Advance Directive Legal Issues

Despite the prevailing belief among many healthcare providers and policymakers that advance directives are a necessary part of end-of-life planning, their usefulness has become controversial in recent years. Since 1991, when Congress passed the Patient Self-Determination Act, all Americans over the age of 18 have been encouraged to create an advance directive to ensure that their wishes about medical decisions are honored when they cannot speak for themselves. But in the ensuing decades, problems with the implementation of these documents have been widespread –  so much so that many healthcare professionals question whether they do more harm than good. 

The biggest problem with Advance Directives, critics claim, is their very nature — that is, they are prepared well in advance of the kinds of healthcare crises they are created to address. Very few people have the knowledge and foresight to anticipate every kind of medical issue they may one day face or how much or how little treatment they might want to address each one. Although these decisions may seem cut and dried on paper, in the real world they are fraught with nuance, and even the most specific directives rarely address every scenario that may arise. This ambiguity is often complicated by the wishes of the next of kin, who often don’t know or disagree about what the patient’s wishes would be under the circumstances at hand. As Dr. Sean Morrison, a palliative care physician at Mt. Sinai in New York writes in an opinion piece titled “Advance Directives/Care Planning: Clear, Simple, and Wrong”

“Preferences that patients express when they are well or in hypothetical scenarios typically do not reflect the complexity, emotion, or interpersonal elements of real-time decision making. Adaptation to physical (and cognitive) disability, desire to live to see a future event (e.g., a wedding, bar mitzvah), or fear of death when the hypothetical becomes real, all can influence real-time decision making in a way that cannot be accounted for in advance.”

Hence, healthcare providers are often left to “read between the lines” or guess what the patient might actually want. 

Another factor complicating the effectiveness of advance directives is advancements in medical technology and pharmaceuticals. A person creating an advance directive today has no way of knowing what kind of life-extending or even curative measures might be available even a year from now. A decision to forgo life-sustaining treatment if they have a certain “terminal” condition such as cancer would make no sense if curative treatment for that condition is available at the time a health crisis occurs. Additionally, new treatments might become available that were unknown at the time the directive was made, leaving healthcare providers no way of knowing if those treatments are something the patient might want in real time. In these gray areas, physicians need to rely on their own judgment and that of surrogates, whose goals and values may or may not reflect those of the person who is ill. 

Other barriers to effective advance care planning are mostly operational. Some examples include:

• The patient created an advance directive, but no one in the family knows where it’s kept. 
• The person changed their advance directive several times but didn’t destroy the old copies, leaving providers confused about how to proceed
• The person named as the healthcare proxy objects to the instructions in the directive and/or claims the patient verbally told them they had changed their mind
• The directive is vague, ambiguous or contradictory 
• “Incompetent revocation,” in which a conscious patient in a questionable mental state verbally rescinds the instructions in the directive

In all of these scenarios, the healthcare team and surrogates may be left with more questions than answers, in which case, the advance directive can do more harm than good. 

Sources

“The Patient Self-Determination Act. A matter of life and death”. American Academy of Physician Assistants. https://pubmed.ncbi.nlm.nih.gov/10141946/

“Advance Directives/Care Planning: Clear, Simple, and Wrong”. Journal of Palliative Medicine. https://www.nationalacademies.org/documents/embed/link/LF2255DA3DD1C41C0A42D3BEF0989ACAECE3053A6A9B/file/D37FC8DBC5686185BFEE6670CFCB09E92EB378653DCF?noSaveAs=1

If someone does not have an advance directive or healthcare proxy, the state laws where they reside indicate who can make decisions on their behalf. The designated decision-maker can vary by state but typically includes one of the following:

• A spouse or domestic partner
• Adult children 
• Parents 
• Siblings or close relatives

Default surrogate consent and family consent laws, which define a list of permissible and prioritized surrogates, currently exist in 46 states and the District of Columbia. The lists indicate who can act as a surrogate if a patient doesn’t have an advance directive and who the next point of contact should be as a potential candidate if the initial surrogate is unavailable. For example, if a spouse is not available to act as a surrogate, an adult child would be the next potential surrogate to contact. 

If all of these individuals are inaccessible, providers must seek another alternative for decision-making. This situation can occur when the patient is homeless or has no family or friends to act as a surrogate. In this scenario, healthcare decisions may be directed to one of the following three entities:

• A court-appointed guardian or conservator
• An ethics committee 
• Physicians 

Based on this chain of contact, a variety of individuals and entities can make decisions on behalf of patients who do not have an advance directive or healthcare proxy. Ultimately, there will always be someone who can decide on a patient’s behalf when necessary. But it is important to recognize that these decisions may not align with the patient’s preferences or values without an advance directive or a surrogate decision-maker in place.

