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Topic: Palliative Sedation

Forum: Palliative Therapy/Hospice Care — A unique forum ONLY for those trying to live well and/or trying to die well.

Posted on: Mar 21, 2011 01:13PM

katie11 wrote:

I have had several conversations with my future palliative care team and my main concern about this stage of the journey is pain control. I suspect this is on many of our minds. One option that's been voiced is that of palliative sedation which is basically a medically induced sleep/coma that would allow you to drift, hopefully, from sleep into a peaceful death. The decision to carry out the procedure would be made by my doctor based on physical and/or pyschological suffering by the patient but I have already told my doctor this is what I would hope for when enough is enough. I was wondering if anyone has any experience of a loved one making this choice and, if so, if you would mind sharing?

My intention is to die at home.

Thank you!

Katie

Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Mar 21, 2011 01:58PM barbe1958 wrote:

We did this for both our parents as they were dying. My Mom was in a coma but would still twitch with pain. We asked her doctor if they couldn't just "overdose her on morphine". He said, he couldn't, but we could. He advised us to ask for a morphine shot every time we wanted and hospice (in the hospital) would administer it. So basically, she drifts off into oblivion and the morphine slows down her respiration until it finally stops. VERY, very peaceful! When my Dad was dying, (hospice in hospital) we did the same thing without asking. The nurses knew what we were doing....

Both my parents had peaceful, controlled passings. No drama or pain filled anguish. My Dad's only fear was pain and we assured him we wouldn't let him suffer (he wasn't at my Mom's death as they were divorced). So the point is no IV's feeding the body with sustenance, and morphine shots to keep you out of pain. When you advance enough to slip into a coma and your organs begin to shut down, more morphine. I've heard it said that cancer patients don't die of cancer, they die of starvation. It is our human will to survive, and some will fight to the end. The morphine makes it a very gentle experience.

I hope this gives you some peace. Much love, Barbe

Dx 12/10/2008, IDC: Papillary, Left, 1cm, Stage IB, 2/5 nodes, ER+/PR+, HER2- Surgery 12/15/2008 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Dx 2/4/2016, IDC: Papillary, Left, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/10/2016 Arimidex (anastrozole) Radiation Therapy 2/16/2016 Whole-breast: Lymph nodes, Chest wall
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Mar 21, 2011 03:46PM Latte wrote:

Like Barbe, we did this for my mum. She was in the hospice, and I knew she wasn't suffering, but my siblings and I were terribly upset over her last few days. I remember asking the nurse, who was also a friend of my mum's, if she could help her to die one night, because she was fighting to the end. The nurse explained to me that the morphine would do this, but that she couldn't intentionally give my mum too much. So she showed me how to increase the dosage on the pump, and my brothers and I decided when to do it and did it together. It was hard, but not as hard as watching her at the end.

If you have an option that your doctor is willing to help you in this way, and not make your family do it for you, then I definitely think it would be kinder to everyone involved.If your family are the ones who would need to administer it, then check that they are willing and able to do it, and that they know exactly at what stage you would want them to do it.

I hope this helps you prepare in the way that you want.

30 Dec 2012: It's back! Stage IV, bone mets to spine, hip, femur, rads, Zometa, Letrozole. May 2013: further spread to ribs, skull, iliac, plus suspicious spots in lung and liver. Clinical trial with taxol and carbo plus velaparib/placebo. Dx 5/3/2010, IDC, 2cm, Stage IIIC, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 6/4/2010 AC + T (Taxol) Surgery 10/28/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 12/12/2010 Breast, Lymph nodes Surgery 3/16/2011 Prophylactic ovary removal Hormonal Therapy 3/18/2011 Dx 12/30/2012, IDC, Stage IV, mets, ER+/PR-, HER2- Radiation Therapy 3/3/2013 Bone Hormonal Therapy 3/11/2013 Femara (letrozole) Chemotherapy 5/14/2013 Carboplatin (Paraplatin), Taxol (paclitaxel)
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Mar 21, 2011 08:57PM - edited Mar 21, 2011 09:06PM by alligans

My dad died while sedated with a morphine drip due to breathing problems, agitation, and severe pain.  This was the first time in almost 1 year that he had no pain.  For him, this was a blessing. 

