The Evolution of Advance Care Planning By: Celena Romero

In the summer of 1969 Luis Kutner wrote an article titled Due Process of Euthanasia: The Living Will, A Proposal. The article summarizes the outcomes of several trials involving family members ending the life of an ailing loved one who is suffering from a debilitating, terminal disease. He referred to the acts as “mercy killings.” Kutner, a human rights lawyer, represented society acknowledging that common law was written to treat mercy killings no different than any other acts of murder; however prosecutors, judges, and juries approached mercy killings with sympathy rather than punishment. Given the fact that law does not condone suicide or permit one to assist in suicide, Kutner proposed A Living Will as an alternative solution to relieve great pain and suffering from an incurable fatal disease.

Kutner knew that law honored a patient's right to consent to or to refuse treatment; whether it be an injection or an operation. A patient’s consent must be voluntary and well informed. The Illinois Supreme Court refused to condone the authorization of blood transfusions to a competent adult who had steadfastly refused due to religious beliefs. The problem remains if a patient is unconscious, cannot give consent, or is completely unresponsive, how far should a physician go to preserve life? It was presumed that physicians applied an ordinary means to preserve life but no extraordinary means if the patient was not expected to recover from the comatose state. Ordinary and extraordinary are terms subject to personal interpretation.

Kutner questioned how an individual patient can retain the right of privacy over his or her body if the law clearly prohibits mercy killing, even at the patient's request. On the contrary, the law allows an individual the right to refuse treatment even if it would prolong life. If a doctor does not respect the patient’s refusals, he or she would be subject to liability.

The suggested solution proposed by Kutner is that the individual, while fully in control to express himself or herself, indicate to what extent he or she would consent to treatment. The document indicating such consent may be referred to as A Living Will:

The document would provide that if the individual's bodily state becomes completely vegetative and it is certain that he cannot regain his mental and physical capacities, medical treatment shall cease. A Jehovah's Witness whose religious principles are opposed to blood transfusions could so provide in such a document. A Christian Scientist could, by virtue of such a document, indicate that he does not wish any medical treatment.

Nearly 50 years later, end of life care, shared decision making, informed consent, and advance directives, such as A Living Will remain at the forefront of ethical and legal debate, and public policy. Americans are living longer and are healthier than previous generations but due to advances in medical treatments and technology it is extremely difficult to predetermine the timing of death. Federal policy, state legislature, physician groups, bioethicists, and society at large impact health care decisions. Don’t let them impact yours. Take control of your life decisions regarding medical treatment and end of life wishes. It starts with a conversation. Find out more by visiting yourlifeyourwishes.com.

Reference:
Kutner, Luis (1969) "Due Process of Euthanasia: The Living Will, A Proposal," Indiana Law Journal: Vol. 44: Iss. 4, Article 2

Four Things You Need to Know About Advance Care Planning

By Leon S. Kraybill, M.D.
Lancaster General Health/Penn Medicine

As a geriatrician, I work with individuals to discuss their changing health every day. Discussions of disease, functional changes, clinical decline, and end-of-life care are very common. I routinely encourage people to consider health options, make treatment choices, and share these through discussion and advance care planning documents.

Here are four tips to guide you through the advance care planning process:

Start the conversation. A conversation about advance care planning is about life and how you want to live; not about death. It is a perfect time to express your wishes, identify what is most important to you, and connect to your loved ones. Start your discussion by asking yourself what you value most about life and health, and how you would like to accomplish that.

Advance care planning discussions are for everyone. The choices you make may change during different phases of life, but even young healthy individuals should make choices about their future care.

Just do it! Complete an advance healthcare directive. The right time to complete your advance healthcare directive (healthcare power of attorney and living will) is when you think about it. Don’t wait for the perfect moment, the right words, or a medical change. The advance healthcare directive expresses your wishes and instructions for medical care if you are unable to make decisions for yourself during a terminal change. Click here to download and complete an advance healthcare directive.

Share your advance directive with loved ones, medical providers, and anyone who will help you make future choices. Your wishes cannot be honored if others don’t know about them.

Consider POLST if you have serious health conditions: POLST (Pennsylvania Order for Life-Sustaining Treatment) is a form printed on bright pink paper that allows documentation of your specific wishes for end-of-life care. It guides medical providers and family if you are unable to participate in moment-to-moment decisions. The form is kept near you at all times, usually on your refrigerator or by your bed if you are at home. It should be documented in your electronic medical record. Click here to learn more about POLST.

Through ongoing conversations, your loved ones and healthcare professionals are far more likely to be able to understand the medical treatment you desire, and most importantly, honor your wishes.

Leon S. Kraybill, M.D., is a physician with LG Health Physicians Geriatrics and Chief of Geriatrics for LG Health/Penn Medicine. He also serves as the Medical Director at Mennonite Home Communities in Lancaster and at Luther Acres in Lititz, PA. Education: Medical School—Temple University; Residency—Lancaster General Hospital Family Medicine Residency Program; Fellowship—Lancaster General Hospital Geriatric Fellowship.

Your Life Your Wishes - Hannah's Story

Family: The Heart of Advance Care Planning

Welcome to the "Your Life, Your Wishes" blog.  Join us here regularly as we share testimonials, articles, videos, and important information related to advance care planning.

The Conversation Starts Today

The foundation of advance care planning is, to put it simply, family preparedness in the face of whatever life brings. To be more specific, it's about taking steps today to establish a care plan that suits your needs, values, and preferences tomorrow, and onward.

Communication is the key to advance care planning, and it all starts with a conversation. By taking that first, simple step, you’ll be taking control of what matters most:
Your life. Your wishes. 

Your advance care plan comes down to three easy steps:

• Understand what, and when, certain medical decisions might need to be made
• Consider these decisions ahead of time, and how they may be impacted by your goals, values, and preferences
• Communicate your choices, needs, and wishes with loved ones

By generating a dialogue with loved ones in anticipation of long-term medical decisions, you'll be ready for tomorrow, confident in the future, and boldly at the helm of Your Life, Your Wishes. 

Start the conversation today.

Advance Directive

Advance directive — A document that enables an individual capable of making decisions to articulate preferences and authorizations regarding health care. 

•Appointment directive (health care proxy, power of attorney for health care) is a document in which you legally appoint a health care agent/representative/proxy/power of attorney for health care) and authorize that person to make treatment decisions for you if you are ever temporarily or permanently unable to make these decisions for yourself. Your appointed agent will have the same decisional authority as you and will be able to confer with your care team in real time and make any decisions you would be able to make. The appointment of an alternate agent is recommended as a back-up in case your primary agent is unavailable or unable to make decisions for you.

•Instruction directive (living will) is a set of instructions about specific tests or treatments that you would or would not want under specific conditions. The weakness of the instruction directive is that it requires you to anticipate future medical conditions that you may or may not experience and predict what types of care you would or would not want. 

Decisional capacity—The ability to understand your medical condition and its likely course; the benefits, burdens and risks of the proposed treatment options and alternatives; and their likely outcomes; and make informed care and treatment decisions based on the information. If you temporarily or permanently lose the capacity to make your own medical decisions, a surrogate (either an agent you have appointed in an advance directive or a close relative) will make decisions on your behalf.