Making Sure Your End-of-Life Wishes Are Followed

US News

In 1990, Congress passed the Patient Self-Determination Act, giving a more formal role and voice for the health care wishes of patients and their families. The assumed and actual decision-making primacy of hospitals, doctors and other health care providers is so strong, however, that even 23 years later, it can be very hard for patients to be treated the way they want when they face serious medical problems.

[Read: How to Develop Effective End-of-Life Plans.]

Part of the difficulty is that people don't like to talk about death and sickness. They put off confronting what might happen should they become seriously ill or, as often happens later in life, physically or mentally unable to make decisions about their own medical care. With no advanced medical directives in place, and no sense if their loved one wants life-sustaining medical efforts or not, family members may have little moral or legal say in what health care providers do.

Advanced directives and surrogates are needed if end-of-life wishes are to be followed, several experts recently testified at a U.S. Senate Special Committee on Aging hearing. Simply having these directives in place does not guarantee good outcomes for patients or their families.

Without express and binding instructions about when to withhold care, hospitals and health care professionals generally have their own moral and legal obligations to keep a person alive as long as possible. When consumers are asked about their preferred end-of-life care, the committee was told, it turns out that they strongly favor less care, particularly if such care would be unlikely to lead to a cure and if it saddles the family with heavy health care expenses.

Slowly, more and more families are "having the conversation" about end-of-life preferences and care. Such discussions also are likely to lead to the development of formal documents. The documents may carry different names in different states, but the good ones share two attributes: They explain the type of care people want if they are seriously ill, and they name a health care surrogate to make medical decisions on their behalf should they be incapacitated.

[Read: How to Talk to Parents About Their End-of-Life Wishes.]

Even before having the conversation among family members, it might make sense to have a conversation with the person's primary physician, according to Amy Vandenbroucke, executive director of the National POLST Paradigm program. POLST is an acronym for "physician orders for life-sustaining treatment" - specific and legally binding medical directives designed for seriously ill patients likely to confront life-or-death medical decisions in the near future.

Health care advances have changed the playing field in terms of life-extending care and technologies, Vandenbroucke says. As a result, patients and their families may not know about current treatment standards or even the language used to describe them. Consulting a physician or other health care professional about such matters thus can help a family have a more productive discussion and shape a more effective set of advanced directives. The physician also needs to know details of applicable end-of-life rules in the patient's home state.

For example, Vandenbroucke says, in different states POLST orders may be known as MOLST (Medical Orders for Life-Sustaining Treatment), MOST (Medical Orders for Scope of Treatment), POST (Physician Orders for Scope of Treatment), LaPOST (Louisiana Physician Order for Scope of Treatment), COLST (Clinician Orders for Life-Sustaining Treatment), IPOST (Iowa Physicians Orders for Scope of Treatment), SMOST (Summary of Physician Orders for Scope of Treatment), TPOPP (Transportable Physician Order for Patient Preference) and SAPO (State Authorized Portable Orders).

Further, a patient's health care surrogate may also be called a decision-maker, durable power of attorney for health care, health care agent, health care decision maker, health care proxy, health care representative, health care surrogate, legal health care representative, legal medical decision maker, substitute decision maker, surrogate, power of attorney for health care or just plain proxy.

Advanced directives and surrogates are needed if end-of-life wishes are to be followed. But as Vandenbroucke and other experts testified recently at a U.S. Senate Special Committee on Aging hearing, simply having these directives in place does not guarantee good outcomes for patients or their families.

An advanced health care directive is not necessarily a binding set of instructions for doctors and hospitals, Vandenbroucke says. The directive may have been fashioned years or decades before the patient's current health crisis occurred. As a result, it may no longer be accurate or even reflect the patient's current wishes.

[Read: Reasons to Have That End-of-Life Conversation.]

POLST forms are recommended for seriously ill patients whose doctors would not be surprised if the patient died within a year, Vandenbroucke explains. Such a form contains patient and family care preferences that are specific to the patient's current condition. And because the form must be signed by a health care professional, its instructions are likely to be followed even if the patient is treated by emergency health care workers.

"Emergency medical technicians must do everything they can to keep you alive unless they have a medical order [not to]," Vandenbroucke says, adding that an advanced medical directive is not a medical order - a POLST form is.

However, advanced directives and POLST forms differ greatly among the states. James Towey, founder of Aging with Dignity and a long-time advocate of patient rights, began the Five Wishes advance directive program in 1998 with the late Eunice Kennedy Shriver. Five Wishes features a widely used advanced directive form, and all but eight states recognize the Five Wishes forms, according to Towey.

Still, Towey testified at the hearing that "advance care planning does not answer every possible question or take away all uncertainty. This can pose a challenge to clinical decision-making in emergency situations." He added that POLST forms could be a solution, but not all states have an acceptable form in place and the forms are too broadly used for patients whose medical condition does not fit the POLST model.

"Some physicians believe all adults should have a POLST, [and] others see it as the quick and easy advance directive that does not even require a patient signature," Towey testified. "There are real and legitimate concerns that this medical order model will override the wishes of patients and families."



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