Alex Choi, MD, completed a combined internal medicine-pediatric residency at Stony Brook University Hospital, then an adult palliative care fellowship at Yale New Haven Hospital. He is currently an assistant professor of the Yale palliative care program and practices inpatient and outpatient palliative care. Jane Jeuland, MDiv, received her Masters of Divinity from Yale Divinity School. She is an ordained Episcopal priest. She received her chaplaincy training from Yale New Haven Hospital and is a board-certified chaplain. She has served as an oncology chaplain and was the first palliative care chaplain at Yale New Haven Hospital.
This post is intended for informational purposes only and does not constitute legal or medical advice.
A person has the right to make medical decisions regarding their health. A living will is a legal document that gives people a voice when they might not otherwise be able to express their preferences, including for end-of-life medical treatment. Some of the medical treatments that may be covered in a living will include the use of mechanical ventilation, which is used when a person cannot breathe on their own; tube feeding, which is used when a person cannot eat on their own; and cardiopulmonary resuscitation or CPR, which attempts to restore circulation and breathing in a person whose heart has stopped beating.
Here, you will learn more about what a living will includes and why it may be a part of your care plan, why it is important to create a living will after a diagnosis of cancer, how to go about creating one, and common concerns people have during the process.
When should I create a living will, and why?
When a person is not able to communicate in any way, an appointed health care proxy or legal next of kin, which is often but not always a family member, has to make decisions on their behalf. This can be difficult for many reasons. Imagine a mother who has become ill and has 8 children with 8 different opinions about the kind of medical treatment their mother should have. Or, imagine an only son who is taking care of his father but never talked with his father about how he feels about artificial nutrition. A living will can serve as a guide for the health care proxy and/or next of kin to make complex medical decisions. Having a living will may also help relieve any sense of guilt that a loved one’s wishes are not being honored.
Dr. Mark Swidler, a palliative care physician, often talks about a living will like car insurance. No one gets car insurance during a car accident; we have car insurance in case we need it. In the same way, it is important to create a living will now in case you need it.
In terms of when to create a living will, earlier is better, just like car insurance. But generally speaking, creating a living will is highly recommended if you have experienced any of the following medical events:
You have been diagnosed with a life-changing disease, including cancer.
You have been admitted to the intensive care unit (ICU) of a hospital for the first time.
You have experienced multiple hospital admissions.
A living will only applies to the very specific medical scenarios outlined within the document, so it is not used to make medical decisions in other situations. As a result, doctors and hospital staff will provide the same level of care in any other medical situation you may face that is not listed in your living will. Also, should your doctors or hospital staff encounter a specific medical scenario that is listed in your living will, they will include the living will as part of their discussion with your health care proxy or next of kin before changing any part of your medical care plan.
How can I create a living will?
A living will can be completed without an attorney or facilitator, but many people wish to talk through creating a living will with someone who is knowledgeable about the document and familiar with the requirements of the state where you live. However, finding an attorney can be expensive, and figuring out who to talk to at the hospital can be confusing. Thankfully, most hospitals and cancer care centers have chaplains and social workers to help patients complete a living will at no cost. If you do not know how to access these staff members, ask your doctor if they can answer your questions about living wills and help you complete it or if they can refer you to the right person at your care center who can.
It is important to know that a living will is not legal until you sign it, as required by the laws of your state. Often, this will include witnesses who will also sign the document to acknowledge that they witnessed your signature. A witness can be anyone 18 years of age or older who is of sound mind and who has not already been listed on your living will as a health care representative. Examples of witnesses include hospital staff, friends, and family members.
You may change your living will at any time by completing and signing a new living will with witnesses. Only the most recently dated living will is considered legal.
Does creating a living will mean I’m giving up?
Creating a living will does not mean that you are giving up. Rather, it is a way to tell your loved ones what your priorities are. Some people want to try every possible medical intervention until the very end. Others want to focus on comfort and spend their remaining time at home with their loved ones.
Some people worry that creating a living will may lead to an earlier death. However, there is no evidence that completing a living will hastens death. Other people worry that creating a living will may go against their religious or spiritual beliefs, including offending God, the divine, a higher power, or the collective consciousness. But many religious traditions permit and even encourage people to complete a living will. We recommend consulting your religious community leaders or the hospital chaplain service for guidance.
If you or a loved one does not want to discuss end-of-life decisions and you are facing difficulty in creating a living will, it may be helpful to look for an attorney or health care provider who can help facilitate the conversation and completion of the living will. Examples of health care workers who may be able to help you with this discussion include a primary care physician, palliative care physician, hospital chaplain, social worker, or case manager. Patient advocacy organizations also offer guidance on how to have difficult conversations with loved ones.
What do I do after creating a living will?
After you complete your living will, remember to bring the document to your doctor or other hospital staff member and ask that it be scanned into your medical record. It is also important to keep a copy of your living will with you during your cancer care, share copies with your health care representatives and medical team, and talk with your loved ones about your living will.
The authors have no relevant relationships to disclose.
This post is not medical or legal advice and represents the opinions of the authors.