Hospice for Kidney Disease - Care and Comfort After Stopping Dialysis

Article reviewed by Dr. Michael Ramirez, MD, FASN, Board-Certified Nephrologist and Hospice Medical Director with 22+ years experience in kidney disease and end-of-life care.

For many people living with kidney failure, dialysis treatments become a constant rhythm of life—three times a week, four hours at a time, year after year. Dialysis keeps you alive by doing the work your kidneys can no longer do. But for some, there comes a point when dialysis itself becomes more burden than benefit. When treatment stops providing acceptable quality of life, when other medical conditions make dialysis increasingly difficult, or when someone simply feels ready to stop, hospice care offers a compassionate alternative focused on comfort and dignity.

The decision to discontinue dialysis and transition to hospice is profoundly personal and often heart-wrenching. This article provides honest, compassionate information about what hospice offers kidney disease patients, what happens when dialysis stops, and how families in Tulsa, Muskogee, and throughout Oklahoma can access supportive end-of-life care.

Quick Answer: What Is Hospice for Kidney Disease?

Hospice care for kidney disease patients provides comfort-focused medical care, symptom management, and family support when someone chooses to discontinue dialysis or when end-stage renal disease progresses despite treatment. Hospice becomes appropriate when life expectancy is six months or less, typically occurring 7-14 days after stopping dialysis. Medicare Part A and Oklahoma’s SoonerCare program fully cover hospice services including medications, equipment, nursing care, and family support with no out-of-pocket costs. Oklahoma Home Hospice coordinates with nephrologists at DaVita, Fresenius, and hospital-based dialysis centers in Tulsa and Muskogee to ensure smooth transitions and compassionate care.

Understanding End-Stage Kidney Disease and Treatment Options

Your kidneys perform essential functions: filtering waste from blood, balancing fluids and electrolytes, controlling blood pressure, and producing hormones that regulate red blood cell production and bone health. When kidneys fail completely—reaching end-stage renal disease (ESRD)—these functions stop, and waste products build up to dangerous levels in the blood.

How Dialysis Works and Its Impact on Quality of Life

Dialysis artificially filters blood to remove waste products and excess fluid. The two main types are:

Hemodialysis - Blood is pumped out of the body through a surgically created access point (usually an arteriovenous fistula in the arm), filtered through a dialysis machine, and returned to the body. Treatment typically requires:

• Three sessions per week, each lasting 3-4 hours
• Travel to a dialysis center like DaVita Tulsa East or Fresenius Kidney Care in Muskogee
• Strict fluid restrictions between treatments
• Dietary limitations (low potassium, low phosphorus, limited protein)

Peritoneal Dialysis - A catheter is placed in the abdomen, and dialysis fluid is cycled through the peritoneal cavity to filter waste. This can be done at home but requires:

• Daily exchanges, often 4-5 times per day or overnight using a machine
• Strict sterile technique to prevent infection
• Storage space for supplies
• Physical ability to perform exchanges

While dialysis extends life, it comes with significant burdens. According to the Oklahoma Health Care Authority, many ESRD patients experience:

• Fatigue and weakness after treatments
• Nausea and difficulty eating
• Muscle cramps and restless legs
• Low blood pressure causing dizziness and falls
• Depression and diminished quality of life
• Loss of independence and mobility
• Frequent hospitalizations for complications

When Patients Consider Stopping Dialysis

The decision to discontinue dialysis doesn’t happen suddenly—it usually evolves over time as quality of life deteriorates. Common situations that lead people to consider stopping dialysis include:

• Advanced age combined with multiple medical problems - When someone in their 80s or 90s has heart failure, dementia, and severe frailty in addition to kidney failure, dialysis may prolong suffering rather than providing meaningful life extension.

• Progressive functional decline - When someone can no longer live independently, needs total assistance with daily activities, or spends most of their time in bed or a chair.

• Severe dementia - When cognitive impairment makes it impossible to understand why dialysis is necessary, leading to distress during treatments.

• Intolerable side effects - When dialysis consistently causes severe symptoms like nausea, cramping, dangerously low blood pressure, or other complications that make treatments unbearable.

