Advance Care Planning October 13, 2011 Deana Birkenheuer, BSN, RN www.hospiceofcincinnati.org “It’s not that I am afraid to die, I just don’t want to be there when it happens.” - Woody Allen 1975 Landmark Case Right to Die Karen Ann Quinlan Case Karen Ann Quinlan • A 21 year old who became unresponsive to painful stimuli after taking Valium while drinking alcohol • Placed on a ventilator for breathing and administration of artificial nutrition and hydration • After several days, it was determined that she was in a persistent vegetative state with no chance of recovery • Her parents requested removal of the ventilator as they believed this is not how Karen Ann would have wanted to live Karen Ann Quinlan • Initially, the hospital agreed to remove the respirator but then later refused • Quinlan’s parents took their request to a Morristown, NJ courtroom which refused their right to make this decision for Karen Ann • They then took the case to the New Jersey Supreme Court which sided with the parents and ruled in favor of removing the ventilator • Even with removal of the ventilator, Karen Ann actually lived for almost ten more years on artificial nutrition and hydration, dying June 11, 1985 Karen Ann Quinlan • Quinlan’s case was the first right-to-die case to reach a higher court within the United States • Quinlan’s case led to the development of ethics committees in healthcare institutions as well as the development of advance directives 1989/1990 Landmark Case Right to Die The Nancy Cruzan Case Nancy Cruzan • Profoundly injured in a car accident • She was not diagnosed as terminally ill • Dependent on artificial hydration and nutrition • Persistent vegetative state for five years before her parents requested removal of her feeding tube • A Missouri trial court gave permission for the artificial hydration and nutrition to be removed, but the Missouri Supreme Court overturned this decision Nancy Cruzan • The Missouri Supreme Court based its decision on: – Cruzan had no constitutional right to die – There was no clear and convincing evidence that she would not wish to continue her vegetative existence – Her parents, or guardians, had no right to exercise substituted judgment on their daughter's behalf. • Missouri wanted further proof that Cruzan would not want to have lived her life in this manner. Nancy Cruzan • Cruzan’s parents took their request to the U.S. Supreme Court in December 1989 but they refused to rule on removal of the feeding tube • However, they did rule in a 5 to 4 decision, that the state of Missouri did have the right to request convincing evidence that an incompetent person wants life- sustaining treatment withdrawn before making a decision Nancy Cruzan • On December 14, 1990 a Missouri circuit court ruled that new evidence presented by three more friends constituted "clear and convincing" evidence that Nancy would not want to continue existing in a persistent vegetative state. • The feeding tube was removed nearly eight years after her accident • Nancy died on December 26, 1990 surrounded by her family Patient Self-Determination Act -1991 • Goal: Educate patients on their healthcare decision making rights • As a condition of Medicare and Medicaid payment, health care providers in hospitals, skilled nursing facilities, hospices, etc. are required to: Patient Self-Determination Act -1991 (cont.) – Develop written policies concerning advance directives – Ask all new patients whether they have prepared an advance directive and include this information in their chart – Educate the staff and community about advance directives – Give patients written materials regarding the facility’s policies on advance directives and the patient’s right (under applicable state law) to prepare these documents • However, this does not require patients to have or complete advance directives Advance Directives National Advance Directives • No uniform advance directives throughout the United States • State laws for advance directives can vary and sometimes, even conflict • Some believe that Congress has not addressed the issue due to fear of facing political resistance as being perceived of overstepping states’ rights Barriers to National Advance Directives • Different requirements about who can serve as a health care agent • Different requirements for who qualifies as a witness for the advance directives • Differing definitions of conditions that lead to implementation of the advance directive • Differing language utilized in the document Ohio Advance Directives • Living Will • Durable Health Care Power of Attorney Living Will • Allows you to establish and document, in advance, the type of medical care you would want to receive if you were to become permanently unconscious or if you were to become terminally ill and unable to tell your physician or your family what kind of life-sustaining treatments you want to receive • Allows you to specify your wishes regarding anatomical gifts (organ and tissue donation) Durable Health Care Power of Attorney • A document that allows you to name a