This is the latest installment in a series the Times has been having. It is given front-page play with a double page spread inside the first section. It is a comprehensive look at palliative sedation. It may not be easy to read but I think we need to know the issues: http://www.nytimes.com/2009/12/27/health/27sedation.html?_r=1&hp
Clare I read the article with tears in my eyes. My husband is almost comatose and chokes on his own saliva. Hospice will abide by my wishes. I have a lot to think about. Today I woluld not consider "terminal" sedation-I don't know about tomorrow.
I got the impression from the article that "terminal" sedation isn't all that common; that it's intended quite seriously by doctors to relieve pain and agitation; if it causes death, so be it.
What worries me is that this might get picked up by certain circles as 'euthanasia', painted in black and white, and give us problems when the time comes for our spouses. A revival of Terry Schiavo.
Thank you, briegull, for mentioning the article; I wouldn't have seen it otherwise, and it does give more food for thought. Hard decisions. I've read if the body is shutting down, introducing food/liquid makes it "work" when it doesn't want to and causes pain. I've read without hydration, the body is in pain. Time for more reading, questioning, I guess. My hb isn't close to needing any sedation--at least today.
briegull, I've been following this series. If comfort and pain relief are major goals of hospice, as I believe they are, and the patient is under hospice care because he/she is dying and the family is hoping for a "good" death," why would we not want them kept as comfortable as possible? If this allows/causes them to be unaware of their physical suffering, is that a bad thing?
I have very specific instructions in my living will. If I can no longer speak for myself, once it has been determined by two physicians who know me that I will not recover, I want no feeding tube, no IV except for sufficient pain medication/sedation to keep me as pain free as is achievable. At some point I will stop breathing. With or without sedation, at some point I will stop breathing. Prolonging living is one thing, prolonging death is another entirely.
Okay, now ask me what I really think. I'll put my soap box away. Other peoples' differing views are just as valid and I would never try to persuade someone to my point of view on this matter. The questions I raised are not directed at you, briegull, or anyone else. They're just questions.
Well, my husband died at home after two weeks of no food and no hydration save for the moist sponge I used to keep his lips from drying out. He was on a morphine patch and I had liquid morphine here to use if I felt the need. I saw no signs of pain at all...in fact those last two weeks were very peaceful and calm. From what I understand, trying to force food and liquids when the body is shutting down is what causes discomfort.
Of course, that is just what I experienced, but was told many times by doctors and nurses that the mind goes into almost a state of euphoria and that the passing is very peaceful when nature is allowed to take its course. Or, maybe we were just the lucky ones that the final days were so easy.....
Bluedaze, how I wish I could be there to hold you in my arms. I'm typing this with tears in my eyes as I think about the heart wrenching decisions we all have to make. I have been thinking about my Dad and how grateful I was when he was medicated by hospice and was finally out of pain. Dying should be painfree and calm and peaceful. That's the kind of transition from this life to the next that I want for myself and my husband. Stay strong my friend and know that I am here for you anytime. Arms around, Susan
Nancy said that her husband's throat closed completely and no water could even get through. So all she could do was moisten the mouth and lips with the water on swabs.
On another note... for those whose spouses are not yet ready for Hospice and may not be aware.....Hospice only accepts your spouse when they deem them to have only 6 months left to live, but some are re-evaluated and extended for another 6 months. On rare occasions, they last two years. However, when you ask Hospice to come into your home and give the care and provide the comfort and mainly aid the caregiver, enabling you to keep your spouse at home until the end, YOU SIGN A DO NOT RESUSITATE ORDER.....If you call the ER instead of Hospice in an emergency, you will immediately be terminated from Hospice. Hospice knows how to make the last days peaceful and pain free for you and your spouse. They help you so much and know what they are doing. My husband has been on Hospice for five months so far. Nancy's husband was only on it for weeks.
There is something else that is different with Alzheimer's than with dementia and terminal cancer and other terminal diseases...the body organs shut down. The kidneys, the stomach, the throat, etc. The heart and lungs being the last to go. But the body won't take food or water once the throat closes, so feeding tubes would be useless...the liquid wouldn't go to where it is supposed to go anyway. Other terminal illnesses work differently. In the last 5 months, I have done extensive reading, believe me! When my husband's body starts shutting down, it is time for him to go on to Heaven...not for me to selfishly try to hold on for a few more days. I will not hasten nor will I hold on. The greatest gift I can give him at that point is to set him free.
Of course, this is just my own opinion and what I plan on doing. Everyone has to make their own decisions and they have to be decisions that they can live with. We all owe it to ourselves to read the articles like Briegull was nice enough to share with us so that we can see what is available and make our own decisions.
There are books and articles online about all of the hard choices you will be making at the end. I decided to make my choices early on. I was in therapy early on and was told to talk to my daughter about all of the hard choices: no feeding tubes, no intravenous unless a Hospice doctor thought it would help with comfort, no replacement of the pacemaker battery, no breathing tubes, etc. It really does help to let everyone have lots of time to make these decisions, and we are now a united front.
One more thing. I've noticed because some of our starred members have shared with us, that a period of extreme agitation sometimes occurs just before the patients come to the end stage days before death. One of the reasons for the sedation is to control extreme agitation according to the article.