• Personal readiness - When someone has lived with kidney disease for many years and feels they’ve fought long enough and are ready to focus on quality rather than quantity of remaining time.

Dr. Jennifer Walsh, a nephrologist at Oklahoma Nephrology Associates in Oklahoma City, shares: “Many patients tell me they feel like their whole life revolves around dialysis. When the burden outweighs the benefit and quality of life has diminished to a point they find unacceptable, choosing to stop is a legitimate, autonomous decision. Hospice ensures they remain comfortable and supported.”

Hospice Eligibility for Kidney Disease in Oklahoma

Medicare, Medicaid through SoonerCare, and most private insurance plans cover hospice for kidney disease patients who meet specific criteria.

Criteria for End-Stage Renal Disease

To qualify for hospice with an ESRD diagnosis, patients typically must meet the following:

Primary Criteria:

• Chronic kidney disease with glomerular filtration rate (GFR) less than 15 mL/min
• Not receiving dialysis, or have decided to discontinue dialysis
• Life expectancy of six months or less as certified by a physician

Supporting Clinical Indicators:

• Creatinine clearance less than 10 mL/min
• Serum creatinine greater than 8.0 mg/dL
• Uremia symptoms (confusion, nausea, itching, fatigue)
• Significant comorbid conditions such as:
  • Advanced heart failure (ejection fraction under 20%)
  • Chronic obstructive pulmonary disease requiring continuous oxygen
  • Liver disease with cirrhosis
  • Cancer
  • Advanced dementia

Functional Status:

• Karnofsky Performance Status of 40% or less (requiring significant assistance with daily activities)
• Inability to maintain nutrition and hydration adequately
• Unintentional weight loss

What Happens When Dialysis Is Discontinued

Understanding the timeline after stopping dialysis helps families prepare and make informed decisions.

When dialysis stops, waste products and fluid begin accumulating in the body. The timeline varies depending on:

• Residual kidney function (some people have minimal urine output, others have none)
• Fluid intake and dietary choices
• Overall health and comorbid conditions
• Individual physiology

Typical Timeline Without Dialysis:

Days 1-3: Most people feel relief after stopping the burden of dialysis treatments. Appetite may improve temporarily. Energy levels may initially increase as the exhaustion from dialysis lifts.

Days 4-7: Waste products (blood urea nitrogen and creatinine) begin rising. Subtle symptoms may appear: mild fatigue, decreased appetite, slight nausea. Many people still feel relatively comfortable during this window.

Days 7-14: Uremia (waste product buildup) becomes more pronounced. Symptoms typically include increased sleepiness, decreased appetite, confusion or mental fog, and gradual withdrawal from surroundings. With good symptom management, patients remain comfortable and pain-free.

Days 14+: Most patients slip into a peaceful unconsciousness and pass away within 2-3 weeks of stopping dialysis. Some live slightly longer, especially if they have residual kidney function and continue producing urine.

According to research published by the Renal Physicians Association, median survival after stopping dialysis ranges from 8-12 days, though individual experiences vary.

Medical Indicators: Creatinine Levels, Symptoms, and Comorbidities

Physicians consider multiple factors when certifying hospice eligibility for kidney disease:

Laboratory Values:

• Serum creatinine typically above 8.0 mg/dL without dialysis
• Blood urea nitrogen (BUN) often above 100 mg/dL
• Severe electrolyte imbalances (potassium, calcium, phosphorus)

Uremia Symptoms:

• Confusion or altered mental status (uremic encephalopathy)
• Nausea, vomiting, loss of appetite
• Severe itching (uremic pruritus)
• Muscle twitching or seizures (in severe cases)
• Metallic taste and bad breath (uremic fetor)
• Difficulty breathing from fluid overload

Comorbid Conditions: Patients with kidney disease plus other serious illnesses are particularly appropriate for hospice. Oklahoma nephrologists consider combinations like:

• Kidney failure + heart failure
• Kidney failure + advanced cancer
• Kidney failure + severe dementia
• Kidney failure + cirrhosis
• Kidney failure + chronic lung disease

Making the Decision to Stop Dialysis

Choosing to discontinue life-sustaining treatment is one of the most difficult decisions a person can make. There’s no “right” answer that fits everyone—the decision must reflect the individual patient’s values, goals, and quality of life priorities.

