Talk to Your Patient Advocate!

A durable power of attorney for health care, sometimes called an advance directive, is an important instrument that assures patient autonomy and ensures that a patient’s wishes with regard to their health care decisions and treatment will be followed. Overlooked, and sometimes misunderstood, is the right of autonomy of medical providers not to provide treatments either that they consider, in their medical judgment, to be futile, or for which the perceived harm to the patient outweighs the benefits. Between these two rights of autonomy stands the designated patient advocate (for ease of reference, the advocate) who may fully understand neither their responsibilities to the patient nor the medical treatment options that they are presented by the patient’s medical providers.

Unlike other states, Michigan does not yet have a family consent statute. Consequently, without an advance directive where an advocate is identified to speak on the patient’s behalf, the long ‘legal’ option is to seek the appointment of a legal guardian which requires a probate court finding of incompetency.

As a brief background, an advocate is an individual designated to exercise powers with regard to another individual’s care and medical or mental health treatment. An advocate may even be granted the power to make anatomical gifts on the patient’s behalf. Successor advocates can be named if the first person named as advocate does not accept that appointment, is incapacitated, resigns, or is occasionally is removed from that role.

Two physicians, or a physician and a licensed psychologist, must initially determine after their examination of the patient whether the patient is unable to participate in their own medical treatment decisions. This inability to participate is the standard that is used before the medical providers can look to the advocate for decisions with regard to the patient’s care and medical treatment.

Before an advocate, or a successor advocate, can act on behalf of the patient, he or she must be provided a copy of the proposed advance directive and must then sign an acceptance of their patient advocate designation. Patient advocate acceptance forms contain the formal acknowledgements that:

the designation of the advocate is not effective until the patient is unable to participate in decisions with regard to the patient’s own medical or mental health;

the advocate’s powers with regard to the patient’s care, custody, medical or mental health treatment cannot be exercised if the patient himself or herself could not have exercised those powers on their own behalf;

the decision to withhold or withdraw the patient’s treatment cannot be made if the patient is pregnant;

the advocate can receive no compensation for making decisions; however, the advocate can be reimbursed for actual and necessary expenses incurred on the patient’s behalf;

the patient may revoke the designation, at any time, or in any manner that is sufficient to indicate an intention to revoke the advocate’s authority e.g. a verbal revocation by the patient;

the patient can waive his or her right to revoke the advocate designation with regard to the power to make mental health treatment decisions; if waived, the patient’s right to revoke that waiver can be delayed 30 days;

as a fiduciary, the advocate must act in accordance and consistent with the patient’s best interests; the known desires that have been expressed while the patient was able to participate in their own medical or mental health treatment decisions are presumed to be in the patient’s best interests; and

the advocate’s authority to withhold or withdraw treatment that will allow the patient to die will be permitted only if that grant of authority is expressed in a clear and convincing manner, and the patient acknowledges that such a decision could, or would, lead to the patient’s death.

Consistent with the advocate’s formal acknowledgment of these limitations on their authority, Michigan’s law also requires that the advocate must take reasonable and affirmative steps to follow the patient’s desires, instructions or guidelines given while the patient was able to participate in their own medical or mental health decisions.

Only a few court cases addressed an advocate’s authority under an advance directive. One court held that a medical provider must be presented with the actual durable power of attorney for health care before its terms can be implemented, before the decisions made by the advocate can be relied upon by the medical providers. If the patient, even without capacity to make medical treatment decisions on his or her own, communicates an intent to revoke the advocate’s designation, medical providers must not rely upon the advocate’s assertion of authority. Another court suggested that a third party should not rely on the advocate’s authority when a question exists whether the patient has regained their ability to participate in their own medical treatment decisions, which often happens during the end-of-life journey, which can be very difficult to navigate. In yet another decision, the court suggested that medical providers could face personal liability if they rely on an advocate’s assertion of authority if a court subsequently determines that no such authority actually existed, although by statute physicians are protected who follow the directions of someone who they reasonably believe is a patient advocate. These court decisions clearly respect the patient’s autonomy, but they provide little guidance to medical personnel with respect to the advocate’s authority when the patient’s mental condition waxes and wanes during their treatment.

This focus on an advocate’s authority stems from my personal involvement on a hospital’s bioethics resource committee that provides consultation to families, physicians and nurses that try to honor the patient’s autonomy, rely on an apparently valid advocate’s designation, and respect the professional medical judgment of those providers who treat the patient. Challenging situations that regularly come before that committee include:

Inconsistent Directives: The patient clearly states one thing in their advance directive signed 10 years ago, e.g., “I want all treatment options exploited by medical providers to their fullest extent possible” which contradicts a much more recent verbal, and lucid, statement made by the patient to their physician – “I no longer want, nor can I tolerate, any more chemotherapy.” What controls and guides the advocate: the written word of an old medical directive or the patient’s current reality as communicated to their physician? Old durable powers of advance directives need to be regularly updated to accurately reflect the patient’s most current wishes and clearly address their most recent health conditions, treatments, and prior reactions to procedures and treatments that may present more burden (e.g., pain) than benefit (e.g., extend the patient’s life 3 days).

