Aid in Dying Available Outside Oregon, Too: Advocates for End-of-Life Choices Release Story of Nebraska Man Who Took Life-Ending Medication
Advocates for End-of-Life Choices Release Story of Nebraska Man Who Took Life-Ending Medication
July 28, 2011
- Compassion & Choices (C&C), the nation's oldest and largest nonprofit organization working to improve care and expand choice at the end of life, today released the story of Alan Hansen of Lincoln, Nebraska, and the peaceful death he achieved with life-ending medication.
"Alan deserved to die at the time and place of his choice, after a long battle with a terminal illness," said C&C President Barbara Coombs Lee in releasing the story of Alan's death. "Alan and his family did nothing illegal, because he obtained and took the life-ending medication himself. But they had to proceed in secrecy, when Alan should have been able to ask his doctor for aid in dying and receive support from his healthcare team for the peaceful death he chose. Solid research and experience shows access to aid in dying gives terminal patients enormous comfort and peace of mind, and it harms no one."New Poll: Oregon and Washington Residents Lead Nation on Informed Choice at the End of Life
National Journal-Regence Poll: Over 70% OR and WA Voters Support Death With Dignity Acts
July 22, 2011
Compassion & Choices (C&C), the nation's oldest and largest nonprofit advocating for better end-of-life care and choices today responded to the recent poll "Living Well at the End of Life," conducted by The National Journal and Regence Foundation. The poll reaffirms that Washingtonians and Oregonians prefer to enhance the quality of their life when faced with a serious illness, rather than extending their lives with every possible medical intervention. Public opinion research has consistently found that Americans want terminally ill individuals to have the right to make their own informed choices at the end of life.Palliative Care Information Act at the Bedside: Achieving Truly Informed Consent
By Barbara Coombs Lee
July 20, 2011
New York has a new law, called the Palliative Care information Act (PCIA). It's simple, and short, and outlines a specific standard for doctors who care for patients at the end of life.
The PCIA says when a disease has advanced to the terminal phase and a patient is unlikely to survive 6 months, doctors must offer to inform them of this, and advise them of available treatments aiming to bring comfort, not vanquish disease. At this point the disease is beyond reasonable hope of vanquish, and the symptoms may escalate to the point of intolerance. Patients have a right to know when disease-specific treatments offer only a miniscule chance of prolonging their lives for a few weeks or months. And they have a right to know palliative therapies could make them feel a lot better for the time remaining.
Before the PCIA became New York law, they had no such right. I'd like to explore what this means for patient care and decision-making, with a concrete example. I hope to reveal and how stunning a reform we might expect.
Great thread, Lynn. BIG TOPIC, though. People have been afraid to address this for a long time.
I used to think that God alone should be in charge of when and how a person dies. But as I grew older and saw more of life in hospitals and nursing homes I sit on the fence now, so to speak. (My mother got to the point where she couldn't walk, nor could she recognize most of the family anymore, and my Dad could no longer care for her.) But there was still quality to her life as she was taken care of by awesome nurses.
There is no way I would put my son through what he had to go through with his Dad on life support. I would not want invasive treatment if there was no hope of recovery from a terminal illness and I was in great pain. I am a big chicken and have to take a tranquilizer just to go to the dentist!
But where is the line drawn when decisions are made for children and the elderly without their ability to make a choice? Would choices be made for them like in the case of Terri Schiavo:
"On March 31, 2005, Terri Schindler Schiavo died of marked dehydration following more than 13 days without nutrition or hydration under the order of Circuit Court Judge, George W. Greer of the Pinellas-Pasco's Sixth Judicial Court. Terri was 41."
I remember this case so well, and it still hurts me to think of her suffering as her parents watched helplessly. The husband made her go through this when her parents wanted to care for her. (Husband wanted to remarry, by the way, which he did shortly after Terri's death). Dying of dehydration is very painful! There must have been, deep inside of Terri, a strong will to live as she survived for 13 days. I think what was done to her was very cruel.
