Mother quitting dialysis

My mother (75) has suffered with surgery induced hypoparathyroidism for over twenty years and due to her uncontrollable high blood pressure and calcium deposits, finally succumbed to kidney failure in November. She is undergoing in center hemodialysis three times/week but claims to feel progressively worse after each treatment… Itching all over (phosphorus seems fine), nausea and exhaustion, weakened bones/joints perhaps from lost calcium? so that she is unable to stand for more than a few seconds… She has decided to quit and find a hospice but I am wondering if there is something wrong with her treatment plan - perhaps an allergy to the dialysate? something missing in the drip that would help with her hypoparathyroid complications? She doesn’t have diabetes or heart problems so it would seem that she should be able to tolerate dialysis better than she is… What could be the problem? Or is dialysis just not feasible for some unfortunate people…
Hoping to keep my mother alive and comfortable…

I am sorry to hear the story about your mother.

However, I find it is really hard to get a sense of how to answer your question without really knowing a whole lot more about your her and about the probable ups and downs of her course over the many years of her progressive kidney disease. I also really dont have a sense of the many possible problems that may underpin the way she feels now - especially how dialysis makes her feel. Unfortunately, that is part of the problem of a Q&A website like this … it is just impossible to answer individual patient problems without knowing the patient as an individual.

That said, some observations are possible … her medications may be important, her dialysis regimen, the effectiveness of her dialysis, and simple but important stuff - like the amount of weight she is gaining between dialysis treatments and the rate at which fluid is being removed when on dialysis … these, and more, may be contributing to some of her symptoms.

She may have underlying calcific renovascular disease (her uncontrolled blood pressures suggest this might be a possibility) and though you say she doesnt have heart problems and that may be so, it is hard for me to be sure about this without knowing more about her - much more than I could ever learn (or fairly comment) about at a website like this.

The issue of her being unable to stand may suggest postural hypotension - especially if this is maximal after dialysis - or simply that her long and painful illness has so weakened her, so de-conditioned her, that she has little muscle bulk - and strength - left.

I am afraid that I may have to fall back on the often-repeated but true response - this is one for her on-the-spot team and nephrologist. I suggest that you have a sit down with him/her and discuss these concerns openly and fully. Sometimes, the team who manages your mother may be unaware of your anxiety. Make your concerns plain to your team - not in a confrontational way but through gentle and in-depth discussion … and you may have to make a special time to do this rather than just try to catch a busy team ‘on the hop’ or on the phone.

To be truthful … sometimes there is little we can do. Though 75 would now be regarded as ‘not so very old’, she has battled her illness for 2 decades - and this simple fact often subtly adds many ‘notional’ years to our chronological age. But … before she (or you) decide to quit and seek a hospice, just make sure with her team that there is little or nothing else they think might make a difference for her. You need to be aware that the answer may come back - ‘we have done what we can … there are no more things to try’ … but your last statement/question “or is dialysis just not feasible for some unfortunate people?” is, sadly, sometimes the case.

None of us - me, and you, too - can go on for ever. We need to know and understand that. The notion that modern medicine can hold back the tide of disease for ever is, unfortunately, a flawed one.

But … sometimes the situation you describe can be remedied by simple steps - a change of medication, a change in dry weight, or better, longer, slower, more frequent dialysis if she is 'under-dialysed … and the itch she has does raise that possibility - though, clearly, it may also be due to many other things.

My best advice is to talk to your team.

They will be best able to help answer your questions.

John Agar

Thank you so much for your thoughtful reply. We (my father and I) will meet with the nephrologist tomorrow and ask about adjusting the dialysis regimen, calcific renovascular disease and postural hypotension… It is interesting that you mention calcific renovascular disease as the radiologist who saw my mother in the hospital (who performed CT scan, MRI and catheter placement) suggested that she might be helped by angioplasty. I wondered why the nephrologists never mentioned this as a possible treatment - would this have enabled her to evade dialysis? Could her kidneys be functional but her renal arteries just obstructed? I guess the angioplasty procedure carries with it some risk of embolism/stroke? and the contrast dye used to see the veins/arteries might itself destroy what little remains of her kidney function. Still, it troubles me that we may have set off on the wrong path… Not sure if we can get my mother out early into the cold Washington DC morning to endure another session of torment, I wish we had arranged nocturnal home dialysis from the start… It’s all very confusing… but thank you again for responding so quickly and with such kind understanding and useful information. It has helped tremendously…

On the question of whether (if indeed she had renal artery stenosis … and this was just a thought) that restoration of blood flow may have kept her off dialysis, the likely answer to this is (again, sadly) a ‘No’.

