Kidney failure is a serious condition that occurs when the kidneys can no longer filter waste products from the blood. When the kidneys fail, treatment with dialysis is often started to take over the kidney’s job of filtering waste from the blood. Dialysis involves using a machine to filter waste products, salt, and extra water from the blood when the kidneys are no longer able to perform this function.
While dialysis is life-sustaining for many people with kidney failure, it is not a cure. Dialysis enables people to live longer, but it has significant demands and impact on quality of life. As a result, some people reach a point where they feel dialysis is doing more harm than good. Deciding when to stop dialysis treatment can be extremely difficult both for the patient and their loved ones. This article provides an overview of factors to consider when deciding whether to stop dialysis treatment.
What are the reasons someone might decide to stop dialysis?
There are a few key reasons a patient may decide to stop dialysis treatment:
– Poor quality of life – The dialysis routine and side effects can greatly reduce quality of life. Frequent clinic visits for dialysis and dietary/fluid restrictions impact independence and enjoyment of life for some people.
– Loss of ability to function – Serious illnesses like dementia, strokes or advanced heart failure may impair physical or mental capability to the point the patient can no longer cooperate with treatments.
– Treatment complications – Issues like infections, low blood pressure, and other dialysis side effects may become intolerable.
– Emotional/psychological burden – Some patients experience depression, anxiety, loneliness or loss of dignity from chronic dialysis treatment.
– Personal preferences – Patients have right to stop treatments they no longer want. Personal, cultural, religious or spiritual beliefs may shape preferences.
– Financial factors – Costs of ongoing dialysis may influence decisions for a small number of patients.
The decision to stop is very personal based on how an individual patient views their quality of life and priorities. A patient reaching this decision typically has very serious medical issues impacting their wellbeing.
What is the life expectancy after stopping dialysis?
Patients with kidney failure who stop dialysis will generally pass away within a short period of time. Once dialysis is discontinued, toxins and fluids build up, leading to death typically within a few weeks. However, life expectancy after stopping can vary quite a bit depending on the individual patient’s overall health status.
Some key factors impacting life expectancy when dialysis is stopped:
– Level of kidney function – Patients with a small amount of remaining kidney function may live slightly longer than those who are fully dependent on dialysis.
– Other medical conditions – Co-existing illnesses like diabetes, heart disease and vascular disease tend to decrease life expectancy when dialysis ends. Patients with multiple medical problems often decline more rapidly.
– Performance status – A patient’s functional abilities and level of activity impact expected survival. Bedridden patients tend to decline faster.
– Nutritional status – Patients who are malnourished with muscle wasting tend to live for shorter periods once dialysis stops.
– Age – Younger patient age (under 70 years old) correlates with slightly longer survival by a matter of days to weeks.
– Rate of uremia when dialysis ends – How high the blood urea level is (uremia) affects short-term prognosis.
Overall, the typical life expectancy after cessation of dialysis ranges from 7 to 21 days for most patients. However, some patients deteriorate much sooner, while a minority may live for several months. Accurately estimating life expectancy is challenging, so patients and families should be prepared for unpredictability.
What happens to the body when dialysis stops?
Stopping dialysis leads to a condition called uremia, which refers to the buildup of toxins in the blood. This occurs because the kidneys can no longer filter waste products when dialysis is discontinued.
Some of the key effects of uremia on the body include:
– Accumulation of fluid – Excess fluid builds up in the lungs, legs, hands and other tissues causing swelling. Fluid in the lungs impairs breathing.
– Electrolyte imbalances – Abnormal levels of sodium, potassium, and other electrolytes can lead to numbness, heart rhythm changes, confusion.
– Toxins in the blood – Toxins normally removed by dialysis accumulate. Toxins can cause itching, fatigue, headaches, nausea, seizures.
– Changes in mental status – Fluid buildup and toxins impact brain function, potentially leading to reduced consciousness and confusion.
– Reduced nutrition – Poor appetite and intake exacerbates protein and calorie malnutrition. Muscle wasting and weight loss result.
