A place to talk death and dying issues
Comments
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Hi, all, I don't know for sure if the link below will work, but I don't think I'm being presumptuous when I say the article and how it's presented are certainly pertinent to us. It's basically 3 scenarios/arguments made by a general internist, an oncologist, and a palliative care doctor. You might want to read it to see if it sparks any questions you want to ask your providers.
It comes at a particularly apropos time for me as I just had "the conversation" with my onc on this subject (see my post dated Feb 9th).
New England Journal of Medicine Article on Who Should Coordinate End of Life
The article actually calls it the "goals of care" talk, but it struck me as going beyond that.
xoxoxoxox
Calico
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Good evening Ladies, I was wondering if anyone has chosen to donate their body for research? I am considering this since I am triple negative Stage IV, and I have mets. If they can use it for anything to move the research and treatment along for triple negative, I feel that it would be a good thing. I am a patient at a major teaching hospital, and they do a lot of research there as well. I think it could be a benefit knowing that my case may help other triple negative BC patients, it could save lives, and it justifies my "investment" to help Doctors become better. Any thoughts??
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Beachbum, I have arranged to donate my body here in Maryland. I had just been to the funeral of my BFF's husband and got a grasp on how much was spent on the casket, fu real home, etc, seemed like such a waste for a widow to spend $ that way. I decided then and there that I wasn't going that route. After I was approved I wrote letters to my 3 adult kids explaining my choice. I didn't want them thinking my DH was being cheap. I had BC in 1987, a separate lung ca in 1989 and a recurrence of the BC (stage IV) in 2008. I figure they might be able to learn something from me!! When they are "finished" with their research they cremate what is left and send the ashes to my DH. I told my DH to spend $ on a catered celebration after a free memorial service at my church. One of my friends offered to hold it at her house since my house is pretty small. All DH has to do is pay for before and after cleaning and the caterer! I want people telling funny stories about me and laughing at the memories.
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Gatorgal, sounds like a great plan, and a party to celebrate your life, a great idea. I am triple negative so I am hoping that something good may come out of this, even if it is too late to help me. But I hate all of the trauma and drama that a funeral can bring at a time that more grief will do no good. I want to be cremated anyway, so I get my way. I want to be a beachbum forever, so it's my way to get that too. I will follow the waves upon the sand for eternity and be free.
Sadly we all must decide what we really want, but in my opinion, it is a blessing to have that choice. BC takes away so many choices, I am very glad to have the ability to decide for myself. It is very calming to have that control at the end. And I can decide before my judgement may be skewed by all of the drugs and treatments. Life was so much easier when I only had to choose between the red shoes or the blue shoes....
Thank you so much for sharing, I appreciate it.
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GatorGal, my body is going to Maryland's Anatomy Board too.
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Dunesleeper, I am making arrangements for my body to go to the Cleveland Clinic. My contribution to triple negative research.
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Beachbum, I have a funny, but true story to tell you as a lesson for family. Two men in my community took their mother's ashes to a local city lake and after a few thoughtful words, the not-so-bright son pitched the urn and all into the lake. Of course it sunk. The other son yelled in shocked disbelief, "it's illegal to do what what you just did", tried to find the urn and when they couldn't, left the lake. About a week later the urn washed up on shore, was traced by the sheriff to the sons who were arrested for illegally disposing of human remains, polluting etc. So please be very clear as to the proper disposal of your remains.
Freebird, how did you purchase life insurance? I have tried a number of companies and get turned down due to my cancer dx.
Amy
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AMYQ: I just got a very small amount just to cover my cremation....and keep my 5th wheel on the land I have until my Daughter's father comes to Idaho which I gave to him to live in..because he won't have a place here and we have been good even though we aren't together...but it's been getting alot closer since my dx...i just want him to be here for our daughter...he is in a much better place now......which he should be here within 3 yrs...but just want to be safe then sorry..
