EMBED THIS GUIDE »
Guide Advance Care Planning
|Keys to Advance Care Planning
||Steps to Advance Care Planning
||Discussing Difficult Topics
||For More Information
"I just hope that I make the right choice. I don't know. I really don't know." --Julia Romero
Robert Bernadini, who has been living in a nursing home for two years as a result of a massive stroke, is now hospitalized with pneumonia, which led to cardiac arrest and resuscitation. He has been on the ventilator in the ICU for more than a week, and he is unable to voice his care preferences. His wife, Julia Romero, now faces tough decisions about the type of care she thinks Robert may want. Watch the video and explore more resources on the benefits to patients and families of advance care planning.
People with serious illness may find themselves in a vulnerable position, where they may not be able to choose between different care options. Advance care planning can help you maintain a voice in your care, even if you become incapacitated and become unable to make decisions for yourself. Advance care planning can also be of great benefit to your doctors and your loved ones when they are faced with making medical decisions for you. Such planning is an opportunity for you to express your wishes and treatment preferences and to examine your values and how you want to live your life. The process can be complicated, and it may include writing down advance directives, such as living wills or durable powers of attorney, and designating a health care proxy.
Keys to Advance Care Planning
Tell important people around you two things: who should make decisions for you when you cannot and what sorts of decisions you prefer. Bud Hammes, clinical ethicist for Gundersen Lutheran Medical Foundation in La Crosse, Wis., advises a three-step approach to what can be a complicated process involving various legal, medical and financial decisions. He advises that you start with basic planning when you are healthy; reconsider those plans when you are diagnosed with a serious, progressive illness; and become more specific and precise about your wishes as you realize that you may be in the final stages of your illness. This approach, he says, "lets you know what you are deciding, lets your family know what you want and lets your physicians know what to do."
- All stages of planning require thoughtful, deliberate conversations with your family and friends and your health care team. Talk about your values and any deeply held beliefs or practices that might affect your care decisions. What quality of life do you want to have? What can you live with, or without, and how can your treatment help you to reach those goals?
- From the basic planning stages, when you choose a health care spokesperson, to the final stages, when you decide on very specific treatments, your wishes and goals may change. Periodic conversations with your doctor and family will keep everyone current about your medical situation and will also keep them up to date on what you are thinking regarding your care and treatment goals.
- As your understanding of your experience with your illness evolves, you can always revisit, reconsider and revise your advance plans and directives
- Everyone (family, loved ones, health care team) MUST know who you have chosen to make your decisions for you as your health care proxy (also known as a durable power of attorney for health care) and know where to find your advance directive (which names your proxy and expresses your wishes). It is critical to have your advance directive readily available, not locked up in a safe deposit box.
Downloadable Resource: Keys to Advance Care Planning (PDF)
Steps to Advance Care Planning
Although you will want to have these conversations with your family, it is just as important to have them with your doctor and other clinicians, too. There are some key issues to explore and discuss, both when you are healthy and when you are sick with a worsening condition. Some of these steps will constitute who is legally responsible for deciding your care, so there are many considerations and complicated approaches:
- Learn about advance directives. Advance directives help you state your choices for receiving medical care in advance of a serious illness or a health crisis. There are many legal considerations when formalizing advance directives. Many online resources provide information about advance directives. Each state has its own form of advance directive, which you can download. Your hospice or hospital will have information, too.
- Designate a health care proxy and complete a living will by choosing the right health care spokesperson and sharing your values, beliefs and what is important to you in conversations with your spokesperson, your family and your health care team.
- Discuss your care preferences and remove barriers to talking about plans for living with illness. These are difficult conversations, and it is easy to make excuses for avoiding them. There may be informational or emotional reasons behind your reluctance; think about what is going on, and then try to move forward. Have the conversation before the crisis.
- Review and update advance directives periodically, both in conversations with your spokesperson and doctor AND in writing. This is especially important when major health and life events affect your decisions or your ability to make or express decisions.
Discussing Difficult Topics With Your Family and Your Doctor
Opening a family conversation around the difficult topic of advance care planning may prove challenging for those with serious illnesses and their family members. Storytelling can often be an effective way to open a conversation. Draw from personal experiences of a friend who has recently died, or from stories in the news about illness or funerals or other current events. You can also begin "what if" conversations: What if I become incapacitated? What if I cannot recognize family and friends or cannot relate to them? What if I can no longer breathe on my own? From there you can begin conversations that focus on your care preferences.
