Le Cure Palliative a domicilio: quali modelli e quali evidenze Cure Palliative: definizione Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care: • provides relief from pain and other distressing symptoms; • affirms life and regards dying as a normal process; • intends neither to hasten or postpone death; • integrates the psychological and spiritual aspects of patient care; • offers a support system to help patients live as actively as possible until death; • offers a support system to help the family cope during the patients illness and in their own bereavement; • uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; • will enhance quality of life, and may also positively influence the course of illness; • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. Cure Palliative: definizione • Applicabili a tutte le condizioni di terminalità • Sostegno alla qualità della vita e all’indipendenza • Basate su un approccio multiprofessionale in equipe • Sostegno alla famiglia GERIATRIC PALLIATIVE MEDICINE (EUGMS - JAGS 2010, Sophie Pautex, Vito Curiale et al) GPM is the medical care & management of older patients with health-related problems and progressive, advanced disease for which the prognosis is limited and the focus of care is quality of life. Therefore GPM combines: • the principles and practice of geriatric medicine & PC • focuses on comprehensive geriatric assessment: – relief from pain and other symptoms – management of physical and psychological problems, integrating social, spiritual, & environmental aspects • recognizes the unique features of symptom & disease presentation, the interaction between diseases, the need for safe drug prescribing, & the importance of a tailored multidisciplinary approach for older patients receiving palliative care & their family • • • • • addresses the needs of older emphasizes the importance of autonomy, the & their families involvement inpatients decision-making, & the existence of across all settings (home, ethical dilemmas hospices, && calls for good long-term communicationcare, skills when discussing giving information to older patients & their families hospital) addresses •the needs older patients & their families paysofspecial attention to across all settings (home, long-term care, hospices, & transitions within/between hospital) settings of care;within/between and, offers a pays special attention to transitions settings of care; and, offers a supporttosystem support system helpto help families cope during the patient’s families cope terminal duringphase the of care patient’s terminal phase of care Where people die (1974-2030): past trends, future projections and implications for care Barbara Gomes & Irene Higginson, Palliative Medicine, 2008 Death statistics, age pyramids by age group and gender ♂ ♀ Where people die… Barbara Gomes & Irene Higginson, Palliative Medicine, 2008 Proportions of home deaths Where people die… Barbara Gomes & Irene Higginson, Palliative Medicine, 2008 ♂ ♀ Proportions of home deaths by gender Where people die… Barbara Gomes & Irene Higginson, Palliative Medicine, 2008 Proportions of home deaths by age group Factor influencing death at home in terminally ill patients with cancer: a systematic review Barbara Gomes & Irene Higginson, BMJ, 2006 Modelli di erogazione delle Cure Palliative a domicilio • Primary healthcare team • Hospice home care nurse • Multidisciplinary home care support team • Comprehensive hospital at home Primary healthcare team Medico di Medicina Generale + Risorse dei distretti • A domicilio • Nelle residenze protette • In Liguria: MMG + Cure Domiciliari I/II livello Hospice home care nurse • Sono modelli diffusi in UK: «Macmillan nurses» e «Marie Curie nurses» • Macmillan: consulenza, counseling, educazione, supporto, collegamento tra il territorio e i servizi specialistici, non offre aiuto pratico • Marie Curie: offre aiuto pratico nella fase terminale, ore di presenza e prestazioni per dare sollievo ai familiari Multidisciplinary home care support team • Team multiprofessionale: medici, infermieri, fisioterapisti, assistenti sociali e altri. • Hospital-based, community-based, hospice-based • I team possono essere specifici per problematiche: bambini, AIDS • A seconda dei