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The right to die--ethical dilemmas in persons with spinal cord injury. SCI Nurse?

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  • The right to die--ethical dilemmas in persons with spinal cord injury. SCI Nurse?

    http://www.ncbi.nlm.nih.gov/pubmed/12510497

    This is an article on PubMed that sounds interesting. However, this link is to the abstract. Links to other articles from this source have been shared. Is it something that Care Cure has access to and can share?

    I've been researching this topic for some time. Most information seems to be focused around the terminally ill. I have no desire to end my life (at this point). However, difficulties with extreme pain and reading about others has me questioning how I would handle certain circumstances. I already have an advanced directive and other legal items in place.

    My goal with this post is to educate myself (and potentially others) about the topic as it relates to spinal cord injury. I'm not aiming for a discussion about suicide. There are many considerations specific to conditions that are not considered terminal. This article sounds like a good example. Please feel free to suggest others as well.

    If this cannot be shared, it's fully understandable. Also, if this topic is not appropriate for Care Cure please let me know. Thank you in advance for any assistance.
    Jason

    C5/6 Complete - water skiing accident 1994.

  • #2
    This article is from SCI Nurse, which is a journal that is no longer published, by an organization (AASCIN) that no longer exists, and was never available on-line. The article is pretty old too (2002). You may be able to get a copy of the article through inter-library loan if you speak to your local librarian, or have access to a university or large hospital library.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


    • #3
      Ok. Thank you for the reply and direction. It's easy to see some of these things from the patient/injured person's perspective (not that a path forward is clear). Thinking through some things, you start to catch a glimpse of what choices and feelings the medical staff must struggle with. Just sending a quick thank you to you and your team for all that you do! It's greatly appreciated.

      No need to reply btw
      Jason

      C5/6 Complete - water skiing accident 1994.

      Comment


      • #4
        Another old article, but even more an issue now than when it was written, here:
        http://www.ncbi.nlm.nih.gov/pubmed/9238609

        I just finished my advance health care directive, which addresses situations when I am not able to speak for myself, not limited to just end-of-life. I have no family and am trying to make it clear and not emotionally draining for my health care agents. Most important thing is to discuss thoroughly with those who have accepted the responsibility for your health decisions. Good for you, jeft, being proactive!

        Comment


        • #5
          As someone with experience both as a patient and as a physician, I full-heartedly believe in an individual's right to die, but even in more progressive jurisdictions (like Oregon), I have mixed feelings about their assisted suicide laws. As I understand it, in Oregon the law only provides the patient with a lethal dose of barbiturates and the patient still has to have enough cognitive and physical capacity to appreciate what he or she is about to do, and to administer the drug to themselves. In my opinion this is wrong.

          It is impossible to judge someone's suffering from the outside or how much "correctable" depression or mental illness might or might not be playing a part. If we assume the individual (as in Oregon) has the mental clarity to make the decision to end their life and the physical ability to do so, then the only thing stopping the individual from killing themselves before they received the drug was the fear of a little pain before death. If their desire to die was not strong enough that it overrode their fear of whatever short period of suffering would follow a self inflicted knife or gunshot wound, then I certainly would not be comfortable assisting that person in ending their life.

          Likewise individuals who no longer have capacity because they are intubated or unconscious and unable to express their desire or lack of desire for further medical treatment get the full court press medically, because it's the safe thing to do. If they haven't left clear medical directives the healthcare system will almost always err on the side of the most aggressive life prolonging treatment, and that's probably for the best.

          The only ethical dilemma I see is in individuals who have a strong desire to die and the ability to express that to the rest of us clearly and coherently, yet lack the physical ability to take their own lives such as complete quadraplegics who lack the necessary hand dexterity to commit suicide. The right to die for these individuals is truly something that they have to rely on others for, and it makes for a very sticky situation. Of course one could argue that even these physically incapacitated patients who can still speak and express their desires could refuse to eat or drink, but as opposed to the more lethal means available to the rest of us, that is an unneccesarily cruel way for someone to die.

