Can I ask the doctor to back off?

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Can I ask the doctor to back off?

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A couple months ago my husband decided to let his meds expire and not see the doctor anymore to get renewals. He was simply tired of his (lack of) quality of life; mobility issues, incontinence issues forcing him to stay home. The wellness coach at Cigna got wind of this and talked him into going to his Medicare wellness exam and encouraged him to renew his meds. Basically the doctor took one look at him and said "I want you in the hospital for overnight observation because I believe you're in heart failure" based on his extreme edema in both legs and feet. They were successful in getting most of the fluid off during his overnight stay and he was told to take the Lasix (which he had quit taking on his own because it makes him pee too much). We had a follow-up visit with the doctor several days after hospital and he said he wanted to have an echo done which we did. We had a follow-up to that this past week (in a rainstorm) wherein the doctor told my husband that he had moderate aortic stenosis and said if/when it gets worse my husband can go (90 miles away) and have a valve replacement. (He also doubled the amount of Lasix!) My husband also has moderate kidney disease. My husband is 86 and as I mentioned, has mobility issues. He uses crutches to get out to the truck and it is almost impossible for him to lift his legs high enough to get in (he has virtually no feeling in his legs due to neuropathy which is why he gave up his drivers license). Each and every trip out of the house is a potential fall waiting to happen. But yet the doctor wants to see him AGAIN in 4 weeks. In addition to all of this I believe my husband has at LEAST a mild cognitive impairment due to his online activity with strange women (see my bio if interested) and we have no long term care insurance, any outside help, no kids to help, etc. etc. I am the sole caregiver and I've been doing it, without a vacation, for nearly 7 years. Neither my husband nor I (age 68) has a good quality of life. I'm on Bupropion, I meditate and exercise daily to keep my stress in check but it doesn't always help. I have an issue with my left arm that I'm thinking of seeing that same doctor for and during the exam voice my opinion about prolonging a person's life when there is so little life to prolong. And yet I feel like that would be stepping over the line. I know it sounds harsh but I was actually hoping my husband WAS going to succumb to heart failure. I am tired and I would like to travel and do some fun things before I'm too old to do them. (There! I said it!)

Burnout Care Decisions Congestive Heart Failure Medical Care

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Hugs to you. It sounds like you are hearing your husbands wishes. Yes it is ok stop tests and treatments your husband does not want. I had my grandparents here their last years. Hospice was a great recourse a very long time before my grand parents were actually "in" hospice. See if you can get an evaluation for your husband and ask their advice on how ween away the un-needed appointments etc. For us hospice was waiting in the wings with everything set up. We had a visiting nurse come, no charge, as grandpa had a cath. He also had an aide for personal care, she could clean the bedroom and bath- a huge help for me. It sounds like your husband qualifies for in home services from Medicare.

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Yes you can. The doctor wants to make you feel like you can’t but you have to hang tuff. My husband has Dementia and he took a lot of pills. He told me he didn’t want to take them any more so we chose to take away all the medications that would prolong life. We went to his heart doctor because we wanted to take them away safely. At first the nurses tried to make me feel like it was a mistake but I shut them down. They acted like I was trying to kill my husband. When the doctor came in He said he knew I was there to discontinue Jim’s meds. When he knew the decision had been made he agreed with me except for one stipulation. He wanted me to keep him on a medication that would not extend life but would help him. I agreed, knowing when I got home I would see if he had been honest. When we got ready to leave the doctor told me he knew it was hard for me to do this but he admired me for it. This is the second time I have had a husband that was terminal and I always put them first over any doctor. I feel it is my duty as a wife to follow my husbands wishes. It is not easy but I am his voice and his voice gets pretty loud if the doctors try to put their wishes on me. I feel it is wrong to try to hang on to a person who has no quality of life and doesn’t want to be here. If there is one thing I have learned is the doctor always wants to be the boss, but that is not their job.

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You (or your husband) are the customer. Doctors are the business, selling "doctoring.". You can buy their product or not.

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Your husband's doctor may be working under the premise that your husband wants to continue living, and the doctor is doing what he thinks is best to prolong his life. I haven't read every word of every post, but I haven't seen a firm statement from you that you told the doctor that your husband wants no further treatment. If your doctor is under the impression that your husband desires continuing treatment, he would be open for a lawsuit if he didn't do everything possible to keep your husband alive. I would think the doctor would need a statement from your husband that he wants no more treatment. As others have said, no one can make him take meds or go to a doctor's appointment if he doesn't want to.

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I agree with many other suggestions posted, i.e. PT evaluation. However, I would like to add two more suggestions. It sounds like he would qualify for in home care. Many states now have doctors, PA's or nurse practitioners that come to the house. I think he may also qualify for bathing assistance 2 times a week.
Also, if your husband was a veteran, he may qualify for help through the VA.
If your husband no longer wants to live, then seek hospice help.
Best wishes
Best wishes

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Imho, your husband cannot he his own physician/self manage. This, too, was my FIL, who self managed his own health and sent his blood sugar up to 600.

