Q & A with Julie D. Goldstein, MD
Dr. Goldstein is a palliative care physician who provides advance care planning education throughout the Advocate Health Care system. She chairs the POLST Illinois Task Force, and is certified as a Last Steps State Faculty for the Respecting Choices® Last Steps® Advance Care Planning Facilitator Certification program, which focuses on the POLST conversation. ISMS recently met with Dr. Goldstein to discuss the advance care planning process. (March 2016)
ISMS: In the process of discussing Advance Care Planning, are there different priorities for different patients?
Yes. Advance Care Planning (ACP) can be thought of as three phases, based on where a person is in his or her life. The content and depth of the conversation, who participates, and what documentation is created as a result differs for each phase. By engaging in ACP conversations early and repeatedly throughout adulthood, ACP becomes an expected and anticipated "healthy life habit," and is rendered more normal and less anxiety-producing.
ISMS: What are the three phases, and what conversation and documents are most important at each phase?
In the first phase, for a healthy adult, the most important question we ask is "If you should ever find yourself in a situation, even temporarily, where you cannot express your own wishes to your doctors and nurses, WHO in your life would you trust to represent your wishes in making medical decisions for you?" Once a person answers that question, we should stress the importance of putting that wish in writing in the form of a written Power of Attorney for Health Care (POAHC), which all adults should complete. In addition, because anyone at any level of baseline health can experience a tragic accident or sudden illness, healthy adults should consider in advance what their general attitude would be toward goals for care should they become suddenly neurologically devastated with no hope of meaningful recovery. The statutory Illinois POAHC form describes such a situation and offers people the option of indicating whether they would prefer not to have treatments "to prolong my life or delay my death," or to make the statement that "….I want my life to be prolonged to the greatest extent possible in accordance with reasonable medical standards."
ISMS: What happens for patients who haven't completed a POAHC and become unable to speak for themselves?
When a patient becomes non-decisional and has not completed a POAHC form, the Illinois Health Care Surrogate Act provides guidelines for who can be legally recognized as the patient's substitute decision-maker without having to go to court to apply for guardianship. Careful documentation of this process is required.
ISMS: Does a POAHC require a lawyer or a notary public, or is it something that can be completed right in the physician's office?
In Illinois, the POAHC does NOT require a lawyer nor a notary public. It needs to be signed by a decisional patient, along with a witness; guidance for who the witness can be is on the form itself. So a patient can complete the document in your office. The patient should take the original, give a copy to his or her agent, and a copy should be entered into the medical record. Since EMRs are not universally accessible throughout Illinois, patients should be instructed to carry a copy with them to be able to present at any health care setting in case of emergency. Some people keep a photo of the document in their smart phone files!
ISMS: After this initial planning, when should a physician initiate the next phase of the conversation?
The next phase of ACP comes when a person has a chronic, progressive condition that is starting to be a factor in daily life, by virtue of persistent symptoms, initiation of chronic treatments (such as home oxygen or dialysis) and/or frequent contacts with clinicians – more office and ER visits, multiple hospital admissions, etc. These patients have somewhat predictable trajectories based on their individual disease states, and this is the time for detailed conversations. These conversations should explore their understanding of their illness/symptoms, its impact on daily life, possible upcoming complications and available treatments for those complications, hopes and expectations for the future, general approaches and attitudes toward stressful situations, and prior experiences with serious illness (their own and that of others). This exploration will help patients and their loved ones gain context within which further discussion of specific wishes for treatments of complications related to their illness can occur. Often, patients in this phase are interested in pursuing all available medical treatments should such complications come about, and for these patients it is critically important to further explore when their wishes and goals might change. In other words, at what point might they say "enough is enough" and change the focus of their treatment plan to comfort rather than attempting to sustain life?
ISMS: Who should participate in this next phase of discussions, and what documents are generated as a result?
This phase involves detailed conversations about specific medical information and patient wishes for treatment. Since the discussion anticipates a time when decisions may need to be made while the patient is not decisional, it makes most sense for the patient's appointed agent to be included in the discussion, as the agent may in the future be in the position of having to represent the patient’s wishes in "real time." Clearly, not every possible future situation can be anticipated and decided upon in advance; the effect of the agent being present for these advance care planning discussions is that s/he can become more aware of the patient's goals and wishes, thus enabling him or her to better represent specific patient wishes during a time of crisis. There is no statutory form that is used to document the content of these conversations; clinicians might consider offering patients a copy of their own documentation in the medical record, or the use of an ACP "workbook," many of which are available on-line.
ISMS:And the last step in the ACP process focuses on end-of-life decisions?
The last phase of ACP is geared toward end-of-life decision-making, particularly in emergency situations. All patients in the end stages of their illnesses ultimately die, and the specific mechanisms of dying and treatments that attempt to prevent death are fewer, so this last-phase conversation may actually be less time-consuming and detailed than the middle phase. Sometimes the patient is involved, but often it is just the agent, if the patient has lost decisional capacity. This discussion can also be thought of as the "POLST [Practitioner Orders for Life Sustaining Treatment] discussion," since the focus at this point is on patient preferences with regard to treatments for cardiac arrest, non-arrest emergencies (which likely would lead to arrest if left untreated) such as primary respiratory failure, and wishes for medically administered nutrition, all of which appear on the POLST form. Again, this conversation may take place with just the agent if the patient has lost decisional capacity. The completed POLST form is an actionable order set, and all first responders are obligated by law to follow the instructions on the form. The patient should be given the original, a copy should go to their agent, and a copy should be entered into the medical record. You should instruct the patient to display the document somewhere that paramedics would be likely to see if called to the home in an emergency; many people affix it to their refrigerator, the inside of the front door, or by the bedside.
ISMS: How do I know when it is appropriate to initiate a POLST discussion?
Ask yourself, "Would I be surprised if this patient died within the next year?" If the answer is "No, I would not be surprised," then this is a patient for whom a POLST discussion and consideration of completing a POLST form would be appropriate. Asking ourselves this question allows us to get away from trying to answer the more evasive question, "Is this person 'terminally ill' or 'dying'?" In fact, the literature shows that we clinicians are notoriously inaccurate in trying to answer the latter question; most often, we are overly optimistic.
ISMS: Is it possible to have Advance Care Planning conversations "too early?"
Yes, it is possible to have certain elements of these conversations too far "upstream." For example, most healthy people would want an attempt made to restart their hearts should they suffer cardiac arrest, and so are generally "full code" even without the need to discuss their wishes. Making end-of-life proclamations before there exists a specific medical condition/context within which to make such decisions may be premature, and attitudes often change dramatically once patients are diagnosed and then when their illnesses progress. In any case, expressed wishes must be re-explored whenever an individual's health care status changes; this includes diagnosis and progression of an illness, as well as admission to and discharge from the hospital.
ISMS: Are physicians expected to have these entire conversations with all of their patients?
It seems likely that if physicians had an appropriately focused, robust ACP conversation with all of their patients, there would be no time remaining to provide the necessary balance of medical care. ACP is best delivered by a team. Written and online resources can be used to "prime" patients before discussions; patients can be offered group classes to introduce them to the basic principles of ACP; and office staff can be trained to initiate conversations and assist patients in developing questions that can then be brought to the physician. So, while Medicare reimbursement for ACP is geared only for physicians and/or must be conducted in keeping with collaborative agreements and/or "incident-to" rules, it is best for efficiency to use multiple modalities and an interdisciplinary team to educate patients.