Quality of Life: I would base my decision on what quality of life a person has. I could not stand to see ANYONE suffer because of a terminal illness. If a person could have hospice and/or palliative care during the last days of their life that offered a gentle, reasonably comfortable existence, that would be the route I'd take. I'd want to take advantage of every minute I could spend with my family while not putting them through trauma watching me.
This is such a difficult topic, isn't it? So many people have different thoughts about it and some refuse to talk about it at all. My faith in God is strong, but that doesn't mean I don't have fear. It's impossible for me to decide what OTHERS should do when you aren't in their position. Thus, I sit on the fence until I personally am faced with circumstances that cause me to make a decision. I pray I never have to face that. And I pray no one ever again has to go through the experience Terri Schiavo and her parents did. Amen.
So beautifully put, Cheryl. I remember the Terry Schiavo case and I was very disturbed by it. I had ambivalent thoughts about it, though. Should this poor young girl continue suffering? She really didn't recognize or respond to anyone, although her parents insisted that she smiled at them. The doctors said it was just a reaction from her facial nerve. She had had a massive stroke and would never be the same. If it were my child, I'd want her to live, yet her husband (who did prolong her life as long as he could) needed to get on with his life. You can't put yourself in someone else's shoes. So, I held my judgment.
In the case of the article, this is for the people themselves who choose dieing over their suffering. Dr. Jack Kevorkian went to jail because he assisted people who chose to die.
In that case listed above, if I were in so much misery and the doctors gave me no hope of a recovery and I would have to suffer terribly for years to come until God took me, I think I would want to be helped to go peacefully by injection. I'm sure God would forgive me and not want me to suffer.
Hi Lynn - Looks like we're in this 'room' (I see threads as different rooms we visit) almost at the same time!
In Terri's case, I thought the parents - not the husband who wanted to get on with his life (nothing wrong with that, for sure) should have been given custody. If they believed Terri smiled it may be similar to when parents were told their baby's smile was just gas. Who knows for sure? Although her condition was very severe, her body was strong and held out for 13 days. I can't imagine the parents' agony having to stand by helplessly. Breaks my heart for them.
I totally agree with you on that 3rd paragraph, Lynn. I would want to be released from prolonged pain and suffering, which also puts your children/family through hell watching you go through it. Actually, I am pretty sure that this is being done every day in hospitals/hospices. All it takes, a nurse told me, is a little more sedation than they would normally give to a person who was already weak. I think many doctors and nurses decide when enough is enough. My son simply could not make the decision to have his Dad taken off life support (his Dad and I had been divorced for a long time but we were friends), and I understand that. So I truly believe that the night we all went home to get some rest and no one was at his bedside, the doctor decided to take him off. Shawn got a call from the doctor early in the morning.
I do believe that often a person's soul can leave the body even though the body is 'alive'. I read an awesome book many years ago about how the very elderly who line the hallways of nursing homes, and who seem to be staring off into space (dementia, etc.) are actually practicing being away from their body. They come and go. Many of the patients told the author, (a doctor who happened to believe them) stories of their travels and angels being around them, and light, etc. It was VERY interesting, and it helped me when I had to be at the hospital with my mother and saw many of the patients sitting in the hallways, staring far far away. Having had a childhood experience of being out of my body, of course helps me believe what they said and saw.
Okay, I've gone on long enough. What was a short thought can turn out to be long in words!
This is such a tough subject for many to talk about.
This is something very odd for me to say, but I do believe that I no longer fear death, and if it were me who no longer responds to anything, end my misery. I grew up obsessing about death, fearing death, asking why, why do we die, and why are we here. It was rough seeing my dad die of cancer, he was diagnosed in June and passed away 4 months later, in October, many years ago.
We humans need an explanation for everything, right? Ok then, birth is such a painful experience, and I do believe we are spiritual beings, perhaps death is so tough because our instinct is to stay alive, but we have to die to release the spirit?
