Dialysis, HIV and terminal Pts. Abuse?

[Scarlette Wings]

i am having extremely mixed emotions about dialysis use/abuse, especially with the increase in the numbers of elderly and substance abuse hiv patients going on dialysis. i always worry how sterilized the dialysis equipment is when they dialyze someone with hepatitis, mrsa, or some other infection... so hiv patients have only made me worry more.

most of the new dialysis patients that i have seen coming in over the last 2-3 years are basically in the latter stages of one disease process or another, are elderly, have hiv, or are substance abusers still abusing and boasting about it. :hdvwl:

examples.

1. patient "x" is an 68 year old from the nursing home and has come in and out of hospital with multiple issues. pt "x" exists on peg tube feeds and has a history of multiple strokes. they are diabetic and hypertensive pt "x" is unable to follow simple instructions, is non-verbal, and unable to recognize or interact with caretakers or family. pt. is a total care patient and has been since they went into the nursing home 12 years ago. pt. "x" now comes in with a decubitus infection and dehydration, bun and creatinine through the roof and doctor "z" begins dialysis. pt. "x" discharged back to nursing home and with an outpatient dialysis clinic they will now be transported to 3 times a week.

2. pt. "y" comes into the er at 2 am. this is their third admission from the er for the same reason in the same month . the patient refused to go to their scheduled treatment and was too drunk, with their own mouth. urine tested positive for cocaine, opiates, and meth.

:devil:i really have issues with the deliberately non-compliant dialysis patient who tell you "i don't care."

3. pt. "z" is relatively young 53 year old who comes to the icu with a massive heart attack and survives. they are however now ventilator dependant with a trach, suffered massive brain cell death due to coding on arrival, requires tube feeds for nutrition, and dialysis for the renal failure that also occurred. they are basically stable so a nursing home is found that will take vent dependant patients and can get them to and from dialysis with a portable vent.

i don't know whatever happened to death with dignity or doctors knowing when to draw the line and say "enough is enough. what you have is terminal." i just think somehow that dialysis was once a medical miracle and is now an abuse. does anyone else feel this way ?

[jbluehorseh]

wow, okay, um, as a human being, i am offended by your attitude about this.

i agree, in theory, that medical advancements have progressed to the point that we sometimes prolong life at the expense of quality of life. it's something medical and ethical communities could debate ad nauseum. but when it comes to an individual, a real live person, i don't think you or anyone else needs to be deciding where that line is for them.

in any of the cases you described, the person or their poa has the right to choose continued treatment. i certainly wouldn't want my dr telling me too bad, you're going to die anyway, i refuse to do any more for you. it's one thing when they say we've run out of options, it's another to withhold available treatment just so you will go on and die already.

i have to ask what is your medical background. how many patient have you treated who have had terminal illness. how many patients have you treated who stated they want to die only to have their wished disregarded. this is not said to demean your opinion but how do you come to this thought process

i see patients like this on a daily bases, our medical technology to keep a body a live is great. just because we have the medical technology does not mean we should use it. i believe in the quality of life with my heart and soul. at what point do we say enough is enough, how many painful procedures do we put our patient through. i seen a patient who had terminal cancer, on top of their other medical history. massive amount of pain. this patient could no longer speak. this patient stopped eating, so the put a tub in. the patient had ivs around the clock, electrolytes were always were critical. the patient had pain medication around the clock, this person was in isolation not only for chemo, but for mrsa and other infections. the patient had a catheter and was incontinent. keep in mind this person was in restraints. this person was not just in the hospital for a couple days but months. this person is not going to get better, they are not going to be home for sunday dinner, they are dying and to prolong this process is not right. it not a matter of "with holding care" it is ending suffering, death with dignity.

[jbluehorseh]

Every family has their own beliefs, religious or otherwise. Obviously they have a right to make their beloved family member a full code, but I DO completely understand some of the OP's statements and opinions.

Sometimes it is HARD to take care of a 96 year old terminal patient who is in a vegetative state, vent dependent, major wounds, Cdiff, MRSA, VRE, renal failure... you name it. The MD has attempted end of life discussion, and the family then asks "So when can we get another speech consult to see if he can eat snacks?"... I take care of many different patients with many different versions of that story full time.

It's just very very hard sometimes.