There is actually rather disappointing (and sobering) data on this and it is what stays the hand of many doctors from going in ‘boots and all’ in a gung-ho fashion just because a treatment is 'possible. The ‘possible’ must always be tempered by wisdom. In the case of renal artery angioplasty … and here, I underline, in association with already present advanced renal functional decline … sometimes wisdom will trump technology and say - yes, technologically it can be done but the risks and down-sides of intervention exceed the potential but unlikely benefits that may result.

One might think there would be a clear possibility of renal fuctional improvement but, commonly, bigger vessel disease (ammenable to angioplasty in the main artery) reflects smaller, non-reachable and advanced stenotic or occlusive vessel disease further into the kidney so that even treating a main trunk stenosis successfully doesnt always guarantee success or restoration of renal function. It is disappointing how infrequently renal function perks up in response to angioplasty. Blood pressure may improve, true - though even that is can be a somewhat patchy and unpredictable outcome - but function infrequently does.

An angioplasty may ocassionally also risk significant embolism to the lower limbs or, commonly, cholesterol embolisation further into the kidney itself - further compromising function. Embolic ‘filters’ can be used but both increase the complexity of the proceedure and its already significant risks. But - not stroke! … unless the catheter is passed up over the aortic arch to a point closer to the heart than the ‘take-off’ of the carotid arteries.

Contrast toxicity is the bigger worry and, if renal function is already poor, the nephrologist may (often) wisely decide that the risks - the lack of likely beneficial outcome, embolism and, especially, contrast nephropathy (toxicity to the kidneys from the ‘dye’ used for the angiogram) outweigh the potential and the probably already low-yield benefits. The use of contrast in moderate to advanced renal impairment may risk compromising or ‘destroying’ (as you said) what was left of her native kidney function and may - in this circumstance - actually precipitate the need for dialysis earlier than otherwise would have been the case.

I am glad you are going to chat all this through with the team. Be mindful, though, that there are many ‘impactors’ and ‘decision trees’ in this case, many of which may have been ‘possible’ but, what is possible is not always wise. It is ‘the wisdom’ a thoughtful doctor brings to ‘the possible’ that ultimately tends to steer the best and safest road. It is what we all try to do … and, no, it doesnt always ‘come off’ for the best … but, we do try - so always try to bear this in mind when you talk to your doctor.

Commonly … I hope always … he/she will have acted in good faith and will have applied wisdom to what was ‘possible’ - and sometimes this may mean that ‘the possible’ isnt always the best path to take.

John Agar

Thank you for responding again and I apologize for taking more of your time with yet another question… It is very helpful to hear that renal artery angioplasty would not likely have been helpful and could have actually accelerated my mother’s decline - I can put that out of my mind now, but still we are struggling here with her decision to discontinue dialysis and she is realizing that it will not be an easy time for her. Today, I convinced her to go to the center to have some fluid removed as she was swollen, having breathing difficulties and barely able to stand or sleep. She tolerated a bit less than 2 hours on the machine (I suppose they performed full dialysis) after no dialysis for five days. She says she has unbearable chest/heart pain and believes the process is taking vital elements out of her blood (she cannot regulate her calcium due to hypoparathyroidism) so that she cannot move her legs after dialysis… Is this possible? Of course she cannot deny that the fluid removal makes her more comfortable (suffocating is agonizing) but she is, I suspect, hoping to drift away peacefully in her sleep, but it is anything but peaceful to live in her body at this time… The nephrologist who was to look into a different dialysate is out with the flu and she is convinced that will not make much difference anyway but I don’t think it is a good idea to wait it out at home… What do most people do who are terminating dialysis? Can a hospice nurse actually relieve the misery of a patient with no kidney function? Actually, she still produces a little bit of urine… should she go into a nursing home? How can we tell how long she will suffer if she completely stops treatment and do some patients just have fluid removed without removing the toxins from the blood to stay more comfortable? I am sorry to ask such morbid questions but I feel we are lost…

