A Guide to Advance Care Planning: How to Get Started

This is part of Cake's collection of Advance care planning articles. Create a Cake profile for free to discover, document, and share your end-of-life wishes.

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

Published on:

Planning for the possibility that you may need some care at some point in your life can feel tricky, no matter how old you are. You could need care in your 30s, in your 90s, or anywhere in between.

Despite how healthy or cognitively attune 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, but that’s why care planning can be done at any age. 

Jump ahead to these sections:

Thankfully, care planning is a flexible process subject to change. The most critical part of care planning is having an advance directive, which we talk about in more detail in this article.

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 Does Advance Care Planning Mean?

Advance care planning means putting a plan in place should you anticipate any change in your health status.

That can be very difficult to think about, especially if you are healthy now. This is one reason so few people take the time to do advance planning, as it means facing an unpleasant scenario that they may not think will happen to them.

What’s the Purpose of Advance Care Planning?

Think of advance care planning like having an insurance policy. You have home and car insurance hoping you won’t need it, but having it can help alleviate any stress by knowing that you will be covered if disaster strikes. Advance care planning is the same, like your own insurance policy for future care needs.

How to Start Advance Care Planning: 6 Components

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

1. Advance directives

Without legal authority, you will not be able to access your family member’s healthcare providers or get information about their care. In some states, the healthcare power of attorney only requires everyone’s signatures. Understanding the glossary of terms will help you sort out the differences between states and what is required.

  • Advance directives name someone to manage and make decisions on your behalf should you be unable to do so. Choose this person carefully since they will be responsible for carrying out your wishes.
  • A living will specifies the end of life care you want. This information is sometimes included in the advance directive form, but other times it is not. It is important to make decisions about resuscitation, feeding tubes, and intubation if you have little hope of returning 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 important or do you prefer to be alert? Where do you want to be and who do you want caring for you?

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.

All healthcare providers and family members need a copy of the advance directives. 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.

2. 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.

3. 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.

4. 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.

5. 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 for the future, 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. 

6.  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?

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.

By engaging in planning for any potential scenario in the future, you can reduce stress for your loved ones and be comforted knowing that you have chosen what feels right for you.


Sources

  1. “Cost of Care Survey.” Genworth. www.genworth.com/aging-and-you/finances/cost-of-care.html