What is Advance Care Planning?

PART ONE

Being faced with the decision of whether to administer life-saving measures for a critically injured and incapacitated loved one is one of the most difficult decisions a person can make. However, there are steps we can all take to prepare ourselves and our loved ones for such possibilities.

Advance care planning is the process of discussing and documenting your wishes for emergency medical treatment or care in the event your doctor is unable to determine what your medical wishes may be. It is recommended that everyone aged 18 and older have a documented advance care plan, regardless of your current health status.

Advance care planning prompts you to think about and document what matters most to you. Though plans can be informal (that is, communicated verbally), a formal advance care plan tangibly documents your wishes on forms such as a living will or health care power of attorney. Those documents are then shared with a trusted loved one and your medical team, increasing the chances of your wishes being followed.

The Four Steps to the Planning Process

The four steps of the advance care planning process are:

Understand your current health status
Reflect and prioritize your care goals
Designate a healthcare agent
Communicate your wishes to your healthcare agent and medical providers

This article is the first installment of the series to focus on advance care planning as described in the guidelines to planning advance directives published by Harvard Medical School. This series begins with a discussion of the first two advance care planning steps: (1) understand your current health status and (2) reflect and prioritize your care goals.

Step 1: Understand Your Current Health Status

Health care planning is appropriate at any stage of life and is recommended for all adults. Before documenting your wishes, especially if you are facing a major medical condition, it is important to talk to your doctor about your health status. This dialogue can help you better consider the possible medical scenarios you may experience in the future.

Some helpful questions may include the following:

My family has a history of (applicable condition). Am I at risk of this in the future?
What is the usual course of (any condition you may have or develop)?
What are my chances of developing, recovering, worsening from a condition?
What is the recommended treatment? Are there alternatives?
Are there side effects of the illness and treatment?
How will the recommended treatment affect my functioning?
How will pain or discomfort be managed?

This conversation is also a good time to ask your doctor to clarify any unknown medical terms and procedures you may encounter in the future, as well as seek details of key terms that may appear in advance care planning documents (e.g., intubation, brain death, coma, vegetative state, hospice, etc.). The circumstances around the use of these terms can vary greatly, so it’s critical to understand them before addressing them in a planning document.

Artificial nutrition, for example, is a medical procedure used to treat someone who cannot eat or drink enough to sustain their health. It may be used to sustain life or may also be used in unexpected scenarios to heal, such as during severe burn treatment when the body requires more calories and protein to repair itself than food consumption alone can provide. With that understanding, you might not want your advance care plan to bar artificial nutrition under all circumstances, but instead only when administered for select conditions.

If you think you want to add a specific condition or procedure to your planning documents, make sure to ask your doctor under what circumstances the procedure might be administered to gain a full understanding of the nuances of its application.

Step 2: Reflect and Prioritize Your Care Goals

Once you have a good understanding of your current health status and its potential trajectory, it’s important to reflect on what your medical goals are. Generally, an advance care
planning document centers around three goals: (1) prolonging life, (2) obtaining maximum comfort and (3) maintaining daily function.

It is up to you to decide if you would like to prioritize these or other goals in your planning and to reflect on the medical procedures you’re willing to attempt to meet your goals.

Your care goals are personal and should be individualized based on what your wishes for emergency treatment, incapacitation and end of life are. To get started, some examples of care goals may be:

Meaningful life allows me to look at and recognize my family members. If I can’t…
If treatment will cause me long-term physical pain, I would like… and would not like…
It is important to me to remain independent. If I am unable to physically care for myself (e.g., bathe, groom, etc.), I would like…
If I am unable to breathe on my own, my preference is treatment that…

Once you’ve determined your goals, you will be able to make decisions on your planning documents that are in alignment with them.

Conclusion

Discussing medical wishes for what you would like to happen to you in the event you’re unable to decide or communicate for yourself is a frightening thought for most people. However, reflecting on your health and discussing and documenting your medical wishes have the potential to make an emergency or even end of life scenario easier for you, your loved ones and medical providers. Look for more information on step 3 of the planning process (designate a health care agent) in the next installment of the advance care planning series.