Starling, you are so right about the extreme agitation. My Dad was at home with Hospice, but being the week of Thanksgiving our hospice nurse was trying with all her might to avoid coming out to our house. We ended up having to call an ambulance, were treated rudely by paramedics WHO I KNEW, but once we got him admitted, we were treated with dignity and respect and he was allowed to die as he lived, with grace and dignity in the care of his family and close friends. I could not have asked for better nurses, comfort care or compassion.
I thought the article was encouraging. I don't want to suffer a long, painful death, I wouldn't want anyone that I love to suffer either. I'm so glad someone had the courage to publish this series of articles, it's about time.
I just read the article. In my mind,the decision to use sedation and/or pain relief medications toward the end of our LO's journey is a personal one, on behalf of our LO in accordance with our Lo's wishes and in agreement with us as the Caregiver and the medical personnel involved. That said, I really don't see this as much different really, than all the times I've faced the "Black Box" dilemma. We are faced with symptoms for which there are limited choices for treatment, and not treating is not an option. Meds. not to be used for Seniors, or not to be used for dementia. But there are no other choices. My DH and I discussed this topic long ago. He wants no part of respirators, defibrilators, etc. When it's his time he wants to go. There is already a DNR on his files, and has been since shortly after his Dx. But, he does not want to hurt. He won't. No matter the name it is given and the definitions attached to it, medicating to ease our LO through the last stages of dying is an act of mercy for all the family involved, IMHO.
I think we all agree about this, pretty much. What concerns me is: it is raising awareness of what all of us know is done all the time, and what we intend to do. Awareness that only needs a spark to set it off into full-blown brou-ha-ha, as Terry Schiavo was. The Times News Service distributes its articles all over the country. I'll be curious to see if any of us pick up any negative comments about it.
I just went and skimmed through the comments on the Times site - over 200. Only one was of the kind I am fearful for, so I may be being alarmist. But it says:
frightening....keep the government out of health care...when it comes to matters of life or death waste the damn money..so what if it doesn't always work or isn't profitable...not everything has to be..we could afford it if we didn't waste all kinds of money elsewhere...fire every other gov worker and we wouldn't miss a beat..the last thing we need is a culture of doctors encouraging families to give up or withholding treatment...totally horrifying.
Oh Briegull you are so right! For years we have been trying to help families know when the end is in sight and to know when extraordinary care is unwarranted and point out when it prolongs pain and suffering. Doctors and nurses and all members of a good health care team then support the family through this process. Yes, hospice and others have prescribed terminal sedation for many years. Having been with loved ones and others during this process it is a peaceful, dignified death. What does everyone want? Please no pain and suffering. It is not euthansia, but a comfort measures only situation. By the way research has demonstrated that dying without food or hydration is euphoric and not painful. That said, it has been my contention, again my humble opinion, that even if a patient and family are aware of the terminal status and they still want everything done...intubation, feeding tube, whatever, it should be their decision. Now my concern.
If you read the language in the house reform health bill...the so called "death panel" the language did open a tiny door for government to come in and make decisions for families in their stance of we are paying for it so it can be our decision! Having sat an ethics committee for years these cases...Schiavo one of the most well known...are not often cut or dried issues. Some will say we do too much for terminal patients....or too little. With rationing of health care you should not be surprised (look at mammo) if the government is not eager to cover costs for prolonging incurable illnesses. They call it futile!! Again, I believe in a well informed consumer...hopefully being supported by a competent, caring health care team to make the most appropriate decision for their loved ones. After all they have to live with the decision.
I applaud Carosi and all of you who have had the discussion and have a goal in sight. A peaceful, dignified death. May we be as kind to our loved ones as we are to our beloved pets.
I have not read the article but I made the personal decision to use terminal sedation with my father in the end stages of his cancer. He was in a hospice home and I was spending the nights because he was dangerously leaping out of bed at night to go to the bathroom even though he was no longer eating, drinking or able to walk. I would grab him to stop him from falling and then push the button for the nurse because I was not big enough to manage a person that could not walk on my own. It was the middle of Sunday night and the night nurse and I manuevered him into the bathroom because that is what he wanted to do. All of his waking moments that weekend (he was asleep most of the time) were full of turmoil and agitation even with all the medications they had him on to control agitation. THe night nurse who was very quiet and not very friendly, quietly said to me..."this is not right". She verbalized exactly what I had thought all weekend.
Monday morning I asked the hospice doctor to sedate my father to a level where he was always emotionally, mentally and physically comfortable. He hesitated and said he did not want to eliminate the last good moments that we would have together. I told him there were no good moments all weekend and it was not fair to my father. He complied with my wishes and my father rested comfortably on Monday. He awoke through the sedation twice on Tuesday where I briefly hugged him and told him I loved him (and he told me the same) and he died peacefully Tuesday evening.
You will know, when the time comes, what the right decisions are. Advocate for your love one for a death free of all pain. I have no regrets.
The decision was made by both of us 8 years ago and our children know our wishes. A copy is in our file at the doctor's office with extra copies available when needed. I don't want our children having to make that decision.
I would agree with Starling's views about the agitation issues in the days prior to that last breath. My mother died of AD. We had hospice for just 24 hours before she drifted away. I think somewhere she knew what Hospice was and wanted no part of it. In the 11 days before she died, my mom would sort of wave her arms about, as if something or someone was there. It was maybe some sort of restlessness. Then the two days before she died she was more quiet..and the cheyne stokes breathing was pronounced. In the end, she went gracefully, her last breath was like a butterfly lifting off in flight. Her younger brother went in a similar way due to AD. Now I face this awful disease with my husband..he was diagnosed last Oct.