I want my DH with me even though I know it will break his heart to watch me die. I would want to be with him, holding him until he passed, so I know that's what he wants with me. The thought of him passing without me there, at least holding his hand and touching him just kills me.

I don't want the memory to be in our bed in our house, though. Call me crazy, but to me, that would be the harder memory. For the rest of his life he would be lying in the bed I died in?? No way. I don't want the house tainted with death. Yes, I know death is natural but so are other things that we keep separate. We're not the generation that gave birth in our homes nor the one that dies in our homes and holds wakes. If that is your custom, then of course you would do it.

My Mom worked for years on a hospice floor in a hospital and said it's very common for someone to pass when their loved one leaves the room. Many times she actually went to the elevator to call them back before they left as the person had passed already. Weird, eh? Perhaps they think they are saving the loved one from the pain of actually seeing you die......I want my DH there and will talk about it when I get there.

I'm not sure how many of you know the names Joey and Rory. In short, Joey and Rory were married for 14 years. They had a little girl, Indiana, two years ago. She has Down syndrome. Joey was dx with cervical cancer soon after Indiana was born. She passed away 18months after dx. Her husband Rory keeps an online journal call "One mans exraordinary, ordinary life." I don't know how to make a link, but to read his thoughts...they give me comfort. His latest post is about remembering his wife sick, bald, dying. Not able to remember her in their life before cancer.

Thank you all for sharing your stories, your lives

Barbe, I have seen many deaths as a nurse and I totally agree. I have seen family members sit at the bedside for hours upon hours and when they get up to go to the bathroom or get a drink, their loved one passes away. I always offer my opinion that the person loved them so much that they were trying to spare them the pain of watching their last breath. One of my patients who had been semiconscious for days, sat straight up in the bed and said "Oh my God it's beautiful" and then died. I never forgot that and it's very comforting

This May 23, 2016 medical journal article from American Society of Clinical Oncology is written in medical-speak, but reveals fairly dramatic statistics about how little cancer patients know and understand about our illness and life expectancy. This affects our decision making around treatments, life plans and end-of-life preparations. Without accurate understanding of what we're facing, we are vulnerable to poor choices and disappointment. Cancer isn't fair. It doesn't fight fair. And it doesn't always respond how we'd wish.

Being well-informed and preparing ourselves for a range of outcomes seems more prudent than expecting only the best, wanted outcomes for ourselves and our loved ones.

Not saying we'll all die soon, but if we don't face where we are now, it will be more and more difficult to face where we are later, if the disease progresses.

Healing regards for all, Stephanie

http://jco.ascopubs.org/content/early/2016/05/19/JCO.2015.63.6696.full

American Society of Clinical Oncology

Discussions of Life Expectancy and Changes in Illness Understanding in Patients With Advanced Cancer

Andrew S. Epstein, Holly G. Prigerson⇑, Eileen M. O'Reilly and Paul K. Maciejewski

+ Author Affiliations

Andrew S. Epstein, Eileen M. O'Reilly, Memorial Sloan Kettering Cancer Center; Holly G. Prigerson, Paul K. Maciejewski, Center for Research on End-of-Life Care, Cornell University; and Weill Cornell Medicine, New York, NY

Presented in abstract form at the 51st Annual Meeting of the American Society of Clinical Oncology (ASCO), Chicago, IL, May 29-June 2, 2015, and at the ASCO Palliative Care in Oncology Symposium, Boston, MA, October 9-10, 2015.

Abstract

Purpose: Accurate illness understanding enables patients to make informed decisions. Evidence of the influence of prognostic discussions on the accuracy of illness understanding by patients would demonstrate the value of discussions.

Methods: Recent and past oncology provider-patient discussions about prognosis/life expectancy were examined for their association with changes in illness understanding by patients. Patients (N = 178) with advanced cancers refractory to prior chemotherapy whom oncologists expected to die within 6 months were interviewed before and after a visit in which cancer restaging scan results were discussed. Illness understanding scores were the sum of four indicator variables: patient terminal illness acknowledgment, recognition of incurable disease status, knowledge of the advanced stage of the disease, and expectation to live months as opposed to years.

