Advance directives provide peace of mind for patients and families

During a conversation with her three sons—one a pharmacist and the other two nurses—Carol Ambrosino realized the critical importance of having advance directives. Advance directives are legal documents that detail instructions for emergency medical care if you cannot communicate them for yourself because you are unconscious or unable to speak. Ambrosino, diagnosed with common variable immune deficiency (CVID) at 48, had been hospitalized for knee replacements and digestive disorders. Now, in her late 60s, Ambrosino considered the implications of not having the legal documentation in place to protect her medical preferences should she become unable to communicate.

“If you don't have your advance directives letting people know what your wishes are or who can speak to them on your behalf, you’ve got nobody. A stranger is making those decisions for you. I'd rather have somebody who knows what I want to make those decisions. It just made sense to me,” said Ambrosino, 69, who prepared advance directives two years ago.

“As we are trained and taught from a very young age with immune deficiency if you don't advocate for yourself or have somebody advocate for you, what have you gained? You have taken yourself out of the equation.”

Parts of an advance directive

One part of an advance directive is a living will in which patients state specifically the lifesaving medical procedures they want or don’t want. For example, they may not want cardiopulmonary resuscitation (CPR) and opt for a do-not-resuscitate (DNR) order, or they may want a mechanical ventilator or feeding tube only under some circumstances.

Another part of an advance directive is naming a healthcare proxy, or durable power of attorney for healthcare, to represent you. The healthcare proxy acts on your behalf to support the implementation of your living will and is authorized to make medical decisions for you. The healthcare proxy may be chosen in addition to or instead of the living will.

Clinical ethicist Dr. Eileen Phillips said patients lose decision-making capacity for a variety of reasons, and families don’t always follow the patient’s medical treatment preferences. It’s not that family members don’t want what’s best for their loved ones, said Phillips.

“Some people say, ‘I'm married, but I don't trust my husband to let me go if I was in some horrific accident because he loves me too much. So, he’ll allow a tracheotomy in my airway and put a feeding tube in my stomach to keep me alive artificially, and I don't want that. I want someone who's OK with making a different decision and is comfortable with that.’ I talk through things like this with people quite a bit,” explained Phillips.

Creating an advance directive empowers a patient and helps guide the conversation between them and their healthcare proxy.

“You have time to educate them on your wishes, on your diseases, and maybe on experiences you've had with family members where you've seen them go through things and you think, ‘I would want this. I would never want that,’” said Phillips.

Retired nurse Donna Hawkins, 68, who has multiple chronic conditions including combined immune deficiency and bronchiectasis, said she doesn’t want CPR, nor does she want doctors to use a ventilator to prolong her life unless it’s to support her through a crisis. She shared her wishes with her husband and prepared advanced directives in 2022.

“I think people need to address it as they age and as their diagnoses change,” said Hawkins.

Phillps, 29, diagnosed with CVID, has an advance directive. Most people think only the elderly need one, she said, but even younger people can experience life-altering health situations.

“You never know when you're going to end up in a car accident or something like that. But you start throwing in these chronic conditions, and you need someone who you can trust to advocate for you,” said Phillips.

“That's even more complicated by the fact that working in clinical ethics, I've stepped into family dynamics where someone is the decision-maker, but someone else says, ‘I'm going to take you out of the will if you don't make certain decisions I want.’ Things get very contentious.”

Choose a healthcare proxy who understands your medical conditions and can vocalize your needs, advised Phillips. That proxy may be a spouse, one or both parents, a sibling, or a close friend.

“Especially when you have a rare disease, you need someone willing to take time to learn about that rare disease and learn your personal beliefs and preferences,” said Phillips.

“I think another piece that people sometimes forget is that their decision-makers might have different beliefs that conflict with their own. Then the decision-makers are very torn between honoring the patient’s wishes and their moral compass. Make sure that the person is comfortable with that.”

How to create an advance directive

Advance directive forms can be obtained from your State Attorney General’s Office, your local Department of Aging office, the American Association of Retired Persons (AARP), healthcare providers, and hospital social workers and chaplains. There is no need to hire a lawyer to complete them. Just follow your state’s instructions. Be sure to keep a copy yourself, give one to your healthcare proxy, and keep one on file in your primary healthcare provider’s office.

Take care when expressing certain care instructions, said Phillips. For example, you may not want to be intubated, except in cases where it could be therapeutic for a short period, so be clear and say, “I do not want to be permanently intubated.”

“Be very cautious as to how you word the directive, and you can talk through that with your doctor,” said Phillips.

Advance directives not only take the burden off families to make decisions but also relieve medical providers of the responsibility, said Ambrosino, who works in a healthcare setting.

“Unfortunately, I see it from both sides. The people in the hospital are trying to say, ‘Do we? Don't we?’ The person’s unconscious and unable to make a qualified decision, and nobody is listed to make those decisions for the patient,” said Ambrosino. “I truly think having an advance directive is a win-win for everybody.”