Getting back to the topic, we fear death, but death is inevitable, so when we decide to prolong another's life, is it in their best interest? We must also consider that today's technology allows life to be prolonged much more than ever before, however are hospitals doing this to keep billing and running more tests on patients. End of life treatment and cost have grown astronomically, are the patients reaping benefits, or just the hospitals?
Hi dear Ariel. Your post is very interesting. You've gone through the loss of your Dad in a very painful way, and I am sorry for your great loss. This experience of losing a loved one changes us forever, one way or another. If you no longer fear death, I believe you must be quite a spiritual person. I don't think it's odd at all for you to say that you no longer fear death. But you would most likely be in the minority, surrounded by people who are fearful.
It seems I've been searching most of my life (since the teens) about life, death, the hereafter, ESP, psychic phenomena, etc. - maybe much like you say you "...grew up obsessing about death..." and perhaps we all have that little voice inside of us saying, "Where do I fit in this world?" I believe each of us has a place 'reserved' and sometimes it takes us a long time to find it. But then we ask, "Why are there people starving to death?" in some country - what is their place and why did God do that to them? I believe mankind causes most of these terrible problems.
Your third paragraph covers some controversial topics i.e. "...allows life to be prolonged." I wonder about that, too. What is a certain person's quality of life? If it is not what you wish for them, and often we know that the person involved would not want that for themselves, assuming they are in a position where they can't make the decision, then the "Do not resuscitate" sign is placed at the end of their bed. Such was the decision I had to make for my mother who could not make the decision herself, and I know she would hate living the way she had to in a nursing home, not recognizing any of her family.
We are living longer because of technology and it calls for bigger and better equipment, skilled doctors, nurses, and researchers, and bigger hospitals so that people can have life-saving operations and such. I'm not sure about the hospitals reaping benefits, but those who make the life-saving equipment, medicine and such I feel reap benefits! But don't you think many lives have been saved because of fantastic technology? When I see young people waiting for a liver or kidney, etc., it's heartbreaking.
I think it's wonderful that we have amazing hospice care now for those who are dying, which includes their families in the process. Leaving this world peacefully is what we all ask for when it's our time to go. I don't know if you've ever read anything about Elizabeth Kubler-Ross who basically pioneered how to make the transition peacefully, and the happy (as much as one can), productive, and spirital care for the dying. There are many articles about her, here is just one:
Sorry I talked so much! It's funny - when you're typing about thoughts like these that haven't talked about much, if at all, to anyone else, there's a tendancy to ramble on, which I did!
Hi, Cheryl and Ariel. I find your posts so interesting and you both make very valid points. I don't fear death any more. I used to, but two years ago I had an experience that changed my mind and made me even more spiritual than I was before.
In June, 2009 I was walking in the street, my leg got numb (I have a very bad back and it effects the nerves in my legs) and I lost my balance and fell. I hit my head on the curb and lost consciousness. I woke up with blood streaming down my face and my eye bloody and closed shut. I was taken to the trauma center of our big hospital and was there for six days. I had fractured my skull and had a subdural hematoma (a blood clot on the brain). People die from this type of injury; Natasha Richardson (Vanessa Redgrave's daughter and Liam Neeson's wife), Robert Culp from the tv show "I Spy" recently had the same injury and died from it. It was not my time....I believe in fate, destiny, whatever you want to call it. It was not my time!
My father died of lung cancer many years ago. He had had a chest x-ray from a mobile unit near his home. They saw a suspicious spot and told him to see him doctor. He went to the doctor the next day by bus and was told to go to the hospital which was annexed from the medical office where the doctor was. He walked into the hospital of his own volition and died twelve days later on morphine for the pain that he didn't have when he went in. At one point he was moaning and I said to him "What can I do for you, dad? What do you want?" His answer was "I want to die, that's what I want." The next morning he was gone. Was it his will? Was it his time? I don't know. What I do know is that six years later, my mother had stomach and breast cancer and survived for another fifteen years. She had a strong will to live, plus I feel that it wasn't her time.