I can sense your confusion, your desperation and your sadness …

But … unfortunately, at >12000 miles distance, and not knowing your local resources, your local or even your US-based service patterns, I am at a loss to advise what specific course you can take and whether care at home or in a high or higher level care facility – and their availability – is the most appropriate course. Only her medical team can know this.

Regarding control of her fluid status … sometimes, intermittent ultrafiltration for fluid is helpful - as she has already found out when she was overloaded and suffering from breathlessness - even if dialysis for solute removal is inefficient or ineffective. If UFR is done, then the slower this is done, generally the better.

Her post-dialysis weakness – without knowing her bloods and much, much more than I can tell from this distance – is difficult to advise you further about. Yes, it can be due to electrolyte shifts and calcium issues though my guess (and I am only guessing) is that she is on a brittle knife’s edge of fluid and volume and that the weakness may be exacerbated (made worse) when fluid is taken off and her effective cardiac output volume falls and her systemic pressure struggles.

Here, we try to give our patients a choice of admission (usually under out palliative care team and not the renal team). It is usually easier to control fluids and hence the tendency to over-fill when a patient is under direct and regular medical care in hospital – or visiting hospice/palliative care either at home or in a high-dependency care environment … read, I think, a nursing home … but here in Australia, this means giving a little more care than is usually available in a standard nursing home.

How long? … sadly, I just cant tell. You need to ask your team. I can’t even have a guess at that – and it would be wrong and unprofessional for me to try to do so in the total absence of any knowledge of your mother as a person and without intimate knowledge of her medical history and progress.

Please … see her team. Talk this through with them. Seek their advice – and their help.

John Agar

First I want to thank you again for your sensitive and helpful responses at this difficult time, I would have written sooner but we have been overwhelmed…

My mother terminated her dialysis treatments last Monday with the agreement of her nephrologist who began to see that it was making her sicker. (It seems now that peritoneal dialysis might have been the better choice as it is more gentle and disturbs the blood chemistry less?) She did not want to wait to see an endocrinologist who claimed she could help her adjust her regimen to include Forteo (synthetic parathyroid hormone) etc., because my mother has had too much experience with doctors who don’t understand the complexity of her condition and besides, she has already lost the use of her legs as a consequence of hemodialysis. (either the process itself or Epogen or the wrong form of vitamin D, heparin or some other meds in her line).

The nephrologist was very concerned and kind enough to call in a prescription for Forteo which we picked up and have been administering ourselves in the hopes it will make her more comfortable and it seems to have helped with the excruciating pain in her legs - now they don’t hurt but she still cant pivot them to move. She checked into a hospice last Tuesday but confessed to suicidal plans should she not pass quickly enough and she was evicted because the Hospice did not want to be responsible for her unless we hired a 24 hr. attendant or never left her side… She would not return home and insisted on ending her life in the car with ground up pills which she had prepared in advance… so we checked her into the hospital somewhat against her will and she has been there since Thursday and was getting decent care and stabilizing until today where the psychiatrist came with the case worker to talk to her and she, wanting to depart more quickly, concealed her intentions and now they are discharging her tomorrow.

She does not want to suffer any longer but we cannot guarantee that she will go peacefully any time soon… Her creatinine doubled from 4.7 to 8.3 in three days without dialysis at which point the hospital doctor told us she had a few more days at most as creatinine would increase exponentially and she would gradually lose consciousness. But then her creatinine only went to 8.7 by Saturday and we learned (not from anyone in the hospital) that because she has been alive for so long with extremely high blood pressure and almost no kidney function, that her body may have adapted to that condition and as she still makes a little bit of urine, she could last weeks, months? Is this true? I want to be grateful for the extra time with her but she is miserable and now quite angry with us for not assisting her with suicide… Well, besides the fact that it is illegal here in the US, I don’t want my father to have to deal with the moral dilemma and emotional trauma of allowing her to overdose… If she were no longer coherent or in constant agony, I might feel differently but maybe it is enough that she is suffering, completely dependent on others for most of her needs, and is tired of living…

How do you handle cases like this in Australia?

