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CARING WITHOUT CURING – IT’S OK TO DIE. Palliative Care Institute of Southeast Louisiana Hospice of St. Tammany. Objectives. Communicate better with patients and families about death and dying Come to grips with personal issues about death
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CARING WITHOUT CURING – IT’S OK TO DIE • Palliative Care Institute of Southeast Louisiana • Hospice of St. Tammany
Objectives • Communicate better with patients and families about death and dying • Come to grips with personal issues about death • Appreciate the value of the interdisciplinary team approach used in palliative care and hospice • Overcome the barriers to optimum opioid use at the end-of-life • Treat more effectively the distressing symptoms in the dying or suffering patient
The EPEC project, Education for Physicians on End-of-Life Care was developed by the American Medical Association and by the Northwestern University Medical School • We present now the trigger-tape from Plenary 1, “Gaps in End-of-life Care”
Ethical Principles Autonomy: respect for patient’s choice Beneficence: do good Non-maleficence: don’t harm Justice: fair use of resources
Part One - Concerns at the End-of-life Some needs expressed by patients:
“Talk to me and my family” • Communication is essential! • Keep the chain of communication simple • Remember cultural differences • 90+% of patients want to know if they have a life-threatening condition
“Talk to me and my family” • Breaking Bad News: • Set the stage • What does the patient and family know? • What do they want to know? • Give the news, pause, await the reaction • Establish a plan of action • Answer questions , pledge support
“Talk to me and my family” • Keeping the patient and family informed enhances a stronger doctor-patient relationship • Stay involved- be the patient’s advocate
“Respect My Wishes” • Advance directives simplify the lives of everyone (patients, families, healthcare professionals) • Planning ahead allows the patient to select a proxy to act for him/her • Listen and keep documentation of decisions
“Respect my wishes” • Every person has an idea of how they want to live and how they want to die • Remember that patients have the right to participate in planning their care, including the right to refuse or withdraw from treatment
“Don’t Abandon Me” • “There’s nothing more we can do” is often perceived by patients, rightly or wrongly, as abandonment • This is a time of great vulnerability • Knowing that someone they trust and rely on will be there for them, whether for aggressive or for palliative care is crucial
Non-abandonment Slowly, I learn about the importance of powerlessness. I experience it in my own life and I live with it in my work. “The secret is not to be afraid of it – not to run away. The dying know we are not God. “All they ask is that we do not desert them” Shelia Cassidy, MD
“Help Relieve My Suffering” • Much of suffering has to do with pain. Pain has 4 dimensions,and elements of each contribute to the complexity of the patient’s care • Physical pain • Emotional pain • Socio-economic pain • Spiritual pain
Components of Suffering • Physical symptoms. • Psychological symptoms • Complications of illness • Side effects of treatments • Effect of illness on life roles • Functional status
Components of Suffering • Context/meaning of illness • Past experience with illness • Relationship with doctors, nurses • Healthcare system • Financial stresses • Spiritual and existential concerns.
Spiritual Aspects of Suffering • Uncertainty about timing and manner of death. • Guilt and anger • Fatigue of caregiver and community support may lead to increased sense of isolation and abandonment. • Addressed by improved symptom control and reconnection with community.
“Help relieve my suffering” • In today’s world, it is unrealistic to expect the doctor to address all aspects of suffering • A team of healthcare professionals does the best job, much like the “stroke team” does • The patient’s doctor should be a member of that palliative care team
Summary- Part one • Personal physicians are the first to be called when illness strikes • Patients expect their doctor to be with them until the end • Though cure may not be possible, much can and should be done to provide comfort and support