KATHLEEN HALL JAMIESON: And I bet the word "euthanasia" is not ever going to appear in a piece of legislation.
DREW ALTMAN: Somebody may make a decision that having voluntary counseling just isn't worth it.
BILL MOYERS: I don't know why they included that in the bill.
DREW ALTMAN: It was a Republican…
BILL MOYERS: Yeah, yeah, exactly. Now he's backing away.
KATHLEEN HALL JAMIESON: You know, I know why. The-- everyone who has worked with elderly parents or foresees a point at which they are going to have to be making these kinds of decisions has thought about end-of-life issues.
BILL MOYERS: I had my mother when she was dying, you know? I had to face that. You--
From Bill Moyer's Journal: August 14th, 2009
*************************************************
My Mother's Death
This September my mother would have been 100 years old, she died seventeen years ago at 82. My mother had an incredible life. Other than some minor illnesses, she was fine till her 81st year when she had her first stroke. We brought my mother home, fragile and unable to do all the things she did in her life that gave her joy and nurtured her spirit.
She had lived with us, my husband and children for about ten years. She was our eyes when we both worked. She made sure the children were fed, safe and that they had Yiayia right there to scold them, love them and guide them.
When she could, she cooked for us and we would come home to a wonderful meal. She bribed the children with Marie cookies, sang to them and took a great deal of joy and pride in their every move. She always had the needles in her hands, knitting or crocheting: " I don't understand not making something with your hands, why live if you do not make?"
Having a parent live with you is not always a bed of roses, but we all did our best. I have to give it to my first husband, he was very welcoming of her and never, ever made me feel bad that she was living with us. Maybe because they were partners in crime, they loved to watch football and smoke cigarettes. Even though he had stopped smoking, I think he liked having the second hand smoke.
The stroke caused her to lose all the function of her right side. She could not crochet anymore, she could not play cards, she could not bake, she could not clean herself, she could not go to the toilet, she could barely stand up and walk.
My work was very demanding and I would come at night to the kids and have to put my mother to bed. Each night, I would get her ready for bed after dinner, I would tuck her in and tears would stream down her face: "May God take me tonight my daughter, I don't want to be your burden, may God give me peace. " I would kiss her on both cheeks and assure her that it was not a burden, that I cared for her like she cared for me.
After turning on the baby monitor I would wish for her to not suffer, but I was not ready to let go of her. I was not ready to let go of those tiny hands, the hands that were always busy, never idle. The hands that soothed my childhood pains, the hands that scolded me and the hands that loved me and now loved my babies.
She suffered a second stroke and went into a coma. The doctors told us that she was in a "persistent vegetative state", permanent damage to her speech, memory, movement. A complete shut down. We had some options, I still cringe at the complexity of the options.
I knew her wishes. She did not want extraordinary efforts to sustain her, yet, when it was time to sign the papers, when it was time to make the decision to not feed her, we had no help from the doctors. How could I deny food, sustenance to my mother? How could I sign that paper?
I remembered her teary eyes; but I also knew how hard it would be for my own life if she continued living in this condition. End of life choices are complex.
In other times, people got ill and luckily died at home. Now, we have procedures, machines, techniques and ways of making people stay alive. Alive, only alive, but not living.
She was not religious and neither am I , yet I reached out to a young Greek priest. He told me that the church does not require that we keep life going. I had no one else to turn to.
Family members would come to see her, she lived for twenty days after we decided to not feed her mechanically. Each day I would sit with her, with members of the family, each day we second guessed our choice. Each day, I wondered if I asked all the questions. Should I have gotten more opinions? Maybe I could change the course? If her eyes flickered, I thought she was trying to talk to me. The nurses said: "That happens. " The doctor's stopped coming.
I wished that there was a set of people at the hospital who could have helped me make the decision and not wonder about motives, or doing the right thing. Yes, Sarah, a death panel.
Death is not simple anymore, neither for those dying or those who survive them. It's a complex medical decision and a much more complex ethical decision. You usually have to make it when you are not prepared.
My family and I are fairly well educated people and can ask questions and serve as advocates for our loved ones. What of the people who are unable to ask those critical questions. They are left to the four winds, trying to sort out an answer as to what path of treatment they should follow.
So, a political manipulation, a lie , a distortion, a ploy, will now block people from having a panel of experts, double check the doctors decision and help the family choose the treatment. Now, all we have is a five minute standing in a hallway catch the doctor while you can, consultation. Then, you are alone with the papers. No help in finding the right path of treatment.