Quality of Life Considerations

Many families wonder: What makes life worth living? When does treatment become more burden than benefit? These deeply personal questions guide the decision about dialysis.

Questions to consider together:

• Can you do the things that give your life meaning and joy? If dialysis has taken away your ability to garden, play with grandchildren, attend church, or engage in hobbies you love, quality of life has diminished.

• How do you feel most days? If you spend most days exhausted, nauseated, or recovering from the last dialysis treatment, the burden may outweigh benefits.

• What are your goals for your remaining time? If your goal is maximum time regardless of how you feel, continuing dialysis makes sense. If your goal is feeling as comfortable as possible and spending meaningful time with loved ones, hospice may better align with those values.

• What would an acceptable day look like? If you can’t imagine having many more “acceptable” days while continuing dialysis, it might be time to consider alternatives.

When Dialysis Becomes More Burden Than Benefit

For Ruth, a 79-year-old grandmother from Broken Arrow, dialysis had become unbearable. After each treatment at her Fresenius Kidney Care center, she felt so weak and nauseated that she spent the next 24 hours in bed. She had congestive heart failure and diabetes, and her mobility had declined to the point where she needed a wheelchair.

“I realized I was existing, not living,” Ruth shared with her nephrologist at Saint Francis Hospital in Tulsa. “Every week was just about surviving the next dialysis treatment. I wanted whatever time I have left to be about being with my family, not sitting in a dialysis chair feeling miserable.”

Ruth’s story is common. When treatments consume life rather than enhancing it, stopping becomes a rational, compassionate choice.

How to Discuss with Nephrologist and Family

Starting the conversation about discontinuing dialysis requires courage, but your nephrologist has likely had this discussion many times and can provide guidance.

Talking to Your Nephrologist:

• Be honest about how you’re feeling physically and emotionally
• Express your concerns about quality of life
• Ask about expected timeline without dialysis
• Request a referral to hospice for information (this doesn’t commit you)
• Ask about palliative care as a middle option if you’re not ready for hospice

Most nephrologists in Oklahoma, including those at University of Oklahoma Physicians and INTEGRIS Health, support patient autonomy in this decision and can connect you with hospice resources.

Talking to Family:

• Share your feelings openly rather than making the decision in isolation
• Help family members understand that this is about choosing comfort, not “giving up”
• Explain that you’ll receive excellent care through hospice, not be abandoned
• Listen to their concerns and fears
• Consider family counseling or social work support through the dialysis center

Patient Autonomy and the Right to Refuse Treatment

In the United States and under Oklahoma law, you have the absolute right to refuse medical treatment, including dialysis. Choosing to stop dialysis is not suicide—it’s allowing a natural disease process to take its course while receiving compassionate comfort care.

The Oklahoma Health Care Authority and Oklahoma Advance Directive laws affirm that:

• Competent adults can refuse any medical treatment
• Stopping dialysis is legally and ethically equivalent to never starting it
• Healthcare providers must respect patient decisions about treatment
• Hospice is an appropriate care option when life-sustaining treatment is discontinued

No one can force you to continue dialysis against your wishes. Your autonomy and values matter most in this deeply personal decision.

What Hospice Provides for Kidney Disease Patients

When you transition to hospice after stopping dialysis, you’re choosing comprehensive comfort care that addresses physical, emotional, and spiritual needs.

Symptom Management Without Dialysis

Hospice teams specialize in managing the symptoms that arise when dialysis stops:

Fluid Retention:

• Gentle diuretics if the patient still produces urine
• Positioning to reduce swelling and improve comfort
• Limited fluid intake to prevent uncomfortable bloating
• Monitoring for respiratory distress from fluid overload

Nausea and Loss of Appetite:

• Anti-nausea medications like ondansetron or promethazine
• Small, frequent meals of favorite foods without dietary restrictions
• No pressure to eat if appetite is gone—focus shifts to comfort
• Treatment of metallic taste and dry mouth

Fatigue and Weakness:

