Advance Care Planning: Know Your Options
Did you know that April 16 is National Healthcare Decisions Day? It’s fantastic that this day is bringing awareness to the importance of creating advance directives. The other good news? You don’t have to wait until next April 16 to think about what kind of healthcare options are right for you!
Advance care planning doesn’t have to be overwhelming. A few actions steps can make a big difference!
Photo credit: p.m.graham (Tokyo, Japan)
Why Bother with Advance Care Planning?
I met Monica, a smart and engaging 42-year-old woman, as she sat in shock beside her mother’s ICU bed. A sudden stroke had left Monica’s 66-year-old mother unresponsive and dependent on a ventilator to sustain her life. “The doctors don’t think she’s going to wake up,” Monica told me tearfully, “and I don’t think mom wants to live this way. But I feel so conflicted because we never actually talked about what she would want if this happened. We thought we had so much more time.”
Stories like Monica’s are all too common in U.S. hospitals, where life-sustaining therapies and ICU-level care are readily available in most communities. When used in hospitals, therapies such as ventilators, hemodialysis, tube feeding, blood pressure support, and other forms of support for the heart and lungs can be a valuable bridge to let the body rest while you or your loved one recovers and regains these functions.
However, when illness is critical and there is little to no chance that a person will regain consciousness or function in the future without life-sustaining treatments, some people would choose not to continue this kind of care. Physicians have the right to recommend the cessation of such therapies when they are not thought to be a bridge to recovery, and patients - or their designated healthcare proxy - also have the right to ask that such treatments be discontinued.
What Does an Advance Directive Do?
Because during a period of critical illness many patients are unable to speak for themselves, their next-of-kin is often called upon to help make decisions about the best care for them. In such cases, patient’s families often find it helpful when a patient has made an advance directive detailing what kind of treatment they would want if they were unlikely to recover certain levels of mental or physical functioning.
Monica was struggling to make decisions on her mother’s behalf because her mother did not have an advance directive and also had not discussed with Monica, her next-of-kin, what her wishes would be for care at the end of her life. Monica was unsure what quality of life her mother was willing to accept. If her mother never regained consciousness and was dependent on life-sustaining therapies such as a ventilator or feeding tube, would she consider that to be an acceptable quality of life, or would she choose to be made comfortable with medications and allowed to die without the ongoing use of such treatments?
What Does an Advance Directive NOT Do?
It is VERY important to understand this about advance directives: they only go into effect in the event you are 1) unable to speak for yourself and 2) are not expected to recover from your illness or injury or to function in the future without the use of life-sustaining treatments (like a ventilator with a tracheostomy or IV medicines in an ICU to artificially support your blood pressure).
An advance directive does NOT stop you from receiving life-sustaining treatment in an emergency such as an accident or sudden illness.
An advance directive does NOT stop you from receiving life-sustaining treatment when your doctor and other medical providers assess that you are likely to recover from your illness or injury.
An advance directive does NOT automatically translate to a DNR (Do Not Resuscitate) order. If you indicate on an advance directive document that you do not want to be resuscitated, a DNR order would go into effect only if you were being treated, and your medical team assessed that you were highly likely to die despite the use of life-sustaining treatments. Most documents also specify that doctors should speak with the patient’s healthcare proxy before following an advance directive or entering a DNR order.
What is a Healthcare Proxy?
In Monica’s case, it was at least clear that Monica, the only child of her unmarried mother, was the next-of-kin and therefore able to make decisions on her mother’s behalf. However, in some families the next-of-kin is not as clear to define. Or perhaps Monica’s mother actually wanted someone else - like a friend or an unmarried partner - to make decisions for her. In that case, mom would have needed a written advance directive to name a healthcare proxy who was not her next-of-kin. Sometimes a healthcare proxy is also called a surrogate decision-maker. In legal terms, the decision-maker named in an advance directive is usually called a durable power of attorney for health care.
Different states have different laws about who makes medical decisions if a patient is unable to do so, but most laws recognize the next-of-kin and use an order of designated decision-makers such as 1) parent (of a minor or an unmarried person) 2) spouse 3) adult child 4) sibling 5) other relative if no closer relative is available 6) a friend or other person familiar with the patient’s values or wishes. Some states have provisions for naming a physician or an agent of the court to become a patient’s healthcare proxy if no one else is willing or available. If a patient has named a durable power of attorney for health care, that person would be considered the decision-maker even if they are not the patient’s closest relative.
What are the Types of Advance Directives?
Living Will
A living will is a legal document that indicates what kinds of treatment you would want - or not want - if you could not speak for yourself and were not expected to recover from your illness or injury. Most living wills give the opportunity for individuals to detail whether they want their life to be sustained through technology such as ventilators, hemodialysis, tube feeding, IV medicines for blood pressure support (typically provided only in ICUs), and other forms of support for the heart and lungs. Some people, often because of religious beliefs, also find it valuable to include details about whether they would accept blood products in order to sustain their life. Most people also indicate on their advance directive whether they would want resuscitation efforts to be made if their heart and lungs stopped working, or if they would rather have a DNR (Do Not Resuscitate) order in place.