Your loved one is an aside to the system. Maybe you did not understand everything the Doctor said, maybe, maybe, maybe. You spend years later wondering about how your mother died.
Ironically, that piece of legislation was included in the bill by a Republican who now is playing possum. This same ploy was used to attack the other attempt at health care reform.
I curse them for denying people some support and guidance during such hard times.
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Comments
My mother had a stroke when she was only two years older than I am now. She lived with different family members ,who were ultimately unable to cope with the changes in her, and when I finished law school, she came to live with me.
It was too late to ask her about what she wanted by that time. She lived with me for 4 and 1/2 years until one night, while I was away, she had a heart attack, fell to the floor and died with the handsome medics from the firehouse down the street all around her after she had managed to dial 911.
Your post made me weep because I put her to bed every night that she lived with me, just like you put your mother to bed. And I worried for all those years what I would do 'when the time came.' As it turns out, somehow I was spared the dreadful decision that you had to make.
But I didn't know what she wanted. She never told me before she became ill and the absence of that information tormented me. In law school I had studied end of life issues. It didn't help me. My very good education did not help me. I didn't have the experience or the knowledge that I needed. And so when she suddenly passed away, long before I was ready for her to go, I was a little relieved that I didn't have to decide after all.
Those narcissistic, lying Republicans have voted for similar measures a number of times. I can't even begin to express how angry it makes me that they are manipulating this provision in ways that frighten people who have yet to live through the experience of the death of a loved one. It kind of makes me wish I believed that St. Peter was waiting at the gates of heaven to reject their sorry asses and send them packing to where the company would be more appropriate to their character. Your mother had it right: " I don't understand not making something with your hands, why live if you do not make?" These guys make nothing.
Wonderful post.
A few years after she passed, I shared the story of having her at home for those final weeks with someone at a local hospital, and she asked me if I would volunteer to speak to families facing the same decision. I couldn't do it at the time for a bunch of reasons, but I often wish I had taken advantage of that opportunity. I guess I would have been part of a death panel of sorts had I done it.
I didn't understand the truth behind the "death panel" hyperbole until I read this post. And the people behind these lies should be truly ashamed. Thank you for sharing the story of your wonderful mother.
I have counseled people on end of life issues as an attorney, have a living will and a durable medical power of attorney, and have done research on end of life issues as an academic.
I am so sorry for the weight you still feel Stellaa. It's a very tough burden to bear.
denese
Most hospitals require an End of Life Directive, so that the wishes of the person may be followed. It helps some...but whenever there is some hope, there will be indecision and second guessing. Nothing is totally foolproof when there are the indeterminate "ifs".
As of this comment there is some improvement, so a bit of relief for us, and more strands of hope to hold onto.
Thanks for a well presented post on a particular problem. Rated
Unfortunately, veterinarians do this better than doctors at end-of-life discussions. They have to face the horrible end-of-life care decisions with people and their pets every day, and I think they do an admirable job. I'm not advocating euthanasia for people the way we do for animals (unless the person specifically requests it as we can in Oregon). I'm advocating for the conversations and the options that people get in a clear way from their vets when an animal nears the end.
We just had to put our dog down. She was beautiful and loved and like one of my kids. But we had many, many discussions with the vet about what her care would be, what we would and wouldn't do, how to keep her comfortable and happy. We knew that death was coming. We talked openly about how much time she had left. A "death panel" if you wish, between me, my husband, and the vet.
At the end, the vet was there reassuring us that we had done all we could, and it was time. As much as it hurts like hell to lose my dog, it was nice to hear from the vet that he respected our decisions, he thought we'd done the right thing, and that we'd done all we could reasonably do.
Why can we have these discussions with a vet and not with a doctor?
The current situation in Washington is so dreadful in light of stories like this. I too had to ask the doctor to take my husband off life support, and appreciated the small amount of counseling I received. All people who face this should be able to talk about it with doctors to alleviate doubt and guilt as well as comply with wishes of the dying. Many of us have to deal with these choices if we haven't already. Thank you for showing us the reality in such a touching way.
I am approaching the first anniversary of my mother's death. Within hours of her death I knew that I should be glad, not sad, that her illness was so fast moving that it stayed ahead of medical experts and of our ability to second guess our own decisions.
What angers me about the uproar over death panels is that people behave as if without death panels there will be no death.
Sometimes with hospice care the caregivers will leave enough morphine so the family can make a private decision. I do not know how they do this legally but have seen it happen twice. That seems more dangerous than an actual panel of healthcare professionals making such a decision.
