Starting up a conversation regarding advanced directives and end of life care can be very challenging and at times, very awkward. In family medicine, the topic comes up frequently. Many times, it is not well received by patients, as commonly patients associate the discussion with “giving up” or may think that it implies a clinical condition has worsened.
In my practice, I try to be very open about advanced directives because I am a firm believer in their importance. Many times, I encounter a new patient with a terminal or worsening diagnosis. More common than not, I find that a discussion of advanced care planning has not been broached.
Although difficult, the conversation is paramount. I can recall back to my time during inpatient PA school rotations where expensive, invasive interventions continued to be performed on patients all the way up until their final hours. As a student and future clinician, this bothered me. End of life care was wrought with heart breaking family arguments, emotion, and interventions that were last ditch efforts to prolong life.
In my experience, one of the most meaningful things we can offer a patient with advanced medical problems is a good, painless, on their terms death. Although we are trained to save lives, increase livelihood, there are simply times where our interventions are no longer appropriate and can actually become harmful. One of the most satisfying things for me as a primary care PA is when one of my patients wishes’ are followed during their final hospital stay or on hospice.
The act of advanced care planning involves having a candid discussion about a patient’s values, goals, and medical preferences. (Detering and Silveira, 2018). Advanced care planning can be performed by the patient’s family medicine provider, hospitalist, or specialist. The overall goal is to ensure that if a patient’s condition takes a turn for the worst, their wishes and goals are spelled out to be followed.
As with all forms of healthcare, advanced care planning is on a spectrum. For those who are relatively healthy, a simple conversation about what one might want if there was a sudden change in health status is helpful. In patients with more serious medical conditions, the conversation may be more extensive and focus on many different scenarios. Regardless, the importance remains as health status can suddenly change.
The term advanced care planning refers to the act of having a discussion regarding end of life care in the future. An advanced directive refers to the actual legal document that is filled out with wishes and should be recorded in the patient’s chart. The conversation can be revisited across multiple office visits and should be re-visited if health status changes.
Patient education regarding various care interventions may be very variable based on background. The conversation should be tailored to the patient’s educational status. Prior experiences with a family member may dictate the patient’s goals or opinions. Risks, benefits to interventions should be explained in layman’s terms. For example, instead of explaining the pathophysiology of CPR, one can say “Would you want someone to pump on your chest to try to re-start your heart if it stopped?”
The discussion should be had with patient who is of sound mind and able to make decisions for themselves. Simple cognitive screening tests such as the MMSE (Mini Mental Status Exam) can help assure that cognition is adequate. Patients should be encouraged to appoint a surrogate decision maker, or someone who can help to assure decisions are made with the patient’s values in mind if the patient were to be suddenly incapacitated or unable to make their own competent decisions.
As far as the actual discussion, the patient’s baseline or present health status should be documented. The patient should be asked broadly about their wishes and then more narrowly based on specific interventions. The clinician should gauge what the patient knows about CPR, intubation, etc. A family member may help aid decision making and contribute to the discussion. Education regarding interventions should be offered. With the patient’s permission, decisions should be documented.
The goal of the advanced care planning discussion is to provide a measurable outcome. For example, an advanced directive tool may be filled out related to specific health care interventions. The advanced directive is a measurable, legal way for a patient to document their wishes. The Living Will and Durable Power of Attorney for Health Care are options. The surrogate decision maker can also be identified in these documents.
The benefits to advanced care planning and the completion of an advanced directive are numerous. Studies have shown that patients with documented advanced care planning discussions have higher completions of advanced directives, increased communication with the health care team, reduced hospitalizations toward the end of life, less intensive treatments, increased use of hospice, and increased chance of dying at home.
Communication improvements lead to improved patient care and an additional outcome is that families find themselves more prepared during the end of life process. Lower rates of stress, anxiety, and depression associated with the death have also been observed (Detering and Silveira). The presence of an actual DNR order was associated with increased use of both hospice and palliative care.
Education related to advanced directives is important and fluid with the patient. Patients should be educated that as long as they are of sound decision making, their decision and advanced directive can be changed at any time. The POLST is a Physicians Order for Life Sustaining Treatment and is recognized in 40 states. It is common place for hospitals to discuss end of life care at the onset of a hospitalization, although many times, we are not good at this discussion.
Some studies indicate that up to 70% of geriatric patients complete an advanced directive at some time in their life. Factors influencing a patient to complete an advanced directive may include older age, presence of two or more chronic medical conditions, higher socioeconomic status, prior experience with an advanced directive, or higher level of education. Cultural beliefs may influence end of life care and the choosing of a surrogate.
The document itself may cover CPR, intubations, medical nutrition, artificial hydration, use of antibiotics, life prolonging surgery, or other factors if there is a specific disease present. Each question should be reviewed with the patient and the clinician should assure that the patient understands the different options available, their risks, benefits, and possible outcomes.
The best outcomes associated with the use of advanced directives, POLSTs, and living wills are attained when the patient is part of a patient centered medical home or health community. The decision and advanced directive should be fluid across the primary care office, specialty office, and hospital. As discussed above, the advanced directive may be re-visited yearly, when a condition arises, or when a condition worsens.
The advanced care planning discussion is a notoriously challenging and sometimes awkward discussion. Studies tell us that of patients admitted to the hospital or with end of life conditions, health care providers traditionally do not do a good job completing these. An open, candid conversation about health status, interventions and the patient’s values should be documented and re-visited routinely to assure good end of life care to every patient.
This article, blog, or podcast should not be used in any legal capacity whatsoever, including but not limited to establishing standard of care in a legal sense or as a basis of expert witness testimony.No guarantee is given regarding the accuracy of any statements or opinions made on the podcast or blog.
Detering, K and Silveira, M.J. (2018). Advanced Care Planning and Advanced Directives. UpToDate, date of access 8 July 2018.