the rights of the dying, do we really need it spelled out for us?

May 27, 2012 at 3:34 pm (death, death with dignity, defibrillator, doctors, dying, euthanasia, family, feelings and thoughts, how does it feel to die, meditation and pain, pain medication, religion and death, rights of the dying, truth, Uncategorized) (, , , , , , , , , , , )

the following is from another source and is sited at the end of the article.  my question after reading this is do we really need a book that tells us how we want to be treated and that in an ideal world this is how we would all be treated?  these are just some of my personal thoughts on the subject.  we all have some basic human rights and we know that not all in this world enjoy those rights for many reasons.  some it is political, religion or even on the smaller scale it is the world we as a family or community have created.  in other’s there are these rights and more, the luxury of being able to afford such rights.

my opinion is just that an opinion. the book itself may be of great value to some, just not me.  please make up your own mind if this book is for you.  my goal here is just to continue the discussion and not to critique this book in any way.

The Rights of the Dying

The right to be treated as a living human being

* we are born are we not with the right to be treated as a living human being? do this imply we must remind people we are living? in some cases it is easy  for our loved ones to stop asking our opinion about things, usually due to kindness and not wanting us to use our energy on the mundane.  most of us want the mundane. we want to know that we are still contributing on some scale no matter how small.  it is a blessing to me that my friends still seek my advice or opinion. sometimes they just want an ear and that is part of being a friend or sister or spouse.  would you check our account balance or has that check cleared? can you text since i don’t text? can you help? even in the smallest way is just part of being a living human being.

The right to maintain a sense of hopefulness, however changing its focus may be.

*in my opinion no one can take away your hope!! even if it is the smallest hope for the day. this is something that is personal to each of us. to say we can lose that right is ludicrous.  did the prisoners of the camps have the right to hope? of course they did. not even the Nazis and the extermination could take away their hope if they decided to make that part of who they were.  no doctor can change if i decide to hope, and if that hope is not that i live but that i die with ease that is my right too.  do i need a book to tell me that i have this right?

The right to be cared for by those who can maintain a sense of hopefulness, however changing this may be.

*this one is a bit more tricky. by cared for do they intend that medical staff be required to stay hopeful?  do they have to be hopeful for me to receive good care?  if we can focus on medical staff first, it is certainly desirable for my dr. to remain hopeful and to let that change. don’t they also have to be able to be honest with their patient. i for one want to know the real deal and not some fairy tale.  not that long ago women weren’t always told the truth and in fact dr’s could make that decision for the entire family..  sometimes husbands were told and then it was up to them to make the final decision of what the little woman would be told.  my dr. does not have to hope that there will be a miracle for me.  i can hope for what i choose.  as a former nurse it makes sense that an attitude of supporting the patient in what they hoped for would be requisite.  it is of course what we would hope for in family that cares for us.  let’s not mistake what we would like and what may not be an option. if you are being cared for by family they may not feel hopeful.  do we then say they are not adequate caretakers?

The right to express feelings and emotions about death in one’s own way.

* there are rights and there are responsibilities that go along with these rights.  do i have the right to say whatever i want without regard for the feelings of others? this isn’t just a question for someone who is dying. just because you are dying doesn’t give you the right to disregard the feelings of others.  someone who is not dying has the right to say how they feel about their life and those around you have the right to say that is not acceptable to me. if you are hurting someone else with your words how is it so special that you are dying?  the reality goes beyond this, if you were to say to your doctor i can’t take this and i am going to go home and end it all he then has to take steps to protect you.  this may not be the result you want however if you say whatever you want without thought to consequence it may not lead where you want.  telling someone they have the right without explaining the consequences seems a bit irresponsible.

The right to participate in all decisions concerning one’s care.

*this is a patients right and not just for the dying.  you may have guessed by now that it annoys me for someone to “write” a book without having some new or crucial information.  books cost money, people buy them thinking the person writing has some expertise unless it is just a personal account of events/your own life.  it does leave me wondering who is being denied this right? years ago elderly patients were not routinely being asked to participate and since they grew up in an era of the dr. knows best they often gave up this right willingly. it is sad to think this was happening, the good news is our society is making strides in rights for everyone.

