On Our Own Terms: Moyers on Dying in AmericaOn Our Own Terms


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  Program 4: A Time to Change (Page 1)

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Author Topic:   Program 4: A Time to Change
elizowen
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From: Brooklyn, New York, USA
Registered: Feb 2000

posted 08-24-2000 09:17 AM     Click Here to See the Profile for elizowen     Edit/Delete Message Reply w/Quote
The finale of ON OUR OWN TERMS profiles crusading individuals who offer palliative care to the working poor and the uninsured. As you watched the program, what was your reaction?

Dave
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From: B'ham, Al U.S.
Registered: Sep 2000

posted 09-11-2000 11:24 PM     Click Here to See the Profile for Dave     Edit/Delete Message Reply w/Quote
I just saw part of "On Your Own Terms". I understand in a couple of days a show will air on palliative care for the uninsured. I provide physical therapy for people at one of the featured palliative care units. I look foward to seeing the program and gaining further perspective on the issue. Thank you for bringing it to light.

Well, I just saw the episode. Those were some of my patients...my the perspective and the tears. What a joy it was to try to help them. This show was definately effective in making me appreciate my job and want to do more. I hope this show is as effective as I think it will be in leading to some very positive changes in the country as well as our troubled county hospital... "the only one in Birmingham that serves the uninsured".
I want to say so much more, but now it's more a matter of action. Good job folks!
For conversation: rdbcmt@aol.com

[This message has been edited by Dave (edited 09-13-2000).]

nenaearth
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From: Douglas, Arizona, USA
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posted 09-12-2000 08:39 PM     Click Here to See the Profile for nenaearth     Edit/Delete Message Reply w/Quote
It is about time!! For too long we have thought in terms of casting people aside. Burying them while they live. We for too long have caste aside all kinds of people that are suffering. Like the dying and the homeless and so on. We act as if they do not own part of this earth and are mere problems that are in the way. This phenomina pervails in our religions, our corporations, institutions, our transmittors of our culture the family and the media. I took care of my mother, then I was not able to. A rich member of my family took her as if a rag and dump her in a welfare institution. She was abused but thank God, for only a year. Then I believe a mericiful doctor pulled the plug on her when she finally got seriously ill. She was taken advantage by the family member and the system that place no worth in her. As if she did not exsist. She was wharehoused as if she was less then an insect. What I learned while taking care of her was if I gave her the benefit of the doubt she could achieve so much more then was professionally expected of her. I treated her as if she was human. I let her cry, perform and comfort her. However I will always criticise this system that is one of the richest in the world for allowing her to suffer even more. I will always feel guilty for not taking care of her in the very last year. However I was doing it alone without any support from anywhere.

Cheryl RN
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From: Sawyer, KS USA
Registered: Sep 2000

posted 09-13-2000 12:01 AM     Click Here to See the Profile for Cheryl RN     Edit/Delete Message Reply w/Quote
quote:
Originally posted by elizowen:
The finale of ON OUR OWN TERMS profiles crusading individuals who offer palliative care to the working poor and the uninsured. As you watched the program, what was your reaction?

Finally! An honest look at how health care really treats people. Fourteen years of Critical Care Nursing have taught me well that there are far worse things than dying. People have been kept in the dark about the horror of life support for years. It sounds great but what the family sees is not always how it looks. Why put someone through the torture when the end result is the same, death? I quit nursing in the Critical Care setting when I could no longer participate in "saving" everyone that came through the door. We cannot save everyone no matter how good the technology is. Why can't we let people die in as much comfort as we can provide? I have had honor of being present when people died what I call a good death. Comfortable as we could make them, loving family around and all good byes said before they died. I have also had the honor of holding the hand of someone that was sent to the hospital with the instructions to "do everything" because we can't stand to see Mom die. Mom didn't want "everything" but the kids did so the heck with the advance directive. (Dead people don't sue the hospital, live ones do.) The kids haven't seen Mom for a year but no matter, don't let her die. I consider it a honor to be present at such a personal time in ones life. I hope I offered comfort in some way even if it was just a touch to let someone know they were not alone. If you are poor, uneducated, or alone in the world you have so much more to lose. You must have someone to look out for your personal welfare in these days of HMO's and PPO's etc. To be at the mercy of the "system" is terrible. If we all can learn just one thing from this series it should be that we can offer so much more to dying people. Insurance should not matter, social position should not matter. The only thing that should matter is that we are human, and that makes everyone deserving of comfort care, what ever that entails. Insurance companys make such huge profits, government makes such wasteful choices. How hard could it be for us to put back the "CARE" in caregiving? This program should be mandatory for every health care worker in Americia. Every insurance company's CEO should have to be subjected to the same care options a uninsured person has during a health crisis. How fast do you think things would change then? Thanks to the crusaders who are daring to make a stand and change the system. I am standing behind you all the way cheering, and I intend to spread the word about this wonderful series! Thanks PBS and all that have shared. Your stories are like mine. I too have suffered the loss of loved ones, been at the mercy of the system and I hated it. I am battle weary but still ready to join the fight to change the system.

