When someone mentions dialysis, most people think of it as a life-saving treatment that sick people “have to have.” This is not true. Dialysis is artificial life support—a machine doing the work your kidneys can no longer do. Just like any other form of life support, you have the right to say no.
You Have Choices When Your Kidneys Fail
Imagine being told your kidneys are failing and you need dialysis to survive. Most doctors will present this as your only option, but you actually have two clear choices:
Choice 1: Accept artificial life support (dialysis) and hope for a kidney transplant
Choice 2: Choose comfort care and hospice for a natural, peaceful death
Neither choice is right or wrong—they are simply different paths based on your personal values about quality of life versus quantity of time.
The Reality Behind the “Bridge to Transplant” Promise
Healthcare providers often describe dialysis as a “bridge to transplant”—temporary support while you wait for a new kidney. This sounds hopeful, but the statistics tell a different story:
Over 90,000 Americans are currently waiting for kidney transplants
Only about 25,000 kidney transplants happen each year in the United States
Most patients will never receive a kidney transplant
The average wait time is 3-5 years, and many patients wait much longer
What this means in real terms: You could spend years—possibly the rest of your life—connected to a dialysis machine, waiting for a kidney that may never come.
The Suffering That No One Talks About
Sarah, a 68-year-old grandmother, started dialysis three years ago. She spends 12 hours every week sitting in a dialysis chair, unable to move freely. After each session, she’s so exhausted she can barely walk to her car. She spends the next day recovering, only to return to the chair again.
“I thought I was choosing life,” Sarah says. “But this isn’t living—it’s just existing.”
This is the reality of dialysis that most patients don’t understand before they start. It’s not a cure—it’s artificial life support that comes with significant costs to your daily life, energy, and independence.
Breaking Free from the “You Have No Choice” Myth
The medical system has trained us to believe that refusing life-prolonging treatment means giving up hope. This is false. Choosing comfort care and hospice means:
Prioritizing quality time with loved ones
Maintaining your independence and dignity
Focusing on comfort rather than medical procedures
Making decisions based on your values, not fear
You have the power to choose how you want to spend your remaining time. Some people choose the dialysis chair and the hope of a transplant. Others choose their own living room, surrounded by family, free from machines and medical appointments.
Both choices deserve respect, but only you can decide which path aligns with your values and definition of a life worth living.
The key is making this decision before you’re in crisis, when you can think clearly and discuss your wishes with the people you love.
Understanding Chronic Kidney Disease: The Path to Difficult Choices
What is Chronic Kidney Disease?
Think of your kidneys as your body’s filtration system—two bean-shaped organs about the size of your fist that work 24/7 to keep you healthy. Your kidneys are incredible multitaskers:
Filter waste and toxins from your blood (like a sophisticated coffee filter)
Balance fluids in your body (preventing swelling and dehydration)
Control blood pressure by managing salt and water levels
Produce hormones that help make red blood cells and keep bones strong
Maintain the right chemical balance so your heart and muscles work properly
Chronic Kidney Disease (CKD) occurs when the kidneys gradually lose their ability to perform these functions. It’s called “chronic” because it develops slowly over months or years, often without obvious symptoms until significant damage has occurred.
The Five Stages of CKD: A Simple Guide
Doctors measure kidney function using a number called GFR (Glomerular Filtration Rate)—think of it as a percentage showing how well your kidneys are working compared to healthy kidneys.
Stage 1: Kidney Function 90% or Higher
Your kidneys work normally, but may show signs of damage
No symptoms—you feel completely fine
Action needed: Monitor and protect your kidneys
Stage 2: Kidney Function 60-89%
Mild decrease in function with some kidney damage
Still no noticeable symptoms
Action needed: Slow the progression with lifestyle changes
Stage 3: Kidney Function 30-59%
Moderate decrease in function—kidneys working at half capacity or less
You may start feeling tired or notice swelling
Action needed: Manage complications and prepare for future decisions
Stage 4: Kidney Function 15-29%
Severe decrease in function—kidneys barely working
Symptoms become more obvious: fatigue, nausea, difficulty concentrating
Action needed: Plan for kidney replacement therapy or comfort care
Stage 5: Kidney Function Below 15%
End-stage renal disease—kidneys have essentially stopped working
Life-threatening without intervention
Decision time: Choose artificial life support or comfort care
When Kidneys Stop Working: Your Options
When your kidneys reach Stage 5, you face a critical decision point. Your kidneys can no longer sustain life, but this doesn’t mean you have only one choice. Let’s explore what happens next:
Understanding End-Stage Renal Disease
Maria, a 72-year-old retired teacher, learned her kidney function had dropped to 8%. Her doctor explained that without her kidneys working, toxic waste would build up in her blood, her body would retain dangerous amounts of fluid, and she would eventually fall into a coma.
“The doctor made it sound like I had to start dialysis immediately,” Maria recalls. “But when I asked more questions, I learned I actually had choices about how I wanted to handle this.“
The medical reality is straightforward: When kidneys fail completely, the waste and excess fluid that normally gets filtered out will accumulate in your body. Without intervention, this leads to a peaceful, natural death within days to weeks.
Choice 1: Artificial Life Support (Dialysis)
Dialysis means choosing to have a machine do your kidneys’ work. This artificial life support comes in two main types:
Hemodialysis (Most Common)
4 hours, 3 times per week in a dialysis center
Large needles are inserted into your arm or a surgically created access point
Your blood travels through tubes to a machine that filters out waste and excess fluid
Total time commitment: 12+ hours per week, plus travel and recovery time
Peritoneal Dialysis
Done at home using your abdominal cavity as a filter
Requires inserting a permanent tube into your abdomen
4-6 exchanges per day, each taking 30-60 minutes
Total time commitment: 6-8 hours daily of your life
What Choosing Dialysis Really Means
If you choose dialysis, here’s what you’re committing to:
Indefinite treatment—possibly for the rest of your life
Significant time restrictions and loss of freedom to travel or be spontaneous
Emotional challenges, including depression and anxiety
Financial burden, even with insurance coverage
Remember: You can stop dialysis at any time. Starting dialysis doesn’t mean you’re committed forever.
