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The U-ARE Protocol: A Pragmatic Approach to Decisional Capacity Assessment for Clinical Research

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With increased longevity and growth in the number of older adults comes rising rates of individuals with cognitive impairment and dementia. The expansion of this population has important implications for research on aging and dementia syndromes,…

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Honoring patient preferences is a critical element in providing quality end-of-life care. To help physicians and other health care providers discuss and convey a patient's wishes regarding cardiopulmonary resuscitation (CPR) and other life-sustaining treatment, the Department of Health has approved form (DOH-5003), Medical Orders for Life-Sustaining Treatment (MOLST), which can be used statewide by health care practitioners and facilities. MOLST is intended for patients with serious health conditions who:

Want to avoid or receive any or all life-sustaining treatment;

Reside in a long-term care facility or require long-term care services; and/or

Might die within the next year.

Completion of the MOLST begins with a conversation or a series of conversations between the patient, the patient's health care agent or surrogate, and a qualified, trained health care professional that defines the patient's goals for care, reviews possible treatment options on the entire MOLST form, and ensures shared, informed medical decision-making. Although the conversation(s) about goals and treatment options may be initiated by any qualified and trained health care professional, a licensed physician, nurse practitioner, or physician assistant must always, at a minimum: (i) confer with the patient and/or the patient's health care agent or surrogate about the patient's diagnosis, prognosis, goals for care, treatment preferences, and consent by the appropriate decision-maker, and (ii) sign the orders derived from that discussion.

The MOLST form is one way of documenting a patient's treatment preferences concerning life-sustaining treatment - providers may choose to use other forms. However, under State law, the MOLST form is the only authorized form in New York State for documenting both nonhospital DNR and DNI orders. In addition, the form is beneficial to patients and providers as it provides specific medical orders and is recognized and used in a variety of health care settings.

In hospitals, hospice and nursing homes, the form may be used to issue any orders concerning life-sustaining treatment. In the community, the form may be used to issue nonhospital Do Not Resuscitate (DNR) and Do Not Intubate (DNI) orders, and in certain circumstances, orders concerning other life-sustaining treatment. The signed MOLST form should be transported with patients as they travel to different health care settings. The medical orders on the form need not be re-issued by the patient's new health care provider, but should be reviewed and may be revised by a physician, nurse practitioner, or physician assistant, when the patient transitions to a different setting and when the patient's preferences and/or medical conditions change.

In addition to the MOLST form itself, the Department has developed legal requirements checklists and frequently asked questions. These checklists are NOT intended for use with patients with developmental disabilities who lack medical decision-making capacity, or patients with mental illness in a mental hygiene facility. The checklists are intended to assist providers in satisfying the complex legal requirements associated with decisions concerning life-sustaining treatment for all other patients. They are guidance documents, and the use of these checklists is not mandatory. However, providers that do not use the checklists must use an alternative method for assuring that they adhere strictly to all legal requirements for completing the form, including requirements related to securing informed consent to the medical orders from the proper person, making the clinical judgments necessary to support orders withholding or withdrawing life sustaining treatment and, where applicable, securing ethics committee approval and witnesses to the consent.
To order the MOLST, please visit the DOH Order Form, complete the order form and mail it to the address listed at the top of the form or email it to bmcc@health.ny.gov
MOLST legal requirements checklists and general instructions for adult patients are:

The MOLST legal requirements checklist for minor patients is:

Frequently Asked Questions regarding MOLST:

A Note Regarding Use of MOLST for Persons With Mental Illness or Developmental Disabilities Who Lack Decision-Making Capacity:

The MOLST form has been approved by the Office of Mental Health (OMH) and the Office for People with Developmental Disabilities (OPWDD) for use as a nonhospital DNR/DNI form for persons with developmental disabilities or persons with mental illness, including persons who are incapable of making their own health care decisions or who have a guardian of the person appointed pursuant to Article 81 of the Mental Hygiene Law or Article 17-A of the Surrogate's Court Procedure Act. Please note: The OPWDD has approved a NEW checklist. This checklist MUST be attached to the MOLST form, in order for the form to be used for persons with developmental disabilities who are incapable of making their own health care decisions or who have a guardian of the person appointed pursuant to Article 81 of the Mental Hygiene Law or Article 17-A of the Surrogate's Court Procedure Act. The New OPWDD checklist can be found here. A checklist for persons with mental illness in mental hygiene facilities, who are incapable of making their own health care decisions or who have a guardian of the person appointed pursuant to Article 81 of the Mental Hygiene Law or Article 17-A of the Surrogate's Court Procedure Act, is under development.