[This message has been edited by Cheryl RN (edited 09-13-2000).]

calldoc
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From: san diego, ca, usa
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posted 09-13-2000 02:34 AM     Click Here to See the Profile for calldoc     Edit/Delete Message Reply w/Quote
In San Diego, my medical group makes over 1,600 housecalls monthly to the very patients you are portraying so well. Please tell Rev. Moyers he has hit the mark.

The New England Journal published in May an article sponsored by NIH showing the cost of care in the last two years of life was about $37,000. By making comprehensive housecalls with doctors armed with lab, XRay, EKG, medications, etc. we average a total cost of $3,200 and give the American public what that want, and what you so ably portray: control and compassion during the final days of their loved one's life.
Keep this site open for a long, long time!
Dr. Bayne at gbayne@1800calldoc.com

sowens
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From: Illinois
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posted 09-13-2000 08:03 PM     Click Here to See the Profile for sowens     Edit/Delete Message Reply w/Quote
My Mother recently had a stroke that would have left her in a vegetative state. Since she had a living will she did not have a feeding tube etc. Only small doses of morphine for pain when she "seemed" uncomfortable. She lived for approximately 2 weeks. She literally starved to death. It was horrible to watch. When insurance would no longer cover her hospital stay we were told she would have to be moved back to the nursing home. She died the second day after being transported back to the nursing home. My question is this; If the idea is to make the patient more comfortable but not prolong the inevitable then why turn a patient every one to two hours to keep the fluids from building up in her lungs? Who determines what is exceptable and what is not? How humane is it to allow a person to starve to death...and could medication have been administered sooner at the hospital so she did not have to be moved back to the nursing home?

This has been very difficult on my Daddy (84 yrs old - 62 yrs of marriage). Could this have been dealt with differently .... other options? Daddy has trouble sleeping at nights, often waking up sobbing, for many obvious reasons but what about the not so obvious reason, such as "Is this what I have to look forward to?" Can I give him any kind of assurance?

Julie1961
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From: Woodbridge, VA
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posted 09-13-2000 10:46 PM     Click Here to See the Profile for Julie1961     Edit/Delete Message Reply w/Quote
Such an excellent program. !!!I hate the fact that we cannot offer assistance in the home. The nursing homes are so depressing!! I would like to see more boarding homes and I hope that eventually the bureaucrats will get on the ball and realize its cheaper to pay for care at home then at a nursing home. Cmon..give these caregivers some assistance!! My experience as a hospice nurse is these caregivers are so burnt out and so exhausted. If they had some kind of full time SITTER or NURSING ASSISTANT in the home, they may be able to get some sleep at night. They may be able to go out shopping. The nursing home is not any kind of quality for someone's end of life care. They don't have the properly trained staff. They are so short staffed. And, the biggest complaint I hear is that the patients are not receiving pain control on a timely basis. This is not fair!!

