Claude's cardiologist now wants him to have a pacemaker installed as his latest echocardiogram shows some changes from 18 months ago. It will require an overnight stay in the hospital which will be extremely difficult. This same cardio wanted him to have quad bypass three years ago and no cardio surgeon would touch him because of his other health conditions.
A few months ago, his PCP (his PCP is now the hospice doctor) wanted to refer him to a kidney specialist for a bunch of tests because his creatine level was off.
After much soul searching with my kids, we have said no to all further tests. He is well into stage 6 and declining. All we want is for him to be comfortable in the time he has left and feel that putting him thru more tests and procedures is counterproductive.
Are we doing the right thing by not having these things done? Have any of you gone thru this?
This is not a strange topic, but an uncomfortable topic to be sure. I think about this issue daily. My DW is 57, but seems to be trapped in the body of an 80 year old. She is now early stage 6.
Can I ask how old is your DH? You stated that a quad-bypass was advised three years ago? Did they end up doing stents?
Did his PCP agree with your decision regarding the kidney tests? You'd think a hospice doctor would be more receptive to the "enough is enough" decision reached by your family.
Why do you want to do the test? How would the results affect the type of care or treatment that you would recommend?
The second question is:
What happens if we refuse treatment? How would that affect his quality of life?
Unless the test is designed to tell you that there's a simple intervention (treatment) that would prevent a really nasty illness or symptom from developing, something that would make your husband miserable (in pain, horribly nauseated, further debilitated by stroke, etc), then I fail to see the point.
If the test or treatment would make your husband more comfortable, then I'm all for it.
Often, doctors recommend tests and treatments for AD patients just because that's what they do with any patient, especially younger, healthy patients with a good quality of life now and the promise of a good quality of life after treatment. It is up to us to find out whether they're appropriate for our ADLOs at the ADLO's specific point in the disease and with all their other medical history taken into account.
I was going to mention the infamous QALY (quality-adjusted life year) statistic. As expensive as health care has become, and the fact that the medical establishment has very little (really no) financial motivation NOT to order tests (Hippocratic oath and all that), we are going to hear a lot about this statistic in the years ahead. A lot of the medical care that we receive 20 years from now will be based on QALY numbers - unless you want to foot the entire bill yourself. I'm not sure if there has been any specific statistical work done on QALY for dementia patients.
If your PCP offered your LO with dementia a "magic pill" that would guarantee living until the age of 90, would you let them take it? The pill would guarantee excellent physical health but no change in the progression of the dementia. (And yes, I know that the dementia causes the physical failings that lead to death - ignore that and play with me on this one.)
Iggy, Claude will be 87 in March. The cardio wanted the bypass when the stents he put in the year before failed. He ended up replacing the two stents and also put in a third one. They used radiation on all three and so far they have held.
His first PCP grudgingly went along with our decision not to have further tests, altho he tried his darndest to talk me out of it.
His new PCP (Hospice) agreed with our decision about the pacemaker.
Sunshyne, I agree with you that doctors recommend treatments because that's what they do. The cardio was just being a cardiologist and that is what he recommends for that type of problem. Same thing with any other physician.
All things considered I think you and your family made a wise decision. DH and I were talking about tests a few years ago after his diagnosis and he at that time said "really, what is the use"? He is past that stage now and doesn't question Doctor apointments, tests, etc. I think he can no longer process his condition and health concerns, and when he could make decisions, questioned why??? Now he just is agreeable because that is all he do.
If I told him he needed a Pacemaker put in, he would be agreeable.
Thanks for your reply. These are difficult decisions for any family, but made all-the-more difficult by adding the dementia wild-card. My wife is facing knee replacement and cataract surgery in the next year - I would never deny any treatment/care that would make things easier and more pleasant for her.
DH Spine surgeon recommended surgery for his spinal stenosis, after we tried PT, Pain shots with little or no help to the condition. PCP and Neuro said no. Spine surgeon said he would see him again when he was unable to walk...And that ended that...When he becomes unable to walk we will have to reconsider what we can do...If he can't walk I cannot take care of him at home....
This would be major surgery and even the surgeon said it would be questionable but he evidentally would do it if we wanted. I know it would require a lot on anestesology and physical therapy afterward.