I went through Colonial Penn
There some policies that you can get with no medical questions...My premium is set and coverage never changes...it's called
Guaranteed Acceptance
I hope this helps...L&R Carla
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dunes keeper, I had such a funny picture pop into my mind when I read your post ... You and I together in some medical lab being prodded and probed on tables next to each other! My kids were appalled at first. "Mom, haven't you heard stories about what medical student's do to the bodies?" Actually, that would just go along with my sense of humor although I do hope to help med students in some way
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i am signed up with science care....check it out
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Thanks Freebird. I'm definitely going to check them out.
Amy
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AmyQ, thanks for the funny story. Always good to laugh no matter the subject! I have a sand urn that dissolves completely in water. At last something I can take with me......:) I just hope that being triple negative they can find something that helps stop this awful disease, so I am glad to donate my body for research. And it's free, so saves me a lot of money too!
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Beachbum, I so relate to your name btw. I chuckled when I heard the story on the news. I'm sure their beloved mother didn't expect to be pitched overboard urn and all, but rather lovingly sprinkled, Hollywood style. Reminds me of the story of Lupie Valez (for those Frasier fanatics)
Anyway, I am happy to see you are at peace with your decisions and wouldn't it be an amazing testament to have helped effect a cure?
Amy
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GatorGal, I had the same image. You made me laugh.
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Dunesleeper, I do hope that something GOOD comes from all this. My tumor is very invasive, regrew on Taxol very fast, I had surgery about 2 weeks after chemo, and who knows what it is doing now on rads. It's like trying to watch a 2 year old!!
But if it helps discover anything, I would be happy. I will be content forever on the beach!
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My Symptoms Management Doctor this week decided it's time for Methadone because it's longer lasting than the morphine 3x a day. Then he had me sign another paper besides the DNR, which is if I have a stroke or complications from chemo and I'm unable to speak for myself do I want continued chemo. Then he asked if I've decided on how I want to go. I stated that I'm looking into cremation with a wicker coffin or a cardboard box will be fine. I don't want the cost of a funeral or people gathering to cry over me. I will have it all paid for in advance. I've turned over my car and all my monies and accounts to my daughters, who take care of me 24/7 for the past six years. My sister will fly up and they will then take a nice afternoon trip out in the ocean and I will be disposed of among the whales. You see I have fossils that I'm told are thousands of years old of whale poop(they look like interesting rocks), no kidding that I've found along the ocean which are quite beautiful and I have them as a collection in my sun room. What I want is that I'm dumped out in the ocean, a whale takes in my ashes and then they take a dump, then years, decades from now someone will be walking along the coastline see this fossil and take it home and I will be admired as a rock that is interesting and talked about with wonder of where and what type of animal etc. did this rock originate from. I even hope that it's a different country from the area I'm disposed in. I'm serious about this and my family understands and will make sure that such is done. We disposed of my brother in law way out in the ocean where he loved to fish. My sister had necklaces made out some of his ashes for her and other family members who wanted one. I thought I would pass last year but the doctors kept me going. I'm just tired now and they can't control my cancer markers they are in the thousands and new tumors and organs struggling. Because of Ehlers Danlos Syndrome I've never been able to do radiation. I'm on oxygen 24/7, I keep losing salt and have had to have IV solution for such because it is so low I get hallucinations. Then when I had PET Scan my sugar levels were 52. My liver is not filtering well causing constant bladder infections. My moods are good and I'm at peace. My daughters after all these years of treatment and eight different chemo and too many surgeries to count, no longer want to discuss death. So I read this blog Dancing With Cancer and she mentioned a "Joy Jar" in which you put a slip of paper any time you feel joyful or a special thought so on those really bad days you can just look at the jar and realize that there has been joyful times, so I started one this week. I'm just tired, and ready to go.
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I think with the question of more treatment, is not always more time but less suffering.
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M360, I hope you find your way surrounded by love, peace, and joy with your daughters. Perhaps we will meet one day on a sun soaked white sand beach, and tumble along on a beautiful wave! I hope you have a comfortable weekend.