Kimberly
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From: Columbus, Ohio
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posted 09-13-2000 10:51 PM     Click Here to See the Profile for Kimberly     Edit/Delete Message Reply w/Quote
I have viewed all four segments of the series and I am grateful for the honest, insightful coverage of a difficult subject. My father died of kidney cancer in 1998 and was cared for by my mother at home, with incredible assistance from Hospice of Coshocton County Ohio. For a rural county, this hospice organization was incredible. The series highlighted an important part of hospice care--relating to patients on a human level (aside from critical help with meds, etc) to alleviate fear and allow the patient to ask tough questions about the physical aspects of dying. My father confided in our hospice nurse, quietly sharing his fear with her. I hope this series will educate doctors, nurses, and everyday folks about options available to ensure death with as much dignity and tenderness as possible. I know that Hospice is a beacon in the dark night of fear for many dying patients and their bewildered families.

nancileed
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From: Clearwater, Fl
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posted 09-13-2000 11:02 PM     Click Here to See the Profile for nancileed     Edit/Delete Message Reply w/Quote
Thanks for a very informative program. Being the caregiver to a terminally ill husband, this has answered many questions. We have been through a horrible Nursing Home Experience and are so blessed to have the very capable hands of Hospice with us now. What a caring and compassionate group of people we have encountered in the short time we have been with them. The Hospice community should be forced into the Medical School Programs to teach compassion and end of life care. Though my husband is dying he still is a human being that deserves the best of care and to be made comfortable not to be told there is nothing more that can be done and shuffled out the door. I am sure the Medical Profession as a whole has to deal with death almost on a daily basis, but as we come to this threshold it is new to each of us. To be told as the doctor walks out the door, there is no more that can be done medically, is a horrible experience.
The lack of compassion astounds me.

Judy Petersen
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posted 09-13-2000 11:02 PM     Click Here to See the Profile for Judy Petersen     Edit/Delete Message Reply w/Quote
This program has been amazing and so needed. As someone who provided care to a friend who chose enough drugs to be comatose when the pain got too bad AND had visiting nurse and MD care providers who made that possible, I was delighted to see PBS letting the public know this is possible. However, the one thing that bothered me was those who wanted to die rather than be embarrassed by the care they needed. I kept thinking what the world would have missed had the younger Stephen Hawking (ALS sufferer) decided to suicide rather than be spoon fed. His story tells me how we ALL have a responsibility to develop our ability to participate in and contribute to the world and others -- and, as long as we have effective pain control, to continue to contribute and participate.

patbird
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From: Ft. Lauderdale Fl.
Registered: Sep 2000

posted 09-13-2000 11:22 PM     Click Here to See the Profile for patbird     Edit/Delete Message Reply w/Quote
As a 10 year medicaid biller, for problem accounts, for a 38 hospital chain, with hospitals in 8 different states, THANK YOU! Thank you to all who have been there for someone. Thank you for your great and even smallest of chesters, that no one will ever know about, Thank you.
I deal daily with patients, caseworkers, care givers, case managers, office workers, doctors and nurses and medicaid billers. I also see the results of how our system has failed so many.
My main concern is always for the patients and family members. How do they feel? Are they happy? What can I do? (I call it the Lord's work). Most people seem to feel so alone, alienated, and giving up hope. I try to let people know I care about them first. I listen, I care, and I love. These people feel so alone and they're not! They are all going through their individual struggles, together. The welfare systems have taken middle class families into destitution and bankrupcy, in some cases, before inadequate care was then provided.
Stronger community support groups, more church, school, and civil involvements can bring together ideas for betterment. Maybe better government support for private or family caregivers would help. I don't have all the answers, I can only hope these words can help inspire or motivate others too.
Every terminal patient I have ever spoken to in 10 years all believed they would go home at death. All expressed beliefs in God. As a Christian, I too, believe we will get to return home to God. Death may be the best part of the journey of life. Shouldn't our priorities be: being the best and most we can be for our loved one's and each other. Savoring and living life while alive, not worrying about whether you can afford to die.
The hospital industry pays me well to worry about a constant case load of over 300 patients in my computer file. I let them all know that. I try to lighten the financial worry burden and let them know they are not alone. I tell them they are connected, through me, to over 300 or 400 other people going through the exact same thing! Hang in there and don't give up. I send cards when I can't always call. Everyone seems to agree that St.Peter at the pearly gates is not going to ask for your medical bills and whether you paid them, before he will let you in. I'm here to worry about that for them and 90% of the time, I get the bills paid for them. The people are still more important than that all mighty dollar.
May the Lord be with all of you through your struggles. If anyone knows how I, or we, can do more, please tell Bill Moyers to get it on PBS! The responses to this really is great. We are not alone and maybe some how we can all figure this out one day. Take care all.

christina
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posted 09-13-2000 11:35 PM     Click Here to See the Profile for christina     Edit/Delete Message Reply w/Quote
I posted my story in the outreach folder instead of the viewer's reaction. Please forgive me.

