The Dark Side of End-of-Life
We recently came across a heartbreaking end-of-life story about a family that didn’t have the proper legal paperwork to follow their grandmother’s Do Not Resuscitate (DNR) instructions.
See https://www.nextavenue.org/lessons-from-my-grandmothers-death/
In this story, author Heather Kokx recounts how Grandma was rushed to the hospital because she had trouble breathing.
- Successful surgery on a faulty heart valve was performed, but there were post-operative complications, and her heart stopped.
- Grandma had signed a DNR order but was resuscitated because, the family learned, someone had not filed the required complete DNR documents with the hospital.
- Grandma suffered for two months as her medical teams tried to keep her alive through intubation, a tracheostomy, and a ventilator hookup. Attempts to unhook her led to destabilization.
- In the following weeks, Grandma moved to a rehabilitation center where she could not speak and was hooked up to machines that kept her alive.
- After two months, nothing more medically could be done, and Grandma (finally) opted to be unplugged. She died the next day at age 82.
The author’s grandparents |Credit: Courtesy of Heather Kokx
Comprehensive Late-Stage Planning
Miscommunications in this story added unnecessary stress to an already painful situation. The cautionary tale amplifies the need for thorough and well-executed late-stage planning for end-of-life conditions.
WFC published a comprehensive guide for late-stage planning and end-of-life care. Some key highlights of how to handle practical aspects of planning:
- Start the Conversation Early
- Seek out Financial and Legal Advice
- Focus on Loved Ones’ Wishes and Values
- Communicate with Family Members
- Make Efforts to Include Children when Appropriate
Other tips covered in the blog include dealing with the more emotional aspects of end-of-life issues, like addressing the genuine need for additional care/assistance, considering the dignity and comfort of the loved one, and grief support.
See: https://westchesterfam.wpenginepowered.com/planning-late-stage-and-end-of-life-care/
Do-Not-Resuscitate Order
The story also reveals the need to know the requirements for DNR execution. GoodRxHealth defines it as:
“A Do-Not-Resuscitate (DNR) order is a legal document signed by you and your provider. It tells emergency and other healthcare providers not to perform cardiopulmonary resuscitation (CPR) if your heart stops or you stop breathing.”
- DNR orders are more common among people whose chance of surviving resuscitation is very low.
- DNR orders fall under the umbrella of “advance care planning”
- Medical care you want to receive when you cannot make decisions for yourself.
New York State regulatory agencies mandate home care agencies to instruct families to complete the NYS-approved DNR order form and update it every ninety days.
See: https://www.health.ny.gov/forms/doh-3474.pdf
WFC and End-of-Life Procedures
WFC diligently carries out the NYS mandate to have clients complete and regularly update a DNR order. We also assist hospitals, if needed, with access to DNR orders and health proxies for all clients.
We understand the importance of planning for end-of-life arrangements, and it begins at the start of our relationship with the client — when WFC’s nurses conduct the client’s initial assessment. The nurses and administrative staff actively coach clients on why discussing end-of-life planning is essential. In particular, WFC nurses are skilled at guiding our families into having a plan and respecting the loved one’s decision on how to handle end-of-life circumstances.
Positive Aspects of End-of-Life
Another light the story shines is on the “off-limits” nature of dealing with death prevalent in our culture. According to the Washington Post, former president Jimmy Carter’s wish to enter hospice care has raised awareness about how families cope with the dying process. Participation of core family members in late-stage planning can yield positive results.
“The decision by former president Jimmy Carter to stop medical intervention and spend his remaining time at home with his family has brought new attention to hospice care.
Hospice care is a form of medical care given at the end of life when medical interventions to prolong life are stopped. The focus shifts to supportive care and helping both patients and their family members cope with the dying process.”
Washington Post, February 21, 2023
“They are at peace”
Jimmy Carter enters hospice care with full support of family, doctors
“Following multiple hospital stays, former president Jimmy Carter decided to forego treatment and spend his remaining time at home with his family.” Patrick Colson-Price, USA TODAY
WFC published a blog in August 2021 about the remarkable story of Boston Globe reporter Jack Thomas who decided to write his obituary upon learning that he had terminal cancer.
“I had a loving family. I had a great job at the newspaper. I met fascinating people, and I saw myriad worldwide wonders. It’s been full of fun and laughter, too, a really good time.
I just wish I could stay a little longer.”
He wrote eloquently about how he planned to go through his end-of-life chapter: “Do the things you love and enjoy them.” He died fifteen months later.
See: https://westchesterfam.wpenginepowered.com/end-of-life/
Length of Life VS. Quality of Life
Committing to thoughtful end-of-life care makes one more of an active participant. It involves understanding what’s important to the loved one and what (s)he is willing to tolerate to keep those values through end-of-life. For instance, physicians are not trained to ask what is essential in the patient’s life. They are trained to keep you alive. When those essentials are removed, as in the last two months of Grandma’s ordeal above, it may be time to consider the peace of mind that comes with pulling the plug. The loved one may decide that quality of life preempts length of life.
Westchester Family Care is an independent in-home care provider specializing in making the home a safe and accommodating place for your aging family members, no matter the condition.
We have an extensive network of professionals and issue-specific specialists ready to help you maintain a healthy quality of life.
Contact WFC for an immediate family need or when planning for future needs: