Taking End of Life into Your Own Hands

Individuals prefer to make their own end-of-life decisions separate from government laws or interventions. Health care reform is in the press and arguments about whether the government’s idea of rationing “will kill grandma” has delivered a great deal of controversy. 

Studies of healthcare in England place a value on the last year of life at $45,000.  If the care required by an individual exceeds this amount, whether or not they will receive additional care is debatable.

Talking About Dying is Uncomfortable

To be totally honest, who wants to talk about dying?  Presentations about death or dying result in empty rooms and conference halls. 

Avoidance and denial represent the crux of the issue. Do consumers avoid end-of-life care discussions until the last minute–when decisions have to be made–resulting in government intervention and control? 

Would consumers or patients feel more in control if end-of-life discussions occurred more frequently? Only 30% of Americans have living wills. 

The Importance of Living Wills

This means, for those of you without a living will, if you become seriously ill and end up on life support there is no one to make decisions for you. No one with the legal power to turn off the machines that keep you artificially alive.

And since you will be unable to speak up, your life will be preserved by lifesaving treatment like antibiotics, feeding tubes, or being placed on a ventilator. Life-extending treatments are the opposite of what most individuals desire, but talking about this or putting wishes in writing is put off until tomorrow or “when I have more time.”

Extending Life Without Quality of Life

No one knows how much time remains in life. The role of physicians is generally to provide treatment that extends life.

But what if you have a terminal illness or are in chronic pain  To what extent do you want to extend your life if the quality of life is missing? 

What if you can’t do activities you enjoy? If you spend more time feeling bad than good? If every day takes more effort than you want to give because of health problems. 

Do physicians contribute to these issues because they avoid end-of-life discussions? Clients with whom I have worked experience health declines but have little knowledge of what is really wrong. Others may know the cause of health issues but be in denial about the consequences. 

Part of this may result from patients not listening or asking questions of a physician who might be dancing around an end-of-life discussion. There are also circumstances where multiple physicians are involved but are not coordinating care discussions.

When physicians become a care team patients can learn about their condition and the possible outcomes to make decisions about palliative or hospice care. Not discussing these issues takes decision-making away from patients.

Palliative Care and Hospice Care

This leads us to the “P” and “H” words that family caregivers and individuals needing care may be uncomfortable discussing. Palliative care is still relatively unknown and involves managing chronic pain.

Palliative care is often a precursor to the other word no one wants to hear – the “H” word, hospice.  If someone is receiving hospice care this means their body functions are progressing toward death usually within a six-month time period. 

While every body will eventually die. Facing this reality can be emotionally challenging. 

End-of-Life Care Choices

It takes a strong person to make end-of-life care choices that are not influenced by family members or friends. Many subject themselves to months of experimental treatment, radiation, chemotherapy, or surgery that has little chance of success because loved ones plead with them to keep trying.

My brother and my father-in-law, diagnosed with leukemia and cancer, went through months of treatment that made them extremely ill. On the other hand, one of my best friends went through clinical trials and research to help others with a similar genetic condition.

The Costs of Not Discussing End-of-Life Care Options

Let’s look at statistics regarding costs, delayed decisions, and the inability of medical providers to talk about the likelihood of death. 

• According to CMS, Medicare recipients who die account for 28% of all costs to the Medicare program in the last two months of life. 
• A Harvard study of advanced cancer patients who did not have end-of-life conversations with their physicians incurred a cost of $2,917 in the final week of life versus a cost of $1,876 for patients who had the conversation about death. 
• Statistics indicated that the treatments received by the more expensive group did not improve their quality of life or extend their life. 
• A simple conversation about end-of-life care resulted in a cost reduction of $1,000 per week with the same outcome. 

Why Are End-of-Life Conversations Delayed? 

How many individuals lingered in pain, misery, or uncertainty at end of life because they are unaware that counseling about their options exists? How many do not have a living will?

How many lives are extended because there was no one to help make decisions or ask questions? How many participated in experimental studies or endured months of chemotherapy or radiation that did not change the outcome? 

I don’t know anyone who wants to die a painful, indecisive death yet only 30% of us have plans in writing so that this doesn’t happen. Rather than being afraid of an uncertain end, why not create a living will so that your wishes for care become reality? 

©2012, 2013, 2022 Pamela D. Wilson.  All Rights Reserved

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