A place to talk death and dying issues
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yes, I never heard that before but love it, if you can't get out of it get into it!
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I can't believe how liberating it was to simply lay out my final wished to my grown children! Nothing was a secret, but I wanted to make sure all three were on the same page, regarding my Living Will, Will and just type of final arrangements. I have big surgery next week, and my mind is at ease, knowing there will be no conflict if there has to be some decisions. I don't know why I put this off for so long. I like being proactive. There is so much we can't control, it's nice that there is this that we can. Wilsi
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Wilsie
So glad you feel good about your conversation with your kids. It is liberating to to put all your wishes and discuss this stuff. When my sister was visiting me for Thanksgiving we talked about hospice, my stuff (showed her where sll the info was) my wishes to donate my body which is already set up. I felt relief. My little sister has stepped up and she knows what to do which helps her not have to fumble around when my time comes.
Will be thinking about you on the surgery.
️Hugs and good wishes to all.
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Yes, it's surprising the relief that is felt when you make these kinds of choices. You might think it's depressing, but it's actually liberating. Dh and I both felt that way when we selected a cemetery, grave plot and both choose to be cremated. I am still not sure about funeral stuff like do I want a viewing or not, I am on the fence about it. And hope to get around to getting a head stone. The less decisions my loved ones have to make at my passing, the better, imo. Then they dont have residualguilt, like, oh, did I do things how she wanted them, or should I have done more.
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A heavy burden that I did not know I had has been lifted!
Wilsie
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Wilsie, glad your conversation went to well!
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Hi, all, it's been a rough week with the onc and chemo on Monday and the pulmonologist yesterday. I got the results of my lung capacity test and they weren't good. No wonder I'm breathless, duh! But it seemed pretty useless to give me a test with no end toward curative or palliative treatment. My GP is not big on pulmos. His statement to me was, "They don't DO anything." I felt that was true in this case.
The only thing the pulmo made me think about that I haven't thought about before was the end of my life as a series of hospital admissions BEFORE I'm in hospice. They think about this more than other docs because they deal with it more, and wanted to be sure I had all my directives in order so I didn't end up with treatment I didn't want. My husband and I both did them years ago and I need to revisit them. That's easy enough to do. But do we REALLY have to have a bunch of hospital admissions before we can stay home or go into a hospice and just be kept comfortable? The thought ot that really depresses me.
Anyway, I'm going to lunch and shopping with a friend so will try to "change the channel" in my mind for a while.
xoxoxoxoox
Calico
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Dear Calico,
We don't have to do anything www don't want. After reading everyone's post and searching myself, I think the issue and conflict is within ourselves. If we settle that...we settle all. Peace to you and your family. I hope your shopping trip went well! People are definitely a distraction!
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My thoughts are similar to Valerie's in that we have "issues and conflicts" we have to settle within ourselves. "When and how will I know that letting go of life prolonging goals and treatment is the right choice?" is a question for now and not later. Also "When and how do I make the choice of comfort care only?" And "How do I navigate the territory in between?"
If I'm pursuing life prolonging goals to the max, that may require hospital visits. How many visits/interventions are enough? Too many? What kinds of interventions am I likely to need for life prolonging goals? Am I clear about that? Do I consent to those at this point? If I start down that path, how will I recognize when enough is enough?
We may complete our advance directives thinking that settles the matter, but do we really understand what choices are likely to come our way and have we already developed some parameters for ourselves? Doing so may involve some frank conversations with our MDs, who may or may not have the willingness to enter into that type of conversation. Of course, that's a whole other issue.
Our goals, driven by our values, should drive this process--how our treatment and lives unfold. And we need to be clear about our goals and our values, recognizing that they may actually change over time. That way we remain as empowered as possible and are less likely to receive the interventions we don't want. Feeling/being empowered may just help us to die with dignity.
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Thank you, Valerie and Brendatrue, for your thoughts. I don't see how to avoid the horns of this dilemma. Part of the problem is I've never gone through the dying process before. This is uncharted territory. I have an uneasy feeling that as many times I revisit my advance directives and contemplate what I think I would want at this time, it still won't be adequate to address the realities of what may actually occur.
