Hospice of the Comforter

End-stage kidney disease (ESRD) occurs when the kidneys are no longer able to function at a level needed for day-to-day life. It usually occurs when chronic kidney disease has worsened to the point at which kidney function is less than 10% of normal. Most patients with end-stage renal disease, especially those who are not candidates for kidney transplants, have a significantly shortened life expectancy. Around 500,000 persons in the United States suffer from ESRD, with over 87,000 dying each year.

In the United States, dialysis patients live about one-third as long as non-dialysis patients of the same age and gender. The five-year probability of survival for all ESRD patients on dialysis is only 39%; and over the age of 65, it is only 18%. Forty-five percent of new ESRD patients have diabetes (the most common cause of kidney failure), which further shortens their life expectancy , as does hypertension, congestive heart failure, ischemic heart disease, and peripheral vascular disease, also common conditions seen with chronic kidney failure.

ESRD can significantly impact quality of life. Without dialysis or a kidney transplant, death will occur from the buildup of fluids and waste products in the body. Although dialysis treatment has become more tolerable, there is still an emotional and medical toll with long-term treatment. Also, dialysis has become increasingly accepted as a routine medical intervention, and the population receiving this difficult and intrusive treatment has become more elderly, sick, fragile and vulnerable. Between 1996 and 2003, the number of very elderly patients starting dialysis increased from 7054 to 13,577, an average yearly increase of 9.8%. Nearly half of patients over the age of eighty die in the year after starting dialysis.

When transplantation is not or is no longer an option, and dialysis has become burdensome and inadequate at controlling distressing and/or life-threatening symptoms, the person could be described as entering the terminal phase of their disease. Some of the symptoms that can significantly affect quality of life and life expectancy at this point are:

• Fatigue- almost all the time

• Pain (42%)

• Agitation (30%)

• Insomnia (38%)

• Muscle Cramping (36%)

• Pruritis/uncontrolled itching (35%)

• Neuropathic symptoms (29%)

• Dyspnea/shortness of breath (25%)

• Depression (24%)

• Nausea & Vomiting (20%)

At this point, the person and their loved ones are faced with decisions regarding continued treatment and hospice care, where management of the above symptoms would be the primary focus. There are many reasons why someone with ESRD may not want to continue or start dialysis. Some people feel they’ve lived a full life and don’t want additional surgery and treatments. For dialysis, a person will need an access surgically placed and hemodialysis three times/week or peritoneal dialysis every day. Some people who are already on dialysis may feel that the treatment is no longer maintaining or improving their health because they are unable to live independently or enjoy a certain quality of life.

Despite its availability, hospice care is underutilized in the care of terminally-ill ESRD patients with only 13.5% accessing hospice. Of those patients who withdrew from dialysis, only 41.9% used hospice. Underutilization of hospice in the End-Stage Renal Disease (ESRD) or chronic kidney disease (CKD) population is in part due to misunderstanding about eligibility, as well as hospice providers’ variability in accepting these patients.

There is often a question about continuing dialysis when going on a hospice program. Ninety-six percent of patients who have reached the terminal stage of ESRD will live for less than one month after dialysis is discontinued, although there are cases where survival was significantly longer. Usually, when someone is admitted to hospice services with a diagnosis of ESRD, the cost of continuing dialysis would not be covered by the hospice.

Sometimes, however, a person with ESRD is admitted to hospice services because of a co-morbidity, another illness that has now reached the terminal stage. In this case, the person would utilize the Medicare Hospice benefit for their terminal diagnosis other than ESRD, and the patient could continue to use the ESRD Medicare benefit for continuing dialysis, if they felt this was best for their quality of life. Even with a separate terminal diagnosis, however, many choose to stop dialysis because it has become so burdensome, and palliative care offers a better opportunity for symptom management and a peaceful death.

In summary:

• ESRD patients wishing to engage hospice and withdraw from dialysis may use ESRD as the terminal diagnosis for the hospice benefit.