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Start here if you haven't already to help guide the discussion with your husband about what he wants.
This communicates healthcare wishes clearly to the providers. If you find it confusing, discuss it with his doctor. We had a mPOA already for my mom, but we completed my state's advanced directives when mom came to live with me and we had that signed and witnessed and uploaded to her medical record in her PCP's office.
https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/
You should also complete one for yourself.

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You are suffering from burnout big time. Caregiving 24/7/365 is a really tough job. Since you do not have help - you never get a break and that leads to burn out.

May I suggest that you get some other people to help. Try family, friends, members of community of faith, and/or paid help. You need time off to meet your own health care needs, to rest, and to nourish your own soul.

I can understand that your husband may not enjoy the lifestyle he needs to comply with in order to live. If he does not take his medications or follow his doctor's advice, it will shorten his life. If this is his desire, please make sure HE TELLS his doctor this. His doctor can make a referral to hospice if your husband is deemed terminal. Then, most insurance companies will pay for home health and nurse visits to keep him comfortable until he passes.

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What does your husband say - if he has no desire to continue a poor quality life and would rather not be here then simply stop seeing the Dr and refuse appointments. Yes this will shorten his life, but only he can make the decision on whether this is what he wants. Then you have to decide if his wishes come above yours if you disagree, but this should be an internal relationship discussion and a decision made that does not involve outsiders. We all have the right to choose what we want and to have that recognised.

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PP, you sound so tired. And disheartened. Lashing out physically at your husband is definitely a sign of burnout. And your marriage ( him dating with online "honies"?) doesn't sound like it's in good shape.

Cruthces? Shouldn't he be using a walker or wheelchair? PT eval is needed.

I think you and husband need to explore the idea of hospice.

I think you need to see YOUR doctor to discuss your mental and physical health.

I think you need to see an eldercare attorney to figure out how to afford facility care for husband.

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Competent patients have the right to refuse treatment. Remember that. No doctor can "make" you do anything unless it were court ordered.

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Another reason that you wishes should be voiced to all family members as well as your doctor AND a POLST or other equivalent document should be completed and a copy kept on you at all times.

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Questions:

1) is this doctor his PCP or a cardiologist (sounds more like a PCP)?
2) does husband have dementia (if yes, sounds minimal for now)?
3) has anyone asked him what HE wants to do?

My dad had valve replacement done twice. In general it is good for about 10 years. His lasted 20 and he requested the pig's brother for the second surgery! The first one also included repairing an aneurysm on the aorta. The first surgery went well - he was probably mid 50s at that point and all was good. The second one wasn't as good - certainly the valve seemed to work okay, but from what I heard, they "lost" him for a bit when transitioning off the heart-lung machine. He was still younger than your husband, but in general much healthier. No high BP, no compromised kidneys, still quite mobile, etc. My mother tried to claim they gave him Alz, but he was having memory issues before that surgery. The anesthesia would likely have made it worse, esp given his age. He also couldn't take the meds they Rxed, for life. Bad reactions and cut until they had him on baby aspirin. He did have to take other heart meds later.

Anyway, a lot may depend on what your husband wishes to do AND what a cardio surgeon would do. There are doctors who will look at the whole picture and say nope. They don't want or need to lose patients - if they don't think a patient will do well in surgery, they may not agree to do it. These docs like to keep their "numbers" up. Of course there are doctors who will do it anyway.

This isn't a short fix and in many cases will require being on a heart-lung machine. With all his other issues, the complications of surgery and post surgery need to be considered carefully!

"Recovering from valve surgery usually takes most people between 4 and 8 weeks. If you had minimally invasive surgery, you may recover even sooner. Before you leave hospital, you'll be given detailed instructions for exercise, medications, ongoing wound care and resuming normal activities."
Source: https://www.svhhearthealth.com.au

"Possible risks of heart valve repair or replacement surgery include: Bleeding during or after the surgery. Blood clots that can cause heart attack, stroke, or lung problems. Infection."
Source: https://www.hopkinsmedicine.org

I recall my dad had to take a lot of medication and if he had dental cleaning/work, he had to take antibiotic before.

If this doctor isn't a cardiologist, in particular a cardio surgeon, I would highly recommend consult with one and ask ALL these questions regarding the surgery (risks, complications, etc), make sure the doctor knows about all his other issues, and what post-op will entail.

Personally, it doesn't sound like he would be a good candidate for this surgery, given his other conditions, lack of mobility, etc. But, if he gets to hear and understand all that this entails from a cardiologist AND the surgeon is confident he will do well despite his other issues, then it is his decision whether to proceed with the surgery or not.

