Pacemaker Rights

Living will

by AgentX86 - 2020-10-17 12:29:04

Ask your lawyer.  Each state has different laws. Within the law, doctors will have a difference in opinion and practice.  It's not a simple answer and really has no business here.

No replacement device ?

by Gemita - 2020-10-17 14:43:05

Hello Blondpacer,

A very difficult decision to have to make, but I will support you whatever you decide.

If I recall correctly, you do not wish to have your pacemaker replaced when the battery fades because of other incurable debilitating, painful conditions? I believe as adults, we all have a right to refuse medical treatment in the future, for whatever reason, when the time comes to make a decision.  

From your history, it seems your pacemaker is due to be replaced and that you are now facing the prospect of telling your doctors that you do not wish to have a replacement device.   If you do not consent to another device, I do not see what anyone can do, other than accept your decision.  I can see from your history that you are of sound mind and you have considered all your options and you are still of the opinion that you would be better off being left in peace, free from medical intervention, if I have got that correct?

Perhaps it would be wise to get a trusted family member or friend to accompany you to any future consultation with your cardiologist or to your general doctor, so that your wishes can be documented.  Perhaps a trusted family member or friend could be a power of attorney to act on your behalf at any time when you become less well to ensure that your wishes are honoured.

I would also suggest that you build up a good rapport with all your doctors who know you best and who can document the difficulties you are clearly having and provide you with a medical report confirming your wishes.

I do not know what would happen if you suddenly lost complete pacemaker support, what your quality of life would be and how it would affect your other organs?  Whether without support the process of leaving this world would really be so peaceful as you would wish?  This is what would worry me the most.  Have you discussed all this with your doctors, with your brothers, with your friends?  If on loss of pacemaker support you found yourself in difficulty, would you consider accepting any medical treatment at all to ease your suffering?  I really am unclear about some of this and I would certainly not want to see you in a poorer position.  

I attach a link which might be helpful to read and to listen to the full version interview from a patient in the UK who chose to have her pacemaker deactivated.  

https://www.bbc.co.uk/news/magazine-37451854

We can ask

by Gotrhythm - 2020-10-17 15:30:42

I disagree with AgentX that the question has no business here. This is the Pacemaker Club and if you can't ask about dealing with a pacemaker at death, where can you?

AgentX is correct in one way. Different states do have different laws, true, but don't expect just any old lawyer to be able to help you. This issue has many more than 50 shades of gray--partly ethical, partly legal, partly medical, 

Even where legal and ethical opinions coincide, the right medical decision isn't always obvious. There are many levels of dependence on the pacemaker, and so there are many degrees of difference turning off the pacemaker could make.

It should be mentioned here, that for hospice patients, if the patient wishes, the defibrillator part of an ICD or CRT-D can be, and frequently is, turned off.

Many medical groups have issued concensus statements that a patient has the right to refuse treatment, and the right to withdraw and ethically, whether pacemaker or defibrillator makes no difference. For a more comprehensive discussion, I urge you to look at this article. 

https://www.jpsmjournal.com/article/S0885-3924(11)00202-8/fulltext

turning it off

by Tracey_E - 2020-10-17 17:17:57

We always have the right to refuse treatment and it's up to you if you want to replace it or not. You'd probably have a hard time finding a doctor willing to turn it off for liability reasons.

The pacer would not keep us going if we needed resuscitation. It can send the signal to beat, but it's up to the heart muscle to respond and contract. The pacer will continue to send out signals when we die until it's turned off. 

I have a living will, but it does not mention my pacer.  For most of us, turning it off does not mean "dying in peace." It means our heart would go back to working the way it did before. For a very few, that might mean the heart might stop but more likely, it means we'd just feel bad and be in danger of an episode for who knows how long. It's ultimately up to you what you want to do, but turning off a pacer is not like turning off life support.

Gotrhythm

by AgentX86 - 2020-10-17 20:50:12

I said it had no business here because it's not a medical question, rather a legal/ethical question.  I don't think any of us practice elder law in New Jersey.  No? Lawyers get testy when one practices law without a license.

Gotrhythm and Blondpacer

by Gemita - 2020-10-18 03:47:07

Gotrhythm, thank you so much for the link to the ethics of pacemaker deactivation in terminally ill patients.  I will print this and keep it with our Wills.  A really thorough, helpful discussion, raising many valid points that clinicians would do well to consider.

In Blondpacer's case I would ask whether her current health condition/illness is a terminal one or a quality of life one, or both?   If her team feels it is a quality of life one that could be better treated, then I can see why they might be concerned about the ethics of deactivating the pacemaker, hastening the decline in her health and causing an earlier death.  

Blondpacer are you willing or able to share with us any further thoughts?  Have you read the link provided by Gotrhythm?  It is such a valuable discussion which I will keep by my side to help with any decision making when the time comes.  I do hope for the very best for you and that your suffering will come to an end very soon.

Discussion

by Blondpacer - 2020-10-18 09:02:03

I think it's a good discussion because we are different than other people. Whether we like it or not. We cannot count on doctors to make the decisions. I have no children and small family. I never really thought about it until I got small fiber Neuropathy and autonomic Neuropathy. Its not the condition people are educated on. I have total body nerve damage that will attack my organs at some point. I have neurocardiogentic syncope which only affected my heart. But now bowels no longer work. Many other things too much to list. No I'm not depressed. I'm being real. I also had.a botched floroscopy epidural spinal tap to add so my trust in doctors is zero. I had one great cardiologist but moved the rest do not understand dysautonomia so I should have never gotten the spinal tap. I do not want to wait around to watch each organ fail. My father died of a heart attack and infection at 89 but had infections. He had low blood pressure too but no pacemaker was needed per doctor. My decision is based on MY decision not doctors or family or husband. FYI - Neuropathy is not only hands and feet and only get when you are diabetic. Mine started after antibiotics. Floroquinlones cause Central Nerveous System conditions as I found out thru research. 

right to die

by new to pace.... - 2020-10-19 11:43:11

I to have often wondered about that since recieving PM in 2019 would i replace it in 12 or 13 years as will be 92.  Am pacing 47% of the time.  Afib 7% of the time.  At the moment  the rest of my health is good. Just had a shoulder replacement.

new to pace

Boiling down the answer

by Gotrhythm - 2020-10-19 14:11:51

To give a simple answer to your question, there is is general consensus among medical ethicists, that a person has the right to refuse treatment, and the right to have treatment stopped. So yes, you do have the right to have your pacemaker deactivated. And BTW, "deactivated" seems to be a more acceptable, less emotioally loaded term than "turned off."

So yes, you have the right but whether to deactivate, and when, is not a black and white issue.

Like others, I have already decided not to replace my device. If I put mysel in your shoes, I certainly can understand why you would consider deactivation.

Your situtation, though very difficult, still isn't black and white. I think you would do well to assemble a team of advocates. A counselor who can help you think through all your options while being objective. And a legal advisor, who can thread through the legal brambles. 

Just for clarification, here is the AMA ethical position

...a patient who has decision-making capacity appropriate to the decision at hand has the right to decline any medical intervention or ask that an intervention be stopped, even when that decision is expected to lead to his or her death and regardless of whether or not the individual is terminally ill. (emphasis added)

Source:    https://www.ama-assn.org/delivering-care/ethics/withholding-or-withdrawing-life-sustaining-treatment