Choice 2: Comfort Care and Natural Death (Hospice)
Choosing comfort care means deciding not to use artificial life support and instead focusing on quality of life during your remaining time. This choice involves:
Hospice Care Benefits:
Pain and symptom management to keep you comfortable
Support for your family during this difficult time
Care in your own home or a comfortable setting of your choice
Focus on meaningful time with loved ones rather than medical procedures
What Natural Death from Kidney Failure Looks Like:
Gradual, peaceful process over days to weeks
Sleepiness and decreased appetite as toxins build up naturally
Minimal pain—kidneys failing doesn’t typically cause significant discomfort
Surrounded by family in familiar, comfortable surroundings
Making an Informed Decision
Tom, a 68-year-old veteran, chose comfort care after watching his brother struggle with dialysis for two years. “My brother lived for dialysis, not despite it,” Tom explains. “I wanted my last months to be about my family and my garden, not about being hooked to a machine.“
Key questions to ask yourself:
What does quality of life mean to me?
How important is maintaining my independence?
What are my goals for my remaining time?
How do I want to be remembered by my family?
Taking Action: Preparing for This Decision
Don’t wait until you’re in crisis to think about these choices. Here’s how to prepare:
Have honest conversations with your family about your values and preferences
Learn about both options while you can think clearly
Visit a dialysis center to see what the experience really involves
Talk with hospice professionals about comfort care options
Include your preferences in your living will with specific instructions about dialysis
The most important thing is that this decision reflects your values and what you consider a life worth living. Neither choice is right or wrong—they are simply different paths based on what matters most to you.
Dialysis: Artificial Life Support, Not Real Living
What Dialysis Really Is
Let’s be clear about what dialysis actually does: it’s a machine temporarily doing work that your kidneys can no longer do. This isn’t a cure—it’s artificial life support, plain and simple.
Understanding the Machine That Replaces Your Kidneys
Picture this: Your healthy kidneys filter about 50 gallons of blood every single day, working around the clock to keep you alive. Dialysis tries to replicate this incredible work, but here’s the reality:
Your kidneys work 24/7—dialysis works only 12 hours per week
Your kidneys filter blood continuously—dialysis does it in short, intense bursts
Your kidneys balance hundreds of chemicals perfectly—dialysis can only manage a few basic ones
Your kidneys respond instantly to your body’s needs—dialysis follows a preset schedule regardless of how you feel
The bottom line: Dialysis is like having someone mow your lawn once a week when it really needs daily watering, fertilizing, and constant care. It’s not the same thing.
Dialysis Is Life Support You Can Refuse
Here’s what many people don’t realize: dialysis is a form of life support, just like a ventilator or feeding tube. And just like any other life support, you have the absolute legal right to say no.
Think about it this way:
If someone were on a ventilator and chose to have it removed, we would respect that decision
If someone refused a feeding tube, we would honor their choice
Dialysis deserves the same respect—it’s your body and your choice
You are not obligated to accept artificial life support simply because it’s available.
The False Promise of “Buying Time”
The Transplant Myth That Keeps People Suffering
Sarah’s doctor told her that dialysis would be temporary—just a “bridge to transplant” until a kidney became available. That was four years ago. Sarah is still in that dialysis chair three times a week, still waiting, still hoping.
The harsh reality of kidney transplant waiting lists:
Over 90,000 Americans are currently waiting for kidney transplants
Only about 25,000 transplants happen each year
Most patients will die waiting for a kidney that never comes
The average wait time is 3-5 years, and many wait much longer
What “Buying Time” Actually Costs
Let’s talk about what those years of “buying time” actually look like for someone on dialysis:
The Weekly Time Commitment:
12 hours minimum sitting in a dialysis chair each week
An additional 6-8 hours for travel to and from the center
24-48 hours of recovery time after each treatment
Total weekly impact: 42-68 hours of your life
The Physical Reality:
Extreme exhaustion after each treatment—many patients can barely walk to their car
Muscle cramps, nausea, and dizziness during and after treatments
Gradual physical decline despite the treatments
Loss of independence and the ability to travel or be spontaneous
The Emotional Toll:
Constant anxiety about whether “today is the day” you’ll get the call for a transplant
Depression from the endless cycle of treatment and recovery
Relationship strain as your world shrinks to revolve around dialysis schedules
Survivor’s guilt when others on the list die while waiting
Real Stories: The Human Cost of False Hope
Michael started dialysis at 58, believing it would be temporary. “My doctor said I was young and healthy—a perfect candidate for transplant,” he recalls. Seven years later, Michael is still on dialysis. His marriage ended, he lost his job due to the treatment schedule, and his adult children have watched their father slowly disappear into a routine of needles, machines, and crushing fatigue.
“I thought I was choosing life,” Michael says. “But this isn’t living—it’s just not dying.”
The Numbers Don’t Lie
Statistics that dialysis centers don’t highlight:
40% of dialysis patients will never receive a transplant
The 5-year survival rate for dialysis patients is only about 35%
Most patients experience a significant decline in quality of life within the first year
Depression rates among dialysis patients are 2-3 times higher than in the general population
The Reality of Life on Dialysis: Suffering Disguised as Treatment
Trapped in a Chair: The Physical Prison
When doctors discuss dialysis, they focus on the medical mechanics—how the machine filters your blood and removes toxins. They rarely explain the physical reality of being tethered to a machine for hours at a time.