modelli i team possono supportare le Cure Primarie e/o erogare cure direttamente e/o dare sollievo a ciclo diurno o di ricovero in hospice • In Liguria: associazioni no profit Comprehensive hospital at home • Ospedalizzazione a domicilio • E’ un servizio che si propone come alternativo al ricovero in ospedale o hospice • Possibilità di eseguire terapie complesse, gestione vie venose, trasfusioni, uso farmaci e presidi ospedalieri • Può essere di supporto al MMG o prendere in carico in modo esclusivo • In Liguria: Spedalizzazione Territoriale ASL3 e Galliera • In Lombardia: «passaggio in cura» AO Salvini di Garbagnate Milanese Revisioni Cochrane 1. Hospital at home: home based end of life care. Shepperrd, Wee, Straus. 2011 2. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Barbara Gomes, Natalia Calanzani, Vito Curiale, Paul McCrone, Irene J Higginson. 2012 in press Hospital at home: home based end of life care Shepperd, Wee, Straus. 2011 • Tipo di studi: RCT, CBA, ITS • Partecipanti: adulti con malattia in fase terminale che richiede cure di fine vita • Interventi: cure di fine vita a domicilio vs ospedale e/o hospice • Outcome: luogo del decesso, preferenza del paziente, controllo dei sintomi, tempo di attesa del servizio, stress dei caregiver, esaurimento dei caregiver, ansia del paziente e dei caregiver, ricoveri improvvisi Hospital at home: home based end of life care Shepperd, Wee, Straus. 2011 RISULTATI: studi inclusi Autore Brumley Grande Anno 2007 2000 Hughes 1992 Jordhøy 2000 Metodo RCT RCT Età (anni) 74 ± 12 Treatment 72 ± 11 Control 73 ± 14 RCT Treatment 65,7 Control 6,3 Cluster-RCT Treatment 70 (38-90) Control 69 (37-93) Luogo USA UK USA Norvegia favours control favours intervention Altri outcome Hospital at home: home based end of life care. Shepperd, Wee, Straus. 2011 • Sintomi: = • Soddisfazione: ↑ • Durata della degenza: ↓ • Uso di altri servizi: ↓ • Costi: ↓ • Caregiver: ↑ - ↓ dopo i 30 gg Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers Gomes, Calanzani, Curiale, McCrone, Higginson. 2012 in press • Tipo di studi: RCT & CCT (patient or cluster), CBA, ITS • Partecipanti: adulti con malattia in fase avanzata e loro carigiver • Interventi: Cure Palliative a domicilio vs approccio standard • Outcome: Decesso a domicilioAltri outome: tempo trascorso in ospedale, soddisfazione, sintomi , stato funzionale, qualità della vita, lutto, dati economici (costi ospedalieri e del territorio, costi per le famiglie, costi per farmaci e ausili) Types of interventions A team delivering home PC with the presence of 4 elements: 1. Primarily for patients with a severe and/or advanced malignant or non-malignant disease, no longer responding to curative/maintenance treatment and/or is symptomatic, or their lay caregivers, or both; interventions that did not directly deliver care to patients or caregivers were excluded. 2. Aiming to support patients or caregivers, or both, outside hospital and other institutional settings as far as possible and to enable patients to stay at home; services delivered in skilled nursing facilities, day care centres, residential homes or prisons were excluded. 3. Providing either specialist or intermediate palliative/hospice care. 4. Providing comprehensive care and aiming at different physical and psycho-social components of palliative care. Effectiveness and cost-effectiveness of home palliative care Gomes, Calanzani, Curiale, McCrone, Higginson. 2012 in press RISULTATI: studi inclusi 23 studi • • • • • • RCT: 13 Cluster-RCT: 3 CCT: 2 Cluster-CCT: 2 CBA: 2 ITS: 1 con CBA annidato Altri outcome • Tempo trascorso a domicilio: NS • Dolore e altri sintomi: modesto beneficio con gli interventi • Outcome relativi al caregiver: risultati contrastanti Soddisfazione: risultati contrastanti • Uso di risorse ospedaliere: NS • Risorse ambulatoriali: meno utilizzate con gli interventi • Farmaci, esami, procedure: + analgesici, - esami, - procedure invasiva con gli interventi • Costi: minori costi con gli interventi (18%-35%) • Costo/efficacia: ? Conclusioni • La probabilità di morire a domicilio è più che raddopiata nel paziente oncolgico e no • Effetto positivo sul controllo dei sintomi • Dubbi: maggior carico fisico ed emozionale sui caregiver