My fall changed me. I no longer am intolerant of petty things that used to bother me before. I value my life more and my attitude is more optimistic than ever. But when it is my time, I would hope that my family would not let me suffer if they saw that medically, nothing more could be done for me and if the choice were left to me, I would consider being assisted to die in a dignified manner.
Cheryl, I too have rambled on and on. I don't usually talk about these things, so thank you both for allowing me to.
Hi Lynn. I don't think there's a concise way to talk about this topic and our experiences, so I guess "rambling" has to be allowed.
Holy smoke, Lynn, you REALLY HAD AN EXPERIENCE! I also believe that it was just not your time, nor your mom's time. What seems like a simple fall for some can kill them - yes, like Natasha Richardson. I was so sad to hear that because she was so full of life. I didn't hear about Robert Culp, though. I think those of us who have had experiences like yours have different views about life when we are 'saved'. And you're right... don't sweat the small stuff! That philosophy really takes over.
Last July I was having heart blips... felt like missed heart beats, and as I had a heart attack in 2003 my doctor sent me for a whole bunch of tests. While doing an ultra...something-or-rather, they found a tumour in my neck. In short, it turned out to be something called paraganglioma - a tumour around the carotid artery. I mean, it's hard to take that news in! My son took me to Vancouver (about an hour's drive) several times where I had another battery of tests and to meet the surgeon who would be doing the operation. This tumour was at a stage where it would be easier to operate on than if they hadn't found it for another year or two. It was, I believe, no accident that I was sent to have that imaging test. So, like you Lynn, I came out of all that feeling that life was so much better than I saw it before all that happened. I believe I've been saved from many close-call bad experiences throughout my life... just not my time.
That must have been a very frightening and shocking experience with and for your dad. For some reason he decided to have that x-ray... maybe (subconsciouly) to give him a short time to prepare, perhaps, but he knew he didn't want to suffer anymore. I respect that and I most likely would say the same thing if I was given that diagnosis and was in great pain. Just release me, please! Don't let me dangle on life support when there is no way of getting better.
Now, it does happen that people on life-support have awakened from a coma or other serious injury after a long period of time, so I'm not keen on taking someone off too soon. Boy oh boy, it's really tough on those who have to make these decisions alright. I think we all agree on what our own 'end' wishes would be. It's making the decision for another person that is even harder in my view.
I'm so happy I am getting to stay here longer. There's some reason for it... and for you, Lynn, and all the other people in the world who keep getting 'saved' when it's not their time. I LOVE YOUR ENTHUSIASM AND OPTIMISTIC OUTLOOK ON THINGS! That's one of the first things about you that came right through my computer to me!
Cheryl love, I found a kindred spirit in you as soon as we started to correspond. We've never met, but I feel like I know you a very long time. I think that if we did ever meet, we'd be fast friends in "real" life, too.
I wish other members would come in and convey their thoughts on this subject. So many people are spiritual but find it hard to express their feelings. Please members, if you're reading these posts, come in and just let us know how you feel about this subject, or just to "ramble" like Cheryl and I do.
I feel the same way, Lynn. You are a dear friend and I feel I've known you for a very long time, like we went to school together and onward! So many times I've wanted to just pick up the phone and call you and then I remember you're so far away. Yet on here, we are very close. And Mary is far away, too, in Ireland, but as we travelled the threads together, it felt like we were walking on the same path, as you and I are. What a great thing this Care2 is to meet such special friends. I think God meant it to be that way. Somehow Mary found her way to the group, and something made you click on that link I posted in Zen's group. I believe we get many lovely acquaintances along the way, but the close friends become extra special and I know my face lights up when I see your postings! Then I want to happy dance!
Thank you, Ariel, for joining in this conversation. It's a tough one, and many of us think about these things, but don't talk about them, often because things have happened that are just too painful. It's difficult to go through the death of a loved one, but thinking about our own flight from this world is another thing altogether.
I believe we should have the choice to end our lives in a dignified way if we are suffering from a terminal illness with no hope of improvement .
