, Eduard Minks
Goals: Stroke management description - CR Post-stroke: What is the life in CR with? When and why SPC? Regional co-operation, categorization system Closing remarks
Czech MoH 12/2012 Triage of stroke patients complex stroke centres (faculty hospitals), stroke units CAVE: Devastated (serious) neurological deficit GRAY ZONE very low interest of neurologists WHO IS RESPONSIBLE for care? Insufficient LTC Very low support in home care!
Life with post-stroke syndrome physical handicap communication deficit nutrition problems social isolation nursing and medical complications NEED of professional supervision symptoms..
Symptoms with post-stroke syndrome Dyspnoea or dyspnoea behaviours 81% Pain or pain behaviours 69% Mouth dryness 62% Constipation 38% Anxiety/sadness 26% Delirium 14% Sleep disorders 12% Mazzocato et al (2010) The last days of dying stroke patients. European Journal of Neurology. 17 (73 77)
Czech Republic PC in stroke? Prague Brno Rajhrad Vienna direction St. Joseph s hospice Rajhrad South Moravia region - 7 065 km2, 1 140 000 inhabitans
St. Joseph s hospice Rajhrad 50 beds, home care programme 2 psychologists, 5 physicians (3 with specialization in palliative medicine), 1 professional care-giver for 2-3 patients (per day care), 3 physiotherapists, 2 spiritual advisors, 2 social workers, voluntaries programme (35 voluntaries in the beginning of May 2013), family advisor programme. 2012-530 admissions, 480 died, the average hospitalization long 33 days, the median 13 days. We had 58 patients last year who came to hospice only for hours of care (less 24 hours). We co-operate with about 20 residential houses, 15 hospitals, several home care teams out of our nearest region (30 km round the hospice) and 3-4 hospices. Day cost for inpatient care is 2200 crowns per day (cca 90 Euros), patients pay 13 Euros per day, health care insurance 50 Euros per day. St. Joseph s hospice 50 beds facility, home care services, quite large non- cancer palliative care programme Europenian project: Education for the staff taking palliative care on the patients with advanced dementia
2012-2013 St.Joseph s hospice Rajhrad + Faculty Hospital Sv.Anna Brno (Department of anestheziology, Department of neurology) Goals of categorization early developing Plan of SPC Improving knowledge and attitudes for other departments of FH Continuity of care, taboo professionals, families early set PC= suffering, prepare to bereavment
The categorization in days or weeks Devastated (serious) neurological deficit: semicoma or coma, locked in syndrom quadruplegie + paresis of breathing muscles global aphasia + dextral hemiplegie sinistral hemiplegie, neglect syndrom with biologically old old person Complications: Old old, dementia, dominant hemisphere, coma
Who does a categorization? Acute care: 2 neurologists, anesteziologists involved (at least), within days the whole team Family informed, involved in decisions Documentation from all discussions in team (care planning), with family
How? Documentation? Start of palliative care formulary Faculty Hospital Epicrisis: Based on the assessment of health status we are starting palliative care. Reasons: Patient despite maximum support and compensation for organ function leads to a permanent deterioration of health, from the reason of the underlying diseases are not medically influenced and the patient is in end stage of life threatening disease Ongoing support for the organ functions including cardiopulmonary resuscitation we consider to be futile The patient has signs of irreversible damage to the central nervous system The risk of complications, pain, discomfort when other treatment outweigh the real clinical benefit and risk the QoL for patient and family The plan of care: eg completition of antibiotic therapy norepinephrine dose of 0 0.1 ug / kg / min spontaneous breathing through a tracheal tube oxygen with FiO2 0.3 nursing care Analgesia, opioids On the decision to initiate palliative therapy participated in the affirmative opinion: Signature:...... Signature:......
Admission criteria post stroke syndrome St.Joseph s hospice EEG, CT, clinical state Indication from contemporary caring physician PLAN of palliative care Communication with the family before admission (discussing the goals of care)
Intensive nursing care unit Categorisation condition: DNR (anesteziologist + neurologist) withhold theraphy don t use the ICU Diagnostic groups: Post-stroke syndrome Coma vigile Kranio-cerebral injuries Multiorgan failure Last stages of dementia
Chronic diseases and nutrition we have weeks Alb 30 g/l TP 60 g/l or normal Alb 25 30 g/l TP 60 g/l or normal Alb 25 30 g/l TP 55 60 g/l Alb lower 25 g/l TP lower 55 g/l 1. Moderate risk: weeks of malnutrition oral intake? progress of disease? Try to improve oral intake, nutritional intervention 2. High risk of deterioration: weeks of malnutrition Multidisciplinary care essential 3. Deterioration failure to thrive terminal phase of life only months of prognosis 4. Terminal state only days, weeks of prognosis + fyziotherapy + other symptoms management CAVE un-treated pain + cognitive impairment do we have solution? + social and spiritual needs + family supoort
The expression of frailty could be a pathogenetic mechanism of ongoing deterioration (Z.Kalvach) Chronic inflamatory state, chronic hypercoagulation Insulin resistence and metabolic syndrome Anorexie, malnutrition, cachexy Low motivation to basic and wider living activities Chronic diseases and their handicap results DM, COPD, CHF, Dementia Dysfunction of auton.n.s. synkope, falls, sarkopenie, decubites, anorexie, cachexy, inkontinence, delirium, thermoregulation Apatie dopamin Anxiety, depression, dementia Hormonal declines (ADAM,PADAM, STH, IgG) Chronic pain Side effects of drugs anorexie, sedation, instability, fatique Chronic stress
Multidisciplinary evaluation of prognosis
Palliative non-cancer index (St. Joseph s hospice and pain centre Rajhrad, CR) Nutrition (albumin, TP, Leu, Lymf, day caloric intake, ulcers, muscle atrofie) Index (%)of chronic diseases activity Physiotheraphy status Pain syndrom (VAS ) Dyspnea (VAS ) Kabelka L., Institut for palliative medicine CSPM CMA JEP
Palliative non-cancer index (St. Joseph s hospice and pain centre Rajhrad) Cognitive status delirium Social adaptation conditions Kubler Ross conditions Life motivation, spontaneity Spiritual conditions, logotheraphy
Stroke patients and their families.. COPING CHANGE process in palliative medicine Kübler Ross and Kessler (1969): 1. Denial 2. Anger 3. Bargaining 4. Depression 5. Acceptance Process in stroke for months also years Very personal tempo of everybody in the team of the life with disease Long term state of oscillation between 2 4 Lots of emotions and consequences
Closing remarks: Stroke can be very often a condition with a need of specialized palliative care Especially in connection with previous chronical disease
Closing remarks: Already in days there is necessary make the multiprofessional evaluation
Closing remarks: Don t think about a time prognosis think about an appropriate care
Closing remarks: Family burden is hard to cope and heavy to carry on Don t leave the family if in ICU, LTC or home care
Closing remarks: Make an effective collaboration with an acute care hospitals in your region To prevent suffering!
Contacts: Ladislav Kabelka, MD, PhD. Phone: +420737230772 E-mail: ladislav.kabelka@charita.cz Medical Director St. Joseph s Hospice, Rajhrad Jiraskova 47, 66461 Czech Republic www.rajhrad.charita.cz President Czech Society for Palliative Medicine CMA JEP Jiraskova 47, 66461 Czech Republic www.paliativnimedicina.cz Thank you for the attention