Sandra Rae, NPSandra Rae, NPVanderbilt University School of NursingVanderbilt University School of NursingN365 Summer 2010 N365 Summer 2010

Advance DirectivesAdvance Directives

When you know what you want,When you know what you want,or at least what you don’t want.or at least what you don’t want.

Advance Directives Pre-TestAdvance Directives Pre-Test

• 1. Living Wills are legally binding. T or F1. Living Wills are legally binding. T or F

• 2. Health Care Proxies are legally binding. T or F2. Health Care Proxies are legally binding. T or F

• 3. A durable power of attorney for health care (DPOA-HC) is equivalent to a 3. A durable power of attorney for health care (DPOA-HC) is equivalent to a Health Care Proxy. T or FHealth Care Proxy. T or F

• 4. Most patients who are admitted to ICUs have Advanced Directives. T or F4. 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 F5. 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 6. “I travel to Florida every winter. Will my Advance Directives be upheld there if I needed them”? Y or Nthere if I needed them”? Y or N

Learning ObjectivesLearning Objectives

• Identify the various components of Advance DirectivesIdentify the various components of Advance Directives

• Understand their individual purpose and useUnderstand their individual purpose and use

• Learn about barriers to the creation of Advance Learn about barriers to the creation of Advance DirectivesDirectives

• Learning how we can educate our patients about Learning how we can educate our patients about Advance DirectivesAdvance Directives

• Learning where to find resourcesLearning where to find resources

Advance Directives – What are they?Advance Directives – What are they?

• Living WillLiving Will – a written statement that outlines preferences for medical – a written statement that outlines preferences for medical care, can also include preferences for hospice, social support and spiritual care, can also include preferences for hospice, social support and spiritual support if desiredsupport if desired

• Healthcare ProxyHealthcare Proxy – also known as a medical power of attorney, someone – also known as a medical power of attorney, someone who would guide health care providers with regard to the patient’s choiceswho would guide health care providers with regard to the patient’s choices

• Comfort Care/Do-not-resuscitateComfort Care/Do-not-resuscitate – an order, signed by a physician, NP – an order, signed by a physician, NP or PA that states that the patient is making an informed refusal of care in or PA that states that the patient is making an informed refusal of care in the event of cardiac or respiratory failurethe 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)

Living WillLiving Will

• Not legally binding in Massachusetts – health care providers are not Not legally binding in Massachusetts – health care providers are not obligated to abide by the preferences noted in a Living Will (however, of obligated to abide by the preferences noted in a Living Will (however, of course, most try to)course, most try to)

• Contains preferences regarding medical treatments – intubation, ventilator Contains preferences regarding medical treatments – intubation, ventilator use, artificial feeding methods, etc.use, artificial feeding methods, etc.

• Contains preferences regarding palliative care, social and spiritual supportContains preferences regarding palliative care, social and spiritual support

• Gives the health care proxy a tool for making decisionsGives the health care proxy a tool for making decisions

• Reminds everyone of what “quality of life” means to the patient, keeps the Reminds everyone of what “quality of life” means to the patient, keeps the patient’s needs in the foregroundpatient’s needs in the foreground

The Five WishesThe Five Wishes

• First published in 1997 with a grant from the Robert Wood Johnson First published in 1997 with a grant from the Robert Wood Johnson FoundationFoundation

• A Living Will written in easily accessible languageA Living Will written in easily accessible language

• Completion involves checking boxes and crossing out whatever is Completion involves checking boxes and crossing out whatever is undesirable. Extra lines are given for writing in specific preferences.undesirable. Extra lines are given for writing in specific preferences.

