The document discusses advance directives, including living wills and health care proxies, detailing their legal implications, components, and importance for patient decision-making regarding end-of-life care. It emphasizes the need for education on creating and honoring these directives among healthcare providers and patients alike, while also addressing common barriers to their implementation. Resources and references for further information and assistance in understanding advance directives are also provided.

1. Sandra Rae, NP Vanderbilt University School of Nursing N365 Summer 2010 Advance Directives When you know what you want, or at least what you don’t want.

2. Advance Directives Pre-Test 1. Living Wills are legally binding. T or F 2. Health Care Proxies are legally binding. T or F 3. A durable power of attorney for health care (DPOA-HC) is equivalent to a Health Care Proxy. T or F 4. Most patients who are admitted to ICUs have Advanced Directives. T or F 5. Only the elderly or terminally ill need Advance Directives. T or F 6. “I travel to Florida every winter. Will my Advance Directives be upheld there if I needed them”? Y or N

3. Learning Objectives Identify the various components of Advance Directives Understand their individual purpose and use Learn about barriers to the creation of Advance Directives Learning how we can educate our patients about Advance Directives Learning where to find resources

4. Advance Directives – What are they? Living Will – a written statement that outlines preferences for medical care, can also include preferences for hospice, social support and spiritual support if desired Healthcare Proxy – also known as a medical power of attorney, someone who would guide health care providers with regard to the patient’s choices Comfort Care/Do-not-resuscitate – an order, signed by a physician, NP or PA that states that the patient is making an informed refusal of care in the event of cardiac or respiratory failure “ Most chronically critically ill patients fail to designate a surrogate decision-maker or express preferences regarding life-sustaining treatments.” (Crit Care Med 2009; 37:919 –925)

5. Living Will Not legally binding in Massachusetts – health care providers are not obligated to abide by the preferences noted in a Living Will (however, of course, most try to) Contains preferences regarding medical treatments – intubation, ventilator use, artificial feeding methods, etc. Contains preferences regarding palliative care, social and spiritual support Gives the health care proxy a tool for making decisions Reminds everyone of what “quality of life” means to the patient, keeps the patient’s needs in the foreground

6. The Five Wishes First published in 1997 with a grant from the Robert Wood Johnson Foundation A Living Will written in easily accessible language Completion involves checking boxes and crossing out whatever is undesirable. Extra lines are given for writing in specific preferences. Includes Health Care Proxy paperwork legal for use in Massachusetts and 41 other states Includes consideration of spiritual and social support preferences Available in 26 languages, and Braille

7. Lifecare Directives More specific than “Five Wishes” Easy to use – checking what is desirable, adding information when needed Also contains the legally acceptable paperwork for Health Care Proxy Specific forms, tailored to the laws in each state and U.S. territory, are available for download Specialized forms for military, VA and federal inmates Lifecare offers several information packets regarding the many different types of Advance Directives and guidance as to which is most appropriate for a given individual’s needs

8. Health Care Proxy A Health Care Proxy is a document for naming a person to make decisions on the patient’s behalf in the event that the patient is unable to do so The person named to act on the patient’s behalf is the ‘Agent’. The patient is referred to as the ‘Principal’. Health care providers in Massachusetts must honor the decisions made by the patient’s Agent and thus the Agent can support the preferences made in the Living Will The Proxy document should indicate any limitations that should be placed on the decision-making reach of the Agent and specifically state when the Agent is to begin making decisions – at the point at which the patient is unconscious, cognitively impaired, terminally ill

9. Health Care Proxy Essential Components The Agent must be named, with directions for authority and limitations. The Agent cannot be someone employed at the health care facility unless directly a blood relative If the Agent named is a spouse, and if divorce or legal separation occurs, the entire Proxy is no longer valid An Alternate should be chosen as well, with contact information for both The Proxy must be signed with two (2) witnesses, who are over 18, cognitively competent to do so, and under no duress The witnesses cannot be the Agent or the Alternate

