1. Palliative Care and End of Life Issues Denise Spencer, MD Palliative Care Center of the Bluegrass January 10, 2007

2. Objectives Introduce the vocabulary needed to have an end-of-life (EOL) conversation Discuss dying as a diagnosis Introduce common physician attitudes toward the terminal/dying patient and family Discuss basic conversational techniques helpful when having a patient/family conference

3. Objectives Introduce the vocabulary needed to have an end-of-life (EOL) conversation Discuss dying as a diagnosis Introduce common physician attitudes toward the terminal/dying patient and family Discuss basic conversational techniques helpful when having a patient/family conference

4. Advanced Directive A general term that describes two kinds of legal documents – living wills and medical power of attorney Enables patients to give instructions on future medical care should they not be able to participate in their own decisions

5. Living Will A type of advanced directive in which patients document their preferences for medical treatment/aggressiveness if they are at the end of life and unable to participate in medical decisions Translation – How aggressive does the patient want to be to delay death?

6. Medical Power-of-Attorney AKA Healthcare Surrogate Makes decisions based on the patient’s values and what they would want in any given situation A legal power of attorney usually does not cover healthcare decisions; generally covers financial decisions only…but read the fine print

7. What if there is no HCS named? Order of Decision-Makers (KRS 311.637) – Court appointed guardian – Durable Power of Attorney with healthcare surrogate privileges specified or Attorney-in-Fact – Spouse – Consensus of adult children who are “reasonably available” – Parents – Consensus of nearest living relatives of the same relation

8. Do Not Resuscitate (DNR) A physician’s order in the chart that states that ACLS protocol (shocks, chest compressions, meds) nor mechanical ventilation will be performed in the event of cardiac or respiratory arrest What will happen? – Death will occur naturally – Patient will be kept comfortable

9. Palliative Medicine The subspecialty of Internal Medicine that addresses aggressive symptom management and goals of care in patients with life-limiting illness Coincides with aggressive, curative medical care

10. Palliative Care Team approach to Palliative Medicine that addresses physical, emotional and spiritual suffering; includes physician, nurse, social worker and chaplain

12. Hospice As defined by Medicare – patient has a prognosis of 6 months or less – Services are not terminated if the patient lives longer than six months As a philosophy – team approach to care that addresses the spiritual, emotional and physical suffering of the dying patient and their family, as defined by the patient

13. Objectives Introduce the vocabulary needed to have an end-of-life (EOL) conversation Discuss dying as a diagnosis Introduce common physician attitudes toward the terminal/dying patient and family Discuss basic conversational techniques helpful when having a patient/family conference

14. Diagnosing Dying Physicians usually describe prognosis in terms of – Hours to days – Days to weeks – Weeks to months

15. Hours to days – that’s “easy” Every possible life-sustaining intervention has been exhausted and the patient continues to decline Symptoms increase Mental status decreases Not eating, decreased urine output, etc.

16. Weeks to months – that’s tougher Doctor’s tend to over estimate life expectancy – Unsure of their prediction – Unsure how the patient will respond to the news Patients tend to have expectations beyond their doctor’s over estimation No great data available for guidance

17. General Predictors of Survival Patients’ performance status – Ambulation, ADLs, oral intake, etc Patients’ clinical signs and symptoms – Symptoms at diagnosis, new symptoms Physicians’ clinical predictions – SUPPORT trial Recurrent hospital admissions

18. Why is prediction important? Patient/family perspective – Planning for future – Unfinished business – Time to explore/validate the diagnosis – Provides a greater sense of control – Generally helps with the death story and therefore the grieving process – Increased availability to hospice services

19. Why is prediction important? Clinical/societal perspective – Promotes the doctor/patient relationship – Patients who have a realistic idea of their prognosis are less likely to request therapy that most physicians consider futile Physician’s personal practice Ethical issues Resource justice issues

20. Objectives Introduce the vocabulary needed to have an end-of- life (EOL) conversation Discuss dying as a diagnosis Introduce common physician attitudes toward the terminal/dying patient and their family Discuss basic conversational techniques helpful when having a patient/family conference

21. Physician Attitudes The Bomb Dropper – “You’ve got X time to live; get your affairs in order.” “Don’t Ask, Don’t Tell” – Supportive but doesn’t provide the full picture – “If they wanted to know how sick they were they would ask me.” – “If I was that sick my doctor would tell me.” “Kinder, Gentler” Approach

22. Objectives Introduce the vocabulary needed to have an end-of-life (EOL) conversation Discuss dying as a diagnosis Introduce common physician attitudes toward the terminal/dying patient and family Discuss basic conversational techniques helpful when having a patient/family conference

23. The Patient/Family Conference Gather the family in private if possible Make sure the decision-makers are present Make introductions Develop a format – What questions do you have? – What is your understanding of the situation? – This is the time to define the patient’s goals if not already known Keep it simple and make a PLAN

25. Breaking the news……with questions What is your understanding of your illness? How sick do you think you are? Are you getting better over time? What questions can I answer for you? Would you like to know what I think about your state of health? When can we talk about that?

26. Patient Scenarios Previously healthy patient now with a serious diagnosis Patient with a serious diagnosis now at the end of curative options Dying patient with a need to address the family/HCS Elderly patient with multiple medical problems admitted for acute care

27. Questions………… …..about this discussion? …..about Palliative Medicine? …..about hospice? …..about Dr. Rudy? dspencer@hospicebg.org