The Time Commitment That Controls Your Life
Imagine this: Every Monday, Wednesday, and Friday, you must sit in the same chair for four hours. You cannot easily get up to use the bathroom, stretch your legs, or take a walk. Your arm is connected to the machine through needles or a port, and moving too much can disrupt the treatment.
Here’s what those hours look like:
12 hours minimum per week sitting immobile in a dialysis center
Additional travel time to and from the center (often 1-2 hours each way)
Waiting time before and after treatment as staff prepare equipment
Total weekly commitment: 20+ hours of your life revolving around a machine
Margaret, who has been on dialysis for three years, explains: “People think four hours isn’t that long, but when you can’t move freely and you’re watching your blood go in and out of your body through tubes, every minute feels like ten.”
The Loss of Freedom and Spontaneity
Before dialysis, you could make plans, travel, or simply decide to spend the afternoon gardening. Dialysis changes everything:
No spontaneous weekend trips—dialysis centers operate on strict schedules
Holiday plans must revolve around treatment availability
Work schedules become nearly impossible to maintain consistently
Social events and family gatherings get missed due to treatment days
“I used to be the person who organized family gatherings,” shares Robert, a 65-year-old grandfather. “Now my family plans around my dialysis schedule. I feel like I’ve become a burden instead of the patriarch.”
The Exhaustion Cycle That Never Ends
The Physical Drain of Each Treatment
Dialysis doesn’t just clean your blood—it puts enormous stress on your cardiovascular system. During treatment, your body experiences:
Rapid fluid removal can drop blood pressure dangerously low
Chemical shifts as electrolytes are quickly rebalanced
Blood pressure fluctuations that leave you dizzy and weak
Physical discomfort from needles, cramping, and nausea
The result? Profound exhaustion that can last for days.
The Recovery-Treatment Cycle
Here’s what a typical week looks like for someone on dialysis:
Monday: Dialysis day – 4 hours of treatment, extreme fatigue afterward Tuesday:Recovery day – still exhausted, maybe able to do light activities Wednesday: Dialysis day – back to the chair, more fatigue Thursday:Another recovery day – slowly regaining some energy Friday: Dialysis day – the cycle repeats Weekend:Trying to catch up on everything you couldn’t do during the week
“I spend more time recovering from dialysis than I do actually living,” explains Jennifer, a 58-year-old teacher who had to go on disability. “By the time I feel somewhat normal, it’s time to go back to that chair.”
Progressive Physical Decline Despite Treatment
The harsh reality is that dialysis doesn’t stop the progression of kidney disease—it only temporarily replaces some kidney function. Over time, patients typically experience:
Muscle weakness and loss from prolonged sitting and fatigue
Bone problems due to mineral imbalances
Heart complications from fluid and pressure changes
Increased risk of infections from access sites and immune system stress
Dr. James Patterson, a nephrologist, admits: “We tell patients that dialysis will help them feel better, but the truth is that most patients feel progressively worse over time, not better.”
What “Staying Alive” Actually Costs
The Loss of Independence
Dialysis doesn’t just take your time—it takes your independence. Many patients find themselves relying on others for:
Transportation to and from dialysis centers (driving after treatment is often unsafe due to fatigue)
Help with daily activities during recovery days
Financial support when work becomes difficult or impossible
Emotional support for depression and anxiety related to treatment
A former business owner, Linda reflects: “I went from running a company and making decisions all day to needing my daughter to drive me places and help me with groceries. Dialysis didn’t just change my medical condition—it changed who I am.”
The Relationship Toll
Dialysis affects every relationship in your life:
Spouses become caregivers instead of partners
Children worry constantly about your health and treatment schedule
Friendships fade as social activities become impossible to maintain
New relationships become difficult to form when your life revolves around medical treatment
The Joy That Gets Lost
Perhaps the most heartbreaking cost is the loss of joy in everyday activities:
Hobbies become too exhausting to maintain
Travel becomes complicated or impossible
Simple pleasures like cooking a meal or tending a garden become overwhelming tasks
The future becomes focused on medical appointments rather than dreams and goals
Michael, who started dialysis at 62, shares: “Before dialysis, I loved taking my boat out on weekends. Now I spend weekends recovering from treatment. The boat sits in my driveway, and every time I look at it, I remember who I used to be.”
This Is Not Living—This Is Existing
The distinction between being alive and truly living becomes crystal clear for many dialysis patients. They’re technically alive—their hearts beat, they breathe, they’re conscious. But the quality of that life, the joy, purpose and connection that make life meaningful, often disappear under the weight of treatment schedules and physical exhaustion.
The Medical System’s Reluctance to Tell the Truth
Why Doctors Don’t Discuss Your Right to Refuse
Medical Culture Focused on “Doing Everything”
The medical profession has been built on a fundamental principle: save lives at all costs. This noble goal, however, has created a culture where stopping treatment feels like failure, even when continuing treatment causes more suffering than healing.
Medical students spend years learning how to diagnose, treat, and cure diseases. They’re taught to fight death, not to help patients prepare for it. This training creates doctors who are genuinely uncomfortable discussing treatment refusal because it goes against everything they’ve been taught to value.
Dr. Maria Rodriguez, a nephrologist with 20 years of experience, explains: “We’re trained to see death as the enemy. When a patient asks about stopping dialysis, it feels like we’re abandoning them, even when continuing treatment is causing more harm than good.”
Financial Incentives in the Dialysis Industry
The dialysis industry is a $90 billion business in the United States. This creates powerful financial incentives that can influence treatment recommendations:
Hospital-Level Incentives:
Dialysis centers generate significant revenue for hospital systems
Insurance reimbursements for dialysis are substantial and reliable
Keeping patients on dialysis means ongoing, predictable income streams
Provider-Level Pressures:
Nephrologists build their practices around managing dialysis patients
Productivity measures often focus on patient numbers rather than patient outcomes
Medical centers track revenue generated by different specialists and departments
James, whose father was on dialysis for six years, reflects: “Looking back, I wonder if the doctors kept pushing dialysis because it was good for business, not because it was good for my dad.”
