A place to talk death and dying issues
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Hey Rosevalley,
I'm up at 5 AM with nausea and to poop.
Bowing down to the bowel gods who still keep my bowels open...no complaints about rising early.
As you know, we are moving in tandem with the ascites and implanted drain and approaching death with as much love and courage as we can muster.
Yes, sometimes these physical things are just plain miserable and it's all we can do to shine through as the loving spirits we are.
I joined bc.org because of you and others facing ascites and draining too...for real time connection and to reflect back to one another where we might be headed. I really hope I'm not headed for partial or full bowel obstruction, because I've already experienced both.
Although I explained a bit of my long breast cancer history, my medical problems began a few months after birth when I suffered, lo!, a complete bowel blockage due to a polyp the size of my adult fist that was then surgically removed along with half my colon. I've since had other partial blockages and what's called intussusception (bowel turning inside out on itself like a sock). So, it's been sorta a lifelong thing for me. But I too only like to barf when it's the best and only option.
Which brings me to - I was talking to my hospice nurse about bowel blockage, because it may be in my future too. I'm sharing some now, because some bit may be helpful for you or others to pick through and use when in similar situations.
They use NG tubes for sure and continue paracentesis procedures at home using a needle or our implanted drains (all comfort meds and medical supplies provided and delivered free of charge). IV and oral drugs for blockage include zofran, reglan, haldol, ativan, steroids, octreotide along with the pain killers. If symptoms are unrelenting, then this hospice uses IV palliative sedation for extreme suffering - bringing the patient below a state of consciousness until the body shuts down. (1,2 below)
We talked about ways we actually die and there were two take-home points that may be useful for you today.
1.) a soft landing is when all the organs shut down simultaneously.
2.) when a person doesn't eat, the body releases ketones and they smell like nail polish to outsiders. Inside they are having experiences of getting close to god and the divine. They are deliriously joyous. She likened this to religious fasting. btw, she said while not eating is a good way to go, not drinking is a rough road and she doesn't recommend it.
Rose, I so honor your living and dying, the choices you make. I hope you don't take any of this as giving directions or unwanted advice, just keeping you informed so you can choose what's best for your family and you now.
Rose, I really hope that someone can call your husband if we don't hear from you again. So many here love and care about you - yes a few respond in writing, but many more read & I guess you're in the loving, healing thoughts, wishes and prayers of many members. We are connected to you and if you just drop out of our lives without notice...well, you'll leave an even bigger hole in our hearts.
Rose, because you too do your research, I'm including a couple of references below.
As always, sending healing light and warmth your way.
gentle hugs too, Stephanie
* References:
(1) Though the results of the study report no benefit to octreotide in malignant bowel obstruction, if you scroll down, you'll see it's like chemo - it really works well for the few it does help.
http://www.geripal.org/2015/03/Does-octreotide-help-with-malignant-bowel-obstruction.html
(2) Octreotide is a somatostatin analogue that inhibits vasoactive intestinal polypeptide activity in the gut, thereby reducing gastric and pancreatic juices and water and electrolyte excretion in the lumen.3,16 It also reduces splanchnic blood flow, indirectly decreasing gut wall edema, peristalsis (and secondary abdominal cramping), and bile excretion. Octreotide has been shown to improve bowel obstruction symptoms, sometimes eliminating the need for surgery, or improving the outcome of surgery by minimizing gut wall damage such as necrosis. Palliative patients might even have reversal of the subocclusive process.7,16,17
Dexamethasone is not used systematically; however, it has added value as an anti-inflammatory by decreasing gut wall edema, thereby relieving some of the stenosis and decreasing the excretion of water into the lumen.7,18 Both of these actions can affect pain levels. It also has a central antiemetic effect.
Functional and partial obstructions require similar regimens of opioids, antiemetic drugs, and steroids, in addition to metoclopramide, a prokinetic of the stomach and small bowel. However, metoclopramide should be stopped immediately if it causes increased vomiting or abdominal cramping.
