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


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Author Topic:   Program 2: A Different Kind of Care
elizowen
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From: Brooklyn, New York, USA
Registered: Feb 2000

posted 08-24-2000 09:16 AM     Click Here to See the Profile for elizowen     Edit/Delete Message Reply w/Quote
Part two of ON OUR OWN TERMS reports on the evolution of palliative, or "comfort," care and its emphasis on patients' psychological,
emotional and spiritual well-being. As you watched the program, what was your reaction?

gblane
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From: Little Rock, AR USA
Registered: Sep 2000

posted 09-11-2000 09:42 PM     Click Here to See the Profile for gblane     Edit/Delete Message Reply w/Quote
The television series is really wonderful. However, in my experience in caring for someone who died of colon cancer several years ago, we did not have situations that worked out so well as what I see on TV. Our oncologist was too busy and unavailable; we had no idea what the word "palliative" meant; and psychological counseling was openly discouraged. Our hospice was terrible, they all seemed anxious and overworked, and pushed drugs too much. Just wanted to present a different side! We finally found a wonderful family doctor who supported us through the experience.

LuvLee
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From: Winnipeg, Manitoba, Canada
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posted 09-11-2000 10:38 PM     Click Here to See the Profile for LuvLee     Edit/Delete Message Reply w/Quote
So absolutely evocative of a woman I worked with, NancyLou, who died of cancer July 31st, 1999. She put up a valiant fight, and hung on until her husband was able to let her go...I shared many hours, laughter and tears, with Nancy as she faced the end with tremendous dignity and humour. Being a participant in Nancy's death, was a tremendous privilege that she shared with me, and her death lead me to my current course of studies, which is social work with a specialty in Palliative Care.

I am sitting here with my face bathed in tears, not sad, but intensely aware of Nancy and all she gave me.

DLRoberts
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From: Elkhart, Indiana, Elkhart
Registered: Sep 2000

posted 09-11-2000 10:39 PM     Click Here to See the Profile for DLRoberts     Edit/Delete Message Reply w/Quote
I found series 2 very interesting and wished that pallative care would have been an option. Pallative care was only done in regards to his chemotherapy. My brothers insurance company did not allow hospice to be involved when a patient has chemo even if it is for a pallative reasons. Hospice would have been such a wonderful option for my brother but more importantly for myself who was doing the caregiving. I felt completely alone even though I had a sister who would come and stay a few hours while I got away. Not all families talk about what is really going on; therefore, no one talks about it. It's like the elephant in the room. My brother never gave up hope and fought every inch of the way. And why not? He was only 47. His whole life was ahead of him to be cut short by a deadly noncurable disease called Glioblastoma Multiforme---brain cancer. My biggest problem with being in the hospital is too few nurses for the proper care for patients. When a loved one is in the hospital and unable to speak for himself (he had Asphasia) you were at their mercy. Many, many times I would come in and his dinner tray would be on his right side. He was left handed and had very little use of his right side. I would tell them over and over but people would forget. Then you get them to remember that and they move them to another room or floor and you have to start all over again in the reminders. I could never understand why that important information did not follow them with their charts. I guess it makes too much sense to do that; therefore, it doesn't happen.
Thank you again for this enlightening series on Death and Dying.

mducote
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From: San Antonio, Texas, USA
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posted 09-11-2000 10:53 PM     Click Here to See the Profile for mducote     Edit/Delete Message Reply w/Quote
I think this was a great show but it doesn't seem too realistic to me. I think you should show the dark side of medicine which is the Secure Horizon's case manager forcing very sick people out of the hospital prematurely because her HMO says it should be that way. I think show was great and I have a lot of respect for health care workers who treat there patients and families with that kind of understanding. But I really think that gives the public a false sense of security in the medical system. Check out the workings of an HMO case manager from Secure Horizons and the severe staff shortages caused by hospital systems like the Baptist Health Care System and you will find a completely different type of medicine being practiced.
quote:
Originally posted by elizowen:
Part two of ON OUR OWN TERMS reports on the evolution of palliative, or "comfort," care and its emphasis on patients' psychological,
emotional and spiritual well-being. As you watched the program, what was your reaction?

[This message has been edited by mducote (edited 09-11-2000).]

casero
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From: Hialeah, FL , USA
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posted 09-11-2000 10:54 PM     Click Here to See the Profile for casero     Edit/Delete Message Reply w/Quote
quote:
Originally posted by elizowen:
Part two of ON OUR OWN TERMS reports on the evolution of palliative, or "comfort," care and its emphasis on patients' psychological,
emotional and spiritual well-being. As you watched the program, what was your reaction?