Sources

“Advance Care Planning: Advance Directives for Health Care”. National Institute on Aging. https://www.nia.nih.gov/health/advance-care-planning/advance-care-planning-advance-directives-health-care

“Advance Directives and Advance Care Planning: Legal and Policy Issues”. ASPE. https://aspe.hhs.gov/reports/advance-directives-advance-care-planning-legal-policy-issues-0 

“Recent Updates to Default Surrogate Statutes”. American Bar Association. https://www.americanbar.org/groups/law_aging/publications/bifocal/vol44/bifocal-vol-44-issue3/recent-updates-to-default-surrogate-statutes/#:~:text=As%20of%20December%202022%2C%2046,have%20default%20surrogate%20consent%20laws 

“Who Makes Decisions for Incapacitated Patients Who Have No Surrogate or Advance Directive?”. AMA Journal of Ethics. https://journalofethics.ama-assn.org/article/who-makes-decisions-incapacitated-patients-who-have-no-surrogate-or-advance-directive/2019-07 

It is possible for an advance directive to be overridden by family members and healthcare providers under certain circumstances. Advance directive violations can subject healthcare providers to serious consequences due to liability, but this does not always prevent them from overriding them. Common examples of scenarios involving advance directive overrides can include: 

• A family member selected as a surrogate decision maker makes a decision for care that conflicts or disregards what is stated in the advance directive
• The healthcare provider administered life-extending treatments that were forbidden in the directive 
• The medical team was unaware that an advance directive existed
• The healthcare provider believed it was in the patient’s best interest to ignore the instructions in the directive

Healthcare providers are discouraged from violating advance directives; however, they have the legal right to choose not to comply with the directive instead. If the healthcare provider does not comply, they are responsible for transferring the patient to another healthcare provider who will honor the patient’s wishes. 

Although medical teams generally make every effort to provide care that is aligned with patient wishes and values, mistakes and intentional violations can still happen. A study from 2020 found that 38% of patients with treatment-limiting Physician Orders for Life-Sustaining Treatment (POLSTs) received intensive care that was contradictory to their indicated preferences. 

If a family member is appointed as a health care agent, they are responsible for making decisions regarding their loved one’s care if they are incapacitated and unable to make decisions for themselves. The expectation is for the health care agent to make decisions that are aligned with the wishes that have been outlined in the advance directive. However, the agent may, at times, make decisions that conflict with an advance directive, especially one that is ambiguous or out-of-date. Due to the nature of the decisions being made, it is always best to carefully select a health care agent since they will have the most authority in making decisions in a life-or-death situation. 

Sources

“Can Family Overrule an Advance Directive? What You Need to Know”. Trustworthy. ​​ https://www.trustworthy.com/blog/can-family-overrule-an-advance-directive 

Advance directives can be challenged in a court under certain circumstances, although it doesn’t happen frequently. Ensuring advance directives are updated regularly and taking proactive precautions can significantly reduce the likelihood that the documents will be challenged. Common reasons why someone may challenge an advance directive include:

• The state of residence has changed 
• Documentation has not been properly witnessed
• The document is illegible 
• The person listed as an agent is disqualified 
• The person for whom the document is intended for cannot understand it 
• Some requests are outside of standard medical care

It is important to understand that while advance directives are legal documents, every state has its own requirements for what makes an advance directive valid. This means that while all requirements might be fulfilled in the state where the advance directive was originally issued, it may not meet the requirements if the individual moves to another state. This can affect factors such as the number of witnesses required for certain documents or even extend into a court case to determine whether the advance directive can be honored at all. 

Another factor that can be influenced by the state of residence is whether an agent is disqualified. Some states forbid individuals from social service agencies or medical facilities from acting as agents on behalf of the individual that the documentation is intended to represent. In these situations, a new agent would need to be appointed. 

Sometimes the requests and wishes in an advance directive may include components that are outside of the standard medical practice or common procedures. The healthcare provider may want to clarify what is being requested or whether the request can be honored if it differs from those standards. An enhanced document can help provide more insight into the request and can be completed with legal counsel and a healthcare provider. The healthcare provider will still have the right to refuse to comply with the request if they feel it is not appropriate or if they are not comfortable with being responsible for fulfilling it. 

All of the details in an advance directive must be clear and easy to understand. Advance directives can be dismissed or challenged if they are illegible or cannot be completely understood. Similarly, if the individual whom the document is intended to represent can’t understand the meaning or purpose of the forms, the advance directive could be challenged in court since it could be argued that they didn’t understand what they were agreeing to at the time. 

