Everything you need to know about advance care directives

QMedic Team

elderly woman with dementiaAdvance care directives (ADs) are legal documents that give a named healthcare agent the ability to execute the medical decisions of a person approaching end of life, should the Court and/or medical team deem the healthcare recipient unable to make their own decisions. 

“As humans, we’re not wired to accept death. It’s frightening and final. There’s so much apprehension surrounding the topic that it’s understandable why we don’t want to focus on it.”

~ Jon Radulovic, Vice President of Communications for the National Hospice and Palliative Care Organization *

We’re human. We wait and wait and wait. But the reality is that it’s never too early for your loved one to create an advance care directive, especially if she is in the early stages of Alzheimer’s/Dementia and may soon thereafter not be of sound mind to execute medical decision-making.

The numbers don’t lie. According to a New England Journal of Medicine study, over 70% of patients are unable to make medical decisions for themselves during the final days of their lives. And yet, sadly, only 25% of adults complete an advance care directive before they die. It’s time to change that.

AARP provides a great free resource to review and print advance care directive forms that are published by legal and medical associations in each of the 50 US states.

Here are some guidelines for completing the advance care directive and related materials for yourself or loved one...

Appointing a healthcare agent

A healthcare agent may be a family member, close friend or anyone whom your loved one trusts to carry out medical decisions and wishes in good faith. Before putting pen to paper, your loved one should verbally communicate and discuss their wishes with their preferred agent and ensure that the agent is willing to accept this responsibility.

They should also consider appointing a second agent should the first become unwilling, unable or unavailable to act on her behalf.   

In most states, the law requires that your loved one sign the advance care directive, or direct someone else to sign it, in the presence of two adult witnesses.   The witnesses will need to sign the document as well in order to attest that the healthcare recipient is at least 18 years of age.

If your loved one changes her mind about her named agent, she can notify her agent or doctor at any point in writing, destroy all physical and digital copies of the advance care directive, or sign and date a new advance care directive naming a new healthcare agent and declaring the old directive null and void.

Importantly, if you name a spouse as the healthcare agent and later divorce, the advance care directive where he or she is named as the agent automatically dissolves in most states. 

If your loved one fails to appoint a healthcare agent prior to becoming incapacitated, many states will appoint a decision-maker on their behalf. Usually, this will be the closest relative to your loved one, whether or not this conflicts with your loved one’s wishes.

POLST Form vs. Advance Directive

Check out Polst.org, another great source for end-of-life planning that features POLST forms for your state. POLST stands for Physician Order for Life-Sustaining Treatment. In some states, it may be known as MOLST, MOST, POST.

A POLST Form is a medical order for the specific medical treatments desired during a medical emergency. It is designed for individuals near the end of life with serious illness or advanced frailty.

Whereas the Advance Directive provides general guidance to clarify your priorities and values, the POLST Form gives more specificity around the treatments you prefer. The AD and POLST Form go hand-in-hand in end-of-life planning.

If you are less frail and not approaching end of life, the POLST Form does not need to be filled out. It is still a good idea to complete the AD as early as possible and update it periodically.

After you complete the written advance directive and POLST form, back them up with a video supplement

smartphone video of advance care directiveIn a survey of 700 physicians and 13 hospitals, Dr. Fred Mirarchi of University of Pittsburgh Medical Center (UPMC) noted that “interpretation errors are common with living wills and POLST [+ AD] forms.”

In addition to writing down specific medical wishes & guidance in the advance care directive/POLST forms, consider shooting a 10-15 minute video with your loved one where they narrate their advance care directive, named agent and wishes orally. In the video, it is also useful to specify the physical and digital locations of the signed copies of the AD.

In most states, while the video is not legally admissible as a substitute for the written and signed AD, it is a useful supplement to the AD.

As of June 2017, only the state of Maryland allows an advance directive to be delivered exclusively via video. New Jersey allows video and audio tapes to supplement the AD. That said, Courts have been very receptive to the admission of video when written ADs are contested, as it offers incontrovertible evidence of your loved one’s wishes.  Furthermore, the UPMC survey found that during the course of care, healthcare workers and hospital staff welcome the clear, unambiguous medium of video.

Above all, creating a video that can be shared with friends, family, physicians and attorneys can be a powerful tool in conveying your loved one’s personal story, while reducing uncertainty when medical staff and Courts are called upon to intervene in her medical decisions.

You can use simple video creation tools such as your computer webcam or smartphone camera—nothing fancy is required. Just remember to save the video and share it with friends/family/attorneys once your loved one approves the video—this ensures that there are multiple copies available if a legal situation arises.

Where does my loved one start in providing guidance/instructions within the directive? 

One of the hardest parts of AD forms and ADs in general is that the official form questions are open-ended, so it’s not as easy as filling out a multiple choice form. The best starting point for completing your directive is to answer the questions that speak to your values and priorities as they pertain to medical decision-making. Examples of questions that you/your loved one should answer in as much detail as possible include: 

    • Is it important for you to perform daily life activities independently? 

Examples of activities of daily living include walking, household chores, getting dressed, brushing teeth, toileting, showering/bathing, preparing food, continence, etc.