I began to understand what palliative care is about. It really broke my heart to watch as Joyce Kerr and her family dealt with her imminent death. In the end though I understood that she had a diginified and as far as could be managed a comfortable death. Clearly her family loved her dearly and I was glad to see that she was able to spend her last days surrounded by those who loved her the most and in the familiar surroundings of home.

Watching this series is not easy. In fact it is heart wrenching to watch these people go through this ordeal. Even though I have never met them my heart goes out to every single one of them and they will all be in my prayers tonight. Even though it is difficult to do so I plan to watch every single segment of this series. I have learned a great deal about hospice care and palliative care these past two nights that I doubt I could have learned better any other way. I want to thank all the family members who allowed America into their hearts and homes for a brief while and share their grief. Hopefully this series will plant the seeds for a fundamental movement in western medicine regarding how to treat terminally ill patients and what options should be presented to them.

I thank Bill Moyers and all the staff who worked on it will all my heart for producing such an inspirational series. God bless you all.

Juan Casero

Krisslp
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From: Clifton Park, NY USA
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posted 09-11-2000 11:04 PM     Click Here to See the Profile for Krisslp     Edit/Delete Message Reply w/Quote
I commend you for bringing this series to the public! I hope this is just the beginning!

pjn59
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From: East Rochester, NY USA
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posted 09-11-2000 11:10 PM     Click Here to See the Profile for pjn59     Edit/Delete Message Reply w/Quote
Tonight's show brought back such strong memories of my father-in-law's death in 1984 of bladder cancer. We had excellent hospice care which enabled us to be with him as he died a peaceful death in the summer home he built and loved. Even though we still miss him terribly, I have always felt so fortunate that our family was able to go through it together. Some of our favorite family stories originated during that summer when we were all together caring for him. I also sat with tears streaming down my face, but I'm glad Joyce's family was able to be with her in their home. I think her daughter will be a better doctor because of this experience.

gmabeajaye
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From: Indianapolis, IN
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posted 09-11-2000 11:15 PM     Click Here to See the Profile for gmabeajaye     Edit/Delete Message Reply w/Quote
I was quite impressed with Dr. Morrison in particular. There is just one thing I want him to change. His vocabulary. Frequently he said "There is no right way to do this." when talking to his patient and family about preparing to die. I would suggest he change that statement to "There is no WRONG way to do this." It is, indeed, the most difficult thing to go through. However, if there has been open conversation with all involved about what the wishes of the dying one is and what all the options are then the sincere actions of all invovled can only be the right way to proceed. It's hard enough to deal with the loss, no matter how prepared you are. To have the added quilt associated with the idea that there is no "right" action is far to much to expect of ourselves and loved ones.

dmanor
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From: Greenville, Ms, USA
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posted 09-11-2000 11:31 PM     Click Here to See the Profile for dmanor     Edit/Delete Message Reply w/Quote
I lost my mother just four months ago and this program brought it all back. If only Palliative Care was available at every hospital, we might not have gone through such a struggle with my mothers care. At one point we were explaining medical options to her and she said to us, "What kind of quality of life will I have if I consent to these procedures?" I didn't understand what she meant because of course I was focused on extending her life. Later one, it dawned on me and my sister at the same time, that what she meant was that at that moment she still had her faculties about her and could carry on conversations with us and laugh and eat. She was frightened that if she consented to a medical procedure, she would never recover and that would be it. Her "good" days would be over. Oh, how I wish we had listened to her and let her go home and enjoy those last days. I agree wholeheartedly that our society is not prepared to face death and we should be more open to do so. Especially those of us who are Christians and know what awaits us in Heaven.