The MOLST form should be printed on bright "pulsar" pink paper.

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Medical Orders for Life-Sustaining Treatment (MOLST)

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Honoring patient preferences is a critical element in providing quality end-of-life care. To help physicians and other health care providers discuss and convey a patient's wishes regarding cardiopulmonary resuscitation (CPR) and other life-sustaining treatment, the Department of Health has approved form (DOH-5003), Medical Orders for Life-Sustaining Treatment (MOLST), which can be used statewide by health care practitioners and facilities.

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NYS Bar Association Family Health Care Decisions Act Resource

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NYS Bar Association Family Health Care Decisions Act Resource

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Family Health Care Decisions Act (FHCDA) Resource Center - New York State Bar Association

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IHI Age-Friendly Health Systems Initiative

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IHI Age-Friendly Health Systems Initiative

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Principles of Bioethics | UW Department of Bioethics & Humanities

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Author: Thomas R. McCormick, D.Min., Senior Lecturer Emeritus, Dept. Bioethics and Humanities, School of Medicine, University of Washington

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Ethics and Advance Planning for Health Care Decisions

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Ethics and Advance Planning for Health Care Decisions

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Ethics and Advance Planning for Health Care Decisions

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Read about AAFP’s policy on ethics and advance planning for end-of-life care.

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Best Practices for Goals of Care Discussions

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Best Practices for Goals of Care Discussions

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The Goals-of-Care Conversation: A Best-Practice, Step-By-Step Approach

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Engaging patients in meaningful goals-of-care conversations is critical to providing patient-centered, individualized care.

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The PERSON Mneumonic for Establishing Goals of Care

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The PERSON Mneumonic for Establishing Goals of Care

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4 Ways Advance Care Planning Helps Healthcare Organizations Improve Population Health

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Fueled by pressure to improve both clinical and financial outcomes, population health management has become a burgeoning field in healthcare.

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During an emergency or at the end of life, you may face questions about their medical treatment and not be able answer them. You may assume your loved ones know what you would want, but that's not always true. In one study, people guessed nearly one out of three end-of-life decisions for their loved one incorrectly.

Research shows that you are more likely to get the care you want if you have conversations about your future medical treatment and put a plan in place. It may also help your loved ones grieve more easily and feel less burden, guilt, and depression.

What is advance care planning?

Advance care planning involves discussing and preparing for future decisions about your medical care if you become seriously ill or unable to communicate your wishes. Having meaningful conversations with your loved ones is the most important part of advance care planning. Many people also choose to put their preferences in writing by completing legal documents called advance directives.

Advance Care Planning: A Conversation Guide

Want to learn more about advance care planning? NIA's guide offers conversation tips, worksheets, and more.

What are advance directives?

Advance directives are legal documents that provide instructions for medical care and only go into effect if you cannot communicate your own wishes.

The two most common advance directives for health care are the living will and the durable power of attorney for health care.

Living will: A living will is a legal document that tells doctors how you want to be treated if you cannot make your own decisions about emergency treatment. In a living will, you can say which common medical treatments or care you would want, which ones you would want to avoid, and under which conditions each of your choices applies. Learn more about preparing a living will.

Durable power of attorney for health care: A durable power of attorney for health care is a legal document that names your health care proxy, a person who can make health care decisions for you if you are unable to communicate these yourself. Your proxy, also known as a representative, surrogate, or agent, should be familiar with your values and wishes. A proxy can be chosen in addition to or instead of a living will. Having a health care proxy helps you plan for situations that cannot be foreseen, such as a serious car accident or stroke. Learn more about choosing a health care proxy.

Think of your advance directives as living documents that you review at least once each year and update if a major life event occurs such as retirement, moving out of state, or a significant change in your health.

Who needs an advance care plan?

Advance care planning is not just for people who are very old or ill. At any age, a medical crisis could leave you unable to communicate your own health care decisions. Planning now for your future health care can help ensure you get the medical care you want and that someone you trust will be there to make decisions for you.

Advance care planning for people with dementia

Many people do not realize that Alzheimer's disease and related dementias are terminal conditions and ultimately result in death. People in the later stages of dementia often lose their ability to do the simplest tasks. If you have dementia, advance care planning can give you a sense of control over an uncertain future and enable you to participate directly in decision-making about your future care. If you are a loved one of someone with dementia, encourage these discussions as early as possible. In the later stages of dementia, you may wish to discuss decisions with other family members, your loved one's health care provider, or a trusted friend to feel more supported when deciding the types of care and treatments the person would want.

What happens if you do not have an advance directive?