I'm not sure about the starvation comment.  Usually by the time you are given palliative sedation you are not eating or eating a very limited amount and not drinking much.  The body starts to not want food as it starts to shut down.  Patients are not starved to death.  Eating during the active phase of dying usually causes more harm than good as the body can no longer process and void the food.  Dehydration does occur, however.

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Mar 22, 2011 03:50AM katie11 wrote:

Thank you all so much for sharing your stories with me. Palliative sedation is legal in the Netherlands so would be carried out by the doctor. However, my understanding is they administer enough morphine to keep you in a coma until you die naturally rather than ending your life for you. Euthanasia is also legal here but I am not sure I have the courage to face that. What to do?

Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Mar 22, 2011 03:56AM Latte wrote:

Hi Katie,

I didn't realize you are in the Netherlands, so that is good. I would suggest you find out generally how long the coma lasts - I think it would make a difference to your loved ones if it is up to a few weeks, or could go on for a long time (for example, if they were keeping you hydrated intravenously). If you were my mother or sister, I would want the coma to last long enough to be able to say goodbye properly, but not to last too long (for my sake, rather than yours).

Wishing you strength with your decision,

Latte

30 Dec 2012: It's back! Stage IV, bone mets to spine, hip, femur, rads, Zometa, Letrozole. May 2013: further spread to ribs, skull, iliac, plus suspicious spots in lung and liver. Clinical trial with taxol and carbo plus velaparib/placebo. Dx 5/3/2010, IDC, 2cm, Stage IIIC, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 6/4/2010 AC + T (Taxol) Surgery 10/28/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 12/12/2010 Breast, Lymph nodes Surgery 3/16/2011 Prophylactic ovary removal Hormonal Therapy 3/18/2011 Dx 12/30/2012, IDC, Stage IV, mets, ER+/PR-, HER2- Radiation Therapy 3/3/2013 Bone Hormonal Therapy 3/11/2013 Femara (letrozole) Chemotherapy 5/14/2013 Carboplatin (Paraplatin), Taxol (paclitaxel)
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Mar 22, 2011 04:51AM - edited Mar 22, 2011 05:05AM by leaf

BTW, the meds they use do *not* have to be injectable.  When my friend was dying of pancreatic cancer (at her home) she got oral methadone and oral Ativan (lorazepam) that we would put bucally (between the teeth and the cheek) until she died.  (She certainly was not responding to anything for the last few days.  When she did get agitated (it didn't happen often - I was not there when it did - they'd give her more ativan. ) She died very peacefully. I doubt if she could swallow - I'd be afraid she could choke.  She did *not*  have any choking problems with buccal administration.)  If she needed other tablets (like famotidine=Pepcid), we'd crush them up and put some flavoring in it (she liked cherry and I got some cherry flavoring they use for snow cones.)  **Some oral medications can't be crushed, particularly time release medications or medications that are enteric coated so they aren't destroyed by stomach acid: check with your pharmacist.**  But methadone is quite long lasting (it has a very long half-life) and (in the USA) is available both by tablets and oral solution - its also available IV. 

My friend never complained of pain while she was on methadone (the last 6 months or so of her life.)  Before that, even on high doses of other narcotics, she said her pain score was 7/10 or more. I'm a big fan of methadone for neuropathic pain. The palliative care doc put almost everyone she saw for pain consults in the hospital on it. (I'm a hospital pharmacist and dispensed the methadone they use on the floors.)

My heart goes out to you as you make these plans.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 22, 2011 07:38AM barbe1958 wrote:

Alligans, the comment of starvation is just fact. It's true the dying body doesn't need food, but water is with held as well, as there is no IV fluids or sugars at all. It is not a cruel process, it's something we would naturally do if left alone. Just like an animal would go and find a hiding spot in the forest to die. The point is to let the body shut down on it's own with no intervention to delay the process. That's the way I want to be treated as I pass. Don't force anything on me except pain meds. We have that technology, thank God. It is hard to know that you could step in and provide fluid and nutrients to a dying person, but you are only delaying death at that point, not extending life.