vw
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From: Chatham,Ontario, Canada
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posted 09-11-2000 11:56 PM     Click Here to See the Profile for vw     Edit/Delete Message Reply w/Quote
Tonight's episode was brought back many memories for me. I lost my mother to cancer 5 years ago and she passed away at home. That's what she wanted and as a family...none of use wanted it any other way. Our family did not have the option of hospice care at the time as it was not available in our community. Our local hospital still has no palliative care section. There are simply 2 or 3 rooms per medical floor. I had worked with in the hospital as a clinical food service supervisor for 8 years prior to my mother's final months at home and I, (along with my father & brothers) was determined she be at home. Though we had no palliative care physician or oncologist, my mother had a wonderful doctor who sat down with us 2 weeks prior to her death and did just as the physician in the program did....answer our questions and prepared us for what to expect. I thank God for my mother's doctor. She told us that when she'd met my mother and had learned she had her particular kind of cancer...my mother told her exactly what she did not want in terms of recessitation, hospitalization, etc.
Mom had also talked to me about it in the early years of he illness (which lasted 5 yrs.). Mom used to tell me things that she said she couldn't talk to my father about regarding her wishes for her death. It used to frustrate her so, and I'd listen not really wanting to hear what she said at first because I didn't want to think of her death. But she had to talk and plan (just as the Joyce said she needed to do). I was so afraid my father would never say what he needed to say and let Mom say what she had to say before she was gone. But during the last couple of months, as my father watched her deteriorate, he came to accept that she would not "be cured". Mom was able to say what she wanted and Dad was finally able to listen. That was so important to her. We, like the Kerr's, got together on weekends in those last months and watched her get progressively weaker. We watched her rally for the gatherings, then take a few days to recover. With each gathering, it became more difficult to "bounce back". Mom was ready to go I'd say anywhere from a month to a couple of weeks before she passed away. She said what she needed to each of us and she wanted to go. And we all wanted her pain to stop. I think, she didn't like us to have to see her getting worse and to see her pain.

Everything the Kerr's were going through....I felt like it was my family...it all came back.

My advice to families is to listen to your loved one who is dying...as difficult as that may be for you & the loved one. And as a family use what ever resources are available to you. We didn't have that many 5 years ago...being in a small town, in a health care setting that was and still is so behind the rest of the health care field in terms of provision of palliative care.

And seek out series like this one....even after 5 years, I'm trying to understand what my mother and our family went through in those last months. Perhaps dealing with palliative care patients in my work environment makes me want to seek a deeper understanding. I believe my own loss has made me especially empathetic to the families of palliative care patients. I'm hoping that understanding my own experience with my mother's death will help me better support and care for the patients themselves.

Milanprima
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posted 09-12-2000 12:00 AM     Click Here to See the Profile for Milanprima     Edit/Delete Message Reply w/Quote
[ My biggest problem with being in the hospital is too few nurses for the proper care for patients.
I would tell them over and over but people would forget.

Your comments about care in the hospital reminded me of my mother's stay in what was supposed to be a rehabilitative nursing home after she broke her hip. Mostly older people, and all (theoretically) would be going home. There were NO pictures or any decoration on the walls, either in the rooms or hallways. No calendars, of course. Nothing to make you think you were in anything but a sterile concrete box almost without windows.

My brother and I promptly brought pictures, calendar, her favorite stuffed animal, etc. etc. and plastered the walls and room with all of this. But a lot of patients that age don't have family who can do that. And a lot of people are intimidated by the nursing home and wouldn't dare put up pictures, even if they thought of it.

No, the only way you can assure that your patient gets proper care is to stay with them, night and day, and even then things can slip by. In the example you gave, I would have posted a big sign over the bed telling the aides which side to put the tray on. The nurses should have done this, when you told them. To be fair to the aides, they don't have access to patient charts, only the medical people do. But nursing staff should have seen that this was taken care of by posting a sign.

tuckers
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From: Milford,MA
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posted 09-12-2000 12:28 AM     Click Here to See the Profile for tuckers     Edit/Delete Message Reply w/Quote
Kudos once again to Bill M. I thought tonight’s show was wonderful. However, it has been my experience that all palliative care is not the same.
Last year I spent two extremely difficult weeks watching my father die from Mesothelonima. He was at home, with the ones that loved him close by. This was the way he wanted it. My father was a very stoic man and spent his whole live avoiding medicine of any kind.
Hospice came into our lives that last two weeks. The nurses who came were wonderful. We were reassured that my father would feel no pain. When his pain escalated, he agreed to increase the small amount of medicine he had been taking. He was place on a measured Morphine drip. As the days progressed his pain became worse.
Daily care became excruciating for him and for us. We pleaded with the nurses to give him more medication. They said they legally could not. The last 72 hours of his life were torture. I would not have wanted my worst enemy to suffer what this kind, caring man went through.
Although the whole family agreed with my Dad that Hospice was the way we wanted to go, no one had any idea that he would be left to suffer such an agonizing death, as we sat helplessly by. I still don’t understand why this was necessary.
I whole hardly support the idea of someone choosing to die at home with the support of a group like Hospice; however, Something must be done to help manage the pain in a more human way.
I am curious if others have had this experience with their loved ones. As much as my father loved life I can’t imagine even he would have been opposed to more pain medication so as not to have suffered those last 72 hours. This was not a death with dignity, but a cruel ending for a man who deserved so much more.


