• Aucun résultat trouvé

INTEGRATION OF PALLIATIVE CARE ALONG THE COURSE OF DISEASE AND ACROSS ALL SETTINGS OF CARE

PRINCIPLES, DEFINITIONS AND CONCEPTS

INTEGRATION OF PALLIATIVE CARE ALONG THE COURSE OF DISEASE AND ACROSS ALL SETTINGS OF CARE

In the evolution of progressive illnesses or conditions with a limited life prognosis, there are several phases, from the initial complex condition, followed by the so-called first transition – when the disease progresses and there is a limit in life prognosis – and the end of life or terminal phase .

Each of these situations has specific characteristics, and there is a need to adapt the clinical, ethical, and organizational goals to their needs and demands, from care more focused on disease-modifying, supportive, rehabilitation, and curative approaches, with active interventions of specialist services, towards the gradual increase in the palliative approach and palliative care from the beginning, with interaction between palliative care and primary care services (Figure 4) .

Figure 4. Adapting the clinical, ethical & organizational perspectives of palliative approach

& palliative care to phases in the evolution of persons with advanced chronic conditions and limited life prognosis

The model of identification and intervention needs to change from a late (last 2-3 months of life), institutional (based on specialist services), reactive to crisis, based on hospitals and emergencies, and fragmented approach towards a model of timely, planned and preventive, community-based care, based on advance care planning and case management, and integrated in all settings with pathways (Figure 5) .

Figure 5. Models of palliative interventions in chronic advanced palliative care

FURTHER RECOMMENDED READING

BarretoP, Bayés R, Comas MD, et al . Assessment of the perception and worries in terminally ill patients in Spain . J Palliat Care 1996; 12(2): 43-46 .

Boyd K, Murray SA . Recognising and managing key transitions in end of life care . BMJ 2010;341:649-652 .

Breitbart W . Reframing hope: meaning-centered care for patients near the end of life . Interview by Karen S . Heller . J Palliat Med 2003; 6(6): 979-988 . Cassell EJ . The nature of suffering and the goals of medicine . New Engl J Med

1982; 306(11): 639-645 .

Cherny N, Fallon M, Kaasa S, Portenoy R, Currow D . 2015 . Oxford Textbook of Palliative Medicine . London: Oxford University Press .

Chochinov HM . Dignity and the essence of medicine: the A, B, C and D of dignity conserving care . BMJ 2007; 335(7612):184-187 .

Connor, S . Hospice and Palliative Care: The essential guide . 2009 . New York:

Routledge Taylor and Francis Publishers .

Ferris FD, Balfour HD, Bowen K, et al . A model to guide patient and family care:

based on nationally accepted principles and norms of practice . J Pain Symp-tom Manage 2002; 24(2): 106-123 .

Frankl VE . Man’s search for meaning . 1st ed . Boston: Beacon;1992 .

Gómez-Batiste X, Espinosa J, Porta-Sales J, et al . Modelos de atención, organización y mejora de la calidad para la atención de los enfermos en fase terminal y su familia: aportación de los cuidados paliativos . Med Clin 2010; 135(2): 83-89 . Kearney M, Mount B . Spiritual care of the dying patient . Handbookof

psychia-try in palliative medicine . New York: Oxford University Press; 2000 .

Krikorian A, Limonero JT . An integrated view of suffering in palliative care . J Palliative Care 2012; 28(1): 41-49 .

Maté-Méndez J, González-Barboteo J, Calsina-Berna A, Mateo-Ortega D, Codor-niu-Zamora D, Limonero-García J, Trelis-Navarro J, Serrano-Bermúdez G, and Gómez-Batiste X . The Institut Català d’Oncologia Model of Palliative Care: An integrated and comprehensive framework to address the essential needs of patients with advanced cancer . Journal of Palliative Care 29:4/ 2013;

236–242 .

Mount B, Kearney M . Healing and palliative care: charting ourway forward . J Palliat Med 2003; 17(8): 657-658 .

Murray SA, Kendall M, Boyd K, et al . Illness trajectories and palliative care . BMJ 2005; 330(7498): 1007-1011 .

Murray SA, Kendall M, Grant E, Boyd K, Barclay S, Sheikh A . Patterns of social, psychological and spiritual decline toward the end of life in lung cancer and heart failure . Journal of Pain & Symptom Management . JPSM 2007; 34(4):393-402 .

Murray SA, Boyd K, Sheikh A . Palliative care in chronic illness: we need to move from prognostic paralysis to active total care . BMJ 2005; 330:611-12 . Murray SA, Kendall M, Boyd K, Sheikh A . Illness trajectories and palliative care .

Clinical Review . BMJ 2005; 330:1007-11 .

Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H . Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their careers in the community . BMJ . 2002; 325: 929-932 .

National Consensus Project for Quality Palliative care: Clinical Practice Guide-lines for Quality Palliative Care . Third edition . 2013 . Available at: www . nationalconsensus project .org . Accessed 11 April 2016 .

Puchalski CM, Ferrell B, Virani R, et al . Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference . J Palliat Med 2009; 12(10): 885-904 .

The Hastings Center . The goals of medicine . Setting new priorities . Hastings Center Report 1996; 26(6): S 1-S27 .

Saunders C . Selected Writings 1958-2004 . 1st Edition by Saunders, Cicely (2006) . Saunders C . (ed .) . Beyond the Horizon: A Search for Meaning in Suffering

(17-Sep-1990) .

Saunders C . Watch with me: inspiration for a life in hospice care . Sheffield;

Mortal Press, 2003 .

Saunders C . M . Living with Dying: The Management of Terminal Disease (Oxford Medical Publications) by . (1989-05-18) .

Saunders C . Baines, M ., and Dunlop, R . Living with Dying: A Guide for Pallia-tive Care (Oxford Medical Publications) (1995) .

Saunders C . Watch with me: inspiration for a life in hospice care . Sheffield;

Mortal Press, 2003 .

Stedeford A . Facing death: patients, families and professionals . 2nd ed . Oxford:

Sobell House; 1994 .

Twycross R, Lack S . Therapeutics in terminal cancer . 2nd ed . London: Churchi-ll Livingstone; 1990 .

World Health Assembly Resolution WHA67 .10 . Strengthening of palliative care as a component of comprehensive care throughout the life course . Accessed 15 April 2016 at: http://apps .who .int/medicinedocs/en/d/Js21454en/

World Health Organization . Definition of Palliative Care . Accessed 15 April 2016 at: http://www .who .int/cancer/palliative/definition/en/

Yalom I . Existential psychotherapy . New York: Basic; 1980 .

Callahan D . Death and the research imperative . N Engl J Med 2000; 342(9):

654-656 .

Saunders C . Care of patients suffering from terminal illness at St Joseph’s Hos-pice, Hackney, London . Nursing Mirror 1964a; 14 Feb: vii-x .