If you do not have an advance directive and you are unable to make decisions on your own, the state laws where you live will determine who may make medical decisions on your behalf. This is typically your spouse, your parents if they are available, or your children if they are adults. If you are unmarried and have not named your partner as your proxy, it's possible they could be excluded from decision-making. If you have no family members, some states allow a close friend who is familiar with your values to help. Or they may assign a physician to represent your best interests. To find out the laws in your state, contact your state legal aid office or state bar association.

Will an advance directive guarantee your wishes are followed?

An advance directive is legally recognized but not legally binding. This means that your health care provider and proxy will do their best to respect your advance directives, but there may be circumstances 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. This is another key reason why having conversations about your preferences is so important. Talking with your loved ones ahead of time may help them better navigate unanticipated issues.

There is the possibility that a health care provider refuses to follow your advance directives. This might happen if the decision goes against:

The health care provider's conscience

The health care institution's policy

Accepted health care standards

In these situations, the health care provider must inform your health care proxy immediately and consider transferring your care to another provider.

Other advance care planning forms and orders

You might want to prepare documents to express your wishes about a single medical issue or something else not already covered in your advance directives, such as an emergency. For these types of situations, you can talk with a doctor about establishing the following orders:

Do not resuscitate (DNR) order: A DNR becomes part of your medical chart to inform medical staff in a hospital or nursing facility that you do not want CPR or other life-support measures to be attempted if your heartbeat and breathing stop. Sometimes this document is referred to as a do not attempt resuscitation (DNR) order or an allow natural death (AND) order. Even though a living will might state that CPR is not wanted, it is helpful to have a DNR order as part of your medical file if you go to a hospital. Posting a DNR next to your hospital bed might avoid confusion in an emergency. Without a DNR order, medical staff will attempt every effort to restore your breathing and the normal rhythm of your heart.

Do not intubate (DNI) order: A similar document, a DNI informs medical staff in a hospital or nursing facility that you do not want to be on a ventilator.

Do not hospitalize (DNH) order: A DNH indicates to long-term care providers, such as nursing home staff, that you prefer not to be sent to a hospital for treatment at the end of life.

Out-of-hospital DNR order: An out-of-hospital DNR alerts emergency medical personnel to your wishes regarding measures to restore your heartbeat or breathing if you are not in a hospital.

Physician orders for life-sustaining treatment (POLST) and medical orders for life-sustaining treatment (MOLST) forms:These forms provide guidance about your medical care that health care professionals can act on immediately in an emergency. They serve as a medical order in addition to your advance directive. Typically, you create a POLST or MOLST when you are near the end of life or critically ill and understand the specific decisions that might need to be made on your behalf. These forms may also be called portable medical orders or physician orders for scope of treatment (POST). Check with your state department of health to find out if these forms are available where you live.

You may also want to document your wishes about organ and tissue donation and brain donation. As well, learning about care options such as palliative care and hospice care can help you plan ahead.

How can you get started with advance care planning?

Share this infographic to spread advance care planning tips for getting your affairs in order.

To get started with advance care planning, consider the following steps:

Reflect on your values and wishes. This can help you think through what matters most at the end of life and guide your decisions about future care and medical treatment.

Talk with your doctor about advance directives. Advance care planning is covered by Medicare as part of your annual wellness visit. If you have private health insurance, check with your insurance provider. Talking to a health care provider can help you learn about your current health and the kinds of decisions that are likely to come up. For example, you might ask about the decisions you may face if your high blood pressure leads to a stroke.

Choose someone you trust to make medical decisions for you. Whether it's a family member, a loved one, or your lawyer, it's important to choose someone you trust as your health care proxy. Once you've decided, discuss your values and preferences with them. If you're not ready to discuss specific treatments or care decisions yet, try talking about your general preferences. You can also try other ways to share your wishes, such as writing a letter or watching a video on the topic together.

Complete your advance directive forms. To make your care and treatment decisions official, you can complete a living will. Similarly, once you decide on your health care proxy, you can make it official by completing a durable power of attorney for health care.

Share your forms with your health care proxy, doctors, and loved ones. After you've completed your advance directives, make copies and store them in a safe place. Give copies to your health care proxy, health care providers, and lawyer. Some states have registries that can store your advance directive for quick access by health care providers and your proxy.

Keep the conversation going. Continue to talk about your wishes and update your forms at least once each year or after major life changes. If you update your forms, file and keep your previous versions. Note the date the older copy was replaced by a new one. If you use a registry, make sure the latest version is on record.

Everyone approaches the process differently. Remember to be flexible and take it one step at a time. Start small. For example, try simply talking with your loved ones about what you appreciate and enjoy most about life. Your values, treatment preferences, and even the people you involve in your plan may change over time. The most important part is to start the conversation.

