The Silent Suffering of Dialysis-Peter Laird, M.D.-Physician on Dialysis

[NDXUFan]

This should open the eyes of some, I can only hope:

Tuesday, February 07, 2012

The Silent Suffering of Dialysis, By Peter Laird, MD

They say that a tree that falls in the woods make no sound. The philosophical sophomoric discussions of college life have long since passed and have given way to the tasks of daily survival wonder when and if I shall fall myself. On that day, will my demise as a tree in the woods reaching the end of bearing its own wait be met with silence or shall a bit of the universe notice that passing of another of God's creatures.

Last Wednesday, I reminded myself of why I am so fortunate to dialyze in the comfort of my own home. My own headache, queasy stomach, foggy thinking and fatigue was all encompassing to my own soul, yet through all of my own rather pitiful self absorption for having to endure three hours of conventional in-center dialysis was tempered by two lonely souls crippled by the ravages of unrepentant renal disease. On my left, the open chair soon became a source of commotion as two burly ambulance attendants brought the resident of that chair in on a gurney. She never spoke the entire time I was beside her. I had wondered if she was comatose but when the nurse came and silently inserted her needles, she did whimper in pain. About two hours later as the ultrafiltration drained her debilitated body, I heard her one more time moan from presumed cramping.

Tonight I had one of the worst episodes of cramping in both my calfs. For me, cramping is entirely my own fault for not drinking enough fluids during the day and beginning my dialysis session dehydrated. I take only 300 ml from ultrafiltration since I am fortunate to still have significant residual urine function. The memory of my neighbor beside me had already faded from my memory until the sharp pangs of an early cramp warned me of what was to follow. Fortunately, I learned years ago to tell my patients to simply stand and put all their weight on their legs to relieve a cramp in the calf. I remembered my elderly father while I was in medical school suffering from the effects of dehydration after working all day on a windmill garage he designed and essentially built single handed. On that day, I didn't know enough to tell my dad just to stand up. Instead, I can still see him sitting on the floor fallen to the ground unable to do anything but wait until the pain passed.

My neighbor on the right of me in the dialysis unit had no legs and he likewise was silent the entire dialysis session. Except that is until his ultrafiltration levels reached the point where he too began to moan in the agony of a cramp in the stumps that were once healthy and strong legs. I had noticed that he had a small white cloth in his hand. I didn't know what it was for until he began to writhe silently in the first stages of his cramps. He had been through this before and was prepared. I have seen many an old western movie where the doctor gives the patient a cloth to bite down on as they perform an operation without anesthesia. This was the first time in my entire life I actually witnessed a man muffle his own screams with cloth in his mouth.

During this entire time, I never saw a nurse, a doctor, a tech or anyone at all stop their busy gossip and attention to the charts to comfort these two suffering silently in their own way. We can certainly talk about futile and expensive care, but obviously these two broken people still had an unbroken will to live which in the end is the only question we need to answer on whether people should submit to this frequent torment. No one who could intervene and massage the stumps of this man ever appeared to hear anything at all. To them, the sufferings of these two people were completely silent.

The answer to whether a tree makes a sound if it falls in the woods is you must have an observer hear the disturbance in the air that physics tells us occurs every time. I don't know what the solution will be to the silent suffering of thousands of patients every day in dialysis centers, but I know one thing, their suffering did make a noise. I know because I not only heard it, but the noise was so loud and disturbing I felt their silent anguish deep in my own heart. Perhaps one day, the nurses and techs will one day wonder the same thing, does a tree make a sound when it falls in the woods? I hope for their sake that they have someone that heard the noise that will always happen when a soul is in anguish.

http://www.hemodoc.com/2012/02/the-silent-suffering-of-dialysis.html

[traumaRUs, MSN, APRN]

While I don't doubt this occurs, and it certainly did for this patient, not everyone at every dialysis unit is immune to pts complaints and suffering.

I do think though that by lengthening the time of dialysis, you more closely mimic the kidneys own function.

As to the comatose patient, you have to know when to say when. Dialysis should not be life-sustaining. Rather, it should be incorporated into a lifestyle where dialysis improves your life. When you just exist from one treatment from the other, then it is time to have an end of life talk with the family.

[NDXUFan]

While I don't doubt this occurs, and it certainly did for this patient, not everyone at every dialysis unit is immune to pts complaints and suffering.

I do think though that by lengthening the time of dialysis, you more closely mimic the kidneys own function.

As to the comatose patient, you have to know when to say when. Dialysis should not be life-sustaining. Rather, it should be incorporated into a lifestyle where dialysis improves your life. When you just exist from one treatment from the other, then it is time to have an end of life talk with the family.

I agree, some very good points. Yes, by making dialysis longer, you do and can come close to mimic functioning kidneys, think Nocturnal Dialysis. I do agree, that some patients are whiners and complainers, and they need to be told what is reality. Yet, I have met people from both sides of the fence that I did not think much of, they were jerks. There was one patient that was talking about sex to some of the female nurses, I told him that was improper and to shut his mouth or we could settle it when we came off the machine. Yes, I am a loud advocate for patients, that is very true, however, I never tolerated the mistreatment of Nurses or staff who could not stand up for themselves. :)

[MN-Nurse, ASN, RN]

My first job as a CNA in the nursing home, I had a suffering and declining patient who did not want to continue dialysis. He was an active athlete in his younger days and went from being able to walk a few steps when I met him to completely bed and wheelchair bound a short time later.

He began to just close his eyes when you spoke to him. Or he would just stare at you. Hard. While he spit his meds or food out.

His family forced him to go to dialysis 3 times a week.

The dialysis did not stop his decline, it just made it agonizingly slow. Years went by, I moved on to different jobs, made it into and through a nursing program, and started working as an RN in a hospital. Through those years, he kept being wheeled to and from dialysis, dying a slow, tortuous, agonizing death.

I began to hate his family, wondering if they were planning on stuffing him if he ever was fortunate enough to die. To the very end his family insisted on all interventions. During his last decline, they could not even allow him to pass away at the nursing home he spent so many years at with caregivers who knew him and loved him. They had him admitted to the hospital.

He was admitted the floor I work on. He passed away a couple hours after being admitted and I arrived to work that morning. I went to see him and told him how happy I was for him. I know it is cliche to say this, but he looked great - so peaceful.

Dialysis is a great intervention. But as always, it needs to be implemented with good judgement.

[FransBevy]

That article was B.S. "During this entire time, I never saw a nurse, a doctor, a tech or anyone at all stop their busy gossip and attention to the charts to comfort these two suffering silently in their own way"

I might have agreed with a few points here or there but as soon as I read about all this suffering going unnoticed while PCT's, RN's and MD's gossiped blithely was plain garbage. I may not like some of my co-workers but it's the very RARE soul in this business that would not have a compassionate response to any evidence of suffering.

[NDXUFan]

I would like to believe it was garbage, but, I have experienced that type of treatment, myself, that is why I left for home dialysis.

[NDXUFan]

Is it the simple fact you are made uncomfortable by the article or that it might or might not be true?

[Chisca, RN]

that article was b.s. "during this entire time, i never saw a nurse, a doctor, a tech or anyone at all stop their busy gossip and attention to the charts to comfort these two suffering silently in their own way"

i might have agreed with a few points here or there but as soon as i read about all this suffering going unnoticed while pct's, rn's and md's gossiped blithely was plain garbage. i may not like some of my co-workers but it's the very rare soul in this business that would not have a compassionate response to any evidence of suffering.

the problem would be the "evidence of suffering" was subtle. you had to take time to notice it. i can easily see in the factory like setting of most dialysis clinics these small signs of suffering being lost in the chaos of alarms, televisions, productivity and gossip.

[traumaRUs, MSN, APRN]

You know, I do honestly feel bad for my dialysis patients. However, and this is a big however, there are worse diseases - at least ESRD does allow for dialysis. There are many illness that are fatal and have no treatment options.

[Marisette, BSN, RN]

Home dialysis while good for many, will not stop the suffering of dialysis patients. Better care should be provided for our patients at the dialysis centers.

Home peritoneal dialysis has numerous problems, complications such as infection, high glucose and lipid levels for diabetic patients. Sometimes patients cut back on treatment time or treatment days and may not get adequate dialysis. Perhaps, they have a right to do so, but this is an issue for health care providers who cannot help them get to a better level of wellness if they cut back on dialysis treatment. Loss of caregivers and patient burn out from daily dialysis are also issues.

Home hemodialysis is not an option for all patients. Patients are informed they have the choice to perform home hemodialysis, but it is a more costly for the dialysis company than the peritoneal so it is not encouraged. They also have a selection process for determining who will be accepted into the home hemodialysis program. I'm not sure, but I believe insurance is one factor and that medicare will not cover the cost of home hemodialysis completely. Patients need an assistant or caregiver (for emergencies) that is not covered by health care insurance and this can be an issue. Some of the wealthier patients are able to afford a technician to assist them, but the majority can't.

[traumaRUs, MSN, APRN]

Marisette - where are you getting your facts/figures?

Actually home hemo is CHEAPER than in-center which is why its being pushed so strongly right now. Home hemo in my area comes from two places: FMC which requires a patient-supplied partner, NxtStage which has a program where they supply the partner.

Medicare reimburses home hemo quite well which is why in-center pts are being encouraged to go to home modalities.

"Medicare supports home dialysis. If you start a home training program before your third full month of dialysis, your Medicare coverage can start from your first month of dialysis (if you do in-center dialysis, Medicare does not begin until 3 months after the start of dialysis). Medicare will pay your dialysis clinic much more for your first four months of dialysis no matter whether you do in-center dialysis or you do home training. If you start home training later, Medicare will pay a little more for each training session than it has in the past, if your clinic is paid fully under the bundle. If you go to a clinic that provides only home dialysis training and support, it may get a higher rate for each dialysis treatment as a “low volume” clinic. It is possible that the change in payment for dialysis may spur more clinics to start home training programs. This may allow more patients to do PD or home hemodialysis."

Kidney Health Care Coverage

Here's another article from the National Kidney and Urologic Diseases Clearinghouse from the National Institutes of Health:

Home Hemodialysis - National Kidney and Urologic Diseases Information Clearinghouse

[NDXUFan]

You are correct, home hemo is much cheaper than center dialysis. I did not know that NxStage had a partner program, I will have to ask them about that one. :)