Questions to Begin the Conversation
- How do I define quality of life? What do phrases such as "medical intervention," "life support" or "death with dignity" mean to me?
- What do I understand, and what questions do I have about my condition, prognosis and options for care?
- To whom do I want to communicate my wishes for my care if I am unable to do so?
- How important is it to maintain my independence? What resources are available if I need care?
- What would I want done -- or not done -- if could I no longer eat, drink, breathe, communicate, make decisions, take care of myself, take care of people I love or live independently?
- Where do I want to receive care? Where do I want to live out my final days -- at home, in a hospital, in a hospice or in a nursing home? What kind of care will I receive in each facility?
- What are my greatest hopes and greatest fears for the end of my life? What would be hardest for me to lose during the dying process?
- What cultural and spiritual values and practices are important to me? How do these influence my choices regarding end of life?
Downloadable Resource: Discussing Difficult Topics (PDF)
Choosing a Health Care Proxy
Defining your hopes, wishes and care preferences broadly will help your family, friends and health care proxy to make decisions based on your preferences. Choose a health care proxy or spokesperson who:
- Meets any criteria the law in your state require (you can find this out from professional associations, your local hospital, an Area Agency on Aging, your doctor or a lawyer)
- Is willing to take on the responsibility
- Is willing to talk to you and to honor your wishes
- Can make complex and difficult medical decisions even under great stress
What to Discuss With Your Doctor
Although you will want to have these conversations with your family, it is just as important to have them with your doctor and other clinicians, too. There are some key issues to explore and discuss, both when you are healthy and also when you are sick with a worsening condition.
- Do you know what your course is likely to be and what complications are likely to arise?
- Do you know what kinds of treatment you are willing to undergo and which you would rather turn down?
- Does your doctor know how you feel? Does your doctor have any experience providing services in the home, and do you need a good hospice or home care program to help?
In some states, doctors assist you in your advance care planning by completing a form known as a POLST (Physician Orders for Life-Sustaining Treatment) or MOLST (Medical Orders for Life Sustaining Treatment), both of which spell out specific treatments and comfort measures and whether or not a patient wants them. These forms are intended for use with seriously ill patients who have advanced disease and provide a way to put some of your most urgent plans into a doctor's order. The order is prominently displayed in your medical records and follows you from one health care setting to another. Keep a copy at home to inform emergency medical services if they are called.
Although we engage in careful and thoughtful advance care planning, it is important to recognize that our wishes may change over time especially when we are faced with the reality of making end-of-life decisions.
For More Information
- Caring Connections
The National Hospice and Palliative Care Organization provides free advance directives and instructions for each state. You can also download the American Bar Association's Commission on Law and Aging resource Legal Guide for the Seriously Ill (PDF).
- Community Conversations on Compassionate Care (CCCC)
The CCCC program focuses on Five Easy Steps to complete a health care proxy, as outlined in its Advance Care Planning booklet, videos and "Five Easy Steps." The videos are based on successful CCCC workshops conducted with patients and families across upstate New York and with employees at Excellus BlueCross BlueShield.
- Ethical Wills
A way for you to share your values, life lessons, hopes and dreams with your family members. Free resources for writing an ethical will are available online.
- National Association of Social Workers' "Help Starts Here"
NASW's consumer website offers advice and information on advance care planning and end-of-life care.
- POLST Paradigm
This site provides guidance for states seeking to implement POLST, as well as information for patients and families about the POLST form.
- Put It in Writing
The American Hospital Association (AHA) provides resources, including a wallet ID that alerts health care workers that patients have talked to their family about advance directives and provides contact names and numbers. Simply print the card, fill it out and carry it in your wallet.
- Respecting Choices
A training program for health care professionals to assist organizations, communities and individuals in implementing advance care planning practices that support informed health care decisions.
- Take Charge of Your Life
A Pennsylvania-based program with general information on caregiving, advance care planning and end-of-life issues, including a toolkit for those interested in starting a communitywide dialogue.