person to act on your behalf to make health care decisions for you if you become unable to make them for yourself • Becomes effective even if you are only temporarily unconscious and medical decisions need to be made Durable Health Care Power of Attorney • You need to have a discussion with whomever you choose to make sure they understand what your healthcare wishes truly are • If you have both a Living Will and a Durable Health Care Power of Attorney, the physician must comply with the wishes you state in your Living Will Ohio’s Do Not Resuscitate Law DNR Order • Entered into law in 1998 • Allows an individual to communicate their wishes about resuscitation to medical personnel inside or outside a hospital or nursing home setting • Allows emergency medical workers to honor an individual’s physician-written DNR Order • Protects emergency squads and other healthcare personnel from liability if they follow an individual’s DNR Order • Can be signed by a physician, certified nurse practitioner, or clinical nurse specialist, as appropriate DNR Order • DNR Comfort Care Arrest – The patient will receive all the appropriate medical treatment, which may include some components of resuscitation, until the patient has a cardiac or pulmonary arrest, at which point only comfort care will be provided • DNR Comfort Care – The patient has chosen only comfort care treatments even before the heart or breathing stops When is a DNR Revoked? • A patient who is alert and oriented can ask to rescind a DNR order at any time • If there is any reason to suspect that documentation has been altered • Pregnant patients cannot have a DNR status • When abuse is suspected from a caregiver Advance Directives • Who Should I Tell? – Durable Health Care Power of Attorney (DPOA) – Attending physician – Family members – Health care facility (upon admission) • Where should I keep them? – Give copies to anyone who may be involved in assisting to make your healthcare decisions – Keep a copy in a place that is easily accessible (ex: car glovebox, refrigerator) What if I Don’t Have Advance Directives? • Who will make my healthcare decisions for me, if I am unable: – According to Ohio Code 1337.16 • Guardian • Spouse • Adult children • Parents • Adult siblings Have You Completed Your Advance Directive? Advance Directives Completion • According to the U.S. Department of Health and Human Services, the literature suggests that only 18% to 30% of Americans have completed advance directives • Only 1 in 3 chronically ill individuals have completed advance directives Reasons Given for Not Completing Advance Directives • Written text of the forms are too difficult to understand • Cultural differences in end-of-life care may view as negative thinking or giving up too soon • Suspicious of this being a cost saving initiative for healthcare • Assume physician and family will know what they would or would not want done • Forms do not apply to every situation Major Reason Given by the Elderly • Most responded that they were waiting for their physician to address the matter with them during an office visit The Difficult Conversation • Most physicians are not comfortable with initiating or having this type of conversation with their patients. • Physicians expect the patient to ask limited questions or bring Advance Directives to the office, after seeing a lawyer Healthcare Professionals: Advance Directives • Often hospital staff may not be aware the patient has Advance Directives • Staff may not be aware of who the DPOA is • Staff is instructed to call a code immediately if the patient is found not breathing or not having a pulse, then ask questions later • The Advance Directives are not always referred to with the writing of new orders by physicians • Families are not always told the reasons for medications and/or that these treatments may be considered aggressive and have risky side effects Healthcare Professionals: Advance Directives • Paramedics cannot utilize a Living Will • There must be a DNR order signed by a physician in the home • In a medical crisis in the home, when 911 is called, most DNRs are revoked by the family What Can You Do? • Complete your own advance directives and not wait until a crisis occurs • Encourage discussions with friends and family members • Encourage elderly family members to discuss their wishes with their physician • Make sure that your DPOA is someone that will be an advocate for you and take this matter seriously when the time comes Midwest Care Alliance Choices: Living Well at the End of Life – Formerly known as Ohio Hospice and Palliative Care Organization – Advance Directives Packet; 5th edition – http://associationdatabase.com/aws/MCA/ass et_manager/get_file/32895?ver=72 Do Not Resuscitate Scenario DNR Scenario • A 72 year old male calls 9-1-1 with weakness. • The EMS crew places the patient on oxygen and obtains vital signs • Pulse 172, Respirations 18, BP 90/62 • Skin slightly pale • Awake, oriented but anxious • Placed on cardiac monitor which shows ventricular tachycardia • Patient is wearing