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Advance Directives: Nuts and Bolts

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The term “advance directives” has been in use for decades now, particularly since the passage of the Patient Self-Determination Act of 1990 which propelled advance directives into hospitals and health care facilities as the document that would end confusion about treatment preferences and surrogate decision-makers. Unfortunately, this has not reflected the entire experience with advance directives; research has shown that even when those documents exist, clinicians and health care institutions do not follow them well. There have been some benefits to advance directives, even if they did not solve all the problems surrounding medical decision-making and communications between health care providers and patients. In one study of patients who passed away in the hospital, the existence of advance directives was correlated with less stress for those family members compared to the family members of patients who did not have advance directives.

What are advance directives?
They are legal documents that pertain to a patient’s designated proxy decision-maker and/or the patient’s treatment preferences. Advance directives are not just for people who are imminently dying. They are tools in the process of advance care planning and are for patients who are preparing for the future, in the event that they have a life-limiting illness or life-threatening condition. Every state in the U.S. has some kind of advance directive document in place. You may have heard terms like “living will” or “durable power of attorney for health care” or “DPAHC.” A “living will” refers to the portion of an advance directive that gives treatment directives; as these preferences are applied to when the patient is living, it is referred to as a living will. The “DPAHC” refers solely to the document that designates the proxy decision-maker for health care, separate from the durable power of attorney for finances. The DPAHC and the DPAF can be the same person or two different people. A patient can override their own advance directive at any time—both the treatment preferences and the proxy decision maker.

If you’ve ever looked at an advance directive, the language can be vague and often describes hypothetical circumstances; there have been efforts since the 1990s to improve upon standard advance directives. One widely used alternative is called “Five Wishes.” It is recognized as an advance directive in 42 states. The advantage of this document is that it incorporates more information about a patient’s values. The 5 “wish” categories include the designation of a health care proxy and treatment preferences, but it also has templates for patients to specify how they would like to be cared for, their desires for comfort at the end of life, and what else they would like their loved ones to know.

What’s the difference between an advance directive and a “DNR”?
While an advance directive describes a patient’s treatment preferences, a “do-not-resuscitate” or “DNR” is an actual physician order that carries out what the patient prefers specifically regarding resuscitation. A DNR does not mean a patient is on hospice or is not receiving any active treatment; it is solely in reference to resuscitation. If a patient has such an order in place, it is important that health care providers across different venues are aware; all states have ways to communicate such an order. Oftentimes this is a single-page form that accompanies the patient to wherever they are receiving their care; while in the hospital or in a skilled nursing facility this order sheet will reside with other physician orders, at home patients and families should keep it someplace visible and easy to access—emergency personnel usually recommend it on the refrigerator. In some states, patients can obtain a medical alert bracelet that states that they have a DNR order. As a physician order, the DNR should be honored by all medical personnel.

What’s the POLST?
Some GRACE members may have heard of Physician Orders for Life-Sustaining Treatment, or “POLST.” This is a new set of physician orders that expands the DNR order form to include other related orders. Six states have a formal POLST program and many others are developing one. The POLST form was originally developed in Oregon, as an order set for patients with serious illness and a limited prognosis—it does not take the place of an advance directive, since it does not require the designation of a health care proxy. It does give more specific information on a patient’s treatment preferences, beyond resuscitation to include the use of artificial nutrition, the intensity and focus of care, and in some states, the use of antibiotics. As physician orders, POLST forms accompany the patient across different venues and are printed on brightly-colored paper—for example, California uses “pulsar pink.” The efforts to use POLST forms are in large part a response to advance directives falling short of honoring patients’ preferences for their treatment.

I would be interested in hearing from GRACE members about their experience with any of these documents and whether they find them helpful in planning for the future. All of these documents are designed with the intent of making known and honoring patients’ preferences for their care, but in my opinion, they do not take the place of good communications between patients, loved ones, and clinicians. They serve as tools in the process of advance care planning.

For more information:
General information on Advance Directives:
Five Wishes:
POLST paradigm:

One Response to Advance Directives: Nuts and Bolts

  • Terryl says:

    As soon as I was diagnosed with stage IV lung cancer I urgently felt the need to get my “affairs” in order, and for me this included a Durable Power of Attorney for Health care (advanced directives). The best thing about completing this document was the discussion I had with my husband and children. When I first brought up the topic, my Husband did not even want to discuss it. I eventually convinced him that completing this did not mean that I thought I was going to die soon (although at the time I thought I might be…that was 3 years ago), but that should the time come, this would be one less thing for him and our children to worry about. Once he came to accept that it was a good idea (it took about 2 months for him to adjust) filling out the form, reviewing the options, led to discussion of some hard topics. It is done now, filed away with all the right people and something we never have to discuss again. It has given me some peace of mind, mostly because I know I have done what I can to help my family make some tough decisions.

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