[This message has been edited by tuckers (edited 09-12-2000).]

tuckers
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From: Milford,MA
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posted 09-12-2000 12:32 AM     Click Here to See the Profile for tuckers     Edit/Delete Message Reply w/Quote
quote:
Originally posted by tuckers:
Kudos once again to Bill M. I thought tonight’s show was wonderful. However, it has been my experience that all palliative care is not the same.
Last year I spent two extremely difficult weeks watching my father die from Mesothelonima. He was at home, with the ones that loved him close by. This was the way he wanted it. My father was a very stoic man and spent his whole live avoiding medicine of any kind.
Hospice came into our lives that last two weeks. The nurses who came were wonderful. We were reassured that my father would feel no pain. When his pain escalated, he agreed to increase the small amount of medicine he had been taking. He was place on a measured Morphine drip. As the days progressed his pain became worse.
Daily care became excruciating for him and for us. We pleaded with the nurses to give him more medication. They said they legally could not. The last 72 hours of his life were torture. I would not have wanted my worst enemy to suffer what this kind, caring man went through.
Although the whole family agreed with my Dad that Hospice was the way we wanted to go, no one had any idea that he would be left to suffer such an agonizing death, as we sat helplessly by. I still don’t understand why this was necessary.
I whole hardly support the idea of someone choosing to die at home with the support of a group like Hospice; however, Something must be done to help manage the pain in a more human way.
I am curious if others have had this experience with their loved ones. As much as my father loved life I can’t imagine even he would have been opposed to more pain medication so as not to have suffered those last 72 hours. This was not a death with dignity, but a cruel ending for a man who deserved so much more.

khelen36
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From: Virginia Beach, VA. USA
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posted 09-12-2000 01:01 AM     Click Here to See the Profile for khelen36     Edit/Delete Message Reply w/Quote
In the Norfolk/Virginia Beach, VA area, Sentara owns many hospitals, medical facilities, and nursing homes. My husband had Parkinson's, and I cared for him at home for 5 years. On July 12, 2000, he became quite ill (agitated, hallucinations, unable to sleep, unable to walk or talk plainly) and by July 19, he couldn't swallow applesauce or Ensure. The home health nurse called his doctor, and he said to get him to the emergency room at a nearby Sentara hospital. His doctor's office has a team of physicians who work at the hospital and see all their patients admitted to the hospital.
His doctor called in a neurologist who diagnosed him with Progressive Supranuclear Palsy and said that his health would continue to deteriorate and there was no hope of him getting better. His physician told me what would probably happen is that he would get pneumonia and then die. I put him in a Sentara Nursing Center. The first week of August he ran a high fever, got dehydrated and got pneumonia. They put an IV in, gave him antibiotics and oxygen, and ran tests on his kidneys and liver. After finding they were badly damaged, the physician at the Nursing Center talked with me and recommended that just comfort care be given -- no IV, no medicines, keep the oxygen for more comfortable breathing, and start morphine shots. My husband and I had Advance Medical Directives prepared, so I agreed. He died August 14, 2000. I spoke with 2 doctors at the Nursing Center and many nurses and nurse's aides, and all of them were very comforting, caring and concerned. They continued to see that my husband got the very best personal care. One nurse spent a lot of time with him at night, talking and holding his hand. He seemed to be unconscious, with no response to anyone, though I continued to talk to him while I was there during the day. He was in two other nursing homes 5 years ago for 11 months, and this time was a new experience in that we both received such good care and concern. I consider us very fortunate to have had this good experience -- this is a very hard thing to go through, and it means so much to have people who care around you. The first two TV programs have helped me deal with my loss, and I look forward to seeing the other two.