My Mother had a broken hip and a pin installed 2 years before she died and her last 2 years were absolutely terrible with confusion, quality of life, etc. She had several hospitalizations afterward and each time she became almost unmanagable to keep in bed, just everything went downhill from the time she was admitted to the Hospital. I do not want to go through all that again. But, right now he can walk, bent over from the waist, a short distance, but when he gets to the point he cannot I think we will reconsider the surgery issue as quality of life.
redbud: Enough is enough when YOU say it's enough. My otherwise healthy non-AD sister had a pacemaker for good reason and it worked for several years. Then, when she was 90 & her body was shutting down with age, the pacemaker kept her alive for some time when she would have otherwise left us. Her quality of life was zero, many unpleasant things were happening to her, but that damn pacemaker kept ticking away, I wanted to be able to reach in & disconnect it! Hospice, pallitive care, should protect AD people from often frightening, painful useless procedures. I believe that the procedures that save the rest of us are too often harmful to the AD patient as the body is shutting down. An 87 y.o. in stage 6 AD & declining needs our human presence around him to maintain his dignity, allay fears and reassure him that he is important and always loved. Let his time here be in peace, he deserves no less.
Bettyhere. you described my 93 year old Mother perfectly. She had a pacemaker also for several years but after the rest of the body started declining the pacemaker kept her alive after her quality of life was zero. I read someplace where you could put a clause in your Living Will for the pacemaker to be turned off when quality of life became zero. The problem may be getting someone to do it without fearing reprocussions.
My kids kept saying "can't we have the pacemaker turned off?" The Hospice Nurse said when the oxygen level in the blood got down to a certain point the pacemaker would stop on its own.
Re knee replacement surgery. It is THE surgery that DH has wanted for the past few years. After the shoulder surgery that had to be done prior to knee surgery DH was noncompliant, confused, and had some bowel and bladder issues. The latter two resolved, but the confusion persisted. Then the eventual diagnosis of AD.
At this time all three of his docs, the PCP, Neuro, and Ortho surgeon are unanimous that DH would NOT likely be able to complete rehab, or comply with safety issues. They also all agree that surgery would cause a severe nosedive re the AD. DH is already stage 6. All three docs agree that cortisone shots and pain meds are the best treatment for DH. Yes, sadly he still hurts, but if he had the surgery I bet he'd still hurt............only he wouldn't be getting up and walking. It would be a disaster.....IN OUR CASE!!!!
How old is your DH? Was a nerve block discussed? I'm worried about rehab and her very low pain tolerance. We've had a cortisone shot (no help) and are now discussing a SynVisc injection. My wife had a triple CABG in 2004 which resulted in her severe nosedive.
I think our case is the same as yours. Just taking my DH off the Aricept and Namenda prior to the surgery would be a disaster. Tough calls we all have to make. My Mother's dementia did not start until she had the hip surgery at age 91. It started at the Hospital.
Paul is 72. We asked about the synvisc. The ortho doc said he didn't feel it had proven itself better than cortisone and felt one cortisone injection was better than the series of 3 synvisc citing the risk of infection. Synvisc is said to work best if the knee joint isn't too far gone and still has some cartilage left to pad. DH is strictly bone on bone. A nerve block was never mentioned.
iggy-I can only tell you how things went for my husband. I spoke to anesthesia pre-op about not using general. Light sedation and nerve block worked. First day after surgery there goes Bill-out of bed without assistance, full weight bearing and combative to beat the band. He fought with rehab and was totally non compliant with safety issues. His knee is stable and seems to cause no pain. He has no idea he had surgery. Was it worth it-I'll never know
I do run into patients who have had severe complications (staph infections resulting in a re-operation) from their knee replacement. I don't think my wife could bounce back from something like that. Too much downside at this point.
lmohr, have you looked into acupuncture? I've had a neurosurgeon recommend that I should try that, before agreeing to surgery, if I start to have unbearable pain. I have herniated discs that bulge into the spinal column in my upper back, pressing directly on the spinal column, flattening it and torquing it off to one side. I sort of picture spinal stenosis to be similar, in what it does to the spinal cord.
Iggy, the down side to surgery for spinal stenosis is the very high possibility that the surgery would damage the spinal cord and paralyze the patient from the site of the surgery on down. Same for my problem.
Re your post to me ... if I understand you correctly, you're talking about numbers that the insurance companies generate. That offends me to the core (not what you wrote, but what they are trying to do). My husband is not a statistic, and no number should be used to determine what care is best for him. Each person is an individual, not an average.
Would I opt for your little magic pill? If you're saying that the pill would force my husband to live another thirteen years of deteriorating mind, no, of course not. Quality of life includes (consists primarily of, perhaps) having a mind that can understand and appreciate that life.
He tried acupuncture year or so ago but it didn't help. It was from a Choipractor. Do you think it would be better going to another type of "Doctor"? If so, what qualities do I look for in the yellow pages?
