Those who kneel before God should never be afraid to stand
The Hardest Decision We Will Ever Make
Why Families Must Talk Before the Crisis. Few decisions are more difficult than deciding what is best for an aging or seriously ill loved one who can no longer speak for themselves. Drawing from my experiences as a Family Nurse Practitioner and from the heartbreaking journey of caring for my own mother with advanced dementia, I share why families must have conversations about healthcare wishes, quality of life, long-term care, and end-of-life decisions before a crisis occurs.
9/3/20269 min read
There are some conversations we avoid because we believe there will always be another day to have them. Unfortunately, life doesn't always give us that opportunity.
During my years as a Medical Provider, I have watched countless families struggle with heartbreaking decisions when a loved one could no longer speak for themselves. I have also experienced that same pain within my own family. Those experiences forever changed how I view aging, end-of-life care, and the importance of planning ahead.
It has been several months since I last wrote a blog. Publishing my two books, On Eagles' Wings and Let Food Be Your Medicine, along with completing my healthcare proposal for Ghana, consumed much of my time. With those projects now behind me, I am excited to return to blogging by discussing one of the most important topics every family will eventually face.
I will begin this blog by addressing the challenges of caring for aging parents and the tremendous responsibility families face when making difficult decisions on their behalf. These decisions are often financial, medical, emotional, and spiritual all at once. They are rarely simple, and even when made with the best intentions, family members may disagree. Sometimes the decisions lead to the desired outcome, while other times they bring unexpected consequences. One thing I remain certain of is this: when our loved ones have placed their lives in God's hands, we can trust that He remains in control, even in the most difficult circumstances.
As a healthcare provider, both during my daily home assessments and in my own practice, I routinely ask my patients two important questions:
"Do you have a Health Care Proxy?"
"Do you have a Living Will?"
Many people mistakenly believe these documents serve the same purpose, but they are very different.
A Health Care Proxy appoints someone you trust to make healthcare decisions on your behalf if you become unable to make those decisions yourself.
A Living Will outlines your wishes regarding life-sustaining treatments, such as CPR, mechanical ventilation, artificial nutrition and hydration, and other medical interventions if you are unable to communicate your preferences.
A Last Will and Testament, on the other hand, has nothing to do with medical care. It specifies how you want your property and assets distributed after your death.
When I ask these questions, I often receive the same response:
"I don't want to think about those things."
"My daughter, son, or spouse will know what to do."
"I don't like thinking about death."
Yet I cannot begin to tell you how many times I have stood in hospital rooms, family waiting areas, and hallways watching loved ones disagree over what should happen next. In my experience, families are divided far more often than they are united. One person wants every possible treatment to prolong life. Another believes it is time to focus on comfort and allow nature to take its course.
These disagreements are heartbreaking, but they are also preventable.
It is essential for individuals to make these decisions while they still have the ability to do so. These conversations should take place long before a medical crisis arises. Knowing your loved one's wishes and having them documented provides clarity, honors their autonomy, and relieves families of unnecessary guilt and conflict during one of the most emotionally difficult times of their lives.
I once heard a physician share the story of a woman with advanced Stage IV cancer who had a very poor prognosis. Although she could no longer speak loudly, her hearing and understanding remained intact. As she lay quietly in her hospital bed, she overheard family members asking the physician to discontinue her pain medication and other treatments.
After her family left the room, she slowly raised her frail index finger and motioned for the physician to come closer. He leaned in until his ear was only inches from her lips so he could hear her whisper.
With barely enough strength to speak, she quietly said,
"Doc... hit me with all you've got. Don't listen to them."
That story has remained with me throughout my career.
I can recount countless experiences from both my professional and personal life involving end-of-life decisions. Some have brought peace. Others have brought lasting heartache.
One of the most difficult involved my own mother: When my elderly mother, who had advanced dementia, suffered an ischemic stroke, she lost the ability to swallow. Our family was suddenly faced with an agonizing decision: should we allow her to pass peacefully, or should we proceed with the insertion of a feeding tube (PEG tube)?
Because of my medical background and years of caring for patients in similar situations, I strongly advised against placing the feeding tube. I understood not only the procedure itself but also the many complications that often follow in patients with advanced dementia.
My family, however, saw it differently. One simple statement outweighed every medical explanation I could offer: This decision was made by an elder sibling. She repeatedly express herself verbally.
"I am not going to let my mother die of hunger." Therefore, feeding tube was inserted.
That decision prolonged my mother's life for seven additional grueling years. From my perspective, she no longer had what I would consider a meaningful quality of life. As both her daughter and a healthcare provider, I often wondered whether those seven years brought more suffering than peace. I could not help but believe that had we allowed nature to take its course, she would have been spared much of what followed.
Because she could no longer eat by mouth, every meal had to be blended and administered through the feeding tube directly into her stomach. What many families do not realize is that inserting a feeding tube is often only the beginning of a long and difficult journey.
I watched my once vibrant mother gradually decline to approximately 78 pounds. The feeding tube became dislodged on numerous occasions, often during routine repositioning. Each replacement in Jamaica cost approximately JA$65,000, placing an additional financial burden on the family.
There were times when the tube slipped out of position, allowing the feeding solution to leak into her abdominal cavity instead of her stomach. Because she was completely immobile, her stomach often emptied very slowly. As caregivers continued feeding her, the stomach could not accommodate the volume, causing the formula to reflux into her esophagus and eventually enter her lungs, resulting in repeated episodes of aspiration pneumonia.
The complications seemed endless. She developed severe constipation and fecal impaction. Pressure ulcers appeared on her buttocks, elbows, ears, and even between her legs where her knees and ankles rubbed together. Contractures gradually stiffened her arms and legs from lack of movement, and foot drop further limited any possibility of normal positioning. Each new complication brought another layer of suffering.