In my experience, when divided doses of the various medications used for relieving bowel obstruction do not appear helpful, a continuous infusion of these same medications might be more effective. There are compatibility charts of medications that can help determine which drugs can safely be added to the mix.3
Palliation of gastrointestinal obstruction
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Found this free full text NEJM article:
Comfort Care for Patients Dying in the Hospital
Craig D. Blinderman, M.D., and J. Andrew Billings, M.D.
N Engl J Med 2015; 373:2549-2561December 24, 2015DOI: 10.1056/NEJMra1411746
Here's the section on palliative sedation, but there are lots of other good tips about what's commonly done at EOL (end-of-life) in the USA.
Palliative Sedation to Unconsciousness at the End of Life
Palliative sedation to the point of unconsciousness is a treatment of last resort when distressing symptoms cannot be controlled despite expert consultation.83 It is widely recognized as an ethically appropriate approach in end-of-life care.84 The goal is to relieve refractory suffering, not to hasten death, and it should not be confused with physician-assisted dying or voluntary euthanasia. The patient or a legal surrogate must be in agreement that such an approach is justified. Consultation with specialists in palliative care, ethics, psychiatry, or other areas should be considered before a decision to initiate palliative sedation is made.
http://www.nejm.org/doi/full/10.1056/NEJMra1411746
There was an interesting commentary from Australia on the article that compares care approaches between different English-speaking countries:
"Interestingly the NEJM article does not refer to subcutaneous medications which are the mainstay of terminal care medication administration in Australia, New Zealand and the UK. Do US practitioners use less SC medication?"
http://palliverse.com/2015/12/30/review-article-concerning-hospital-end-of-life-care-in-nejm/
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Rosevalley, I am stunned, heartbroken! But I should support you. You have my heartfelt respect and admiration. No matter when and how you choose to exit, I wish you the best!
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Again, thank you Rosevalley for sharing your strength with us. I wish you peace and comfort in the coming days.
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I'm reading, I'm understanding. I am praying for pain free and comfortable days, I am keeping you all close to my heart.
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Rose, You're right: no one should have to suffer at end of life, especially given that there are options for care! Your description of your access to hospice care makes me incredibly sad and angry, because I have known of so many people who have received excellent, much needed care at end of life. And, yes, that includes a very dear and precious woman in my community who had a total bowel obstruction and remained in her home while receiving all the home hospice care she needed until she died. I visited her and her husband frequently. That you don't have access to these kinds of services is appalling. I realize that does not help you to get what you need, but I hope it reminds you that I, and so many others, care. Like others here, I hope your visit with your PCP goes as well as possible and you are able to come up with the best possible plan for achieving and maintaining comfort and peace. I realize accessing the "DWD" option may not be a quick process--perhaps a two week (?) waiting period and further assessment--but regardless of what you decide, I hope your most significant others will adjust to the idea that you need relief from suffering.
I hate to hear that your oncology practice is not helping you. I learned that none of the MOs in the three major practices in my area have any palliative care training, and most of them refer to hospice when palliative care is needed and defer to the medical director of hospice to manage care after hospice enrollment. The only official "palliative care program" in my area outside of hospice is through the local hospital, provided only when a person happens to be in the hospital for care, and consists solely of one nurse who focuses on education about the disease process before the person is discharged, then no follow-up in the community. So much more needs to be done in this country regarding palliative care!
Some of you may remember what we discussed earlier on this thread about DWD/physician aid in dying. I live in a state that will probably be one of the last to pass "DWD" legislation (I still hope for federal legislation that will allow this option for all), so I have spent some time learning about Compassion and Choices, which offers counseling and other interventions to assist a person with making plans that are consistent with her values and choices, including not to have suffering prolonged at end of life. Another thing I have done is educate myself about all the hospice options in my area. The last time I checked, not one had policy and protocol in place so that a person could have palliative sedation in the home. The nearest residential hospice program (more than an hour away) is prepared to offer palliative sedation though, but I would prefer to stay at home through end of life if possible. I don't think any one single person can manage all the responsibilities of caregiving without terrible effects on their mental, physical, and emotional health, so I have talked with my husband about the ways in which we will expand my circle of care so that he does not bear the burden alone. Plus, I want him to have the energy to focus on being with me in our partner relationship and not mainly as caregiver!