Happy Valentine's Day!
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I dont know nsme of song but it hsd in it " fly like an angel". if anyone knows the name please let me know.
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M360. Very well put.
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pgc091,
I'm not sure which song you're referring to, but if you google lyrics fly like an angel, several songs pop up. Maybe you'll find the one you're searching for.
~~Diane
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CalicoCat, sorry for the delay in reading the NEJM article about the 59yo woman with Stage IV breast ca who went to see her PCP to discuss
her status and treatment options, including possible choices that her sister might have to make in the future as her DPOA. The article is quite interesting, and I especially liked the way that the case study ended by saying that her PCP thinks she needs to “understand her prognosis more clearly and have a ‘goals of care’ conversation that explores her long-standing values.” I also liked the way that the article provided three essays by experts in the field, a PCP, an oncologist, and a palliative care MD, plus I found the 60 comments quite intriguing.I agree wholeheartedly that Palliative Care should be involved when a Stage IV diagnosis is given, and I wholeheartedly wish that highly skilled Palliative Care was available to me now. (As I’ve written here before, the only PC services available in my area are provided by an RN who sees clients while they are in hospital only. She is not part of a team—no PC MD, although an MD has to refer, of course—no PC social worker or counselor.) Although advance directives are very helpful in making one’s end of life wishes known, having Physician’s Orders, as part of the POLST—Physician’s Orders for Life Sustaining Treatment—Paradigm, in place for ensuring that a person’s wishes regarding specific treatments is known across the spectrum of medical providers increases the likelihood that one’s wishes will actually be respected. More and more states are developing laws that support this type of paradigm. Whether they’re called POLST, or MOLST, or POST, the process gives the client an opportunity to clarify with her MD her wishes for various life sustaining treatments, which then are transferred to Physician Orders.
I agree with the oncologist about having prognosis and end of life wishes conversations in stages. How distressed I would feel to be presented suddenly with “THE” conversation in which life sustaining treatment is no longer recommended and hospice care is. I know of that happening to many people, and it is one of the reasons that I initiate this type of conversation with my MDs. I know that many MDs won’t initiate it until there is no other choice. And I agree, as the oncologist’s essay states, that oncologists need to “step up to the plate,” noting the “shadow cast by an oncologist who ‘isn't available’ to talk, or the confusion engendered by an oncologist who implies that ‘the next drug’ might induce a tumor response while hanging crepe outside the examination room. These evasions are tantamount to abandonment, and they create iatrogenic suffering.” I also found one of the MD comments to be both forthright and scary: “In real life, neither the primary care physician nor the oncologist will have the discussion with the pt. The patient will end up in the ER, and the hospitalist will be the first one ever to talk to her about end of life in the middle of night.”
The idea of abandonment by one’s MD(s) is frightening, isn’t it? Although I would like to think that my MDs would confer with one another regarding my care, that’s not likely to happen, and I (and/or my surrogate decision maker) will have to piece together my conversations with each of my MDs to create a whole that I hope meets my needs. Ultimately I don’t think that I will focus so much on which discipline meets my needs the best but more so on which particular MD is the one with whom I have built a relationship of trust and mutual respect—the one I can rely on not to abandon me as I receive the care I need through the end of my life.
Thanks, CalicoCat, for recommending a very thought-provoking article!
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M360, sounds like you have your head on straight and have thought this all through. I hope the methadone brings you relief. I'm on a fentanyl patch that is working pretty well for me. I do get occasional break through pain So have Oxycodone available when I need it. Looks like we have done most of the same treatments. I'm on Carboplatin now.
I read the article calico cat posted as well. Very thought provoking. I actually had a chat with my oncologist last week just probing for his thoughts. He's been my Onc since 1987. He says I'm not going anywhere soon. I liked hearing that. I honestly never thought I'd be here this long once diagnosed stage IV but happy to know I have a few more beach vacations in my future. Beachbum and dunesleeper, i love the beach, too, and can never get enough of it.
