A Guide to Advance Care Planning: How to Get Started

Certified Care Manager, Aging Life Care Professional, and National Master Guardian Emeritus

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Planning for the possibility that you may need medical care in your life can feel tricky, no matter how old you are. You could need care in your 20s, in your 90s, or anywhere in between.

Regardless of how healthy or cognitively attuned you may be right now, it can be hard to imagine a day or time when you may not be. We may never know when we will need care, which is why advance care planning can be done at any age, and is recommended for all adults 18+. 

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Thankfully, care planning is a flexible process subject to change. The most critical part of care planning is having an advance directive, which we discuss below.

The reason for having an advance directive even at a younger age is because no one knows how long they will live. They may need someone they trust to make important decisions for them while they are unable to do so for health reasons.

What Is Advance Care Planning?

Advance care planning means putting a plan in place to ensure your values and goals of care are communicated and respected. Putting a plan together means researching and recording your preferences about the types of medical care you wish to receive if you can’t communicate or make decisions for yourself.

Why do I need an advance care plan?

It’s important to consider and share your wishes in advance so that the people who make decisions on your behalf and give you treatment know what you would have wanted.

Creating a plan can be very difficult to think about, especially if you’re healthy right now. This is one reason so few people take the time to do advance planning; it could mean facing an unpleasant scenario that they think won’t happen to them. However, we also see advance care planning as a positive way to reinforce your values and what makes life meaningful to you.

You can also think of advance care planning like having an insurance policy. You have home and car insurance and hope you won’t need it. But having these policies can help alleviate any stress by knowing that you will be covered if disaster strikes.

Advance care planning is the same, it is like having your own insurance policy for your future care needs.

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How Do I Create an Advance Care Plan?

These are several basic advance care planning components, but as things change, you may very well think of more. You can add what’s important to you or your family member and don’t hesitate to rewrite and adapt the plan as time goes on.

Advance directives

Without legal authority, you may not be able to access your family member’s healthcare providers or get information about their care. In some states, the advance directive needs signatures, in others witnesses or notaries are needed. Understanding the glossary of terms will help you sort out the differences between states and what is required.

  • Advance directives allow you to name someone to manage and make decisions on your behalf should you be unable to do so. This person who makes decisions is known as the Choose this person carefully since they will be responsible for carrying out your wishes. You can view Cake's advance directive forms by state to get started.
  • living will specifies the end-of-life care you want. This information is sometimes included in the advance directive form, but in some states it’s a separate document. You can make specific decisions about resuscitation, feeding tubes, and intubation, or you can speak more generally about the quality of life you would like to have, especially if you suspect you may not return to your previous level of functioning. On a much more personal level, think about your quality of life at the end of life. Is pain control more important or would you prioritize being more alert? Where do you want to be and who do you want caring for you?

If you can't complete a living will or advance directive because you're unable to notarize, print, or find witnesses, you have other options. In light of the COVID-19 pandemic, Cake worked with Providence Health and Ariadne Labs to develop two alternatives that can be completed quickly online: the Trusted Decision Maker Form and a COVID-specific advance care planning form.

Both forms relay your health care preferences to hospital staff without the need for a printer, witnesses or notaries, and, while technically not legal documents like advance directives or legal wills, the completed forms are valid and will still be taken seriously by doctors and help you communicate your wishes to your loved ones. Once you complete your form, you'll receive a PDF and an opportunity to instantly share the document with a trusted person. You don't need to complete both forms, so fill out whichever appeals to you. Here are the details:

  • The Trusted Decision Maker Form was created in collaboration with Dr. Ira Byock of the Providence Institute for Human Caring. In the form, you'll identify a trusted decision maker (who you'd like to speak on your behalf if you become incapacitated) and pick from four pre-selected treatment guidance options for your trusted decision maker and doctors. 
  • The COVID-specific advance care planning form was made in partnership with Dr. Atul Gawande's Ariadne Labs and The Conversation Project. This form lets you identify a health care decision maker. But, instead of general, pre-selected treatment options the Trusted Decision Maker offers, it asks in-depth questions about what you'd like to happen if you had COVID-19 and allows you to answer however you'd like.

Once you complete your advance directive, legal will, Trusted Decision Maker Form, and/or the COVID-specific advance care planning form, you can create a Cake profile, upload your documents, and share your profile with someone you trust. They'll have immediate access to your profile and documents, just in case they need them.

After you create a Cake profile, you'll want to place advance directives in a prominent place in the household so that emergency medical personnel can follow your wishes. In some states, the advance directive is not enough to get confidential medical information. You will need to fill out a release of information form as well.

Review advance directives yearly or whenever there is a change in health status. For example, if you were healthy when you filled out your end-of-life wishes, but then your health status worsens, you will want to revisit your advance directives.  You may have changed your thinking about what interventions you are willing to have.

Read more about advance directives here:

Key Things to Consider When Making an Advance Care Plan

Thinking through care preferences and making decisions about them can be overwhelming – here are some key aspects to consider as you or a loved one work on an advance care plan.

Medical and healthcare information

This step is often skipped in the advance planning process, but it is very important. If you have an older parent or grandparent, having this information will expedite planning and reduce stress during a crisis.

