The topic nobody wants to talk about
End-of-life. Just say the words, and for most people, it’s the end of conversation! In 2013, The Conversation Project, an organization dedicated to helping people talk about their wishes for end-of-life care, conducted a national survey. They found that more than 90% of people think it’s important to talk about their loved one’s and their own wishes for end-of life care; however, only 27% had actually had a conversation to communicate about end-of-life wishes.
What is advance care planning?
Advance care planning is the process of considering, discussing, and making decisions about future medical care. Through careful and thoughtful planning you make your wishes for your own medical care known. Then if you’re involved in a serious medical situation during which you are incapable of expressing your wishes, your loved ones will know exactly what you want. Advance care planning is an ongoing, dynamic process, and your decisions can change over time.
In order for health professionals to adhere to those wishes, they must be documented. An advance directive is a document that describes these wishes in writing.
Why is advance care planning so important?
Advance care planning allows every individual some control over their medical care, even when they are unable to participate in decisions during a crisis. It ensures that medical providers will be made aware of your wishes, in terms of pain and symptom management, and helps to avoid any unwanted prolongation of dying. When you involve your loved ones in advance care planning, it improves communication between family members and between patients and providers. It helps to relieve family burden by taking the onus off of the family to imagine what your wishes may have been. Advance care planning offers individuals a sense of empowerment and respects the uniqueness of each person, including spiritual and cultural beliefs.
What is a health-care proxy?
As part of the process, it is essential to select a health-care proxy (also referred to as a health-care agent). This is a person who can speak on your behalf and make health-care decisions when you are unable to do so.
When choosing a health-care proxy, it is important to ask yourself, “Will this person be able to remain objective and represent my wishes in a time of crisis?” The person you select should be able to make decisions based on your wishes, not their own wishes for you. Assigning a health-care proxy is especially essential for Solo Moms. In many states, there are laws that determine who can make decisions for you if you are unable to make them yourself. Without a designated health-care proxy, someone you may not have selected to make decisions on your behalf may be called on to do so by law.
What decisions should be made in advance?
The main issue is the degree of medical intervention you would choose in a life-threatening medical event. For example, you can determine now whether you would want to have CPR performed and whether you’d want artificial breathing apparatus or artificial feeding and hydration. You have the right to state your wishes and have those wishes respected by the medical professionals caring for you. In fact the Patient Self-Determination Act, passed in 1991, is a federal statute that protects this right. It is important to note that without written advance directives, a medical provider’s default is to treat.
A healthy, younger person might be thinking, “Heck yeah, I’d want CPR!” Especially a Solo Mom who knows that she better stick around for her kids. But when it comes to our aging loved ones or those with terminal illnesses, wishes for medical treatment quickly change. For many people, quality of life becomes the priority over quantity, and the focus shifts to palliative from curative treatment options. Educating yourself about the realities of life-prolonging intervention (such as statistics about success rates) can help you make informed decisions for yourself and allow you to help a loved one make the same decisions for herself.
How do I prepare for the conversation?
So, if advance care planning is so important and beneficial, why do most of us avoid the conversation? Many people fear that doctors won’t help them when they are sick or hurt, and people worry that later, when it really comes down to it, they’ll change their minds. Others fear that their families will not be able to see their wishes through. Many people simply feel that the conversation about advance care planning is too difficult and worry that their loved ones won’t want to talk about it. Many people tell themselves they are too young to think about it and are convinced that it won’t happen to them.
In order to get the conversation started, it is helpful to ask yourself some of the tough questions. How do you feel about death and dying? Do you believe that accepting mortality is giving up hope? Are you afraid that making decisions about end of life care will make “it” happen? Do you understand the terminology? Are you clear on what it is you’re making decisions about? Where do you find the information you need to make informed decisions?
Next, prepare to dig even deeper. Begin to examine your own values and cultural beliefs. What have your experiences been with death and dying? How do those experiences inform your own feelings about what you would want if you became seriously ill? What are your spiritual or religious beliefs in regard to death and dying? What does “quality of life” mean to you? What activities, experiences, or symbols give your life meaning and allow you to “live well”? What would you be willing to live without? What would you not want to live without?
The questions go on and on. Certified advance care planning facilitators are trained professionals who can help to facilitate this conversation and help people go through the process of planning and documenting wishes.
How do I start the conversation?
To begin, ask yourself:
- Who? Who do I want to speak with about my wishes?
- What? What are the wishes/decisions I will be speaking about? What are three important things I’d like to convey?
- Where? Where will with this conversation take place?
- Why? Why is important to me to have this conversation now?
- When? When is a good time to get the conversation started?
What do I need to make sure to cover?
Determining and documenting your wishes for medical care in a serious medical situation isn’t an easy thing to do. In order to give yourself a head start, do some legwork. These five steps are a good way to begin:
- Think about it.
- Talk about it with your doctor, an advance care planning facilitator, or a trusted confidant.
- Start the conversation with your loved ones.
- Identify your health-care proxy. Make sure this person is willing to take on this role and is clear about your wishes.
- Put your decisions in writing. Understand the terminology and how to utilize the documents. Remember that you can change your documents at any time.
There are several wonderful guides and resources for getting the conversation started. The following website provides online documents for advance care planning for every state.
For more information on advance care planning check out: Respecting Choices Advance Care Planning at Gundersen Health System, the Conversation Project, Compassion and Choices, and Aging with Dignity.
Image via Shutterstock.com
Allison Gould, ESME’s Caregiving Resource Guide, is a licensed clinical social worker. For many years, her work focused on adolescents and their families. She currently provides outpatient counseling services to people aged 65 and older, as well as to their caregivers, at the Center for Healthy Aging at Northern Dutchess Hospital in Rhinebeck, New York.
Please feel free to contact us with any comments or questions.