My DH had knee replacement surgery before he was actually diagnosed with AD. Even then while he was still unaware of AD enough for the surgery, it was sheer torture the rehab and the stay in the hospital. they gave him morphine drip and it made him quite insane, he was ripping out wires, and trying to get out of bed constantly and the pain seemed incredibly tuff for him. if there are any alternatives like the cortisone injections rather than surgery it may be the better choice if the person is advanced AD. any surgery in my book would be a nightmare. i hope it doesnt come to that. divvi
I don't think it's the insurance companies that are behind the QALY numbers. QALY is being used by everyone in public health and medical research to determine if treatments are cost effective - the insurance companies are just along for the ride. I agree that it's insulting, but health care expenditures are out of control.
Thanks for answering the question. I constantly fret and stew about quality of life and extension of life issues. Very few black and whites - lots of grays.
This thread brings up alot of difficult problems. My DW had knee replacement surgery last year and she was not able to comply with the rehab unless I did everything with her. The PT in the hospital felt that she need in-oatient PT, so she was in a nursing home for ten days which drove her farther into dementia. When she got home, she was in full-blown FTD with behaviors she had never had before including wandering and oppositional behavior. Fortunately, she is back to the sweet, compliant wife I have been blessed with, but her dementia has progressed so much that the bionic knee is the least of our concerns.
I would be opposed to a pacemaker and I'm not even sure how I feel about CPR. If she had a heart attack now, she probably has a few years of happyness left, but wouldn't death spare her the indignities of the final stages? The one area that I am not sure of is whether to treat a life threatening illness. For example, what use would agressive cancer treatment be in her case? She would be miserable undergoing radiation and chemo and her quality of life would not improve. On the other hand, pneumonia is the disease that eventually takes many of our loved ones. At her stage it can easily be treated by antibiotics. I don't know what I would want in that case.
I completely understand where you are. Right now I would be opposed to a pacemaker and aggressive cancer treatment. But, if the occasion arises who knows if we will change our minds. Right now my DH is in pretty good mindset (today) and I would treat the pneumonia, but if he had progressed to the point of incontinance, violence, anxiety not knowing family and not expected to be able to be back to the stage he is in now, I would vote to do palative care. I am sure if he were taken off his AD meds he would be in the palative care only. Past recent history has indicated the ad meds are still working for him.
i would treat pneumonia unless DH was already with hospice, then i am sure they would make recommendations -once hospice is brought in then i would think the decline is going to preceed at a faster pace so it would warrant careful thought whether to treat at that point or not and how it would affect the quality of life left. divvi
We were at my husband's neuro this morning he was asking if my husband was taking aspirin for cardiac care. I said no should I start him and he said "why". The neuro doesn't believe in treating every little thing or even taking medication to stave off something unless you are already on it. As he said, he doesn't understand doctor's who treat every little thing if someone has a terminal disease such at FTD or AD. He said he would rather have someone spend their money on enjoying the time they have while they can than spending it on medications that in his eyes are not medically necessary.
baltobob, have you seen the booklet "Hard Choices for Loving People"? It was written by a chaplain who has worked for many years with terminally ill patients and their families. You can download it for free at:
http://www.hardchoices.com/
Click on "Complete Text (PDF)"
I found it very helpful in deciding what I wanted in my own Advance Healthcare Directive.
My husband is stage 6 on Hospice and we still treat lung congenstion with antibiotics as a comfort measure. Next time I don't know what I will do. Take each day at a time. Death is a very final thing.
My FIL had advanced AD. He also had prostate cancer. DH was his guardian at that time and he said no heroic measures. No surgery. No treatment. He wanted him comfortable. I think it was a good decision considering the stage of his AD.
Now my DH has AD (probably stage 5) and I hope I never have to make that choice. My heart goes out to those folks who do have to make it.
I'm bringing this to the top. A friend mentioned that she was going to go to her hometown to be with her mother while her father, who has dementia, has an operation. I said uh huh and kept going with our conversation and later it hit me - wait a minute. This is a man in his eighties having something which is apparently a scheduled (not emergency) operation. I have a call in to her but before she calls back: I seem to remember that there's some kind of anesthesia that isn't as dangerous as another. Can anyone remember what it is?
Has anyone had GOOD luck with someone with dementia having general anesthesia??
General anesthesia is generally not a good idea for someone with dementia. If possilbe, a spinal block, in which the feeling in the lower part of the body is completely blocked is a better alternative. Please check these blogs for more information:
I definitely agree about the general anesthesia. Claude had to have general anesthesia when he had the stents replaced in 2004. He started rapidly downhill from then. Prior to that, he could stay alone for short periods of time so I could go to the grocery store, volunteer at church one morning a week, etc. After that, he required 24/7 care.