How to find advance directive forms

You can establish your advance directives for little or no cost. Many states have their own forms that you can access and complete for free. Here are some ways you might find free advance directive forms in your state:

Some people spend a lot of time in more than one state. If that's your situation, consider preparing advance directives using the form for each state, and keep a copy in each place, too.

Do you need a lawyer to create advance directives?

Not necessarily. A lawyer can help but is not required to create your advance directives. However, if you have a lawyer, you should give them a copy of your advance directive. If you need help with planning, contact your local Area Agency on Aging. Other possible sources of legal assistance and referral include state legal aid offices, state bar associations, and local nonprofit agencies, foundations, and social service agencies.

There are also organizations that enable you to create, download, and print your forms online, but they may charge fees. Before you pay, remember there are several ways to get your forms for free. Some free online resources include:

PREPARE for Your Care: An interactive online program that was funded in part by NIA. It is available in English and Spanish.

The Conversation Project: A series of online conversation guides and advance care documents available in English, Spanish, and Chinese. The Conversation Project is a public engagement initiative led by the Institute for Healthcare Improvement.

If you use forms from a website, check to make sure they are legally recognized in your state. You should also make sure the website is secure and will protect your personal information. Read the website's privacy policy and check that the website link begins with "https" (make sure it has an "s") and that it has a small lock icon next to its web address.

Some people also choose to carry a card in their wallet indicating they have an advance directive and where it is kept. Below is an example from the American Hospital Association (PDF, 40KB).

You may also be interested in

For more information about advance directives

This content is provided by the NIH National Institute on Aging (NIA). NIA scientists and other experts review this content to ensure it is accurate and up to date.

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Advance Care Planning: A Conversation Guide

Want to learn more about advance care planning? NIA's guide offers conversation tips, worksheets, and more.

Share this infographic to spread advance care planning tips for getting your affairs in order.

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Advance Care Planning: Advance Directives for Health Care

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What is an advance directive? How do I set one up? Learn how to decide what health care you would want to receive if you were unable to speak for yourself.

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Abstract

We describe a protocol for disclosing unfavorable information-"breaking bad news"-to cancer patients about their illness. Straightforward and practical, the protocol meets the requirements defined by published research on this topic. The protocol (SPIKES) consists of six steps. The goal is to enable the clinician to fulfill the four most important objectives of the interview disclosing bad news: gathering information from the patient, transmitting the medical information, providing support to the patient, and eliciting the patient's collaboration in developing a strategy or treatment plan for the future. Oncologists, oncology trainees, and medical students who have been taught the protocol have reported increased confidence in their ability to disclose unfavorable medical information to patients. Directions for continuing assessment of the protocol are suggested.

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national center for biotechnology information

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SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer - PubMed

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We describe a protocol for disclosing unfavorable information-"breaking bad news"-to cancer patients about their illness. Straightforward and practical, the protocol meets the requirements defined by published research on this topic. The protocol (SPIKES) consists of six steps. The goal is to enable ...

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Capacity Determination in Advance Care Planning

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Capacity Determination in Advance Care Planning

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Am Fam Physician. 2018;98(1):40-46

Author disclosure: No relevant financial affiliations.

Article Sections

Medical decision-making capacity is the ability of a patient to understand the benefits and risks of, and the alternatives to, a proposed treatment or intervention (including no treatment). Capacity is the basis of informed consent. Patients have medical decision-making capacity if they can demonstrate understanding of the situation, appreciation of the consequences of their decision, and reasoning in their thought process, and if they can communicate their wishes. Capacity is assessed intuitively at every medical encounter and is usually readily apparent. However, a more formal capacity evaluation should be considered if there is reason to question a patient's decision-making abilities. Such reasons include an acute change in mental status, refusal of a clearly beneficial recommended treatment, risk factors for impaired decision making, or readily agreeing to an invasive or risky procedure without adequately considering the risks and benefits. Any physician can evaluate capacity, and a structured approach is best. Several formal assessment tools are available to help with the capacity evaluation. Consultation with a psychiatrist may be helpful in some cases, but the final determination on capacity is made by the treating physician. If a patient is found not to have capacity, a surrogate decision maker should be identified and consulted. If the patient is unable to give consent and identifying a surrogate decision maker will result in a delay that might increase the risk of death or serious harm, physicians can provide emergency care without formal consent.

