Le Cure Palliative a domicilio: quali modelli e quali evidenze Vito Curiale

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. Le Cure Palliative

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 patients & their families across all settings (home, long-term care, hospices, & hospital) pays special attention to transitions within/between settings of care; and, offers a support system to help families cope during the patient’s terminal phase of care emphasizes the importance of autonomy, the involvement in decision-making, & the existence of ethical dilemmas calls for good communication skills when discussing & giving information to older patients & their families addresses the needs of older patients & their families across all settings (home, long-term care, hospices, & hospital) pays special attention to transitions within/between settings of care; and, offers a support system to help families cope during the patient’s terminal phase of care

Death statistics, age pyramids by age group and gender 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 ♂ ♀

Proportions of home deaths Where people die… Barbara Gomes & Irene Higginson, Palliative Medicine, 2008 Proportions of home deaths

Proportions of home deaths Where people die… Barbara Gomes & Irene Higginson, Palliative Medicine, 2008 ♂ ♀ Proportions of home deaths by gender

Proportions of home deaths by age group 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 I modelli

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

Le evidenze Revisioni Cochrane Hospital at home: home based end of life care. Shepperrd, Wee, Straus. 2011 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 Le evidenze

Hospital at home: home based end of life care Shepperd, Wee, Straus 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 Hospital at home: home based end of life care Shepperd, Wee, Straus. 2011 RISULTATI: studi inclusi Autore Anno Metodo Età (anni) Luogo Brumley 2007 RCT 74 ± 12 USA Grande 2000 Treatment 72 ± 11 Control 73 ± 14 UK Hughes 1992 Treatment 65,7 Control 6,3 Jordhøy Cluster-RCT Treatment 70 (38-90) Control 69 (37-93) Norvegia

Death at Home favours control favours intervention

Altri outcome Sintomi: = Soddisfazione: ↑ Durata della degenza: ↓ 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

Tipo di studi: RCT & CCT (patient or cluster), CBA, ITS 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: 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. 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. Providing either specialist or intermediate palliative/hospice care. Providing comprehensive care and aiming at different physical and psycho-social components of palliative care.

RISULTATI: studi inclusi 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

Death at Home

Death in Hospital

Death in Nursing Home

Death in Hospice

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 Three decades of research on the effectiveness of home palliative care resulted in clear evidence of the benefit 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

Grazie per l’attenzione curiale@libero.it