March 19, 2016

End of Life, Part 1

Mary MahoneyBY Mary Mahoney

J. Robinson Group Blog

This post begins a four-part series exploring end-of-life issues. Part I looks at how religion, cultural shifts and the doctor’s role influence attitudes and choices about death. Part II looks at how and where people die and the controversy over physician-assisted suicide. Part III covers options for end-of-life care, from assisted living to hospice.  Part IV provides a guide to taking control over the last phases of life through health directives.

Stairway to Heaven

Modern America isn’t prepared for the one thing everyone on the planet is guaranteed to experience: Death. Nobody likes to dwell on the end of life. But it’s a topic that everyone should think about, because there can be a big difference between what we expect and what may actually happen.

For example, many people who face certain death due to a terminal illnesses suffer unnecessarily at the hands of medical professionals.

An article published in The Journal of the American Medical Association entitled “Death, Dying, and End of Life,” observes that patients with terminal cancer typically receive aggressive treatment despite evidence it does not alter the course of the disease, does not improve the patient’s quality of life and fails to lessen grief experienced by the family. Additionally, while “most people prefer to die at home, surrounded by loved ones, most die alone in hospitals.”

Not only do such patients suffer, but their care consumes an inordinate amount of money.

A JAMA editorial on intensive medical care and end of life care argues that “one in five dying patients receive ICU care … with no clear benefit of life expectancy … and it contributes to the fact that a quarter of Medicare dollars are spent on a patient’s last year of life.”

Doctors are caught in the middle. The ethics manual published by the American College of Physicians holds that “The physician’s first and primary duty is to the patient.” But many doctors are not trained specifically in the nonclinical end-of life care, such as palliative care. Also, many worry that failure to treat patients aggressively will expose them to liability claims.

The doctor’s mission is to heal and save lives. Unfortunately for patients with terminal diagnoses, aggressive treatment doesn’t help. Patients tend to believe caregivers should do whatever it takes in an attempt to save their lives, that high-tech, advanced medicine may offer a miracle cure.

If it isn’t already, the issue of death and dying soon will become an intense focus of the aging Baby Boom generation. According to the U.S. Census, the older population is projected to more than double from 40.3 million in 2010 to 83.7 million in 2050, with the steepest increase occurring between 2010 and 2030.

Key to this issue is control: How can anyone dictate how they are treated if they already are beset by multiple, concurrent health conditions, physical weakness and dementia? By that time, it may too late. They may not be able to express what they want.  Even if they can, a family member may usurp control of their life through power of attorney.

Given the inevitable, it’s surprising that more aging Americans haven’t already addressed the issue. A study conducted by the Pew Research Center and published in the The Huffington Post says that only a quarter of those aged 75 and over have given much thought about end of life choices and treatment.

But when asked their wishes, a little over half of adults said they would stop medical treatment if there is no hope of survival and they were suffering a great deal of pain.  At the other end of the spectrum of opinion, one-third of those surveyed by Pew said they would do anything to hang onto life.

The study also reports that 62 percent of Americans said they believe in their moral right to commit suicide.  But opinions are split on physician-assisted suicide.

Opinions also differ by race, according to the Pew study. Only 26 percent of white U.S. adults would ask their doctors to do everything possible to save their lives if they had a disease with no hope of improvement and were suffering a great deal of pain, compared with 61 percent of black adults.

Western attitudes towards death have changed over time. French historian Philippe Aries wrote one of the earlier and best-known histories on death and dying, covering 1,000 years. A reviewer summarized his observations as a “gradual replacement of community-oriented personal identity with today’s radical individualism; and the gradual sequestration of death to a position behind the scenes, so that dying and death become remote from ordinary experience.”

Western society has come to reject death, both spiritually and practically. In doing so, society has made death a taboo.

This contrasts with the attitude of Eastern cultures, as described by Dr. Sok K. Lee in The Permanente Journal: “Chinese culture recognizes heaven, fate, and spirit but anchors the existential perspective on family life, whereas Western culture looks to God for individual salvation.

“East Asian people believe that through family names and rituals, they are able to keep their spirits alive symbolically.”

Elisabeth Kübler-Ross, in her book “On Death and Dying,” observed what dying patients can teach doctors, nurses, clergy and their own families. She identified five stages of dying: Denial, anger, bargaining, depression and acceptance. Her writings are credited with helping to improve the American hospice system.

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