My question to you is to what end

[TDCHIM]

Cases like this are another example that Americans need to change their "death is considered a failure" attitude. The decision to resuscitate or not, including measures to prolong life, need to be made by educated medical personnel who will base their decision on medical rational, not emotional rational by the pt. or family.

Well, I agree with your contention that we as a nation need to re-evaluate our perspective towards death and palliative care. Even physicians are sometimes prone towards viewing those who choose palliative care over active treatment that has little to virtually no chance of success as "quitters." However, I disagree that the final decisions should be taken from the hands of patients and family and placed in the hands of medical personnel. I believe better education and counseling on the purpose and options available through palliative care would be a better route to take. However, that would take money away from the shiny new machines and thrilling new treatment options and put it towards additional personnel who can spend extensive amounts of time working with patients and families in such situations, so I'm not exactly holding my breath till we shift our resources accordingly.

[leslie :-D]

However, I disagree that the final decisions should be taken from the hands of patients and family and placed in the hands of medical personnel. I believe better education and counseling on the purpose and options available through palliative care would be a better route to take.

i do believe the pt should be able to decide.

i am not convinced the family should, however.

i've dealt with too many families who were either in denial, and/or prone to overwhelming guilt in thinking they caused their loved one's death...

and so, they continue with futile/painful txs at all costs.

sadly, i also have known too many doctors who insist on aggressive yet futile txs.

it's either an ego-driven or fear-driven motivation.

i'm not convinced education/counseling would be helpful to families, in making these type decisions.

it's a frustrating, infuriating, distressing experience for all involved...

when we do all we can to keep a terminal pt alive.

at that point, it is no longer life for the pt, but a mere existence.

a painful one at that.

but until u.s. culture starts dealing w/dying and death more realistically, nothing is going to change.

and that is the most tragic truth we face today.

leslie

[steelydanfan]

i do believe the pt should be able to decide.

i am not convinced the family should, however.

i've dealt with too many families who were either in denial, and/or prone to overwhelming guilt in thinking they caused their loved one's death...

and so, they continue with futile/painful txs at all costs.

sadly, i also have known too many doctors who insist on aggressive yet futile txs.

it's either an ego-driven or fear-driven motivation.

i'm not convinced education/counseling would be helpful to families, in making these type decisions.

it's a frustrating, infuriating, distressing experience for all involved...

when we do all we can to keep a terminal pt alive.

at that point, it is no longer life for the pt, but a mere existence.

a painful one at that.

but until u.s. culture starts dealing w/dying and death more realistically, nothing is going to change.

and that is the most tragic truth we face today.

leslie

You have verbalized the frustrations so well, this is why I left ICU. I just could not stand one more Doctor rationalizing that torturing a 90 year old with renal, cardiac and pulmonary failure was because "The family wants it". You know, there are times that the DOCTOR needs to BE a doctor and get thier butt in the room and tell these

well-meaning but clueless family members that "WE are stopping now, NO MORE TREATMENTS. The Virgin of (whatever ) is not going to deliver a miracle for you".

[steelydanfan]

You ask some very good questions, so I'll pose a few more for you. Patient has been diagnosed with TB, is put on treatment but does not continue with it. Community Health team traces the patient, gets him/her back on treatment; after a while, patient defaults again. What do we do? Do we allow patient to carry on merrily infecting unsuspecting contacts, or "arrest" him/her and confine them in a sanatorium until cured? In our "medical/nursing" eyes, they have committed a crime, but would the law agree with us?

Here's another one; HIV+ patient contracts TB, goes on treatment and defaults; already we have a situation of multi-drug resistant TB. Do we immediately confine them or are we breaching their constitutional rights?

It may seem a bit off-topic to you, but stop and think about it. SHOULD anyone have the right to decide who shall not be treated; SHOULD we have the right to enforce treatment on someone who stubbornly resists treatment?

OK! In the case of dread infectious diseases like TB there should be no argument-you report for treatment or you will be separated from the rest of the community and take your medicine until you no longer pose a danger; that makes sense. But should drug or alcohol abusers have unlimited right to expensive treatments to alleviate the consequences of their own stupidity? NO! Unless they can pay for it out of their own pockets!

The issue of people in vegetative states being put into sophisticated courses of treatment such as dialysis is to me a very sad one. Family hoping against hope for a miracle to save their loved ones. Only counseling can help in such situations, to enable families to come to terms with the fact that some conditions are irreversible.