But I support programs of this kind that educate people to let them know what is available to them and it also gives people some control over their lives, which is something few of them feel.

jimmie marshall
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From: Malabar,Fl,USA
Registered: Sep 2000

posted 09-13-2000 11:39 PM     Click Here to See the Profile for jimmie marshall     Edit/Delete Message Reply w/Quote
This is an excellent portrayal.

Our mother, Ruth D. Sikes Marshall, went on her final journey on April 15, 1998.

Mama had a grand-mal seizure on Jan 27,1998, and was taken to the emergency room (after obtaining permission from our HMO). During her admission to the hospital we were advised that Mama was not eating enough to sustain life and that we would have to make a decision (within two weeks) as to whether or not to put her on a feeding tube.

Mama had always stated that she did not want any type of life support ... if the Lord was ready to take her home, it wouldn't matter if she was on life support or not. My sisters and I abided by Mama's wishes.

In February, our family physician pointed out that we were not accepting what was happening to Mama. This opened our eyes and we took Mama home on February 28, as that is where she wanted to be.

We arranged for hospice care and was told not to force Mama to eat. Her body was shutting down and knew it didn't need any food. Some would think she was starving to death due to not eating. This was not the case as explained to us by our family physician. She was not dying because she was not eating, she was not eating because she was dying.

Our entire family, relatives, and old-time friends were able to spend quality time with Mama during her final time on earth.

We celebrated life ... life on earth and the new life that was to begin for Mama.

This time was the most wonderful, yet heart-weary time, that I have ever experienced. Mama continued teaching her children (4 daughters), 11 grand-children, 28 great grand-children, and 3 great-great grand-children right up to her departure.

She let us know that she was ready to go home ... but "It's hard to die." Mama, did not mean that it was a hard time of suffering ... but it was hard to die when you were so anxious to make the trip. She would tell us, "I'm going at 5PM." When she didn't go, her response was "I guess my work's not done yet." We told her this was one thing she couldn't control, that she had to let go and let God.

During this time, the Lord gave me the words and music to two songs ... inspired by our time with Mama. One is about a train ride to heaven that Mama took us on one night,"let's go, let's go! come on, come on!". The other was "He wrote the words deep in my heart" when God reassured me that everything would be all right, He knows our needs and hears our prayers.

The hospice service we received was outstanding. In fact, told our CNA "When you got Annie, you got it all!" She told Annie that she was putting her in charge of her "girls."

I encourage any one facing the final days, weeks, months of a loved one to support the hospice movement. If there's not one in your area petition your health care organization and physicians to implement this program.

We have an excellent one in Health First Hospice and our family has established a "Ruth D. Sikes Marshall Memorial Earth Angel Award" to recognize exemplary service by a hospice employee on a quarterly and yearly basis based on service to our community members and on letters hospice receives.

Our Health First Hospice requested to use the songs the Lord gave me in their memorial services, and I readily granted this request.

I am currently writing the story of Mama's journey and undertook the writing of this after telling Mama's story and being urged to write it. I submitted a draft of the first few chapters to the person who encouraged me to write it and was told that it changed her perspective on dying.

This person is Valerie Davis-Holloway, VP of Community Relations for Health First, Inc. Hopefully, this will be published and used within the hospice program and made available to patients and families who are starting the final journey (or the final journey of a loved one).

Chili
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From: Reading, PA, USA
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posted 09-13-2000 11:56 PM     Click Here to See the Profile for Chili     Edit/Delete Message Reply w/Quote
The Series and the post-program discussions were truly of value by candidly discussing and showing the "last unspeakable" question.

I was especially interested in the discussion following the final program. The discussion of what happens, where do you go after dying, was especially pertinent.

On hearing the Rabbi, and the Buddhist teachers, I was struck with the applicability of Garcia-Lorca's writing in "Going to Toledo":

A student accompanying Garcia-Lorca asked "Master, are you afraid to die ?"
"Were you afraid to be born ?" asked the master.

IMHO we are the stuff of which stars are made, when we pass we return to that elemental beginning, to return, somewhen and as something in the reaches of Infinity.

