If we lived and died in a perfect world, all our end-of-life wishes would be followed.
If we wanted extraordinary measures, where our doctors do everything possible to prevent our death, that would be done. If we wanted to simply remain as comfortable as possible until the end comes, that would be done.
But we are not in a perfect world, and too many people are taking their last breath without their wishes being followed.
For many of us, when we are creating a will or a trust, our attorney may ask us to do some advance care planning, like completing an advance directive and selecting a healthcare proxy.
Or we may have entered a hospital or a skilled nursing facility and are asked to complete these documents.
Chances are we have not really contemplated what types of medical interventions might be possible. We may not know what type of serious illness or chronic condition may befall us and, as a result, we have not contemplated what the progression of our disease looks like.
We may have made our end-of-life decisions in a vacuum without a real understanding of what an intervention or lack of intervention entails, or how it might affect our functioning in the future.
Chances are, even if we have selected an intervention, we may not have discussed our choices with our healthcare proxy and may not have informed other family members who may also want to be consulted during our time of serious illness.
And chances are that we have not discussed our choices with even one of our physicians, even though the average 65-year-old has seen 28 individual doctors in their lifetime, including primary care, specialists, hospital and urgent care providers.
It’s no wonder that end-of-life choices are not being adhered to.
Advance care planning is an excellent idea, but it takes more than just completing some forms for it to work.
I recently read an article about “serious illness communication,” and it really highlighted to me best practice in thinking, talking and deciding on end-of-life choices.
Serious illness communication has four parts and takes some real homework on the part of the individual and their physician, but the payoffs can be life-changing.
The first step is accessing the patient’s understanding of their disease and condition.
If the physician simply asks the patient to describe what’s wrong with them, this might uncover that the patient has a significant gap in knowledge about their current condition and their disease’s future progression.
Physician, patient and surrogate need to be in alignment on these details, and sometimes that means the physician cannot sugarcoat the prognosis. The patient needs a deep understanding of what is to come to make informed choices.
Oftentimes patients, especially cancer patients with a terminal illness, may ask, “How long do I have?”
The physician may provide a range of time, but that does not fully answer the question. What the patient may want to know is, how long can I function as I am?
When will things change where I may be unable to walk, communicate or eat. That may also inform the patient’s end-of-life choices.
Next, the patient needs to understand their own values and goals. For example, I often hear people say they would never want a feeding tube. However, if a feeding tube allowed the patient to spend another year or two with his young grandchildren, might that be of higher value?
Lastly, the physician, acting as the medical expert, takes all the other information into consideration in making recommendations for the patient’s care. It’s a close, intimate dance between physician and patient, but its rewards allow the patient to spend their final days as they wish, with all the knowledge required to make that choice.
When we hear that physician, patient and family should have “the conversation,” this is what it really means.
Often, we are at a loss as to how to begin or carry out the conversation. Using these four steps as the basis for end-of-life planning might just get us to the wishes we want followed.