Many people put off discussing — or thinking about — advance care planning and long-term goals of care for themselves or their loved ones. This topic may seem scary or uncomfortable, but starting conversations early, while you or a loved one are still in good health and able to make thoughtful decisions, is crucial.
What is advance care planning?
Advance care planning is the process of deciding and documenting what level of care you want to receive if you are unable to communicate your wishes or make decisions about your care because of injury or illness. The process involves identifying who you want (and do not want) to make healthcare decisions on your behalf, and putting those choices in writing through a document called an advance directive.
An advance directive, properly signed and witnessed, is a legal document that outlines your healthcare wishes, including instructions for your care at the end of life. By completing an advance directive, you can ensure that your loved ones know and can share your wishes in the event of illness, injury, or other unexpected circumstances in which you are unable to advocate for yourself.
While advance care planning has traditionally focused on older adults or those in cognitive decline, it’s an important tool for people of all ages, especially those with chronic or progressive illnesses or disabilities. CVHHH recommends that everyone over the age of 18 complete an advance directive.
Planning ahead not only ensures that your healthcare wishes and preferences will be respected, but it also reduces the likelihood of confusion, disagreements, or stress among family members and caregivers who may otherwise be asked to make difficult decisions on your behalf.
What happens if I do not have an advance directive?
Many people assume that their spouse, partner, or next of kin will automatically make the right healthcare decisions for them. However, this is not always the case. Disagreements among family members, domestic partners, or even healthcare providers can lead to decisions that may not align with your wishes. This is why it’s so important to designate a health care agent and complete an advance directive.
What is a health care agent, and how do I choose one?
A health care agent is someone who knows you well, understands your healthcare and end-of-life wishes, and is willing to advocate for you when the time comes. Your health care agent could be your spouse or partner, a child, or a trusted friend. By appointing one and completing an advance directive, you relieve your loved ones of the burden of making tough decisions without your input. You’ll also have peace of mind knowing that your wishes are documented and communicated. Please note that your healthcare provider cannot be your health care agent.
What if I don’t have someone to name as a health care agent?
That’s okay, there is no requirement to appoint a health care agent in order to complete an advance directive. If you don’t have someone you trust to serve as your health care agent, draw a line through that section of the form so that anyone looking at your document knows that you intentionally are not naming anyone. Then complete the rest of the document with as much detail as possible. Listing people (friends, neighbors, your health care providers, etc.) who know you well can be important even though they will not be your decision-maker(s). They can be sources of rich data to help the health care team learn more about you: what you enjoy, how you live, and how you’ve approached health care decisions in the past. You can also include detailed information about your values, priorities surrounding your health, thoughts about hospitalization, views on functional and cognitive limitations, and end-of-life goals. The medical team will use what you have written in your document to inform the plan of care if you are unable to participate in decision-making on your own behalf.
Does my doctor or healthcare provider have to honor my advance directive?
Yes. If your advance directive is properly signed and witnessed, your physician is legally required to follow your wishes to the best of their ability. If a physician disagrees with your directives, they must help you find another physician who is willing to honor your instructions. This applies to all healthcare professionals involved in your care.
Do I need to get my advance directive notarized?
No. You do not need a notary or a lawyer to complete an advance directive. If it is properly signed and witnessed, it is valid. You can access and download all the necessary forms for creating an advance directive from the Vermont Ethics Network for free.
Who should have a copy of my advance directive?
Your signed and witnessed advance directive should be shared with:
- Your designated health care agent
- Close family and friends
- Your primary care physician
Additionally, you should send a copy to the Vermont Advance Directive Registry, a secure database accessible by authorized healthcare providers and facilities when needed.
How do I know what kind of health or end-of-life care I want?
Sometimes, knowing what you want begins with knowing what you do not want. For many people, quality of life takes precedence over quantity of life. Your advance directive can specify when or if you want to be resuscitated, placed on a ventilator, or kept alive by artificial means, such as feeding tubes or antibiotics. It can also include your wishes for organ donation and funeral plans.
Those with life-limiting illnesses should also complete a Clinician Orders for Life-Sustaining Treatment (COLST) form. COLST orders are specific and portable medical orders that are used to instruct treatment by medical providers. You and your physician can discuss what treatment limitations make sense to you based on your current medical condition and your goals and values.
What should I consider before writing an advance directive?
- Who do I trust to carry out my healthcare wishes?
- Where would I prefer to die (e.g., at home, in a hospital, etc.)?
- How do I want to die? (e.g., medicated, awake, surrounded by loved ones)
- Do I value quantity or quality of life?
- What are my non-negotiables — what do I absolutely not want?
- What interventions (e.g., breathing machines, feeding tubes) are unacceptable to me?
- In what situations would dying be preferable to living?
- Are there individuals I do not want involved in my care?
Here are five steps to create your Advance Care Plan:
- Discuss: Begin the conversation with your family, friends, and caregivers. If you’re doing this for a loved one, ask them who they’d like to involve in the process. Then choose a health care agent.
- Notify: Confirm with your health care agent that they are willing to carry out your wishes, even if those wishes conflict with their own preferences.
- Document: Complete the required forms, such as the Advance Directive and the COLST/DNR forms. These can be found on the Vermont Ethics Network website.
- Share: Distribute copies of your advance directive to your health care agent, family, physician, local hospital, EMS, assisted living facility, and any other relevant caregivers.
- Revisit: Regularly review your documents as your health or preferences change. Update your family and health care agent on any changes.
Want to learn more?
CVHHH’s Palliative Care Nurse Practitioner, Dr. Kelley Elwell, DNP, APRN, FNP-BC, is available to discuss and answer questions about advance care planning and end-of-life care. Contact Dr. Elwell at kelwell@cvhhh.org.
The Vermont Ethics Network is a great resource to guide you during advance care planning for yourself or a loved one. Visit their website for more information.
The Conversation Project, a public engagement initiative from the Institute for Healthcare Improvement, offers a conversation starter guide to help you prepare for conversations with loved ones about care planning.
