A 'good' death requires honest conversation

Posted Monday, Apr. 08, 2013  comments  Print Reprints
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The Conversation Project: theconversationproject.org

National Healthcare Decisions Day: www.nhdd.org

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This year, 2.4 million people will die in the United States. Nearly 1.7 million of them will die in a hospital setting. This is not where most of them want to spend their final days.

Surveys show that, if possible, 70 percent of Americans would prefer to die at home. So why don't they?

For all of its cost and access problems, the healthcare system available in the United States is still the best in the world. But as medical technology has advanced, our expectations have increased.

Medicine has become so adept at keeping people alive that many terminally ill patients don't even know they're dying. Thus, it's difficult for patients and families, once they start down the road of aggressive interventions, to know when to say when.

Death used to be familiar, public, an understood part of life. For many conditions, the length of time between diagnosis and death was brief. Because there were few treatment options, a patient who developed a terminal condition, especially if they took a turn for the worse, stayed at home while family, friends and clergy came to the bedside to begin the vigil ultimately leading to death.

Today, we have the ability to take what once was the beginning of an imminent end and make it merely the proximal bump on a long and often very bumpy road.

Now, when terminally ill patients take a turn for the worse, they don't stay home, they go to the ER, the portal to the American healthcare system where death is viewed as failure, an enemy to be defeated or simply an option.

In the absence of clear instructions otherwise, medicine's default position -- even for those people known to be terminally ill -- is to prevent death. Too often, the patient dies in the ICU, surrounded by computerized machines and unfamiliar people instead of at home, surrounded by the family and friends who have loved them and shared their lives.

Something needs to change.

When a 2011 study examining hospital transitions for the prior decade showed an increase in the number of patients dying while in hospice care, it appeared something was changing. But a closer analysis revealed a disturbing trend. More people were dying in hospice, but at the same time hospital and ICU utilization spiked in the last month of life.

In other words, patients with terminal conditions received aggressive but futile interventions that kept them alive long enough to arrange a hasty transfer to hospice, where they died, often within days. Is this a good death?

Researchers who study death agree that an important component of a good death is the patient's ability to control the process: where they are, who they're with and what is done to care for them in their final days. This can be achieved, and it's not that hard. It begins with patients having conversations, kitchen-table talks with family and the close friends who may be called upon to speak for the patient should he or she become unable to speak for himself or herself.

Starting these conversations is the hardest part, but often once they get started patients find that others want to talk about it, too.

Possible discussion starters can be as simple as: "I need your help with something," or "I was thinking about what happened to ____, and it made me realize..." These conversations should be updated as conditions change and should cover both what the person wants and doesn't want.

An important part of any advance care plan is completing an Advanced Directive. This legal document puts into writing a person's desires.

Forms are available at many healthcare facilities and at the Texas Hospital Association's website. Although these are legal documents, they do not require a lawyer to complete.

National Healthcare Decisions Day is April 16.

This initiative was established to "encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes."

Although the campaign targets one day to make the point, it's important to remember that every day is a possible day to have a conversation.

By taking these important steps, patients can ensure that, when their time comes, they will still be the ones making the decisions and that even in the end they will die as well as they lived.

Stuart C. Pickell is a primary care physician and Presbyterian minister who lives in Fort Worth.

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