10. Comfort Care/Do-Not-Resuscitate Order The CC/DNR is a non-hospital order to prevent CPR resuscitation, intubation and defibrillation in the event of a cardiac or respiratory failure CC/DNR is an all-or-nothing protocol in the field. EMS must either resuscitate fully or abide by the DNR and not resuscitate. “ Do not resuscitate” does not mean “Do not treat” Is not applicable to other types of trauma – choking, motor vehicle accidents where injury but not death is the issue, burns, heat exhaustion etc. Must have an original CC/DNR Verification available to EMTs should they be called to prevent resuscitation attempts – the Health Care Agent, family members or friends are not enough to prevent resuscitation Must be signed by physician, NP or PA A copy of the form must accompany the patient to the hospital

11. An Important Point to Remember: Patient Education When discussing the CC/DNR option (and all Advance Directives) with patients it is important to discuss where these documents and bracelets should be kept. They should not be locked away. They need to be where anyone can find them. “ The answer here is not a gadget. The answer – as is the case in every EMS issue – is education… If it [the CC/DNR Verification form] is not immediately available for medical personnel, it might as well not exist.” AJ Hidell from an online discussion on www.EMTlife.com

12. Additional Components of the Advance Directive Package Durable Power of Attorney – The durable power of attorney names an Agent to act on behalf of the Principal to make bank transactions, sign Social Security checks, apply for disability, or access the Principal’s finances to pay the bills while an individual is medically incapacitated. Organ Donation – Registration is through the RMV when applying for a MA driver’s license or through Donate Life New England at www.donatelifenewengland.org . It is important to let family and friends know whether or not registration has taken place. FAQs at http://www.mass.gov/rmv/license/organ_donorFAQs.htm .

13. Bringing the Discussion to the Patient Health care providers have the opportunity to bring the topic of Advance Directives to the community through patient education. We need to identify barriers to completing Advance Directives and help to overcome them. Most of the content of Advance Directives are relevant for everyone – accidents happen. In the same way that we plan for the unexpected, e.g. smoke detectors, health insurance, airbags in the cars, we can plan for unexpected health care needs in the event of personal incapacity.

14. Barriers to Completing Advance Directives Patient and provider reluctance Time constraints Assumptions Denial and procrastination Unrealistic expectations Delaying until a crisis Discomfort with palliative care planning Lack of documentation Cultural and health system barriers Readiness Unrealistic expectations of the success of resuscitation efforts Access to information Complexity of making decisions Inability to identify a proxy Lack of trust in advance directives Patients’ refusal to discuss the issue because they are overwhelmed when initially diagnosed with a chronic/terminal illness. Robinson, Ruthie, Eagen, Mary K., Price, Tammy J. (2008)

15. Starting the Process Much of the process of writing a Living Will or choosing an Agent for a Health Care Proxy involves conversation. Conversations with family and friends should allow for time to consider options before putting it all on paper. It all starts with acceptance. “The death rate now, as in antiquity, remains one per life…” Henry Schneiderman, MD

16. Questions to ponder along the way How do we, the health care team, honor your wishes for end-of-life care? How would you envision a “good death”? “ Support is a proud part of medicine. Our presence, our words, and our avoidance of futile frenzy are great blessings for patient and family.” Henry Schneiderman, MD

17. Now that the hard part is done… … will our Advance Directives be understood and honored? One study noted that there is ample confusion among health care providers regarding Advance Directives: A survey of health care providers indicated that most respondents equated a Living Will with a DNR, as having the same meaning. Mirarchi, et al (2008) Review of the research regarding the use of Advance Directives suggests that 1. The presence of a comfort care plan increases the likelihood that a patient will receive morphine for pain relief. 2. In one study, the presence of a Living Will was significantly related to whether a DNR order was written. Two patients in the study received CPR at the end of their lives despite the presence of a DNR. 3. Also noted in that study: “ No relationship was found between the presence of formal advance directives and the use of life-sustaining treatments.” Dobbins, Elizabeth H. (2007) 4. According to the Agency for Healthcare Research and Quality, even among the terminally ill, less than half had directives. (2009, reported by RWJF). Advance Directives can’t help if they don’t exist.

