When you’re seriously ill, how do you make choices? Who can step in if needed? Can you opt out of care?

Reverend Clint Moore, PhD, addressed these questions for myasthenia gravis patients and family members at the Conquer MG Spring Patient Meeting in April, 2018. Highlights are below.

Video clips of his presentation are on the Conquer MG YouTube channel.

Reverend Dr. Clint Moore

Dr. Moore (pictured, standing with Bob Rosecrans and Anne Flanz) is an Episcopal priest in the Diocese of Chicago. He serves as the Clinical Ethicist and Director of The Center for Clinical Ethics at Advocate Lutheran General Hospital and Advocate Children’s Hospital. Dr. Moore provides ethics education and consultations across all patient populations and medical professional groups.

Possible vs. Probable

Moore noted medical questions can be hard to answer because:

• A patient or family may focus upon what is possible, where even a one in a hundred chance of even a minimal recovery would be “worth” pursuing treatment. On the other hand, providers tend to base their practice upon what is probable.
• In the U.S., we value autonomy. This means there should be no limit on your ability to choose what you want to do as long as your choices don’t harm others.
• But it’s not always clear whether medical professionals should steer patients or hand them the decision reins.

Why do medical ethics questions matter if you have myasthenia?

Being critically ill can happen to anyone. When MG patients (whose illness is active) require surgery or have to be hospitalized, they have a higher risk of complications or more serious health problems. So it’s useful to think about your desires if your health goes south.

Just because treatment is available, should it be done?

Moore quoted Donald Berwick, MD, MPP, former president of the Institute for Healthcare Improvement:

“Many, many opportunities exist in health care to reduce costs while maintaining or improving quality, but few are as direct and consequential as the opportunity to stay our hand from delivering invasive, painful, undignified, and wasteful high-technology care to patients who neither want nor can benefit from that care.  At best, such care is profligate; at worst, it is abusive.”

Moore quoted Edmund Peliegrino, MD, when he noted we should:

• Determine what can be done; and then
• Consider what ought to be done.

Key Take-aways

With Western medicine, you don’t always have the right to demand a certain treatment. But you always have the right to say no to a treatment.

Whenever possible, it’s better when a medical procedure is done when it’s not an emergency. That way your health care providers can be prepared for problems, rather than just react to them.

If you appoint someone to be your “agent” (the person to make medical decisions in the event that you can’t), then have several conversations to make sure he/she understands and will follow your wishes. A study showed that the designated person tends to make choices that reflect their own wishes, rather than the patient’s. If your first choice says they couldn’t do it, believe them and choose someone else.

Sometimes a doctor asks, “What do you want us to do?”

Moore notes this question shifts the decision to the patient and family, and they may not be able to answer. Instead, Moore suggests:

• The patient/family and medical team should discuss expectations.
• The patient/family should talk about what the patient wants (“It’s important to me to be able to play with my grandsons”), and communicate that to the medical team.
• The medical team can lay out possible routes, and what it will take to get where the patient wants to go.

In addition, individuals can:

• Have a Durable Power of Attorney for Health Care
• Complete “Five Wishes” material

Power of Attorney for Health Care

You can designate an agent – a person to make medical decisions if you are unable. In Illinois, your form must identify:

• Your name and address, your agent’s name and address, your signature, a date not in the future, and a witness signature.

Although not required, you also can specify:

• A level of medical intervention as direction for agent.
• Successor agent(s) (if your primary choice cannot serve)

The POAHC document must be available. If you cannot produce your form, then the health care provider must assume there is none.

 Choosing an Agent

You’ll want to have several conversations to make sure the person you choose will carry out your wishes, rather than their own. Your agent:

• Must be an adult (18 in Illinois)
• Has the same access to patient’s medical records that patient has
• Has responsibility to make decisions as patient would have made them
• May resign or refuse to serve
• May NOT appoint someone to serve in their place

If you don’t choose an agent and a decision about your care needs to be made, Illinois state law turns (in this order) to your:

• Guardian
• Spouse
• Adult son/daughter
• Parent(s)
• Adult brother/sister
• Adult grandchild
• Close friend (affidavit required)
• Guardian of the estate

Five Wishes

How do you decide about the level of medical intervention you want? One tool is “Five Wishes.” For the price of postage, you can order this material at www.fivewishes.org. This simplified 12-page booklet walks you through reasonable statements regarding your care, pain management, and how you want to be remembered. (Also, Conquer MG has a limited supply; call to request a copy.)

You think about the questions, complete the form, make copies, and then give copies to your agent(s), and your health care providers.