Respecting Another's Quality of Life Choices

Everyone Has A Unique Life Story

"Did I ever tell you the circumstances of my father's death?" my friend asked as we crossed town after a dinner gathering. Remarkable stories always pepper my time with "Sarah" (I'm changing her and her parents' name for privacy) and so, while I navigated traffic, she began. "My father, "Roger", was a brilliant man..."

She told me of his specialization in probate law and how, once retired, he served as a skilled volunteer arbitrator. By the age of 81, Roger's occasional falls had waved a red flag of increasing frailty--not an easy situation for his 81-year-old wife, "Beth", who enjoyed retirement from criminal court reporting. A few months before the historic tragedy of September 11th, Roger had another fall, rupturing an undiagnosed cerebral aneurysm. While he lay unconscious in the hospital, Sarah and her husband flew to join her mother and sisters. She remembered: "Surgery was advised but offered a frightening prognosis: Dad had a 50/50 chance of some recovery by stopping the bleed but he would remain frail and bedridden. There was equal potential for severe brain damage requiring total long term care."

What Is Quality Of Life?

Sarah recalled that her parents' rabbi had distributed a document to the congregation, titled: Ten Factors of Quality of Life. It was a simple checklist with hypothetical questions such as Can you live with or without_____? A similar list can be found online:

1. Physical Health: Managing chronic pain, maintaining energy levels, and getting good rest.
2. Mental Well-being: Experiencing positive feelings, low distress, and good emotional stability.
3. Financial Resources: Having enough money and financial security for basic needs and comfort.
4. Personal Relationships: Maintaining strong connections with family, friends, and a romantic partner.
5. Work and Occupation: Finding job satisfaction and stable employment.
6. Environment and Housing: Living in a safe physical space with clean surroundings and reliable transport.
7. Leisure and Recreation: Having time and opportunities to pursue hobbies and relax.
8. Independence: Maintaining mobility and the ability to perform daily activities without heavy dependence on others.
9. Personal Growth: Having access to education, new skills, and self-improvement.
10. Life Purpose: Possessing personal beliefs, spiritual values, or community goals that give life meaning.        [Source: www.sciencedirect.com] 

Sarah affirmed: "As heart wrenching as it was for my family, my mother---who had enjoyed nearly 50 years of marriage---was insistent: no surgery. We were in 100% agreement and there was no debate: Roger, my father, had impressed upon us all that quality of life was more important than simply 'being alive'."

Fear or Freedom?

(Author image)

At that time, the popularity and utilization of Advance Directives and Living Wills by most Americans was very low. In a year 2000 study, National Institutes of Health cited only 47% of adults age 60+ had advance directives. The 1998 sensational trial and controversy of Dr. Jack Kevorkian over his advocacy of assisted suicide for persons with terminally illness frightened most people. Denying death was clearly a strong societal norm. I was appalled as Sarah described how her mother and sisters were required to sit before the hospital ethics committee and be grilled with questions like: How can you not allow surgery? There's a 50% chance of success so why not try? How can you put this man to death? Sarah remembered, "The panel of four men just hammered each of us with tremendous guilt accusations. It was like being prosecuted for a crime." 

Sarah's family was part of a small but growing number of people examining and fighting for their right to make quality of life decisions. They were not informed of their Right to Decline:

The AMA states that a surrogate decision-maker is entitled to the same respect as the patient. Because a competent patient has the fundamental right to refuse any medical intervention, an authorized advocate or proxy holds that same right to decline or withdraw treatment if the patient loses decision-making capacity. There is no ethical distinction between refusing a treatment before it starts (withholding) or stopping a treatment already in progress (withdrawing).  [Source: AMA Code of Medical Ethics]

Trusting, With Love

Although Beth and her daughters felt so strongly that they knew Roger's wishes about quality of life factors, Sarah admitted, "My mother had the maturity and insight of having lived through other relatives' deaths, but it was extremely distressing for my sisters and I; here was our beloved father, dying! How did we know ours would be the right decision?"

Finally, Roger was allowed a natural death but the hospital indicated he would need to be moved. No chaplain or social worker appeared with guidance and support through the family's crisis. Fueled by her intuition, Sarah insisted, "He's dying, give us one more day!" Four days after he was admitted, Roger died. "We shifted gears to plan my father's funeral, remembering what a great man he was, and so grateful he had not suffered," Sarah reflected. Comforting Jewish traditions and non-judgmental condolence helped heal the grieving family.

Will You Offer Comfort or Judgment?

The Condolence Coach has repeatedly cautioned: don't judge. Sarah suggested that the circumstance of her father's death should not change the basics of sympathy offered. Unless your friend initiates a conversation about the circumstances of the death, stay in the present moment and don't pry. So what are the basics of a comforting condolence?

• Say you are sorry for the loss; if difficult circumstances are shared, just say again: "I'm so sorry." 
• Personalize the condolence by using the name, the relationship, or other known aspects of connection between the deceased and the grieving person. 
• Ask (or write): "What memory of him/her are you holding close right now?'
• Be a good listener.
• Do not offer an "I had a similar experience" story unless it was clearly similar. Hijacking a condolence conversation to focus on yourself is a big pet peeve of grieving persons.
• As a condolence conversation winds down, recognize that discussing grief takes a lot of emotional effort, and offer: "Thank you for sharing this with me." 

If You Are Asked to Be A Patient Advocate

I asked Sarah what she feels is most important when you are the person responsible for advocating another's end of life wishes. She emphatically stated: "Understand their wishes to the best of your ability--even if your own differ; and honor them! Get past your own ethics and if you cannot, ask to be replaced as healthcare advocate." She continued, "My Dad's story just solidifies my own opinion about an individual's right to die. My sisters and I have repeatedly discussed our own wishes; I know mine will be honored."

(Author image)

Have the Conversation...And From Time to Time, Have It Again!

CaringInfo.org offers many resources to begin exploring quality of life and end of life choices for yourself or with a loved one. They offer a directory of links to legally valid advance directives and living will documents for most of the United States, and advise: "Open, honest conversations about end-of-life will relieve loved ones and healthcare providers of the need to guess what you would want if you are ever facing a healthcare or medical crisis. These conversations – initiated by the patient or by those caring for them – form the basis for any written expression of wishes such as an advance directive."  

Thank you for caring...and sharing!