Here in Your Life Your Wishes, you will find a helpful tool created by The Conversation Project to use when outlining your advance care plan. This resource helps you map out your thoughts, write down ideas, and designate someone you trust to ensure that your health goals, values and preferences will be known and your decisions will be honored.
Because your health status, lifestyle, relationships, and perspectives are constantly evolving, "The Conversation" is an ongoing series of discussions that enable you to update and communicate your health goals and preferences as your life and circumstances change.
Your first conversation can start with the people who know you best, care about you most and will ensure that your values and preferences inform the care you receive. These people should include your family and close friends, primary care physician and others whose judgment you trust, such as your spiritual, financial and legal advisors.
The more you talk about your health goals, the more comfortable and confident you and those in your support network will become in making decisions that reflect your goals, values and preferences. These conversations will empower not only you, but also your conversation partners to ensure that you receive the care that is right for you.
Beginning the Advance Care Plan Conversation:
Define Your Mission–taking control of your health care future. Develop an understanding of your health and care needs. Your doctor can help you better understand your current health status and anticipate the general course of health needs you can expect. In turn, your doctor and family would likely find it helpful to know the quality of life you would find acceptable, including the level of comfort and function you value based on your health status.
Outline Your Plan, including alternatives and questions. Think about your life now and how you might adapt if things were to change. For example, where would you prefer living if you needed help with daily care: in your home, with other family or in an assisted living facility? Will your resources accommodate your plan? It’s OK to not have all the answers, but it’s important to start asking the questions and considering what matters most to you. Remember, your plan is flexible so it can change as your health needs and interests change.
Set the Stage. Once you've identified the person(s) you want to include in your first conversation, decide on the best time, location, and way to introduce the topic. Some people respond well when talking over dinner, others prefer when no one else is around. It is up to you to determine the best way to begin the conversation, depending on what would make you and the other person(s) most comfortable. Your Life Your Wishes contains helpful suggestions for introducing these topics in ways that will engage the people you choose and make the conversations productive.
Rally Your Team. Perhaps the most important thing you can do right now is choose and appoint a person to make medical decisions on your behalf in the event you are even temporarily unable to make these decisions yourself. You may consider appointing two people in case your appointed person is unavailable in the event decisions need to be made on your behalf. In making these selections, consider these questions:
Who knows what matters most to you, including your health goals, values and preferences?
Who can you trust to work with your health care providers to make decisions that respond to your medical needs and your wishes?
Who can you depend on to make difficult decisions and deal with sensitive situations?
Share and Accomplish. Present the conversation as an opportunity to share information, ask and answer questions. You are providing your thoughts, feelings, concerns and hopes so that others better understand your goals and their part in helping you achieve them. In return, you are encouraging them to do the same and offering to be part of their support network.
Additional Things to Consider:
Advance care planning refers specifically to your health care, but you may also want to consider other separate but related types of planning. While your primary health care provider is the person with whom you should discuss advance care planning, other members of your team—your estate planning attorney, your financial advisor, and/or your spiritual advisor—can provide valuable guidance in their particular areas of expertise.
What is your monthly income? Does this income come from a paycheck issued by your workplace, or is it a check issued by social security?
Do you have financial statements from the last five years? Have you set aside any money to pay for nursing home or long-term care expenses?
Would your family be able to support these forms of care if you could not?
Would your family be able to take care of you if you suddenly became sick?
Are you aware of any significant debts in your name? (These would include: student debt, foreclosure, health care, lawsuits, divorce, etc.) How do you plan to pay them off?
Are your loved ones aware of these debts?
Do you have an updated list of information? For example: contacts, medications, bank account(s) information, joint owners of any accounts. Who holds a copy of this list?
Have you looked at any funeral homes in your area? Do you know costs associated with them?
Do you or your family feel comfortable with the setting and staff of the funeral home?
Does the funeral home offer any types of special services?
Who do you want your estate to go to when you pass?
Have you discussed estate planning with your loved ones and a lawyer?
Supportive Care Services
If you were in need of 24-hour or long-term care, would you like to be placed in a nursing home or receive in-home care?
If you were given a terminal diagnosis, would you want hospice care? In-home care or facility care?
Would you like to be placed in a nursing home?
If choosing a nursing home, who lives nearby? Who will sign for you for a nursing home if you are unable to? (via power of attorney)
What is the policy on visitation?
Is there a waiting period for admission? What does the waitlist look like? Long, short?
Is the facility accepting new patients?
Does the facility or caregiver have background checks on all employees?
Do residents get the same caregiver on a daily basis?
Would the caregiver take you to the store? The pharmacy? A loved one’s home? Appointments?
What types of activities will your caregiver be able to provide? (i.e. – cooking, cleaning, etc.)
What happens in the event of inclement weather or an emergency? Does the caregiver still come to the house?
Does the nursing home provide cultural or spiritual needs?
Is there a recreation area for residents?
Are residents allowed to make choices about their meals, routine, etc.?
How does the staff interact with caregivers?
How long does it typically take staff to respond to call bells?
Are there recreational activities provided by staff?
What is your family’s medical history?
Do you have any medical problems of your own?
Do you have a recent copy of your records?
If you have a spouse or partner, what is the condition of their health?
Are there any medical procedures you foresee needing?
Who will take care of you if you are unable to after a procedure?