          But in the end, from a physicians perspective, we all took an oath to "do no harm" so the easiest thing for a non-psychiatrist to do is pass a suicidal individual on to a psychiatrist (this is also the right thing to do). But suicide for a psychiatrist is the worst possible outcome for his patient and the ultimate failure for the physician, so you won't find many who would even tacitly admit that there is such a thing as "rational suicide".

          Comment


          • #6
            Thanks for the article WaveWolf and for comments Funklab. As with any longstanding debate, there are strong/valid points on all sides. The more I read, the more difficulty I have with my own thoughts on the matter.

            One area that I find challenging is palliative care. If you have a terminal illness, you have access to palliative care to help ease suffering. This is true regardless of your thoughts about right to die. With conditions like SCI, you can have similar suffering for decades. My understanding is that you have the right to refuse treatment (certain assumptions here) at any time. For many, they would not last 6 months without treatments (vent, antibiotics, cath changes, etc.). However, I don't think this would qualify as terminal. Therefore, palliative care isn't available (that I know of).

            Has anyone found a way to ease suffering for someone that refuses ongoing treatments? If you reach a point where pain is just too much and refusal of treatment option is exercised, is there a way to receive palliative care?
            Jason

            C5/6 Complete - water skiing accident 1994.

            Comment


            • #7
              Keep in mind that palliative care is NOT the same thing as hospice care. The latter is generally restricted to those with terminal diseases expected to live less than 6 months, who are DNR, and who are no longer receiving or requesting curative therapy. Palliative care may be available to anyone with a serious (usually non-curable) chronic medical condition. It does not preclude ongoing treatment, nor does it require that someone be DNR (do not resuscitate). Palliative care does focus on comfort care, and treatments or therapies to ameliorate painful or uncomfortable symptoms, complications, and side effects of the disease or condition.

              Palliative care is a multidisciplinary approach to specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, physical stress, and mental stress of a serious illness—whatever the diagnosis.
              Palliative care is really a fairly new emerging specialty, provided best by an interdisciplinary team, and may not be covered by all insurances at this time. Those who are wondering about it's applicability to their own situation should discuss this with their own PCP, and if necessary, seek information about resources in your area from these organizations:

              http://www.nhpco.org/
              http://www.npcrc.org/
              http://www.npcrc.org/content/26/Pall...nizations.aspxhttp://hospicecare.com/resources/pro...re-essentials/
              http://hpna.advancingexpertcare.org/
              http://www.eapcnet.eu/
              http://www.chpca.net/

              (KLD)
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

              Comment


              • #8
                I've debated this with my psychiatrist quite a few times. She claims Do no harm conflicts with killing the willing, to which I sarcastically said, "Or conflicts with profit for doctors, no offense, of course." I've often wondered if I came become the Roe of the Right-to-Die movement. I should be able to be put down like an animal and not be forced to repaint my walls with blood.

                Comment


                • #9
                  Anyone other than a neurologically "locked in" person has the choice. No need to make excuses. If the fear of dying hasn't overridden the pain of living you aren't really suicidal. Anyone genuinely suicidal is already dead. They don't pussy-foot around. They just do it. If you're worried about it hurting, or leaving a stain, you don't really want to die. You want something else out of notion of suicide other than your death. Probably attention in the form of commiserations and enablement. Once the suffering is authentically worth dying for, the fear of living exceeds the fear of dying, and BLAM! Dead. It's not rocket science nor does it need validation by law or medicine. It is a natural right. Our lives are ours to dispense with as we see fit. Just do it, or just don't.
                  "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                  "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                  "Even what those with the greatest reputation for knowing it all claim to understand and defend are but opinions..." -Heraclitus, Fragments

                  Comment


                  • #10
                    Originally posted by Oddity View Post
                    Anyone other than a neurologically "locked in" person has the choice. No need to make excuses. If the fear of dying hasn't overridden the pain of living you aren't really suicidal. Anyone genuinely suicidal is already dead. They don't pussy-foot around. They just do it. If you're worried about it hurting, or leaving a stain, you don't really want to die. You want something else out of notion of suicide other than your death. Probably attention in the form of commiserations and enablement. Once the suffering is authentically worth dying for, the fear of living exceeds the fear of dying, and BLAM! Dead. It's not rocket science nor does it need validation by law or medicine. It is a natural right. Our lives are ours to dispense with as we see fit. Just do it, or just don't.
                    Many genuine suicidal attempts fail. It has nothing to do with the fear of death, but about efficiency. Are you going to seriously argue with me that terminally ill people who're suffering don't genuinely want to die peacefully because they're not putting a bullet to their skull?