Dx 12/10/2008, IDC: Papillary, Left, 1cm, Stage IB, 2/5 nodes, ER+/PR+, HER2- Surgery 12/15/2008 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Dx 2/4/2016, IDC: Papillary, Left, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/10/2016 Arimidex (anastrozole) Radiation Therapy 2/16/2016 Whole-breast: Lymph nodes, Chest wall
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Mar 22, 2011 07:42AM barbe1958 wrote:

Oh, I meant to say, my Mom took 5 days to pass once fully comatose, and my Dad took about 2 days. So there is time to talk to the person dying, to say good-bye and to offer your love. They both looked very peaceful and not agitated at all. Before my Dad "settled" he was in and out and was quite amusing. My sister told me to call her if he 'changed'. I called her to tell her he wasn't funny anymore and we knew the time was near. His last words (first words in a day) were to my DD when I was in the washroom. He said "I'll be going up in 24 hours." He died exactly 24 hours later.

Dx 12/10/2008, IDC: Papillary, Left, 1cm, Stage IB, 2/5 nodes, ER+/PR+, HER2- Surgery 12/15/2008 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Dx 2/4/2016, IDC: Papillary, Left, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/10/2016 Arimidex (anastrozole) Radiation Therapy 2/16/2016 Whole-breast: Lymph nodes, Chest wall
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Mar 22, 2011 09:30AM - edited Mar 22, 2011 09:42AM by alligans

I understand now.  I think I misunderstood what you were saying Barbe.  I just didn't want anyone to think that when patients are under palliative sedation that their families and doctors are intentionally starving them to death in the setting of a patient wanting to eat but unable to do so because they are sedated.  My dad had not truly eaten for 2 weeks when he was sedated with morphine.

If you read online there is a lot of controvery surrounding palliative sedation but I truly believe that it is a blessing under certain circumstances and doctors are very good at making sure those circumstances exist before administiring palliative sedation. 

Katie, one thing that I urge you to think about doing is letting your immediate family and caregivers know that you want this and also letting them in on any emotional turmoil that you may be in.  I feel that my dad died a very lonely man because he never let his wishes be known (no will, no advance directives, nothing...which left the decision making up to my mom).  He also never spoke about his fears.  Whenever he discussed the disease, it was only that he was in pain and wanted the doctors to fix the pain.  He never spoke about what was actually going on in his mind.  I can only imagine the emotional pain he was in.  I tried to get him to open up about 5 or 6 weeks before he died but he was closed up very tight.  When he died he was surrounded by us and was getting a lot of love but he was very alone in his mind which I think added to his emotional anguish.  Although I don't think anyone can truly understand what is going through someone's mind who is in this situation, opening up and not being afraid to talk about things that are scary and uncomfortable to talk about can relieve a lot of anxiety, pain, and heartbreak that both the patient and family are going through.  My dad passed a little bit over 2 months ago and I still feel horrible pain that he was very alone in his mind.  I can only imagine how scared he was to be dealing with all of this.  When he was finally placed on hospice care he was already in very bad shape and sedated due to agitation, confusion, and pain issues so he didn't even know what was happening to him.  He previously refused hospice care and didn't want to talk about it when I had brought it up.  His second oncologist tried to start this conversation with him as well but my dad shut him down pretty quickly and the oncologist moved on to fixing his pain.  I wish my dad had had the courage to openly discuss his feelings, goals, and wishes with us because I think that if he did his last months would of been a lot easier on him and on my family.  My advice, talk to your close family.  If you can, let them in.  Let them know what's going on in your mind.  Let them be there with you.  Make sure that you have everything in order.  My dad didn't have anything in order and my mom had to make all of the decision and arrangements.  She did it wonderfully but it was incrediably stressful.   

