Understanding advance directives
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The document discusses end-of-life issues, addressing common assumptions people hold about medical communication, prognosis, and advance directives. It outlines the role of physicians and the evolution of hospice care in the U.S., emphasizing the importance of patient autonomy, veracity, and informed decision-making. Additionally, it explains advance directives, including health care surrogates and living wills, and highlights the need for clear communication between patients and healthcare providers regarding treatment options and expectations.
Understanding advance directives
- 1. Issues at The End of Life Robert Miller MD/ ASPEC/Aug 2021
- 2. Assumptions That May Not Be True 1. Most people assume if their health is in decline that: • trust the doctor to tell them the truth • assume the doctor can accurately predict their future outcome • will understand what he/she says • they will always want to know the truth (even if it’s bad) • with the information will make better decisions 2. Most people know what their values are • and can predict how they will feel in the future even if things change (and they can write this all down for future reference) • and assume their family knows how they feel and agrees
- 3. Areas of confusion involving end of life decisions. - Does incurable mean terminal, and how long is terminal? - What does palliation mean and what interventions are included? - Do people really understand their status? - Do advance directives result in ‘better’ outcomes?
- 4. The Reinvigoration Of A 13th Century Hospice In The Swiss Alps Dr. Miller/s Bona Fides in Palliative Care - Radiation Oncologist (1976-2020) as many as 50% of the patients were treated with palliative approach - Board member and lectured for Suncoast Hospice in 1980-90’s - Founding member and first national president of the Academy of Hospice and Palliative Medicine - Chairman of ethics committee for years at Saint Anthony’s - Personal experience with multiple family members who expired under hospice care
- 5. The modern concept of hospice was later developed in England in 1967 by Dr. Cicely Saunders. By the 1970’s small volunteer hospices were being developed in the Unites States. Suncoast Hospice started in Pinellas in 1977 and by early 1980’s was one of the largest in the world. Medicare added a hospice benefit in 1982. Instead of multidisciplinary (multiple specialties led by a physician) it was interdisciplinary (often headed by social worker or clergy). I thought we needed to clarify the role of physicians and the need to develop a specialty (expertise) in palliative care (medicine) . We split from the NHO (National Hospice Organization) to form the AHP (Academy of Hospice Physicians)
- 7. When we started there was confusion about the definition of ‘terminal and palliation’ and concerns about the ethics of withdrawing life prolonging interventions (esp food and water). Physicians can now specialize in palliative care medicine.
- 8. Cardinal Principals of Medical Ethics Autonomy - the patient has the right to refuse or choose their treatment. Beneficence - a practitioner should act in the best interest of the patient. Nonmaleficence - "first, do no harm" Justice – fair distribution of scarce health resources Veracity - truthfulness
- 9. Quality of ‘medical care’ for centuries was so problematic that the emphasis quite appropriately was to at least try not to hurt people.
- 10. Changing Priorities in Medical Ethics up to 1950’s Nonmaleficence Autonomy Beneficence Justice Veracity Quality of ‘medical care’ for centuries was so problematic that the emphasis quite appropiratley was to at least try not hurt people.
- 11. Changes in Physicians' Attitudes Toward Telling the Cancer Patient (Novack. JAMA 241:897-900, 1979) In 1961 88% of patients were not even told they had cancer, by 1977 this had dropped to 2%
- 12. Tuskegee Study of Untreated Syphilis in the Negro Male
- 13. The Tuskegee Timeline In 1932, the USPHS, the “Tuskegee Study of Untreated Syphilis in the Negro Male” Participants’ informed consent was not collected. Researchers told the men they were being treated for “bad blood,” By 1943, penicillin was the treatment of choice for syphilis and becoming widely available, but the participants in the study were not offered treatment. In 1972, an Associated Press story about the study was published. As a result, the Assistant Secretary for Health and Scientific Affairs appointed an Ad Hoc Advisory Panel to review the study and stopped it. Maybe Veracity is Important
- 14. Changing Priorities in Medical Ethics 1960’s -2000 Nonmaleficence Autonomy Beneficence Justice Veracity
- 15. November 30, 2010 Medscape medical ethics survey of over 10,000 physicians: Would you ever hide information from a patient about a terminal or preterminal diagnosis, because you believe that it will bolster their spirit or attitude? 59.8% : "tell it exactly as I see it“ 23.8% : "it depends." 14.6% :indicate that they soften the news and "give hope even if there is little chance." 2% : indicate that unless a patient is going to die imminently, they don't tell him or her how bad the situation is
- 16. The Truth Will Set You Free? “Tell me lies, tell me sweet little lies” Fleetwood Mac “Still a man hears what he wants to hear and disregards the rest.” Paul Simon Conversation is often ‘Ambivalent-Ambiguous’ Exchanges (“Does this dress make me look fat?”)