Results: Before the restaging scan visit, nine (5%) of 178 patients had completely accurate illness understanding (ie, correctly answered each of the four illness understanding questions). Eighteen patients (10%) reported only recent discussions of prognosis/life expectancy with their oncologists; 68 (38%) reported only past discussions; 24 (13%) reported both recent and past discussions; and 68 (38%) reported that they never had discussions of prognosis/life expectancy with their oncologists. After adjustment for potential confounders (ie, education and race/ethnicity), analysis identified significant, positive changes in illness understanding scores for patients in groups that reported recent only (least-squares mean change score, 0.62; 95% CI, 0.23 to 1.01; P = .002) and both recent and past (least-squares mean change score, 0.37; 95% CI, 0.04 to 0.70; P = 0.028) discussions of prognosis/life expectancy with their oncologists.

Conclusion Patients with advanced cancer who report recent discussions of prognosis/life expectancy with their oncologists come to have a better understanding of the terminal nature of their illnesses.

xxx

In pre- and post-scan interviews, patients were asked four questions that assessed their terminal illness acknowledgment (TIA), recognition of their incurable disease status, knowledge of the advanced stage of their disease, and expectation to live months as opposed to years. These elements of illness understanding were deemed by us to be essential for patients to make informed decisions about end-of-life care. Responses were coded 1 or 0 to indicate the presence or absence, respectively, of each of these elements of illness understanding by patients. These four indicators were then added together to construct summary scores (possible range, 0 to 4) to reflect illness understanding at the times of both the pre- and post-scan visit interviews. Differences between pre- and post-scan visit illness understanding scores (possible range, −4 to 4) were used to define changes in illness understanding by a patient between the pre- and post-scan visit interviews.

TIA was assessed with the question "How would you describe your current health status?" Response options were (1) relatively healthy, (2) relatively healthy and terminally ill, (3) seriously ill but not terminally ill, (4) seriously ill and terminally ill, and (5) do not know.

Recognition of an incurable disease status was assessed with the question "Which of the following best represents what your oncology providers have told you about a cure for your cancer?" Response options were (1) my cancer will be cured, (2) my cancer may be cured if treatments are successful, (3) my cancer cannot be cured but we will try to control the cancer with treatment, (4) my cancer cannot be cured and I am not able to have any additional cancer treatment, and (5) do not know.

Knowledge of advanced stage of cancer was assessed with the question "What stage is your cancer?" Responses were (1) no evidence of cancer, (2) early stage of cancer, (3) middle stage of cancer, (4) late stage of cancer, (5) end stage of cancer, and (6) do not know.

Expectation to live months as opposed to years was assessed with the question "Many patients have thoughts about how having cancer might affect their life expectancy, either on the basis of what their doctors have told them, what they have read, or just their own sense about how long they might live with cancer. When you think about this, do you think in terms of (select response)?" Response options were (1) months, (2) years, and (3) do not know.

xxx

DISCUSSION

Results of this study demonstrate how poorly patients with advanced cancer understand their prognoses and how effective recent prognostic discussions are to improve illness understanding by patients. All enrolled patients in this study had incurable cancer that was at an advanced stage (eg, late, stage IV gastrointestinal cancer) and a life expectancy of months, not years. A small minority of patients accurately, and completely, understood the gravity of their illnesses (eg, 5% endorsed each element of the terminal prognosis at study entry); approximately one in four (23%) reported only recent or recent and past discussion of prognosis with the oncologist. Patients who reported at least a recent discussion about prognosis with the oncology provider exhibited significant improvements in illness understanding. These results highlight the need for timely (ie, current) prognostic disclosures to terminally ill patients who meet the criteria used for this study. The results also suggest that oncologists should discuss prognosis on an ongoing basis, and as frequently as appropriate, with their terminally ill patients. If this occurred, patients would likely have better illness understanding and, thus, make more informed decisions about their end-of-life care.