Informed consent involves providing patients with accurate and adequate information about the risks, benefits, and alternatives of a treatment in a manner that is free from coercion. It also requires that patients have medical decision-making capacity. Medical decision-making capacity has four key elements. Patients must be able to (1) demonstrate understanding of the benefits and risks of, and the alternatives to, a proposed treatment or intervention (including no treatment); (2) demonstrate appreciation of those benefits, risks, and alternatives; (3) show reasoning in making a decision; and (4) communicate their choice.1, 2

Capacity differs from competence. Although the terms are often used interchangeably, competence is a legal term that is determined by the court system, whereas capacity is a medical term that is determined by the treating physician. According to their strict definitions, lack of competence refers to global decision-making impairment (e.g., finances, property, wills), whereas lack of capacity refers to the inability to make decisions about proposed medical treatments and other aspects of care. Capacity can vary with circumstance; for example, a patient can have the capacity to make small, straightforward decisions such as consenting to take a new medication, but may lack the capacity to consent to a high-risk abdominal surgery.3

Generally, a patient's capacity is readily apparent, and physicians intuitively assess capacity at every medical visit. Because the four elements of capacity (understanding, appreciation, reasoning, and communication) are built into everyday dialogue and interactions, it can be assumed that patients have the capacity to make medical decisions if their conversation demonstrates basic logic. However, a patient's capacity may come into question if the dialogue does not proceed in a logical fashion, if there are abrupt changes in the patient's mental status, or if the patient refuses an obviously beneficial treatment, has a risk factor for impaired decision making (Table 1 3- 5), or readily agrees to an invasive or risky procedure without discussing or considering the risks and benefits.3 If the physician has doubts about a patient's ability to make a decision, a more formal evaluation of capacity should be undertaken. The results can either give the physician confidence to adhere to the patient's wishes or, if a lack of capacity is indicated, to take steps to restrict the patient's autonomy in order to prevent unintended and irreparable harm.

Physicians tend to underdiagnose lack of capacity in their patients. An analysis of eight studies showed that physicians could identify only 42% of patients with incapacity as determined by a formal evaluation.2 It is not clear whether underdiagnosis is the result of physicians' inability to recognize incapacity or their reluctance to make the diagnosis.

Knowing the prevalence of incapacity in various populations may raise awareness by helping physicians determine the pretest probability. In populations with a higher pretest probability, physicians should be more alert for incapacity and more readily consider performing a capacity evaluation. The prevalence of incapacity in healthy older adults is estimated at 2.8%.6 However, the prevalence is higher in other patient populations: inpatients on a medical ward have an incapacity prevalence of 26%, and those with Alzheimer disease (considering those at all stages) have a prevalence of 54%.6 The highest rate (68%) is among persons with learning disabilities.6

The causes of incapacity are numerous, and the thought of restricting a patient's autonomy can be intimidating. A stepwise approach to evaluation is recommended.3, 7, 8

The first step is to ensure that there are no communication barriers impairing the patient's ability to understand information and communicate with the physician. These might include physical barriers, such as hearing and vision impairments, dysarthria, or dysphagia.9 Language barriers may also be present, including the use of medical jargon that can confuse patients and cause "pseudo-incapacity." 2 Jargon and complicated explanations can also cause confusion, but further inquiry and rewording can improve their understanding and allow them to make informed decisions.

If there are no communication barriers, the next step is to evaluate for reversible causes of incapacity, such as infection, medication adverse effects, illicit drug use, hypoxia, metabolic derangements, acute neurologic and psychiatric disorders, delirium, and critical illness. The third step is to consider the patient's values and culture; these can weigh heavily on his or her decision and may cause some physicians to question capacity. A Jehovah's Witness who refuses a blood transfusion is a classic example of a value-based decision that should be honored as long as the patient demonstrates the four elements of capacity.

If no communication barriers or reversible causes of incapacity are identified, the next step is a capacity assessment with a quick and informal directed clinical interview. This process can help determine whether the patient demonstrates the four elements of capacity. Table 2 provides suggested questions to use in evaluating these four elements.3 When evaluating a patient's responses to these questions, keep in mind that patients do not have to make the "right" choice; they need only to demonstrate a rational examination of pertinent information in arriving at their decision.10 A high burden of proof is needed to restrict autonomy. Therefore, if the evaluation indicates that the patient's understanding and rationale are adequate, that generally establishes capacity, even though someone else in the patient's situation might make a different decision.11

If the directed interview does not clearly demonstrate capacity, or if additional information is required, the use of a formal assessment tool is the next step. Several tools are available to evaluate capacity, and each has a unique approach. Common assessment tools include the Aid to Capacity Evaluation (ACE; Figure 1 3), the Hopkins Competency Assessment Test (HCAT; available at http://criminal-justice.iresearchnet.com/forensic-psychology/hopkins-competency-assessment-test-hcat), the Understanding Treatment Disclosure, and the MacArthur Competence Assessment Tool for Treatment.12