• ESRD patients wishing to engage hospice without withdrawal from dialysis must:

- Have a terminal diagnosis other than ESRD to qualify for the hospice benefit AND retain their ESRD benefit. OR

- Forego their ESRD benefit and engage a hospice willing to cover payment for ESRD services (dialysis) as part of the hospice benefit.

The American Society of Nephrology and Renal Physicians Association recommends that patients, families and physicians consider forgoing or discontinuing dialysis for ESRD patients who have a very poor prognosis or for whom dialysis cannot be provided safely, such as the following:

• Those whose medical condition would interfere with the technical process of dialysis because the patient is unable to cooperate (e.g., an, an advanced dementia patient who pulls out dialysis needles) or because the patient's condition is too unstable (e.g., severe hypotension/low blood pressure).

• Those who have a terminal illness from non-renal causes (acknowledging that some in this condition may perceive benefit from and choose to undergo dialysis).

• Those with Stage 5 ESRD older than age 75 years who meet two or more of the following statistically significant very poor prognosis criteria:

1) clinicians' response of "No, I would not be surprised if this patient died within the year." to the surprise question;

2) significant co-morbidities or secondary conditions;

3) significantly impaired ability to function or care for self (e.g., Karnofsky Performance Status score less than 40); and

4) severe chronic malnutrition (i.e., serum albumin less than 2.5 g/dL .)

In addition, the following indicators may signal readiness for hospice in someone living with ESRD. Please share this knowledge with those you may know who are affected by ESRD so they may receive hospice assistance when needed.

• Specific structural and functional renal impairments

• Creatinine clearance <10c/min (,15 for diabetics)

• Serum creatinine >8mg/dl (>6mg for diabetics)

• Uremia (build-up of toxic wastes)

• Oliguria (Chronic decrease in urine output)

• Intractable hyperkalemia (high levels of potassium)

• Uremic pericarditis (heart infection)

• Hepatorenal syndrome (kidney failure + cirrhosis of liver)

• Intractable fluid overload

The hospice team will see that the patient receives the appropriate pain medication, treatment to relieve symptoms caused by fluid build-up, and other palliative measures to make the person as comfortable as possible. It has been reported in several recent studies that pain is undertreated in 75% of ESRD patients. Physical care isn't the only important way the hospice team supports the patient and family. Withdrawing from dialysis is often an emotionally difficult process—so hospice services provide experts in psychological and spiritual care as well. Hospice staff can help with advance directives and with emotional issues that come when making end-of-life care decisions and with the dying process. With their expertise, symptom management is greatly enhanced by hospice care and the patient is much more likely to die in the home setting if that is what they prefer.

To enhance the partnership between nephrologists, dialysis clinics/units and hospice and palliative care, the American Society of Nephrology and Renal Physicians Association makes the following recommendations which will lead to a continuum of care that assures ESRD patients will receive a higher quality of care at EVERY stage of their illness.

• Asking the “Surprise” question (“Would I be surprised if this patient died in the next year?”) on rounds

• Educational in-services on palliative care topics

• Pain & symptom assessment and treatment protocols

• Promote advance care planning as early as possible

• Honestly and compassionately communicate prognosis and changes in condition

• Palliative care consultations as needed throughout illness

• Referral to hospice when terminally ill

• Quality Improvement with review of quality of death

• Memorial services at treatment centers

_References

_{Cohen LM, Ruthazer R, Moss AH, Germain MJ. Predicting Six-Month Mortality for Patients Who Are on Maintenance Hemodialysis. CJASN 2010; 5:72-79.}

_{Moss A., et. al. Utility of the “Surprise” Question to Identify Dialysis Patients with High Mortality. Clin J Am Soc Nephrol 2008;3:1379-1384.}

_{Murray, A., Arko, C., Chen, S., Gilbertson, D., Moss, A. (2006). Use of Hospice in the United States Dialysis Population CJASN: vol. 1 no. 6, 1248-1255.}

_{RPA/ASN. Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis. 2000.}

_{U.S. Renal Data System, USRDS 2010 Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2010.}