I watched my mother die in intensive care after major surgery for cancer of the stomach , it took over two weeks , she was distressed and in pain for quite some time, eventually they gave her enough morphine to keep her out of it and she passed without waking or saying goodbye.
18 months later I was diagnosed with bowel cancer at the age of 40 , it was a terrible shock , I had 2 major surgeries and found myself in the same intensive care unit where I had last seen my mother. I had awful complications after the surgery and became gravely ill. for a couple of weeks I was very sick , I watched all my loved ones suffer along with me , my daughter was only 15 ...
Thank goodness I recovered slowly and I am still here , but I made up my mind at that time that if I ever get a terminal diagnosis I would want to go while I was still able to choose , while I was still in effect 'me' , I would not want to put them all through the heartache of watching me die slowly and painfully. I will never forget watching them , watching me, when we all went throught my cancer treatment.
Assisted suicide is still illegal here in the UK ,if your loved ones help you they will be prosecuted...... people from here travel to Switzerland where they can get help. It costs £10,000 though which is a sum that is way beyond the reach of the average person.
OMG, Kay, what a horrible time you've gone through. It must have been terrible for you to see your Mom that way. And then to find yourself in the same ward just over a year later! I am so sorry you had to go through that with your Mom; at the same time, it gave you insight into what your daughter and family were feeling when you were so sick. You knew exactly what they were feeling while watching you.
I absolutely agree with you - I would want the choice so I don't have to go through that enormous pain and also to not traumatize my family, especially my son whose gone through it already with his Dad. I AM SO HAPPY THAT YOU GOT BETTER, MY FRIEND!
Assisted suicide is illegal here in Canada as well. Who could afford to go to Switzerland, though - as you say? I believe your pound is worth more than our Canadian dollar, so I know that's big money.
I think there is more chance of sympathy and action in hospice care, but not all countries, etc. have access to them or there are too few for those who are dying and want to 'go' with dignity.
As I hinted above, I do think it is happening in hospitals here without people actually knowing. When my mother was dying I lay beside her all night. In the morning a head nurse came into the room as I was waking up and she said something like, "Oh you shouldn't have to be going through this... go and have a coffee while we attend to your mother." When I came back there was no one in her room and I looked at my Mom's face as she lay on her side (she was on her back when I left the room) and knew she was 'going'. They had taken off the oxygen mask and I do believe they gave her a sedative (injection) - maybe morphine as well. I whispered to her that it was okay to leave, that Dad was waiting for her. (She died on September 9th and their wedding anniversary would have been September 10th). I truly believe they did something besides taking off the mask to assist my Mom's transition. I go for coffee and she's totally different when I come back 10 - 15 minutes later.
We can only hope that this is true, that hospital staff "assist" quietly. They are human and it must be hard for them to watch people suffer terribly.
Thank you so much for posting, Kay. You are a beautiful person! One never knows what another person has gone through. When I was in my teens I had sort of a 'mentor' in the woman next door. She told me to never be jealous or envious of another person, even when they looked like they had the perfect family, the perfect life, lots of money, etc. - because you just don't know what someone in the so-called perfect family may have gone through. Wonderful advice!
Luv ya, Kay!
Dearest Kay, I'm so very sorry to hear what you went through, both with your mom and yourself a year later. It's so awful to watch a loved one in pain. That's why I firmly believe that if I know that a terminal illness is my prognosis and nothing can be done for it, I would want to have someone assist in letting me go peacefully. It's not really legal here in the US, but as you can see in the article above, it can be done with no criminal consequenses.
I didn't know that you had posted because I'm still not getting any mail from my groups. Cheryl was kind enough to send me a message to say that you had posted in this thread. Thank you, Cheryl.
Cheryl, it's so true that you don't know what goes on behind the doors of a family that you might think has a "perfect" life. Never be envious of someone else. They could always have it worse than you.
Be well, you two, and continue having the upbeat attitude that I see in both you. I'm so happy to have you as my friends and I cherish the knowledge that I can get on my computer and immediately find a smiling face or a hug to greet me.
Luv you both....