Extending the boundaries: future challenges for palliative care Simon Woods (PhD) Policy Ethics and Life Sciences Research Centre

Outline Review the history of hospice and palliative care in the UK Summarise current criticism and challenges for end of life care Discuss the implications of these challenges for the Danish context

History of Palliative care UK Mainstream healthcare failing the dying Needed to take the patient out in order to allow values back in Hospice as a special place “a resting place for pilgrims” Cicely Saunders

Hospice to palliative care Combined compassion with scientific medicine Effective and evidence based symptom control Created a medical specialism (medicalization) Hospice a “philosophy of care” Palliative care and specialist palliative care “Upstreaming” – to an earlier point in the illness trajectory

Critical voices Bradshaw (1998) warned: Medicalization and managerialism that went hand in hand with mainstream health care. Care applied according to a formula would become “mere technique” devoid of values Contemporary healthcare systems are highly managerial, relying upon proof of efficacy by audit processes and outcome measures but these systems are not orientated to the things that really matter in end of life care.

But Hospices well established Multidisciplinary palliative care teams delivering specialist palliative care Dissemination of palliative care principles – but the challenge of expanding the Boundaries to e.g. hospital care

The problem in the UK The Liverpool Care for the Dying Patient (LCP) is an approach to care, designed to replicate within the hospital the standard of care for the dying found in many hospices. In part a response to the belief that care for the dying in the hospital sector was deficient.

Implications What is palliative care Palliative care values Respect for wishes at the end of life

“…In the right hands, the Liverpool Care Pathway can provide a model of good practice for the last days or hours of life for many patients. The ambition to transpose hospice-like standards of care into the hospital setting is admirable: before the widespread introduction of the LCP into hospitals, the care that patients received was variable and there were many examples of poor care. But it is clear that, in the wrong hands, the LCP has been used as an excuse for poor quality care.” (2014, p. 47)

Mainstream health-care has a problem acknowledging death as a natural outcome and cannot agree upon the effective care for the dying person. Medicine (health professionals) continue to fail to deal humanely with dying people. Care is at risk of becoming mere technique devoid of values. There is no consensus on the appropriateness of care across the illness trajectory.

Five priorities for the care of dying people The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly. Sensitive communication takes place between staff and the dying person, and those identified as important to them. The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants. The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible. An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.

Group Tasks In small discussion groups (not just your friends!) To what extent is medicalization a force in Danish palliative Care? What are the implications of “Standardisation” for PC/ EOLC What is the single most important challenge facing Danish Palliative Care?

Thank you for listening Tak for at lytte Simon Woods (PhD) simon.woods@ncl.ac.uk

References More Care Less Pathway: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf Leadership Alliance for the Care of Dying People – a coalition of organisations https://www.england.nhs.uk/ourwork/qual-clin-lead/lac/ Rapid Evidence Review: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212451/review_academic_literature_on_end_of_life.pdf Bradshaw, Ann (1996) The spiritual dimension of hospice: The secularization of an ideal. Social Science Medicine. 43(3):409-419. Hagger L.E., Woods S. (eds) (2013) A Good Death?: Law and Ethics in Practice. Ashgate Publishing Ltd, Farnham, Surrey. Woods S (2007) Death’s Dominion: ethics at the end of life. Facing Death Series: Editor David Clark. Open University Press.