The ACE is a formal, directed, clinical interview that objectively assesses the four elements of capacity. It is widely used and considered the best available online tool. It comes with instructions and is specific to each medical decision. The ACE was validated in a large study that showed that a positive evaluation had a likelihood ratio of 8.5 for predicting decision-making incapacity.2, 8

The HCAT is also quick and effective, but it evaluates for generalized incapacity rather than capacity to make specific decisions.13 The HCAT can be helpful if there is concern about the need to transfer decision-making authority to a surrogate, but it is not as helpful if the goal is evaluating for capacity in a specific clinical scenario.

If uncertainty about capacity remains after an evaluation using the ACE, HCAT, or other instrument, consultation with another clinician can be considered. Consultation with a psychiatrist can be particularly helpful and is prudent if the patient has a history of schizophrenia or other psychiatric or delusional disorder. However, the final determination of the patient's capacity should be made by the treating physician.

Assessing cognition can be useful but is not required to determine capacity. The Mini-Mental State Examination (available at https://www.uml.edu/docs/Mini%20Mental%20State%20Exam_tcm18-169319.pdf) and the Montreal Cognitive Assessment (available at http://www.mocatest.org) are two tools that are commonly used to evaluate cognition. They can be helpful in evaluating capacity when patients score at the extremes of the scoring scale.14 For example, patients who score less than 20 on the 30-point Mini-Mental State Examination are 6.3 times more likely to have incapacity, whereas patients who score 25 or higher are unlikely to have incapacity (likelihood ratio = 0.14).2 Similarly, the 30-point Montreal Cognitive Assessment has been shown to predict incapacity. In one study of 90 patients with Parkinson disease, a score of less than 22 had a 94% sensitivity and 90% specificity for identifying incapacity.15

Determining that a patient lacks capacity and restricting his or her autonomy require clear and convincing evidence that the patient's decision will cause unintended and irreparable harm. If there is uncertainty after conducting a full capacity evaluation, the final judgment should err on the patient's side.4, 16, 17 Each state has its own definition of capacity. Although laws are similar among states and incorporate the four elements of capacity, there may be slight differences. Thus, if an evaluation leads to a diagnosis of incapacity and legal proceedings are involved, consultation with a medical attorney is prudent.

Surrogate Decision Makers

If a physician determines that a patient does not have the capacity to make a treatment decision, consent for treatment must be obtained from other sources. If the patient has an advance directive applicable to the clinical situation, it should be used to guide decisions. If not, the physician should determine whether the patient has designated a medical power of attorney. If there is no valid medical power of attorney, the closest relative usually becomes the surrogate. The priority of relatives varies by state, but the typical order is spouse, adult children, parents, siblings, and other relatives.

Up to 16% of patients in intensive care units do not have a known relative or medical power of attorney, so a court-appointed health fiduciary is an option.18 If the patient is not able to give consent and delaying care to identify a surrogate will increase the risk of death or serious harm, the physician can provide emergency care without formal consent under the assumption that a reasonable person would have consented to the treatment.4

When performing a capacity assessment, it is important to document the evaluation in the medical record. Exact responses to the questions are helpful, along with a brief summary of the interview. If a formal assessment tool is used, it should be included in the medical record. Ultimately, the clinician must document the rationale used in determining the patient's capacity.3

An 88-year-old woman who lives alone presents to the emergency department after a fall. Her sodium level is 120 mEq per L (120 mmol per L), and she is admitted to the hospital. Her outpatient records show that she has not refilled her heart failure medications in more than six months. On day 3 of hospitalization, she states that she is feeling better and wants to go home. Physical examination reveals global muscle weakness and inability to get out of bed without assistance. The inpatient team recommends transfer to a rehabilitation facility, but the patient refuses.

A 56-year-old man with schizophrenia is brought to the emergency department by his brother. He has a large, non-healing ulcer on his left lower leg that is obviously infected. His brother reports that the patient has diabetes mellitus and stopped taking his medications six months ago. On examination, the patient demonstrates disorganized thinking and describes auditory hallucinations. He refuses treatment and says the government is trying to kill him.

Case 1 is an example of a patient who may understand her situation and treatment options, but may not appreciate the consequences of her decision. If she is discharged home, where she lives by herself, she will not be able to perform activities of daily living. She does not realize that this will lead to harm. From this informal assessment, she seems to lack appropriate decision-making capacity. A formal assessment using the ACE will likely confirm this conclusion. If she continues to insist on hospital discharge, steps can be taken to involve family members or other surrogate decision makers to arrive at a decision that will be acceptable to the patient and is appropriate for her safety.