Ultimately, it is important for individuals creating advance directives to work closely with legal counsel or a patient advocate to ensure that their documents are completed and executed appropriately. Involving multiple advisors and professionals in the creation and decision-making process can help inform individuals regarding the details that need to be included to reduce the risk of potential challenges in court. Additionally, ensuring that loved ones and healthcare providers have the same shared understanding of the requests indicated in the advance directive can aid in preventing confusion. 

Sources

“Advance Directives”. Health in Aging. https://www.healthinaging.org/age-friendly-healthcare-you/care-what-matters-most/advance-directives#:~:text=They%20should%20be%20reevaluated%20and,be%20easily%20challenged%20in%20court. 

“Advance Directives FAQ – Everything You Need to Know”. TalkDeath. https://talkdeath.com/advance-directives-faq-everything-you-need-to-know/ 

Whether healthcare providers can be held liable for not following advance directives can vary depending on state laws and the circumstances surrounding patient care. Since advance directives are legally recognized documents, it is not uncommon for grieving families or loved ones to question the implications of liability or whether an advance directive can be challenged in court. However, the matter of liability often depends on a variety of factors. 

When a healthcare provider violates an advance directive, three substantial consequences are possible:

• The hospital where the patient received care may be penalized 
• The state medical board may discipline the healthcare provider 
• The healthcare provider and the hospital may be subject to medical malpractice liability

In a situation where an advance directive isn’t followed, it is crucial to understand the rationale behind the decision as well as the actions that were taken instead. Although advance directives are legally recognized documents, this does not necessarily mean that healthcare providers are required to follow them. For example, if the patient’s advance directive includes wishes that aren’t medically sound or may directly conflict with the healthcare provider’s conscience or ethics, they aren’t required to comply with its terms. 

If a healthcare provider chooses not to comply with a patient’s advance directive, they have an obligation to transfer or refer the patient to another healthcare provider that is willing to comply. The decision not to comply does not give the healthcare provider permission to violate the patient’s wishes in the advance directive by taking action without consent. The actions taken that violate the advance directive are typically where liability and medical malpractice become significant concerns. For example, lawsuits about advance directives have increased in recent years due to healthcare providers resuscitating patients to save their lives despite documentation indicating that patients didn’t want to be resuscitated.

It is important for patients and their healthcare providers to maintain clear communication regarding the patient’s end-of-life wishes and have accurate documentation that reflects any changes to those wishes. Healthcare providers must be aware of their legal and ethical boundaries, and likewise, patients must be aware of their ability to transfer to another healthcare provider that can honor their requests. Ultimately, liability issues can arise, and the risk for potential malpractice can increase without a firm understanding on the part of the patient, their family, and the provider as to what the goals of care are.

Sources

“Ensuring Advance Directives Are Followed and Lawsuits Are Avoided”. The ASCO Post. https://ascopost.com/issues/july-25-2017/ensuring-advance-directives-are-followed-and-lawsuits-are-avoided 

“Myths and Facts About Health Care Advance Directives”. American Bar Association. https://www.americanbar.org/groups/law_aging/publications/bifocal/vol_37/issue_1_october2015/myths_and_facts_advance_directives/ 

Advance directives for healthcare are legally recognized documents that healthcare providers are required to follow in most situations. They are not, however, legally binding as a contract would be. According to the American Bar Association, healthcare providers may refuse to follow an advance directive if they have an objection of conscience or believe that the instructions contained in the directive are medically inappropriate. Further, unless you have a POLST or pre-hospital DNR order, first responders will most likely not follow an advance directive that indicates you do not want life-sustaining measures instituted since they are legally obligated to attempt to save your life unless a signed physicians order indicates otherwise. 

With that being said, advance directives often are not followed for reasons other than a healthcare provider’s refusal to do so. For example, in many cases, the directive is not available when a person presents in the emergency department with a life-threatening event. Even when the directive is in the patient’s medical record, providers may have difficulty locating it while simultaneously attending to the patient’s urgent medical needs. Oftentimes, the patient’s designated healthcare surrogate has a copy of the directive but that person can’t be located at the time a health crisis occurs. In these cases, healthcare providers are legally obligated to institute live-saving measures until the surrogate or a properly executed advance healthcare directive can be found. 

Another scenario in which providers may not honor an advance directive is when the designated healthcare agent disagrees with what the directive says. If the person who executed the directive is incapacitated, the designated surrogate or proxy is empowered to make decisions about their care. In consultation with the patient’s doctor, this person may decide that the wishes expressed in an advance directive are inappropriate given the person’s medical condition and the likelihood of recovery. 

Sources

“What is a legally binding agreement?” Termly. https://termly.io/faq/what-is-a-legally-binding-agreement/ 

“Myths and Facts About Health Care Advance Directives”. American Bar Association. https://www.americanbar.org/groups/law_aging/publications/bifocal/vol_37/issue_1_october2015/myths_and_facts_advance_directives/