• Energy conservation strategies
• Assistance with all daily activities as needed
• Comfortable positioning and frequent repositioning to prevent discomfort
• Permission to rest and sleep as much as needed

Itching (Uremic Pruritus):

• Topical lotions and moisturizers
• Medications to reduce itching sensation
• Cool compresses and gentle skin care
• Addressing dry, uncomfortable skin

Managing Uremia Symptoms

As waste products accumulate in the blood, uremia causes symptoms that hospice manages expertly:

Confusion and Mental Fog: Uremic encephalopathy often causes gradual confusion, reduced awareness, and eventually peaceful unconsciousness. This is not painful or distressing for the patient, though it can be difficult for family to witness. Hospice nurses help families understand that increasing sleepiness is a natural, comfortable part of the dying process.

Respiratory Comfort: If fluid accumulates in the lungs causing shortness of breath, hospice provides:

• Oxygen therapy for comfort (not to prolong life)
• Medications like morphine to ease the sensation of breathlessness
• Positioning to optimize breathing
• Reassurance to reduce anxiety about breathing changes

Restlessness and Agitation: Some patients experience terminal restlessness in the final days. Hospice addresses this with:

• Calming medications
• Quiet, peaceful environment
• Gentle touch and soothing voices
• Music therapy and spiritual support

Pain Control and Comfort Measures

Many kidney disease patients have other sources of pain—arthritis, diabetic neuropathy, peripheral vascular disease. Hospice provides comprehensive pain management:

• Opioid medications (morphine, oxycodone, hydrocodone) adjusted to achieve comfort
• Non-opioid pain relievers when appropriate
• Topical treatments for localized pain
• Massage and positioning for comfort
• No restrictions based on kidney function—comfort is the priority

All hospice medications related to the terminal diagnosis are provided at no cost to the family, delivered directly to the home.

Family Education and Support

Perhaps most importantly, hospice supports families through this difficult transition:

Education About What to Expect: The hospice nurse explains the natural dying process after stopping dialysis, helping families understand what’s normal and what to watch for. This reduces fear and helps families feel prepared.

24/7 Availability: Hospice provides a phone number families can call anytime, day or night. A nurse is always available to answer questions, provide guidance, or make a home visit if needed.

Emotional and Spiritual Support:

• Social workers help with grief, family dynamics, and practical concerns
• Chaplains offer spiritual support regardless of religious affiliation
• Bereavement counselors provide grief support that continues for 13 months after death

Respite Care: If family caregivers need a break, hospice can arrange short-term inpatient respite care (up to five days) to give caregivers time to rest.

What to Expect After Stopping Dialysis in Oklahoma

Understanding the typical progression helps families feel prepared and less frightened by the changes they’ll observe.

Timeline: Typically 7-14 Days Without Dialysis

While every person’s experience is unique, most kidney disease patients who stop dialysis follow a general pattern:

Week One:

• Relieved feeling from stopping exhausting treatments
• Possible temporary improvement in energy and appetite
• Gradual increase in sleepiness and decreased interest in eating
• Continued awareness and ability to communicate

Week Two:

• Increased sleeping, less time awake
• Decreased appetite and fluid intake
• Gradual withdrawal from surroundings
• Peaceful transition toward unconsciousness

Beyond Two Weeks:

• Most patients have passed away by day 14-15
• Some live slightly longer with good symptom management
• Death is typically peaceful, occurring during sleep

Maria, whose father discontinued dialysis at age 86 in Muskogee, shares: “I was terrified he would suffer, but the hospice team managed everything so well. He was comfortable every single day. He slept more and more, and one morning about ten days after he stopped dialysis, he passed away peacefully with family at his bedside. Hospice made it possible for him to die with dignity, at home, exactly as he wanted.”

Physical Changes Families Should Expect

Seeing your loved one change can be distressing. Knowing what’s normal helps:

Changes in Consciousness: Increasing sleepiness, less responsiveness, eventual unconsciousness. This is the body’s natural protective mechanism and isn’t painful.

Changes in Breathing: Breathing may become irregular—fast, then slow, with pauses. “Cheyne-Stokes respirations” are common at end of life. Congestion may occur as the body loses the ability to clear secretions. These patterns sound worse than they feel to the patient.