– Heart changes – Fluid overload strains the heart leading to shortness of breath, fluid in the lungs. Heart rhythm abnormalities may occur.
– Weakened immune system – Risk of infections can increase due to uremia’s effects on white blood cells.
The timing and severity of these symptoms can vary. Decline often starts with fatigue and confusion, followed by seizures, coma and eventually death. However, the course near death is difficult to predict.
What are the signs death is approaching?
There are some common signs and symptoms that indicate a patient who has stopped dialysis is likely to pass away in the near future:
– Decreased consciousness – Progressive drowsiness, confusion, unresponsiveness signaling the body is shutting down.
– Minimal urine output – Little to no urine output in the last days of life.
– Difficulty swallowing – Swallowing problems develop, along with lack of interest in eating/drinking.
– Labored, irregular breathing – Congestion in the lungs can cause noisy “rattling” breathing. Patterns may become sporadic.
– Limited speech – Responding becomes difficult, and words are slurred or incoherent.
– Agitation – Unexpected restlessness or pulling at clothing may occur.
– Physical changes – Skin becomes cool, extremities mottled, eyes sunken. Blood pressure drops significantly.
– Emotional changes – Anxiety, depression or withdrawal from social interaction is common.
– Pain – Despite uremia, some patients experience pain from other conditions near end of life.
– Odor – A sweet, pungent odor can permeate the room as death nears due to chemical changes.
– Death rattle – A gurgling sound in the throat caused by saliva and mucus buildup.
These signs indicate death is likely within days to hours. However, it is difficult to make precise predictions. Having hospice care and family support can ease this challenging transition.
What preparations and care should be made when dialysis stops?
Careful preparations should be made when the decision is made to stop dialysis to ensure the patient’s comfort:
– Choose the location of care – Many patients transition to home hospice or an inpatient facility for care at end of life. This decision depends on family and home support available.
– Arrange hospice care – Hospice provides medical, emotional and spiritual support for patient and family when dialysis stops. They help manage pain and symptoms.
– Allow visitors – Let loved ones spend time with and say goodbye to the patient in the final days according to their wishes.
– Provide comfort – Keep the patient clean, dry, and change position regularly. Use pillows for support. Moisten lips and mouth.
– Adjust medications – Certain blood pressure medications or fluids/nutrition may be stopped. Medications for comfort are continued, especially pain relievers.
– Offer emotional support – Listen to patient feelings and concerns. Provide reassurance dying patient will not be abandoned and their wishes for end of life care will be honored.
– Respect food preferences – Small amounts of favorite foods and drinks may be offered if desired.
– Honor spiritual needs – Connect patient with spiritual counselor and perform meaningful rituals according to belief system.
– Allow time for closure – Give patient and family members space to have important conversations and say goodbye in their own way.
With compassionate care and shared decision-making, stopping dialysis can be an appropriate transition at end of life.
What are the criteria for Medicare hospice benefits for dialysis patients?
Medicare provides a hospice benefit which covers comprehensive comfort care, pain management, and support services when a patient is considered terminal with less than 6 months to live. To qualify for hospice due to end stage kidney disease when stopping dialysis, Medicare looks for these general criteria:
| Criteria | Description |
|---|---|
| Kidney function | No kidney function or very minimal urine output (typically under 100 ml/day) |
| Nutritional status | Significant protein and calorie malnutrition indicated by low serum albumin, weight loss, muscle wasting |
| Co-morbidities | Presence of serious co-existing illnesses like heart disease, diabetes, dementia that impact prognosis |
| Decline in well-being | Intractable nausea/vomiting, falls, recurring infections, new confusion signal overall decline |
| Consent | Patient and family understand and consent to palliative hospice care instead of dialysis |
Medicare’s criteria focus on indicators that the patient has advanced kidney failure and is declining despite dialysis. However, the hospice benefit does not require proving specific life expectancy. The patient, family and doctors simply need to agree life prolonging dialysis treatment is no longer desired.
What questions should patients and families ask about stopping dialysis?