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Hi, Brendatrue, I've been rolling this question around in my mind for some time about whether it would be my GP or onc or ? to be the ultimate one to usher me off the planet, landing me as painlessly and peacefully as possible into the next dimension. The article brought up all kinds of meaty bones to gnaw on.
I have envisioned late-night ambulance trips to the hospital and medical personnel of all sorts doing what they are trained to do: Keep me alive using any tools at their disposal, even if that's not what I want. I had heard about the Physician Orders for Life-Sustaining Treatment (POLST) form in California, but no doctor has never offered it to me for discussion. For those who don't know what this is, here is the CA website for what is used here:
From what I gather, if a patient has one of these on, say, their refrigerator, and the medics arrive, they will follow the orders on the POLST. If all I have is a Durable Power of Attorney for Health Care, and it says, "Do whatever my husband says you can do", that's not good enough. One basically needs both. The POLST is signed by a physician and is the physician orders.
No one has ever offered a Palliative Care specialist of any kind to me. My onc has always said "I'm your quarterback" and I believe he sees himself in that role. I trust this man to do what I want, and, as importantly, for his staff to execute any part of the plan they need to be involved in. Both these parts are critical. My GP is a great guy, but his staff is mediocre. I can see a lot of unreturned phone calls and miscommunications at very painful times if he's in the driver's seat.
I will ask my onc to sit down and go over the POLST with me. I just don't think I understand it well enough to do it without guidance.
One more thing we must become experts on that we never, ever wanted to have to be.
xoxooxox
Calico
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Calicocat,Just reread the end of life article you recommended. I hadn't taken the time to read the comments the first time around. Because I have had a relationship with my oncologist since 1987 (my first Cancer diagnosis) I would definitely WANT him to be the one to guide me to the end. I realize after reading and absorbing the article, that if I don't have the conversation with my family and onc it might not go down that way. I can just see the trip to the er and the hospitalist fumbling with words to discuss end of life with someone they have never met before. Ugh. Don't want that! I want my ONC to be the one to ease me into a hospice situation where I can stay at home and go peacefully with good drugs to keep me pain free. Seems that over the years of reading accounts of BCO sisters passings on BCO that many (most?) have done it that way. I can't even remember the last time I saw my PCP. If I'm sick with a cold, pneumonia, whatever, it's always my onc I call. I think my PCP gets copies of records and is aware of my situation but if she ran into me on the street she might not even recognize me!
Thanks for posting the article. It has alerted me to my part in the dying process and that is to talk to my family and onc so they all know what it is I want!
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I wonder if I will be as quick to see the signs of decline and dying in myself as I am to see them in others. While I was exploring some online information this morning, I came across this very short article and short (5+ minute) film about an emergency surgeon and a palliative care physician trying to help a very ill man and his wife cope with his very poor prognosis. “It’s Very Hard to Come to the Realization That You’re Dying” -- http://www.pbs.org/wgbh/pages/frontline/health-science-technology/being-mortal/dr-atul-gawande-hope-is-not-a-plan-when-doctors-patients-talk-death/
At that site, I also found a conversation between two MDs about around this topic: "Prolonging Life or Prolonging Death? Two Doctors on
Caring for the Critically Sick" http://www.pbs.org/wgbh/pages/frontline/health-science-technology/being-mortal/prolonging-life-or-prolonging-death-two-doctors-on-caring-for-the-critically-sick/ Here's one interesting comment from one of the MDs: "...The first is the question of quality of life. While the last thing I would ever want to do is judge what is an acceptable quality of life for a given individual, I think we need to attend to that concept carefully. If the best outcome we can expect for a patient is to be bedridden, institutionalized and dependent for all activities, we need to be certain that that is an outcome acceptable to that person.The important priority is the patient’s values and preferences; the simple objective of survival is not a sufficient goal." [my italics] And also: "The problem is that we also both know a much larger number of patients who do not emerge from critical illness, whom we treat aggressively with invasive, life-sustaining