Stephanie, thanks so much for the additional information! I wish you the most comfort and peace possible as you learn more and more how to access your circle of support and move along in the last stage of life in such a meaningful, mindful, heartfelt way. Your genuineness and openness are greatly appreciated in this conversation.
Blondie, I am sorry to hear that you are dissatisfied with your hospice services. Every hospice is required to have a social worker, or other type of trained counselor, to help you to get all the hospice services you need. Will you consider talking to him or her in order to get more of the services that you need instead of accepting only what you have now? You have sounded over recent weeks to be in need of more services, which could make a big difference in your quality of life now. Please know that we keep you in our thoughts as well, even when we do not hear from you!
And like others here, I continue to hold M360, skylotus, hortense, and so many of you in my thoughts.
In lovingkindness to all, always....
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Rosevalley, I am so sorry to hear of all you are going through. It isn't right. I just want to add my voice to all the others and rail against the injustice of of denying you the iv meds you need.
And for the rest of it, I wish you peaceful days and comfortable nights, surrounded by love. I hope you do find someone who will help alleviate your pain and suffering. Just know that we are here surrounding you with loving light, holding you gently. I admire your courage and attitude, you are truly a wonderful, kind, loving, inspiring woman, mother and wife. You have touched my life with your grace and dignity, and your kind, candid and inspirational posts. Sending you gentle wishes, Rose
With love xx
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blondie. hugs. Hoping today is a better day for you mentally and physically
Rose - you have suffered long enough trying so hard to make it thru Christmas. You did it !!!! Not fair to ask you to continue to be so miserable when there isn't a viable solution to fix it. Iagree your oncology teamgets sn F- wish i could go in and give tem a piece of my mind. Very sorry to hear that we might not hear from you again. Just me being selfish. Do what you Need to. I wish your dh could let us know when you do die. I'll pm my cell # if you think he would leave me a message either text or voicemail. If not, I understand. Hoping you have ad your pcp appt and got more info on dwd meds and price. I'll continue to pray for you and your family. I love you and you have truly made a difference in my life. I fear death alot less now thanks to your open honesty. No telling how many lives you have touched here. Between regular posters who have told you the same and lurkers who you may never know you touched. You mattered and your life made a difference to many. Esp those wonderful dd's you adopted. You showed them love that they may have never known. Your compassion and patience has brought them up so much further then anyone ever expected right ? Theycan do more for themselves and have learned so much. Thanks to you that is awesome! You rock! You are one strong, courageous woman. I hope when my time comes closer to an end that I can show half your strength. ( tears streaming down my face - can't see keyboard)
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Rose,
My mother had a bowel obstruction this past summer (due to cancer) with symptoms very similar to yours. The doctors told her they couldn't operate, and she was absolutely miserable. They tried an ng tube, but it hurt her throat and she couldn't tolerate it. The palliative care doctors then suggested placing a tube in her side that could drain her stomach contents when she felt uncomfortable and so that she wouldn't vomit up what she ate or drank. It was a quick surgical procedure to have the drain placed. After that, my mom never vomited again. We used a magic bullet to puree food for her, she drank as she felt thirsty and developed a particular fondness for orange popsicles, which seemed to quench her thirst better than anything else. Ultimately, she was placed on home hospice, and she was comfortable throughout because of the tube. She didn't feel bloated, didn't vomit, and never felt thirsty or hungry. Perhaps the tube is an option for you too?
My thoughts are with you. Prayers for continued peace and comfort.
