By Richard B. Stuart DSW, ABPP
Co-chair Ethics Committee, Swedish/Edmonds Hospital
Getting the end-of-life treatment you want requires cooperation by three people who care. It begins with you creating a living will that describes treatments you do and do not want. Remember that if you lose capacity to speak for yourself before you declare your preferences, you are at risk of undergoing the treatments that may better serve the interests of others than respect your interests. You also need a provider who understands what you want and who will translate your preferences into a Conditional Medical Order (CMO) or Medical Orders for End-of-Life Intervention (MOELI) that can be entered into your medical record to increase the likelihood that the treatment you undergo is the treatment you want to receive. To complete your team, you need a healthcare surrogate (also known as an advocate or proxy) who will request the service you want when you are incapacitated. Your surrogate is like the helmsman who has the vital job of steering the craft over troubled waters by carefully following instructions from the captain. Without a firm hand, the ship will be at the mercy of the sea: it might reach port, but could also crash on a rock. Without a strong surrogate, you could get the care you want, or much more or much less treatment than you desire.
Similar to other states, Washington provides the following guidelines for a Durable Power of Attorney (DPOA) (“durable” because it remains in force after you lose decision-making capacity):
If the decision that the patient would have made if competent cannot be determined, then the authorized person(s) must determine that the proposed health care is in the patient’s best interests. What choice would this particular individual make if he/she were competent?
Based on the patient’s preferences and eccentricities the decision may not be what most people would choose. (RCW 7.70.065(1)(c))
This statute also stipulates that when no DPOA has been authorized, the statutory hierarchy of possible decision makers includes, in order: court-appointed guardian, attorney in fact, spouse or domestic partner, adult children, parents, or adult siblings. The following may not be substitute decision-makers: any of the patient’s physicians or owners, administrators, or employees of treating facilities unless also a spouse, domestic partner, adult child, or sibling.
The attached Step 4 of 6 Steps Living Will (www.6stepslivingwill.org) provides a form for creating a DPOA that includes contact information for principal and backup surrogates. To avoid potential conflict during crises, you should have only one surrogate, with a designated second person who can step in if the first is indisposed. It also allows for designation of those people you do not want to allow to participate in critical care discussions despite their being legally authoried to do so. Notarization of the document is recommended, but verification by the signature of a witness who is not your doctor, an employee of the facility in which you receive care, or an heir can suffice. It is important to check the requirements in any state in which you expect your DPOA to be used.
Since your life is in your surrogate’s hands, it is essential to choose your advocate wisely. Many people unthinkingly pick a partner or other relative, but the person closest to you may not be the one who can do the best job for you. I have witnessed situations in which the wheels fall off the tracks when surrogates were too emotional to speak during critical discussions, clearly did not understand the issues, were unreachable, or were either so argumentative that they alienated providers or so acquiescent that they let providers do as they wish.
A good surrogate has at least the following 7 characteristics: (1) knows you well and understands your core values, (2) has sufficient health literacy to understand the meaning of treatment alternatives and their effects, (3) is willing to put time into learning the details about each option, (4) is reachable so you can communicate any changes in your plans and so your surrogate can be contacted to participate in critical care decision-making, (5) has enough emotional control in pressured situations to be able to think clearly and collaborate, (6) is willing to control personal bias and allow your values to guide decisions, and (7) meets the standard of mental capacity. In the state of Washington, surrogates cannot be your physician or employees of the facilities in which you receive care. Other states may have additional restrictions.
Before creating a DPO, it is important to raise the following questions with the person you would like to name as your surrogate to make sure your preferences will be presented effectively. (1) “What did you hear me request?” This question is important because people often hear what they want to hear rather than what the other person says. Inviting your surrogate to participate in discussions that create the orders is an excellent first step toward this understanding. Doing so also allows your surrogate to get answers to any questions that may augment understanding during decision-making crises. It also allows your provider and surrogate to meet, which can facilitate challenging discussions. It is also important to continue the discussion with your surrogate over time to offer a reminder of what you want and alert your surrogate to any changes. (2 and 3) “If you were in my condition, which treatment(s) would you choose for yourself?” And “How do the choices you would make for yourself differ from those I made?” These questions are essential as a way to differentiate your preferences from what your surrogate would choose so yours prevail. (4) “Did I direct you to limit choices strictly to terms in my CMO or MOELI or did I give you the authority to add your own perspective or that of others you may consult?” Since critical care options are rarely black or white and the trajectories toward death are variable, there is often room for discussion. Make clear whether you grant some latitude, and if you do, stress that the final decision must accord with your values. (5) “How would you respond if a provider or significant other urged you to override my choices?” You want to be sure that your surrogate will choose the course you want and will resist pressure to do otherwise. I have seen providers say things like, “when my mother was critically ill, this is what I decided….” Statements like this are coercive and totally inappropriate because they put surrogates on the spot, with the implication that doing anything else is uncaring. These “what…if” discussions can be great training.
End-of-life treatment decisions are emotional for all concerned, and passionate objections can be raised that threaten family ties. For example, one son might argue that “Dad is a fighter and wants everything possible done” while his brother believes that “Dad has put up a good fight and now wants to end his life with dignity before pain and incoherence destroy his identity”. In another family, while discussing their sibling’s critical care, one sister who considers pain “interesting and endurable” might want treatment prolonged while the other believes one should “meet death standing up” and be allowed to die without having become disoriented when immobilized and attached to multiple irritating tubes. It is important to accept the fact that everyone is entitled to an opinion. But when one insists that others must agree, families can irreparably fall apart due to the impact of intense battles that could have been avoided by the clearly written statement of the patient’s wishes. If possible, a high level of understanding and agreement can result from inviting all interested parties to join a meeting in which the patient and provider lay out the logic of the patient’s choice.
Living wills, CMOs, and MOELIs are wonderful documents. But they may not have any impact on the treatment you undergo if you did not choose a surrogate wisely and helped that person prepare to act in your interests when decisions must be made quickly during medical crises.
Standardizing Protection of Patients’ Rights From POLST to MOELI (Medical Orders for End-of-Life Intervention).
Stuart RB, Thielke S.J Am Med Dir Assoc. 2017 Sep 1;18(9):741-745. doi: 10.1016/j.jamda.2017.04.022. Epub 2017 Jun 13.PMID: 28623154
Use of conditional medical orders to minimize moral, ethical, and legal risk in critical care.
Stuart RB, Birchfield G, Little TE, Wetstone S, McDermott J.J Healthc Risk Manag. 2022 Jan;41(3):14-23. doi: 10.1002/jhrm.21487. Epub 2021 Nov 17.PMID: 34791745