Chili

RITony
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posted 09-14-2000 12:06 AM     Click Here to See the Profile for RITony     Edit/Delete Message Reply w/Quote
I happened upon this program by accident and the overwhelming sense of agony it brought back is beyond words. My wife passed away at an inpaitent hospice center here in Rhode Island after a two year battle with NHL. It was two days after her 37th birthday. Two bone marrow transplants in Boston, countless radiation and drug therapies, etc... Absolutely kicking and screaming the whole way... I think our last two weeks in the hospice center were the best we had in those two years. Although my 6 and 8 year old kids barely remember their mom after only 3 and 1/2 months, even they remember the really nice people at that last hospital where mom stayed. My deepest admiration go out to the "angels on earth" who somehow have the ability to work in our local hospice program and those around the country. I know that my family was blessed with our hospice experience. I can only hope that television programs such as this can help raise public awareness of just how important hospice can be. Thanks for the powerful program.

We miss you betsy ....

clouise12
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From: washington
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posted 09-14-2000 02:26 AM     Click Here to See the Profile for clouise12     Edit/Delete Message Reply w/Quote
As an employee of a state Medicaid program, and a life long government bureaucrat, people must realize that it will take a legislative change driven by absolute shrieking outcry from the populace to the Federal govt to make the necessary changes in the healthcare system. But those changes will cost money. And if you hold stock in a healthcare system, or pharmaceutical company, or invest through an insurance company, you are contributing to the stalemate. Those bureaucracies are not going to change a monitarily sucessful system. The only way to make those changes is to support government making those entities change, if you just realize that the government is us -we elect those who make these decisions. And realize that it only takes one person (one committee chairperson, one president, one judge) to say yes we can or no we can't.
You have to be willing to fund change and that means through taxes. Taxes are collected for many reasons, some good, some not so good. If every single person in the world said "I will be personally responsible to prevent the suffering of my neighbor" taxes wouldn't be necessary. But for all of us who don't have the time, or the stomach, or the interest, or think that it's the other person's fault that he or she is in this situation, we abdicate our responsibility. On the front line level, where I work, we try our darndest to make the system responsive to the incredible medical complexities of poor people's lives. But if one person in a position of power in the legislature (a committee chairperson) says no, or if my boss says no, or the head of the agency says no, or the governor says no or the state attorney says no. Then nothing happens.
You know what scares me the most? How do I prevent this from happening to me?

dogwoodnana
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From: Carriere, MS USA
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posted 09-14-2000 03:49 AM     Click Here to See the Profile for dogwoodnana     Edit/Delete Message Reply w/Quote
I am a registered nurse, spent a year and 1/2 through NOv '99 caring for my mother and working full time to support a husband with a quadruple bypass. I must keep working till I drop because the people and the system and the family and the husband will not be there for me to pull me thru the loopholes and see that I take my medicine, stay free of pain, and my butt gets washed, never mind shampoo and mouth care. I work in a Louisiana nursing home part time. The state is raising the patient -caregiver ratio all the time to justify reimbursement. VOTE! not just the president- but especially local officials and state hospital boards and the ones who appoint them. Get politically active or we will be facing long painful lonely journeys to death, all of us, this boomer generation.
And most important, teach love, and care for one another, not to avoid sick ones, but to minister to them, not to be afraid. We must rely on each other.

David Greenspan MD
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From: Mt. Holly, NJ, USA
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posted 09-14-2000 11:27 AM     Click Here to See the Profile for David Greenspan MD     Edit/Delete Message Reply w/Quote
You raise very important questions. What is palliative or comfort, how is that decided. So often we cannot know, or at least don't know... especially when patients are unable to tell us how they feel. What might seem comfortable for one may be uncomfortable for others...

Would euthanasia have been better? This is such a slippery situation as well... again, who would you trust to decide?

Hopefully, the conversation that has begun with this program will go on... and some policy initiatives will begin to address questions raised by it.

quote:
Originally posted by sowens:
My Mother recently had a stroke that would have left her in a vegetative state. Since she had a living will she did not have a feeding tube etc. Only small doses of morphine for pain when she "seemed" uncomfortable. She lived for approximately 2 weeks. She literally starved to death. It was horrible to watch. When insurance would no longer cover her hospital stay we were told she would have to be moved back to the nursing home. She died the second day after being transported back to the nursing home. My question is this; If the idea is to make the patient more comfortable but not prolong the inevitable then why turn a patient every one to two hours to keep the fluids from building up in her lungs? Who determines what is exceptable and what is not? How humane is it to allow a person to starve to death...and could medication have been administered sooner at the hospital so she did not have to be moved back to the nursing home?