• Includes Health Care Proxy paperwork legal for use in Massachusetts and Includes Health Care Proxy paperwork legal for use in Massachusetts and 41 other states41 other states

• Includes consideration of spiritual and social support preferencesIncludes consideration of spiritual and social support preferences

• Available in 26 languages, and BrailleAvailable in 26 languages, and Braille

Lifecare DirectivesLifecare Directives

• More specific than “Five Wishes”More specific than “Five Wishes”

• Easy to use – checking what is desirable, adding information when neededEasy to use – checking what is desirable, adding information when needed

• Also contains the legally acceptable paperwork for Health Care ProxyAlso contains the legally acceptable paperwork for Health Care Proxy

• Specific forms, tailored to the laws in each state and U.S. territory, are Specific forms, tailored to the laws in each state and U.S. territory, are available for downloadavailable for download

• Specialized forms for military, VA and federal inmatesSpecialized forms for military, VA and federal inmates

• Lifecare offers several information packets regarding the many different Lifecare offers several information packets regarding the many different types of Advance Directives and guidance as to which is most appropriate types of Advance Directives and guidance as to which is most appropriate for a given individual’s needsfor a given individual’s needs

Health Care ProxyHealth Care Proxy

• A Health Care Proxy is a document for naming a person to make decisions 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 soon 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 The person named to act on the patient’s behalf is the ‘Agent’. The patient is referred to as the ‘Principal’.is referred to as the ‘Principal’.

• Health care providers in Massachusetts must honor the decisions made by Health care providers in Massachusetts must honor the decisions made by the patient’s Agent and thus the Agent can support the preferences made the patient’s Agent and thus the Agent can support the preferences made in the Living Willin the Living Will

• The Proxy document should indicate any limitations that should be placed The Proxy document should indicate any limitations that should be placed on the decision-making reach of the Agent and specifically state when the 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 Agent is to begin making decisions – at the point at which the patient is unconscious, cognitively impaired, terminally illunconscious, cognitively impaired, terminally ill

Health Care ProxyHealth Care ProxyEssential ComponentsEssential Components

• The Agent must be named, with directions for authority and limitations. The The Agent must be named, with directions for authority and limitations. The Agent cannot be someone employed at the health care facility unless Agent cannot be someone employed at the health care facility unless directly a blood relativedirectly a blood relative

• If the Agent named is a spouse, and if divorce or legal separation occurs, If the Agent named is a spouse, and if divorce or legal separation occurs, the entire Proxy is no longer validthe entire Proxy is no longer valid

• An Alternate should be chosen as well, with contact information for bothAn Alternate should be chosen as well, with contact information for both

• The Proxy must be signed with two (2) witnesses, who are over 18, The Proxy must be signed with two (2) witnesses, who are over 18, cognitively competent to do so, and under no duresscognitively competent to do so, and under no duress

• The witnesses cannot be the Agent or the AlternateThe witnesses cannot be the Agent or the Alternate

Comfort Care/Do-Not-Resuscitate OrderComfort Care/Do-Not-Resuscitate Order

• The CC/DNR is a non-hospital order to prevent CPR resuscitation, intubation and defibrillation in The CC/DNR is a non-hospital order to prevent CPR resuscitation, intubation and defibrillation in the event of a cardiac or respiratory failurethe 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 CC/DNR is an all-or-nothing protocol in the field. EMS must either resuscitate fully or abide by the DNR and not resuscitate.DNR and not resuscitate.

• ““Do not resuscitate” does not mean “Do not treat”Do not resuscitate” does not mean “Do not treat”

• Is not applicable to other types of trauma – choking, motor vehicle accidents where injury but Is not applicable to other types of trauma – choking, motor vehicle accidents where injury but not death is the issue, burns, heat exhaustion etc.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 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 resuscitation attempts – the Health Care Agent, family members or friends are not enough to prevent resuscitationprevent resuscitation

• Must be signed by physician, NP or PAMust be signed by physician, NP or PA

• A copy of the form must accompany the patient to the hospitalA copy of the form must accompany the patient to the hospital

An Important Point to Remember: An Important Point to Remember: Patient EducationPatient Education• When discussing the CC/DNR option (and all Advance Directives) When discussing the CC/DNR option (and all Advance Directives)

with patients it is important to discuss where these documents and with patients it is important to discuss where these documents and bracelets should be kept. They should not be locked away. They bracelets should be kept. They should not be locked away. They need to be where anyone can find them.need to be where anyone can find them.