I feel that for two days that he was sedated, my dad's body and mind were finally at peace.  This peace made his passing easier on all of us, including him.  If he had not been sedated, his death would not of been a pretty site due to the fluid in his lungs, pain, agitation, constipation, and developing confusion.  The pain was non-existent and he was very calm.  I worried about him being sedated when I started reading about hospice months earlier but when that time actually came, there was a peace surrounding him.  I think the decision was an easy one to make for my mom because she watched his disease progress over the months.  My family was sad yet calm.  There was no drama and no pain.  When my mom said that his breathing was gurgly and the nurse was giving him some kind of medication to fix that I got worried about seeing the "death rattle" in person but it was not as bad as I had imagined.  I think it's because of the medication he was given.  The rattle was like a very calm and light snore.  I didn't find it upsetting but rather calming.  I was actually more upset about his breathing prior to the sedation and hospice.  His breathing pattern sounded very bad and upsetting.  For my dad's situation, I think that the sedation was the right choice.  Everyone is different and nobody can tell you if you should or shouldn't do this or what the right choice is.  It has to be the choice that your heart tells you to go with.  All of the issues surrounding palliative sedation are usually thoroughly discussed with the patient and their family before palliative sedation is administered so that everyone is educated about what happens.   

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Mar 22, 2011 09:49AM jakaba wrote:

Let's also make sure we understand.  There is a difference between palliative sedation and euthanasia.  Palliative sedation is basically keeping someone calm, comfortable, and usually asleep (coma) until death occurs.  Euthanasia involves administering enough of a drug to cause death.  Big difference.

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Mar 22, 2011 03:53PM barbe1958 wrote:

Yep jakaba, I'm pretty sure we're talking about the same thing. No one here has mentioned an injection that ends a life, but the continuation of morphine to keep the patient calm and pain free as the body shuts itself down.

I do believe in euthanasia, though, and wrote a thesis on it once that I was very proud of. In the end it is just the difference of whether any intervention is prolonging life, or prolonging death. In a terminal patient, it's an easy decision to make once they have lost QOL and the will to live. We will all reach that point if we are left to die of a disease rather than accident or crime.

I had terrific talks with my Dad near the end (reached my mother about an hour before she slipped into a permanent coma) and am glad that I did. He knew he was dying. He used to joke that he would die of constipation before he'd die of cancer. So now I know to keep my bowels moving. Another reason to not feed a dying person; the pain of elimination is too much to bear. He told him he was afraid of pain and I was able to assure him that we'd keep him pain free. I asked if he was scared and he said not really, he was interested to see what was next. I told him it was like he was going to another level and I wanted to go with him. He died in his 72nd year.

At one point in Palliative, he was alert enough to tell me he wanted water. Not that fancy water you know, the one that comes from the French alps. The one that when you spell it backwards tells you what you are. I knew he mean EVIAN. Too funny!!! My DD was standing near his bed wrapped up in a blanket as she was chilled. He said Who are you!! I'm Kim, she said. Oh, he said, You look like an Indian. He was a hoot! My DD and I stayed 2 nights with him and then he slipped deeper so I went home until he passed. I didn't need to see him dead. I saw my Mother dead.

Katie, I hope all this chit chat is what you were hoping for when you posted this topic. Most people won't talk about death, but as I've seen both parents pass I am very calm about it.

Dx 12/10/2008, IDC: Papillary, Left, 1cm, Stage IB, 2/5 nodes, ER+/PR+, HER2- Surgery 12/15/2008 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Dx 2/4/2016, IDC: Papillary, Left, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/10/2016 Arimidex (anastrozole) Radiation Therapy 2/16/2016 Whole-breast: Lymph nodes, Chest wall
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Mar 22, 2011 03:58PM chainsawz wrote:

I read somewhere here that ativan and fentayl are used in hospice at times.  I've asked my family to set me up on this when the time comes and let them know they can put me in a medically induced coma if I am in pain.  These things are so hard to think about, but I want to be comfortable and to make the decisions so my family doesn't have to. 

Lisa -mets to lungs & brain - clear lymph nodes.....the weakest step toward the top of the hill, toward sunrise, toward hope, is stronger than the fiercest storm. Dx 7/21/2008, IDC, 3cm, Stage IV, Grade 3, 0/2 nodes, mets, ER-/PR-, HER2+
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Mar 22, 2011 07:26PM barbe1958 wrote:

That's another good one Lisa, but involves 2 meds. I'd rather have the one shot. Like...do you need the Ativan now or the Fentanyl???