The right to be cared for by compassionate, sensitive, knowledgeable people who will attempt to understand one’s needs.

* is this a re-hash of previous rights?  were the writers being paid by the word here? again in an ideal world and we would hope this goes without saying.

The right to expect continuing medical care, even though the goals may change from “cure” to “comfort” goals.

* we have entire specialties now that focus on the comfort.  hospice is the go to for this. they also

The right to have all questions answered honestly and fully.

* we should expect this not just as a patient with a terminal illness.  if we are not getting honesty from those around us this may not be a new problem.  my hope would be that we deal with dishonest relationships before we arrive to this gate.

The right to seek spirituality.

*this doesn’t seem to be a problem now if ever. when in the hospital a chaplain came to my bedside each day.  my issue was the opposite, it was assumed that i am christian and even when i explained as kindly as possible that i am not christian he pushed to come anyway.  he was a nice man and i couldn’t bring myself, even in intensive care, to assert my right NOT to seek his prayers.  oh well, i decided it wouldn’t hurt me so no harm no foul.

The right to be free of physical pain.

* one would only hope but i am here to tell you it may be a right, however, you are going to have pain and will have to decide how you want to handle this as an individual. my choice not to take meds may not be your choice.  pain is a part of living, again this is an individual choice. toward the end many change their mind about the comfort meds can offer. some decide to keep their awareness and forgo that aide.

The right to express feelings and emotions about pain in one’s own way.

*this is just filler. this has been addressed in earlier points.

The right of children to participate in death.

* again not sure why we need to be told that our family has the right as do we to be in their loving presence at the end if that is what all concerned choose.

The right to understand the process of death.

*each death is different and dr’s can give you some information based on previous cases but keep in mind your experience may be unlike others.

The right to die.

* we have the right to die but not with dignity except in a few states.  we can refuse life-sustaining measures but in doing so we give up the right to be pain-free.  those who oppose death with dignity say we can just stop taking meds or nutrition/water. in doing so we will eventually die a long and sometimes suffering death.

The right to die in peace and dignity.

* this is a legal right in some states but not in the majority. this is a shame on our society.

The right not to die alone.

*again this is not really a right as i see it. it is our wish for those who do not want to be alone at the end.  too many do die alone and lonely. until we have a society that does something to change this, it is an ideal and not a reality.

The right to expect that the sanctity of the body will be respected after death.

*if forced to call 911 as you are not under hospice care the 911 team must do everything possible to restore you to life.  that is not being respected as i see it.  we can expect it and need to understand it is a possibility that it won’t happen.  just remember that your family is going to do all they can to ensure this.
“The Needs of the Dying” by David Kessler
 

 

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Dr. Phil and euthanizing disabled adult children, this is why people fear euthanasia!

April 18, 2012 at 12:23 am (dr. oz, dr. phil, dying, euthanasia, how does it feel to die, living, living will, Terri Schiavo, the bad cripple) (, , , , , , , )

while we were gone the dvr was running.  on these long nights where sleep is more than elusive and even with 400 channels there is nothing to watch!  just before chris goes to the dentist i turn on the recording of dr. phil.  this was not your every day dr. phil.  for once he did not give any advice.  the only commitment he made was to say he would not want to live the way this mother’s adult children were living.  both of this woman’s children suffer from a debilitating disease.  it all began when they were very young, it gradually took them away from what most of us would consider a life worth living.  this is a question each person must ask and answer for themselves, what does it mean to be living?  video was shown of her adult son and daughter. both have feeding tubes and can not eat even puree food.  the bags are hung and over several hours each receives all the nutrition needed to sustain life.  the son has not eaten in 17 yrs and the daughter has not eaten in 5.  the mother asserts that they do not have any pleasure and may not even have pain.

the mother does not go to visit her children regularly as it is so upsetting to her.  this is understandable and until someone walks in her shoes please don’t judge her.  she was accompanied by her attorney, he was dr. kevorkian’s lawyer.  obviously he is an euthanasia advocate.  the problem here as i see it, she let the feeding tube be inserted when she had the option to withhold feeding for them.  now she wants to give them a lethal injection to end their life.  many would say she should have then and could now remove the feeding tube.  she doesn’t want to see them suffer any more. it may also be a factor that she is getting older.  does she worry who will care about them when she is gone?  they are blind, maybe deaf and have little brain activity if any.  one woman in the audience just kept saying “these are your children.”  well she knows that.

