What is Advance Care Planning and How Do You Set It Up?

For some of us, it feels like the realistic extent of planning ahead is knowing what we are having for dinner while eating breakfast. Life has a way of throwing things at us which can leave us postponing plans for the future to focus on getting through the present. 

However, making plans for your health in the event of a major medical event like an accident or serious disease is a straightforward process that —given its substantial impact— doesn’t require a big investment of time. 

Advance care planning is the process of thinking, discussing, and recording your health care wishes to ensure that they are known, understood, and respected. While it’s uncomfortable to think about things like whether or not you would want CPR or a feeding tube, the directives established in an advance care plan ease the emotional and legal toll of difficult medical situations. Advance directives only come into play when you are unable to speak for yourself.

Regardless of your current health, having an advance care plan in place is a good idea. It’s important to note that advance directives are most successful when coupled with ongoing and thoughtful conversation about your wishes with your loved ones. As the Clinical Director of Palliative Care at Hebrew SeniorLife, I help facilitate those discussions.

Why should you set up an advance care plan

Advance care planning helps you:

Think about what is important to you and how you want to receive care

The advance directives laid out in an advance care plan cover the common medical procedures that would be performed in the event of you being incapacitated. The forms required present different considerations in a straightforward manner so you can feel comfortable that you are not overlooking any major decisions that your loved ones could be confronted with.

Keep control over your care

By putting your choices in writing you can receive only the care you want — not the treatments that you don’t want. By maintaining control you have the peace of mind that your dignity will be preserved as you desire. 

Other people won’t have to make decisions for you

Without an advance care plan, there is the potential that care decisions might be made by the courts or the state. The lack of documented plans can also lead to conflict within your family as they could have their own differing opinions or memories about what you would want.

What do you need to set up an advance care plan?

Depending upon your current health there are a few different approaches. You do not need a lawyer to complete advance directives.  

Health care proxy

An ideal health care proxy knows you well, is able to discuss sensitive issues, and is someone you feel confident will respect your wishes. They must be at least 18 years old, not your physician, and have the capacity to act in your interest. 

When a physician certifies that you are unable or “lack capacity” to make medical decisions for yourself, the person who you have selected as your health care proxy —also referred to as a health care agent— will begin to speak on your behalf regarding medical care. Your agent will have access to your medical information and records and will have the authority to accept, forgo, or discontinue treatments that may otherwise prolong your life. Your health care proxy will also be able to make decisions about medical tests, treatments, or surgeries.

It’s important to note that in the event of an emergency, there isn’t a process for legally designating a default health care proxy if you had not previously chosen one. Without a health care proxy, nobody —not even your spouse or next of kin— has the legal authority to speak on your behalf. Note that a health care proxy is different from a durable power of attorney, which is a designation more concerned with financial and legal matters.

Download a health care proxy form.

Advance Directive or Living Will

Also known as a living will or a personal directive, an advance directive gives your doctors and health care proxy first-hand information on how to match care to your choices. It provides information about what’s important to you and the kind of care you want and do not want. While it is your personal document or statement and not legally binding in Massachusetts, an advance directive can be extremely helpful in documenting your wishes and providing a framework for a discussion with your family and health care proxy.

If you are not in a position to assign a health care proxy, you can still complete an advance  directive.

Download a personal directive form.

MOLST, Medical Orders for Life-Sustaining Treatment

In Massachusetts, we use a form called MOLST, which stands for Medical Orders for Life-Sustaining Treatment. It is a medical order designed for individuals with a serious illness or advancing frailty. It specifies a number of medical treatments and procedures that could arise over the course of your illness, and what course of action you would like to take. It must be signed by a physician or advanced practice provider. 

You may come across another form called a POLST (Physician Orders for Life-Sustaining Treatment), which is used by other states. 

Download a MOLST form.

What is the difference between a MOLST and an advance directive?

There are several key differences between the MOLST and advance directive. One is that the MOLST is only for people with a serious illness, while an advance directive is important for all people, regardless of their health status. The MOLST form is filled out with your doctor and signed by them. It is based on your current health status and contains actionable medical orders that are effective immediately. An advance directive gives guidance about your wishes should you become unable to make medical decisions, and while it’s a helpful tool, it is not legally binding.

Discussing and deciding your health care wishes

Once you designate a health care proxy and fill out an advance directive or MOLST, that doesn’t mean you can’t change anything. As time goes on your health and general situation can change. Perhaps your proxy no longer feels capable, or you have a major shift in your health. Try to keep lines of communication open and revisit your preferences as needed. Make sure to update your advance directives whenever you need to make a change

The decisions contained in an advance care plan come from self-reflection. You may ask yourself, what makes my day worthwhile? What are my goals for care? Are there circumstances under which I would refuse or discontinue treatment that might prolong my life? Thoughtful consideration of these questions will help shape an advance care plan that is right for you.

Find a time to speak with your health care proxy and other important people in your life about your wishes so that they will know the kinds of decisions you want them to make. It can be an uncomfortable topic for some people, so be patient with yourself and your loved ones on this journey. The more you talk, the easier it will get and the more confident you’ll feel in your decisions.

Resources for advance care planning

There are plenty of places to find more information to help you put together an advanced care plan. 

• The Conversation Project is a good source for tips on having discussions around end-of-life care. 
• Massachusetts Medical Orders for Life-Sustaining Treatment offers multilingual information and documents, a detailed glossary, and general information.
• Honoring Choices provides information and tool kits about the health care proxy and advance directive, including a video on setting up a health care plan.

Palliative care providers like me are often consulted when families are faced with a difficult health care decision. At Hebrew SeniorLife, palliative care is integrated as part of the care team for patients at Hebrew Rehabilitation Center and our home health service. We help patients clarify and document their goals of care, work with families as they make decisions regarding a loved one’s care, and focus on relieving symptoms of serious illness.  Our person-centered services make sure to honor each individual's wishes. Learn more about health care services for seniors in the Boston area or contact us today.