Dx 12/10/2008, IDC: Papillary, Left, 1cm, Stage IB, 2/5 nodes, ER+/PR+, HER2- Surgery 12/15/2008 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Dx 2/4/2016, IDC: Papillary, Left, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/10/2016 Arimidex (anastrozole) Radiation Therapy 2/16/2016 Whole-breast: Lymph nodes, Chest wall
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Mar 22, 2011 08:22PM - edited Mar 22, 2011 08:56PM by alligans

Here is a very interesting article on this topic.  I have to warn all of you that it's a hard and emotional article to read so you may or may not want to read it.  To this day I find the pictures more upsetting than the article.  Many issues are discussed from the drugs used all the way up to ethics.

You will also be able to find other articles within this New York Times series called "Months to Live".  Most of these articles deal with cancer.

http://www.nytimes.com/2009/12/27/health/27sedation.html

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Mar 22, 2011 10:07PM Traci-----TripNeg wrote:

(((((Katie))))))

Trip Neg BRCA + If I never look behind me, my troubles will be few. Supertramp. Dx 2/12/2007, IDC, 6cm+, Stage IIIB, Grade 3, 0/14 nodes, ER-/PR-, HER2-
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Mar 22, 2011 10:21PM imbell wrote:

My mother was 91 and had cancer (not sure where but it was somewhere in the pancreatic area. She had a stent. She was in palliative care for 4 weeks. The first 3 she acted like she was in a 4 star hotel. She had a private room, I stayed with her and she had daily baths which she had not been able to do at home).She talked a lot to everyone. Best thing I remember. The fourth week she required stronger medicine because of breakthrough pain. That medication put her in a coma. She wasn't tube feed as that would have been torture. She died while we were standing by her bed. We knew every step of the way how she was doing and she wasn't in pain (at least she never said anything to me and I was the one she talked to) I had guilt thinking we were starving her to death but she had a blockage and everytime I asked told me she wasn't hungry.

Dx 9/10/2009, IDC, 5cm, Stage IV, Grade 3, 5/17 nodes, ER+/PR+, HER2-
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Mar 22, 2011 10:29PM wonderfullymade wrote:

Katie,

May I first say, wow! You are an amazing woman and strong to be discussing your own final destination. I had the honor of being with both of my parents, who died within one week of eachother of met cancer, mom, bc, dad pancreatic. They were just 61 and 63. I was with them both till their last breathes. We used sublingual ativan and morphine. Honestly, my mother knew when she was ready. She always said, a lady knows when to leave the room. She climbed into bed, asked my sister and I to position her bed infront of the picture window. She picked her own bed clothes, and fell asleep. We managed her pain by watching her respirations and listening closely for any moans. We also watched her face for grimacing, but you know. We gave the meds close together to keep her sedated and she passed very peacefully and quite gracefully. Dad, suffered more though, at least I think so. I administered his " Last Dose" I pumped up the amount and gave it early. I must say, it was an honor to end his suffering, For a lifetime, they cared for my every pain, whimper, ache, broken heart. I do feel that you will know when you have reached that final journey home and those that know your soul will know too. I loved that mom spelled it out for me. I had no doubts and proceeded with her plan. I found amazing comfort in that. Dad did not know he was dying though. We found out he had met cancer when he had a stroke and he died a week later just a week before mom. I cant begin to tell you how amazingly peaceful my mom's passing was. just wanted to share. ((HUGS)) to you!
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Mar 22, 2011 10:34PM apple wrote:

I've been with hospice relatives more times than most people.  amazingly peaceful is the way to go and the way hospice is done around here.

the N Y times has awesome articles.  You have to be upfront with the hospice people.. but they know what to do.  Suffering is not cool.

peace and love, apple - ..... Mary Magdalen Dx 4/10/2008, IDC, 5cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+, HER2+
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Mar 22, 2011 11:03PM katie11 wrote:

You are all an amazing group of people! Thank you so much for sharing your experiences and information. The NYT article is fascinating and provides real insight into both the practical aspects of the methods and drugs used but also a good discussion of the ethical arguments. From the information so far, I feel strengthened in my resolve to take this option should the suffering become too much towards the end of life. Difficult though it is, it is obviously so important to make your intentions clear well in advance. I've already told my DH and palliative nurse know that this is what I would want. Now I need to talk to my GP (doctor).