Froggy, you are right, we get more time with the car mechanic and vet than we the doctor in making such decisions.
I hate that the bill is being dismembered piece by piece. We already have so many levels of death panels from the egregious insurance companies to end of life decisions as you so eloquently described. They are reality. But they could be so much better.
The insurance companies need to stay out of it. The families need help with the decision making with guidance from the doctors and support staff. I feel like a lonely fish in a fish tank, but I sent off a note yesterday to whitehouse.gov saying my piece. what happened to "yes we can"? I want death panels too and I want the public option left alone. Ack.
My MIL was a different story, she died in a different hospital, with a different set of doctors than the ones who had been treating her, and they ignored her DNR, twice. It was only after we got her transferred back to her regular facility with her regular doctors that we were able to let her go, as she had wished.
Unfortunately, with the current “debate”, I’m afraid that doctors like the ones who ignored my MIL’s wishes will become more and more common, and those like the ones who treated by dad will have to step back, lest they be accused of Killing Grandma.
Just had to get that off my chest. Lovely piece.
Rated.
I want to clarify, whereas the insurance companies decide on cost, I think the provision in the bill was for the family to seek advisory service on how to make the decisions and how to evaluate the situation.
The true "death panels" are the corporate bureaucrats who make the decisions based on bottom line and not some public policy which we may have at least a public comment period.
I was going through a similar situation with my father 2 years ago. He was independent nearly to the end, then a bad fall put him in the hospital and he required round the clock care afterwards. The only workable option was a nursing home. He went through many crises and bounced back and forth between hospital and nursing home. After several months of this, it was obvious that the hospital stays were not doing any significant good and just leaving him disoriented and scared. He was going into another crisis phase, and the nurse said they should send him to the hospital. I asked why, because it was not doing him any good. She said it was their standard procedure and requirement for an unstable, potentially serious situation, and that hospice care (and a DNR) was the other option.
My brothers and I discussed it and agreed that hospice was the best choice, as he was reaching end stage after years of struggling with Parkinson's disease. He died two weeks later.
I wish that more supportive counseling had been offered before we got to that point. It would have made the process more humane and compassionate.
To all of you who have not yet gone through an experience like this, I hope that you have better options when you get there.
Here's a couple pieces of advice for others from my own experience, as a child who went through this with both parents, as a hospice volunteer and as an employee of a hospital:
Have an Advance Directive! Sit your ass down and fill it out, no matter how young or healthy you are. We are all one car accident away from living in a vegetative state for years, with our loved ones unable to take actions that they're not sure were our wishes. The most important part of the AD is choosing who will make decisions for you. No matter what you put in writing in the AD as you wishes, hospitals will override that and follow what your designated decision-maker wants. If you have no AD, they use your legal next of kin, which may be a spouse unable to grapple with this choice, or a parent or child (as in your case) with same struggle. Closest isn't always best. Pick someone who can make tough decisions and talk to that person explicitly about what you'd want "if" -- and frankly it's not "if" but "when".
If you or a loved one is facing certain death and/or doesn't want extraordinary measures to maintain life, avoid going into a hospital if at all possible. Hospitals are made for one thing: intervention. It's very hard to stop the medical machinery there. Stay at home if possible and go through your MD to sign up for home hospice case, which provides the closest thing to a natural and compassionate and painless death as you can get in this country.
This can't be done in cases of sudden illness (like stroke or cardiac arrest) so also have a DNR (do not resuscitate) order in place for elderly relatives or people with lifethreatning illnesses who don't want any lifesaving measures in those events. Elderly people who have such written orders also need to wear DNR bracelets at all times, as otherwise paramedics and ER staff with resuscitate as they must do legally and morally (imagine trying to find paperwork in time to stop them).
Losing someone you love is always sad and wrenching. But preparation is one of the best ways to keep it from being even more difficult.
The "death panel" illusion arose from a provision for living wills. When my parents moved to a Continuing Care Retirement Community about 6 years ago, they filled out detailed living wills, with durable powers of attorney. They were clear about the actions they wanted, and the ones they didn't. They revised these documents yearly or if any change in health occurred. Later, when my father was in the skilled nursing center, we placed "Do Not Resusitate," and still later, "Do Not Hospitalize" orders. I blogged here on OS last fall about the decision not to re-hydrate him. It was hard, but we knew we were following his wishes.
Thank goodness his desires were clear. It made difficult times so much more peaceful for all of us!
But because of people like Palin, many people will be afraid to take these important actions -- filling out a living will and durable power of attorney etc. And more people will feel torn, as you did.