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rose valley, if this is the end of your posts, I will miss them. You've brought incredible insight to D & D. We will all face it one day. Xo letrange
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RoseValley - like April, many of us who aren't quite there yet have followed this thread for a long time. Thank you so much for all you've given to everyone. I don't want to intrude either, but wish you well on your coming journey. If your DH can't let go, I hope you can find a friend to see you through. May you find a way for it to be peaceful. You'll be in all of our thoughts.
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.............. .......................................Today we live
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Good morning Rosevalley, my morning nausea buddy.
While you're often in my loving, healing thoughts, I wanted you to know that I'm so very thankful to you this morning!
Because you mentioned draining a liter of ascites daily through your implanted drain, I approached my hospice drain about more frequent draining. I've been doing two liters every other day for 4+ months.
They said okay, but with warning of risk of infection. Since it's an exit-only system, I'm not worried about infection, but this infernal nausea, hiccuping, discomfort, etc.
The experiment begins today and you are the impetus, dear Rosevalley.
So much gratitude and good wishes for you!
love and a hug too, Stephanie
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I did a message on Governor Browns web site. Suggested they come here and get a handle on the problem.
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Rosie u need a patient advocate how can we figure out how to get one for u sassie ur on
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Blondie you are brilliant. The link below is to Governor Kate Brown. 'request assistance page'. I left a message on the 31st. Would have done it earlier, but didn't think of it. I did ask Rosie many time over the last year if she wanted something done. She did refuse it. But any here could make the decision to post to the governor or not, in light of the fact she refused help before. I've already stuck my foot into a cowcake with her.
We know she was a government employee(right?) . She lives in Portland. She is covered by Providence insurance that runs state health insurance. They don't cover the DWD pill. Hospice benefits aren't equal to other Hospices. Those are the essential facts.
If we barrage the governors web site that will get more action than one post. The governor doesn't need to know Rosie's real name to act on this. (thank you Blondie). The governor can contact Providence directly and intervene in that direction. Asking Brown to get immediate approval for the DWD pill, so Rosie can die in peace. I do see that this could happen. The Hospice thing will take a year to fix. Not so the pill. We all believe that Providence hasn't the right to go against state mandate law. I'm guessing the governor will jump all over this. Hope I'm right.
http://www.oregon.gov/gov/Pages/request-assistance.aspx
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Done
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Brenda, Good. I sent a second message today. Thinking if we clog up their system they will act to get us to stop messaging them.
I put my message under Health(from the drop down box) What did you use?
Granted no one's watching the store until Monday. But then all these messages will be there.
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I'd add, Bon, that in Vermont, at least, the patient must not be in a hospital (and possibly not a hospice facility or nursing home). This is not specified in the law, but I believe all the hospitals have established this policy. The law does state that the patient must be able to self-administer the drug/s.
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Well Rosie was pissed with me for another reason, actually a bunch.
I posted this on IT " Rosie, soory, Managed to piss off even more folks by the governor contact. May not make change for you, but can't conceive Governor Brown won't be pissed that a government contractor fails to follow the state law."
Soory was intentionally written soory. She expressed one time she hated the word sorry. I misspelled it intentionally. It was my clue to her that it meant something.
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well you got that right Sas, what a sloppy ship he runs
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Hi, Mari, Governor Brown is Kate Brown. Actually hoping that it helps she 's female. But gender shouldn't be an issue. The law passed. Shouldn't be a matter of who the insurance vendor is, they should have followed the laws of the state. No choice. Can't conceive they had created their no coverage rules. This may be too late too help Rose. But it can help others in that state..
It would seem the governor can come out and say the insurance vendor follows the state law or looses the contract. Immediacy on DWD. Give them 30 days on other differences. Require the other vendors to pick up all the people if Providence doesn't comply.
Big believer in the one system like Medicare since 2009-20010 and subsidiaries. At least in my region, I've not experienced screw-ups.