technologies, only for them to die after weeks of suffering. I remember one of my instructors during my critical care fellowship once saying, 'You have to work really hard on many to save a few.' While this clearly is true, it is not clear that it justifies the suffering and indignity borne by the many who will not be saved. At a minimum, we should be calibrating our treatments according to the patient’s previously articulated preferences, withholding aggressive treatments when they are not aligned with the patient’s goals." [again, my italics]I think it's challenging for us to try to determine the wide range of problems that might arise at the end of our lives, what treatment/care options we might face, and specifically what we would and would not want. Some things are obvious--DNR, feeding tube, ventilator, blood transfusions, etc.--while others are not. I don't know that it's even possible for us to imagine all the problems and options that we might face, and this is where I think it's especially important to help our medical providers to know us as people. And by this I mean, what are our values? What does it mean when we say we want a death with dignity? What do we mean when we say "quality of life trumps quantity of life" or "quantity of life trumps quality of life"? What distinctions do I make between "giving up" and "acceptance"? How do I insure that my MDs understand what is important to me, that they document it, that they remember to allow my values and preferences to guide their involvement in my end of life care? It's a constant process, for sure, and one that is best initiated earlier rather than later.
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And for those of you who may have missed the Being Mortal program on PBS (based in part on Dr. Atul Gawande's book of the same name), here is a link where you can watch the entire episode: http://www.pbs.org/wgbh/pages/frontline/being-mortal/. An interview with Dr. Gawande is available at http://www.pbs.org/wgbh/pages/frontline/health-science-technology/being-mortal/dr-atul-gawande-hope-is-not-a-plan-when-doctors-patients-talk-death/. I love Dr. Gawande's comment: "Hope is not a plan."
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Brendatrue, thank you for sharing such important information. I have been on both sides of quality and quantity with my parents. My Father passed away from a massive coronary 4 years after a triple bypass and enlarged heart. He had 4 great years, and went in a instant. I felt blessed that he had 4 great years, but still sad at his passing. My Mother has been in a nursing facility for 7 years with Alzheimer's disease. She is unable to care for herself, and is in a wheelchair/bed 24/7. She hasn't known me for years, and has very little memory left. It is so sad to see her like that. She was a teacher for 32 years, and very active. So while she has quantity, she has no way of knowing.
So now I am Stage 4 BC, and I see what my quality or quantity may be. It is so important to make sure that I make all of those decisions while I can, and be prepared for the day when my time here will come to an end. The end I choose for myself. It is very important to me that I enjoy quality over a life of quantity.
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Thank you, Gator Gal and Brendatrue and Beachgal for your comments and perspectives, and for passing along such great resources. I'm so grateful to have this board to come to and discuss these issues with. There is no one else in my life that I can talk to like this, and even if they want to help, they don't understand, or it's too difficult for them to deal with.
In addition to the POLST and POA for Healthcare, I've written a one-page letter saying I don't want to be kept alive, but just out of pain and anxiety-free, even if doing so hastens my death (i.e. DO NOT worry about overdosing me!). My husband understands this. I'm fortunate in that there is no one such as children or parents who would argue with him on this, so those are conversations I don't need to have.
So my onc is in my corner. My husband is in my corner. I'll finish up the documents and the law should be in my corner. That still leaves all the unknowns about all the other medical personnel who don't know me, and who have their own professional/medical/moral/religious beliefs that will naturally influence their decisions. I guess all I can do is pray that I don't end up with some over-zealous (fill in the blank) who insists on implementing their goals to keep me alive. I think they will be overpowered by the strength of the evidence, my onc, and my husband.
Thank you again, dear ones.
xoxooxoxox
Calico
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Hi, I just saw this in the NY Times, but I'm behind, so may be old news by now. It's nice to see a meaningful reduction in red tape.
Quicker Access to Experimental Drugs
xoxoxoxoxox
Calico
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