Help for elderly mom-wants dialysis but kicked out due to behavior

I don’t know who to turn to for help in this situation. My always hard headed mom who is now 81 has been on dialysis for about a year. She has been at assisted living most of that time and was going out 3 days a week to dialysis. She has some dementia in the families opinion, not being able to know where she is when moved to hospital or nursing home, or why she is there (although the phych who came into hospital to see her once, said no dementia). Remembers my dad but doesn’t remember she was actually married to him for 30 years (now divorced). But some things are fine, knows me, my sisters, loves my kids, begs me to bring them because she misses them etc.
Anyway, I believe the start of her bad behavior in dialysis was from pain in her leg caused by a hip repair that has failed. So off and on pain. It turned into her moaning and begging them to stop dialysis. Finally the Dr said they had to figure out why she was in pain because they couldn’t tolerate her moaning and behavior there anymore. Went to hospital… no apparent reason for pain. Some days my mom doesn’t even remember acting like that. So the DR refused to have her there anymore. I had to move her from assited living to a nursing home that had dialysis on site, per that DR. Of course he never told the new place how she behaves, so first day of dialysis there, she starts her bad behavior after I guess a hour or two. They freak out and call me and I explain. Since then they decided to give her Ativan before dialysis to calm her but doesn’t really help. A few weeks ago I get a call from the nephrologist on duty during her dialysis that my mom wants to quit, go to hospice and as POA I needed to make some decisions “people don’t live forever”. I said I would talk to her when she was clear because she tells me she wants to go. So when my mom is not in dialysis, we ask her if she wants to continue. She says well I have to. I say “you don’t have to”. She says “yes but if I dont, I’ll die, so I have to.”
Am I supposed to tell her she isn’t allowed to go? I know she acts up there… I don’t know what causes it. I have heard her moaning and saying help me on the phone when they call me from there. They say she pulls off her blood pressure cuff. My mom has hinted that she can “get out of dialysis early”. So not sure if this is just a way to not be there so long. When I ask her later, she says its not painful. But she leaves, seems happy and “normal” and goes along the next time she is scheduled.
Now she is stuck in a horrible nursing home that has on-site dialysis, she hates it there. I would like to move her, but how can I send her to another dialysis place and have her behave this way? I don’t know what to do. Please offer some advice… sorry for long story. Believe it or not this is the short version. Thanks.

I hope Dr. Agar will jump in here and offer suggestions from the medical perspective.

As a social worker, I read what you wrote and I think that one of the big things that needs to be done is to try to do a better job of managing your mother’s pain. Is she dialyzing in a bed or chair? If she’s sitting in the dialysis chair during dialysis, it’s possible sitting on her bad hip could be contributing to her pain causing her to moan and to ask off dialysis early. Can a physical therapist suggest anything to help cushion her hip? Could she dialyze in a bed? What is being done to manage her pain?

I’m not sure Ativan is the best drug for her problem, but I’ll leave that discussion to Dr. Agar. People over 65 and those with kidney problems may need to take less Ativan than others. You can read about Lorazepam (Ativan), it’s uses and side effects here:

So far as her cognitive state is concerned, has she been evaluated by a neuropsychologist or geriatric physician determine what her diagnosis is, what the future might hold for her, whether there are medications that can reduce any of her current symptoms or slow any progression, what can she control and what is unlikely for her to control, and is she competent to make decisions about her care. That doctor could offer suggestions to the staff about how to get the most out of the cognitive ability that she has and to understand what she can and can’t control so hopefully they would become less frustrated and angry with her.

If the problems the nursing home staff have with her happen only on dialysis, would she do better on a different type of treatment (like peritoneal dialysis overnight while sleeping)? If that’s not possible, would it help if someone stayed with her during dialysis. I’ve worked in clinics where patients moaned and said “help me” throughout the treatment and it is disturbing to staff and other patients. Sometimes having a family member or sitter stay with the dialysis patient during dialysis when they are reacting to dialysis like your mother works really well because it offers socialization, companionship, and distraction from the pain and boredom. Although dialysis clinics may limit visitors, some choose to allow them in cases like this.