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We must be careful not to let our compassion for someone, our distress about their situation, and our feelings of helplessness and desire to make a difference override our respect for someone's privacy and dignity. If I wished to act on someone's behalf, I would ask that person if she needed and wished me to do so before acting. If her answer was "no," I would respect her right to make that choice and I would not act on her behalf. There are many ways for us to act as advocates without jeopardizing the trust that has been placed in us. Hoping for clarity, respect, and right action and use of power. Kindly,
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Okay--here. Overall to the governor as a generality of why Providence could denie DWD --no. , but I'll take the talk off this thread.
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I know this thread has been quite for the last few days as we each think of Rose and the others that are reaching the end of living their lives to the fullest.
I wish that someone could post here that has a way with words a tribute to our Rose while she is with us. I think that it would ease her heart and all of ours as we look here everyday for just one more word even though we know she is no longer posting.
So if you are the one...please do go for it. It doesn't have to be perfect
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Rosevalley, you are in my thoughts. Constantly thinking of you. Wish you the best.
Beatmon, you are very kind to invite a composition of the tribute to Rosevalley. Thank you. Hopefully someone who knows Rosevalley for a longer time would do it beautifully. Or, a separate topic so may can participate? I am not sure if I could get people's attention. I just started a topic about a research news which drew very little attention.
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Blondie and Rosevalley,
You're both in my thoughts this morning ,,, maybe that's why I woke up so early. Hoping for a pain free day for each of you
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Little update on me, I'm doing really well with my slow dying trajectory. Lots of practice due to slow living, thanks to my rare genetic condition and so many years with breast cancer. Witnessing my body unfold from the inside can be a little freaky at times and I'm seeing my oncologist today after 5 weeks. Hospice says, no labs or tests, so our conversation will be mostly about how I feel and ways I might improve my usual symptoms of pain, nausea, fullness, liver uck, feeling hungover and sleeping a whole lot.
He's been my oncologist for 23.5 years and our visit will be mostly a love fest, because much of his advice is conventional medicine, though some is very practical. Example: I've lost so much flesh and muscle with the cachexia and he's prescribed topical testosterone to keep me physically strong and living independently. For a while, the testosterone even helped with cancer.
Another thing we tried was 2 years of estrogen for ER+ cancer and I got two unexpected years with a pretty good QOL.
I'm so happy my hospice allows me to continue seeing him. Giving him up before I'm dead would be a huge loss for me.
Back when I was a volunteer hospital chaplain, folks would tell me they were doing fine and I'd answer, "fine-fine or fine-considering-everything?" They'd usually chuckle and open up their hearts and stories a bit about how they were fine-considering-everything.
I am too...just that there's a lot to consider now.
Joining hands in love with all who are in similar situations. And reaching too for those who love and support us.
Thank you, Stephanie
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Wanted to post this for those who need/want a vision of dying with peace and dignity:
The American Journal of Nursing's "The Dying Patient's Bill of Rights"
To be treated as a living human being until death.
To maintain a sense of hopefulness, however changing its focus may be.
To be cared for by those who can maintain a sense of hopefulness, however changing this might be.
To express feelings and emotions about approaching death in your own way.
To participate in decisions concerning your care.
To expect continuing medical and nursing attention even though "cure" goals have been changed to "comfort" goals.
Not to die alone.
To be free from pain.
To have your questions answered honestly.
Not to be deceived.
To have help accepting death.
To die in peace and dignity.
To retain individuality and not be judged for decisions that may be contrary to the beliefs of others.
To discuss and enlarge religious and/or spiritual experiences.
To expect that the sanctity of the human body will be respected after death.
To be cared for by caring, sensitive, knowledgeable people who will attempt to understand your needs. (2)
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I personally believe that there are many ways to have a dignified death that doesn't include aid-in-dying and am a big proponent of both palliative and hospice care. Also, I believe that death, like birth, is intrinsically a labor, often physically messy & uncomfortable, but no less dignified than birth. They're both transitions.
I'm also fascinated by cultural changes around DWD and have contributed to this conversation on physician assisted termination of life at Smart Patients:
(free registration required)
Blessings, Stephanie
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