I have read your last entry - and it is very sad indeed to hear what has happened with your mum. It is clear - and very understandable - that you should seek help and advice from wherever you can - but it seems from what you have said that she (and you) are both now getting help from several quarters and have a caring nephrologist to try to steer you through what is a terrible time for all - your mum, your family, you and her caring team(s). No-one ever gets an easy path through this last time - even when everything is eased for her as best as it can be. I was a little saddened to hear the response of the Hospice but am unable to make comment as I come from a different system and a different country with different ways of managing, supporting patients through the last little time of life.

I wish I could be of more comfort - but now … and especially now … you need to draw on those who are there, around you. This is a time for calming, touching, gentleness and just ‘being there’ for your mum. It is never easy - but it must be ‘hands on’ and local and near and available … none of which I am nor can be.

Your nephrologist may be able to help - but here, we would have our palliative care teams and the primary care doctor - here called a general practitioner (GP) or family doctor - taking the primary role to ease your mum through as best as can be done. Anger isnt helpful. Resentment doesnt win. Being there does. Pain relief does - effective but non-disturbing and claming pain relief. As she has a little likely residual function, this may prolong matters a little but the judicious use of sedation and pain management here would help - both in time and gentleness.

Sadly, I cannot help you more, from so far away. Have your family doctor (? primary care physician ?) help you, your family and her to understand what is happening. That is the best way. Assisting her to end her life is neither legal (there or here) nor the right course. Making her dying easy with the right medication choices is. Go that course and may things go more easily for you all.

John Agar

Here I am again, I tried to register since I am visiting this site regularly, but no email link was sent… This week will probably be my mother’s last as we are finally beginning to understand what it means to die. I wish her doctors could have been honest about the real possibility that her death would be a long drawn out miserable one with dehydration/starvation finishing her off rather than the painless fading away into a deep sleep that was advertised… She was in the hospital for three weeks barely eating and drinking and pumped full of medications; anti anxiety, anti psychotic, blood pressure, thyroid and parathyroid, drugs to treat confusion all to keep her “sedate.” We found a private apartment in an assisted living facility adjacent to the hospital where she was transferred and actually thrived for almost a week eating a small amount of normal food and drinking. She could even stand up and walk a few steps. Then she began to feel nauseated and retched for three days ultimately deciding this must be the time to die finally and urged by hospice care nurses, she was transferred to inpatient hospice to treat her nausea. Once treated with halperidol, methadone, ativan and versed, she was no longer nauseated but comatose most of the day and night waking only to beg to be helped to the bedside potty rather than use a diaper. She was still producing a small amount of urine then. Last week she we arranged to transfer her back to the assisted living apartment which is much closer to my home and where my father can stay with her, get his meals and with the assistance of a hospice crisis care night nurse he can care for her and administer meds. She gradually lost the ability to speak, swallow and move but was still intermittently conscious and able to nod her head. Now she is just opening her eyes. We can only use mouth swabs and vitamin E for her lips to keep her mouth from drying out but after insertion of a urinary catheter and emptying her bladder completely, it appears she has finally stopped producing urine… which comes as no surprise since she is no longer able to swallow and I suppose the fluid she has retained has been used. Her skin is getting wrinkly now and I guess dehydration is how she will depart. It is almost six weeks since she stopped hemodialysis. What I want to know is, does she suffer since she is occasionally conscious of her state of being? Should she be on an IV or does that simply prolong her suffering? And couldn’t her nephrologists have known that having only done six weeks of dialysis and continuing to produce urine, she would not die the typical death of most ESRD patients? Or is this typical? And if so, why are more people not being honest about this death being unimaginably horrible, terrifying and cruel? Also, and this is just to rest my own conscience, I can’t stop thinking about peritoneal dialysis and why no one suggested that first and why it wasn’t even considered when it was clear that hemo was making matters worse… In retrospect, it appears we have had plenty of time to try alternatives, so I am very disturbed… Sorry to keep popping back with morbid reports, but you have been the most responsive and edifying doctor with whom I have communicated. In fact, just as I typed the last sentence, an endocrinologist from Georgetown Hospital finally called back about my mother’s complications with dialysis and an opening to see her - six weeks after she quit!