Stopping dialysis is an incredibly difficult decision that should be made only after thorough discussions with the kidney care team. Patients, family members and surrogate decision makers should consider asking these key questions:
– How much longer can I expect to live if I continue dialysis? This helps set realistic expectations about prognosis.
– What symptoms and changes can I expect if dialysis stops? Understanding the dying process reduces fear of the unknown.
– What palliative care and hospice options are available? Learning about comfort care helps make informed choice.
– Who can I talk to for help with this decision? Asking for guidance from trusted medical and spiritual advisors provides perspective.
– What activities or goals are most important to me? Reflecting on personal priorities helps frame the decision.
– What do my loved ones think about stopping dialysis? Getting input from family helps identify potential consensus or conflict.
– Am I able to choose to stop if that feels right to me? Patients need to know they have the right to stop.
– Will I be able to remain comfortable and die peacefully if I stop? Realistic assurance about end of life care provides reassurance.
By encouraging dialogue and answering these questions honestly, the medical team helps patients and families make the best decision for their individual situation.
What are some reasons a doctor might recommend stopping dialysis?
While the decision to stop dialysis is highly personal, there are some situations where a nephrologist might suggest it is medically appropriate for a patient to transition to end of life care without dialysis:
– All medical problems cannot be solved – Multiple comorbidities and frailty despite aggressive efforts
– Frequent hospitalizations – Repeated health crises and temporary discontinuation of dialysis
– Lack of rehabilitation potential – Loss of ability to function independently due to dementia, stroke, etc
– Solo dialysis unsuitable – Inability to safely perform dialysis alone at home
– Infection risks – Recurring bloodstream infections despite preventive treatment
– Intradialytic complications – Persistent symptoms during dialysis sessions like low blood pressure
– Poor nutrition – Cachexia and muscle wasting despite dietary interventions
– Advanced age and debility – Overall decline associated with aging even without specific event
– Repeat expressing wish to stop – Consistently articulating desire to discontinue dialysis
– Religious/cultural beliefs – Values against artificial life prolongation
The doctor aims to make the recommendation with care, sensitivity and respect for patient autonomy. However, they may have the obligation to gently raise stopping dialysis if ongoing treatment seems non-beneficial.
What are some indicators dialysis should be continued?
There are also many situations where continuing dialysis maximizes wellbeing and aligns with the patient’s goals. Reasons a physician would likely encourage a patient to continue with dialysis treatment include:
– Medical stability – Overall stable health when on dialysis. Few hospitalizations when getting regular treatments. Able to maintain suitable dry weight.
– Good functionality – Able to perform normal activities of daily living independently or with minimal assistance. Able to ambulate without major limitation.
– Adequate nutrition – Maintaining reasonable appetite. Serum albumin and other nutrition markers at acceptable levels. No major weight loss.
– Effective dialysis – Treatments are well tolerated. Minimal intradialytic complications. Blood chemistries maintained in target ranges.
– Positive quality of life – Expresses enjoying time with family, hobbies, community engagement. Reports acceptable quality of life.
– Goals for future – Looking forward to life events like family visits, vacations, holidays. Has bucket list items not yet fulfilled.
– Lack of definitive decline – No major hospitalizations recently. No evidence of precipitous worsening health signaling end of life.
– Reversible conditions – Temporary setbacks like influenza are improving. Recent loss of function could get better with strength training.
– Family conflict – Disagreement among loved ones about whether stopping dialysis is appropriate.
Overall, if the burdens of dialysis appear manageable and wellbeing remains stable, continuing treatment aligns with goals of care for most patients.
Conclusion
Deciding when to stop dialysis is an intensely personal choice based on each patient’s unique situation. There are many complex medical and emotional factors to weigh when evaluating if the burdens of continuing dialysis outweigh the benefits. Patients, families, and physicians should engage in shared and informed decision making to reach the choice that best aligns with the patient’s priorities and goals of care. With supportive medical care and compassionate hospice services, stopping dialysis can allow for a peaceful death when this feels like the right decision. However, dialysis remains a life-sustaining treatment that should be continued if it is enabling an acceptable quality of life. Open communication and tailored care planning driven by the individual’s values can help inform the right path forward.