Changes in Skin:

• Coolness in hands and feet as circulation slows
• Mottling (blotchy purple/blue coloring) on legs and arms
• Swelling from fluid retention
• Yellowish tint or pallor

Changes in Eating and Drinking: Complete loss of interest in food and fluids is normal and natural. Forcing food or fluid causes discomfort. Small ice chips or moistened mouth swabs provide comfort without burden.

How Hospice Keeps Patients Comfortable

Throughout this process, the hospice team ensures the patient remains comfortable:

• Medications administered on schedule and adjusted as needed
• Regular nursing visits to assess comfort and make changes
• Equipment like hospital beds, oxygen, and special mattresses
• Supplies like pads, gloves, and comfort items
• Continuous communication with family about changes

Support for Family During This Time

The hospice team recognizes that this is extraordinarily difficult for families:

• Regular check-ins from nurses, social workers, and chaplains
• Validation of emotions and grief
• Practical guidance on how to provide care
• Encouragement to talk to your loved one, play music, and maintain connection
• Permission to take breaks and care for yourself
• Preparation for the dying process and what to do when death occurs

How to Start Hospice for Kidney Disease in Tulsa and Muskogee

If you’ve decided to stop dialysis and pursue hospice care, here’s how to begin.

Talking to Your Nephrologist About Hospice

Your nephrologist is the starting point for hospice referral. Schedule an appointment specifically to discuss this topic:

• Express your desire to discontinue dialysis
• Ask for a referral to hospice
• Request physician certification for hospice eligibility
• Discuss timing—some people stop dialysis immediately, others attend a final few sessions while arranging hospice

Most nephrologists in the Tulsa and Muskogee area, including those at Oklahoma Nephrology Associates, Kidney Care of Oklahoma, and hospital-based practices, are familiar with hospice referrals and support patient decisions.

Getting Physician Certification

Hospice requires certification from a physician stating that the patient has a life expectancy of six months or less. For kidney disease patients stopping dialysis, this is usually straightforward since the timeline without dialysis is well-established.

Your nephrologist or the hospice medical director can provide this certification.

Coordination Between Dialysis Center and Hospice

Once you decide to stop dialysis:

1. Final Dialysis Session: Some patients choose to have one final treatment while hospice is being arranged. Others stop immediately.

2. Dialysis Center Notification: Your nephrologist or the dialysis center social worker notifies the facility of your decision.

3. Vascular Access: The fistula or catheter used for dialysis can be left in place—it doesn’t need to be surgically removed unless it’s causing discomfort.

4. Medical Records: The dialysis center provides records to the hospice team so they understand your complete medical history.

5. Hospice Enrollment: Within 24 hours of initial contact, the hospice team conducts an assessment and begins providing care.

Facilities like DaVita Dialysis Centers throughout Tulsa and Fresenius Kidney Care locations in Muskogee and surrounding areas work regularly with hospice providers and facilitate smooth transitions.

Resources in Tulsa and Muskogee

Oklahoma Kidney Foundation Phone: (405) 840-9000 Address: 4708 E 67th St, Tulsa, OK 74136 Website: www.oklahomakidney.org Hours: Monday-Friday, 8:00 AM - 5:00 PM Services: Kidney disease education, patient support groups, financial assistance programs, connection to resources

National Kidney Foundation Cares Patient Help Line Phone: (855) NKF-CARES (855-653-2273) Website: www.kidney.org Services: Information about kidney disease, treatment options, stopping dialysis, hospice resources, and support

Oklahoma Health Care Authority (SoonerCare) Phone: (800) 987-7767 Address: 4345 N Lincoln Blvd, Oklahoma City, OK 73105 Website: www.okhca.org Hours: Monday-Friday, 8:00 AM - 5:00 PM Services: Information about Medicaid hospice benefits, SoonerCare enrollment for kidney disease patients

American Kidney Fund Phone: (866) 300-2900 Website: www.kidneyfund.org Services: Financial assistance for dialysis patients, treatment information, educational resources about ESRD and hospice

Tulsa Area Agency on Aging Phone: (918) 596-7688 Website: www.incog.org/aging-services Services: Senior support services, caregiver resources, connection to community programs

Frequently Asked Questions

How long can someone live without dialysis?