• ““The answer here is not a gadget. The answer – as is the case in 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 every EMS issue – is education… If it [the CC/DNR Verification form] is not immediately available for medical personnel, it might as form] is not immediately available for medical personnel, it might as well not exist.” AJ Hidell from an online discussion on well not exist.” AJ Hidell from an online discussion on www.EMTlife.com www.EMTlife.com

Additional Components of the Additional Components of the Advance Directive PackageAdvance Directive Package• Durable Power of Attorney – The durable power of attorney names Durable Power of Attorney – The durable power of attorney names

an Agent to act on behalf of the Principal to make bank an Agent to act on behalf of the Principal to make bank transactions, sign Social Security checks, apply for disability, or transactions, sign Social Security checks, apply for disability, or access the Principal’s finances to pay the bills while an individual is access the Principal’s finances to pay the bills while an individual is medically incapacitated. medically incapacitated.

• Organ Donation – Registration is through the RMV when applying Organ Donation – Registration is through the RMV when applying for a MA driver’s license or through Donate Life New England at for a MA driver’s license or through Donate Life New England at www.donatelifenewengland.orgwww.donatelifenewengland.org . It is important to let family and . It is important to let family and friends know whether or not registration has taken place. FAQs at friends know whether or not registration has taken place. FAQs at http://www.mass.gov/rmv/license/organ_donorFAQs.htmhttp://www.mass.gov/rmv/license/organ_donorFAQs.htm . .

Bringing the Discussion to the PatientBringing the Discussion to the Patient

• Health care providers have the opportunity to bring the topic of Health care providers have the opportunity to bring the topic of Advance Directives to the community through patient education. We Advance Directives to the community through patient education. We need to identify barriers to completing Advance Directives and help need to identify barriers to completing Advance Directives and help to overcome them.to overcome them.

• Most of the content of Advance Directives are relevant for everyone Most of the content of Advance Directives are relevant for everyone – accidents happen.– accidents happen.

• In the same way that we plan for the unexpected, e.g. smoke In the same way that we plan for the unexpected, e.g. smoke detectors, health insurance, airbags in the cars, we can plan for detectors, health insurance, airbags in the cars, we can plan for unexpected health care needs in the event of personal incapacity.unexpected health care needs in the event of personal incapacity.

Barriers to Completing Advance DirectivesBarriers to Completing Advance Directives

• Patient and provider reluctancePatient and provider reluctance• Time constraintsTime constraints• AssumptionsAssumptions• Denial and procrastinationDenial and procrastination• Unrealistic expectationsUnrealistic expectations• Delaying until a crisisDelaying until a crisis• Discomfort with palliative care planningDiscomfort with palliative care planning• Lack of documentationLack of documentation• Cultural and health system barriersCultural and health system barriers• ReadinessReadiness• Unrealistic expectations of the success of resuscitation effortsUnrealistic expectations of the success of resuscitation efforts• Access to informationAccess to information• Complexity of making decisionsComplexity of making decisions• Inability to identify a proxyInability to identify a proxy• Lack of trust in advance directivesLack of trust in advance directives• Patients’ refusal to discuss the issue because they are overwhelmed when Patients’ refusal to discuss the issue because they are overwhelmed when

initially diagnosed with a chronic/terminal illness. initially diagnosed with a chronic/terminal illness. Robinson, Ruthie, Eagen, Mary K., Price, Tammy J. (2008)

Starting the ProcessStarting the Process

• Much of the process of writing a Living Will or choosing an Agent for Much of the process of writing a Living Will or choosing an Agent for a Health Care Proxy involves conversation.a Health Care Proxy involves conversation.

