What If Advance Directives Are Ignored? | Special Needs Alliance (2024)

By Professor Kim Dayton

Making medical and financial choices for an aging parent or other adult with special needs can be stressful. Health care directives and financial powers of attorney are meant to establish an agent’s decision-making authority, but in practice, it doesn’t always work that way. Time and again, health care professionals ignore medical preferences and financial institutions challenge an adult child who’s simply trying to pay Mom’s bills. It can be infuriating. But there are steps you can take to minimize the likelihood that bureaucracy and miscommunication will thwart efforts to assist.

Health Care Directives

A health care directive combines instructions regarding an individual’s preferences for treatment with the appointment of someone (the “agent” or “surrogate”) to act on the person’s behalf. It may state that extreme life-sustaining measures should be avoided or, to the contrary, that all possible medical treatments and measures should be undertaken.

Frankly, the conversations an individual has with the agent, other family members and health care professionals are as significant as the document itself. While the agent and others close to the individual should have copies, it’s just as important for them to understand the values and rationale underlying the preferences described. It should also be explained to other relatives why the agent was chosen. Warring family members can cause chaos. (For tips on having this discussion, check out The Conversation Project.)

Advocates stress that people with intellectual disabilities should be as actively involved as possible in making their own medical choices, and with the growing focus on supported decision-making, it’s increasingly common for them to have health care directives. Even though it can be difficult to determine whether these individuals fully understand their options, and discerning their wishes can be challenging, it’s essential that such documents accurately reflect any health care and related preferences that they may have regarding treatment. (Information regarding health care directives for persons with intellectual disabilities and a workbook for writing an advanced directive are available from Caring Community).

Healthcare directives should be reviewed periodically, because people’s opinions may vary as they get older. They may also wish to change agents, switching from a spouse or parent to an adult child or sibling.

Talk to the Doc

Before creating the directive, discuss medical options candidly with a trusted physician. An article published by Annals of Internal Medicine reports that “only 12 percent of patients with an advance directive had received input from their physician in its development, and physicians were accurate only about 65 percent of the time when predicting patient preferences; they tended to assume that patients would want less life-prolonging treatment than they actually desired, even after reviewing the patient’s advance directive.” ¹

Be sure that medical records indicate that a directive is in place and where a copy can be found. Share this information with all new medical professionals.

At the Hospital

Take the directive with you whenever visiting a hospital or nursing facility. Hospitals are required by law to ask if an incoming patient has a health directive and to include details in the person’s medical chart. But that doesn’t ensure that doctors and nurses will actually read the directive. Furthermore, if a doctor issues a “Physician Order for Life-Sustaining Treatment” (POLST) that conflicts with the directive—even if the agent is actively objecting to a particular regimen—health professionals tend to follow the doctor’s instructions. In some states, the POLST protocol was developed by medical professionals without input from patient advocates, and a POLST can generate serious potential conflicts if it is inconsistent with the patient’s health care directive.

The potential for controversy over medical treatment for a person unable to make his or her own decisions underscores the importance of choosing an agent who will not be intimidated by medical professionals and will boldly represent the patient’s wishes. The law clearly bars doctors from giving unwanted treatments. Even when the written directive is unclear, if a physician ignores an agent’s attempts to enforce the patient’s preferences, there are grounds for a lawsuit.

On the other hand, if doctors believe that a requested procedure would be futile, they can refuse treatment, although they may be required to refer families to other medical professionals. It should be noted, also, that if parents refuse care that physicians are convinced would prolong the life of a minor child, different rules may apply and, in extreme cases, the state may intervene.

Financial Power of Attorney

A financial power of attorney (POA) grants an agent the authority to make property- and money-related decisions on someone else’s behalf. Those rights may be narrowly defined—such as paying bills—or wide-ranging. Most states don’t require financial institutions to recognize POAs, and many banks have developed their own forms. They sometimes refuse to respect an “old” POA. This is, at least partly, a reaction to the widespread financial abuse of seniors, but in many cases, it simply creates obstacles for family members who are trying to help out.

Be Proactive

To avoid a crisis, contact organizations where the individual maintains accounts or conducts other financial transactions ahead of time. Give them copies of the POA, answer any questions they may have and—although there is no law requiring it—get signed any forms they require.

On the other hand, if you’re face-to-face with an uncooperative bank teller, ask to speak with the branch manager. If necessary, ask that the bank’s legal department be contacted. You may also want to ask the attorney who drafted the POA to make some phone calls.

Dual Residence

If the individual divides his/her time between two states, you need to account for the possibility that state laws differ. That means either drafting the POA and health care directive with both jurisdictions in mind, or having two versions of each document. (See https://fivewishes.org/shop/order/product/five-wishes-advance-directive for suggestions on writing a healthcare directive that meets most states’ technical requirements.)

My basic message is that you shouldn’t wait for an emergency before pulling directives from the safety deposit box. In fact, don’t keep them in a safety deposit box at all! Lay the groundwork for smooth acceptance of your documents when they’re needed most. With a little upfront planning, potentially tense situations can be a lot more manageable.