Savvy Widow
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From: Orange, California USA
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posted 09-12-2000 02:01 AM     Click Here to See the Profile for Savvy Widow     Edit/Delete Message Reply w/Quote
So grateful for the sensitivity captured by Bill Moyers & entire staff in the first two parts of the Series.
Each family, each couple touched me deeply --I recalled my own journey in 1989 as my late husband,Carson, and I began our retirement planning & will preparation & the DURABLE POWER OF ATTORNEY FOR HEALTHCARE. Both of us were healthy & vibrantly optimistic about the 'good life' ahead after years of meaningful work. We took well over one year of various chats about legal prep., financial security, dying with dignity, funeral wishes [to cremate or not to], and discussing our wishes with our 4 children. We made specific 'appointments' with one another to clearly express our individual wishes. Dying together in an accident vs. dying separately -- led to many fruitful tender sharings as well as some silly ones. We met with our estate planning attorney & then signed our wills, Durable Power for Healthcare exactly 7 days BEFORE Carson's aneurysm burst suddenly. Five weeks later, still in the coma, as his life support ceased in accordance with his directives, he died peacefully surrounded by our family & friends. Carson & I had laid the foundation by openly sharing our discussions with family & friends -- my prayer is that every couple, every family, every person can begin the process BEFORE an illness or tragic accident occurs.
WITH EYES OPEN, PT.2 certainly will encourage others to begin preparation NOW.
Blessings upon this wonderful series.
Savvy Widow

Alexa
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posted 09-12-2000 02:10 AM     Click Here to See the Profile for Alexa     Edit/Delete Message Reply w/Quote
I wish this series had been available around 12 years ago. I had been spared of any close deaths for decades, so it was painfully obvious that sooner or later my aging parents, aunts or uncles, would start "leaving".

So, around Christmas, 12 years ago, my aunt's eyes were crossed, and she could not see well. She visited an eye doctor; he examined her eyes and bluntly told her that she was so full of cancer that she would die within a month. Horrified, she phoned her family physician; he called the eye doctor an idiot, and said that perhaps they should examine her when it was convenient, later in January would be fine. That gave her lung cancer an extra month to ravage her body before there was any intervention. She died in March after a horrendous amount of pain. She clearly knew the score; she accepted various trial drugs without great expectations for herself, but believing that she might help other patients after her. During that time, noone was allowed to mention the words "Cancer" or "Death" in my family; neither did one tell the patient that something serious was wrong. One whispered in the hallways outside, but never mentioned the C word or the D word... and she was kind enough not to throw them in anyone's face... But on one of her final days she suggested that my uncle remarry, and even whom!

I was fortunate that one of my neighbors in Upstate NY worked in a hospice and lent me some materials about death and dying. She also recommended the book, "Choices: Realistic Alternatives in Cancer Treatment," by Marion Morra and Eve Potts. I had a few hours to read about dying and end stage cancer before my last visit to my aunt. When her time came, I think I alone knew, and I think I was somewhat prepared. That helped me tremendously. Several years later I suddenly lost two cousins; then my father; then, after about a ten-days illness, my younger brother.

My father's death was horrendous to my whole family. He was - I believe - in excrutiating pain, and his throat had been burned out... and when he pulled the IV's out of his arm, they were reinserted. His veins were so frail that the doctors proposed inserting a feeding tube, a matter on which we in the family had differing feelings, but the choice never had to be made. Late the next afternoon he seemed better. He was watching Brian Boitano skating on TV. There was a horrendous snow storm starting, and we asked if it would be ok with him if we went home. He nodded; he couln't talk without great effort and pain. Then I asked him, kind of to check on his lucidity, if he knew where he was. Gazing at a poster of a coastline, on the wall between the windows (was he searching for the light?), he clearly said one Hungarian word: "Orszaguton," ("On the highway"). As my mother left, somewhat buoyed by his apparent good mood, I leaned down and kissed him and said good night; I told him that we all loved him very much, and if he had to leave, it was ok. He looked up at me with what seemed like surprise, or recognition. Several hours later he passed away in the arms of two very kind ICU caretakers.

My family had a private service with father's body present; mostly just reminescing and repeating his jokes, and that was very comforting. No makeup, no fancy stuff to hide the reality. Just all of us together, celerating who he had been. (Later we had a more public church service.)

My mother soon moved to Florida; she couldn't stand living alone in their old home, and her heart would not tolerate the cold winter weather.

At first all went well; then she developed severe congestive heart disease. She is beyond surgery, living only with the aid of many high priced prescriptions. After several attacks, she knows exactly how drowning slowly feels, and the prospect is terribly frightening. Over several years, her condition has gone up and down. Mentally she is completely with it, but her body is failing her. Things go along, then out of the blue an attack comes and we're on the roller coaster.