Without dialysis, most people with complete kidney failure live approximately 7-14 days, though this varies based on residual kidney function, overall health, fluid intake, and other factors. Some patients live slightly longer (2-3 weeks), while others pass more quickly. Hospice manages symptoms throughout this time to ensure comfort.

Will stopping dialysis be painful?

No. With proper hospice symptom management, stopping dialysis is not painful. Patients typically become increasingly sleepy and peacefully slip into unconsciousness as waste products build up. Hospice provides medications to manage any discomfort, nausea, breathing difficulties, or restlessness that may occur.

Can we change our mind after stopping dialysis?

Yes, you can choose to resume dialysis if you change your mind, especially in the first few days after stopping. However, once waste products have accumulated significantly (usually after 7-10 days), restarting dialysis may not be medically advisable or effective. Discuss this possibility with your nephrologist before making the decision to stop.

What if the patient wants to eat whatever they want after stopping dialysis?

One of the benefits of stopping dialysis and enrolling in hospice is freedom from dietary restrictions. Patients can eat and drink whatever they want without worrying about potassium, phosphorus, or fluid limits. However, most patients naturally lose appetite as uremia progresses. Families should offer favorite foods but not pressure eating.

Will the patient be thirsty after stopping dialysis?

As the body shuts down, the sensation of thirst typically diminishes. Most patients don’t feel thirsty even though they’re drinking very little. Hospice teaches families to provide small amounts of fluids, ice chips, or mouth swabs for comfort without forcing large amounts that could cause bloating or breathing difficulty.

Does Medicare cover hospice for kidney disease?

Yes, Medicare Part A fully covers hospice care for kidney disease patients who meet eligibility criteria (life expectancy of six months or less, certified by a physician). There are no out-of-pocket costs for hospice services, medications related to kidney failure, medical equipment, or nursing care. Oklahoma’s SoonerCare (Medicaid) and most private insurance also cover hospice.

Can dialysis patients receive hospice while continuing treatment?

Generally, no. Standard hospice requires that curative or life-prolonging treatments be discontinued. However, some patients pursue concurrent care or palliative care (which provides symptom management alongside continued dialysis). This option is available through some Medicare Advantage plans. Discuss with your nephrologist and insurance provider.

What happens to the dialysis access (fistula or catheter)?

The vascular access used for dialysis (fistula, graft, or catheter) can remain in place when dialysis stops. It doesn’t need to be surgically removed unless it becomes infected or causes discomfort. Most patients leave it alone and it causes no problems.

Will hospice provide care at home, or does the patient go to a facility?

Most kidney disease hospice patients receive care at home. Hospice brings medical care, equipment, and support to wherever the patient lives—a private home, apartment, assisted living, or nursing home. Inpatient hospice care in a facility is available if symptoms become too difficult to manage at home, but the majority of care occurs at home.

How do we tell family members about the decision to stop dialysis?

This conversation is difficult but important. Consider having a family meeting with your nephrologist or hospice social worker present to answer questions and provide support. Explain your reasons focusing on quality of life, your values, and your goals for remaining time. Share information about what hospice provides so family understands you’ll receive excellent care. Allow family members to express emotions and ask questions. The hospice team can provide family counseling to help everyone process this decision.

Conclusion: Honoring Autonomy and Choosing Comfort

Deciding to stop dialysis and transition to hospice care is one of the most courageous, personal decisions a person can make. It’s not giving up—it’s choosing quality over quantity, comfort over treatment burden, and meaningful time over exhausting medical interventions.

For kidney disease patients in Tulsa, Muskogee, and throughout Oklahoma, hospice provides expert symptom management, compassionate support, and the freedom to focus on what matters most in the time that remains. You’ll be comfortable. You’ll be surrounded by loved ones. You’ll have control over your final chapter.

If you or someone you love is considering stopping dialysis, reach out to your nephrologist about hospice referral. Ask questions. Explore your options. You have the right to make this decision, and hospice teams are ready to support you with dignity, compassion, and excellent medical care.

Your life, your choice, your comfort—hospice honors all three.