  • How would you feel about your quality of life if you were unable to communicate or interact meaningfully with your loved ones?
  • How would you feel about being required to intake food through a feeding tube, or being spoon-fed meals, if you’re unable to perform these activities yourself?
  • If your heart stops, under what circumstances would you want to be resuscitated? Would you be comfortable being placed on a mechanical ventilator? *
  • What is your attitude towards the use of antibiotics to treat infections? *
  • If you are diagnosed with a terminal illness, what are your values regarding palliative care/pain management services?
  • What is your position on physician-assisted suicide (euthanasia)? Is there a point in your medical care where you would consider this as an option?
  • Are there any medications that you refuse to take?
  • In the event you need to be hospitalized, what are your preferred treatment facilities? What facilities would you prefer NOT to be treated at?
  • What is your position on hospice care?  Would you be comfortable spending your final days in hospice?

Answering questions like these help medical teams understand your values vs. explicitly suggesting a course for a specific medical decision. To the degree that they are able, medical teams are trained and inclined to respect the wishes and values of the patient.

If you’re still struggling to get started, check out the Conversation Project, a fantastic resource that features starter kits and stories from other visitors to help you build your personal story into your advance care directive.

Are physicians and clinical teams legally required to follow the advance care directive? 

According to the American Bar Association, the short answer is ‘no,’ physicians are not legally required to follow the directive. If physicians find aspects of the directive medically inappropriate, they can object to those aspects of the directive and follow protocols/procedures they find medically suitable to address your loved ones’ needs.

However, by law under the Patient Self-Determination Act, facilities such as hospitals and skilled nursing facilities (SNFs) must ask each patient upon admission if they have an AD on file, and thereafter record its existence in the patient’s medical record.

What’s the difference between Healthcare Agent/Proxy and Power of Attorney?

Giving someone Durable Power of Attorney over your affairs allows the person you appoint to act on your behalf for financial purposes should you become incapacitated.

A healthcare proxy is another name for the advance care directive. It is a legal document that gives your appointed agent the authority to make healthcare decisions for you if you are unable to communicate such decisions.

Your healthcare agent can be a different person than he/she who holds Durable Power of Attorney over your financial affairs. If you select two different individuals for these two very important roles, it is critical that they both share your values and that you have a joint conversation with them to ensure that your financial decision-making needs are consistent with your current and future medical decision-making needs. It would also make sense to involve your loved one’s primary care physician in the discussion early, as this can streamline care coordination when urgent and emergency situations arise. 

Make sure to contact an elder law attorney to ensure that your loved one executes all relevant documents to assign both roles of Power of Attorney and healthcare agent. 

Is the Advance Care Directive enough to guarantee my loved ones’ end-of-life wishes will be followed?

The reality is that the advance care directive is a guideline, but just like a living will, there are numerous circumstances in which the directive would not be followed. As described earlier, since the directives do not typically provide explicit medical instructions, a physician or EMS worker may deem the directive guidance to be in conflict with what is medically appropriate in a given situation.

In addition, it’s important that the advance care directive be easily stored and shareable, as it will not do much good if the healthcare agent and/or medical personnel cannot access it easily in urgent situations. For example, if the directive is locked away in a safe deposit box or a file drawer in your attic, it will have little value in times of need.

The NY Times featured a case where a patient specified in his advance care directive that he wanted “comfort care only, no heroics,” which is relatively generic but conveys an important layer of guidance for medical teams. Unfortunately, when he ended up in the hospital with an uncontrollable nosebleed and started vomiting blood, his directive was nowhere to be found until many weeks after he received a tracheostomy and other surgical procedures inconsistent with his directive.

There are numerous examples of where advance care directives proved inadequate during the course of care…unsigned documents, attorneys unable to fax files in time, or simply just leaving the physical copies of the directives at home when your loved one is on the way to the hospital and in need of urgent care. The list goes on an on. 

The misplacement of advance care directives and subsequent confusion and misalignment in care coordination are quite common occurrences, underscoring the value of creating shareable video featuring your loved one verbally communicating the directive. With such a video immediately accessible digitally, there will be little to no dispute over your loved ones’ wishes if they are speaking directly into the camera for everyone—including medical personnel—to see.

Take action today

At a minimum, it would be valuable to share the advance care directive with your loved ones’ primary care physician and all healthcare decision-makers involved in their day-to-day care (e.g. nurse practitioners, RNs, Licensed Clinical Social Workers, health plan care managers, etc). To go the extra mile, consider sharing with medical specialists treating your loved one, such as neurologists, pulmonologists, cardiologists, endocrinologists, nephrologists, psychiatrists and/or oncologists depending on chronic conditions that need to be managed. Ultimately, the more directive copies in circulation and immediately accessible, the more likely physicians are to follow your loved ones’ wishes. 

If your loved one is resistant to the idea of creating an advance care directive, encourage them by creating one for yourself as well. This is not about age per se, it’s about being smart and guiding your medical teams to make decisions that are in your best interest.   Remind them that we all could be in a vulnerable situation at any moment, via unforeseen circumstances such as a car accident or illness. If they feel like the AD applies to everyone vs. only them, they’ll be less likely to feel like you’re trying to compromise their independence. Practice what you preach and you’re likely to find a receptive audience.

As a reminder, in 2018, National Healthcare Decisions Day coincides with Tax Day. So if you’re not able to wait to file your taxes, don’t wait on creating your and your loved one's advance care directives.  The time you invest now will pay off when your loved one needs it most.