End of Life Issues

Sorry if this is a morbid topic but it's one I've given alot of thought to. I wonder what happens if say you have a terminal illness and you are nearing the end. I have an ICD/PM and it concerns me that I won't be able to die. I've heard some stories of people who struggled to die due to having these devices. My husband & I prepared our medical directives in 2004 while updating our wills. They are pretty general and I wonder if I should add something relative to this unforeseen event in my life. I don't know what it would be exactly because I can't see any doctor removing my battery pack until euthanasia is accepted. I heard of one gentleman who was in a nursing home & did nothing but sleep for the last 2 years of his life because his pacemaker was doing too good of a job keeping him going. The thought of costing my family that much money just makes me shudder! Has anyone else wondered about this or am I worrying for nothing?

14 Comments

End of Life Issues....

by maryanne - 2008-09-26 11:09:44

You present and ask very valuable questions....ones that should be discussed more often...and I commnend you for have the foresight to think about such a delicate topic. Being in health care I see many situations like this that never were dealt with.

From a personal experience.....my father had a PM....when it was determined that he would never recover from his stroke and would most probably be in a coma for the rest of his life.....we asked to have his PM turned off....we felt that if he was meant to go on...the nature would step in and take over.

He passed away 2 days after we had the PM turned off. Now I have a PM...and I have told my husband ....I do not want to left as a vegetable....if my quality of life is past...then I want my PM turned off...to me it's like being on a ventilator....if I need machines to keep me going..then mo thank you...we didn't come into this life with machines...and I for one will not leave with one or as one.

Those are just my thoughts...it takes a strong person to bring up this topic and to speak about it openly...you are not being morbid...but realistic....thank you!

Pacemaker vs ICD

by ElectricFrank - 2008-09-27 01:09:06

There are actually two issues here. It is very unlikely that a pacemaker would extend life very long because the pacing pulse is only strong enough to cause a relatively healthy heart to respond.

The ICD is another matter. It is similar to the external defibrillators that deliver a large enough shock to restart a heart that has arrested. The main difference is that the ICD keeps trying automatically where the external defib has to be commanded by the medical people. However, the ICD defib pulse uses a lot of energy from the battery and my guess is that it can only deliver a very limited number of shocks.

One thought would be to put a statement in your medical directive that you consider repeated shocks by the ICD to be equivalent to being resuscitated and against your wishes.

By the way be sure you and your husband have really considered the reality of letting the other one die. Nursing homes are filled with people who had the best of intentions to let go when the time came, but were overwhelmed by the decision. I have been through this with my wife's death and was so glad we had talked it out in detail a few years ago.

frank

Thanks everybody!

by Gonnie - 2008-09-27 03:09:07

I guess you really can throw anything out to this group and get some very thought provoking conversations going. I'm going to be discussing this with my family because as Pacergirl said, it really would be a gift to them. My FIL had a DNR order & it was a huge relief to us when the time came. He couldn't get better & the decision was his to make. I like Frank's idea to include a statement regarding repeated ICD shocks being against my wishes. I'm so glad to have this group to bounce things off of!

Last Minute Decisions

by mrag - 2008-09-27 03:09:36

Great question. I don't know, but would think Frank raises good points. In the US there is a non-profit group: http://www.funerals.org/
with local chapters (like in Philadelphia) that get into "advanced directives" and "durable power of attorneys" and so on.

I'm still working my way through their site and trying to get "my details" worked out, but they may be able to expand on Frank's "ICD/resusitation" idea. Please post back here if anyone learns anything.

Not to be insensitive, but none of us are getting out of here alive and people with PM's and ICD's probably are closer to the front of the line than the back of it. Hence we here probably should have the specifics on this stuff now rather than later.

We've been through this and...

by chip - 2008-09-27 04:09:42

We went through this recently with a family member. She was terminal and in the last stages of life and we discussed deactivating the pacemaker with her doctor. He indicated to us that doing so could make her last days more miserable then needed.

PM recipients and their families often make assumptions that pacemakers prolong the dying process and thus prolong suffering. However, a pacemaker is not a resuscitative device. In general, pacemakers do not keep terminal care patients alive, as terminal events are often due to sepsis, hemorrhage, pulmonary emboli, or arrhythmias from metabolic abnormalities associated with end-stage cancer, liver or renal failure. At the time of death, the heart is usually too sick to respond to the pacemaker generated signals.

In most other situations, deactivation is not indicated since the result is likely to be a symptomatic bradycardia, producing signs and symptoms of worsening heart failure like fatigue, dizzy, dyspnea. In contrast to popular belief, it is rare that disabling the pacemaker will result in a swift and painless death as few patients are 100% pacemaker dependant--especially during the dying process, where tachycardia is the most common rhythm.

This is a very personal decision that everyone needs to make and put in writing for your family. Believe me it is an act of kindness on your part!