¹ Mary Butler, Edward Ratner, Ellen McCreedy, Nathan Shippee, Robert L. Kane, “Decision Aids for Advance Care Planning: An Overview of the State of the Science,” Annals of Internal Medicine (November 25, 2014).

About this Article:We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visitFind an Attorney.

Requirements for Reproducing this Article:The above article may be reprinted only if it appears unmodified, including both the author description above the title and the “About this Article” paragraph immediately following the article, accompanied by the following statement: “Reprinted with permission of the Special Needs Alliance –www.specialneedsalliance.org.” The article may not be reproduced online. Instead, references to it should link to it on the SNA website.

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What If Advance Directives Are Ignored? | Special Needs Alliance (2024)

FAQs

What happens if an advance directive is not followed? ›

Even when the written directive is unclear, if a physician ignores an agent's attempts to enforce the patient's preferences, there are grounds for a lawsuit.

What is the controversy with advance directives? ›

Controversy includes such matters as whether advance directives create more confusion than clarity about a patient's wishes, whether they can always be taken as expressing the true desires of a patient, and whether healthcare staff should always follow them.

Why would a physician not honor an advance directive? ›

This means that your health care provider and proxy will do their best to respect your advance directives, but there may be circ*mstances in which they cannot follow your wishes exactly. For example, you may be in a complex medical situation where it is unclear what you would want.

What are the barriers to advance directives? ›

On the patient's part, lack of knowledge, fear of burdening family, and a desire to have the physician initiate the discussion are common barriers. Once the advance directive is complete, barriers to implementation include vague language, issues with the proxy decision maker, and accessibility of the advance directive.

Which of the following can supersede an advance directive? ›

An oral designation of surrogate supersedes a previous written directive. A person may give an individual health care instruction orally to any person at any time.

Can a physician go against the patient's advance directives? ›

Even though advance directives are legally recognized documents, there are times that a health care provider may reject a medical decision made by you or your health care proxy based on your advance directive. For example: When the decision goes against the individual health care provider's conscience.

What is one of the main problems with advance directives? ›

Unintended negative consequences of advance directive legal restrictions may prevent all patients, and particularly vulnerable patients, from making and communicating their end-of-life wishes and having them honored.

Are advance directives legally binding in all 50 states? ›

Advance directives are legal throughout the United States. Governing laws vary so be sure to obtain an advance directive that complies with your state's laws. You do not need an attorney to complete an advance directive.

What is the personal identity problem with advance directives? ›

The personal identity problem expresses the worry that due to disrupted psychological continuity, one person's advance directive could be used to determine the care of a different person.

What will happen if a patient's family members disagree about the care of an incapacitated patient? ›

“In cases where the patient cannot speak for himself (e.g., the patient is unconscious), the law designates a specific person to serve as his medical decision-maker. This person is supposed to make the decisions that the patient would have wanted and advocate for the patient's best interests.

Who should make medical decisions when a patient lacks an advance directive? ›

If your treatment wishes are not known, the surrogate must try to determine what is in your best interest. The people providing your health care must follow the decisions of your agent or surrogate unless a requested treatment would be bad medical practice or ineffective in helping you.

What is the difference between a DNR and an advance directive? ›

Stated simply: A do-not resuscitate order says that if your heart stops beating, or if you stop breathing, you don't want to be resuscitated. An advance directive is more general. You can specify your wishes if you are incapacitated.

What do you think is the biggest barrier to getting people to complete an advance directive? ›

In many cases the patient is incoherent and unable to make decisions. Family members are often unprepared to make difficult end-of-life decisions, which leaves hospitals and physicians with the current default of taking aggressive measures in an attempt to extend life or resolve the ailment.

What are the disadvantages of advance care planning? ›

Advance care planning can also oversimplify the decision making process, as such decisions are inherently personal, will change of time, and are influenced by a range of sociocultural and health literacy factors.

What is the biggest barrier to healthcare access? ›

The Biggest Barriers to Accessing Healthcare — and 10 Things You Can Do to Address Them
  • Worrisome Wait Times.
  • Inadequate Office Hours.
  • Problematic Provider Shortages.
  • Transportation Troubles.
  • Language Limits.
  • Racial Bias.
Jan 4, 2023

What happens if a directive is not implemented? ›

If a Member State fails to implement a Directive timely or correctly, the Directive itself becomes binding on the Member States, meaning that parties in proceedings against the state may rely on provisions of the untimely or incorrectly transposed Directive.

Who makes medical decisions if you are incapacitated? ›

First in line is your spouse, followed by your adult children, your parents, and then your siblings. More distant relatives like nieces, nephews, grandparents, and others may also be called on.

What is the advance directive law in California? ›

An advance health care directive lets your physician, family, and friends know your health care preferences, including the types of special treatment you want or don't want at the end of life, your desire for diagnostic testing, surgical procedures, cardiopulmonary resuscitation and organ donation.

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