Capacity Determination and Advance Care Planning

Shared medical decision-making requires a balance between 2 fundamental principles:

• The clinician’s obligation to advocate for a patient’s health
• The human right of self-determination

We protect self-determination by learning how to qualify our patient’s agency and asking them to preserve their preferences orally or in writing for when their agency will be absent, either temporarily or permanently, and allow them to transfer such authority to a person of their choosing. In common parlance, we call this “capacity determination” and “advance care planning”.

How and When to Determine Capacity for Medical Decision-Making

Whereas capacity is presumed, concern that a patient lacks capacity warrants exploration. When a patient falls short of capacity, the provider must turn to a surrogate to represent the preferences of the patient. Determination of capacity commonly occurs in the setting of a pending informed consent process; however, capacity is relevant in almost every clinical encounter.¹ Even in the case of general consent for treatment, the validity of the permission provided to examine and treat a patient rests on the patient’s ability to understand the implications of the agreement. Therefore, every neurologist should know how to perform such a determination and the conditions for which they might need to pursue expert consultation. In this section, we review the capacity criteria and how they might vary for those with neurologic disease.

First, a note on nomenclature (see Box).

The first step in a capacity determination is assessing the patient’s understanding of their disease state and the relevant risks and benefits associated with proposed treatments (Fig. 1). For most patients, this can be part of a routine clinical encounter, without additional formal testing needed. Because some diseases are more complex than others, and treatments likewise vary in complexity, this initial step is often the most challenging. The decision may influence the extent of how thorough a conversation and related documentation might need to be. Such an understanding is predicated on sufficient alertness, attention, and rational thought to perform the relevant cognitive task.² Because most patients will not have in-depth medical knowledge, these cognitive capabilities might first be explored regarding subject matter with which the patient may already have familiarity.

The patient should be able to articulate their thought process when weighing their choices to ensure that it is based on a rational rubric rather than a delusional construct due to underlying neuropsychiatric pathology. The clinician does not have to agree with the patient’s value systems or logical process but should be able to recognize that such a process exists and that the patient’s responses are not arbitrary.

Using open-ended questions, asking the patient to express the pending decision in their own words, repeating the conversation at different time points, and referencing previous decisions the patient may have made can help substantiate capacity. Including family and friends in discussions may give the neurologist a better understanding of the patient’s culture and social context and help differentiate a less familiar belief system from that of an irrational or impaired patient.

Decision-making capacity is particularly complex in patients with neurologic disease, because they may have deficits in specific domains that are not self-evident or only limit decision-making in certain circumstances. For example, a patient with mild cognitive impairment may require repeated reorientation to a conversation but still hold attention long enough to understand the relevant biologic facts and risk–benefit analysis. Such a person may also be oriented to the correct month, but not the day of the week, and still understand the implications of their medical decisions.³

In cases where a neurologist is uncertain as to a patient’s decision-making capacity, they might want to reconsider their clinical evaluation and incorporate what they have determined from available imagining and laboratory findings. If still uncertain, they might consider consultation with other experts. For example, neurocognitive testing can delineate which domains are affected and to what extent.⁴

Patients with psychiatric disorders often benefit from a capacity determination by a mental health professional. Collaborating with a clinical ethicist or palliative care physician may lead to a clearer understanding as to the patient’s capacity. Although a standardized form or template can offer guidance, the clinician must remember that capacity for medical decision-making is inherently a judgment that requires training and skill development.

Advance Care Planning

Avanced care planning in health care is prospective preparing for life-changing events, such as end-of-life decisions and unanticipated medical emergencies. When a patient loses (even temporarily) their capacity for medical decision-making, we turn to advance care planning to determine how the patient would want us to proceed. Whereas investing in such plans is commonly accepted as a necessity, fewer than one-third of patients have completed advance care planning documents.⁵ Most physicians will encounter a situation where they can predict a change in health is in the near future for their patient and should consider how to guide an informed discussion with the patient. This ensures the patient and physician are aligned with care and treatment goals in a variety of settings and ensures the patient’s wishes are followed. Oral directions are helpful but difficult to transpose to a different clinical context. The best strategy to ensure these goals are achieved is to complete advance care planning documents that convey a patient’s decision ahead of time, both for specific clinical scenarios as well as who the patient would chose to speak on their behalf.

The remainder of this article discusses types of advance care planning documents, how the physician can assist the patient in designing well-crafted advance care planning documents, and the portability of those advance care planning documents. Each state has its own provisions and nomenclature, and therefore a discussion of such documents requires choosing a particular state as an anchor. The authors of this article are from Texas and use Texas law as the basis for this discussion. Readers are encouraged to consult with legal counsel when considering creation of such documents in their jurisdiction. A discussion of the main types of advance care planning documents, including their goals, applicable setting, and effect of each type, follows.

