2. EPECEPECEPECEPEC EPECEPECEPECEPEC Facilitating Advance Care Planning Christopher W Pile, MD Section Chief – Palliative Medicine Carilion Clinic Facilitating Advance Care Planning Christopher W Pile, MD Section Chief – Palliative Medicine Carilion Clinic The Project to Educate Physicians on End-of-life Care Supported by the American Medical Association and the Robert Wood Johnson Foundation

3. Objectives l Understand concepts of advance directives and advance care planning l Review literature for advance directives and advance care planning l Develop new approaches to facilitate effective advance care planning l Learn interventions to ensure advance care planning impacts care l Understand concepts of advance directives and advance care planning l Review literature for advance directives and advance care planning l Develop new approaches to facilitate effective advance care planning l Learn interventions to ensure advance care planning impacts care

4. Advance Directives l Definition: A plan by a capable person about future medical care in the event person is diagnosed with a terminal condition or persistent vegetative state and person is unable to communicate choices. This plan can be expressed orally or in writing. This plan can be expressed orally or in writing. l Definition: A plan by a capable person about future medical care in the event person is diagnosed with a terminal condition or persistent vegetative state and person is unable to communicate choices. This plan can be expressed orally or in writing. This plan can be expressed orally or in writing.

5. Current US approach l Providing information about legal rights to refuse treatment and complete statutory documents l Asking patients if they have advance directives upon admission l Encouraging completion of documents with no instruction l Asking simplistic questions: “If you heart stops, should we do CPR?” l Providing information about legal rights to refuse treatment and complete statutory documents l Asking patients if they have advance directives upon admission l Encouraging completion of documents with no instruction l Asking simplistic questions: “If you heart stops, should we do CPR?”

6. Limitations l Barriers to complete l Hypothetical decisions about uncertain future l Medical advances l Emotionally difficult time at implementation l Not followed by physicians l Barriers to complete l Hypothetical decisions about uncertain future l Medical advances l Emotionally difficult time at implementation l Not followed by physicians

7. How have they worked? l The prevalence is low (20-30% in general pop. and < 50% for advanced illness) l Often unavailable at place of treatment (25% available to treating physician) l Wording too generic l Does not impact care (not available, not specific, not accepted) Wilkinson A, Wenger N, Shugarman LR. Literature Review on Advance Directives, 2007. l The prevalence is low (20-30% in general pop. and < 50% for advanced illness) l Often unavailable at place of treatment (25% available to treating physician) l Wording too generic l Does not impact care (not available, not specific, not accepted) Wilkinson A, Wenger N, Shugarman LR. Literature Review on Advance Directives, 2007.

8. Advance Care Planning l Definition A process of planning for future medical decisions. This process needs to meet similar standards as informed consent. Must understand potential situations, choices, and outcomes. Reason and reflect. Discuss choices with those who will implement plan. Update regularly. l Definition A process of planning for future medical decisions. This process needs to meet similar standards as informed consent. Must understand potential situations, choices, and outcomes. Reason and reflect. Discuss choices with those who will implement plan. Update regularly.

9. Relationship of ACP to AD l Advance Directives only as good as Advance Care Planning process l If patient does not understand, reflect, and discuss choices low probability it will impact care l The form must represent a quality planning process l Advance Directives only as good as Advance Care Planning process l If patient does not understand, reflect, and discuss choices low probability it will impact care l The form must represent a quality planning process

10. Successful ACP l Plans must be created l Plans must be specific enough for the clinical situation l Plans must be an accurate reflection of the patient’s preferences, values, and goals l Plans must be available l Plans must be incorporated Adapted Fagerlin A, Schneider CE. Enough. The Failure of the Living Will. Hastings Center Report 34 no. 2 (2004): 30-42 l Plans must be created l Plans must be specific enough for the clinical situation l Plans must be an accurate reflection of the patient’s preferences, values, and goals l Plans must be available l Plans must be incorporated Adapted Fagerlin A, Schneider CE. Enough. The Failure of the Living Will. Hastings Center Report 34 no. 2 (2004): 30-42

11. ACP Stages l Attempting to plan for ALL possibilities in a single document is impossible and unnecessary l 3 stages 1) Basic planning for all healthy adults 2) Chronic disease where complications are predictable 3) End stage disease where it would not be surprising if the patient died in the next 12 months l Attempting to plan for ALL possibilities in a single document is impossible and unnecessary l 3 stages 1) Basic planning for all healthy adults 2) Chronic disease where complications are predictable 3) End stage disease where it would not be surprising if the patient died in the next 12 months

12. Evidence Based Outcomes l l End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment. Wright et al, Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Care Giver Bereavement Adjustment. JAMA 2008:300(14) 1665-1673 l l End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment. Wright et al, Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Care Giver Bereavement Adjustment. JAMA 2008:300(14) 1665-1673

13. Evidence Based Outcomes l l Patients with cancer who die in a hospital or ICU have worse QoL compared with those who die at home, and their bereaved caregivers are at increased risk for developing psychiatric illness. Wright et al, Place of Death: Correlations With Quality of Life of Patients with Cancer and Predictors of Bereaved Caregivers’ Mental Health. JCO 2010 (28) 4457-4464. l l Patients with cancer who die in a hospital or ICU have worse QoL compared with those who die at home, and their bereaved caregivers are at increased risk for developing psychiatric illness. Wright et al, Place of Death: Correlations With Quality of Life of Patients with Cancer and Predictors of Bereaved Caregivers’ Mental Health. JCO 2010 (28) 4457-4464.