Fear of Liability for Honest Conversations
Many healthcare providers worry that discussing treatment refusal could expose them to legal risk. This fear, while often unfounded, prevents honest conversations about patient options:
Malpractice concerns about being accused of not doing enough
Worry about family members who might blame doctors for a patient’s death
Hospital policies that discourage discussions about stopping life support
Professional peer pressure to always recommend aggressive treatment
The result: Patients receive incomplete information about their choices because doctors are afraid to have difficult but necessary conversations.
The Hospice Alternative They Won’t Mention
Comfort Care as a Valid Choice
Hospice and palliative care represent a completely different approach to end-stage kidney disease—one that most doctors won’t bring up unless you specifically ask.
What hospice care actually provides:
Expert pain and symptom management to keep you comfortable
Emotional and spiritual support for you and your family
Care coordination to ensure all your needs are met
Dignity and autonomy in your own home or chosen setting
Quality of Life Over Quantity of Time
The hospice philosophy is simple: making whatever time you have left as meaningful and comfortable as possible. For kidney patients, this means:
Physical Comfort:
No more needles, machines, or treatment centers
Natural management of symptoms as your body begins to shut down
Medications focused on comfort rather than prolonging life
Emotional Peace:
Time to connect with family and friends without medical interruptions
Freedom to focus on relationships and personal closure
Control over your environment and daily routine
Margaret, who chose hospice over dialysis at age 73, shares: “I had three beautiful months with my family. We talked, we laughed, we said everything we needed to say. I couldn’t have done that if I’d been exhausted from dialysis three times a week.”
You Can Say No to Artificial Life Support
The legal reality is clear: You have the absolute right to refuse any medical treatment, including dialysis. This isn’t suicide or giving up—it’s making an informed choice about how you want to spend your remaining time.
Understanding your rights:
No medical treatment can be forced upon you
You can stop dialysis at any time, even if you’ve already started
Choosing comfort care is legally protected and ethically supported
Family members cannot override your treatment decisions if you’ve made them clear
Why Doctors Don’t Mention This Option
The unfortunate truth is that many healthcare providers won’t bring up hospice unless patients or families specifically ask about it:
Lack of training in end-of-life conversations and hospice care
Cultural bias toward aggressive treatment in medical education
Time constraints in clinical appointments discourage lengthy discussions
Personal discomfort with discussing death and dying
As a hospice medical director, Dr. Patricia Williams explains, “I see patients every week who say, ‘I wish someone had told me about this option sooner.’ The medical system is set up to offer more treatment, not different approaches to care.”
What Natural Death from Kidney Failure Looks Like
Many people fear that dying from kidney failure will be painful, but this is rarely true:
Gradual decrease in consciousness as toxins build up naturally
Peaceful sleepiness that progresses over days to weeks
Minimal physical discomfort when properly managed with hospice care
Surrounded by family in familiar, comfortable surroundings
Taking Action to Get Honest Information
If you want complete information about your choices:
Ask directly:“Doctor, what would happen if I chose not to do dialysis?”
Request hospice consultation: Ask to speak with hospice professionals about comfort care.
Get a second opinion: Seek perspectives from doctors who aren’t invested in your current treatment.
Contact hospice organizations directly: They can provide information even if your doctor hasn’t referred you.
Work with an end-of-life doula: Get unbiased support to explore your options.
Remember: Asking about alternatives to dialysis doesn’t mean you’re giving up—it means you’re taking control of your healthcare decisions and ensuring you have all the information you need to make choices that align with your values.
Making the Choice: Quality of Life vs. Artificial Existence
Understanding Your Right to Choose
Legal Right to Refuse Any Medical Treatment, Including Dialysis
You have the fundamental legal right to refuse any medical treatment, including dialysis. Federal law, medical ethics, and decades of court decisions across the United States protect this right. No one can force you to start or continue dialysis against your will.
What this means for you:
You cannot be compelled to begin dialysis treatments
You can stop dialysis at any time, even if you’ve already started
Family members cannot override your clearly expressed wishes
Healthcare providers must respect your decision, even if they disagree
This isn’t about giving up—it’s about taking control of your healthcare decisions and choosing a path that aligns with your personal values and definition of a meaningful life.
Choosing Natural Death with Dignity and Comfort
When you choose to refuse dialysis, you’re selecting natural death with dignity—allowing your body to complete its natural process without artificial intervention. This choice is supported by hospice and palliative care professionals specializing in comfort-focused care.
What natural death from kidney failure looks like:
A gradual, peaceful process that typically occurs over days to weeks
Minimal physical pain when properly managed with hospice care
Increasing sleepiness as your body naturally shuts down
Comfort measures focused on symptom relief and emotional support
Eleanor, whose mother chose comfort care over dialysis, shares: “Mom died peacefully at home, surrounded by family. She was comfortable, and we had beautiful conversations right up until the end. It was nothing like the frightening process we had imagined.”
What Quality of Life Really Means
Time with Family Without Machines
Quality of life means reclaiming your time for what matters most to you. Instead of spending countless hours connected to medical equipment, you can focus on relationships and meaningful experiences.
Consider the difference:
Dialysis schedule: Three days per week, four hours each time, plus travel and recovery
Comfort care choice: Those same hours spent with grandchildren, sharing stories, or simply enjoying quiet moments together
Real moments become possible:
Spontaneous family gatherings without worrying about treatment schedules
Holiday celebrations where you have energy to participate fully
Quiet conversations with loved ones without medical interruptions
Creating memories that focus on connection rather than medical management
Robert, a 72-year-old grandfather who chose comfort care, spent his final months teaching his grandson woodworking. “Every project we completed together was pure joy,” his daughter recalls. “Dad was fully present—not exhausted from dialysis treatments.”