a state DNR bracelet What Care is Appropriate? • Consider: – Patient is not in cardiac arrest – Patient is not in respiratory arrest – Patient is alert and oriented – So….what are his treatment options since he is a DNR? What Care is Appropriate? • Cardiac Medications? • Synchronized cardioversion? • Transfer to hospital emergency department with probable admission? • Continued oxygen? But wait…isn’t he a Do Not Resuscitate? DNR • DNR has no bearing in this situation because he is alert, oriented and not in any type of arrest. DNR Order • A DNR order is not effective until: – Respiratory or cardiac arrest occurs • A DNR order does not hasten death – In the event of arrest, DNR can dictate comfort care • A DNR order does not influence therapeutic interventions – For example, suctioning or use of oxygen MOLST Medical Orders for Life Sustaining Treatment MOLST • Based on the POLST paradigm – Used to describe programs that have consistent components but different names POLST In LaCrosse, Wisconsin • POLST implemented in LaCrosse in 1997 by Linda Briggs and Bud Hammes (Respecting Choices) • Research studies have been completed to demonstrate that this paradigm is effective in determining and implementing “what the patient wants for their end-of-life care” • Further information: www.polst.org Goals of the POLST / MOLST • To provide timely opportunities for informed end-of-life treatment decisions • For patients with: – Serious, life-limiting illnesses – A terminal illness – Advanced frailty – Others Interested in defining their care POLST / MOLST • Advance care planning is not a “one size fits all” discussion. • Must be individualized to each patient and their goals, values, stage of health, and readiness. • Discussion involves more than just checking off a list of questions. • Serves as a set of medical orders. • A portable document that transfers with the patient from one setting to the next. POLST / MOLST • Requires advanced care planning facilitation skills to address the appropriate stage of planning. • Requires presenting options and discussing potential outcomes of decisions. • Provides directions for providing or forgoing aggressive treatment. Role of Advance Care Planning Facilitator • Introduce the MOLST Program to patient/caregiver • Explore the understanding of the role of the durable power of attorney (DPOA) • Explore the patients goals/values regarding – Their medical condition – Potential complications – Past experiences – Concept of what it means to live well • Support and validate the patient as he/she makes informed treatment decisions • Make referrals, as necessary for the patient to feel comfortable with his/her treatment decisions POLST / MOLST •Discussion involves: •Discussion includes: – Patient – CPR wishes – Durable health care – Medical power of attorney interventions – Caregiver – Anyone else the – Antibiotic use patient may wish to – Artificial include nutrition/hydration POLST Use in Long-Term Care: A Multistate Study A Comparison of Methods to Communicate Treatment Preferences in Nursing Facilities: Traditional Practices Versus the Physician Orders for Life-Sustaining Treatment Program Hickman, Nelson, Perrin, Moss, Hammes & Tolle, 2010 POLST Use in Long-Term Care: A Multistate Study • Objective – To evaluate the effectiveness of the POLST program in comparison to traditional advance care planning • Design – Retrospective observational cohort study conducted between June 2006 and April 2007 • Setting – Stratified random sampling from 90 long term care facilities throughout Oregon, Wisconsin and West Virginia – 1711 residents POLST Use in Long-Term Care: A Multistate Study • Results suggest: – Residents with POLST forms were more likely to have orders about life-sustaining treatment preferences beyond CPR than residents without – No differences between residents with and without POLST forms in symptom assessment or management – Residents with POLST comfort care only orders were 59% less likely to receive life- sustaining treatments than residents with traditional DNR orders LaCrosse Advance Directive Study A Comparative, Retrospective, Observational Study of the Prevalence, Availability, and Specificity of Advance Care Plans in a County that Implemented an Advance Care Planning Microsystem Hammes, Rooney, & Gundrum, 2010 LaCrosse Advance Directive Study • Objective – To determine whether outcomes have changed over time for a managed, systematic approach to advance care planning • Design – Retrospective comparison of medical record and death certificate data of adults who died over a specified period of time in 2007/2008 compared to 1995/1996 • Setting – All healthcare organizations in LaCrosse County, Wisconsin • Participants – 540 adults who died in 1995/1996 – 400 adults who died in 2007/2008 LaCrosse Advance Directive Study Data collected in Data collected in P value 95/96 N=540 07/08 N=400 Deceased with 459 (85%) 360 (90%) 0.023 Advanced Directives *Advanced 437 (95.2%) 358 (99.4%) <.001 Directives found in the medical record where the person died *Deceased who 353 (77%) 324 (90%) <.001 had DPOA documents Treatment 98% 99.5% 0.13 decisions found consistent with instructions LaCrosse Advance Directive Study • From the data collected in 07/08 – 67% of deceased patients had a POLST document – 98.5% of POLST forms were in the medical record of the healthcare organization where the person died – The most recent POLST form was completed 4.5 months prior to death – 96% of all deceased patients (n=400) had either an Advance Directive or a POLST form at the time of death LaCrosse Advance Directive Study • Results suggest: – A high prevalence of advance care plans can be achieved and these care plans can be specific enough to assist with clinical decisions – It is possible to achieve a high rate of compliance between the patient’s choices as outlined on the advance care plan and the actual treatment decisions made AARP Public Policy Institute Improving advanced illness care: The evolution of state POLST programs Published in April 2011 http://assets.aarp.org/rgcenter/ppi/cons-prot/POLST-InBrief-04-11.pdf http://assets.aarp.org/rgcenter/ppi/cons-prot/POLST-Report-04-11.pdf MOLST in Ohio • Introduced as legislation in the summer of 2005 • Introduced by sponsor, Representative Nancy Garland (D) in the House Health Committee • Unable to achieve consensus due to objections from special interest groups • Form continues to be amended in response to the objections • A bill will likely be-reintroduced – time frame unknown MOLST in Ohio • When legislation passes, it will replace the current DNR form • It is not meant to replace the Living Will or Durable Health Care Power of Attorney • Task forces throughout the state are encouraging implementation of some type of MOLST form within healthcare organizations prior to passing the legislation Ohio MOLST Form – Version 11 • Discussion includes: – CPR wishes – Medical interventions – Antibiotic use – Artificial nutrition/hydration MOLST in Cincinnati Health Improvement Collaborative of Respecting Greater Cincinnati Choices Gundersen Lutheran Medical Foundation MOLST in Cincinnati • Linda Briggs (in conjunction with Respecting Choices) completed facilitator and train the facilitator programs in mid-January 2011 • ? Summer/Fall 2011 – Pilot project to begin at Mercy West Park LTC Facility • Other – Potential pilot projects at UC Medical Center – Various initiatives from the Christ Hospital Palliative Care Team – Catholic Healthcare Partners are encouraging use in their healthcare organizations – Hospice of Cincinnati has provided education to several physician offices throughout the Greater Cincinnati area • Here is a 10 minute video clip of an example of a POLST/MOLST conversation with Linda Briggs, an advance care planning facilitator. The conversation is being held with two daughters of a patient with Alzheimer’s. The patient is unable to participate in the conversation and prior to being unable to make her own healthcare decisions, she designated one of her daughters as her Durable Health Care Power of Attorney. References American Bar Association. (n.d.). Retrieved from http://www.abanet.org/publiced/practical/patient_self_determination_act.html. Briggs, L. & Hammes, B. (2010). Honoring patient preferences. Powerpoint presentation. Cluxton, D. (2008). Program description for Ohio. Retrieved from http://www.ohsu.edu/polst/programs/documents/OHProgramDescription.pdf. Collopy, K. (2010) What you should know about DNRs. EMS Magazine, 30 (8), 52- 57. Courts and the End of Life - The Case Of Nancy Cruzan. (2011). Retrieved from http://www.libraryindex.com/pages/3143/Courts-End-Life-CASE-NANCY- CRUZAN.html. Duties of health care providers. 1137.16. Retrieved from http://codes.ohio.gov/orc/1337.16 Hammes, B.J., Rooney, B.L. & Gundrum, J.D. (2010). A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. Journal of the American Geriatric Society, 58. 1249-1255. References Health Improvement Collaborative of Greater Cincinnati: http://www.the- collaborative.org/ Hickman, S.E., Nelson, C.A., Perrin, N.A., Moss, A.H., Hammes, B.J., & Tolle, S.W. (2010). A comparison of methods to communicate treatment preferences in nursing facilities: Traditional practices versus the physician orders for life-sustaining treatment program. Journal of the American Geriatric Society, 58.1241-1248. Morrow, A. (2011). Karen Ann Quinlan: A pioneer in the right-to-die movement. About.com palliative care. Retrieved from http://dying.about.com/od/ethicsandchoices/p/Karen-Ann-Quinlan-A-Pioneer-In-The- Right-To-Die-Movement.htm POLST: http://www.ohsu.edu/polst/ Respecting Choices: http://respectingchoices.org/ Sabatino, C.P., )2004). National advance directives: One attempt to scale the barriers. American Bar Association, Commission on Law and Aging. Wilkinson, A., Wenger, N., & Shugarman, L. R. (2007). Literature review on advanced directives. U.S. Department of Health and Human Services. Retrieved from http://aspe.hhs.gov/daltcp/reports/2007/advdirlr.htm. Questions? Thank You!
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