3. EPECEPECEPECEPEC EPECEPECEPECEPEC Elements and Models of End-of-life Care Elements and Models of End-of-life Care Plenary 3 The Project to Educate Physicians on End-of-life Care Supported by the American Medical Association and the Robert Wood Johnson Foundation

4. Objectives l Describe conceptions of suffering l Describe elements of end-of-life care l Define palliative care l Describe hospice, palliative care program standards l Describe conceptions of suffering l Describe elements of end-of-life care l Define palliative care l Describe hospice, palliative care program standards

5. Conceptions of suffering l Fragmentation of personhood – Cassell l Broken stories – Brody l Challenge to meaning – Byock l Total pain – Saunders l Fragmentation of personhood – Cassell l Broken stories – Brody l Challenge to meaning – Byock l Total pain – Saunders

6. The broad perspective l A narrow focus will miss the target depression affects experience of pain medication useless if can’t get it spiritual strength may enhance tolerance feeling abandoned may be expressed as physical suffering l A narrow focus will miss the target depression affects experience of pain medication useless if can’t get it spiritual strength may enhance tolerance feeling abandoned may be expressed as physical suffering

7. Elements of end-of-life experience l Fixed characteristics of the patient l Modifiable dimensions of the patient’s experience l Care-system interventions l Outcomes – overall experience of the dying process l Fixed characteristics of the patient l Modifiable dimensions of the patient’s experience l Care-system interventions l Outcomes – overall experience of the dying process

8. Fixed characteristics of the patient Fixed characteristics of the patient Religion Race, ethnicity and culture Diagnosis, prognosis Socioeconomic class

9. Modifiable dimensions Psychological, cognitive symptoms Physical symptoms Caregiving needs Hopes, expectations Economic demands Social relationships, support Patient Spiritual, cultural, existential beliefs

10. Health system interventions Family / friends Community Health professionals Institutions Patient

11. Outcomes Quality of life Utilization Satisfaction Pain / symptom relief Patient

12. Hospice in the US l A place l An organization or program l An approach to or philosophy of care l A system of reimbursement l A place l An organization or program l An approach to or philosophy of care l A system of reimbursement

13. Palliative care l Relieving suffering l Improving quality of life l Relieving suffering l Improving quality of life

14. Palliative care – definition 1 “Palliative care seeks to prevent, relieve, reduce or soothe the symptoms of disease or disorder without effecting a cure… Palliative care in this broad sense is not restricted to those who are dying or those enrolled in hospice programs… It attends closely to the emotional, spiritual, and practical needs and goals of patients and those close to them.” Institute of Medicine 1998 “Palliative care seeks to prevent, relieve, reduce or soothe the symptoms of disease or disorder without effecting a cure… Palliative care in this broad sense is not restricted to those who are dying or those enrolled in hospice programs… It attends closely to the emotional, spiritual, and practical needs and goals of patients and those close to them.” Institute of Medicine 1998

15. Palliative care – definition 2 “The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with anti- cancer treatment.” WHO 1990 “The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with anti- cancer treatment.” WHO 1990

16. Palliative care – expanded definition l Affirms life, regards dying as a normal process l Neither hastens nor postpones death l Provides relief from pain, other symptoms l Integrates psychological and spiritual care l Interdisciplinary team l Support system for the family WHO 1990 l Affirms life, regards dying as a normal process l Neither hastens nor postpones death l Provides relief from pain, other symptoms l Integrates psychological and spiritual care l Interdisciplinary team l Support system for the family WHO 1990

17. Hospice Palliative care Curative / remissive therapy Presentation Death

18. Standards for hospice and palliative care... l Access to care, delivery of care l Informed choices l Symptom management l Psychological, social and spiritual support l Access to care, delivery of care l Informed choices l Symptom management l Psychological, social and spiritual support

19. .. Standards for hospice and palliative care l Grief, bereavement support l Continuity between care settings l Evaluation, research, education l Grief, bereavement support l Continuity between care settings l Evaluation, research, education

20. EPECEPECEPECEPEC EPECEPECEPECEPEC Elements and Models of End- of-life Care Summary Summary