Freedom from Medical Appointments and Treatments
Choosing comfort care means freedom from the medical treadmill that dialysis creates. No more:
Three-times-weekly dialysis sessions that drain your energy
Frequent lab work and doctor appointments
Managing infections and complications from dialysis access sites
Transportation challenges to and from medical facilities
Side effects from medications and treatments
Instead, you can focus your energy on living:
Pursuing hobbies and interests you’ve set aside
Traveling to see family or favorite places
Gardening, reading, or creating without exhaustion
Simply enjoying your own home and routine
Choosing How You Want to Spend Your Remaining Time
The most powerful aspect of choosing comfort care is regaining control over how you spend your days. This means making decisions based on your values and priorities, not medical schedules.
Examples of meaningful choices:
Susan, a retired teacher, used her final months to write personalized letters for each grandchild’s future milestones. She completed letters for graduations, weddings, and first birthdays—a legacy that wouldn’t have been possible with the fatigue of ongoing dialysis.
An avid fisherman, Michael spent his last summer at his favorite lake with friends and family. “Every sunrise on the water was a gift,” his son remembers. “Dad was at peace and truly himself again.”
Questions to guide your decision:
What activities bring me the most joy and meaning?
How do I want to be remembered by my family?
What relationships matter most to me right now?
What would I regret not doing or saying?
Taking action to honor your values:
Reflect honestly on what makes life meaningful for you
Have open conversations with your healthcare team about all your options
Discuss your wishes with family members while you can think clearly
Document your preferences in your living will with specific language about dialysis
Consider a hospice consultation to understand comfort care options fully
Remember: Choosing quality of life over quantity of time is a valid, courageous decision that deserves respect and support. This choice allows you to live your final chapter on your own terms, surrounded by love and free from the burden of artificial life support.
Planning Ahead: Including Dialysis Decisions in Your Living Will
Why This Decision Cannot Wait
Making Choices While You Can Think Clearly
The best time to make decisions about dialysis is when you’re healthy and thinking clearly—not when you’re facing a medical crisis. When your kidney function is declining, emotions run high, and the pressure to “do something” can cloud your judgment.
Right now, while you’re calm and clear-headed, you can:
Research your options thoroughly without time pressure
Consider how different choices align with your values
Have meaningful conversations with family and healthcare providers
Think through scenarios without the fear and urgency of immediate medical decisions
The reality of medical emergencies:
Decisions made in crisis are often based on fear rather than values
Family members may panic and choose aggressive treatment by default
Healthcare providers default to “doing everything” when patients’ wishes are unclear
Time pressure prevents thorough consideration of quality-of-life factors
Janet, whose mother ended up on dialysis during a kidney crisis, reflects: “We were all so scared when Mom got sick. The doctors said she needed dialysis to survive, and we just said yes. Later, watching her suffer through treatments, we realized we never asked about alternatives. We made the decision out of fear, not wisdom.”
Protecting Your Family from Impossible Decisions
When you don’t plan ahead, you force your family to make heartbreaking decisions at the worst possible time. Without clear guidance from you, they face impossible choices:
Should we start dialysis even though Dad always said he never wanted to be kept alive by machines?
How long should we continue treatment if Mom isn’t getting better?
What would she want us to do in this situation?
Are we being selfish by wanting to keep her alive, or by letting her go?
The emotional toll on families:
Guilt and second-guessing every decision they make for you
Family conflicts occur when different members disagree about your care
Regret and “what-if” thoughts that can last for years
Financial stress from treatments that may not align with your values
The Peace That Comes from Clear Planning
When you document your wishes clearly, you give your family the gift of certainty. They don’t have to guess what you would want—they know. This knowledge:
Reduces family stress during an already difficult time
Prevents conflicts between family members with different opinions
Allows loved ones to focus on supporting you rather than making decisions
Provides comfort knowing they’re honoring your wishes
Specific Dialysis Directives to Include
Clear Yes or No on Dialysis as Life Support
Your living will should include specific language about dialysis because it’s a form of life support that many people don’t consider when they think about end-of-life preferences.
Example language for refusing dialysis: “I do not want dialysis or other artificial kidney treatments. If my kidneys fail, I want comfort care and hospice support instead of life-prolonging treatments.”
Example language for accepting dialysis with conditions: “I am willing to try dialysis if there is a reasonable chance of recovery or if it will significantly improve my quality of life. However, if dialysis causes more suffering than benefit, I want the option to stop treatment.”
Why specific language matters:
Generic statements about “no extraordinary measures” may not clearly cover dialysis
Healthcare providers need explicit guidance about your dialysis preferences
Family members need clear direction to advocate for your wishes
Many people are willing to try dialysis but don’t want to continue indefinitely if their quality of life doesn’t improve. Your living will can include time-based or condition-based limits.
Examples of time-limited directives:
“If I start dialysis, I want to try it for no more than three months. If my quality of life hasn’t improved significantly by then, I want to stop treatment and transition to hospice care.”
“I’m willing to try dialysis while waiting for a kidney transplant, but if I don’t receive a transplant within one year, I want to stop dialysis and focus on comfort care.”
Examples of condition-based directives:
“If dialysis leaves me unable to live independently or causes severe fatigue that prevents me from enjoying time with family, I want to stop treatment.”
“I want to continue dialysis only as long as I can maintain my mental clarity and ability to communicate with loved ones.”
Your Values About Quality vs. Quantity of Life
The most important part of your living will is explaining your personal values about what makes life worth living. This helps your family and healthcare team understand the “why” behind your decisions.
Questions to consider and address:
What does quality of life mean to you personally?
How important is maintaining independence?
What activities or abilities are essential to your sense of self?
What would make continued living feel like suffering to you?
Example value statements: “Quality of life is more important to me than length of life. I value my independence, my ability to think clearly, and my capacity to enjoy relationships with family and friends. If medical treatments prevent me from having these things, I prefer comfort care.”
