End of life planning for those with specific chronic conditions: Topic – Kidney Failure
“End-of-Life Care planning (aka: Palliative Care or Advanced Illness Management) is essential for kidney failure patients.”
Dr Robert Bear, Nephrologist, Blogger, Tweeter and Author
Dr Robert Bear, whom I met via twitter (@RobertAllenBear) educates me on end of life decisions faced by those with end stage kidney disease – also called kidney failure.
“While many frail and elderly patients with kidney failure will not choose dialysis treatment, for those that do the annual death rate on dialysis is 15-20%; and, overall, about 20% of long-term dialysis patients will ultimately decide to withdraw from it. “
As Dr Bear reminds me:
“60 years ago, doctors would give mostly comfort care to those with end stage renal disease
(ESRD) These days, specialists who provide that kind of care are in short supply”
Today, for those with ESRD, comfort seems less emphasized than dialysis, now an option, thanks to medical advancements. It wasn’t until I saw ‘Gayla’s Goodbye’ and heard first-hand why she decided not start dialysis, that I began to understand its impact on life:
”My mother had kidney failure (ESRD) and went on Dialysis. She got more and more exhausted from those trips to the clinic. They took up so much of her life. It’s not for me.”
Gayla subsequently died peacefully at home. Dr. Bear describes dying of ESRD as ‘typically a painless death’:
“As the poison levels rise she would’ve spent more time sleeping. Essentially, she would have ‘slept away’. [blogger’s note: isn’t that how we all want to go?] “If patients are in hospice care, troublesome symptoms like shortness of breath are easily controlled.”
Why is that that comfort, quality of life and the natural progression of the disease (ESRD inevitably causes death) seem downplayed to the point of hardly being mentioned? For Dr Bear, one of the reasonsis that patients and physicians alike don’t want to talk about these things – neither are trained or accustomed to take on these uncomfortable topics.
Dialysis patients are not aware of their poor prognosis and falsely assume they can be kept alive indefinitely on dialysis; end-of-life issues are commonly avoided until late in the illness.
Many health professionals believe that ACP (Advance Care Planning) may destroy hope and that the focus of care should be on their “life-sustaining therapy,” such as dialysis.
“In the ideal world there’d be a discussion about natural history of kidney failure – understanding that disease is progressive even when a person is on dialysis. Through discussion, patients and family would come to the realization that – it’s not a rose garden – but quality of life is paramount. Compassionate care in ESRD often called the ‘Conservative approach to ESRD’ meaning you will not be left in pain or uncomfortable. Will not be abandoned or left to die. ”
By contrast, dialysis for some can be a bed of thorns, starting with painful surgery necessary for the dialysis hook up, burdensome trips to and from the hospital/clinic 3 times a week, for 4-5 hours each.
“With advanced age come higher rates of complication, so elderly and frail patients who choose dialysis are often in and out of the hospital. After going through all of that, their life expectancy is often only a matter of months. That’s why elderly patients should receive advice about receiving compassionate care only. Some studies have shown that life expectancy for elderly and frail patients who choose compassionate care may be just as long as for those who choose dialysis.“
Important to note is that those with Chronic Kidney Disease (CKD) may never progress to ESRD, and so may never have to face the dialysis decision. There are some indicators – high blood pressure, diabetes and high levels of protein in the urine that identify those whose disease is most likely to progress. (But Dr Bear describes predicting which patients will and which patients won’t progress as somewhat of an art and a challenge).
CKD may not lead to ESRD, but EPERC cautions:
ACP (Advance Care Planning) should be initiated prior to the need for dialysis. The importance of early discussions is underscored by the fact that only ~ 60% of nephrologists would consider stopping dialysis for a non-decisional patient with unclear prior wishes.
Dr Bear laments:
“End of Life/Advanced Illness Management for patients on dialysis is not an area where we’ve distinguished ourselves.”
Indeed, I was taken aback reading wording from the Mayo Clinic site:
If you’re unwilling to have dialysis or a kidney transplant, a third option is to treat your kidney failure with conservative measures. However, your life expectancy generally would be only a few weeks in the case of complete kidney failure.
Are those with ESRD once again ‘victims’ of medical success? According to Dr. Bear:
“Ability to extend life has created a larger population of older patients with multiple morbidities (meaning two or more chronic medical conditions) .”
Dr. Bear blogs beautifully of his feelings about the EOL Care of patients with kidney failure, and where we are with it. And in his novel, Sorrows Reward, a whole chapter is devoted to dialysis patient perspectives on death and dying.
Should I go on Dialysis, Doc? Canadian Family Physician http://www.cfp.ca/content/58/12/1353.full
The Renal Association: Information about proceedures for patients http://www.renal.org/whatwedo/InformationResources/ProceduresForPatients.aspx
Palliative care: End-stage renal disease http://www.uptodate.com/contents/palliative-care-end-stage-renal-disease – H8
Gayla’s Goodbye part of Mercury News Cost of Dying series http://www.mercurynews.com/cost-of-dying-video