My motto has always been, "hope for the best, prepare for the worst" and so everything else has been made clear to my family, including funeral arrangements, my hopes for my kids' futures and even where I want my ashes scattered (a favourite Italian lake)!

This is a great discussion! We may not like talking about it, but we must for everyone's sake.

Hugs to all!

Katie

Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Mar 23, 2011 11:03PM Lena wrote:

If I don't knock myself off first when the time comes (i.e., when I am no longer able to live independently; see impending diapers and drool), palliative sedation is how I'd like to go. Regarding euthanasia -- I wish it was legal. Then I wouldn't be so worried about wondering when I should be looking for and what to get so I can do it myself (I research intermittently; haven't made final decision yet) -- I wish I could just be able to call the doctor and have her "take care" of me when I consider it necessary.

Hell, we can take terminally ill pets to the vet to be "put to sleep" so they don't die horribly -- so since it's OK to help ANIMALS to not suffer, why in the world can't we be that nice to PEOPLE? GRRR! Honestly, this really pisses me off big time.

Why buy shampoo when you can get real poo for free? Dx 2/9/2009, IBC, 6cm+, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Mar 25, 2011 02:42AM katie11 wrote:

I agree with you Lena. Euthanasia is indeed legal here but, as you can imagine, there are very strict guidelines about how it is carried out. Like palliative sedation, the ultimate decision is that of the doctor based on the patient's wishes and clear evidence of emotional/physical suffering. That is why I am having all these conversations now with a palliative team. It's absolutely vital to make your end of life issues clear and have trust in those who will carry them out.

Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Mar 25, 2011 03:52PM barbe1958 wrote:

Lena, I hope you've understood from reading us that you CAN have it your way. You just have to have your caretakers/family on board to request your needs.

Dx 12/10/2008, IDC: Papillary, Left, 1cm, Stage IB, 2/5 nodes, ER+/PR+, HER2- Surgery 12/15/2008 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Dx 2/4/2016, IDC: Papillary, Left, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/10/2016 Arimidex (anastrozole) Radiation Therapy 2/16/2016 Whole-breast: Lymph nodes, Chest wall
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Mar 26, 2011 10:35PM BeckyOD wrote:

Katie, thanks for starting this discussion. I just began palliative care and have been confused about what I want, mostly because I haven't ever wanted to think about it. Silly, I know. Now I feel focused on my feelings and desires.
Both of my dear in-laws have passed in the last couple of years. Both put under palliative sedation and both passed very peacefully, and quickly (2 - 3 days). They never talked about their end of life wishes but we knew suffering was not acceptable.
I want that for me too, and for you.
Big hugs and lots of love to you Katie.

Dx 2/21/2005, Stage IV, 0/18 nodes, mets, ER+/PR-, HER2-
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Mar 27, 2011 02:42AM katie11 wrote:

Becky sweetie,

Have you stopped treatment? What's happening? I am still in active treatment though my health has been declining recently and I really need to start thinking about these things and, above all, making my wishes known.

You are right, this part of the journey is not at all easy to think about, let alone talk about, with others. It is so very important to have open discussions though so that all your wishes are in place. The palliative care nurse has been to speak to me at home several times now and the frank and open conversations have been extremely useful and helped calm some of my fears. He's been able to explain to me how the system works, who I need to convey my wishes to (my doctor will be taking care of my needs at the end), what options are available, pain relief etc. etc. It helps to prepare.

If pain becomes something that can no longer be managed, palliative sedation is the way I want to go. This discussion has helped persuade me that it can be a peaceful way to die. I hope it's useful to you, too! PM me if you need to!

Thinking of you!