14. Evidence Based Outcomes l l Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience. Teno et al, Family Perspectives on End-of-Life Care at the Last Place of Care. JAMA 2004: 291(1):88-93 l l Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience. Teno et al, Family Perspectives on End-of-Life Care at the Last Place of Care. JAMA 2004: 291(1):88-93

15. Barriers to Successful ACP l Emotionally Laden Discussion l Time Consuming l Care Setting Transitions l Medical Advances l Emotionally Laden Discussion l Time Consuming l Care Setting Transitions l Medical Advances

16. Moral Imperative “I didn’t expect him to die so soon. I got the feeling the doctors weren’t entirely honest with us about his condition. My husband resisted talking about dying and after 40 years of marriage I feel he let me down by not opening up and I guess I let him down for not knowing how to talk about some of the things that I needed to discuss. It would have been nice closure if things had been different in the end. I can never get that time back.” Heyland et al, Open Med. 2009 Jun 16;3(2):e101-10. “I didn’t expect him to die so soon. I got the feeling the doctors weren’t entirely honest with us about his condition. My husband resisted talking about dying and after 40 years of marriage I feel he let me down by not opening up and I guess I let him down for not knowing how to talk about some of the things that I needed to discuss. It would have been nice closure if things had been different in the end. I can never get that time back.” Heyland et al, Open Med. 2009 Jun 16;3(2):e101-10.

17. ACP System l Communication Training l Goals of Care Discussion l Advance Directive Documents POLST Paradigm www.ohsu.edu/polst l Medical Advocates l Community Collaboration l Communication Training l Goals of Care Discussion l Advance Directive Documents POLST Paradigm www.ohsu.edu/polst l Medical Advocates l Community Collaboration

18. 7-step protocol to negotiate goals of care 1. Create the right setting 2. Determine what the patient and family know 3. Ask what they want to know 4. Explore expectations and hopes keeping in mind realistic goals 5. Respond empathically 6. Make a plan including follow-up Caring Connections www.caringinfo.org 7. Review and revise periodically 1. Create the right setting 2. Determine what the patient and family know 3. Ask what they want to know 4. Explore expectations and hopes keeping in mind realistic goals 5. Respond empathically 6. Make a plan including follow-up Caring Connections www.caringinfo.org 7. Review and revise periodically

19. Truth and Hope l “Don’t take away the patient’s hope.” l Research consistently shows >90% of patients want to know the reality of their medical condition l Suffering can not be completely avoided l False Hope l Hospice/Palliative Care can provide quantity as well as quality of life Pyenson et al, Medicare Costs in Matched Hospice and Non- Hospice Cohorts, JPSM 28(3) 200-210. Temel et al, Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer, NEJM 363(8) 733-742. l Redefined Hope = Transcendence l “Don’t take away the patient’s hope.” l Research consistently shows >90% of patients want to know the reality of their medical condition l Suffering can not be completely avoided l False Hope l Hospice/Palliative Care can provide quantity as well as quality of life Pyenson et al, Medicare Costs in Matched Hospice and Non- Hospice Cohorts, JPSM 28(3) 200-210. Temel et al, Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer, NEJM 363(8) 733-742. l Redefined Hope = Transcendence

20. Language with unintended consequences l There is nothing more we can do. l Do you want us to do everything possible? l Will you agree to discontinue care? l It’s time we talk about pulling back. l I think we should stop aggressive therapy. l There is nothing more we can do. l Do you want us to do everything possible? l Will you agree to discontinue care? l It’s time we talk about pulling back. l I think we should stop aggressive therapy.

21. Language to describe the goals of care... l I want to give the best care possible until the day you die l We want to help you live meaningfully in the time that you have l I’ll do everything I can to help you maintain your independence l I want to ensure that your father receives the kind of treatment he wants l I want to give the best care possible until the day you die l We want to help you live meaningfully in the time that you have l I’ll do everything I can to help you maintain your independence l I want to ensure that your father receives the kind of treatment he wants

22. ... Language to describe the goals of care l I will focus my efforts on treating your symptoms l Let’s discuss what we can do to fulfill your wish to stay at home l We will continue to care for you and help you meet your goals l I will focus my efforts on treating your symptoms l Let’s discuss what we can do to fulfill your wish to stay at home l We will continue to care for you and help you meet your goals

23. Implementing AD l Choose medical POA wisely l It is about the relationship not the document l Open ongoing communication l Expect increased emotions l Find medical advocate PhysicianHospice Palliative Care Ethics Committees l Choose medical POA wisely l It is about the relationship not the document l Open ongoing communication l Expect increased emotions l Find medical advocate PhysicianHospice Palliative Care Ethics Committees

24. Conclusion l Current approach to AD’s have failed l Providers not trained to facilitate ACP or implement AD in medical decision making l Examples of successful community developed ACP systems exist l Our patients and families are counting on us l In your world, if you don’t change things, who will? l Current approach to AD’s have failed l Providers not trained to facilitate ACP or implement AD in medical decision making l Examples of successful community developed ACP systems exist l Our patients and families are counting on us l In your world, if you don’t change things, who will?

25. EPECEPECEPECEPEC EPECEPECEPECEPEC Advance Care Planning Questionscwpile@carilionclinic.org Questionscwpile@carilionclinic.org