If you (or a loved one) have a serious illness, you might wonder how you can ensure you will get the medical care you want. I’m guessing most of us agree that if we’re in a coma, we don’t want machines keeping us alive. But what about other kinds of tests and treatments do you want towards end-of-life? Are there any circumstances where you would want life-saving measures? Fortunately, there are multiple tools you can use to specify the type of medical care you want. The time to prepare is now – even if you have no health issues. Don’t wait until you or your loved one is close to the end of life.
This chart summarizes four ways you can dictate what care you want – read below for details on each method.
A DNR (Do Not Resuscitate) is a medical order, written by a doctor and signed by the patient or the patient’s healthcare proxy. A DNR order stops medical staff from performing just one procedure – CPR (cardiopulmonary resuscitation) after cardiac and/or respiratory arrest. Medical personnel are required to follow a DNR order and forgo CPR attempts.
However, many medical providers misinterpret the meaning of a DNR, and thereby withhold treatments that could sustain or cure a patient. For instance, it’s not supposed to stop medical providers from ordering tests and other procedures and administering pain medication. Additionally, research shows that patients with DNRs have far worse recovery rates than patients with identical conditions and no DNRs.
Because medical providers often misinterpret DNRs, I suggest you don’t sign a DNR without really thinking about the pros and cons to make sure you get the medical care you want. And know that you can cancel a DNR at any time.
How do you get a DNR?
A doctor writes the order for DNR, usually when a patient is in the hospital. The patient, or the patient’s proxy, signs the order.
In addition to a hospital-based DNR, patients can also get a “pre-hospital” DNR, which can be helpful for very ill or elderly patients living at home or in skilled nursing facilities. If you want a DNR, speak with your doctor. And keep the DNR in a convenient place – perhaps on the fridge or at the front door. Additionally, make sure a copy is with the patient at all times when away from home.
Since every state has their own requirements for DNRs, search for your state’s rules online.
For more detailed information on DNRs, read my blog post: Is a DNR a Good Idea for You or a Loved One?
POLST – Portable Medical Order
I’m guessing you have not heard of a POLST. These “portable medical orders” are more than a form – it’s a process. The National POLST organization states that POLST is “an approach to end-of-life planning that emphasizes eliciting, documenting and honoring patients’ preferences about the medical treatments they want to receive during a medical crisis or as they decline in health.”
Medical providers complete the 1-page form by writing specific instructions regarding what types of medical treatments to use or avoid. This information is then shared with other healthcare providers, especially in emergency situations. Each POLST form should be based on conversations between the doctor and patient regarding care goals, diagnosis, treatment options and the likely effect of each option.
Since a POLST is a medical order written by a doctor, EMTs and hospitals must do what the POLST specifies.
Importantly, patients can change or terminate the form at any time. Additionally, a patient can ask for and receive needed medical treatment at any time, no matter what the POLST form contains.
[Note, I use the term doctor to simplify the text, but the comments apply to all providers writing POLSTs.]
What does POLST stand for?
Originally, POLST stood for “physician orders for life-sustaining treatment”. However, in 2017, the National POLST organization updated their definition to “portable medical order” to include the broader use of the forms. For instance, doctors, as well as nurse practitioners, registered nurses, social workers, and chaplains may assist in the process. Interestingly, the name of the form can vary from state to state.
Who can benefit from POLST forms?
Any patient with a life-limiting serious illness, or advanced age, can benefit from POLST forms. Patient age or living situation does not preclude patients.
These forms are helpful when patients transition from one care setting to another. For instance, when patients transfer from a rehab facility to hospital, or when patients living at home seek care in an emergency room or hospital.
POLST forms provide critical information in emergencies.
In medical emergencies, the POLST form conveys clear instructions in a standardized method, making it easier for emergency personnel to provide only the medical care patients want.
Every state is slightly different.
Every state and Washington DC has a POLST program, although the exact name and stage of implementation may vary. Look up your state’s program here.
POLST guidelines protect patients.
The National POLST organization outlines guidelines for healthcare professionals, including these:
- Doctors should never force a patient to complete POLST form, nor should they use incentives to encourage their use. Patients can refuse to have a POLST or change their mind at any time.
- Doctors cannot complete the form without the participation of the patient or a surrogate. If the patient is unable to participate, the surrogate’s treatment choices must reflect the desires of the patient based on his/her knowledge of the patient’s values and preferences.
- Conversations between the doctor and the patient must be the cornerstone of any POLST. The form is designed to document treatment decisions after shared decision-making conversations. Most states use a form that requires patients (or surrogates) to sign the document, acknowledging approval.
- Patients, family members and/or surrogates cannot fill out the form. Doctors must complete the forms, after making sure each participant understands the options and the impacts of the decisions.
- POLSTs are dynamic forms, which should reflect the patient’s current preferences. As health status, prognosis and goals change over time, doctors should speak with patients and update POLST forms as needed.
- Doctors should complete both sections A and B. Section A covers preferences for CPR for full cardiac or respiratory arrest. Section B covers medical interventions or treatments for other medical situations.
What’s the difference between a POLST form and a DNR order?
As discussed above, a DNR is only meant to instruct medical personnel to forgo CPR in response to cardiac or respiratory arrest. In contrast, Section A of the POLST form allows patients to state they either want, or don’t want CPR in response to full cardiac or respiratory arrest.
