Many of those newly diagnosed with CLL/SLL consider the risk of dying of this condition, even if the prognosis is considered good. These thoughts may recur with every upcoming medical appointment. For those with CLL/SLL who are in their 80’s or older or who have other serious illnesses, considering mortality may be routine. For some, death is very frightening while others may accept (or even welcome) the end of life on earth. Medical care in advanced illness may be available but may or may not be desired. Most people lose their ability to make their own health care decisions as end of life approaches. This is why it is important to have advance directives, which includes a health care power of attorney, living will, and Physician Order for Life-Sustaining Treatment, written and in place before they are needed. Please see explanations for each document below.
Power of Attorney
A medical or health care power of attorney is a type of advance directive in which you name a person to make decisions for you when you are unable to do so. It is a legal document and in some states this directive may also be called a durable power of attorney for health care or a health care proxy.
Choosing a person to act as your health care agent is important. Even if you have other legal documents regarding your care, not all situations can be anticipated, and some situations will require someone to make a judgment about your likely care wishes. State laws that let you choose a proxy or agent usually require that the request be in writing, signed by the person choosing the proxy (you), and witnessed. In many cases, the proxy also signs the document. Some states have a special form for this.
A living will is a written, legal document that spells out medical treatments you would or would not want to be used to keep you alive, as well as your preferences for other medical decisions, such as pain management or organ donation. Once written, a copy should be given to your primary physician, the person you’ve designated to make your healthcare decision, and a copy kept at home.
U.S. Living Will Registry cautions that living will forms on the Internet may be outdated. State laws change, so you’ll want to make sure the living will form you’re filling out is current. You can pick up a reliable form from a hospital, or an estate attorney. Living will forms must be notarized or witnessed to be legally valid.
Those with CLL/SLL may have specific preferences related to their care of this condition, even at a time when they are unable to express those wishes. A few scenarios are worth considering:
- Your CLL/SLL is stable on oral medications, but a different life-threatening illness occurs. Your family and health care providers need to decide whether to continue the treatments for CLL/SLL given that it appears almost certain that you will die before untreated CLL/SLL would affect your health. Your health care directive could state something like, “Treatments for my CLL/SLL may be discontinued if they are no longer expected to prolong my life.”
- Failure of treatments for CLL/SLL has led to severe infection. Experimental treatments for CLL/SLL may be available in combination with antibiotics. Your family is asked for consent for such treatments. Your health care directive could state something like, “I accept that my life may be near its end and do not want experimental treatments for my CLL/SLL.” OR “I am not ready to die and would like every possible treatment that has at least a small chance of allowing me to recover to enjoy my life.”
- Your CLL/SLL is well controlled on oral medications, but a progressive brain illness (e.g. Alzheimer’s Disease) has led to loss of ability to make health care decisions. Discontinuing treatment for CLL/SLL may lead to an earlier death than the natural progression of the brain disease. In this situation, your health care directive could explain your preference for a death from CLL/SLL versus from a loss of brain function. Your health care directive could state something like, “If I permanently lose the ability to make health care decisions for myself, I give my proxy permission to discontinue my treatments for CLL/SLL, even if that might shorten my life”. OR “I do not want to discontinue my current treatments for CLL/SLL regardless of my level of physical or cognitive disabilities”.
Physician Order for Life-Sustaining Treatment (POLST)
POLST forms are portable medical orders that travel with the patient and have been signed by the patient’s physician. A POLST form is generally reserved for those who are seriously ill or frail and toward the end of life. All adults should have an advance directive to help identify a surrogate decision maker and provide information about what treatments they want for an unknown medical emergency. A POLST form converts stated preferences into medical orders that can be followed by emergency personnel and nurses in a variety of settings. A POLST form is not a substitute for a living will; this document is short and is limited as to how you are able to express your beliefs surrounding life-sustaining treatments.
For more information on POLST forms, please visit the National POLST Paradigm website here.
Advance Care Planning for Those with CLL/SLL, by Edward Ratner, MD and Amber Koehler, PA-C. (Relevant Article)
See Dr. Sharman’s blogpost here on end of life decision making and how patient’s should consider how they want to direct this experience through advance directives. Please note, parts of the blogpost may be difficult to read.