Advance Care Planning

An advance directive is a written statement that documents your wishes for future medical care in case you are unable to express them later. You can make your wishes known by documenting advance directives such as a living will and healthcare proxy. A primary care doctor or nurse practitioner can talk about your wishes with you and/or your caregiver:

• PREPARE for Your Care: https://prepareforyourcare.org/advance-directive
  PREPARE for Your Care is a resource provided by the Institute for Healthcare Advancement that helps individuals learn about medical decision making, determine their wishes and prepare to make and discuss those decisions with their care team, family and friends. The website contains pamphlets and tools to assist people in decision making, as well as legally binding advance directives in both English and Spanish.
• Five Wishes: https://fivewishes.org/
  Five Wishes, a resource by Aging with Dignity, is a legal advance directive, or living will, written in user-friendly language to assist individuals in thinking about and recording their end-of-life wishes. The resource is meant to help individuals consider all aspects of their potential end-of-life needs, including medical, personal, emotional and spiritual needs, and contemplate how they wish to discuss their wishes with family, friends and medical professionals.
• Code Status: “Code status” refers to the level of resuscitation, including cardiopulmonary resuscitation and other life-saving measures, that you will receive if your breathing or heart stops. When deciding on your code status, you can think about what you would want the medical team to do. Would you want them to do everything they could to resuscitate you, or would you prefer that they do nothing? If you are seriously ill, discussing your preferred code status with your caregiver, family member and healthcare team can be useful. This resource may be helpful:
  https://www.munsonhealthcare.org/media/file/6581.pdf

Understanding Medical Terms

• What Did My Doctor Say?
  The Medical Library Association offers this easy-to-understand medical vocabulary list for patients: https://www.mlanet.org/p/cm/ld/fid=580
• Pronouncing Medical Terms
  The Merck Manual Consumer Version offers a pronunciation guide for thousands of medical terms: https://www.merckmanuals.com/home/pronunciations

Shared Decision-Making Checklist for Patients and Caregivers

We often rely on our doctors to tell us what care we need. But to get the best care, you and your doctor make decisions together. This process is called “shared decision making.” Your doctor shares medical expertise, and you share what you want out of your care. Then you make a decision together. Shared decision making can be especially helpful in palliative care. That’s a type of care meant to provide comfort to a patient with a serious, chronic illness whose quality of life has decreased as a result of the illness. Read our FH^® Insurance Basics article on palliative care and shared decision making.

If your healthcare team has not spoken about shared decision making, you can still engage in the process. Refer to this checklist to start the shared decision-making conversation. Download, print and bring this with you to appointments.

Before Your Appointment/Discussion: Think about What Matters to You and Write it Down

• What would you like to ask and know about your condition and treatment options?
• What matters most to you in life? What are your goals for treatment—for example, to manage symptoms or to be able to do things you are currently unable to do? Think about your goals for treatment, what matters to you. A nurse, social worker or primary care provider may also be able to help you discuss your goals and wishes.
• Is cost an important part of your decision?
• If a caregiver or family member is involved in your care, does he or she know your goals and wishes? If not, discuss them.
• Refer to advance care planning resources.

During Your Appointment/Discussion: Ask Questions; Express Your Goals and What Matters to You

• I would like to make this decision together with you based on my goals and what matters most to me and on your expertise.
  
  • What I would like most from life is…
  • What matters most to me is…
  • What I am most afraid of is…
  • Are there decision tools we can use to make this decision together?
  • How can I learn more about my condition and my options?
• What are my options for treatment?
• What are the benefits of the options?
• What are the risks to me if I choose this option?
• What if I don’t want to do anything?
• I understand it could be helpful to let you know about my advance care plans and code status. I would like to discuss that with you.
• What are the costs associated with each of the options? Whom can I speak with to learn more about the treatment and how I can pay for them?
• For my specific goals and condition, what would be my best options?
• I don’t understand. Can you explain this to me a different way?
• Can I contact you with questions?
• Can you give this information to me in writing?
• What are the next steps?

After Your Appointment

• Keep the notes in a handy place so that you can refer to them later.
• If you are unclear on next steps, ask!
• If you need more time to make a decision, let your caregiver and healthcare team know.

References:
• 1. AHRQ SHARE Approach to Shared Decision Making
• 2. AHRQ, Using the Teach-Back Technique: A Reference Guide for Health Care Providers
• 3. AHRQ, Communicating Numbers to Your Patients: A Reference Guide for Health Care Providers
• 4. Glyn Elwyn et al., “A Three-Talk Model for Shared Decision Making: Multistage Consultation Process,” BMJ 359 (November 2017): j4891, https://doi.org/10.1136/bmj.j4891.