- 17. “The single biggest problem in communication is the illusion that it has taken place”. George Bernard Shaw 1856–1950
- 18. No ‘One size fits all’ 1.Patient has the right to be given all available information (veracity) 2.Patient has a right to decline information (autonomy) 3.Patient has the right to make decisions regardless of whether he understands his medical status 4.Often there is very little useful or accurate information available “Does anybody really know what time it is?” Chicago Transit Authority
- 19. Palliation or Curative Curative Palliative Do everything Do nothing Seems a little simplistic
- 20. Curative Active Palliative Supportive Goal cure prolong life symptoms symptoms Cancer attack attack attack ignore Therapies all all mild chemo/XRT analgesics Morbidity major major minor none Mindset “win” “fighter” “make me “let me go” comfortable” Palliation or Curative for health-related (cancer) suffering
- 21. Survey question to hospice bereavement staff If the families complain about the doctor after the patient dies, is it because: A. He was too optimistic (false hope) B. He was too pessimistic (too negative) Answer: 50% A and 50% B
- 22. Actual Survival Curve with A median survival of six months (half live more than 6 months and have live less than 6 months) The public’s understanding of a survival chart if the patient was “given six months to live” Every one is alive at 5.9 months and every one dead by 6.1 months Survival Survival Months
- 23. Dies too soon False hope Lives too long Too negative
- 24. Karnofsky Score
- 25. Terminal = last 6 months (2 months)
- 26. Cancer patients' insight into treatment, prognosis, and unconventional therapies. • The authors interviewed 190 patients with metastatic cancer • Only 55% of the patients were aware that their cancer had spread, and only 48% knew the location of their metastases. • Patients were optimistic about their treatment; 37% thought it would cure them Eidinger. Cancer 1984 Jun 15;53(12):2736-40.
- 27. Interview with 190 patients with metastatic patients • Correctly knew cancer had spread: 55% • Education: 1– 8 grade: 47% 9 -12 grade: 56% 13+: 68% • Correctly knew where: 48% Eidinger. Cancer 1984 Jun 15;53(12):2736-40.
- 28. How much do patients understand? Interview with 100 cancer patients Actual Patient Thought Curative 90% (c) 10% (p) Palliative 33% (c) 67% (p) MacKillop Br J Canc 1988;58:355
- 29. Understanding the risk with bone marrow transplant: “What’s the risk of death by 1 Year?” Patients and doctors were too optimistic about outcome
- 30. Consequence of Being Overly Optimistic those who understood their limited prognosis only 15% wanted aggressive therapy versus 61% in those overly optimistic Weeks JAMA 1998;279:1709
- 31. Making Accurate Survival Predictions like a 3-Handed Economist Median survival information is almost meaningless until you actually treat the patients and see if they respond There are three kinds of lies: lies, damned lies, and statistics. Benjamin Disraeli (1804 - 1881)
- 33. Assumptions That May Not Be True 1. Most people assume if their health is in decline that: • trust the doctor to tell them the truth • assume the doctor can accurately predict their future outcome • will understand what he/she says • they will always want to know the truth (even if it’s bad) • with the information will make better decisions 2. Most people know what their values are • and can predict how they will feel in the future even if things change (and they can write this all down for future reference) • and assume their family knows how they feel and agrees
- 34. Two main types of advance directives are: designation of health care surrogate and living will.
- 35. Designation of Health Care Surrogate: •Let you choose another person to make medical decisions based on your wishes for medical treatment, if you are not able to make your own decisions or if you choose not to make them for yourself. •Allows you to choose a health care decision maker who will be able to honor your wishes. You should select one person and designate an additional person as a backup.
- 36. Living Will: •Let you choose the kind of health care you do and do not want if you have: • A terminal or end-stage condition, and there is little or no chance of meaningful recovery • A condition of permanent and irreversible unconsciousness, such as coma or vegetative state • An irreversible and severe mental or physical illness that prevents you from communicating with others, recognizing family and friends, or caring for yourself in any way •Goes into effect only if you are no longer able to make decisions or communicate your wishes yourself and are in one of the three conditions listed above.