Durable Power of Attorney for Health Care
As part of making a living will, many people choose to name a durable power of attorney for health care, the person they would trust to make decisions for them if they were unable to speak for themselves. (Also called a surrogate, proxy, or agent.) This is not the same as a financial power of attorney and should be named separately in a power of attorney document. A power of attorney for health care can also be named in a separate document outside of a living will. The person named should be familiar with your values and your wishes for your end-of-life care.
Out-of-Hospital DNR Order (often used with DNI and DNH)
Typically, if you ask for a DNR (No Not Resuscitate) or DNI (Do Not Intubate) order in a hospital, that order stands only for the course of that hospitalization. You could ask to have those orders changed at any time while you are hospitalized, and once you leave the hospital those orders expire. You would need to ask to have them entered again the next time you are hospitalized.
However, some people do not want to be resuscitated or intubated at any time for any reason. They want not just an advance directive stating their wishes but an actual standing medical order signed by a physician or similar ordering medical professional. When appropriate, a physician can provide an Out-of-Hospital DNR order to hang on a person’s refrigerator or at their bedside to tell paramedics that this person should not have resuscitation attempts made at any time. Such an order can also be taken along to a hospital and entered into a medical chart.
If a patient never wants to be hospitalized (which is common with very elderly people or those with serious, life-threatening illnesses), they can also ask for a DNH (Do Not Hospitalize) order from their medical provider so that paramedics would not transport them to a hospital against their wishes.
MOLST (Medical orders for life-sustaining treatment) and POLST (Physician orders for life-sustaining treatment) Forms
Most states now offer options for these forms, though they are not yet used nationwide. MOLST and POLST forms are medical orders that can accompany your advance directive. They are meant for people with serious and advanced illnesses, essentially stating that they want the terms of their advance directive (such as DNR, DNI, DNH) to be in effect. It is useful to note that although these forms are meant to be medical orders, in some states paramedics are not allowed to follow MOLST or POLST instructions and still need an out-of-hospital DNR order signed.
Advance Care Planning Action Steps
Ready to continue this conversation? Advance Directives are for everyone, and all of us can benefit from creating at least a living will and a durable power of attorney for health care. Here are some steps to follow as you decide what options are right for you.
Reflect on your values and wishes for your care at the end of your life. What do you consider an acceptable quality of life? Would you want to be maintained through the use of life-sustaining machines and medications, and if so for how long?
Talk with your doctor or other medical provider about which advance directive options best meet your needs, and what kinds of treatments would best match your values about quality of life.
Consider whether an out-of-hospital DNR order or MOLST/POLST form is right for you if you are aging or have a serious illness.
Choose someone you trust to honor your values and wishes as your healthcare proxy, and talk with them about what you would want if you were critically ill or injured.
Create your advance directive documents, either on your own or with an attorney. (Remembering that medical orders must be completed by a medical provider.) Some states do not require an attorney to complete advance directive documents, but many documents do need to be witnessed even if an attorney is not involved. Use witnesses not related to you and not named in your advance directives. You can also have your signature and the signatures of witnesses notarized if you choose not to use an attorney.
Share your advance directive documents with your medical providers and your healthcare proxy. You might also choose to speak with other family members and loved ones about your values and wishes for your health care.
Take advance directives and related medical orders with you if you are hospitalized (and ask your health care proxy to prepare for this in the event you are unable to do so). Ensure your health care proxy knows when to ask medical providers to enter orders into your chart such as DNR/DNI.
Now that you know your options, I encourage you to follow the steps above to prepare yourself and your loved ones for your future needs. Making advance directives can feel scary, but it’s probably scarier if you’re sick or injured, and your loved ones don’t know how to follow your wishes for your medical care. Or if you’re wondering what would happen if you couldn’t speak for yourself. This is your chance to keep your voice in your own care!
If you don’t want to use an attorney, you can find advance directive forms through organizations such as AARP, your local area aging office, and the National Hospice and Palliative Care Organization. Your doctor’s office likely also has forms you can use.
Need Help with Advance Care Planning?
When you’re ready to create your advance directives, certainly consult with your physician and perhaps an attorney. If you’d like to talk more about preparing for those conversations or want help clarifying your values and wishes, I am available to consult with you. Want to learn more about options such as palliative care and hospice? Information is available here. This is important work, and you don’t have to do it alone.
Emily Browning, LCSW is a clinical social worker with years of experience in healthcare, including hospice and palliative care. Please note that the information above is not meant as a substitute for medical or legal advice.