This has been very difficult on my Daddy (84 yrs old - 62 yrs of marriage). Could this have been dealt with differently .... other options? Daddy has trouble sleeping at nights, often waking up sobbing, for many obvious reasons but what about the not so obvious reason, such as "Is this what I have to look forward to?" Can I give him any kind of assurance?


carolsel
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From: Sitka, AK
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posted 09-14-2000 12:41 PM     Click Here to See the Profile for carolsel     Edit/Delete Message Reply w/Quote
quote:

On hearing the Rabbi, and the Buddhist teachers, I was struck with the applicability of Garcia-Lorca's writing in "Going to Toledo":

A student accompanying Garcia-Lorca asked "Master, are you afraid to die ?"
"Were you afraid to be born ?" asked the master.

IMHO we are the stuff of which stars are made, when we pass we return to that elemental beginning, to return, somewhen and as something in the reaches of Infinity.

Chili


All the postings here are so wonderful and poignant, but I was especially taken by your above comments, Chili. Over and over again, birth and death come together in these discussions as well as in my own experiences in being with people as they die. They are clearly, in my mind, intrically (sp?) interwoven. Your statement in your next paragraph truly fits my belief too. You have put words to my feelings. Thank you so much.

To each of the rest of you who shared your thoughts and your pain on this thread, I send you my thanks and my blessings. Please take care. Your grief and pain will heal. The memories of your beloved person will go on and on and over time they will become only the good memories. This has happened with me regarding the very difficult death of my mom in 1990 (I was her primary 24/7 caregiver-so very hard, even with respite and hospice) and the very sad and hard (For me, not her) death of my sister in 1991. You come to understand that you did the very best you could and your loved ones know that. You must forgive yourselves any 'transgressions' you feel occured surrounding those deaths. There is no blame, only love from those souls. They know and they understand to a level we won't know until we join them. Take care and Peace to each of you. Carol

Balice
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From: Seattle, Washington, USA
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posted 09-14-2000 01:18 PM     Click Here to See the Profile for Balice     Edit/Delete Message Reply w/Quote
Julie -- I loved your comments. Caregivers also need to remember that even though their loved ones may balk at accepting help from "strangers", when they actually do everyone benefits. My parents were resistant to outside help, but they love their COPES workers and it is wonderful for them to have that interaction on a daily basis. We can't care appropriately for those we love when we are so sad, stressed and simply tired out that we have no energy to give them.
quote:
Originally posted by Julie1961:
Such an excellent program. !!!I hate the fact that we cannot offer assistance in the home. The nursing homes are so depressing!! I would like to see more boarding homes and I hope that eventually the bureaucrats will get on the ball and realize its cheaper to pay for care at home then at a nursing home. Cmon..give these caregivers some assistance!! My experience as a hospice nurse is these caregivers are so burnt out and so exhausted. If they had some kind of full time SITTER or NURSING ASSISTANT in the home, they may be able to get some sleep at night. They may be able to go out shopping. The nursing home is not any kind of quality for someone's end of life care. They don't have the properly trained staff. They are so short staffed. And, the biggest complaint I hear is that the patients are not receiving pain control on a timely basis. This is not fair!!

julewind
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From: Eugene, Or, USA
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posted 09-14-2000 01:21 PM     Click Here to See the Profile for julewind     Edit/Delete Message Reply w/Quote
No training for medical students on how to help people die? I found this to be the most shocking statement of all in the entire series.

My partner is a physician trained in The Netherlands, and we have often commented on how medical training in the USA skips nutrition (often a one-week course here as compared to an integrated curriculum there) and other social issues. She had to attend AA meetings and read their Big Boook; she had to attend group therapy for a year to learn to talk to patients about emotional issues; and she had training in Kubler-Ross grief issues. In this country we woefully undertrain the front line providers in death; denying them useful tools to help their patients, all whom will die eventually.

