posted 09-12-2000 11:15 PM         

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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.

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

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posted 09-12-2000 11:26 PM         

quote:

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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.

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

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posted 09-12-2000 11:31 PM         

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Originally posted by tuckers:

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posted 09-13-2000 12:46 AM         

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Originally posted by dmanor:
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.

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posted 09-13-2000 10:14 AM         

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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?
[/B]

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posted 09-13-2000 11:26 AM         

It was still the most difficult time of our lives...trying to get our family ready to let go of a special person in our lives...but when it was time she died with grace and it was very peaceful. The point in this series about how to be prepared so you do not panic is crucial to the letting go.

posted 09-13-2000 01:19 PM         

quote:

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Originally posted by Donna Isenhower:
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?

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posted 09-13-2000 01:57 PM         

> I watched the Moyer program tonight and the follow-up question and answer
> forum. It was asked why family members are reluctant to bring up the
> subject of death. I know that in my case as my sister was courageously
> fighting cancer (I was her bone marrow donor) and going through the "hell
> of healing," I was "afraid" to think "negatively" that this might mean
> that I was giving up on hope. Nurses, doctors, everyone attending to my
> sister fought bravely, tried everything possible...but when it was
> apparent "that my almost twin and shadow" would suffer no longer, the
> nurses helped Pat go in peace. They kept reassuring her that it was "all
> right."
>
> On the other hand, Hospice came in during the last stages of my mother's
> illness. She had been in a nursing home for nearly ten years. Hospice
> helped us and Mother complete her journey with ease and dignity.
>
> Thank you for these programs,

posted 09-13-2000 02:05 PM         

> I was watching the program just now and it brought back memories of the
> death
> of my aunt who passed away three years ago. My aunt had
>
> suffered a stroke ( a mild one) back in 94 and came out of it very well.
> She
> continued to live and do all the things she used to do until july of 97
> when
> I noticed that a change in her. She was not her usually self. I asked
> her
> if something was wrong but she said no. (Even if something was wrong she
> would not have mentioned it to me because she didn't want me to worry). As
>
> days and weeks went by I noticed she was not eating as much. She would
> lie
> down for a while and then got back up. It was an uneasy feeling. One
> morning I got up to check on her and found her in the bathroom on the
> floor
> by the commode. I asked her what had happened and said she did not know.
> I
> aske if she missed the commode and she laughed and said yes. I was able
> to
> get her up and got her back into bed. My mind was racing I could not
> think
> what the problem could be. I did not want to alarm my father even though he
>
> lived downstairs. Finally I call the visiting nurse (she had one from the
>
> time she had suffered her stroke) and asked her if she would come by and
> take
> a look at her. When she arrived, she looked at my aunt took her preasure
> and
> said I should contact her doctor right away and make arrangement for the
> ambulette service. By the time I called the doctor and ambulette service
> things had changed. I could'nt get her to get dressed because she was
> unmobilzed. I had to run downstairs and get my father and his wife to
> help
> me because she could not get up from the chair. We had to literally
> drag
> her down the stairs by sliding her down on a blanket. We got her to the
> hospital and found that she had suffered what they call mini strokes. She
>
> stayed in intensive care for about a week then was moved downstairs to the
>
> second floor. She seemed to be pulling out of it because she was able to
> sit
> up and eat, go for therapy. I was happy because that meant she would be
> coming out and I was going to make arrangement for her to go to a nursing
> home for therapy. But somehow it did not happen. I would visit my aunt
> every day while she was in the hospital. Since she had no children (she
> and
> my grandmother raised me from I was a year old) I was all she had. I
> remember the last time I saw her she had her arm under the cover and they
> were shaking. I asked her if she was cold and she said yes. I did nt
> know
> at the time that she was suffering another stroke. It wasn't until the
> next
> morning when my brother called to say she was suffering seizure and I
> should
> come. When I got there she was surrounded by doctors who was
> administering
> medication to contaract the seizures. That night I stayed at the
> hospital
> and every day after that. Her doctor had asked me if I wanted to sign a
> "do
> not resucitate form" I said yes but when the moment arrived and I saw that
>
> she was gasping for breath (like a drowning person) I declined. The
> doctor
> who was in charged and I had it out. I could not stand by and see her
> gasping for breath and not do something form or no form. She eventually
> passed and I still have not gotten over it. You see after my aunt passed
> a
> day befor her 85th birhtday her younger brother passed a month after her
> and
> lest than six month my father. My grandmother had only three children. I
>
> had to bear all this by myself without a support group. And to make
> things
> worst my father's wife decide to sell the house (it was a two family house
> on
> Long Island) and not share anything. So now I am by myself and when I saw
>
> the program last night and tonight I began to think will I anyone be there
>
> for me to hold my hand and to make decisions for me. That is the hardest
> thing for me especially now that I have moved from New York to another
> state
> where I don't know anyone but just friends of my aunt. Death is sad but
> it
> is the begining of a new journey that we all have to take sooner or later.
>