                    Comment


                    • #11
                      SCI Nurse, thank you. This is excellent information. When I was in my most serious pain, I checked into palliative care in my area. I could never get a clear understanding of the differences between hospice and palliative care. There seemed to be two paths. 1. Pain management - for chronic long term situations. 2. Hospice/palliative care - end of life stages. This may be in part because I live in an area without an established multidisciplinary practice.

                      There still seems to be lots of grey areas when it comes to pain management for someone who is not terminal. Meds often cannot control the pain. As funklab described above, if you lack dexterity, you can find yourself in a real jam for a very long time.

                      regardless, I always appreciate information and feedback
                      Jason

                      C5/6 Complete - water skiing accident 1994.

                      Comment


                      • #12
                        Originally posted by Le Todd View Post
                        Many genuine suicidal attempts fail. It has nothing to do with the fear of death, but about efficiency. Are you going to seriously argue with me that terminally ill people who're suffering don't genuinely want to die peacefully because they're not putting a bullet to their skull?
                        Anyone with reasonable hand dexterity and an IQ above 70 can easily kill themselves on the first try. I've definitely seen people fail, but I'd argue they were in the depths of a deep depression that did not allow rational thinking (shooting yourself in the abdomen?!?!?!?!? in what world is that going to work well for you) or the old standard overdose on tylenol which is almost always meant as a suicidal gesture (but can easily cause liver failure and a prolonged and very painful death). I haven't searched google for ways to kill yourself, but I can't imagine it would take more than ten minutes of searching to find an effective way, if you're too apathetic for that, you are severely depressed and not "rationally" suicidal (whatever that means). I've seen dozens of people in the hospital who have failed suicide attempts with blades, guns, drugs and self-induced car wrecks, but with one exception they all said they were glad to still be alive (despite the severe medical consequences of what they had done to themselves). The one person who still wanted to die had been intoxicated when they tried to kill themselves, or they probably would have been successful.

                        Enabling someone to commit suicide isn't necessarily a bad thing, but the healthcare system doesn't need to have anything to do with it (in all but the most extraordinary situations). The one thing that bugs me in some ways is that because of the system we have to keep people alive (involuntary psychiatric commitment and the illegality of suicide) people outside of states with a right to die law cannot say goodbye to their friends and family and bow out gracefully surrounded by loved ones. That part is a shame, but the same can be said for 95% of people who die from natural causes.

                        Comment


                        • #13
                          I agree. I also find it distressing the number of my clients who refuse to set up an advance directive for themselves, and to choose an agent who will follow their wishes related to this. Whether you want extraordinary measures taken or not in a serious illness, unless you have set up an advance directive, all efforts will be made to maintain you "alive". I know mine is quite extensive in the specifics for myself, and I have made this very clear to my sister (who is my first "agent") that I expect her to make decisions for me if I cannot that are consistent with my directions in my advance directive.

                          (KLD)
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                          Comment


                          • #14
                            Irelevant input . Please delete
                            Last edited by Stormycoon; 01-02-2016, 01:37 AM.
                            I am not your rolling wheels
                            I am the highway
                            I am not your carpet ride
                            I am the sky
                            I am not your blowing wind
                            I am the lightning
                            I am not your autumn moon
                            I am the night, the night..

                            Comment


                            • #15
                              Originally posted by funklab View Post
                              Anyone with reasonable hand dexterity and an IQ above 70 can easily kill themselves on the first try.
                              I know, but I'd hate to shoot my brains out, live, and having had wronged my beautiful visage and brilliant mind.

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