I almost feel like there needs to be a class or self-study exercise with various scenarios: 1) This is how I feel physically and emotionally at the time; 2) this is my level of consciousness at the time; 3) these are the available alternatives. For example, let's say I develop pneumonia and I'm struggling to breathe. I'm running a fever and feeling generally horrible. As a result, I'm suffering a great deal. The only way to alleviate the suffering is to treat the pneumonia which will have the consequence of extending my life, which is not my ultimate goal. Will I be able to withstand the level of suffering so that I may reach my ultimate goal of leaving the planet as quickly as possible? Or will the lesser of two evils at the time feel for me that I should be treated for the pneumonia? I don't feel it's possible at this time for me to know the answer to this. And what if my level of consciousness is low and my loved ones have to make the decision? If I don't know the answer now, how are they to know the answer then?
Maybe I don't understand how comfortable I can be made with only "comfort care". Perhaps "comfort care" can make me unconscious of my level of suffering. If that is true, then let the pneumonia take its course, and get me off the planet as soon as possible.
So, bottom line is I guess I have two possibly conflicting goals: 1) Leave the planet as quickly as possible; and 2) keep my level of suffering as low as possible.
It has been a helpful exercise just thinking this through. Thank you, everyone and breastcancer.org, for giving me a forum to do that.
xoxoxoxox
Calico
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I knew when it was time to stop treatment with no regrets 7/20/14. You all will know when the time is right, trust me..
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Thanks Blondie. I admire your courage to put an end to tx with no regret. I often pray that I have the courage and the strength to stop when the time comes. Perhaps, you just answered my prayers, I'll just know.... I had a discussion with my onc shortly after my dx that I will do everything I can BUT only with a doable QOL. She agreed to respect my wishes and that made me appreciate her even more.Linda
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Thank you Brenda and Calico four your insightful posts.
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I have brain mets. Had surgery and radiation a year ago. The lesion is back. In the time since my last surgery, I would rate my QOL at about a 4 out of 10. Constant headache, dizzy, nausea, can't drive, limited family, friends and money, constant tests and stress. I have been debating whether I want to do a second surgery/radiation with possibly worse SE or if I am ready to let go now. I am not afraid of dying but I am terrified of the time leading up to it. One thought I am circling around is that whether I do the surgery or not, the end is likely to be the same. So is the middle time worth it for me or is it time to begin the end? Right about now I wish I had a magic eight ball from the 80's to help me decide! lol0 -
Don't you wonder what it is about our culture and Western culture in general that makes us fear death? I mean when Eskimos knew it was time, they would go out on the ice (or so I read)- freezing to death -50 is supposed to be quite quick and humane. Many cultures just accept dying and prepare and rejoice in going to be with ancestors and loved ones. Look at the Day of the Dead in Mexico- a celebration of life and death. Sometimes I wonder if modern medicine has not given us the means to avoid death for a while and it isn't healthy to avoid the idea of death. I guess the feeling of we will beat it is a psychological lie. No one beats it! Your oncologist won't beat it either! I love that quote - "If you can't avoid it, get into it." Imagine dying, feel it, let go - feel all your feelings, explore them - cry and rejoice and think of the good things that will happen. What you don't understand - you fear. Then accept that no one ever knew what it was like to be born and yet we all did it. Look how fine it turned out. Now we are all bummed we will leave! None of us will ever know what it is like to die, until we do. It will be fine too.
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Tam,
I read your post with a heavy heart for what you are going through. I like your idea of a magic 8 ball! I used to be involved pretty heavily in a support group and the topic of when to stop treatment came up frequently. The answer most agreed upon was that it was best to give it your best shot so there would be no regrets later, to be able to say "I did everything I could possibly do." While I believe that response works in a lot of cases, I don't believe it takes into account the quality of life issues. After reading posts on this thread for a couple of years I have really come to respect a person's right to decide when it is time to just let it go. Like you, I am not afraid of dying. I just don't want to suffer along the way. I wish none of us had to ask these difficult questions but am thankful for this thread that allows us a place to discuss them. I wish you a pain free journey, no matter what choice you make.
