Making Health Care Decisions for Someone Else

A lifelong family friend asked Jane if she would be her health care agent under an Advance Medical Directive (AMD) she was planning to sign. Jane didn’t know what to say or think, so she said, “Sure. I would be happy to.” But she didn’t really know what she was getting herself into.

When someone wants to appoint you as a health care agent, the most important thing to ensure is that this person has also signed a HIPAA Waiver (or that a HIPAA Waiver is written into the AMD) allowing you to obtain all confidential medical information of the person signing the AMD, because otherwise you will be forced to make decisions without having the appropriate medical knowledge to make such decisions.

A HIPAA Waiver allows you to get the same medical information the patient would get – complete access to the patient’s medical records and any information from the doctors, the hospital, or the nursing home that you need about the patient’s health or health care.

Recently, the American Bar Association released a handbook for people such as Jane, who need more information before accepting the responsibility of making health care decisions on someone else’s behalf. What follows are some highlights of the ABA Handbook.

If you are a health care agent (sometimes called a health care proxy), your role calls for you to do the following:

• Make decisions and take actions that a patient would make or do, if able.
• Be able to talk with the medical team about treatment choices. You will have the opportunity to ask questions and get explanations, so that you can understand the patient’s medical condition and treatment options as much as possible.
• Ask for consultations and second opinions about the patient from other doctors.
• Stay informed about the person’s condition.
• Consent or refuse medical tests or treatments—including life sustaining measures in some, but not all, cases.
• Read the medical records and keep a written log of medication and treatment changes.
• Decide whether to transfer the patient to another doctor or health care facility (such as a hospital or skilled nursing home).
• Get the doctor and other medical professionals to communicate with the patient if he or she is still able to understand anything.
• Advocate on the patient’s behalf and assert yourself with the medical team, if necessary. If you are confused by the doctor’s recommendations, insist that medical issues be explained to you in words you can understand.

Plan Ahead with the Patient, if Possible

If you are asked to be a health care agent for someone, you can say “no.” But, remember, assuming the role is an important way to help someone you care about. It is normal to feel anxious about the role, as it is a tough, emotional position to be in. If you do accept it, know that you will be expected to take action and make decisions on behalf of someone who trusts you to do so.

It is a wise idea to prepare in advance with the person for whom you are the agent. This means having conversations about what the individual would want before a crisis arises. Not everyone can do this but, if there is still time, you will be glad that you did. Remember that although it is hard to talk about illness and dying, it’s a lot harder making decisions without having a sense of what the person would want.

Also, be sure your loved one has signed Advance Medical Directive Documents, and that you and medical professionals know how to access them. At the Farr Law Firm, all of our clients are enrolled in Docubank, making their documents easily accessible for their loved ones.

Making Medical Decisions

If you assume the role of health care agent, be aware that specific details about every possible medical event will not all be spelled out in the Advance Medical Directive. So, whether you had a conversation with the patient or not, you can use these basic steps to help you make any decisions you need to make on his or her behalf:

1. Find out the medical facts. This requires talking to the doctors and getting a complete picture of the situation. Questions you can use include:

• What is the name of the patient’s condition?
• If you don’t know exactly what’s wrong, what are the possibilities?
• Are tests needed to know more? Will the outcome of more testing make any difference in how you treat the patient, or in how the patient wants to be treated? (If not, why do the test?)
• What is the purpose of each test? Do these tests have risks?
• Is the information you need worth the risk of the test?
• How do you explain the symptoms?
• How severe or advanced is this case?
• What do you think will be the likely course of this disease or condition?

2. Find out the options. Make sure the doctor describes the risks and benefits of each medical procedure (surgery, medication, feeding tube, X-Rays or other tests). In comparing these options, ask:

• How will this procedure make the patient improve or feel better?
• Can this procedure be done on a trial basis first? What is a reasonable amount of time for a trial? Is the doctor willing to stop it after an agreed-upon trial?
• What defines “success” for this procedure? (It may not be what the patient would consider a success.) What is the success rate for people similar to the patient?
• Will this procedure interfere with the patient’s ability to do things and to communicate meaningfully with family and friends?
• If the patient is nearing the end of life, how might the procedure affect the circumstances of death? (For example, will it likely require hospitalization instead of home care?)
• What are the possible side effects of the procedure?

3. Consider what the patient would want. Your goal should always be to choose as the patient would probably choose, even if it is not what you would choose for yourself.

• If you know what the patient would want, most states laws law say you should act on it. If the patient left written instructions, you must do your best to follow them.
• If you do not know the patient’s wishes for the specific decision at hand, you still might have a solid basis for figuring out how he or she would decide. Consider the patient’s values, religious beliefs, past decisions, and past statements.
• Consider prior discussions the individual had with you or others that may shed light on the patient’s wishes and values. You may also find it helpful to discuss this with the patient’s treating health care providers.

Resolving Disputes and Getting Help

Remember, if your loved one has an Advance Medical Directive and you are the health care agent, you have the legal authority to make medical decisions, even if other family members disagree. However, most agents are more comfortable if there is agreement among family members. Good communication can help bring about agreement.

Here are some tips:

• Listen carefully to what others have to say;
• Respect their points of view;
• Try to understand why they are taking positions different than yours;
• Repeat back their position to make sure you understand them;
• Think about what past events or attitudes might be causing them to take such a position;
• Remember that you are seeking to stand in the shoes of the patient and to advocate the patient’s preferences and values, if you know them, rather than your own.
• Ask for a care planning meeting with the staff of the facility and all interested family members. This can often be very helpful.

If you need help with your role as a health care agent or in resolving disagreements with family or medical staff, a hospital patient representative or ombudsman, long-term care social worker, long-term care resident and family council, long-term care ombudsman, or clergy or spiritual advisor can be of assistance. Please see our helpful resources for more details and contact information for some of these individuals.

Planning for Incapacity

To ensure your wishes are met, it is important to start your planning while your mind is still sharp and your judgment is sound, so you are prepared in advance if a crisis occurs. When you do so and you choose a health care agent, be sure to discuss with them what the role entails and have a conversation with them about your wishes.

If you have not done Incapacity Planning, Estate Planning, or Long-Term Care Planning, or if you have a loved one who is nearing the need for long-term care or already receiving long-term care, please contact us for an initial consultation:

Fairfax Estate Planning and Incapacity Planning: 703-691-1888
Fredericksburg Estate Planning and Incapacity Planning: 540-479-1435
Rockville Estate Planning and Incapacity Planning: 301-519-8041
DC Estate Planning and Incapacity Planning: 202-587-2797