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My wife had a tissue valve replacement (aortic and mitral) in 1976. They failed in 1980. She then had mechanical valve replacement and they are still going strong.
Of course with mechanical valves she has now ben on coumadin 41 years and now I check her INR 1 or 2 times per week.
She has multiple other medical issues but her aortic and mitral valves are going strong.

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IF your husband is of sound mind, has not been diagnosed cognitively impaired he can make whatever decision he wants to about his care.
If any of the illness that he has if left untreated would lead to his death he can ask to be placed on Hospice.
If the doctor refuses he or you can contact Hospice yourself and ask for an evaluation. After discussing Hospice with you and probably discussing the alternative, Palliative Care if you choose Hospice they will contact your/his doctor.
Some doctors just do not listen to patients, of if they are listening they do not hear what is being said.

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Does your husband accept that Congestive Heart Failure, untreated, could kill him? Is he ready to go and unhappy with living? Has he discussed palliative care for the remainder of his life and have you both attended a lawyer or written out your advanced directives being SPECIFIC about what care and medications you will or will not accept. Without any diagnosis of dementia your husband is in charge of what he wishes to do and whom he wishes to see and which medications he will or will not take. However, CHF means a failing heart. I am surprised a doctor would suggest value placement to an 86 year old; I would look at the statistics of survival of those over 80 having heart surgeries before agreeing to this. Be certain you understand the complications.
Lasix does, yes, cause frequency and urgency for some hour, and it does get rid of some of that excess fluid (fluid in the periphery (legs, abdomen) often means Right sided failure. If there is an inability to breathe easily or if the person needs to sit up through the night there is likely fluid in the lungs and some left heart failure also (more dire).
You do have choices. But they need to be informed choices. That means you need to educate yourself about Congestive Heart Failure, to understand the medications and other options and to make choices for yourself. You should also ask for a consult with a palliative care doctor and see if this might be a choice your husband would like until it is time for hospice. BUT be certain you understand the disease, the medications, the procedures, the consequences of action or inaction before making a decision that is truly one of life and death. I wish you the very best.I am 79. I would never at this point accept heart surgery or dialysis. I would, however, take medications, attempting to time them so that I get the "bathroom time" out of the way in the morning hours. We all come to a point where we make our own decisions; just be certain they are "informed decisions" and make certain they are fully in writing and a POA for health care understands our belief and choice, and will honor them if we are unable to make these decisions.

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Wellll...I'd say, clearly this MD is not a match for you or your husband. I'd be looking for a new MD, one who has the capacity to understand the underlying issues here. I'd also hope you can contact your local area agency on aging or city hall or some source that can lead you to available resources to help you remain as safely as possible with support in your own home. The MD's ignorance is evident in is not caring about the challenge or risk of just getting to the car for an appt. My parents MD is a pig who, while he is apparently clueless that his patient age 104 is complaining of some combination of feeling off balance/vertigo/dizziness, less than 5 days prior the same person climbed a 10ft ladder to trim tree branches! YET he sends him home with a note for ME the lowly female daughter available to look up some exercises on line to work with the patient in hopes to alleviate some of these symptoms. No matter that the daughter has health issues of her own she has made this so called MD aware of. Do not lose sight of MD's being influenced by medical systems they are affiliated with. ANd another thing....maybe your beloved is tired of the struggle, the pills things disrupting what normal life he envisions for himself. No one reaching out to work through dietary changes using foods/fruit/veggies to serve as a diuretic. Or to work on a dosage that is appropriate and timing of dose that interferes minimally with sleep....I can imagine the struggle getting up in the middle of the night with his mobility challenges...It's a team effort and if the coach/MD doesn't care...well you get the picture. AND YOU for sure are entitled to some YOU time. You don't have to feel guilty...but no doubt you won't have a good time unless a plan is in place because you'll be worried. Wishing us both all the best because I need to find a new MD for my folks as well. Current one is about 5-10 minutes away and someone better may be further. It's a tough call. Did I mention, have you checked into hospice? They may be more understanding, respectful, and resourceful. Sending hugs....

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I understand your husband ready to not seek active treatment and to lose his meds. My father went through that and he went on hospice. They took him off most of his meds. The meds they kept were meds designed to keep him comfortable so as not to suffer the discomfort from his CHF.

Talk honestly to the doctor about discontinuing active treatment and ask for a referral for hospice. Interview more than one hospice provider. The one we selected was a not-for-profit company and they took excellent care of dad and the rest of the family.

May you both be blessed with peace and grace.

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Have you considered hospice? Sounds like he would qualify for it. It’s not always a good decision to stop meds all at once suddenly. Consider contacting a hospice organization for recommendations. Even in hospice they continue certain meds until the end of life. Otherwise, more problems occur, thus making it uncomfortable for him and you.