Case 2 is an example of poor reasoning due to psychiatric illness. The patient cannot synthesize complex data to make an informed decision; therefore, he lacks decision-making capacity. Psychiatric consultation should be obtained and appropriate treatment instituted.

This article updates a previous article on this topic by Tunzi.3

Data Sources: A literature search was performed in PubMed using the terms capacity and evaluating capacity. We also searched the National Guideline Clearinghouse and the Cochrane database. Search date: January 2017.

The opinions or assertions contained herein are the private views of the authors and are not to be construed as official or as reflecting the views of the Department of Defense.

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Evaluating Medical Decision-Making Capacity in Practice

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Medical decision-making capacity is the ability of a patient to understand the benefits and risks of, and the alternatives to, a proposed treatment or intervention (including no treatment). Capacity is the basis of informed consent.

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eMOLST is a secure web-based application that allows enrolled users to complete the eMOLST form, MOLST Chart Documentation Form (CDF) and mandated OPWDD Checklist for persons with developmental disabilities who lack capacity. CDFs document the MOLST discussion including the patient’s values, beliefs and goals for care, the ethical framework for medical decisions regarding withholding and withdrawing life-sustaining treatment, and legal requirements. Forms are created as pdf documents that can be printed for the patient and paper-based medical records, stored or linked to from an EMR, and become part of the NYS eMOLST registry.

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Optimising Digital Advance Care Planning

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Optimising Digital Advance Care Planning

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Optimising digital advance care planning implementation in palliative and end-of-life care: a multi-phase mixed-methods national research programme and recommendations - BMC Medicine

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Background Digital advance care planning (DACP) is increasingly used globally for patients with life-limiting conditions to support real-time documentation and the sharing of preferences for care. There has been low engagement with DACP systems, with patients often having information about their care preferences documented late in their illness trajectory or not at all. To optimise implementation, the Optimal Care research programme sought to understand DACP system use from multiple perspectives to guide their development and evaluation. Methods Between 2020 and 2023, our mixed-methods research programme sought an understanding of DACP implementation from multiple perspectives, including (i) national online survey of end-of-life care commissioning leads in England; (ii) online survey of community and hospital-based health and care professionals in two geographical regions; (iii) semi-structured interviews with a sample of survey respondents; (iv) focus groups and interviews with patients with life-limiting illness and their carers and (v) regional and national Theory of Change workshops. Findings were organised by five phases of a conceptual model of DACP generated during the programme and further categorised using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework. Results A total of 788 stakeholders participated. Twenty evidence-based recommendations were distilled from data collected across the research programme to guide the implementation of DACP in routine care. Considerations are provided across the five phases of DACP implementation (system design, recognition of clinical need for DACP, documentation processes, health and care professional engagement with DACP and DACP evaluation). Recommendations prioritise a focus on end-user needs and experiences, alongside highlighting the requisite need for DACP systems to support information exchange across settings involved in the care of people with life-limiting conditions. Conclusions As currently designed and implemented, DACP systems may be falling short of their potential and are not working as intended for patients, carers and health and care professionals. The application of the recommendations should ensure consideration of the wider ecosystem in which DACP is being implemented, prioritising end-user experiences. Future research should prioritise developing approaches that target health and care professional DACP system engagement, alongside developing and evaluating patient and carer access to DACP systems.

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Strategies to Increase the Uptake of Advance Care Planning

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Strategies to Increase the Uptake of Advance Care Planning

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Advance care planning (ACP) allows patients to express their goals and preferences for future medical and serious illness care. Advance directives are an essential component of ACP, as they consist of the legal documents - a living will, a medical power of attorney, and Physician Orders for Life Sustaining Treatment (POLST) - that enable a patient's wishes to be carried out if they are unable to communicate.

Despite all the evidence that proves ACP is beneficial to healthcare systems, healthcare professionals, patients, and their families, a 2017 study revealed that 63 percent of American adults had not completed an advance directive (AD).

ACP has taken on greater priority due to COVID-19. Early in the pandemic, there was a nearly five-fold increase in online ACP and AD completion. However, more recent data from the National Poll on Healthy Aging indicates that even though 59 percent of older adults have had ACP discussions, half of them have not completed any legal documentation.

With the increased awareness of ACP, it is more important than ever for healthcare providers and organizations to take steps to increase the adoption of this vital communication process. Here are three simple strategies to bolster support for ACP.

