Is There a Right Time For End-of-Life Planning?

You don’t realize it’s the last breath until the next one never happens. At least, that has been my experience when watching someone die, pass away or, in medical terms, expire.

We typically don’t think about breathing, either our own or that of others. It’s similar to the effect one gets when there is a power failure in the middle of the night–you’re alerted to the power failure by the sudden silence. All those hums and rumbles from refrigerators, furnaces, and humidifiers abruptly shut down, and the silence is audible. This has been my experience when patients take their last breath.

The Silence After the Accident

I’ve seen this play out in multiple scenarios. Early one morning, on my way to work, I stopped at the scene of an accident that had just occurred. There were two other people who had stopped as well. It was a single car accident, the driver having fallen asleep at the wheel (no alcohol involved), having driven straight when the road curved left. The car struck a tree head on, splitting the front of the car and tossing the engine 50 feet away, still smoking.

The tree never budged. Inside was the driver, whom we could not reach, or even see amongst the twisted metal. But we could hear the gurgling, gasping sounds of desperate breathing: involuntary, labored, and ineffective.

Then the sound stopped. That eerie silence telling you it’s over.

An Embattled Silence Without End-of-Life Planning

Dissolve to the scene in an ICU in which an 85-year-old man lies in a bed with the surrounding ICU team. Some family members are there; others have chosen not to be. They choose not to be there due to a bitter battle over end-of-life issues.

Did the man want to be kept alive at all costs and by any means possible, particularly given the fact that a meaningful recovery from a massive stroke was out of the question? Did he want all measures—the breathing tube, the feeding tube, and the intravenous life-sustaining medications—withdrawn, except for comfort measures to relieve any pain?

In the absence of any directives provided by the patient, a battle ensues among family members, some of whom mysteriously appear after years of estrangement, and the determination eventually plays out in court—a ruling in favor of treatment withdrawal. The tubes are removed, the IV drips shut off, and an hour of gradually diminishing breaths culminates in that final breath and subsequent silence.

An Easier Silence Due to End-of-Life Planning

Like a ghost from A Christmas Carol, let me transport you to an additional scene: a family sitting around a loved one, my patient, a 48-year-old woman, who is dying from terminal laryngeal cancer. She is in a large, private room in my community hospital. The palliative care team is present for support. Her directive is clear: no extraordinary measures, no tubes, and no additional treatments.

She has had many treatments for the cancer, including some experimental protocols, so certainly there has been a valiant effort to beat the cancer. Those efforts have fallen short, and with that realization, the patient has agreed to let life run its final lap.

Although the patient is now in a coma and taking those last breaths, the end-of-life plan was spelled out. A living will, a health care proxy, and a MOLST form have all been prepared, are legally binding, and clearly define the patient’s wishes. MOLST forms—Medical Orders for Life-Sustaining Treatment—are typically used for patients in their final year of life. They are filled out by the patient and provider, and must be signed by the provider to be legally binding. Also known as POLST (Physician Orders for Life-Sustaining Treatment) forms, these vary slightly from state to state but are readily available online here and here.

Such end-of-life planning can obviate the anguish families often face when such decisions have not been spelled out—anguish that is mounted upon a time of grief and sadness. I’ve noted that patients and families who have defined end-of-life planning are at much more peace when end of life occurs, and are perhaps better able to celebrate the person’s life without the stress of guessing what that person would have wanted as they approached death.

Terri Schiavo and Karen Ann Quinlan

Many may remember the legal struggle in the Terri Schiavo case, a struggle that spanned fifteen years (1990-2005). However, I’m old enough also to recall the case of Karen Ann Quinlan, well publicized in the 1970s. Quinlan, in a persistent vegetative state, was on a ventilator. Doctors refused to honor the request of her parents to take her off the ventilator, leading her parents to file a suit in September 1975 to cease what they saw as extraordinary means of prolonging her life.

Such cases have forced us to scrutinize appropriateness of life-sustaining treatments, not only from the vantage point of the providers, but more importantly, from the perspective of the patient.

Discussing end-of-life measures and developing health care proxies, living wills, and MOLST forms is difficult, because it reminds us of our own mortality. While a MOLST form is something we create in what is expected to be a final year of life (indicating that some terminal event is anticipated, perhaps even simply related to old age), other methods of indicating our end-of-life wishes can be prepared at any time.

In the cases of Terri Schiavo, age 26 at the time of her cardiac arrest, Karen Ann Quinlan, age 21 when she entered her persistent vegetative state, and the young driver in my second paragraph, age 20, the patients certainly would have been unlikely to have end-of-life planning in place.

The Right Time for End-of-Life Planning

I don’t know when, or if, there is an absolute right time to develop such plans, but sooner rather than later seems to be a good start. I’ve purposely left cost out of this discussion, although I can’t help being reminded that, in 2012, it was reported that $125 billion was spent on care near the end-of-life; 20 to 30 percent of the Medicare budget is spent on treatments for beneficiaries in their last year of life, and some have considered that 20 to 30 percent of such treatments may have had no meaningful impact.

Death is a part of life. Cliché, yes, but that simple statement is the tip of an iceberg of potential anguish, legal battles, and familial discord that can be avoided if we are willing to face our own mortality, and to take time to plan and prepare.

Watching a loved one die is painful, but we can celebrate that person’s life in so many ways, including respecting their wishes regarding end of life. Then, when the last breath is followed by that inevitable silence, the rest of us can breathe with our own relief in knowing  we have seen that life through to its desired conclusion.

 

My book, Do the Right Thing: A Surgeon’s Approach To Life is now available on Amazon! Read an excerpt here.

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