Best wishes to both of you.

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Your husband has some serious health issues and it's his choice to treat those issues or not. However, it sounds like the exacerbated issues from not taking meds creates much more work for you than for him. You have no help. If your current income allows for in-home care, then use it for that to get away. If your income does not allow for that, he's going to end up in a nursing home anyway.

Instead of talking to the drs, you need to be talking to hubby. If his choice is to stop the meds, he is making a choice to let his life play on out and possibly lingering in a state of not being able to get around at all. You cannot manage that care alone and there's no one to step in to help. No meds?- He needs to think about a NH to live out his days. No problem with you visiting all the time, but you cannot manage his care alone and you aren't ready to give up on living. Let him decide if he wants to try things to get moving again.

After he decides - then you can talk with a doctor to see if his medical needs meet the requirements for NH care. Be very specific about all the tasks you have to handle for hubby and be sure dr understand hubby doesn't want any more meds. It's possible he would qualify for palliative care (under the umbrella of hospice) instead of curative.

If doc says yes - apply for Medicaid NH and see how it works out. They do not take all of his income to pay for NH when one spouse remains at home. That is to prevent home spouse from becoming impoverished by his move to NH.

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Well he never DID stop the meds because Cigna stepped in and told him not to and to go to the doctor to get them refilled. Unfortunately he will never "get moving" again. He's an ex-jock with bad knees, bad hips, bad back and neuropathy and I accompany him to all his doctor visits and have for probably the past 10 years, at first it was because he was not forthcoming with his doctors and I wanted to know what was going on. In recent years, it's because he needs a driver and assistance and a wheelchair when we get to where we're going. I have "investigated" the Medicaid issue but then we have the hurdle of getting him TO a NH (he had a fit when his brother went in one). I am working up to a convo with him about how we are going to handle our future....help for him, joy for me (as in getting away). I now have a foot care nurse coming in which I hoped would be a segue into home health care....he has been very reluctant for someone other than me to care for him.

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Has anyone mentioned palliative care?

https://www.agingcare.com/articles/palliative-care-what-is-it-and-how-is-it-different-from-hospice-197744.htm

https://www.agingcare.com/articles/palliative-care-how-it-can-help-your-aging-parent-achieve-quality-of-life-136281.htm

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Thank you....haven't read them yet but intend to!

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It sounds like your husband was willing to face death, but then decided to try some things to improve his situation.

You might go with him on some information-gathering medical interviews: i.e. does heart surgery for an 86 y.o. really make sense? Not sure whom best to interview, but it certainly should not be a heart surgeon.

A U.K. doctor would be best because in their system they look at quality-of-life-years to decide if a procedure makes sense. Maybe you can set up a telehealth interview with a U.K. doctor.

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Yes you may be right. I do go with him to all his health care visits and have for the past 10 years. And I agree with your comment concerning an 86 y/o and heart surgery. If the heart issue was the only issue he had it might be different but he truly has a laundry list of problems and is miserable with his circumstances.

But can you tell me what a U.K. doctor is??

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I would have questioned the increase in the Lasix because of his incontinence. I would also tell the doctor how hard it is to get DH out of the house. Ask if he has a Nurse Practitioner who can be sent around.

Valve replacement...I think they have improved the procedure since my Dad had it done 30 yrs ago. But it still means having to be put under. With all your husbands health problems should he really get this operation?

You do have options. If DH ends up in the hospital and/or rehab have him evaluated for 24/7 care. If found he needs it, then tell them you can no longer care for him. He can be placed in a Nursing facility and you will become the Community Spouse. Medicaid allows for your assets to be split. You will remain in the home and have a car. You will be given enough to live on.

You may want to see a lawyer now, well versed in Medicaid. See how you can protect your share. With your husband talking to these women, he may start sending them money. You need to protect yourself. Even if its opening up an account of your own and putting half of you joint account in it.

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When the fluid continues to build, the lasix does get increased. If fluid doesn't come out of the body it eventually builds around the heart and lungs to point you simply can't breathe. Kind of sounds like the guy gets tired of peeing all the time until the build up causes him issues like gasping for air - that's where your brain kicks in and says I want to breathe.

Talking to atty is excellent idea - now before hubby has heart failure, stroke or some other issue. And DEFINITELY I would remove his access to money. Online fraud is a huge business for those people who pretend to be looking for 'love' as their income. Disgusting.

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Sending you both a hug.

Have either of you told the doctor no more treatment, no more tests?

Have you asked for a referral to Hospice?

Can you access a social worker and explain that your husband has had enough?

Sure there are medications and procedures that will extend his life, but at what cost?

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Thank you, I agree with most of what you've said. And I definitely agree with your last sentence!

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Can I ask the doctor to back off?

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