posted 09-13-2000 03:00 PM         

No where in the series has the nursing research on this topic been presented or the nursing clinical experts consulted.
Nurses have been the leaders in palliative care, developing specific strategies for addressing the emotional and physical needs of the terminally ill. Nurse researchers have been collecting important data on caregiver role strain and providing insight into the development of interventions designed to lessen that strain.

As patients have become more consumer oriented in their use of health care services, they are helping to shape physician practice and physicians are beginning to use those emotionally supportive interventions that nurses have used for aeons. Counseling and supporting families, explaining and encouraging use of pain medications, providing anticipatory guidance about the dying process, coordinating resources so that familiies can be supported while their loved one dies at home, and encouraging candid yet sensitive discussions about death and dying, are an integral part of autonomous nursing practice.

Nurses are the experts in this area and yet they were not the primary consultants used in your program. To us, this represents a significant omission of the facts and denies the public access to both critical perspectives and clinical experts in the field.

Theresa Raphael-Grimm, PhD, RN, CS
Ian S. Grimm, MD

posted 09-13-2000 06:56 PM         

Dear Tuckers,
I have been an RN in hospice work for 10 years and have never heard of refusing to increase pain medication for any reason including legal. I am so sorry that this was your experience. When someone is terminal, there is NO reason for holding back any medication that would increase his or her comfort unless that person refuses it.

posted 09-14-2000 09:08 AM         

I will forever be thankful for the extra option that a Technician named
Michelle gave me. My Mom went quickly, without lingering in helpless pain. I am still relieved that her death was indeed, kinder and more gentle, and have no regrets in helping fulfill her last wishes.

posted 09-16-2000 09:11 AM         

quote:

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Originally posted by Donna Isenhower:
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?

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The "pain patch" they are referring to is called a Duragesic Patch. It is a transdermal patch which means that the pain medication is absorbed through the skin. The medication it contains is a narcotic called Fentanyl. The patch itself is clear and maybe a little smaller than a credit card. It has a sticky side and is simply applied to the skin, either on the upper chest or back of shoulder, or even upper arm. There's a small amount of clear, gel-like material in the patch which contains the Fentanyl and is able to seep through the side that is touching the patient and is absorbed by the skin. This form of medication delivery allows for a slow, continous release of pain medication over a 72 hour period. The patch is removed and replaced with a new on every three days. The slow release gives most patients more even pain control. Because it is still a narcotic, the same side effects can be involved (such as constipation). Duragesic comes in 4 strengths - 25mcg, 50mcg, 75mcg, 100mcg(micrograms). Hope this helps.

posted 09-17-2000 07:14 PM         

He had always been told that he would either bleed to death or die of an infection. Pain management was agreed to between my husband and his physician. What neither one of us expected was that he would suffer strokes and brain stem bleeding. He was hospitalized on a Wednesday evening and by Thursday evening, after discussing the results of his tests, we chose to move to palliative care and to move him home as soon as hospice could be set up. From that point on, every one of the medical team moved to a different type of care. Anything we needed we got including sleep in arrangements in his room. The care was superb.

The following Monday, having suprised everyone that he could survive that long, he came home. The hospice organization had orchestrated all the equipment and medical needs including the suggestion that we have an RN for the night instead of hiring an inhome health aide. He was happy to be home with his beloved dog and in familiar surroundings. There was no more anxiety about dying in hospital. He died early the next morning. It was a privilege to be one of his caregivers and to be with him at his last moments.

posted 08-11-2001 02:30 AM         

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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?

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