It sounds like you have her power of attorney for healthcare decisions and you do talk with her about whether she wants to continue or stop. It sounds like she is not ready to die. Why does she say she wants to live? Is her quality of life much better when she’s off dialysis or is she in pain all the time? How bad is her pain on a 10 point scale (0=none; 10=excruciating) at different times on and off dialysis? What is keeping her going in spite of being in such bad pain? Is she choosing to do dialysis for herself or for her family? Is she afraid of dying or how she would die? Is she choosing to do dialysis because she believes stopping dialysis would be suicide and a sin? (Most organized religions say it’s not.) Here’s a booklet from the National Kidney Foundation on what to expect if considering stopping dialysis:

Finally, it sounds like your mother has enough wits about her to figure out that if she begs to get off and moans enough, staff will take her off dialysis early. Unfortunately, this is risky to her health and may be costly to the clinic. Next year clinics will have their Medicare reimbursement cut if they have lower “diaysis adequacy” numbers than average. This may make clinics want to get rid of patients who might cause their numbers to drop. If you’re in the U.S., you may want to talk with your ESRD Network about your concerns. They deal with situations where patients are at risk of being involuntarily discharged from a clinic. (scroll down to see the map and click on your state to get contact info)

I am sorry to have been late in responding to your post – I have been away for a couple of days – and I see that, really, Beth has already said much of what can be said.

It is clear that your mum is having a really difficult time – as are you and all who are around her. It is situations just like this where we, as doctors, need to take a central and advising role. It is always a difficult thing to do – to step in to help actively guide and care for any patient and his or her family – but it is just as important, if not more so, to be there for our patients, to be prepared to heal and care (though in a rather different sense and with a likely different outcome to that healing and caring) when things are going badly, when your patient is in pain, or confused, or is showing uncertainty about the choices between living or withdrawing.

Luckily, most of us now have access to specialized palliative services – highly skilled and trained doctors, nurses, social workers and other support staff who are understand the best options in pain relief pain – clearly the key first step with your mum.

Palliative care teams have long (and, I think, wrongly) been associated in the minds of most with end-of-life cancer care … but I believe that this restrictive role and association seriously under-values and under-utilizes their skills.

We are learning to work far more closely with our palliative team – purposefully referring early, and not just in the final hours or days of life - as has been usual practice. They are really good at teasing out the common nexus between pain and anxiety, between the fear of death and the fear of living. Death is frightening to many (most) of us … yet, just as frightening is life - especially in the presence of continued pain and what sometimes seem like pointless interventions. Recognizing the unique value of palliative care in pain management and counseling, we now try to involve them - explaining, too, the altered perception of their skills - when we still expect a reasonable life-time and some quality of life remains.

It is important at this point that your mum’s nephrology team work with you, as her power of attorney, to jointly manage her problems. It is so important that we do not just turn away (and we have all done that) and ‘neglect’, just at the time we are actually needed most. And, as said, if palliative care is available, perhaps both she and you - and her nephrology team - may benefit from their input too.

I agree with Beth’s comments re assessing the comfort of her dialysis chair (or bed), of allowing someone familiar to have easy and free access to her during dialysis (and I was surprised by her comment that some dialysis units do not allow this … why on earth not?). Most importantly, she must be provided with adequate pain relief - and with agents that do not accumulate or cloud. The use of the wrong mix may only add to a patients’ confusion and be counter-productive.

Each patient needs unique and personalized management – so it isn’t wise or right for me to second-guess the best medicines to use in any one specific patients’ case – especially a patient I know nothing of … so I won’t go down that course. However, given your description of her case and seeking better pain control with less sedative effects, other medicines might be worth considering.

I would push hard for a family meeting with your medical team. This needs to be a frank discussion with and not independent of your mum – where her outcomes can be gently examined and her options better understood by all. It is always a hard thing to do … but I find it to be oh so worth the effort - for all concerned. If a palliative team is available, I would press for their involvement too, both at the family meeting and in the subsequent management – remembering my view that palliation is not and should not be a step undertaken only in the setting of an impending death but is of vast value and under-used potential when used far earlier in declining health … particularly when pain is a key component.

At the end of the day, while your mum may be slowly failing … and I think that you understand that she is … it is vital that her remaining time, whether long or short, is as pain and clouded-free as possible, so that she can join in, as best she can, with the decisions you, as her POA, may need to make with her or on her behalf.