My short answer is no. I do not agree with paying for hospital stay after hospital stay for a non-compliant alchohol or drug addicted person. I do not want my tax dollars spent on people who want to party and have no qualms about finding shelter when the bad choices they make come back on them: while small children and pregnant mothers go without basic care for "lack of funding". And please do not tell me I am simplifying the addictive patient. The current trend of coddling these people has led to the repeat admissions, drug seeking, multiple ER visits, and abusive attitudes we are ALL dealing with nowdays.

[DizzyLizzyNurse]

I shake my head at the resident in my nursing home who is 92 and totally out of it and going to the gynecologist for her annual pap. Or the resident with Huntington's disease who had to go for her colonoscopy. She's a vegetable, with a G tube, and total care. There is no cure. It's a genetic disease. She has no control over her body. It's a horrible disease. But heaven forbid she get colon cancer in a few years. So we stuff her G tube full of Golytely and she's crying (probably feeling all those cramps) and she wasn't empty enough and we had to do it several times. Because her husband said she told him she wants it. Yeah.

I hate long term G tube placement most of all.

[missjennmb]

"I am not spending my tax dollars on..." OMG ugh!!!!! I think its horrendous that we can discuss life and death using money as a reason to let people die. It truly makes me sick to my stomach. Now I am not saying that there are not situations where people should be allowed to die with dignity and as little pain as possible. I've cared for some people who should have been allowed to die long long before they finally passed. But to judge someone's right to live based on their addictions or compliance? How cold and judgemental. It saddens me to see such judgement. We can pay $23.4 MILLION dollars on a space toilet but cannot afford to care for people lives??? Drug and alcohol addiction is not like being addicted to chocolate. If you have not walked a mile in the shoes of a drug addict, there is simply no way you can possibly understand how immensely difficult it is for them to get that monkey off of their back. They need our compassion and understanding, and they are people too. HIV as well. HIV is not a death sentence like it used to be. People can live long active lives with HIV status, and they have every right to come to terms with their own deaths however they wish, even if it means they want to be a full code.

For myself, I don't ever want a doctor to decide my fate, EVER. I would not want to let my fate rest in the hands of someone who may have their own agenda and beliefs different from my own. I want to die with dignity, but if my family is not ready to let me go, and I am beyond repair, I pray that I feel no pain at that point, but I would sacrifice myself to let my husband and children come to terms with my death before letting me go. It is MY choice, and I choose to let my family decide for me, in the event a situation arises that I am unable to choose for myself. Who are you to say otherwise?

[questionsforall]

I understand what the OP is saying and I think some people are misunderstanding the post. Some people hit it right on the mark. I don't think she is talking about taking a decision away from the patient or their family. She is saying that maybe dialysis should not be offered to everyone and there comes a point were doctors should be having palliative care discussions with families and patients instead of just doing everything possible to keep them alive. Palliative care is often underused. With some patients, we should be concentrating on reducing the severity of their disease symptoms rather than working to stop, delay or reverse the progression ot the disease. We should instead be trying to improve the quality of life. Working in a MICU, I see dialysis offered far too often and quickly. If every organ has failed and now the kidneys follow, I don't think we should offer dialysis. We will at this point not cure the patient or make their lives better by offering dialysis. I think dialysis should be used as a bridge, a means to an end and just not a means for keeping people alive with no end.

Would you offer a VAD or artificial heart to everyone in heart failure who fails medical intervention? I think most people would say no. However, dialysis is the same issue. A VAD is

an artificial machine that acts like the failed ventricle. Dialysis is an artificial machine that acts like a failed nephron. So, they are both artificial means of keeping people alive.

The US uses dialysis more than an other country. I think this is partially because it is paid for through Medicare. It is also in part because of our health care system being driven by the consumer. But, I think it is mostly due to the beliefs and cultures in the US. We as a culture will take life regardless of quality over life dependent on quality.

[GHGoonette, BSN, RN]

Missj, this is a debate which comes up in any discussion on Nursing Ethics; given an inexhaustible supply of tax funds-which health care providers would love to have, but which we all know is a pipe dream-then sure, no problem, plenty of resources=care for everyone, regardless of their bad habits. But the sad fact is, resources are limited, so it becomes a question of, "who do we give priority to?" We can not put an unreformed alcoholic on the list for a liver transplant, now can we? You don't advocate that, do you? And if patients go into kidney failure from indulging their yen for dangerous and illegal substances, would you force non-abusers to stand in line so you can treat addicts first?