since most states consider ending your life with dignity illegal ,the only way to legally end their life is to withdraw the feeding tube. a slow torturous death at best.  to ask her to watch her children die this way seems cruel and unnecessary.  the same argument was made on the dr. oz show.  many disabled individuals see this as a slippery slope and after watching this show I have a new understanding of what mr. peace tried to share with me.  since the feeding tube was inserted at the time and there was full knowledge of what lay ahead for these loved ones it seems to have reached a point of no return.  this is not like teri schiavo since she had made it known to others what she wanted and her husband just carried that request to its end.  as children they could not say we do not want to live this way.  they depend on the kindness of loved ones and indeed strangers.  the law allows her to remove the feeding tube and yet not make the end easy and loving.

the question for me is if for some reason my own family was faced with the decision to take steps to keep me alive would they be able to say no?  even dr. phil made the observation he would not want to live under the conditions that these two people are.  why aren’t we having more discussion about this?  how do you have this discussion with those you love?  is there a segue to, do you think I have the right to end my life with dignity?  it is not an easy conversation and yet one that could make things easier.

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dr. oz, montel williams and the “Bad Cripple”

November 30, 2011 at 5:17 pm (assisted suicide, choice, death with dignity, dr. oz, euthanasia, how to die in oregon, montel williams) (, , , , , , )

it is my hope that anyone reading this will not misunderstand my intentions.  in no way do I advocate for assisted suicide. now, having said that I want to share that one of the comments left, was done so by William Peace and he has a blog named the bad cripple.  after approving his comment I sent Bill an email, he responded much more quickly than I expected and I will say that I was pleasantly surprised.  it would have been so easy to just delete his comment as he does not agree with me and my interpretation of the dr. oz show.  Bill was in fact in the audience that day. as he stated in his email he was offended, that the discussion had been one-sided and the audience had been whipped into a frenzy. those are his words and he gave me permission to use his name and the blog name.  if you are inclined to do so I recommend checking it out.  the more we listen to others and their perspective the better.  this country needs to wake up and have an open mind or we are never going to solve the problems facing us as a nation or as an individual. 

How To Die In Oregon is my ideal for showing the issues facing terminally ill humans.  Bill recommends that we simply deny life saving treatment if we want to end our life. he goes on to say (in his blog) it is more about how we live our life and his concern that there is a slippery slope to another holocaust where we as a society start just putting people “down” as they do not fit some standard of life.  sometimes a cigar is just a cigar! I would encourage a national and statewide vote on this issue.  why would I need to suffer even more by refusing treatment and thereby the indignities that it brings with it?  it is not my intent to ask someone else to assist me with this moral dilemma. would it be a comfort to me to have those I love accept this choice if it is the one I make? absolutely! would I ask them? NEVER!!!  this is about having the right to end one’s own life with dignity, this is not about putting someone else in harm’s way.  even if it were legalized is it moral?  the person choosing to die would not have to live with that decision. the person/persons that are left behind are the ones who will carry this burden. 

I can not say what I would choose as I am not at that point, I can say that it is my right as a human being to leave this life with dignity, I have tried to live a good life and will not leave this life any other way.  so please read at least one post by the bad cripple and get another perspective.  it is my firm belief that it is a personal choice, it would be comforting to know I could turn to a professional and say this is what I am thinking about.  I can’t do that thanks to the opinion of others who have made that choice unavailable to me.  this seems harmful in a major way, if someone could talk open and honestly with their healthcare provider they might not want to use the option of assisted suicide. left feeling abandoned and no one to turn to would seem injurious to someone already fragile. 

my mother had polio as a child and is truly crippled by it.  she has 3 daughters and growing up with her it never occurred to me that she would be better off if she took her own life.  that is one reason I don’t worry about the slippery slope.  we are smart enough to make the distinction between someone with a debilitating terminal illness and someone who is disabled.  maybe i just have more faith in my fellow human beings.