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Oh Tam, that's a most devastating prognosis and a once in a lifetime decision.... Sometimes you have to surrender to win. Can you live in both skins for a while and see how they fit? We are all going to be there someday..you are not alone. Much love to you. You are in my heart!!! I'm thinking of you tonight
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Good morning Valerie5746, I saw your post concerning the side effects from Adriamycin. I had 4 rounds dose dense followed by Taxol. My last chemo was 11/25. I have heart damage from the Adriamycin, that is permanent. I now have 2 cardiologist and meds twice a day for life. It affected my EF function, and I have to go to a new ECHO every three months. But it is an uncommon side effect, but lucky me. Following my out patient mastectomy 12/15, I was admitted for 4 days because my blood pressure tanked to 70/34!! And it is still low. I hit 90/55 today. I did not have any issues or meds until I had BC, and triple negative to boot. I lost my hair, eyebrows, eyelashes, 1 fingernail, and I'm waiting for 5 toenails to go. So I'm gonna die, I get it and I am ok with that. But I feel like I am going one piece at a time. And I spent 8 months of tests, chemo, surgery, and rads start next week. Geez. And I know I have a lot of company with issues far worse than I have. And the kicker, back to chemo after all that. I cannot have Adriamycin or Taxol again. And the tumor grew back on the Taxol. So quality of life?? Any thoughts or advice??
I told my brother when I was diagnosed in July, and when I talked to him last week he acted like all of this was new news. He said it sounded bad. Really? I guess denial, freaked out, who knows. But I crack jokes, live each day, and hope. I have read so many posts, and I have learned so much from all of you. But with my cancer I know what my end will be, and about when it may happen. All I can do is get it together so I have zero regrets.
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up again also. Just a little light thinking on our minds tonight ? So much wisdom and all valid, human and amazing in it's clarity but fear of the unknown lives deep. I was thinking of that brave gal Brittany who chose her own way. I guess we all do but I don't want to do it without thinking about it, talking about and teaching the healthy ones I know and love how to die. I can't "teach" them but I can show them a well felt out option. I don't want to miss iteither. Let's keep talking and feeling until the time has past for that. Much love and ease of suffering .
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Hi, Rosevalley (such a pretty name). Going out on the ice, going to sleep, and not waking up, sounds like such a humane way to go. No hours of struggling for breath feeling terrified. Feeling terrified for hours is what I'm terrified of. I'm not one who wants to be as alert as possible, or be fully present, at the end. I want to be pleasantly sedated, free of anxiety.
Will my body and mind be of one mind, so to speak, at that time? Or will my body be panicking while my mind is saying, "Relax" and trying to calm the body down, telling it everything's OK as it is. I think the only thing I can do is to tell my loved ones and doctors that this is what I want: Keep me anxiety and pain free, even at the price of hastening my death, which is the DESIRED outcome at that point. Don't take interventions that extend my life, thereby extending my terror.
Will they know how to implement that? Surely, hospice nurses will "get" that. I know my husband will. I"ll just keep emphasizing this, knowing that at the end I will be powerless to control their actions, and that's what I'm ultimately afraid of the most: not being in control of my own fate. I am forced to trust others enormously to do for me what I will not be able to do for myself.
xoxoxox
Calico
P.S. With very few modifications, I have copied this into a Word document and will get it notarized and will distribute and discuss it with anyone involved in my care. I will have all the legal directives in place, but believe that this will ultimately say what's important in the most tangible way.
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Tam, praying for you. May your. pain be lessened and you find peace with whichever decision you make. Wilsie.
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Tam = you are in my thoughts and prayers. This is a decision we all will have to make and I know I consider it often I wish you peace in your decision
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Thank you all for your kind thoughts and insights
In some ways I have it easier than a lot of people. I have no kids, 1 cousin, an emotionally unavailable brother and an elderly friend that is in the beginning stages of dementia. The handful of others are more social friends. That makes it easier for me to let go. Funny that I am most concerned about appearing weak by letting go now. I don't have a "purpose" and I have very few interactions with the people in my life as all live far away and have their own lives. I still find beauty in moments but those are beginning to get overshadowed by the stress and pain. Valerie, I watched interviews of Brittany M and her husband too. I identified with her very much. I debate between living to the max now and letting go sooner. Or hold out as long as I can without the means and ability to do much. Go out with a bang or a whimper?? I asked my MD about hospice and she said if I do the surgery I may have up to another 8months so she wouldn't sign off on it. I tried a psychologist to help navigate these confusing waters of my relationships and feelings. She directed me towards "tapping" which is a kind of meditation and affirmation. Nice, but not the practical guidance and self examination I am after. May try another.
I am grateful for this site and the sisterhood to allow me a place to voice my thoughts and hear other outlooks. It helps a lot, thank you
Enough whining! How about the hot farmer bachelor???!!!
