1 week Ago
“She never would have wanted this.” As a nurse, I hear this phrase uttered almost daily as patients are artificially held in limbo while their children, albeit 50 or 60 years old, must make life or death decisions regarding their mother or father. Following a fall, stroke, heart attack, or serious infection, patients are kept alive on machines and medications.
While receiving these temporary treatments patients are bedbound and unable to communicate, leaving important decisions about what happens next up to their loved ones. These stressful situations highlight a family’s vulnerabilities and can be eased with a simple piece of paper. The time is now, before an emergency, to have the explicit conversation to write down what mom wants.
No matter how many times you’ve heard mom shout “I yearn for the urn,” when you’re standing at her bedside and she’s hooked up to tubes and wires it is an awesome responsibility to be the one to pull the plug, according to Betty & Barb, 2024. Despite being an educated state in which 90% of residents hold a high school diploma and 39% have at least a bachelor’s degree, only about a third of residents have completed an advanced directive and are truly informed about their medical decisions, according to the United States Census Bureau, 2023 . Junior physicians with little formal education regarding end-of-life issues and hospital culture can act as deterrents to engaging patients in advanced planning discussions.
Even if your provider has not explicitly had a conversation with you, I urge you to plan your end-of-life preferences now. The mother of the American hospice movement, Florence Wald, founded the first hospice in the United States christened Connecticut Hospice, and located in Branford . Today, Connecticut Hospice is one of many local places a loved one can receive hospice care, at a cost.
The Medicare Hospice Benefit has been subject to fraud across the U.S., which has resulted in strict criteria to qualify and does not cover room or food.
Room and food costs patients between $500 to $1,500 a day, depending on if the patient (or family) hires a caregiver or a nursing facility, according to Hospice, 2024). These costs often leave family members in a tough situation to provide care for their loved one at home (due to costs to pay for caregivers) when they do not have caregiver experience. This creates more stress and distress for family members.
Connecticut ranks 40th in hospice use by state, despite residents aged 60 and older making up 23% of the total population, according to U.S. Centers for Medicare and Medicaid Services, 2021.
In my experience as a nurse, it is rare for a patient to have an advanced directive when they are admitted to the hospital, and I believe this to be the barrier to earlier and appropriate use of the hospice benefit. In 2020, the number of people aged 60 years and older outnumbered children younger than 5 years, this is not the same world our parents and grandparents grew up in. To best prepare our parents, ourselves, and our children to have a peaceful death we must have uncomfortable conversations.
Talk to each other about artificial nutrition (feeding tubes surgically placed in the stomach), ventilation (breathing tubes placed down the throat), chest compressions (pounding on the chest to manually pump the heart, breaking ribs 70% of the time), antibiotics, dialysis, and other topics found on a living will. Decide who will make decisions for you when you are unable to do so, your (medical)‘power of attorney. Understand the role of hospice and what the Medicare benefit covers and does not cover.
Do you want to die at home? Would your family be comfortable caring for you, or can you pay for around-the-clock care? Would you want to be buried, cremated, or something else? Hospice is not a place or a destination, it is a softened journey through the dying process when implemented correctly and a complicated Medicare benefit that needs expansion. To ensure your grace and dignity at the end you must advocate for yourself and begin the conversation with your healthcare team and your loved ones now. Eleanor Dowd is a inpatient hospice and palliative care nurse at Middlesex Health.
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