I don't know how American medical insurances work, but in South Africa, many medical aids, except the most expensive plans, will not cover treatments for diseases arising out of alcohol or drug abuse-they are regarded as "self-inflicted", and many will not pay for rehab either (which I think is too harsh). I don't know if the news reports concerning our former (now late) Minister of Health ever reached America, but in 2007 she was admitted to a private hospital for a liver transplant. It caused a hell of a stink here, because she was well known to be a heavy drinker, and in fact ordered herself a bottle of red wine while she was still recovering! She died last December, from "complications relating to the transplant"... Think it was right, or fair, to allocate an organ to someone who simply was not going to look after it?

As for HIV, I fully support free ARV programs, but I have little patience with defaulters. Where TB is concerned, I have no patience. At least be responsible enough to continue with your treatments, other peoples' lives are at risk!

When it comes to extending the lives of loved ones, when they are unable to decide for themselves, I would hope that families' decisions are made in the light of wisdom and humaneness. I think it happens too often that relatives insist on interventions that are not only going to be unsuccessful but are going to cause considerable pain, suffering and loss of dignity to their beloved mothers/spouses etc. Sometimes it is better to let go.

[missjennmb]

There is a difference between dialysis and transplants. If there were people standing in line waiting for dialysis and unable to get it because of abusers, it obviously makes sense to have a criteria of the perosn who most likely gets the benefit of it, but to be honest, there are times when the transplant issue really breaks my heart as well...and I wish we had enough to go around so even those who you dont feel "deserves it" would have that opportunity. A very beautiful and sweet patient that I grew to know very well at our clinic died a few weeks ago because she did not get a transplant before her body shut down. She had a history of alcohol abuse, but that didnt stop me from crying at her loss, and wishing there were a way we could have saved her, feeling the world were less for her not being in it.

Perhaps seeing drug addicts, HIV patients, alcoholics, and psychiatrically challenged patients every day, the same ones repeatedly, and watching them struggle with those, growing to love many of them in my own way, makes it hard for me to understand the idea that they are an acceptable loss. They are people, they live, breathe, love and smile just like everyone else, and they have every right to it.

Back to the original issue though... if dialysis is not a way to 'bridge' towards better health, if it will just prolong the inevitable, maybe that should be ok too. More time to say good bye is still more time. I dont even Kevorkian would deny a patient that, if that was their choice...

[GHGoonette, BSN, RN]

There is a difference between dialysis and transplants. If there were people standing in line waiting for dialysis and unable to get it because of abusers, it obviously makes sense to have a criteria of the perosn who most likely gets the benefit of it, but to be honest, there are times when the transplant issue really breaks my heart as well...and I wish we had enough to go around so even those who you dont feel "deserves it" would have that opportunity. A very beautiful and sweet patient that I grew to know very well at our clinic died a few weeks ago because she did not get a transplant before her body shut down. She had a history of alcohol abuse, but that didnt stop me from crying at her loss, and wishing there were a way we could have saved her, feeling the world were less for her not being in it.

Perhaps seeing drug addicts, HIV patients, alcoholics, and psychiatrically challenged patients every day, the same ones repeatedly, and watching them struggle with those, growing to love many of them in my own way, makes it hard for me to understand the idea that they are an acceptable loss. They are people, they live, breathe, love and smile just like everyone else, and they have every right to it.

Back to the original issue though... if dialysis is not a way to 'bridge' towards better health, if it will just prolong the inevitable, maybe that should be ok too. More time to say good bye is still more time. I dont even Kevorkian would deny a patient that, if that was their choice...

You are a good, caring nurse, and I respect you for it. If there was a way to force the powers that be to stop misallocating/misappropriating/mismanaging the obscene amounts of money that would be better utilized in essential services, we probably would be able to treat everyone, regardless of their background. Sadly, until nurses take over the world, that is not going to happen, and we are forced to prioritize, and we can't allow ourselves to trip over our emotions.

"Each man's death diminishes me, for I am a part of Mankind". That line came up in my mind when I read your post, and it is a wonderful principle to live by; however, do not allow yourself to be diminished-you need to be a whole person in order to care for your remaining patients, and in fact to be able to function at all! :redbeathe