What does advance care planning involve?
Advance care planning is the process of understanding one’s medical condition and beginning to think about and discuss the type of medical care desired in the future, particularly toward the end of life. One important outcome of that process is a written document, the advance health care directive, sometimes referred to as a power of attorney for health care. All adults should have such a document in place, and they should engage in advance care planning if they have any significant medical condition or chronic illness. Advance health care directives should be reviewed and updated as needed on a regular basis, and patients should be sure they discuss their preferences with the person they designate as their decision-maker.
What issues are addressed in an advance health care directive?
UCLA has developed its own advance health care directive for patients, though we honor advance directives established elsewhere. Unlike most others, ours starts with questions about patients’ values and goals regarding future care before asking them to appoint a decision-maker to address any question not covered by those answers. The questions don’t focus on specific treatments; rather, they address the results of treatment. Patients are asked whether or not they would want to receive medical treatments designed to keep them alive if they knew, for example, that they wouldn’t be able to recognize family and friends or that they would be living with severe pain or discomfort. Doctors have a pretty good idea of whether or not certain treatments can achieve particular outcomes, but what they don’t know is what outcomes are acceptable to the individual patient.
How do patients access these documents?
Beginning this October, our patients’ advance health care directives are being made available for them to review on their myUCLAHealth account; the form can also be downloaded, printed and either updated or filled out for the first time and presented to their physician.
Is there a potential downside to having an advance health care directive?
No. But there are tangible advantages. Patients and sometimes members of their family will differ on goals and the kinds of treatments they would want, especially when they are very sick and nearing the end of life. Advance care planning encourages important conversations about these matters while patients can participate, and it spares loved ones a great deal of potential anguish. So it is not uncommon for us to hear family members say that if only they had discussed these issues earlier, these very difficult decisions about treatment would have been much easier.
Is there a document used for patients who don’t want certain life-sustaining treatments?
Some seriously ill patients don’t wish to receive aggressive medical care designed to keep them alive in their current health state. In California, these patients can prepare with their physician a separate document called Physician Orders for Life-Sustaining Treatment, or POLST, to specify treatments they do not wish to receive. When undertaking such a step, patients should have a conversation with their physician about the specific circumstances in which they would want treatment to focus on comfort and other goals other than extending the duration of life.
Where do there tend to be significant differences in the types of care patients want to receive when they are incapacitated?
Most healthy people are willing to receive burdensome care that can return them to their healthy state, but many very ill patients don’t want those highly burdensome treatments at the end of life. The most significant differences in attitude toward burdensome treatment occur in regard to how much of a burden individuals are willing to tolerate for small improvements in their health. The advance care planning process is an opportunity for people to begin thinking about what they would want and to express it in writing, as well as verbally with physicians and family members. We want to make sure that patients’ preferences endure.