Advance Care Planning Guide

What is advance care planning? It is an ongoing process of preparation that adults use to identify what matters most to them when they consider their future health, dignity, and quality of life. Advance care planning requires a person to thoughtfully evaluate their goals, values, and beliefs and use these preferences to determine and document the type of medical and end-of-life care they wish to receive in the future. Because it is a process, you can revisit your advance care plans and make changes to them as your situation or experiences change — or simply if you change your mind.

If you are a caregiver, you may be familiar with advance care planning if you’ve helped a loved one document their wishes or helped see these wishes through. But how much thought have you given to your own future care needs? Advance care planning is not just for so-called “old people.” Accidents or serious, debilitating illnesses can happen to any one of us at any time, so it’s best to start planning now. It’s never too early to start. Even putting together a first draft of advance care plans should bring some relief. lt’s nice to know that there’s documentation in place that conveys our wishes in the event we are unable to do so.

What are the first steps in developing an advance care plan?

I would suggest doing some reflection on what you want your life to look like should you become impacted by a serious accident or life-changing illness. Think about what matters most to you by answering these questions:

  • What gives your life meaning?
  • What brings you joy?
  • What do you do for fun?
  • What can’t you imagine living without?
  • Who would you trust to speak for you if you could no longer speak for yourself?

After you have considered the answers to some of these questions, it’s time to start having conversations with your loved ones and making your wishes known. That way they are prepared to respect and honor your wishes. Furthermore, making it clear in advance what you want prevents (or at least limits) possible disputes between family members about your care.

The next step, after verbally communicating your wishes, is to look at what resources are available in your area that support what you’ve come up with for your future health considerations. Health authorities, social agencies, and social workers are great resources for this information. Online research is also helpful at this stage. Google keywords like home care or living at home with support, assisted living, residential care, independent living, hiring health care providers, or transportation options.

Have you recently received a medical diagnosis?

If you’re a family caregiver, a personal medical condition or diagnosis can have repercussions on your care recipient and will require an added dimension to your advance care planning. Not only will you need to do as much research as you can for your own understanding of your newly diagnosed condition — about what treatment options would be consistent with your wishes — you will also need to consider how this will impact your ability to continue to provide care. Perhaps there will be times you are unable to perform caregiving duties and you will need to appoint someone to step into your role. Perhaps you will need a caregiver yourself. With many “what ifs” it can be difficult to plan concretely, but it is helpful to give these possible scenarios some consideration and planning.

If you find resources are lacking in your community while researching your condition, now is a good time to advocate for improvements to the options for health care. If your wish is to remain at home, make sure your home environment is safe. Fix those broken door hinges or uneven floor boards while you are still well enough to do so. It is best to be prepared and keep your family and friends updated about your health condition.

What is a health care proxy, and why do I need one?

Advance care planning should also include assembling your personal care team. Which friends and family would have your back in the event of illness or a crisis? Once you’ve made this list, identify the person you trust the most and ask them to be your health care proxy. A health care proxy, also referred to as substitute decision maker (SDM) or representative, is a legally designated person a medical team will communicate with when/if you are not able to. If you regain your ability to speak for yourself, medical staff will resume communicating with you directly. In selecting your health care proxy, consider choosing someone who knows your current health issues, has the confidence and skill to speak to doctors and healthcare providers, and is able to remain calm in crisis.

What forms do I need to document my advance care plans?

Once you’ve had the preliminary conversations recommended above, it’s time to put down in writing the critical services and support you may need. First, make sure to have your legal and financial matters in order. Do you have a will?

When a person dies without a will, the distribution of their estate — which includes their assets and things they’ve worked very hard to accumulate to pass along to their children or other beneficiaries — will be decided by the state or governmental law. Assets may not be doled out the way they would have wanted. Having a will gives you control to say who is to receive that favorite necklace of yours or that antique carpentry tool your father always used. Perhaps it’s really important that some of your money goes to your favorite charity. Without a will to express your wishes, these specifics (or specific designations) won’t happen. It also provides a tangible outline for the family and friends who may have been important to you while you were alive to know your wishes and (hopefully) prevent hard feelings when someone wanted something of yours but it was left to someone else.

It's also beneficial to have a power of attorney and an advance directive. Power of attorney is a legal document that gives one or more people the power to make financial and legal decisions on your behalf. An advance directive is a legal document that specifies your preferences for medical treatment and care if you are no longer able to express them. These documents go by many different names in different States and Provinces. Some of the advance directives you may hear about are health care proxy, durable power of attorney, living wills, DNR (do not resuscitate orders), five wishes, personal directives, and health care directives.

Advance directives are crucial as they inform medical professionals and your caregivers how and what treatment to provide if you’re terminally ill, injured, comatose, have late-stage dementia, or are nearing the end of your life. They go into effect when you are no longer able to communicate. Have discussions with your doctor so that your wishes pertaining to accepting or refusing health care treatments are written up as a medical order in the Medical Orders Scope of Treatment (MOST), Physician Orders for Life-Sustaining Treatment (POLST), or Medical Orders for Life-Sustaining Treatment (MOLST) — depending on where you live.

Advance care planning requires some careful preparation, yet by being prepared you make sure your wishes will be carried out the way you want them. You also simplify the level of decision-making required by your family. They will appreciate your forethought. Once you have your documentation drawn up, make sure to let key decision-makers know where you keep the originals and consider distributing copies to those who are involved in your health care: Your physician, your health care proxy, your family members, and your lawyer. It is helpful to include information about your life insurance policy and funeral arrangements alongside these documents.

You may feel comfortable consulting with a reputable attorney or elder law attorney (for those of you who are advancing in years) to help with your planning. If you can’t afford to pay for legal advice, there are options available for non-profit legal and even gratis services. By doing online research, or contacting a social worker, Area Agency on Aging or the Alzheimer’s Society, you may find affordable options to help with your advance care or estate planning needs.

The most important piece here is to take the first step and start thinking about your care wishes and how you plan to share these wishes with others. Advance care planning is both an act of self-care and a gift we give to those who care about us. Your efforts now will help ensure that your future health care aligns with your wishes while simultaneously preventing family members from disagreeing with each other if they are put in a position to make a life-saving decision on your behalf. Don’t miss the opportunity to make your wishes known and your voice heard while you’re still well enough to do so.