By distorting the purpose of that provision, people like Palin will add to the suffering of patients and families.
Wonderfully sensitive, infuriating piece, Stellaa.
Just a couple of weeks ago my next-door neighbor asked me to come over and advise him what to do about his wife, who the day before had been brought home from the hospital after a 12-week stay where she was diagnosed with a rare and fatal condition. She had been asleep for 12 hours after a bad night. He couldn't get any doctors to give him any directive advice over the telephone. After assessing his wife, I told him that it looked to me like it was very likely she would die soon and the hospital probably couldn't do more for her than he was already doing. Among other things, I advised him to prepare himself. This was a shock to him because the last he heard was his wife's remaining time could be "weeks to a year," and he had every expectation of a long period of nursing her at home.
Well, she died about 30 hours later. Instead of fretting and wondering and doubting himself, my neighbor had a peaceful and beautiful last day with his wife. Afterward, he came and thanked me profusely. He said I was the only person who talked straight with him, and because of that his wife's death was no more painful than it had to be. Then I had to think about how differently I would have acted had I been "on the clock." It's very disturbing.
Stellaa, you and your family were everything every family should be. You did your best. No one could ask for or expect more.
I hope this round of heath care reform actually works but it looks like the wheels have already fallen off.
It's a shame. We need it now more than ever and your story well illustrates the need for it.
She is fortunate to be in a adequate private facility, however, her existence is a living hell in my view.
After caring for her older brother who was an alzheimers patient in a nursing home, she stated to me that she would rather be shot than live under those conditions. She was horrified.
Its been 5 years and she remains incarcerated in both mind and body.
She is awakened every morning, fed then dressed and placed in her wheel chair. There she sits staring blankly into the abyss. She can't interact with anyone.
People cringe and throw the word euthenasia around as a political issue. It should be a humane issue.
Truth be told, I wish there was a "death panel" that could free this lovely women from the hell that she is living in.
You made the right choice.
In June of 1998 my daughter decided on her own that it was time to die (she was horribly ill with cancer). Three weeks later, on July 1st, she died in my arms. Since that time I've increasingly had to manage my parents' affairs. Dad finally died last year just shy of his 92nd birthday, after 7 years in dementia befuddlement in a nursing home. My Ma is now bedridden in one also, at age 87. She's told me many times she wishes she would just go to sleep and not wake up. She has a DNR in place. I sit with her nearly every day.
The twilight years quandaries are so many. Pop went down with heart valve failure in the fall of 1996. A valve job and bypass "saved" him, but he never fully recovered cognitively from the open heart surgery. Then, in 2001, the day after 9/11, he cratered in cardiac arrest. EMTs, unable to find a DNR (he in fact had one), paddled him back. He went straight from the acute care hospital to a nursing home.
Then in December of 2004 my Ma was going down with heart failure. A pacemaker "saved" her, but her life since then has been increasingly one of revolving door hospital and rehab unit stays. Since late 2007 she's been in private-pay nursing home care nearby (I'd moved them both to Vegas from Florida in 2007). I cut the checks -- about $6,300 a month.
"Death is not simple anymore, neither for those dying or those who survive them. It's a complex medical decision and a much more complex ethical decision."
Copy that. I am REALLY tired a lot dealing with this stuff.
I told my wife I wanted to go out driving the lane for a layup, LOL!
It's another thing, after a dnr, no heroic measures thing has been signed and no more nutrition, and more pointedly, no more hydration is given to your loved one. You can live a long time without food, but no water? not so much. Three or four days without water. I understand the whole hospice thing, and everything I read after the death of my father legitimized what went on, but still I wonder. I had other issues with that place, and even my father being there at all. I am sure that he did not protest that he was there so that he wouldn't incur the wrath of my mother. Since all of this was being paid for by my father it upset me that he just went along with it.
It became a moot point since he handily died within a week of placement at the nursing home/hospice unit/place. I wonder if he knew that after a week the medicare thing wouldn't have worked and his assets would have started the drain.
Whenever anyone asks me how MY day is going, I answer that ANY day that I can get out of bed and walk to the toilet under my own power, feed myself and do what I want to do, well that is a good thing. Shorten it? The walking to the toilet thing makes it a good day.
You're absolutely right. You're also a much needed sane and rational voice in terms of this debate.
But your story is beautifully told and a great way to get the message out, to buck this evil trend of propaganda.
I believe in making things with my hands too. I want to write about the old ethics I was taught, that stick with me. That would be included (my mother believed that as well. As did her mother.)