Recall that I told the story of a 64-year old patient
who I had been managing for the past 5 years. Lately, her eGFR had been around
5 ml/min/1.73m2. She had been doing pretty well, but when I saw her recently
she had developed mild uremia and I recommended initiation of dialysis. The
patient became frightened and emotional about the prospect of starting
dialysis. Several readers wondered what happened to her? How did she do?
An update on the patient: when I saw her in the clinic
I spent most of my time reassuring
her about the procedure itself and the impact of dialysis on her life. She had
heard this at prior visits, but said that she hadn't focused on it -- "just didn't think it was me that you were talking about". In my patient’s case she had been educated and counseled extensively about starting dialysis. She knew what symptoms to expect. She had already visited a dialysis center near to her; there she had met nurses and other patients. Still, when the day came she had an emotional reaction.
Handling the transition from CKD to ESRD isn’t easy even
under the best of circumstances. Patients, like all of us, react differently when
we are faced with some dreaded news. Preparing patients for the day is exactly
what we must do, but the information that we provide is not always absorbed. And, even if it is absorbed, the reaction to it may vary based on the cultural, socioeconomic, and religious background of the patient.
There are resources one could consult about the transition
from CKD to ESRD. Both the RPA and the NKF have guidelines that one can google; I liked an AAKP article for patients. Robert Jan Kossmann in the November 2011 issue of Advances in Chronic Kidney Disease (ACKD) discusses the transition from pre-ESRD CKD to ESRD; however, an older article by Hutchinson from 2005 in Palliative Medicine is better at capturing the emotional aspects.
I can’t be certain that my patient who became emotional about dialysis was influenced by
what she had read - the story about dialysis published in Parade probably didn't help. Dialysis is a tough, difficult, and at times painful
experience, but it remains a
life-saving procedure.
Why transition from CKD to ESRD at all? The sooner we rid ourselves of the term ESRD the better. That's because most people consider it the end of thier life and not the end of their kidneys. Why is it so difficult to understand this.
ReplyDeleteIt's when people don't have a positive attitude that they begin the debilitation spiral. This particular patient was 64. How about another younger person whi is gainfully employed? What will transitioning to in-center conventional dialysis do to this person. Most likely within a short period of time, s/he will be quitting their job because of schedule conflict or just beginning to feel to crappy and washed out.
For the older patient, it might mena withdrawal from family, friends and community. Why did this particular person vist a dialysis center and not a visit to see a home patient, or talk to a home patient. Of course she was frightened and emotional. Under those conditions, wouldn't you?
Interesting questions.
DeleteWas this patient informed about such alternative modalities, including both PD and home hemodialysis, prior to making an informed choice? (Doesn't the law *require* this?) She had been "extensively educated and counseled." She visited a center. Yet, she was still distraught. Yes, it is possible she has avoiding thinking this through and making her choices prior to now, but maybe the problem isn't that she "didn't absorb" the information she was provided. Maybe she DID.
I know I certainly "absorb" information about dialysis, and the more I learn, the more I learn what to fear.
ReplyDeleteWell, I'd love to be able to read the full texts of the abovementioned articles, but I can't access them. The ACKD article costs over $30, and the Pallitive Medicine article seems to be hidden away somewhere. I know quite a few pre-dialysis patients who would benefit from this information, but as usual, good information is either costly or too hard to find.
ReplyDeleteOften the authors will send you a free courtesy copy if you request.
DeleteOne last comment from me (for now!)...
ReplyDeleteI'd be interested to learn more about how a nephrologist sees his/her role in the "extensive education and counseling" process. Do you ever refer an anxiety and fear-ridden patient for therapy or professional counseling? Do you perhaps have a list of local therapists who are experts in dealing with people who struggle with the implications of a diagnosis of CKD/ESRD?
Do nephs in general see the emotional/psychological health of their ESRD patients as part of their purview?
My neph has never asked me about my cultural, religious or socioeconomic background! Dr Singh, do you know these things about your patients? How does this shape the patient's emotional response to the initiation of dialysis? Does a Jew react differently than a Christian or a Muslim? Does a city dweller react differently than a rural farmer? I can see where a poor person without insurance might react differently than someone with adequate financial resources, although isn't ironic that for far too many people in the US, the initiation of dialysis usually means loss of work, loss of income and loss of access to insurance, so the very treatment that saves their life also moves them from one socioeconomic rung to another (always lower).
The lady that you have described to us...did you know her cultural, religious and socioeconomic background, and do you think this shaped her emotional response? If so, how?
Thank you very much for addressing these questions!
"Here, read some articles!" Really?
ReplyDeleteMany integrated cancer treatment centers today have full time social workers, counselors, spiritual care etc. available on site.
Now tell me, how many nephrology clinics bother to do this, despite outcomes on average every bit as bad? Disappointing to say the least.
This is so true! I live only 5 minutes from our local community hospital, and on their campus, there is a dialysis clinic but also there is a dedicated Cancer Care center in a separate building. Also, just down the road, there is a "Living Well Cancer Center", and a second, new expanded one has been built right across the street for it! But there is nothing for the dialysis patient outside of the dialysis clinic...no counselors, no spiritual care, no one working for rehabilitative care of these patients...nothing.
DeleteOn top of that, the hospital publishes a small monthly magazine, and on the last two pages, there is a long list of support groups for people with cancer, ALS, bereavement, substance abuse, Huntingdon's, diabetes, obesity, miscarriage, pregnancy, brain tumors and just about anything else you can think of. But there is nothing for renal patients, nothing for transplant patients, nothing for dialysis patients, and I can't help but wonder why this particular population is so ignored and preyed upon by the LDOs.
BTW, Mr Hutchinson very kindly sent me the link to his entire 2005 article in Palliative Medicine
ReplyDeletehttp://www.mcgill.ca/files/wholepersoncare/HutchinsonESRDTransitions.pdf
Dr. Singh, how do you direct your ESRD patients to the kind of care described in Mr. Hutchinson's article?