End of Life Decision Making
Dr. Terman is the founder, CEO and Medical Director of Caring Advocates, a non-profit 501(c)(3) organization that helps people plan and then fulfill their end-of-life wishes. Caring Advocates offers its members education and clinical service: First to help them decide what their end-of-life wishes are, and then to help them express their Known Wishes so that others will honor them. To make sure Advance Care Planning forms are available, members can order and wear medallions that provide a phone number and web address to request immediate FAXes or downloads of their latest Advance Care Planning forms that are stored in a national registry. (More information is at www.CaringAdvocates.org.) One can also watch an 8.5-minute video on YouTube at http://www.youtube.com/watch?v=bRoovjK20F8 .
Dr. Terman is the author of The BEST WAY to Say Goodbye: A Legal Peaceful Choice at the End of Life (2007), Lethal Choice (2008) (a medical thriller), and Peaceful Transitions: Stories of Success and Compassion; Plan Now, Die Later—Ironclad Strategy (2011) [2nd Ed]. This combined book is also available as two separate books, both in print and in e-book formats. Stories of Success and Compassion is motivational; Plan Now, Die Later—Ironclad Strategy explains and guides readers on how to create an effective set of forms and select a trusted proxy/agent so that others will honor their wishes and they can attain the goal of a timely and peaceful transition. Dr. Terman created a new tool for Advance Care Planning called My Way Cards (or Natural Dying Living Will Cards for religious observers). The two goals of sorting the cards are 1) to inform people what it is like to live with Advanced Dementia (and other terminal illnesses) using plain, straightforward descriptions that have almost no medical jargon or medical diagnoses, but include illustrative line drawings to enhance understanding; and 2) to create a legal document, the Natural Dying—Living Will, that will be an effective Advance Directive. As they sort the cards, Advance Care Planners sort to make decisions about 48 items, one at a time. Each item represents a symptom, loss of function, unwanted behavior, or conflict with lifelong values. Sorting informs future decision-makers how the Advance Care Planner feels about each item so they can decide WHEN the patient would want Natural Dying. The Natural Dying—Living Will expresses a patient’s Known Wishes when s/he cannot speak for him/herself. (The three possibilities are: TF = “Treat & Feed, to try to keep me alive”; ND = “Natural Dying, when considered along with other items”; and E = “ENOUGH suffering—by itself—for Natural Dying.”)
Dr. Terman is the co-developer of two documents that are physically combined for enhanced strategic effectiveness: the Natural Dying Advance Directive and the Natural Dying Physician’s Orders (NDPO). The NDPO can be considered a “final” or “last” POLST (Physician Orders for Life-Sustaining Treatment) that was especially designed for people who A) do NOT want a prolonged dying while they possibly suffer from unrecognized pain in Advanced Dementia; B) DO want aggressive control of end-of-life pain and suffering (Palliative Sedation)—if no other way can provide relief; and, C) may want their last physician to comply with the wish to deactivate an intra-cardiac device (if they have one). To make sure others will honor one’s Known Wishes, the “Plan Now, Die Later—Strategy” adds the Natural Dying Agreement and the Natural Dying Affidavit. Patients and their physicians can both sign the Consent Form to Relieve Unbearable Pain by Palliative Sedation that can be attached to the NDPO , which also has a place to sign for Natural Dying if the specific conditions in the patients’ Living Will are met.
Strategic Advance Care Planning strives for physician compliance and expedited court rulings by providing the patient’s Known Wishes in the form of specific statements that are clear and convincing and applicable to the specific conditions described. Ideally, future challenges and conflicts leading to litigation can be avoided. Caring Advocates recommends a process of sorting that provides evidence for: the decisions were diligently made by a person who was mentally stable and possessed decision-making capacity and his/her choices were demonstrably consistent over time.
The ultimate goal is a timely, peaceful transition that can avoid years of a prolonged process of dying in Advanced Dementia with possible unrecognized, untreated pain and suffering. Items on the cards also cover traditional end-of-life choices, such as non-beneficial ("futile") treatment, the wish to relieve unbearable pain and suffering, and—importantly, instructions that can prevent premature dying, as in the middle stages of dementia—if the patient prefers. More information is at www.MyWayCards.org, www.PlanNowDieLater.org, and www.CaringAdvocates.org/presentations.php.