She has a great live-in caretaker, and lives in her own home; but WE, her family, are NOT THERE. We are living and working and raising kids in the Northeast. We visit when we can, several times a year, including some longer visits. After every visit she seems weaker and more fragile. I feel incredibly guilty; no amount of telephoning makes up for this. I wish I could be with her, and often don't feel I have any excuse not to stay... and she doesn't want to move here, away from her friends, her medical support system and her home, to live "on top of us"...

So here we are. It would be so much easier if we all could talk it out. Such time as we can spend together, we treasure. But it is painfully clear: when we were born, each of us signed a contract, and one day we have to fulfil it. And that makes all the days between precious and irreplacable.

DrHolly
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posted 09-12-2000 07:14 AM     Click Here to See the Profile for DrHolly     Edit/Delete Message Reply w/Quote
Thank you Bill Moyers, PBS and the palliative care doctors who allowed their work to be viewed by the public. I sobbed through most of the second part of this series. My own mother died a year and a half ago and there was no help of this kind during the last 10 days of her life. There were several doctors involved and we were receiving different information from all of them. No one seemed to want to tell us that she was dying. My father was in shock and denial and kept talking about her coming home. As a professor of social work, I knew she was dying but we were all dealing with it in our own unique ways. Having a third party involved would have helped tremendously. Someone who would have told us she was indeed in the final stages of life and what to expect.
I teach Death and Dying to all my social work students. It's a difficult subject that everyone has a hard time dealing with. We need much more awareness and education in this country on the dying process and the meaning of it all.

ecc3cats
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posted 09-12-2000 11:19 AM     Click Here to See the Profile for ecc3cats     Edit/Delete Message Reply w/Quote
In Dec., '97, I was part of a loving contingency of family attending the death of my favorite aunt. She had lived with and battled breast cancer for several years, but had chosen not to have aggressive therapy. No chemo. She agreed to radiation only for the sake of her son who begged her to do all she could. We learned so much from her. Although she wanted to live, she also wanted to die on her own terms. We were so very lucky in that her daughter & 3 granddaughters are RN's, so we were able to have informed pain management in the home. I say "informed", but it was often trial & error. We all knew we didn't want her to be in pain. Some relatives who came to visit didn't like the fact that she was not alert when they were there--they thought she had too many drugs. But they were unaware of the severity of the pain when she didn't have drugs. It was a trade-off that we gladly made. Through all this I learned that you sometimes have to WORK at dying. It doesn't always just happen. My aunt was frustrated at the end because her heart (she always worried about it) just wouldn't give up even though she was ready. She told us repeatedly that she didn't want any medicine (meaning antibiotics). I feel very fortunate that we could all be with her when we wanted. That meant piling on her king-sized bed to take a nap or watch TV with her, bringing the kids in to cuddle & sing with her, or just stroking her & holding her hand during the last 3 days.
A few months later, at the opposite end of the spectrum, my best friend died of breast cancer at age 48. She had fought through 3 recurrences with every medical method known to man. Docs tried EVERYTHING. She died in a hospital in absolute agony with strict visiting policies & a sterile environment. It was AWFUL. Even though I was considered a family member & had access, the scene could hardly have been less conducive to a loving atmosphere. She always had beautiful nails, & when I started to give her a manicure when she was near coma, I was told that it may give her too many germs. (I did it anyway.) I agree with the premise that medical professionals view death as a defeat. It would have been much better if she had been allowed to die without the endless tests & machines. What was the purpose of all that--to prolong her life by a day or two?
Thank you for opening the door for this discussion. I hope America wakes up & realizes that the vast majority of us will face these choices concerning ourselves as well as those we love. It won't just go away.

Suni
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posted 09-12-2000 01:16 PM     Click Here to See the Profile for Suni     Edit/Delete Message Reply w/Quote
The second part of this wonderful series didn't disappoint me. Instead I called this morning to order the video - which my mother has already told me that her minister would like to borrow it as she has had to miss the series! I have also joined Partnership for Caring (http://www.partnershipforcaring.org/default.htm ). We all need to do whatever we can to help assure all of us that our deaths will be dealt with in a humane and caring manner.

My family has been fortunate... the loved one's I've lost had (mostly) good care to the end and for that I will always be greatful. But my mind and heart goes out to those who are alone on this earth. What happens to them? My feeling is that without a family there to insist on quality care, people may not get that.

