Who to talk to: ethics of medical intervention to prolong life vs life taking its natural course?

[Anonymous]

I don't know how many of you saw this article in Sunday's WAPO
http://www.washingtonpost.com/opinions/our-unrealistic-views-of-death-through-a-doctors-eyes/2012/01/31/gIQAeaHpJR_story.html
but it really hit home with DH and I. The author of the article could be talking about our situation with a loved one. Does anyone have recommendations as to who we could talk to about issues/ethics associated with medical interventions to prolong a life when perhaps that life should take its natural course? We want to find someone with expertise in this area who can help us with decisions we have to make. Thanks.

[Anonymous]

Our hospital has a social worker who provides this type of counseling. They have seen it all

[Anonymous]

Every hospital has a bioethics committee; if your loved one is not in a hospital I'm sure there are bioethicists at local universities you could contact.

[Anonymous]

For a DNR, a social worker should suffice. Bioethics committees are for the most complex cases.

Is the loved one in the hospital, OP?

[Anonymous]

If the person involved can indicate their wishes that would be a good conversation to have with them. Sometimes it is easier to have the conversation with the person and their primary care doctor about what specifically is contemplated for their treatment, what the side effects are and how the treatment (or not) will affect the length and quality of their life. The primary care doctor is usually very experienced at having thse conversations and knows the person's history and current health. It definitely helps to talk about specific things that might be on the horizon rather than just generally. If the person involved can't indicate their wishes, you have to make the best decision you can for them, keeping in mind what they wanted or what they would want for medical interventions at the end of their life.

[Anonymous]

OP, I'm sorry for the situation that you're in. Just so you know that you can google and download generic DNR forms. My primary care doctor asks all her patients to fill these out b/c usually when you need something like this is when you're least able to act on it.

[Anonymous]

i think these are decisions that only the people who love the infirmed person can make, fully informed by the treating physicians. i believe in death with dignity, and i believe that beingalive is not the same as living. i say that as someone who just watched her dad be diagnosed with very very very late stage cancer and die in three weeks' time. maybe my view is based in part on the fact that there was nothing they could really do for him, but i think even more it is that i knew he would not want to be sick and weak and tired all the time. the person he was on his last day was not the person i loved and who loved life and his family. if your loved one isn't as far along, shall we say, ask youself what s/he would have wanted. is this a good life?

i wish you the best -- it isn't easy but lead with love and respect and i predict you will get to the right place.

[Anonymous]

OP here. Thanks for responses. Our loved one isn't currently in a hospital. He's at home with 24/7 care. Our ordeal started over 3 years ago when he had a massive stroke. He had a DNR order but because it wasn't cardiac arrest and he never stopped breathing, there was no need to use it. We spoke with both the hospital ethics person and social worker but, with medication, his condition was stable and it was too early to tell how much he'd be impacted by the stroke (hope springs eternal). After 3 months of in-patient rehab, he was discharged because his progress had plateaued. He has no voluntary control of muscles on his left side, no control of his bowels and has some dementia. He's not compentent to make decisions for himself. Medication controls his high blood pressure, diabetes and depression - among other things. He also takes blood thinners, cholestoral medication, and the usual meds an older person would take. He's suffered from seizures over the last three years which exacerbate the dementia. The first 6-12 months after the stroke, we were just grateful he was alive. Now, it's heartbreaking to see him continue this way (we see him almost every day). It feels like we're medicating him to keep him alive but are we doing the right thing? It won't be long before he exhausts his resources and will have to go on Medicaid which will means he'll have to go to a care facility. We know from he previous stays that it will not be something he likes.

Thanks again for the suggestions. I think we'll start by reaching out to his primary care physician.

[Anonymous]

OP, thanks for the article. It was very well written. I am a physician and the comment about death seeming like an option rather than an obligation to many people was interesting because that is what I believe our culture has come to.
In your case, I am sorry. Brain injury is often hard to deal with. I would not allow a feeding tube in my parents if they could not eat on their own AND they lost their faculties. I feel the same way about hemodialysis. That is where I draw the line. For each family, it will be different.

[Anonymous]

OP you are very wise and courageous. We all need to be thinking about these things. Start with his doctor. Hopefully he has expressed some preferences in more lucid moments. Good luck. Let's us know if you find any additional resources. I fear this is something we will be dealing with soon. My patents are older and my inlays are even older with minimal assets.

[Anonymous]

I would talk to the doctor about stop giving him the medication to keep him alive, such as: cholesterol medicine, blood thinners, pressure, etc. At this point I would just give medication to keep him comfortable - does he have arthritis? If he does, I would give him medication for pain for instance. I would just let nature follow its course.

[Anonymous]

We've been through this and know how difficult it can be. Is your loved one being treated at a hospital? If so, you might want to ask if there is an ethicist on staff you can meet with. Many hospitals have them. You might also ask to have a formal meeting with the doctors overseeing his/her care; that meeting could also include a staff ethicist and/or social worker. Quick conversations by the bedside don't allow for these kinds of sensitive conversations, but if you can organize a meeting, these issues can be discussed with more care. Finally, if you belong to a church or synagogue, you might schedule a conversation with a leader there. They're not medical experts, but they may be able to help sort out some of the difficult feelings that arise. Best of luck.

[Anonymous]

20:35 again. Sorry, missed the responses and your reply so my hospital comments don't apply. Sending support, hang in there.

[Anonymous]

bump for this poster

http://www.dcurbanmom.com/jforum/posts/list/0/220233.page#2210531

[Anonymous]

Thanks pp! I couldn't find it on google and I wanted to show the wapo article to someone.