Advance Care Planning

The State of Advance Care Planning in the United States

• A study found that 36.7% of adults had an advanced directive of some kind; 29% had living wills, and 33% had a health care proxy (Yadav, et.al., 2017)
• 56% have not communicated their end-of-life wishes.
• 80% of people say that if seriously ill, they would want to talk to their doctor about end-of-life care.
• 7% report having had an end-of-life conversation with their doctor.
• Medicare allows health care providers to bill, every year for discussions with patients about advance care planning.

What does advance care planning mean?

• Advanced care planning is a process of planning for your future medical care.
• It focuses on the clarification of each patient's personal values and goals at the end of life.
• Advanced care planning typically includes a living will and a health care proxy/surrogate or power of attorney.
• The documents you complete outline your wishes if someone else must make medical decisions on your behalf.

Why is advance care planning important?

It is important that our wishes for medical care are known and executed the way in which we would like them to be.

• Would you want care that would prolong your life, but make us dependent on machines to help us breathe or medications to keep our hearts beating?
• Who would you want to make medical decisions for you in the case you couldn't make them for yourself? 
• Perhaps even more important is, is there anyone who should NOT be involved in medical decision making?

What documents do I need to complete?

• It is especially important that people put their wishes in writing by completing an advance directive. This involves two components:
  • Living will - is an instruction for your medical care. This includes wishes for what medical procedures/measures and directives on interventions to pursue or not pursue in specific healthcare scenarios. This can include things like CPR, mechanical ventilation, antibiotics, dialysis, and nutrition/hydration support.
  • Healthcare proxy - the selection of your durable power of attorney or healthcare surrogate who would make medical decisions on your behalf if/when you are no longer able (incapacitated).
• Remember, an advance directive is for healthcare decisions ONLY. You can read more about financial power of attorney here.
• Check your state's requirements on rules for notarizing and obtaining witness signatures on the document.
• State-specific documents are available through Caring Connections.

What topics should I discuss with my family and healthcare team?

• End-of-life physical care needs - Express any preferences to die at home, hospital, nursing home, and to be with family, paid caregivers, or alone.
• Funeral plans and wishes such as burial, cremation, organ donation, or body donation to science.
• Any other personal feelings of unfinished business or need for life closure.
• You may also need to address legal and financial matters, which could include preparing wills, assigning co-signers to bank accounts, guardianship arrangements, etc.

Are there tools that can help me initiate these discussions with my family and healthcare team?

• These conversations can be difficult. People may think it feels morbid or is bad luck to talk about end-of-life, but having these discussions when you are physically and mentally able will take the stress of making decisions off your family when they are needed.
• It can be difficult to find the right words but is important to have open communication with your family and healthcare team so that everyone understands your wishes.
• Utilize your oncology social worker or nurse navigator to assist you in initiating these challenging conversations and accessing necessary paperwork like advance directives.
• These resources are useful in helping you think about your wishes for your care:
  • The Conversation Project - Starter Kit
  • PREPARE
  • Advanced Care Planning Canada

When does an advanced directive come into play?

• When your healthcare provider believes you have a terminal condition, you are in a state of permanent unconsciousness or persistent vegetative state that is irreversible and without a chance of meaningful recovery.
• If you were unable to make decisions because of cognitive or mental decline, your healthcare surrogate or proxy would make your healthcare decisions. Your living will can provide guidance for this person regarding your wishes.

This of completing your advanced directives as an opportunity, not a chore. In the end, your wishes will be honored and your loved ones will be less stressed.