“I want to live as long as possible, but not if it means being hooked to machines for hours every week. I’d rather have a shorter life with dignity than a longer life dependent on artificial support.”
“My faith teaches me that there is a time for everything, including a time to die. I don’t want my life artificially prolonged when my body is ready to let go.”
Additional Important Directives
Consider including these specific instructions:
Healthcare proxy guidance:
“I want my healthcare proxy to have the authority to stop dialysis if they believe it’s not providing benefit or is causing suffering.”
Trial period specifications:
“If I agree to a trial of dialysis, I want regular family meetings every two weeks to assess whether the treatment is meeting my goals.”
Hospice transition:
“If dialysis is stopped or refused, I want immediate referral to hospice care for comfort and symptom management.”
Taking Action: Creating Your Dialysis Directives
Steps to ensure your wishes are clearly documented:
Draft specific language about dialysis using the examples above as starting points
Discuss your draft with family members to ensure they understand your reasoning
Review your directives with your primary care doctor to ensure medical clarity
Work with an end-of-life doula who can help you think through scenarios and express your wishes clearly
Have your living will properly witnessed and notarized according to your state’s requirements
Provide copies to your healthcare proxy, family members, and primary care physician
Review and update your directives annually or when your health status changes
Remember: Planning ahead isn’t morbid—it’s one of the most loving things you can do for your family. When you take control of these decisions now, you spare your loved ones from having to make impossible choices during their grief and fear.
Getting Help with Difficult Decisions and Living Wills
The Role of End-of-Life Doulas in CKD Navigation
Non-Medical Support for Understanding Your Options
Facing chronic kidney disease and potential dialysis decisions can feel overwhelming and isolating. End-of-life doulas provide compassionate, non-medical support that helps you navigate these difficult choices without the pressure or bias that sometimes comes from medical professionals.
Unlike doctors who may focus primarily on medical outcomes, end-of-life doulas help you understand:
All your treatment options are presented in clear, simple language
The real-life impact of different choices on your daily routine and relationships
Your legal rights to accept or refuse treatments, including dialysis
Alternative approaches, like hospice and comfort care, where medical teams may not discuss
Sarah, who worked with an end-of-life doula when facing Stage 4 CKD, explains: “My doula helped me understand that I had real choices. She didn’t try to talk me into or out of anything—she just made sure I understood what each path would actually mean for my life.”
Illness Navigation Before Reaching Crisis Point
The greatest gift of working with an end-of-life doula is getting guidance before you’re in a medical emergency. When you’re healthy enough to think clearly, you can make decisions based on your values rather than fear.
Early illness navigation includes:
Understanding the stages of CKD and what to expect as the disease progresses
Learning about dialysis realities from people who aren’t financially invested in your treatment decision
Exploring hospice and palliative care options before you need them
Planning conversations with family members while emotions aren’t running high
The difference this makes:
Informed decision-making rather than crisis-driven choices
Reduced family stress when difficult decisions need to be made
Better communication with healthcare providers about your preferences
Peace of mind knowing you’ve considered all options thoroughly
Emotional Support for Difficult Conversations
Talking about end-of-life preferences is emotionally challenging, even with the people closest to you. End-of-life doulas provide the emotional support you need to have these crucial conversations.
They help you:
Process your own feelings about mortality and treatment choices
Find the right words to express your values and preferences to your family
Navigate family disagreements about your care decisions with compassion
Cope with anxiety and fear about the future
Michael, whose family initially opposed his decision to refuse dialysis, shares: “My doula helped me find ways to explain my choice that my children could understand. She was there during the hard conversations, helping everyone feel heard and respected.”
Living Will Preparation with Properly Trained End-of-Life Doulas
End-of-Life Doulas as the Cost-Effective, Compassionate Alternative to Attorneys
Most people assume they need an expensive attorney to create a proper living will, but this isn’t true for uncomplicated situations. Properly trained end-of-life doulas offer professional guidance at a fraction of the cost of legal services.
Cost comparison:
Attorney fees: Often $300-$800 or more for living will preparation
End-of-life doula services: Typically $100-$300 for comprehensive living will support
Added value: Doulas provide ongoing emotional support and family communication assistance
The savings are significant, but the real value lies in the compassionate, unbiased approach that focuses on your personal values rather than legal technicalities.
Professional, Unbiased Guidance Tailored to Uncomplicated Living Wills
Properly trained end-of-life doulas understand the legal requirements for valid living wills while focusing on the human elements that attorneys often miss.
What makes doula guidance different:
No medical bias toward aggressive treatment or specific outcomes
Focus on your values and preferences rather than standard legal language
Personal attention to ensure your document reflects your actual wishes
Understanding of healthcare realities that purely legal professionals may lack
For uncomplicated living wills, doulas can help you create documents that are:
Legally valid in your state
Medically clear to healthcare providers
Personally meaningful to you and your family
Specific enough to guide difficult decisions
Assistance with Clear Communication to Family Members to Prevent Conflicts
Family conflicts about end-of-life care often arise from misunderstandings about what their loved one actually wanted. End-of-life doulas help prevent these painful disagreements.
How doulas facilitate family communication:
Guiding family meetings to discuss your living will preferences
Helping you explain your reasoning in ways family members can understand
Addressing concerns and questions from different family members
Documenting family discussions to prevent future confusion
Linda, who worked with a doula to prepare her living will, reflects: “My doula helped me have conversations with my adult children that I never thought I could have. When I explained my dialysis preferences with her support, my kids understood my reasoning and felt more at peace with my choices.”
Support Throughout the Documentation Process Ensuring Wishes Are Clearly Expressed and Honored
Creating a living will isn’t just about signing a document—it’s about ensuring your wishes will be understood and respected when the time comes to use them.