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Wilsie, If I remember correctly, today you are having surgery. You are in my thoughts, and my hope is you will have the best possible outcome!
Tam, you are definitely facing some intense challenges, and I hope you find support here. If the "tapping" intervention is the one I know of, I can see where it would not be particularly helpful with existential issues. Perhaps you can find someone who has some experience in working with those at end of life, whether it is a palliative care social worker or a private practitioner unaffiliated with a cancer/palliative program. I have found that there are many practitioners who are unprepared to explore these kind of issues and haven't dealt with the prospect of their own mortality sufficiently to help guide others in dealing with theirs.
Interesting comment about never having gone through dying/death before. My most immediate thought was to acknowledge the challenge we may anticipate in "getting our dying right." Years ago I read an article about there being "no one right way to die" and how every death doesn't have to feel "transcendent" to be meaningful; however, the author was quick to emphasize that most people do not want to suffer--on any number of realms (physical pain usually being at the top of the list)--and that not suffering was critical to a "good death." People want to die in comfort and with relative ease, and they wish to receive care from compassionate, helpful people, whether those be trusted loved ones or hospice team members or other care providers. My next thought was that millions and millions of people before us have died, so surely caring people have developed knowledge about what helps people to die in peace and comfort. How important it is to identify those we trust who will use their voices and their skills to insure that we end our lives with peaceful, comfortable deaths!
And a comment about the treatment of pneumonia and other challenges like that at end of life. I have known people who have not had pneumonia treated and have died comfortable deaths. I recall watching a special on end of life choices, and one of the MDs said that people may think about full code versus DNR or artificial hydration and nutrition, but they rarely think about such choices as the use of antibiotics, dialysis, blood transfusions, or meds to keep their blood pressure up. I've been really clear with my husband that when I am in the midst of the end stage of my life, I do not want such interventions. How many people even realize they may need to make choices like that? Much less communicate their wishes in those areas?
Finally, I wonder what most people have available in terms of palliative care options. Many times the path we take to the end of our lives can be made so much more comfortable and manageable if we receive good palliative care even before we make the choice about hospice care. At my local hospital the palliative care program consists of only one RN, who has no certification in palliative care, worked in CCU for years, then worked in hospice care for a while. She focuses on education about illness and possible future choices one might have to make. Her heart is really invested in her role, but her skill set is limited. I am curious about how many of you are accessing palliative care services and whether those have been helpful to you?
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Brenda you raise an excellent question that I would LOVE to know the answer too! How many folks on the boards use pallative care MDs and how do they feel about it. I mean I know they are not available everywhere, a new and limited supply of them. It seems they would be in high demand and that they would make an enormous difference in keeping with treatment. I know myself I have quit AMA because of side effects not being addressed. My compliance went out the window. It's common. What if SE were treated more aggressively and even if you are "terminal," you are a happier camper along the way there! Seems reasonable and something everyone would want. Would those who use palliative care Docs talk about their experiences.
Tam I am sorry about the circumstances and progression. You seem to have much grace and strength. I would find a therapist that works more on end of life issues, I kind of agree with Brenda. I have seen many people die (working in various settings) and there are so many different responses and manners and behaviors. It's as variable as people are, culture and religion plays a big role too. I figure all these various souls did their thing and for them it was right. I can not judge. I do feel sorry to see those that fight and are very conflicted and in distress/ denial. That's hard to watch. What ever path you choose will be the right one for you and if it doesn't fit - change it until it feels right. I live in Oregon so we have the DWDA. Brittany Maynard's comments are pretty amazing. Thank you for sharing your journey.
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Tam, I wish you peace in whatever decision you make. It does seem worth it to try to find a therapist that works more with end of life issues.
Brenda, your insights are appreciated again.
I am ignorant in palliative care MDs or RNs at my cancer center or nearby.
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Look up "death with dignity"... Gives us some answers.
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Tam, I wish you peace and comfort. This is not easy.
l was referred to palliative care doc in the hospital immediately after diagnosis and was terrified. I had a mixed experience as I was also referred to a pain management doc and there was huge confusion in treatment and drug prescriptions. I was also linked into palliative care in the home and hospice. I felt that the home care team had written me off and indeed they had as one of the nurses subsequently told me they didn't think I'd last past my first Xmas! However the support they gave me was helpful and it was comforting for the family to have another resource. A nurse called to the house every week to check up on how I was and they put me in touch with hospice. I was able to tell them how I wanted to die - no pain, no intervention.