Add to this the cost of medical schools here ( many hundreds of thousands can be spent) compared to the $25 per term my partner had to pay to get her degree. That means that medical school is often out of reach for caring compassionate people who would be the kind of doctors we would all want at our deathbeds. Then there is the absurdity that this country restricts doctors from other countries from practicing here. My partner had to complete a second residency here to practice, despite her years of experience and incredible multi-lingual skills in four languages.

I do appreciate the portrayal of doctors and other health caregivers that the series showed. The woman doc in Portland doing euthanasia was fabulous, as was the last doc in Birmingham. When I die, I hope someone like one of these marvelous people can be with me.

rruss
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From: San Francisco, CA
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posted 09-14-2000 04:26 PM     Click Here to See the Profile for rruss     Edit/Delete Message Reply w/Quote
I really don't know where to begin.

After watching the last episode I feel like the castaway who's been scouring the horizon every day to see if today might be the one in which help arrives.

I was involved for appx. 8 years in San Francisco as a community volunteer working with people living with HIV/AIDS and what I've seen and bared witness too is still quite raw and painful for me. The physical and emotinal suffering that many feel as a result of coming into their end days is difficult enough. Mostly I believe, because there is actually little - if anything - one can do to change the situation except to try to make the folks as comfortable as possible and be present with them. What was equally excruciating for me was in seeing just how unresponsive the 'system' (i.e. HMOs, insurance providers, employers, state and federal agencies, etc.) was in failing to address even the most fundamental and rudimentary needs of folks at this point of their lives.

B. Moyer's has in a wonderfully subtle way, indicted those very targets by fearlessly showing just how unresponsive large, Byzantine organizations like HMOs and for profit hospitals can be when the bottom line remains profit or fiscal/budgetory constraints over the needs of society.

I'm just praying that the series becomes a point of accretion where the real, substantive issues of health care in America will take hold and people-regardless of political alliances-will finally realize just how messed up this country's system of medical apartheid really is.

maxurg
New Member

Posts: 1
From: tucson,az,us
Registered: Sep 2000

posted 09-14-2000 09:03 PM     Click Here to See the Profile for maxurg     Edit/Delete Message Reply w/Quote
quote:
Originally posted by David Greenspan MD:
You raise very important questions. What is palliative or comfort, how is that decided. So often we cannot know, or at least don't know... especially when patients are unable to tell us how they feel. What might seem comfortable for one may be uncomfortable for others...

Would euthanasia have been better? This is such a slippery situation as well... again, who would you trust to decide?

Hopefully, the conversation that has begun with this program will go on... and some policy initiatives will begin to address questions raised by it.


[This message has been edited by maxurg (edited 09-14-2000).]

rscalise
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Posts: 1
From:
Registered: Sep 2000

posted 09-14-2000 09:36 PM     Click Here to See the Profile for rscalise     Edit/Delete Message Reply w/Quote
I just finished watching this last segment of this amazing series. As difficult as it was at times to watch, I am so glad that I did. First, PBS, and Bill Moyers, you are to be commended for this outstanding piece of work of humanity. We need, desperately need, to talk about dying, dying with grace and dignity, and peace and without pain. The powerful testimonies of the individuals interviewed, patients and caregivers, caused a multitude of profound feelings for me, from great sadness to wonder and amazement. This last part of the series, was for me so deeply moving, I cried through much of it as I saw just how deficient our medical system is for providing care for the dying, especially the dying poor. I also cried because of the sheer goodness and compassion displayed over and over again by the many people profiled. I cannot find adequate words for the incredibly remarkable doctors, nurses, and caregivers that were all featured throughout this series. You are performing the most noble tasks that I believe anyone could do, accompanying the dying through outstanding obstacles, i.e. lack of funding for meds, daily care etc... and providing spiritual, social, physical and mental nourishment for not only the dying, but all those who care for the dying. And thankyou to all the patients and their tremendous families and friends who willingly allowed tv cameras to come in to tape some of the most intimate and difficult times of person's lives. You are all advocates for making our health system better, creating the awareness necessary for public policy to change.
Perhaps, my reactions to the series are all the more deepened, due to my own grandmother's suffering over the past 5 years. She suffers from Alzheimers and my mother, an RN, has been the main caregiver for her the past 5 years. During this time also, my grandfather became ill and died of cancer last year. It has been a difficult time for my family, especially my mother and father. I have seen the strain it has caused on them and our family. We have been blessed with a wonderful aide who comes 5 days a week for 5-8 hours a day. However, in reality this is not enough as my grandmother is really incapacitated. I know we are certainly not alone, as we care for her. And the reality is that as our aging population grows in numbers, so too will the numbers of people needing care. Will this country be ready to deal with the ever increasing numbers of people needing care? We must push our legislators to act, to insist that our sick will be cared for in humane and life-affirming ways. We are not doing a very good job at it overall, as Dr. Lynn expressed. Thank you Dr. Joanne Lynn for your much needed words. Let us hope that your words and those of others speaking on behalf of the dying and their families are heeded.
Again, thank you pbs for your excellent series. Keep up your important work!!!