Closure or acceptance? It is hard to know if we ever reach closure after the death of a much-loved mother, father, sibling or child. Acceptance? … yes … probably. Closure? … maybe less certainly.

Your mother, your father, you, your family … all have suffered more than most in this long and drawn-out process and I feel for you all. Usually - and I mean this - it is not so drawn out as it has been in your mother’s case. But, in some patients - particularly but not only in patients where dialysis has been used early in support of, for example, a failing or sick heart - more residual (remaining) kidney function may be present than we expect. In those cases, when dialysis IS finally withdrawn, there is enough of a glimmer of remaining kidney function to last for some time - longer than we expect or predict. Unfortunately, we dont always ‘get this right’ … much as we try and we’d like to … and when that happens, the toll on the patient and family huge and the stressors hard to bear.

You may wish to read back to other posts on ‘residual renal function’ that were answered late last year to better understand this concept. When residual renal function hangs on, death may not be as close as it usually is and we can predict it to be for patients who withdraw after years of true CKD and/or dialysis. In this more usual case, the end tends to come much more quickly and, truely, much more gently that it clearly has done in your mother’s case.

Sadly, it is not always easy to predict. I wish it were. I sometimes wish we could be more definite to patients and their families than we are and can be. For those, like your mum, where the decline after dialysis withdrawal is drawn out and prolonged … no - the dying is not easy.

I can only say that I understand your pain and anguish and your distress for her and your father. In the end, though, I guess that what I am trying to say … easy though it is in the saying it but hard though it is to live through it … is, try as best not to recriminate. It will not, believe me, help you in the long run. The fact that you have shared your experiences here with others is a positive thing - for both you and for other readers. We learn … and we go on. I wish you and your family the best as you search for that acceptance, if not for that closure. You have all lived a hard dying, your mother, you and yours, and if we had our way and compassion could win the day, that would never happen. But it does - and it will again, for others. That it had to be your lot, I am sorry.

John Agar

Thank you for responding so quickly again. My mother passed away the evening of my last posting. Her heart had begun to beat more rapidly and her breaths shorter and closer together and then her eyes opened wide and she gasped repeatedly (my father’s account) and then stopped… How conscious is someone in that state of their own demise? Does it sound like a heart attack? I just want to know if that is as terrifying for the individual dying as it sounds… I am relieved that she suffers no more but I still wonder what could have been if we had first tried peritoneal dialysis…which also leads me to ask, why doesn’t everyone start with peritoneal dialysis if it is more gentle? Why does it seem that so few dialysis patients use that modality here in the US? I have been so troubled with the “what if?” that it seemed more that mere coincidence that the first link to a similar thread was posted at the bottom of the page. It chronicled the experience of another daughter whose mother had done poorly on hemodialysis and switched to CAPD and continued to suffer complications including terrible infections… I don’t know how it all ended, but it was a reminder that continued intervention might not have guaranteed a miracle recovery…

I am sorry to hear your Mum died.

No-one knows what or how much someone knows, feels, or is aware in those last few minutes and hours before death but I would like to think, and I think (and hope) that you should too, that she was beyond agony at that time and in the half-light of crossing. The agony of dying seems often more for the beholder than for the person dying, I think.

Try not to recriminate or play the ‘what if’ game over and over in your head and with your family. It wont, in the end, help or be productive. Think back to the good times you all had as a family and be thankful for those. Try not to dwell on the tough end that has, understandably, consumed you all in recent weeks.

Yes, easily said, but not so easily done … but if you can move past this, it will be for the better.

There is nothing more I can say about it that will help you.

John Agar