I Attended a ten week course in the hospice where one could access services like hydrotherapy, physiotherapy, massage etc. This was a very upsetting experience as of the ten people I started the course with at least four sadly died and the others were gradually taken into the hospice. I was the last man standing. The deaths of Two women in particular really hurt and it was all very depressing and scary. Initially it was helpful to meet up with others with a terminal diagnosis and to have occasional real chats. There were volunteers in the canteen who would keep us company at lunch (horrible food) and I felt like a freak. I decided that this is not how I want to spend my time and I dropped out.
The home palliative care team no longer call but I know they are just a phone call away if I need them. I think it's good to make contact them and then see what stage you are at yourself and what your needs are. I'm No longer frightened of the words 'palliative care '. I wish though that there was more joined up thinking between pain management and palliative car
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While reading about the upcoming Frontline special "Being Mortal," I was struck by Dr. Atul Gawande's statement: “Hope is not a plan. We find from our trials that we are literally inflicting therapies on people that shorten their lives and increase their suffering, due to an inability to come to good decisions.”
I thought many of you might be interested in viewing this program, which airs Tuesday, February 10th on PBS and is available through other platforms. I know I plan to watch it!
Being Mortal pbs.org/frontline/being-mortal
Tuesday, Feb. 10, 2015, at 10 p.m. ET on PBS (check local listings)
www.facebook.com/frontline | Twitter: @frontlinepbs #BeingMortal
Instagram: @frontlinepbs | YouTube: youtube.com/frontlineDeath is something we will all one day face. So why is it so hard for doctors to talk about dying with their patients? And how can the medical profession better help people navigate the final chapters of their lives with confidence, direction and purpose?
Renowned surgeon and New Yorker writer Atul Gawande explored those questions in his bestselling book, Being Mortal (Oct. 7, 2014; Metropolitan Books). Now, Gawande teams with FRONTLINE (PBS) on a Feb. 10 documentary that brings his personal journey — and the stories of his patients and their families — to life, and that challenges us all to reexamine how we think about death and dying.
“You don’t have to spend much time with the elderly or those with terminal illness to see, over and over and over again, how medicine fails the people it is supposed to help,” says Gawande, who practices at Brigham and Women’s Hospital and Dana-Farber Cancer Institute in Boston.
“Hope is not a plan,” Gawande adds. “We find from our trials that we are literally inflicting therapies on people that shorten their lives and increase their suffering, due to an inability to come to good decisions.”
Three years in the making, the Being Mortal film explores the relationships between doctors and patients nearing the end of life, and shows how many doctors – including Gawande – struggle to talk honestly and openly with their patients who are dying. From the Indian hometown of Gawande’s father, whose prolonged dying process catalyzed Gawande’s quest to better understand end-of-life care, to the bedsides of patients in Boston who are navigating the ends of their lives, Being Mortal is an intimate and revealing journey with relevance to us all.
The film — directed by Tom Jennings, who previously teamed with Gawande on the 2011 FRONTLINE film Dr. Hotspot — also explores the burgeoning art and science of palliative care, and the ways in which having a conversation around the question “What are your priorities if your time is limited?” can empower patients to live their lives fully.
There will be a multitude of ways to experience Being Mortal: the longform documentary film premiering Feb. 10 on PBS and online, shortform original video on FRONTLINE’s YouTube channel, in-depth FRONTLINE radio features, additional original journalism on FRONTLINE’s website, and Gawande’s book.
All told, the multiplatform Being Mortal project will shine an unprecedented spotlight on how patients, families and doctors all experience the end stages of life, and encourage a national conversation about how to live life to the fullest extent possible.
The ultimate goal, after all, is not a good death but a good life — all the way to the very end.
Being Mortal airs Tuesday, February 10 at 10 p.m. on PBS (check local listings) and will stream in full, for free, online at pbs.org/frontline.
http://www.pbs.org/wgbh/pages/frontline/health-science-technology/being-mortal/press-release-frontline-teams-with-atul-gawande-to-explore-being-mortal/
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Tam as someone who decideed to stop chemo i get everything u say. Don't know hoe u decide what 2 do. Whatever u r gut tells u or list pros n cons. U have to feel comfortable in u r decision n do whatever 4 u not 4 anybody else. I hope u have a good support system, if not we can b it..
Take care
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