18. We need to educate each other Several research studies noted that there is significant misunderstanding among all health care providers with regard to the terms “Advance Directive” and “Living Will” In these studies it was clear that a DNR order was not a guarantee that resuscitation attempts would not be made Research has shown that having Advance Directives does not always have the intended effect. Health care teams need to be educated regarding Advance Directives so that the patient receives the appropriate level of care.

19. Agents of Change As health care providers we can educate our patients about the use of Advance Directives We can identify the barriers to creating Advance Directives and help to modify those barriers with communication We can only teach what we know – increasing our own knowledge about these documents increases the likelihood that we can successfully teach others We must also educate each other. We can identify knowledge deficits in our medical offices and help to clarify misunderstandings

20. Links for more information 5 Wishes www.agingwithdignity.org/forms/5wishes.pdf “ Ten things you should know about health care proxies and living wills” www.malawforum.com/node/310 Definitions and forms for Advance Directives http://www.massmed.org/AM/Template.cfm?Section=Public_Health_Resources&CONTENTID=7580&TEMPLATE=/CM/HTMLDisplay.cfm Information regarding Advance Directives and Hospice Care http://www.hospicefed.org/hospice_pages/directives.htm End-of-life planning, Bill Moyer http://www.pbs.org/wnet/onourownterms/ Caring Connections, planning for end-of-life care http://www.rwjf.org/healthpolicy/product.jsp?id=50150

21. References Massachusetts Health and Human Services. http://www.mass.gov/?pageID=eohhs2terminal&L=5&L0=Home&L1=Provider&L2=Guidelines+and+Resources&L3=Guidelines+for+Clinical+Treatment&L4=Comfort+Care++Do+Not+Resuscitate+%28DNR%29+Order+Verification+Program&sid=Eeohhs2&b=terminalcontent&f=dph_emergency_services_p_comfort_care_faqs&csid=Eeohhs2 accessed July 1, 2010. Camhi, Sharon L., Mercado, Alice F., Morrison, R. Sean, Du, Qingling, Platt, David M., August, Gary I., Nelson, Judith E. (2009) Deciding in the dark: Advance directives and continuation of treatment in chronic critical illness. Crit Care Med 2009 Vol. 37, No. 3. Aging With Dignity, Five Wishes www.agingwithdignity.org/forms/5wishes.pdf accessed June 30, 2010. The Forum for Massachusetts Law, Ten things you should know about health care proxies and living wills www.malawforum.com/node/310 accessed July 1, 2010. Massachusetts Bar Association, Living Wills and Health Care Proxies, printed 2005. Massachusetts Commission on End of Life Care website. http://www.endoflifecommission.org/end_pages/advance_care.htm accessed July 1, 2010.

22. More References Robinson, Ruthie, Eagen, Mary K., Price, Tammy J. (2008) Innovative Solutions: Taking Advance Directives to the Community. Dimensions of Critical Care Nursing Vol 27/ No.4. Schneiderman, H. (2010) Wearing-out, the end of life, and what our work entails then. Consultant. 2010;50:210-216. Quill, Timothy E. (2005) Terri Schiavo – A Tragedy Compounded. The New England Journal of Medicine. Volume 352:1630-1633. Accessed on July 2, 2010 at http://content.nejm.org/cgi/content/full/352/16/1630 Dobbins, Elizabeth H. (2007) End of Life Decisions: Influence of Advance Directives on Patient Care. Journal of Gerontological Nursing , October 2007, pp50-56. Mirarchi, Ferdinando L., Hite, Lesley A., Cooney, Timothy E., Kisiel, Theresa M., Henry, Patty (2008) TRIAD I-The Realistic Interpretation of Advanced Directives. Journal of Patient Safety. 4(4):235-240, December 2008. Robert Wood Johnson Foundation, http://www.rwjf.org/healthpolicy/product.jsp?id=50150 accessed July 5, 2010. Florida Health Finder http://www.floridahealthfinder.gov/reports-guides/advance-directives.shtml accessed July 9 , 2010.