11 Who Should Direct My Care?
Norm had serious reservations over granting his wife the power and responsibility to make medical decisions for him, once he was no longer able to make those decisions for himself. Norm loved and trusted his wife wholeheartedly. But Norm didn’t want to burden his wife more than she already was in managing her own medical conditions. Norm and his wife were both aged and weakened. Indeed, his wife was frail, mostly due to the several medical conditions that she constantly battled. Norm helped his wife manage her medical conditions, including communicating with her doctors so that he could remind her of details and give her sound advice. Norm’s wife always took his advice on her own medical treatment. Yet Norm’s wife never gave Norm advice on his own medical condition, of which she knew little. No, Norm concluded, he wasn’t going to designate his wife as his patient advocate. He instead had just the trusted person in mind.
Directives
Having access to helpful healthcare in the course of one’s final decline is one thing. Having the mental and emotional capacity to choose, authorize, and direct your healthcare is another thing. Medical conditions, especially those hastening the end of natural life, can make a person either unconscious or mentally unsound and incompetent to make informed and reasoned medical decisions. Medical care providers, particularly hospitals and nursing homes, thus generally require patients to put in place an advance medical directive, also referred to as a healthcare power of attorney, living will, or patient advocate designation. Medical facilities need someone legally responsible to authorize a patient’s care, when the patient is unable to do so. Your choice of the person whom you most trust to make medical decisions on your behalf, and the factors, terms, and conditions you communicate to guide that decision, can be important to your peaceful transcendence.
Conditions
Advance medical directives take effect when the patient is unable to give informed consent to medical treatment and otherwise guide the medical team in treatment decisions. The medical system generally requires a patient’s informed consent before medical practitioners intervene with treatments that may be invasive and carry their own risks. But in some instances, a patient is unable to give consent. Conditions disabling a patient’s cognitive and communicative abilities can include coma, general anesthetic, or similar unconscious state, stroke or other paralysis, dementia, delusion, or even severe depression, fatigue, weakness, or general listlessness. You may or may not reach one of those states, but if your decline suggests their possibility, as nearly any decline would, you should have an advance medical directive in place.
Effect
You may find that your advance medical directive and the trustworthy care from your closest family member with which it provides you is a saving grace in the course of your journey. The effect of an advance medical directive, appointing your most trusted family member or friend as your agent for healthcare decisions, is not only to give your medical care providers legal authorization. An advance medical directive also gives you and your family members peace, order, and assurance. You, first of all, need confidence that your family members will respect your wishes. Your sound choice of a trusted agent gives you that assurance. Your family members also need an orderly way of resolving disagreements they may have over your medical care. Your designation of a trusted patient advocate provides that resolution. Your family members may still weigh in with your advocate in whatever manner they wish, but your advocate gets to decide consistent with your expressed wishes. If you don’t have an advance medical directive in place, family members and medical care providers may have to resort to the probate court at considerable delay and expense for an order and authorization. Putting your advance medical directive in place can be one of your best moves to prepare for your transcendence.
Candidates
Make a wise choice of your patient advocate. Your spouse would ordinarily be a natural advocate to choose, if you are married at the time of your final decline. But don’t choose your spouse if your spouse would be incapable, ineffective, or unduly burdened. Your decline may be hard enough for your spouse, without adding the burden of making medical decisions, particularly the decision not to prolong life-sustaining but invasive medical care that might not halt or reverse the course of disease or restore consciousness. Both you and your spouse may prefer to appoint your oldest, most-responsible, or closest adult child. If you have no children or no suitable candidate among your children, you may instead find another relative to be the best candidate, or you may need instead to rely on a friend, pastor, or professional such as a medical social worker or estate attorney. When choosing a patient designate, consider their independence from any undue influence and their availability, maturity, stability, wisdom, and sensitivity, and their familiarity with you, your commitments, and your preferences.
Consent
You don’t have the entire choice of your patient advocate. The trusted family member or other individual whom you choose must consent to their appointment. You wouldn’t want to choose a reluctant advocate, one who would ultimately decline to give your medical care the time and consideration that it is due. So account for your candidate’s willingness. Speak with them about your interests to see if they are committed to carrying them out. Even if your patient advocate initially consents, they may at the time of your need back out or may be unable to serve based on their own ill health or other interfering circumstances. A common practice is thus to appoint a backup designate in case your first choice is unwilling or unable to serve. Give careful thought to your backup choice, too.
Communication
Perhaps your most-important step, though, is to clearly communicate your wishes and preferences to the trusted advocate whom you designate. It may matter less whom you choose as advocate than what you direct them to advocate. Give careful consideration to the goals for your medical care, in the circumstances of your decline. Those goals may vary depending on the length and nature of your expected medical course, and your changing capacities during your decline. You may initially desire more medical care and be willing to accept more-invasive care with greater potential side effects, while later on you may prefer only palliative but not preventive or curative care. Communicate these or other desires to your patient advocate. If you have an experienced patient advocate or members of your palliative care or hospice care team who can give you guidance and advice, then listen to that advice but make your own informed decision. Consider including in your communications specific treatments, procedures, or life-prolonging measures that you authorize or refuse, and the conditions under which you do so. In any case, be as general or specific as you wish in communicating your desires, terms, conditions, and preferences.