Importantly, in Section B, patients can share their decisions about treatment preferences to emergency personnel and other healthcare providers for situations other than full cardiac and respiratory arrest. For instance, Section B can outline what level of treatment and other medical interventions a patient desires if he/she is responsive, has a pulse, or is breathing. Or you can outline when you would, or would not, want to be intubated. In contrast, neither a DNR order nor Section A of a POLST form provides this type of time-sensitive, critical information. Section B is of utmost importance – truly the “heart of POLST“.
Where to keep your POLST?
If you decide you or your loved one needs a POLST, keep a copy of the document in an easy-to-find place, such as on the fridge or by the front door. Also, the patient, a family member and any healthcare proxy should have a copy with them at all times – you never know when you’ll need it! Note that a copy of the form is valid, you don’t need to show an original copy.
How can you get a POLST?
Firstly, research the criteria in your state. Then tell your primary care doctor you would like to collaborate on a POLST together.
Advance directive – living will
An advance directive, also called a living will, is a legal document that helps you get the medical care you want if you can’t make your own decisions. This document contains your desires regarding your values and desires related to end-of-life care if you are incapacitated and unable to speak for yourself. For instance, you can express your wishes related to CPR, ventilators, tube feeding, IVs, and comfort care.
Importantly, you can update the document as your needs and preferences change.
What to consider when crafting an advance directive.
Firstly, think about what kinds of treatments you would, or would not want, in a medical emergency. Consider what factors are most important to you and put them in writing. Are there important milestones you want to reach, no matter your condition? Do you have a clear idea of when you would no longer like to prolong your life? Do you know what types of life-prolonging treatments you do or do not want? Under what conditions?
Speaking with your doctor about your health conditions and prognosis can help you make these decisions. Note that discussions regarding advance care planning may be covered by your health insurance – ask before you book an appointment.
An advance directive lets you provide instructions for specific situations, such as these scenarios provided by the National Institute on Aging:
- If a stroke leaves you unable to move and then your heart stops, would you want CPR? If a stroke leaves you mentally impaired, does your decision change?
- What if you are in pain at the end of life? Do you want medication to treat the pain, even if it will make you lethargic?
- What if you are permanently unconscious and then develop pneumonia? Would you want antibiotics? A ventilator?
What’s the difference between a living will and a POLST?
Firstly, a POLST is a doctor’s order and a living will is a legal document.
A POLST is a one-page form focused only on immediate treatments. It’s particularly helpful in medical emergencies since EMTs and other medical staff must follow the instructions.
In contrast, a living will guides the decisions made on your behalf by your healthcare proxy. However, a living will is not a medical order, and EMTs and hospital personnel do not have to follow your wishes. In fact, the medical staff must follow standard emergency medical protocols unless a doctor’s order says otherwise. In other words, without a POLST or a DNR, emergency personnel must perform life-saving measures. Living wills are more useful in non-emergency situations, like when you are in a hospital or skilled nursing facility.
How do you create a living will?
You have a few options when creating your living will. The easiest, although not the cheapest way, is to hire a lawyer who specializes in estate planning. In my opinion, if you can afford it, hire an estate lawyer. But if you cannot afford a lawyer, you can download a form online, fill it out and get it notarized. However, realize that state laws vary and change often, so you need to make sure you use the most current form for your state.
Make a video detailing your care choices.
In addition to a living will, consider creating a video where you make your wishes clear. Researchers found that doctors and nurses are more likely to understand and follow a patient’s wishes after viewing a patient’s testimonial video. You can make your own video with the help of the Institute of Healthcare Directives.
Durable power of attorney documents.
A durable power of attorney is a legal document naming a healthcare proxy who will make decisions regarding your care if you are unable to do so. For instance, your health care proxy will have legal authority to make medical decisions for you if you are unconsciousness, in a coma, or living with dementia. Make sure your proxy (also referred to as an agent or surrogate) clearly understands your desires and values.
Every adult age 18 and older should complete a healthcare proxy form.
Importantly, don’t assume that your spouse will automatically have decision-making power in all situations. To ensure the person you want will be legally allowed to make medical decisions for you, appoint a healthcare proxy.
Share your desires with your healthcare proxy.
Your proxy will not know what kinds of medical care you want if you don’t tell him/her. Make sure you explain the types of care you would like to receive, and those you want to decline, in various situations.
Do you need a living will and a healthcare proxy?
Note that you can have a proxy in addition to or instead of a living will. Having both helps you ensure that you will get the medical care you want in any circumstance. Certainly, it is impossible to include every type of medical situation in your living will. But your healthcare proxy can make decisions on your behalf based on your desires and values. For instance, if you are injured in a serious car accident, a healthcare proxy can make decisions for you even if you did not mention car accidents in your living will.
How do you appoint a healthcare proxy?
You can download a healthcare proxy form online. Note that different states have different forms and rules, so make sure you use a form for your state. After you have filled out the form, sign it in front of 2 witnesses. The witnesses will also have to sign the document. You do not need a lawyer.
Keep a copy for yourself and give a copy to your healthcare proxy. The proxy will be valid unless you void the agreement.
Are you ready to ensure you get the medical care you want?
Take some time to consider what you want and don’t want in various scenarios. If you are healthy, I recommend you get a living will and appoint a healthcare proxy now. In addition to those 2 documents, anyone dealing with a serious, potentially life-shortening illness should also consider a POLST. If you can’t get a POLST, then consider a DNR if the circumstances warrant it.