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thank you dr. oz and montel williams

November 3, 2011 at 8:43 am (assisted suicide, death with dignity, dr. oz, euthanasia, hope, montel williams) (, , , , )

finally an open and honest exchange about the right to die with dignity! dr. oz hosted a show with guests including Montel Williams along with everyday people who are facing terminal yet long-term illness. the audience included advocates for the right to die with dignity as well as opponents. one opponent was a man who has a neurological disease that has left him without any physical mobility and yet he is an advocate for the disabled and feels strongly that life is a gift from god and should only be ended by god.  a similar story was a woman who has been degenerating from the same disease for several years and is tired, feels her life is a living hell and wants to have the right to an assisted suicide since she can no longer take this step on her own.  it was heartbreaking to listen to her and her family talk about how empty her life is and to hear her plead and cry for a dignified ending to her life. she no longer feels her life is of quality and her dignity is long gone in her view.  for some her pleas fell on deaf ears, they felt their way is the righteous way and could not make room in their heart for the alternative or her right to that alternative. 

montel williams spoke of his unbearable pain and of sitting in his closet with an array of guns, his idea was to shoot himself and have it mistaken for an accident while cleaning his guns.  in the end he decided not to go do that to his children. many years ago when I lived in an apt a friend of mine was very upset because his ex-wife was getting ready to leave and take their son back to her home in southern california. for some reason he had the idea she would stay and they would work things out. he talked non-stop of his love for his son the whole time I knew him. this day we had all been at the pool, he got out and said “I’ll be right back” those were the last words his son would hear his father say to him. my friend went in to his apt and we heard a noise, I knew it was a gun shot and ran to the apt.  he had stood in the shower and blew his brains out.  I am not sure how his son who was 4 at the time was affected but I can imagine. as a parent it seems most cruel to leave that kind of legacy for a child to live with.  although montel was suffering I am relieved that one less child will have to live with that burned into their memory.  I could however respect if the alternative was available and he made that informed choice. who am I to decide whether or not someone elses life is worth living or that their pain is bearable? 

what can be confusing to me is so many say “less government” is what we need yet they want the government to decide if I have the right to end my life.  we can smoke which shortens our life and those around us, we can overeat, we can engage in dangerous sports and we can own guns that are misused and kill innocent people. we can not decide when we are suffering beyond our capabilities, decide to die with dignity vs. with tubes and diapers.  I am in no hurry to leave my life as it is now.  I have a will to live and be happy that some are not so blessed with. that does not give me the right to decide if I can do it they can too. Chris and I were talking today about this issue, we had watched the show together and one of the great things that will come from this show for many people is it will give them an opportunity to talk about a subject seen by many as taboo.  I appreciate that for whatever reason I seem to be on the long side of life expectancy while others go downhill so quickly.

it is rare for a show life dr. oz to risk this kind of show. some will be offended and he may lose viewers, I applaud him for taking this risk and opening up the dialog that needs to be happening in our society.  after watching and discussing this show we went to the nursery and bought some plants for spring blooming, yes I can talk about the eventuality of dying in the morning and planting bulbs that won’t bloom until spring:) it is a gift to honor both possibilities. we continue to plan trips that can’t always be taken just in case they can and plant bulbs that may not be seen just in case they are.  no one can give me hope, it is something I have by choice, just as no one can decide when someone else’s life has lost hope.

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terri schiavo and other tragedies

August 9, 2011 at 2:47 am (choice, death with dignity, euthanasia, family, how to die in oregon, living will, medical power of attorney, Terri Schiavo) (, , , , , )

as the world watched the tragedy of Terri Schiavo and what her husband and family went through, I decided then and there my family would never go through that. it was beyond sad and at times I felt such anger at the system that let her life and the tragedy of her death become a t.v. event and sideshow. this young woman had said to her husband and friends she would not want to be kept alive by artificial means and yet that is exactly what happened since she did not put it in writing. the anguish her parents went through hoping that somehow she would recover when several reputable neurologists stated that would not be the case here. her husband going through years of struggle with the same people he had once been family with. this was not an easy event for anyone involved, and those of us on the sidelines had some pretty strong opinions.

the one thing I hoped would come of this is more people taking care of business before it was too late for them. no family should have to go through this especially when it can be prevented. too many think oh I can wait I am still young, and healthy. well she was young and she thought healthy. beyond the group in Oregon and their fight to have the right to die with dignity are the cases like Terri’s. if she had just left her husband the medical power of attorney he could have made the necessary decisions and not fight with her parents, if she had left a living will her desires would have been crystal clear and no one would have been the bad guy making the decision to let her die with dignity.