Comprehensive documentation support includes:
Drafting specific language:
Clear directives about dialysis as life support
Detailed instructions about comfort care preferences
Values statements that explain your reasoning
Time limits and conditions for any treatments you might accept
Review and refinement:
Multiple drafts to ensure accuracy and completeness
Feedback sessions to clarify any unclear language
Family review opportunities to address questions or concerns
Final document preparation meeting all legal requirements
Implementation planning:
Copies distributed to family members and healthcare providers
Healthcare proxy selection and training on your preferences
Regular review schedules to update documents as needed
Crisis communication plans for when decisions need to be made
Taking Action: Finding the Right End-of-Life Doula Support
Steps to connect with qualified end-of-life doula services:
Research doulas in your area who specialize in advance care planning and CKD support
Ask about their training in living will preparation and healthcare navigation
Schedule a consultation to discuss your specific needs and concerns
Verify their experience with kidney disease and dialysis decisions
Begin the process early while you’re still healthy and thinking clearly
Remember: Working with a properly trained end-of-life doula gives you professional, compassionate support for one of the most important documents you’ll ever create. This investment in your future care and your family’s peace of mind is affordable and invaluable.
Call to Action: Take Control Before It’s Too Late
Start Having Honest Conversations Now
Discuss CKD Risk factors and Prevention with Your Doctor
The time to start talking about chronic kidney disease is before you need dialysis—ideally when you’re still healthy or in early stages of CKD. Don’t wait for a crisis to begin these crucial conversations.
Key questions to ask your doctor:
What is my current kidney function, and how is it changing over time?
What can I do now to slow the progression of kidney disease?
What are the early warning signs that my kidneys are getting worse?
If my kidneys fail, what are ALL my options—not just dialysis?
Taking charge of these conversations puts you in the driver’s seat of your healthcare decisions rather than being a passive recipient of whatever treatment is offered.
Ask Directly About Hospice as an Alternative to Dialysis
Most doctors won’t bring up hospice unless you specifically ask, so it’s up to you to demand complete information about your choices.
Direct questions that get honest answers:
“Doctor, what would happen if I chose NOT to do dialysis?”
“Can you refer me to hospice professionals so I can learn about comfort care options?”
“What would natural death from kidney failure actually look like?”
“How can hospice help me if I choose not to pursue dialysis?”
Jennifer, who asked these questions during a routine appointment, shares: “My doctor seemed surprised that I asked about hospice, but once I did, she gave me honest information that completely changed how I thought about my options.”
Talk with Family About Your True Values and Wishes
These conversations are difficult but essential—and they get harder the longer you wait. Start talking while emotions aren’t running high and you can think clearly.
Conversation starters that work:
“I’ve been thinking about what quality of life means to me…”
“If my kidneys fail, here’s what matters most to me…”
“I want you to understand my values so you can support my decisions…”
“Let’s talk about what I would and wouldn’t want if I couldn’t speak for myself…”
Making these conversations easier:
Choose a calm, private setting without distractions
Focus on your values rather than specific medical scenarios
Listen to your family’s concerns and answer their questions honestly
Consider involving an end-of-life doula to facilitate difficult discussions
Create Your Living Will Today
Include Specific Dialysis Refusal if That’s Your Choice
Generic living wills often don’t address dialysis specifically, leaving your family and doctors to guess what you would want. Clear, specific language prevents confusion and ensures your wishes are respected.
Example language for dialysis refusal: “I do not want dialysis or other forms of artificial kidney support. If my kidneys fail, I want comfort care and hospice services instead of life-prolonging treatments.”
Example language for conditional acceptance: “I am willing to try dialysis for no more than three months, but if my quality of life does not significantly improve, I want to stop treatment and transition to hospice care.”
Work with Qualified End-of-Life Doulas for Guidance
Creating a living will isn’t just about filling out forms—it’s about ensuring your deepest values are clearly expressed and legally protected. Qualified end-of-life doulas provide the expertise and emotional support you need.
What doulas offer that you can’t get elsewhere:
Professional guidance without medical or legal bias
Emotional support during difficult decision-making
Help translating your values into clear, specific language
Family communication facilitation to prevent future conflicts
Cost-effective alternative to expensive attorney fees
Robert, who worked with an end-of-life doula, explains: “My doula helped me think through scenarios I never would have considered on my own. She made sure my living will actually reflected what I wanted, not just standard legal language.”
Make Your Wishes Legally Binding While You Can
The best living will in the world is useless if it’s not legally valid in your state or accessible when needed.
Essential steps for legal protection:
Ensure your document meets your state’s specific requirements
Have it properly witnessed and notarized according to local laws
Provide copies to your healthcare proxy, family members, and primary doctor
Store the original in an accessible location
Review and update annually or when your health status changes
Demand Better Healthcare Conversations
Push Doctors to Discuss ALL Options, Including Saying No
You have the right to complete information about your healthcare choices, including the option to refuse treatment. If your doctor isn’t providing this, it’s time to be more direct.
How to advocate for complete information:
“I want to understand all my options, including what happens if I don’t do dialysis.”
“Can you explain the quality-of-life impacts of each treatment choice?”
“I’d like to speak with hospice professionals* to understand comfort care options.”
“Please don’t assume I want every possible treatment—help me understand my choices.”
If your doctor is reluctant to discuss alternatives:
Seek a second opinion from a different nephrologist
Ask for a palliative care consultation directly
Contact hospice organizations for information, even without a referral
Consider switching to a healthcare provider who respects patient autonomy
Advocate for Honest Information About Dialysis Reality
The dialysis industry has a financial interest in presenting treatment in the most positive light possible. You deserve honest information about what dialysis actually involves.