Katie

Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Mar 28, 2011 07:19PM justjudie wrote:

Becky and Katie,

Thinking of you both.  Hoping Becky is not in pain.  Katie, you are very brave and very smart to make your decisions now.  Sending gentle hugs to both of you and wishing for the best for you.

Judie 

Judie Dx 3/31/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Mar 29, 2011 01:42AM ibcmets wrote:

Katie & Becky:  You are such strong women.  I've read many of your posts in the stage IV thread.  I just popped in to see how you are doing.  I pray that you both have a lot of time enjoying your family without any pain.  I'm also praying for Leanna (Velcro) who is travelling with her family.  She also has no more treatments that they can give her.  Sending hugs your way and will keep you in my prayers.

Terri

6/2009 stage IV diagnosis w bone mets ,Xgeva , 2015 brain mets, liver metastasis
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Mar 29, 2011 04:56PM Fitztwins wrote:

My motto has always been, "hope for the best, prepare for the worst" and so everything else has been made clear to my family, including funeral arrangements, my hopes for my kids' futures and even where I want my ashes scattered

These are my thoughts exactly.

Reading your thoughts and stories that everyone has shared really helps me a lot...It takes the scariness out of the process. We ALL have to go there (cancer or not)...Why not prepare for it?

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/18/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 1/31/2005 AC + T (Taxol) Radiation Therapy 4/30/2005 Breast, Lymph nodes Targeted Therapy 5/31/2005 Herceptin (trastuzumab) Hormonal Therapy 12/31/2005 Femara (letrozole) Hormonal Therapy 6/1/2008 Aromasin (exemestane) Targeted Therapy 6/30/2008 Herceptin (trastuzumab) Hormonal Therapy 6/14/2013 Arimidex (anastrozole) Targeted Therapy 9/4/2015 Perjeta (pertuzumab)
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Mar 29, 2011 09:17PM Annie62 wrote:

I haven't read the entire thread so forgive me if I'm repeating anything.

1. When my dad died from pancreatic cancer, he was in home hospice care. He was on morphine and he didn't slip into a 'coma' until the very very end, but with the morphine he was not in pain. While he was lucid, we were constantly checking his pain level verbally and he really was okay. They increased the frequency once he was non-responsive to make sure he was pain-free.

2. My brother passed this last weekend. When it was clear he could not survive and had been non-responsive for a long period, the hospital staff told us they would give him morphine every 15 minutes to make sure there were no pain issues. I think they would have moved on this sooner if we had told them too. I don't think he was in pain but there was no info on who had the power to make the decisions. We got the main family members to make the decison as a group which took a while. Next day we find his box of papers and I and my sibs had the powers (not kids and girlfriend) and could have saved lots of time. Thankfully I don't think my brother suffered because of this. I was there and I don't think he was in pain.  

 I think writing down you wishes and making sure it gets sent to executor and/or close family members is a good thing. I have this wrtten down but realized that I need morepeople other  than DH to have it in the event we are in an accident together. Re: executor. One of my other brothers is executor and he didn't even know it. So my long drawn out point is... make sure your wishes are known by a few close people.

 Sorry if this was long.

Annie

Stage IV 8/2012 Liver, brain, bone, mets. Halaven Past chemos:Carboplatin/VP16, Xgeva, Doxil, Gemzar, Navelbine, Xeloda, Faslodex Orig Dx 11/2004 St. IIIc IDC 11/19 nodes AC,Taxotere. Tamox, Aromasin. 2010 Abraxane and Gemzar, ER+/PR+ Her2- BRCA-
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Apr 1, 2011 05:10PM wonderfullymade wrote:

I just felt the need to offer all of you amazing and loving ladies love, hugs, prayers. peace, comfort, and courage as you travel through this journey! MUWAH!!!!!

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Apr 27, 2011 01:36AM cindoe wrote:

I was not as strong as most here who had a loved one pass. I didn't want her in pain by no means, but it was too hard to watch her not given food or water, and to be drugged into a coma. It was the best I know but it was hard cause you always think this is not the time. Maybe I'm just not a strong person cause it was hard to handle watching. So please tell your loved ones that this is what you want, it will not be as hard on them.

Love and Peace,

Cyn

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