Live Life Well & God Bless

good morning

by jessie - 2008-09-27 05:09:45

we just updated our wills and one of the things we asked for is that my pacemaker be turned off if i am in a spot where there is no quality of life left. it is a good question. when my dad died he had discussed death with two of his four living children. he also had a living will. the doctors came to us and explained he would not recover and be on a respirator for the rest of his life. he was debilitated physically,, bedsores and unable to walk anymore. it is still a very hard thing to do. to agree with the drs is a very hard thing for family members and i felt guilty for a long time. i think this is part of the grieving. it is necessary to talk these things over and have a plan with a loved one. jessie

Heart & ICD/defrib

by rayan - 2008-09-27 05:09:57

I had the same thoughts about dying and the implanted device. I told a few friends That had I died before the implant, when I went to cardiac arrest, it would have been so simple. Wouldn't have suffered at all. It happened in my sleep, while at the hospital. Now I am wondering the same. I know that won't live forever, want it quick and painless. Can't sleep either am up 3 to 4 times a nite, also I am a very light sleeper. Hope there won't be too much pain. Get very depressted. Been having dreams about my deceased 2 brothers & a sister, who have died of acadiac arrest at a very young age.
They were walking one minute, the nest minute they are gone. Never had such dreams before. Wonder why now. I think its easy death, going the the way they died. Didn't even know.I truly miss them.

hi

by jessie - 2008-09-27 08:09:34

it is funny i lost a brother at 30 years of age i was 27. i was busy, two small children and did not grieve until i was in my 60's as i did not ever have the time. i wrote his memoirs from our childhood for his children one in texas, one in virginia and his daughter my niece in ontario canada. i know i was so calm and so sick and it would have been easier to die then but then who knows what lays in store for any of us. i did not die and you did not die so god must still have a purpose for us.so my friend most of us i think have a bout with depression. tell your dr. there is help. been there. done that. jessie

Turning Off PM

by SMITTY - 2008-09-27 10:09:01

One more comment and I'll put away my pencil and paper on this subject.

People that are very sick, or in a coma, usually have several life support devices helping them stay alive. These can be a pacemaker, respirator, feeding tube, oxygen mask or an IV with medicines. Take away any of these and the patient can die in a relatively short time, depending on the device removed. So to me the pacemaker deserves no special consideration in such situations. It is just another life support system.

For those of you that wonder about turning off a pacemaker, it is my understanding that a PM can not be turned off. I say this because I once asked to have mine turned off. (Not because I wanted to die, but the dang thing was shocking me and I wanted that stopped) I thought my request was complied with but I was told later that the low set point was changed from 60 to 30 and that was as low they could go. This meant my PM would do nothing unless my heart rate dropped below 30, which it never did and the PM stopped shocking me.

What I'm trying to say is if your want a PM "turned off" on a very sick loved one, you really don't have to say "turn it off." You can just ask for the settings to be lowered to the minimum and since settings on PM are changed all the time, I would see this as a legitimate request. Of course the doctor or the law may see it differently, but it is something to think about.

Smitty

EOL Issues

by bobad - 2008-09-27 10:09:07


I've often wondered if the PM could prolong life in situations where it's inappropriate. I can imagine situations where that could occur. The cause of death in many aging patients is respiratory and/or renal failure, causing the heart to stop. A severe stroke can also cause the heart to stop. If the heart keeps ticking away merrily, I can imagine it could cause one to linger a unnecessarily for a day or 2. I think everyone knows when its time to switch off the PM, so a properly worded living will is very important to PM wearers.

Yes, please turn off the lights

by pacergirl - 2008-09-27 10:09:51

I have a living will and it states very clearly... DO NOT hook me up to long term equipment to sustain my life. If my spirt is ready to move on, please let me go.

Like many people I do not wish to live my life laying on a bed with my PM keeping me going.

Making this decision was the best thing I could have done for my loved ones... to remove the responsibility of having to decide, make "the" decision to let me go. They have some peace and I will have moved on. It actually has been my gift to them.

Pacergirl

P.S. Not that I am looking at checking out anytime soon he he!

Pacemaker & Dying

by SMITTY - 2008-09-27 12:09:22


Hi Gonnie,

This is a subject that comes up here from time to time and very simply put, a pacemaker will not make it more difficult for a person to die. To me "will not make it more difficult to die" sounds like the craziest thing I have ever written, but it is fact when it comes to a person having a pacemaker and dying.

While your pacemaker may keep sending electrical impulses to your heart trying to make the heart chambers contract, contraction cannot occur although those impulses may be detectable by some electronic instruments such as an EKG. Even if you could get heart chamber contraction, unless the lungs are functioning and providing oxygenated blood for the heart to pump, the heart nor any other organ can continue to live. The lungs are just one of many organs that must keep working for a person to stay alive.

As for the person being in a coma for two years because his pacemaker was doing such a good job, I would be hesitant to give the pacemaker that much credit. As I mentioned earlier there are many, many body parts that must keep working to stay alive. So while our heart stopping can take us out in a second, it is not the sole reason we stay alive. Of course if a person is in a coma having a pacemaker keeping the heart functioning will make the person more comfortable and may extend life a short while, but again there are many things that must continue to work for that person to stay alive.

As for what you should put in your medical directives , I would say talk to you doctor or attorney about how a pacemaker is handled after death. I do know they are removed after death, no matter if you have cremation or burial the PM will be removed.

Smitty

ooops.....

by maryanne - 2008-09-27 12:09:43

Sorry for the typo's....I should have proof read the post.....sorry!

Live till I die

by pacergirl - 2008-09-28 10:09:09

Gonnie,

hi, I really feel like it is a gift to my loved ones... and to myself. To remove the decision making about my demise to me. Just in case the situation comes up.

I expect that I will be riding a motorcycle, skydiving, white water rafting or participating in some other exciting event when I go, so it really won't be much of a problem for them. If not actually doing these these things when it happens... I will at the very least be thinking about them! he he

For me life is short and I try to make the most of every day!

live, love, laugh and enjoy!
Pacergirl

You know you're wired when...

You can hear your heartbeat in your cell phone.

Member Quotes

Stay positive and remember that your device is your new best friend.