Directive to Physicians and Family or Surrogates (“Living Will”)

A living will is “a written instruction to administer, withhold, or withdraw life-sustaining treatment in the event of a terminal or irreversible condition.”⁶ A living will becomes effective only when a physician documents within the patient’s record that the patient has a terminal or irreversible condition and that there is no reasonable chance of recovery.⁷ The living will provides clear instruction regarding whether the patient desires the provision of life-sustaining treatment such as ventilators, dialysis, artificial nutrition or hydration, or pain management.⁸ It may also (but is not required to, in contrast to a durable power of attorney for health care) identify who the patient has designated as their surrogate to make end-of-life care decisions in the event the living will becomes effective. Thus, a living will plans for the foreseeable future in which a catastrophic diagnosable condition, injury, or illness may leave a patient unable to communicate their wishes for care and treatment.

Durable Power of Attorney for Health Care (“Medical Power of Attorney”)

Whereas a living will is a plan limited to end-of-life care, a medical power of attorney (MPOA) covers a much broader range of treatment decisions. An MPOA designates an individual to make medical treatment decisions on behalf of the patient when the patient no longer has capacity to make an informed decision.⁹ An MPOA becomes effective only when a physician documents within the patient’s medical record that the physician, based upon reasonable medical judgement, believes the patient lacks capacity or an ability to understand the nature and consequences of a treatment decision, including its benefits and harms, or reasonable alternatives to a proposed treatment decision.¹⁰ An MPOA plans for the unforeseeable and possibly transient future in which the patient is unable to communicate their wishes for care and treatment.

Do Not (Attempt) Resuscitate Orders

All states will have some variant of an out of hospital do not resuscitate order (OOH-DNR). In Texas, an OOH-DNR is a written instruction to health care personnel to forgo certain resuscitative treatments to permit the patient to have a natural death in outpatient or home settings.¹¹ An OOH-DNR does not apply to a patient who has been admitted or is receiving inpatient care. These advance directive planning documents are signed by the attending physician and the patient and are effective upon execution. Some states, like Texas, also have health care facility do not resuscitate orders.¹² A health care facility do not resuscitate order is a written instruction to health care personnel to forgo certain resuscitative treatment to permit the patient to have a natural death in an inpatient setting.¹³

Guiding a Patient in Creating an Advance Directive

After diagnosis of a progressive neurologic disease, a discussion of prognosis and establishing future expectations naturally follows. A patient’s and their family’s readiness to discuss prognosis should be assessed and may require discussions regarding advance care planning. Supporting a healthy coping process is essential and will help build the therapeutic relationship needed to allow for definitive conversations. A neurologist cannot offer legal advice but they do not necessarily need to defer the entire process to an attorney. The physician could begin a discussion with a description of the types and purpose of each advance care planning document and how each advance care planning document will fit the patient’s needs. For instance, a patient who has been recently diagnosed with mild cognitive impairment may need to complete an MPOA for the periods when they lack capacity, whereas a patient with advanced motor neuron disease might choose to complete a living will, as their end-of-life process and need for mechanical ventilation are predictable. As the patient progresses through the disease process, the neurologist should return to the advance directive to ensure that it still represents the patient’s current preferences.

It may also be helpful to counsel the patient about choosing the right surrogate for when they lose capacity. The patient should think about who would honor their wishes as opposed to doing what they themselves would do or succumbing to pressure from other family members. The patient should reflect upon their personal values, including any religious and moral beliefs, as well as what hardships or burdens the patient is willing to accept, and balance those against the benefit of a treatment decision. The physician should counsel the patient to express these reflections to the individual whom they believe will make informed decisions in line with the patient’s values and preferences. Upon completion of the appropriate advance care planning documents, the patient should give the identified designated surrogate as well as the physician a copy of the advance care planning documents.

Other Resources

Most states and health care institutions will have additional resources available through the state’s website. These resources are designed to encourage patients to execute advance care planning documents without the cost and burden of meeting with an attorney. However, legal counsel, especially those experienced in wills and probate, may also recommend complementary advance care planning documents, such as a will, trust, statutory durable power of attorney, and other advance care planning documents.

Portability of Advance Care Planning Documents

Just as people travel for pleasure, many patients travel for health care. Most states have provisions that, if an advance care planning document was executed in compliance with the state law in which it was executed, the advance care planning document will be effective in another state.

Conclusions

Assessment of decision-making capacity and completion of advance care planning are topics that should be familiar to every practicing neurologist. Neurologists should have sufficient knowledge of these topics to ensure they do not miss an opportunity to guide a patient through the disease process or offer interventions without the appropriate consent. Documents and informed discussions can help to ensure that, for both foreseeable and unforeseeable events, the patient’s care is likely to be carried out in a manner consistent with their wishes. It is vitally important to have those discussions early and often with patients and their identified surrogate. This ensures that during the often-complex delivery of care, decision-making for an incapacitated patient does not itself become an excessive burden during the moments of a medical crisis.