To all of you here, your stories have touched me deeply, just as those on the series have done.

mws47
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From: Dripping Springs, Texas
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posted 09-12-2000 02:07 PM     Click Here to See the Profile for mws47     Edit/Delete Message Reply w/Quote
Wonderful program. Palliative care can be a wonderful alternative, but it does not always work. My father, pancreatic cancer, had severe adverse affects to all the pain medication he received that was stronger than vicodan. This included the Fentinel patches, morphine and several others I heard mentioned.

He would begin to experience very vivid hallucinations, some bad, some very funny. It would also react like "speed" for him and he would remain awake for literally days - the longest was 5 days without even a nap.

What could have been done to avoid this?

Being with him through a tough 17 months was wonderful, eventhough he never gave up hope and never accepted he was dying. One of his last questions to the oncologist was, "Isn't there someway to laser this thing out or something?"

tbva
Member

Posts: 3
From: Northern Va
Registered: Sep 2000

posted 09-12-2000 04:25 PM     Click Here to See the Profile for tbva     Edit/Delete Message Reply w/Quote
I come from a counseling background where the term "case management" describes being an advocate for a client. When my friend was assigned an "oncology case manager" it took me a while to realize she was a gatekeeper for the terminal patients in the HMO.Everything had to go through her first, medication requests, medical equip requests, specialty medical services. I figured the system out and set out to wear her down- it worked. Most times it was easier to just approve what my friend needed than fight me- I can be a very vigorous advocate but it is so time and energy consuming.In hindsight, it was worth it to fight them to secure the services my friend needed.

mcdl99
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Posts: 1
From: Long Beach, CA, USA
Registered: Sep 2000

posted 09-12-2000 06:23 PM     Click Here to See the Profile for mcdl99     Edit/Delete Message Reply w/Quote
I just tuned into this Bill Moyer's special last night (Monday,9/11), unfortunately missing the first part of the series on Sunday. This is excellent! The reason I'm pround to watch and support Public Television. When they used the word 'palliative' I had to run to my dictionary to look up the word. I've heard of hospice, and have experienced it first hand as a close co-worker died of cancer (@ home) a couple of years ago, I was not familiar with this field. I wholeheartedly believe this to be a must in future specialties and medicine. However, I'm afraid with our health system in this nation to tightly controlled by the HMO's/insurance companies, this type of care will only be available to persons and families of such persons who have the financial ability to cover the costs without leaving them destitute. It also requires "CARE" and "CARING", a sentiment that is not understood by most HMOs as it can't be explained in dollars and cents. Let's hope this program will be watched by many who will become more aware and put the pressure on our representatives in Washington DC, as well as within their state legislatures, as well as many doctors, to make this a reality for each and every American citizen.

Donna Isenhower
New Member

Posts: 1
From: Angleton, TX USA
Registered: Sep 2000

posted 09-12-2000 10:39 PM     Click Here to See the Profile for Donna Isenhower     Edit/Delete Message Reply w/Quote
The progam was fantastic. I wish pallative care was available in 1977 when my mother died a horrible, heartwrenching, long, drawn out death due to cancer. However, I was very interested in the "Pain patch" the program talked about. My sister has had back surgery and is now in chronic, constant pain and the doctors cannot do anything more. She takes 6 Vicadin a day, valium, Soma and god knows what else. Who can I talk to about the pain patch? What is it specifically called so I can ask her doctor?

dsmithmd
Member

Posts: 5
From: Atlanta, GA USA
Registered: Sep 2000

posted 09-12-2000 11:10 PM     Click Here to See the Profile for dsmithmd     Edit/Delete Message Reply w/Quote
I noticed that too and commented to my wife just like you did. Obviously, said either way, I think the message is understood. However, I think that saying "There is no wrong way to do this" is more comforting and less hopeless sounding to the caregivers.

quote:
Originally posted by gmabeajaye:
I was quite impressed with Dr. Morrison in particular. There is just one thing I want him to change. His vocabulary. Frequently he said "There is no right way to do this." when talking to his patient and family about preparing to die. I would suggest he change that statement to "There is no WRONG way to do this." It is, indeed, the most difficult thing to go through. However, if there has been open conversation with all involved about what the wishes of the dying one is and what all the options are then the sincere actions of all invovled can only be the right way to proceed. It's hard enough to deal with the loss, no matter how prepared you are. To have the added quilt associated with the idea that there is no "right" action is far to much to expect of ourselves and loved ones.

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