These results are consistent with, and advance, the existing literature on illness understanding, prognostic disclosure, and advance care planning. The effect of recently reported prognostic discussions on improvements in illness understanding by patients is in line with the advance care planning strategy to regularly and dually address both dynamic medical situations and individual patient goals. This approach encourages medical decisions to be made in the moment instead of on the basis of advance directive documents, which can sometimes be nonspecific, outdated, or unavailable. Consideration of prognostic understanding as an evolving awareness of one's changing health empowers patients, their loved ones, and their healthcare team to make informed decisions. Furthermore, recognition of the need to update patients frequently about a prognosis may help patients and families who struggle to come to terms with the terminal nature of a disease.

In the delicate task of delivering prognoses, some have argued that the median informs the message, which argues for the use of a prognostic range such as months instead of communication of a specific time frame, such as 6 months to live. Outcomes research in strategies of communicating with both realism and hope for patients with serious illness is needed; statements, such as hoping for the best (eg, years of survival) while being prepared for the worst (eg, months left to live), during ongoing discussions of prognosis may be one way to achieve a balance. This report suggests that, regardless of the approach, the recency of the prognostic discussion matters for prognostic understanding by the patient. Future research is needed to identify the most effective ways to communicate prognostic information to ensure that patients have accurate illness understanding. Such insight seems to be a prerequisite for informed decision making.

Mominator, I'm so sorry for the loss of your friend. I read a post of yours the other day where you described how you and a friend shared mornings with Lori, taking care of her, and I was struck by the selflessness and beauty of that act. Lori was so fortunate to have you for a friend. My thoughts and prayers go out to you and to Lori's family.

Thank you, you've all been so kind. Mostly, I wanted to contribute to Jennifer's question on how we die, having watched my friend Lori die these last several months.

I remember one of Nana's hospice nurses saying that "we all die the same, and yet it's different, and still it's the same." As contrary as that sounds, there are many things that are the same as people die: the body breaks down, organs fail, certain symptoms are the same. There are some variations: not everyone will experience the same symptoms. When the end gets closer, certain other symptoms occur (labored breathing, cooling of the extremities). The hospice books are very helpful in that regards; also, talking with hospice nurses and aides. When Lori's breathing got labored on Tuesday morning, it was a sign that the end was very near.

I have a longer post on Lori's funeral, if you are interested. That is more along the lines of how someone will be remembered.

https://community.breastcancer.org/forum/144/topics/842954?page=1#post_4724416

Mominator

Barbe..the last word...so funny!

I'm a lifelong journalist, former copy editor and National Spelling Bee contestant. I've enjoyed toying with the idea of writing my own obituary, filled with factual errors and misspelled names. People who know me best would have a big laugh.

Ronda (Tarheel? Michelle?) - that is brilliant! I have been accused of being a grammar / spelling Nazi all my life and that would drive my kids nuts!. I homeschooled them and hammered spelling, grammar and even times tables into them.

I'm also having a hilarious time with music for my funeral. My favorite at the moment is "Always Look on the Bright Side" from Monty Python's Life of Brian. Or maybe "Ding Dong the Witch is Dead"

Whatever ends up, my funeral will not be serious, sombre or sad.

Sue MS

Oh Sue! I am imaging people listening to Ding Dong the Witch is Dead at MY funeral. I wonder if one or two of my daughters-in-law would stand up and sing along. I can't stop laughing. Thank you for making my day.

Lynne

I apologize if I already shared this here.

It''s one of the funniest obituaries I've ever read:

http://www.legacy.com/obituaries/cincinnati/obitua...

healing regards, Stephanie

I wish I had known Mary Schaaf! What a wonderful obituary. Thank you for sharing.

Brenda E

That is hilarious. What a character. His kids have a sense of humor.

His kids didn't like him very much, but recognized that he was a character who was well known in Victoria & lots of people would be interested. The obit was talked about in the opinions section of the paper & numerous online news sites.

I remember one of my old bosses wrote her own obit, it was terrible, talking about how wonderful she was & how much she loved her husband. It was a bunch of rubbish, she was a horrible person to work for. Once called all of us "snot nosed children" because we didn't dust the furniture showroom when the store housekeeper went on holidays for a week, we were all busy doing our own jobs! She hated her husband as well, said terrible things about him all the time. Funny things, obits. I'm not having one.

I saw a tombstone once that said "Those who know me, loved me well. Those who don't can go to hell." hehehehehehehe