Every time I visited her, I left with tears in my eyes. I prayed continually that God would lovingly call her home and release her from the suffering she endured. It broke my heart to watch someone I loved so deeply remain trapped in a body that could no longer function as it once had.
Looking back, I believe much of that suffering resulted from a decision made with good intentions but without fully understanding the long-term consequences. One family member simply could not bear the thought of "letting Mother die of hunger." While I understand that love motivated the decision, love alone does not always prepare us for the realities that follow.
When my mother finally passed away, her journey became a powerful lesson for everyone who had witnessed her decline. Time and time again, I heard friends and relatives say, "I never want my mother to go through what Ms. Hazel went through." Her experience changed how many families approached end-of-life decisions for their own loved ones.
Although those years were incredibly painful, they never weakened my faith. If anything, they strengthened it. I know that the frail, suffering woman I watched during those final years is not how I will remember my mother forever. My hope rests in God's promise that one day I will see her again—not confined to a bed, not burdened by disease, but whole, healthy, joyful, and radiant in His presence.
Watching my mother's suffering profoundly influenced my professional journey. Choosing the topic for my doctoral dissertation was easy because I had witnessed firsthand the devastating effects that immobility and inadequate preventive care can have on a vulnerable individual.
My doctoral dissertation focused on "The Effects of Education on Pressure Ulcer Prevention in Developmentally Disabled Individuals." My hypothesis was simple: education saves skin, prevents suffering, and improves quality of life. From that point forward, I made it my mission to educate nurses, caregivers, and family members on the importance of proper positioning, skin care, nutrition, and pressure ulcer prevention. I wanted others to avoid the heartbreaking complications I had witnessed with my own mother.
Another decision I frequently encounter—and one that deserves careful consideration—is the promise many adult children make to their parents:
"I will never put you in a nursing home."
Although spoken with love and the best of intentions, that promise can become one of the most difficult commitments a family will ever have to keep.
I understand why many people fear nursing homes. Stories of neglect and abuse receive significant media attention, leaving families with understandable concerns. Unfortunately, these stories often overshadow the many skilled nursing facilities that provide compassionate, high-quality care every day. Like any healthcare setting, there are excellent facilities and there are facilities that fall short. The key is knowing the difference.
Throughout my career, I have cared for many elderly patients with dementia who continued living alone because they refused to leave their homes, while their families felt obligated to honor a promise never to consider nursing home placement. In many cases, the family desperately wanted to help but simply could not provide the twenty-four-hour supervision their loved one required.
This raises an important question:
Is honoring the promise always the safest decision?
Consider the individual living alone with advanced dementia. They may forget they have food cooking on the stove, creating a fire hazard. They may wander away from home and become lost. Some become victims of exploitation, assault, or financial abuse. Others simply cannot remember to eat, bathe, take their medications, or call for help when they fall.
These situations are not the result of families lacking love. Rather, they reflect the reality that love alone cannot always provide the level of care a person requires.
Pressure ulcer prevention is another example.
If a loved one suffers a debilitating stroke and becomes bedridden, around-the-clock care is essential. If the family cannot realistically provide twenty-four-hour care, the consequences can be devastating. Remaining in one position for prolonged periods significantly increases the risk of pressure injuries. In many individuals, tissue damage can begin within just two hours of unrelieved pressure, and those who are malnourished, dehydrated, or medically fragile may develop injuries even sooner.
Pressure ulcers are far more than "bedsores." They are painful wounds that may take months—or even years—to heal. Advanced pressure injuries can lead to severe infections, prolonged hospitalizations, repeated surgeries, overwhelming financial costs, and tremendous physical and emotional suffering.
As someone who devoted my doctoral research to pressure ulcer prevention, I have seen the difference that education and proper care can make. I have also witnessed the devastating consequences when adequate care simply is not available.
My advice to families is this: plan ahead, have the difficult conversations early, and make decisions based on your loved one's needs—not on promises made years before circumstances changed.
Sometimes, the most loving decision is keeping a parent at home with the support they need. Other times, the most loving decision is entrusting their care to professionals who can safely meet those needs twenty-four hours a day.
There is no one-size-fits-all answer. The goal should never be simply avoiding a nursing home. The goal should always be preserving your loved one's dignity, comfort, safety, and quality of life.
None of us wants to imagine the day when we must make life-changing decisions for someone we love. Yet that day comes for more families than we realize. My hope is that this blog encourages you not to wait until you are standing in a hospital room, overwhelmed by emotion and uncertainty, to begin these conversations. Talk with your parents while they are still able to share their wishes. Complete a Health Care Proxy, a Living Will, and discuss what quality of life means to them. Seek wise medical advice, pray for God's guidance, and make decisions based on what is truly in the best interest of your loved one—not out of fear, guilt, or promises made without understanding what the future may hold. As both a Family Nurse Practitioner and a daughter who has walked this difficult road, I can assure you that preparation brings peace. While no decision is ever perfect, making informed decisions with love, compassion, wisdom, and faith will help you honor those who have spent their lives caring for you.
Author's Update
When I originally wrote this article, Before the Crisis had not yet been published. The importance of these conversations—and the experiences I have witnessed both personally and professionally—ultimately led me to explore these issues more deeply in the book.
Before the Crisis was written to help individuals and families prepare for the difficult medical, caregiving, and end-of-life decisions that too often arise without warning. My hope is that it will help families begin these conversations while there is still time to talk, listen, understand one another's wishes, and prepare.
For a more in-depth discussion and practical guidance, I invite you to read Before the Crisis.
https://www.amazon.com/dp/B0HDZ3C42S
Until then, may God grant you wisdom, discernment, strength, and His perfect peace as you navigate one of life's most challenging journeys.
Dr J