vul
Member

Posts: 2
From:
Registered: Sep 2000

posted 09-14-2000 09:49 PM     Click Here to See the Profile for vul     Edit/Delete Message Reply w/Quote
I had tried to create a new topic
(see middle text)

"dehydration as protective"

as the pbs celebrity doc in her talk to nursing home staff
is seen claiming this... but this 'ultimate bbs' interface
stopped me at submission (after composition).

P.S.
(sorry about the roughness of this comment- it will continue to be edited, the postscript is for the text that follows it)

The responded to comment has several aspects-
the part about surviving victims, in her case
the spouse, deserves a seperate discussion.

It reminds me of the research done on the effect of abortions on the surviving parents....

*************

I didn't have captioning on the TV I watched this on last night- did that soundbite from the indoctrination of nursing home workers even get transcribed?

"dehydration can be protective"

These people who work in nursing homes have little contact with the highly educated. I find it most offensive that a physician is allowed to speak with apparent authority without agreeing to goto prison at least in the place of those who follow her advice.

This show, although it didn't provide the teaching, quite deliberately obviously, has had me learn today about the primary hoax.

THAT something is not 'unconstitutional', doesn't make it legal!! The claim that terminal sedation is legal,
that prevents the patient from eating and drinking for his or herself or has assisted nutrition/hydration not given or
discontinued for example, appears to be false on it's face. Such sedation is offered to nonterminal patients, it's defined as giving additional narcotics until sedation is effected, but of course the absence of the intention to kill those patients has very careful hyrdration and nutrition provided! (burn etc. victims who are put under while they heal because the pain is so unlocalised and not relievable while awake)
Pain can be relieved in many of the 'designated terminal) patients that are being killed in this manner without even sedating them at all. Oregon has passed a legal law, but everywhere else we still protect from this type of execution as the successful prosecution in Utah has demonstrated.

The people who do the killing have the protection of the Jury. It seems that even channel 13 believes that that is not good enough. What the agenda appears to be is about creating careers, that are 'quasi medical' in nature. White coats, trumped up self importance, but without the ability to do poorly- for every death is a success, and so far we all die.....

If you want to engage in this practice, at the very least you should risk being put in prison. Check the facts like you would if you where at risk of being put in prison for much or the rest of your life, if not executed likewise yourself- as in most of this country you are. And we need more Dr's not less living/working among our inmate populations........

quote:
Originally posted by sowens:
My Mother recently had a stroke that would have left her in a vegetative state. Since she had a living will she did not have a feeding tube etc. Only small doses of morphine for pain when she "seemed" uncomfortable. She lived for approximately 2 weeks. She literally starved to death. It was horrible to watch. When insurance would no longer cover her hospital stay we were told she would have to be moved back to the nursing home. She died the second day after being transported back to the nursing home. My question is this; If the idea is to make the patient more comfortable but not prolong the inevitable then why turn a patient every one to two hours to keep the fluids from building up in her lungs? Who determines what is exceptable and what is not? How humane is it to allow a person to starve to death...and could medication have been administered sooner at the hospital so she did not have to be moved back to the nursing home?

This has been very difficult on my Daddy (84 yrs old - 62 yrs of marriage). Could this have been dealt with differently .... other options? Daddy has trouble sleeping at nights, often waking up sobbing, for many obvious reasons but what about the not so obvious reason, such as "Is this what I have to look forward to?" Can I give him any kind of assurance?


[This message has been edited by vul (edited 09-14-2000).]

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