• Conversations with family and friends should allow for time to Conversations with family and friends should allow for time to consider options before putting it all on paper.consider options before putting it all on paper.

• It all starts with acceptance. “The death rate now, as in antiquity, It all starts with acceptance. “The death rate now, as in antiquity, remains one per life…” Henry Schneiderman, MDremains one per life…” Henry Schneiderman, MD

Questions to ponder along the wayQuestions to ponder along the way

• How do we, the health care team, honor your wishes for end-of-life How do we, the health care team, honor your wishes for end-of-life care?care?

• How would you envision a “good death”?How would you envision a “good death”?

• ““Support is a proud part of medicine. Our presence, our words, and Support is a proud part of medicine. Our presence, our words, and our avoidance of futile frenzy are great blessings for patient and our avoidance of futile frenzy are great blessings for patient and family.” Henry Schneiderman, MDfamily.” Henry Schneiderman, MD

Now that the hard part is done…Now that the hard part is done…

• … … will our Advance Directives be understood and honored?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.

We need to educate each otherWe need to educate each other

• Several research studies noted that there is significant Several research studies noted that there is significant misunderstanding among all health care providers with regard to misunderstanding among all health care providers with regard to the terms “Advance Directive” and “Living Will”the terms “Advance Directive” and “Living Will”

• In these studies it was clear that a DNR order was not a guarantee In these studies it was clear that a DNR order was not a guarantee that resuscitation attempts would not be madethat resuscitation attempts would not be made

• Research has shown that having Advance Directives does not Research has shown that having Advance Directives does not always have the intended effect. Health care teams need to be always have the intended effect. Health care teams need to be educated regarding Advance Directives so that the patient receives educated regarding Advance Directives so that the patient receives the appropriate level of care.the appropriate level of care.

Agents of ChangeAgents of Change

• As health care providers we can educate our patients about the use As health care providers we can educate our patients about the use of Advance Directivesof Advance Directives

• We can identify the barriers to creating Advance Directives and help We can identify the barriers to creating Advance Directives and help to modify those barriers with communicationto modify those barriers with communication

• We can only teach what we know – increasing our own knowledge We can only teach what we know – increasing our own knowledge about these documents increases the likelihood that we can about these documents increases the likelihood that we can successfully teach otherssuccessfully teach others

• We must also educate each other. We can identify knowledge We must also educate each other. We can identify knowledge deficits in our medical offices and help to clarify misunderstandingsdeficits in our medical offices and help to clarify misunderstandings

Links for more informationLinks for more information

• 5 Wishes 5 Wishes www.agingwithdignity.org/forms/5wishes.pdfwww.agingwithdignity.org/forms/5wishes.pdf

• ““Ten things you should know about health care proxies and living wills” Ten things you should know about health care proxies and living wills” www.malawforum.com/node/310www.malawforum.com/node/310

• Definitions and forms for Advance Directives Definitions and forms for Advance Directives http://www.massmed.org/AM/Template.cfm?Section=Public_Health_Resources&CONTENTID=7580&TEMPLATE=/CM/HTMLDisplay.cfmhttp://www.massmed.org/AM/Template.cfm?Section=Public_Health_Resources&CONTENTID=7580&TEMPLATE=/CM/HTMLDisplay.cfm

• Information regarding Advance Directives and Hospice Care Information regarding Advance Directives and Hospice Care http://www.hospicefed.org/hospice_pages/directives.htmhttp://www.hospicefed.org/hospice_pages/directives.htm

• End-of-life planning, Bill Moyer End-of-life planning, Bill Moyer http://www.pbs.org/wnet/onourownterms/http://www.pbs.org/wnet/onourownterms/

• Caring Connections, planning for end-of-life care Caring Connections, planning for end-of-life care http://www.rwjf.org/healthpolicy/product.jsp?id=50150http://www.rwjf.org/healthpolicy/product.jsp?id=50150

ReferencesReferences

• 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.

More ReferencesMore 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.