Documentation
Your state’s probate laws will determine the form in which you must communicate and confirm your advance medical directive. Some states and attorneys label written communications of medical-care preferences a living will, while treating an advance medical directive as a separate document designating the advocate to carry out the living will. Your medical care providers and your hospital, nursing home, or other facility may offer you advance medical directive forms to complete and sign if you have not prepared your own. Consider consulting a skilled and experienced estate-planning attorney to help you prepare your advance medical directive. Medical care providers and facilities have their own interests that may conflict with your interests. Your estate-planning attorney will have no such conflicts and may be especially adept and sensitive at helping you document your precise interests, goals, and concerns. Ask your estate-planning attorney to help you prepare your advance medical directive at the same time that you prepare or update your last will and testament. It is a common estate-planning practice to do so.
Execution
Your state’s probate laws will also determine the specifics as to how you must execute your advance medical directive to ensure its recognition and enforceability. Those laws generally require that you sign at the end of a written document expressly designating your patient advocate, granting the advocate certain rights and responsibilities, and stating the scope of the advocate’s powers, whether for instance to include the withdrawal of life-sustaining treatment and measures. Those laws may also require two or more adult witnesses to sign the document, attesting to your identity and signature. Those laws may also require the dating, notarization, and seal of the document, and that the designated patient advocate sign an acknowledgment accepting the designation. The particulars of executing a valid advance medical directive are numerous, specific, and rigorous enough to justify doing so with the assistance of your estate-planning attorney, rather than in a rushed manner at a medical facility later, when you most need it but may be least able to consider it. You must execute your advance medical directive when still competent. Do it now, when you are most able.
Distribution
You should retain the original advance medical directive with your will and other estate-planning documentation, in a secure location where your family members can readily find it. That location may be a file drawer in your home office, banker’s box of records in your basement, or similar location. But make multiple copies of your advance medical directive to distribute to your designated patient advocate, your backup advocate, and your medical care providers and medical care facilities. Your medical care providers will keep a copy on file for ready reference in the event of your mental incompetency during the course of treatment. Do not hesitate to freely distribute copies of your advance medical directive to professionals or facilities needing one in place to provide you with necessary medical care.
Revocation
You retain the right to revoke your advance medical directive as long as you remain mentally competent to do so. You may find that your designated advocate professes an inability or unwillingness to continue, because of their own condition or affairs, or because of a change in their relationship with you. You may alternatively discern that you could have made and should make a better choice of patient advocates. Whatever your reason, the choice to revoke your advance medical directive and choose another advocate is up to you. Your state law determines the permissible or required manner of revocation, which generally includes your signed writing revoking the directive, your retrieval and physical destruction of it and all copies, your oral revocation of it to the designate or the medical care providers attempting to rely on the designation, or your execution of a new and later-dated advance medical directive. The latest such designation among two or more designations controls. Don’t hesitate to revoke your patient advocate designation if needs, abilities, or relationships change.
Orders
Your medical care providers may translate your advance medical directive or living will, detailing your desired, approved, and accepted medical care, and limitations, terms, and conditions on that care, into medical orders. You may, for instance, have heard of do not resuscitate or DNR orders, which would be such a medical instruction based on an advance medical directive. Physicians may alternatively put in place a physician order for life-sustaining treatment or POLST, detailing the medical care your advance medical directive authorizes to sustain and prolong your life. In other words, medical care providers may not necessarily read your advance medical directive line by line in the event of a medical emergency, searching for appropriate authorization. They may instead rely on secondary orders that medical personnel can understand and readily follow in emergency circumstances. Respect your medical care providers’ need for clarity, but do not hesitate to question and correct any medical orders that are inconsistent with your wishes, terms, and conditions for medical treatment.
Influence
Beyond providing clarity and order, advance medical directives have the additional purpose of diminishing or ruling out certain risks that can unfortunately attend an individual’s demise. The discussion above already mentions, for instance, the possibility that a medical care provider or facility will make a decision contrary to your wishes based on a conflict of interest. The provider or facility may, for instance, want to bill for and profit from an additional expensive procedure that you would not have authorized. Conversely, the provider or facility may want to hasten death under circumstances promoting the harvesting of organs, when the patient would not have authorized it. For another example, advance medical directives carried out by trusted advocates can also prevent or discourage coercion by family members or others having an interest in the patient’s property or in reducing the costs of the patient’s care to preserve inheritable property. Put your advance medical directive in place now so that you and your family members do not face or engage in any such shenanigans.
Reflection
Does the nature and cause of your decline foreshadow a period of mental incompetence? Do you have an advance medical directive in place? If so, does it designate your most-trusted family member or friend to make medical decisions for you when you cannot do so for yourself? Or do you need to revoke it to designate a new patient advocate who is more available or whom you trust more? Have you named a backup patient advocate in your advance medical directive? Is your advance medical directive stored in a secure location with your other estate papers, where your family members can readily locate it? Have you distributed copies of your advance medical directive to your designated advocate and to your medical care providers and facilities? Does your advance medical directive adequately describe your wishes as to medical care and life-sustaining treatment or its withdrawal? Does your patient advocate understand your wishes and have the commitment to carry them out? Is your advance medical directive properly executed with your signature, the date, and at least two adult and competent witnesses, if not also with notarization? If you have not executed an advance medical directive, do you have a skilled estate-planning attorney to assist you?
Key Points
Advance medical directives authorize trusted persons to decide for you.
Mental incompetence is a common feature of an end-of-life decline.
Advance medical directives ensure care while reducing family disputes.
Choose your advocate carefully from among trusted individuals.
Name a backup advocate in case your first choice refuses or is unable.
Communicate your wishes, terms, and conditions to your advocate.
Document your advocate designation in the form your state requires.
Ensure your designation’s proper execution so that it is enforceable.
Distribute your advocate designation to the advocate and providers.
Medical care providers’ orders should be consistent with the directive.
Advance medical directives discourage conflicts of interest.