Futility: The advocate directs that a feeding tube be administered to the patient (a painful treatment) yet the patient’s physicians have concluded that the patient’s condition is terminal, and installing the tube will be futile and will not alter the patient’s impending death. Often the advocate’s decision is made with considerable emotion, and sometimes even guilt. Does the advocate’s decision advance the patient’s best interests, or does the advocate substitute their own judgment for what they think is best for the patient? The line between the two is frequently not clear. The patient needs to talk directly to the advocate with regard to their wishes, well before their admission to the acute care setting, to assure themselves that the advocate is prepared to follow the patient’s directions, even if those directions are inconsistent with the advocate’s own personal views, or in some cases, contrary to the advocate’s religious beliefs.

Hard Choices: A child named their parent’s advocate can be torn between two different medical treatment options: e.g., either a regimen of powerful antibiotics or the amputation of the patient’s infected limb. The latter choice will adversely affect the patient’s future quality of life, but it may be more effective, long-term, than the antibiotics. Add to the dilemma conflicting voices of other children also standing around their parent’s bedside. Is the advocate emotionally capable of making the difficult decision? Can the advocate withstand the pressures of others expressing contradictory views of acceptable treatment? Simply naming the patient’s oldest child may not always be the best choice. The patient needs to assess whether their advocate candidate is fully capable of making the tough emotional decisions, such as authorizing a treatment that will definitely cause the patient considerable pain or one that will affect the patient’s quality of life. On the other hand, most challenging of all, is the advocate capable of directing the withdrawal of the patient’s life support? Choosing an advocate is never a ‘one-and-done’ decision. The selection of an advocate should be periodically revisited, or challenged, to confirm that the advocate is emotionally prepared to make the ‘hard decisions.’

Advocate’s Diminished Capacity: A situation that is often not addressed in an advance directive is when the advocate’s own mental frailty impedes their understanding of either the patient’s medical or mental condition, or the treatment options presented to the advocate for guidance. Consider a married couple is in their mid-80’s. The wife is admitted to the hospital with a traumatic brain injury due to a fall at home. Her is husband is named as her advocate. Her husband is showing early signs of dementia and thus he has questionable decisional capacity. Consequently, the husband struggles to comprehend the physician’s proposed various treatment options for his wife. The reality in this situation is that the wife is the physician’s patient, not the husband. Must the physician follow the directions of the husband when the physician has legitimate concerns about husband’s own cognitive ability to understand and make best interest decisions on his wife’s behalf? Consider imposing a precondition of competence on the advocate’s exercise of authority. Example: “My advocate shall possess the following powers so long as my advocate, in the opinion and judgment of my treating physician, is capable of understanding both my medical condition and the medical treatment options that my treating physician presents to my advocate. If in the medical opinion of my treating physician my advocate is incapable of meeting this condition of comprehension, then my treating physician shall then consult with and shall follow the directions of my successor patient advocate named in this instrument, subject to the same condition.”

Against Medical Advice: Should an advocate be authorized to direct the patient’s discharge from a hospital setting against medical advice? Removing the patient from hospital setting could further jeopardize the patient’s health. The decision to remove the patient from the hospital against medical advice is probably not in the patient’s best interests, at least in the absence of providing reasons for the decision to remove the patient from the acute care setting. Often the advocate’s decision take the patient from the hospital is made out of a fear of the cost of hospitalization. Most advance directives do not discuss the facts or circumstances that would warrant a patient’s discharge against medical advice. This, too, is a topic that the patient should discuss at length with their advocate.

Due to the recent opioid crisis upon us, Michigan recently modified its laws to permit a patient to ‘opt-out’ of being administered opioids to relieve their pain. If declining the administration of opioids is sufficiently important, an immediate conversation with the advocate is warranted. More importantly would be the need to obtain an updated, or refreshed, durable power of attorney for health care where those non-opioid directions are spelled out. That then provide a timely opportunity to review the choice of advocate and address some of the challenging situations that regularly occur in an in-patient hospital setting where both the advocate and the health care providers struggle to made decisions in the patient’s best interests.

Durable powers of attorney for health care are a common document in most estate planning ‘packages.’ An existing durable power of attorney for health care should be closely read every two or three years to determine if the directions are sufficiently clear, the document reflects the patient’s ever-changing health conditions, and if the designated advocates are still capable and ‘up to the challenge’ to follow the patient’s directives. Once updated, the durable power of attorney for health care can then be given to their preferred hospital so that it becomes a part of the patient’s medical record.

Estate planning, whatever it consists of, is never a one-time event; it is an on-going process throughout one’s life.