Implement a process to identify patients in need of ACP

Clinicians are busy. Time constraints and competing priorities often get in the way of ACP discussions. Every healthcare organization's ACP initiative should include a practical process to identify patients who require ACP. This process may include:

Routinely highlighting patients in need of an ACP intervention during daily multidisciplinary rounds

Flagging patients in the EHR who need ACP using an AI-based algorithm or predictive model

Designate ACP champions to promote and support adoption of the process

Use a quality improvement method, such as Plan-Do-Study-Act (PDSA), to test the new process, facilitate implementation of the change, and create sustainable improvement

Provide access to video patient decision aids

Video decisions aids not only help overcome common barriers to shared decision making, they also offer a standardized and cost-effective means to address the communication needs around ACP. The use of video decision aids has been shown to increase the number of ACP conversations among patients with serious illness, lead to better alignment between preference for comfort-focused care and ADs, promote more informed medical decision making, and improve the rate of completed documentation preferences for medical care.

In this case study, a high acuity, multidisciplinary outpatient clinic providing care for patients diagnosed with heart failure, implemented ACP video decision aids and increased the completion of ADs from 15 percent to 54 percent.

For maximal effectiveness, visual decision aids should be chosen carefully to ensure they are high-quality, adhere to plain language principles, and are culturally relevant to the patient and their family.

Educate clinicians on how to effectively conduct ACP discussions

For most clinicians, sharing a poor prognosis and initiating a conversation about serious illness care is difficult. Given that physicians receive little to no training in medical school about how to carry out these conversations in a meaningful way, it's little wonder they struggle with broaching the topic with patients and their families.

Education and training can instill the confidence and necessary communication skills in healthcare providers to engage in timely ACP conversations. Training opportunities could include:

Holding expert-led communication skills workshops or webinars to help clinicians develop the communication skills for effective goals-of-care conversations

Offering access to video-based training modules that apply to specific clinician and patient scenarios, such as these from ACP Decisions

Providing a framework to guide clinicians during their conversations, such as SUPER or REMAP

Helping providers facilitate ACP discussions by giving them tools to integrate patient decision aids into clinical practice and offering "lunch and learn" educational sessions to encourage the use of these tools

Is your healthcare organization interested in implementing or improving an ACP initiative? Check out these real-world case studies to see how other organizations have benefitted from using ACP Decision's Video Library with their patients or contact us today to learn how to get started!

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3 Strategies to Increase the Uptake of Advance Care Planning

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Advance care planning (ACP) allows patients to express their goals and preferences for future medical and serious illness care.

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When Emotions Run High, Here’s How to Respond

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Medical training is full of mneumonic devices—quick techniques that help us remember what to do.

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An Instrument Heard Round the World - Penn Memory Center

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Drs. Jason Karlawish and James Lai set out to develop a tool to measure capacity of everyday decision-making.

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Toolkit for Primary Care Capacity Assessment

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Toolkit for Primary Care Capacity Assessment

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NYS DOH Center for Hospice and Palliave Care

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NYS DOH Center for Hospice and Palliave Care

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Hospice and Palliative Care Associate of New York State

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Hospice and Palliative Care Associate of New York State

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Hospice and Palliative Care Association of New York State (HPCANYS)

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VitalTalk - Your Partner in Patient Communication

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Center to Advance Palliative Care (CAPC)

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Center to Advance Palliative Care (CAPC)

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Online training courses for clinicians with continuing education credits in pain management, symptom management, communication about patient goals and values, and support for family caregivers.

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"Five Wishes enables me to know my patients more deeply. If I work with this document and I go through all five questions, I'm going to know this person so much better. And that really helps feed me as a physician because many of us went into this to be in meaningful relationship with our patients."
-Gregg Vandekieft, MD, Palliative Care, Providence Hospital, Olympia, WA.

"When I discovered Five Wishes and gave it my full attention, I knew that it was something I would have to do with Dad. We sat in the hospital and went through it. It was witnessed that very night...It became instrumental in my insisting that Dad's wishes be honored on that last evening. Because I was able to help Dad go in the way he chose, there is a joy that fills me. I am grateful."
-Yvonne Caputo, Pennsburg, PA.

"The Five Wishes at Work employee packets were definitely a hit. Personally, my immediate family has had three family meetings. The Five Wishes booklet has been an effective guide to very difficult, yet pivotal conversations."
-Carlyn Paton, BS, MA, Ed.D, Education & Training Manager - COLA

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"Five Wishes enables me to know my patients more deeply. If I work with this document and I go through all five questions, I'm going to know this person so much better. And that really helps feed me as a physician because many of us went into this to be in meaningful relationship with our patients."