- 37. By Florida law, if you do not choose a designated health care surrogate, a proxy (decision maker) will be appointed in the following order of priority: •Court-appointed guardian •Spouse •Majority of adult children (who are readily available) •A parent •Majority of adult siblings (who are readily available) •A close adult relative •A close friend who knows you well •A licensed clinical social worker
- 38. Page 1
- 39. INSTRUCTIONS FOR MY HEALTH CARE SURROGATE If I am unable to communicate or make my medical decisions, my health care surrogate (HCS) will: • Talk to my health care team and have access to my medical information • Authorize my treatment or have treatment stopped based on my choices and values • Authorize transportation to another facility if needed • Make decisions about organ/tissue donation based on my choices • Apply for public benefits, such as Medicare/Medicaid, on my behalf • Ensure my comfort and management of my pain • Involve palliative care as a way to ensure my comfort • Honor my written or oral wishes for end-of-life as designated in my living will
- 40. My health care surrogate’s authority only begins when my doctor decides that I am unable to make my own health care decisions, UNLESS I initial either or both of the following boxes: _________ My health care surrogate can receive my health information immediately. _________ My health care surrogate can make health care decisions immediately. If I am able to make decisions and disagree with any choices made by my health care surrogate, MY choices will be honored.
- 42. Page 2
- 43. I understand that this living will becomes effective only when I am no longer able to communicate, or I am not able to make my health care decisions AND when two physicians have determined that I have one of the following: • A terminal or end-stage condition, and there is little or no chance of recovery • A condition of permanent and irreversible unconsciousness, such as coma or vegetative state • An irreversible and severe mental or physical illness that prevents me from communicating with others, recognizing my family and friends, or caring for myself in any way LIVING WILL
- 45. Activating an Advance Directive in Hospital 1. The medical staff need to be aware of the existence of the document 2. The attending physician (or two physicians) needs to review the document and determine that the requirements have been met (legal document, patient cannot communicate decisions and the terminal condition exists) 3. The physician then enters a DNR order (do not resuscitate order) into the chart (computer) and other appropriate orders (e.g. comfort measures, discontinuing other interventions)
- 46. Some Resources - Florida Statutes (Chapter 765) go to http://www.leg.state.fl.us/Welcome/index.cfm - BayCare section on advance directives: https://baycare.org/for- patients/advance-directives - National Institute on Ageing: https://www.nia.nih.gov/health/advance-care-planning-health- care-directives
- 48. Advance Care Planning: Health Care Directives Making Your Health Care Directives Official A lawyer can help but is not required. Many states have their own advance directive forms. Your local Area Agency on Aging can help you locate the right forms. You can find your area agency phone number by calling the Eldercare Locator toll-free at 1-800-677- 1116 or by visiting https://eldercare.acl.gov.
- 49. POLST - Physician Orders for Life-Sustaining Treatment
- 50. Outpatient DNRO order should be printed on yellow paper and placed on the refrigerator (to keep paramedics from attempting CPR) something called POLST, Physical Order for Life- Sustaining Treatment (in Florida it is called DNRO, form 1896) http://www.floridahealth.gov/licensing-and-regulation/trauma-system/_documents/dnro-faq.pdf A Do Not Resuscitate Order (DNRO) is a form developed by the Florida Department of Health to identify people who do not wish to be resuscitated in the event of respiratory or cardiac arrest. A DNRO is a physician’s order to withhold or withdraw resuscitation if a patient goes into respiratory or cardiac arrest. When the DNRO is presented to an emergency medical technician or paramedic in a setting other than a health care facility, the form may be honored. Facilities may honor the form, but they may also require their own internal form
- 57. When making health care decisions for me, my health care surrogate should think about what action would be consistent with past conversations we have had, my treatment preferences as expressed in Part Two (if I have filled out Part Two), my religious and other beliefs and values, and how I have handled medical and other important issues in the past. If what I would decide is still unclear, then my health care surrogate should make decisions for me that my health care surrogate believes are in my best interest, considering the benefits, burdens, and risks of my current circumstances and treatment options. Florida is a ‘substituted judgement’ state, ranked ahead of ‘best interest’
- 59. - willfully and voluntarily make known my desire that my dying not be artificially prolonged under the circumstances set forth below, and I do hereby declare that: - If at any time I am incapacitated and - (initial all that apply) I have a terminal condition, or I have an end-stage condition, or I am in a persistent vegetative state
- 60. - and if my attending or treating physician and another consulting physician have determined that there is no reasonable medical probability of my recovery from such condition, - I direct that life-prolonging procedures be withheld or withdrawn when the application of such procedures would serve only to prolong artificially the process of dying, and that I be permitted to die naturally with only the administration of medication or the performance of any medical procedure deemed necessary to provide me with comfort care or to alleviate pain
- 62. Palliative care, sometimes referred to as “comfort care,” is specialized medical care and support for patients living with a serious or life-limiting illness. Our focus is to relieve pain, symptoms and stress at any time during a serious illness and to support patients and families as they work through difficult medical decisions