Consider this same process for yourself and keep the information organized and current. Include the following components:

  • Medical conditions. Keep a detailed list and description of medical conditions. If you are unsure about certain diagnoses, take a little time to investigate so that you can advocate for yourself or your family member.
  • Medications. Listing medications is the easy part. Knowing what they are treating can take some time to understand. But, not unlike medical conditions, taking the time to know what medications are used for will help you make informed decisions. 
  • Healthcare insurance. Do you know the difference between traditional Medicare and a Medicare advantage plan? Each of these plans works differently and coverage varies depending on the plan. The first step is to make copies of insurance information so you have it available when needed. The next step is to understand what insurance covers and what it doesn’t. For example, Medicare does not cover assisted living. Does your parent have long-term care insurance and if so what is the maximum daily rate and elimination period?
  • Healthcare providers. It is pretty rare these days for someone to have only a primary care provider. Healthcare has become highly specialized with cardiologists, urologists, pulmonologists, dermatologists, neurologists, and many more. Identifying each specialist along with their contact information will help you navigate a loved one’s care or your own. 
  • Preferred hospital. In case of emergency, first responders may take you or your loved one to the closest hospital. If you have a preference, make this known. Healthcare consists of systems and many people prefer to stay within the system that manages their care. The reason? Communication between dissimilar healthcare systems can be fragmented and interfere with good care.

Quality of life

Advance care planning isn’t just about budgets, doctors, and care communities. It is also about the kind of life you want as you age or the quality of life for someone you are taking care of. It is easy to get lost in the day-to-day planning details and lose sight of important values.

These are some questions to ask of yourself or your loved one.

  • What steps can I take to improve my health every day?
  • What are the activities that bring me joy and passion in my life?
  • How do I want the end of my life to look and where do I want to be?
  • How can I stay connected to friends and family in more meaningful ways?

Other Components of a Comprehensive Plan

While hospital care preferences are integral to an advance care plan, it’s a good idea to make plans that cover other aspects of your life, like distributing assets and financing long-term care. Here are some other items that can help you prepare for the future.

A will

Most people are familiar with how to write a will and what it is used for. The purpose of a will is to distribute assets and items to individuals upon death.

Some people prefer to use an attorney to draft a will to make certain it meets the legal requirements of the state in which they live.

Financial power of attorney

Sometimes people get so focused on the healthcare aspect of advance planning that they forget about finances.

Think about the following situations where having a financial power of attorney or trust would be important, like the following:

  • Due to illness or accident, you are unable to manage your assets or pay bills.
  • Dementia or some other cognitive disorder prevents you from managing your estate.
  • Financial exploitation and fraud are huge problems in this country. Some families set up a financial power of attorney or a trust where a family member can take over finances at any time to prevent continued exploitation of the estate.

Also know that your financial power of attorney and healthcare power of attorney do not have to be the same person.

Long-term care planning and finances

Most of us don’t like to think about needing institutional care, but it happens. Long-term care planning and finances go hand in hand because much of long-term care has to be paid for. As you plan, understanding the costs of care will help you budget.

  • In-home care. Most people say they want to remain at home as they age. For this to happen, in-home care of some kind may be necessary. For example, if your parent falls and breaks their arm, they will need someone to help them at home while they recover. You will have to pay for in-home care (unless your family member has long-term care insurance). Services include assistance with bathing, transferring, transportation, shopping, and cooking. Pricing varies across the country, but you can expect to pay on average between $20-$40 an hour if using an agency.
  • Home health care. Home health care is a Medicare-covered, time-limited service where certain criteria must be met to qualify. Home health care includes nursing, physical and occupational therapy, as well as speech and respiratory therapy if needed. The time-limited nature of home health care means that if your loved one requires continued nursing care after discharge from home health, you may have to consider paying privately. 
  • Assisted living. Assisted living is a viable option for many, especially when the cost of in-home care becomes unsustainable. The average cost according to Genworth is about $4000 a month, but costs can far exceed that if more care is needed. Most assisted living communities charge a base rate and then add on costs depending on the level of care needed. Long-term care policies will cover a portion of the daily rate.
  • Memory care. Memory care communities are dedicated to providing specialized care for people with dementia or other cognitive problems. The cost can get very high. 
  • Rehabilitation. Rehab settings are designed to help people recover from illness or injury. The length of time is determined by insurance coverage and progress the patient is making. Generally speaking, once someone is discharged from rehab, they can arrange for home health or home care to continue recovery at home. 
  • Nursing home. Nursing homes are for people who need 24-hour nursing and/or require two people to assist them with transfers. A private room in a nursing home can exceed $8000 a month. This cost will be out of pocket unless you have a long-term care policy or qualify for Medicaid.

It is recommended that you identify communities and companies in each of the above categories. Pick your top three with contact information so that you aren’t trying to make a good decision during a crisis.

Budgeting for the worst-case scenario will give you a very clear picture of where you need to make adjustments. You may want to meet with an estate planning attorney to go over options and costs of future care. 

Advance Care Planning FAQs

Not sure how you can get a planning conversation started? Here are some frequently asked questions about advance care planning.

How do I talk to my family and friends about my wishes?

Although advance care planning conversations can be challenging, know that just having the conversation is an accomplishment. Express your concerns, be specific, and try to be understanding if your loved ones are surprised or need to continue the conversation another time.

As with any other important medical decisions, it is important to also speak with your doctor about your preferences.

Read more about how to get the conversation started here:

How do I get my parents or another loved one to plan?

Taking care of your plans first can be an effective way to encourage a loved one to start their planning. When talking to a loved one about their wishes, it’s important to communicate your concerns, understand if their opinions differ, and offer support as they start to think about and document their preferences.

Read more about how to get the conversation started here:

Advance Care Planning for You and Your Family

Advance planning will take some time, but you can certainly learn along the way. Take comfort in knowing that you care enough about yourself and your family to plan for the future.

This is especially true during the COVID-19 pandemic, a time when everyone should have an advance care plan in place. In fact, Cake's experienced a 100% increase in views of our advance directive forms since last year and a 400% increase in visitors to our advance care planning resources from February to July. And we've found that advance care planning isn't just on older people's minds—a third of Cake's visitors are between the ages of 25 and 34. 

If you're looking for more on advance care planning, read our guide on how to plan for old age and being childless.

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