Demand specific details about:
Time commitments and impact on daily life
Realistic survival statistics and quality-of-life outcomes
Physical side effects and complications that commonly occur
Financial costs and insurance limitations
Impact on relationships and independence
Sarah, who pushed for honest information, reflects: “When I insisted on details about what dialysis would really be like, my doctor finally admitted that most of his long-term patients struggle significantly with fatigue and depression. That information changed my decision completely.”
Support Patients’ Rights to Choose Comfort Over Artificial Life Support
Every person deserves the right to make healthcare decisions based on their own values and definition of quality of life. By advocating for yourself, you help create change for future patients.
Ways to support patient choice:
Share your story with others facing similar decisions
Educate family and friends about the realities of dialysis
Support organizations that advocate for patient rights and hospice care
Encourage healthcare providers to have honest conversations about all options
Taking Immediate Action: Your Next Steps
Don’t wait another day to take control of your healthcare future:
Schedule an appointment with your doctor specifically to discuss your CKD progression and all treatment options
Research qualified end-of-life doulas in your area who can provide guidance and support
Begin conversations with family members about your values and treatment preferences
Draft or update your living will with specific language about dialysis and comfort care
Advocate for complete information from all your healthcare providers
Connect with others who have faced similar decisions to learn from their experiences
The choice is yours, but only if you act now.Every day you wait is a day closer to potentially being forced into decisions during a medical crisis when clear thinking becomes impossible.
Remember: Choosing quality of life over quantity of time isn’t giving up—it’s taking control. You have the power to shape your final chapter with dignity, comfort, and surrounded by the people you love. Don’t let that power slip away by failing to plan ahead.
Your life. Your choice. Your time to act is now.
Conclusion: Your Life, Your Choice
Empowerment Through Honest Education
Knowledge is the foundation of every good healthcare decision, and this is especially true when facing end-stage kidney disease and dialysis choices. For too long, patients have been kept in the dark about the full reality of what dialysis involves and what alternatives exist.
When you understand the complete picture—the time commitment, physical exhaustion, emotional toll, and uncertain outcomes of dialysis—you reclaim the power to make decisions that truly reflect your values.
Education means understanding:
Dialysis is artificial life support, not a cure, and you have the right to refuse it
Most people waiting for kidney transplants will never receive one
Hospice and comfort care offer dignified alternatives focused on quality of life
You have legal rights to make healthcare decisions based on your personal values
Maria, who learned about all her options before her kidneys failed, reflects: “Once I understood that dialysis wasn’t mandatory—that it was a choice—everything changed. I could finally make a decision based on what I wanted for my life, not what I was afraid of.”
The Courage to Choose Quality Over Quantity
It takes tremendous courage to prioritize quality of life over simply staying alive at any cost. Our society often equates refusing medical treatment with “giving up,” but choosing comfort and dignity requires incredible strength.
The Courage to Say No
Saying no to dialysis means:
Standing up to medical pressure and family expectations that you should “fight” with every available treatment
Trusting your own judgment about what makes life worth living
Accepting mortality while focusing on making your remaining time meaningful
Choosing peace over prolonged struggle
The Courage to Choose Differently
Robert, who stopped dialysis after two difficult years, shares: “People told me I was giving up, but it was actually the most courageous thing I ever did. I chose to spend my last months with my family instead of in a dialysis chair. Those months were the most precious of my life.”
This courage includes:
Honest conversations with family about your values and wishes
Clear documentation of your preferences in your living will
Advocating for yourself when healthcare providers push for aggressive treatment
Supporting others who face similar difficult choices
Hope Through Informed Decisions and Compassionate End-of-Life Planning
True hope isn’t found in false promises or unrealistic expectations—it’s found in making decisions that honor your deepest values while surrounded by compassionate support.
Hope in Planning Ahead
When you plan for end-of-life decisions while you’re healthy:
Your family knows exactly what you want and can focus on supporting you rather than guessing
Healthcare providers must respect your clearly documented wishes
You maintain control over your final chapter, even when you can no longer speak for yourself
Conflicts and confusion are minimized during already difficult times
Hope in Compassionate Care
Choosing comfort care and hospice doesn’t mean giving up hope—it means hoping for something different:
Hope for peaceful, pain-free final days
Hope for meaningful time with the people you love most
Hope for dignity and respect during your final journey
Hope that your death will reflect the values that guided your life
Hope in Professional Support
Working with properly trained end-of-life doulas provides hope through:
Expert guidance through difficult healthcare decisions
Emotional support for you and your family during challenging conversations
Cost-effective living will preparation that ensures your wishes are legally protected
Ongoing advocacy to ensure your healthcare choices are respected
Susan, who worked with an end-of-life doula throughout her CKD journey, explains: “Having someone who understood both the medical realities and the emotional challenges gave me hope that I could handle whatever came next. I wasn’t facing these decisions alone.”
Hope for Others
Your choices and advocacy create hope for future patients by:
Challenging the assumption that dialysis is always the right choice
Encouraging honest conversations between healthcare providers and patients
Supporting the rights of all patients to choose comfort over aggressive treatment
Normalizing discussions about quality of life and end-of-life planning
Your Legacy of Choice
The decisions you make about your end-of-life care become part of your legacy—a final expression of the values that guided your entire life.
Whether you choose:
Dialysis with clear time limits and quality-of-life conditions
Comfort care from the beginning, focused on dignity and peace
A trial period of dialysis with the freedom to stop if it’s not working
The key is that these choices are yours, made with complete information and supported by people who respect your autonomy.
Your life has been yours to live—your death should be yours to choose.Through honest education, courageous decision-making, and compassionate planning, you can ensure that your final chapter reflects the same values and dignity that have defined your entire journey.
The power is in your hands. The time to use it is now.
Right now, there’s no governing body that oversees end-of-life doulas (EOLD). Keep in mind that some EOLDs listed in directories may no longer be practicing. The author suggests starting with The International Doula Life Movement (IDLM), known for its regularly updated and thorough training. From there, consider INELDA and NEDA.
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