don’t we all deserve to have some dignity left to us at the end? I certainly want to have my choices respected. more people need to understand the value of these documents and how easy it is to take care of now vs. letting your family deal with it during their most vulnerable moments. I understand for some it seems unnecessary, they will never be in that situation, but I am sure the young Terri didn’t think she would be either. we never know what is going to happen so accepting we are not safe from all things and that we are indeed frail human beings may be difficult but not as difficult as what the Schiavo/Schindler’s went through!

I would not have the energy today to take care of this so I am grateful to have it behind me and know that all of my family, whether they agree or not, know what my wishes are and that Chris has the power of attorney and my living will.  this Wednesday I have to have a ct scan of my  liver and possibly surgery to follow. for the past few weeks I have felt pretty good but the exhaustion is back along with the pain so we will see what happens. I am prepared for whatever comes good or bad. that is the best any of us can do. I don’t know whether to wish the growth is large enough to be removed, since this would ease some problems it is causing, or hope for it to be too small for removal. either way we will deal with it and be happy for whatever comes. we just celebrated our 16 anniversary, each milestone I am here for gives me such joy! now I am hanging on for the holidays:) I know they are months away however if I think how close they are it makes me feel like yeah I can see myself here for another thanksgiving, another christmas, another birthday for my dear grandson and son-in-law. I hope to continue to look forward, although looking back and remembering what a great time I have had makes looking forward even better! I wish for you all to take care of business like the living will, and take care of yourself, keep looking forward with anticipation and looking back with no regret.

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Fat Mike talks about killing his mother

July 3, 2011 at 8:53 pm (choice, death with dignity, euthanasia, fat mike, Uncategorized) (, , , , )

http://www.spinner.com/2011/06/30/nofx-fat-mike-la-pieta-euthanasia/ this is the link to Fat Mike talking about his mother’s death. my heart really goes out to this young man. for the rest of his life he will think of himself as the one who killed his mother. he did not in fact murder her, he did assist her in her own suicide. this is where the line gets blurred and it makes me so angry that he was put in this situation in the first place. if you believe in euthanasia or not, to behave so selfishly is beyond contempt to me. she was dying and wanted him to end her life for her. he being the good and responsible son felt he had no choice. she was suffering and he felt it was up to him to do as she asked. how a mother could put her son in such a position is unfathomable to me.

I happen to believe that individuals have the right to decide if they have the quality of life they can tolerate or not. I respect those that choose to live no matter what and I respect those that say this is not what I want for myself and my family. however, I do not respect anyone who would put their loved ones in a position that leaves them scarred for the rest of their lives. I can not imagine putting any of my friends or family in a position to even know that I have made that choice. the best possible outcome would be for no one to even suspect. in my case some might suspect as they know I believe in having that choice.

it is up to us ( the one with disease) to decide what we believe in and to choose how we leave this world. whether it be waiting for release or giving ourselves that release, I believe we must carry the burden of that decision. it is not a decision to make hastily, for over a  month I have been suffering yet did not want my family to carry the burden of worrying about me. patience has paid off and my kidneys have become stable. of course there are still serious health problems and I have more tests coming up. my liver is still not functioning as it should and now the right side of my heart is giving up. with the left side already dead this is not a good sign. we have been here before and as my husband likes to point out the drs have been wrong for 3 yrs.  I know they are not wrong given the statistics but people are more than statistics. we have a will that can not be denied.

if you are thinking of ending your suffering ask yourself, am I really accepting that tomorrow won’t be better than today? am I giving up all hope? there are so many more questions that we must ask ourselves even in our day-to-day life. the big one is if I choose to leave by my hand will I leave with grace and dignity or be selfish. this is your last act and I hope to make the decision the way I have lived, with love for others and respect for myself. at this point I still see hope for tomorrow being a better day. just sitting with Chris and watching t.v. or going to lunch with a friend, seeing my step-daughter for brunch. these are all times that I treasure and keep me here. love keeps me here, and I hope it keeps me here for a couple more years.

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