A place to talk death and dying issues
Comments
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After watching the You Tube video of "What not to say to a cancer patient," I also watched some videos of courageous Christy O'Donnell, the Santa Clarita, CA resident who diligently fought to help pass AB128, California's Death with Dignity law. She had St IV lung cancer w/mets to the brain and bones. She passed earlier this year. Christy was a conservative Christian, too.
It's very comforting to know that I now have this option when things get really bad (and they will, as we all know). For so long we've treated our dogs, cats, and horses with more compassion and empathy while humans have had to suffer through protracted, agonizing, excruciating deaths because it was against the law to choose your own time of death. Hopefully more states will pass these types of bills. And ending your life legally is not as easy as you might think. You have to have 2 drs certify that you are terminal, have a psych evaluation, and wait 15 days after you make the first request.
If you don't want to take the end of life meds, then you DON'T have to, but don't preach to someone with a terminal illness about how they should or should not die.
I could say more, but chemo diarrhea has kicked in again
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Hi Lita,
Thank you for sharing your thoughts and experiences about what options you want at your end-of-life. I wonder how extended illness will change them by changing you.
Although I doubt I'd choose aid-in-dying for myself, it's an option I believe should be available to those facing devastating decline. The protections of the new California legislation make it inaccessible for all but the best resourced patients. Being well-informed and mentally healthy, having adequate financial and social support and having the drive to pursue it make it achievable for some, but not all.
What I really wish is that end-of-life care options expand for everyone. This includes adequate pain and symptom control, social support, relief of suffering and grief support for patients and their loved ones.
I don't want there to be only two choices - unrelieved suffering or possibly premature death. Most of us have faced crises that might cause us to "throw in the towel" sooner than necessary. The body-being wants to live and needs the proper support to survive and to thrive. We can do this for one another, not just turn our power over when facing death.
Disclaimer: I'm in a minority that believes that healing is always possible - whether or not we are medically cured. Below a video I often share here.
And here's a thought-provoking article about the hospice doctor Ira Byock who fought California's DWD legislation, but now accepts its existence. He is still pushing for better end-of-life care for the dying. I appreciate his nuance, rather than polarized arguments that both "sides" use.
http://www.jewishjournal.com/the_ticket/item/dr._i...
There's also a very long conversation with many perspectives about this at Smart Patients (free registration required):
https://www.smartpatients.com/conversations/14991-...
I'm open in the present moment to the mystery, Stephanie
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Interesting article at STAT this morning:
When doctors focus on survival, we can overlook what patients need to feel 'well'
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This is excerpted from an interview with the Jungian psychology James Hillman. In the first section, he focuses on modern, Western cultural attitudes toward dying and death, in the second section, on cancer. I highlighted the transition. Both explorations are fascinating. While you needn't buy the ideas he's selling, they are interesting to explore.
From an interview with James Hillman, a psychologist and cultural critic, on the current American cultural climate:
America and the Shift in Ages: An Interview with Jungian James Hillman
02/26/2011
James Hillman was an American psychologist. He studied at, and then guided studies for, the C.G. Jung Institute in Zurich.
Born: April 12, 1926, Atlantic City, NJ
Died: October 27, 2011, Thompson, CT
http://www.huffingtonpost.com/pythia-peay/america-and-the-shift-in-_b_822913.html
Pythia: You mean because these societies sense that an old way of life is dying?
Hillman: Exactly. Now there are plenty of intelligent people who are working on how to live in an economic no-growth society. And Obama has been very important in trying to bring new structural thought to these questions. But as long as the economists and the bankers rule, the old way will die very slowly.
Pythia: Still, the death of the old always implies that something new is coming.
Hillman (in an exasperated tone): This looking for the "new" is an American vice! We always want to see what's coming next — we're addicted to the future! Futurism is another American myth: whether Kennedy, Johnson, Reagan or Obama, American presidents all come into office with a new program, and the conviction that the country is going to be better than ever. But I think you have to hasten the decay. The classic view is always to look back, and to watch and help the dying.
Pythia: As I hear you speak I'm thinking of how my family and I helped my father die, which was a very profound experience. And I'm wondering what a similar experience might mean in a cultural sense.
Hillman: One would have to think about what needs to die in this culture; what attachments need to slip away, such as white supremacy, male supremacy, and the sense that we are the really "good people." America has a certain hubris about its virtue. Another thing would be our "unanalyzed" understanding of the word freedom. Probably one of the striking things in the dying of your father was his dependence on help, like nursing homes and nurses and crutches — yet out of his lack of freedom arose another kind of freedom.
Pythia: My father was particularly stubbornly American in that regard. He wouldn't even go into a hospital because then he wouldn't be "free" to smoke or drink. But you seem to be saying that as we lose one kind of freedom, there arises the possibility of another kind of freedom.
Hillman: I'm saying that we haven't thought about the idea of freedom enough. It needs to be internalized as an inner freedom from "demand" itself: the kind of freedom that comes when you're free from those compulsions to have and to own and to be someone. For example, think of the kind of freedom that (South African president) Nelson Mandela must have experienced when he was imprisoned. He completely lost his freedom in the outer world, yet he found freedom within. That's an example that broadens our current limited idea of freedom: that I can do any goddamn thing I want on my property; that I am my own boss and don't want government interference; that I don't want anybody telling me what I can and can't do; that we've had too much regulation, and so on. This is the freedom of a teenage boy.
Another strange aspect to this shift of ages is people's fear of getting cancer; it's absolutely endemic throughout the population. The health care bill stirred this up, and people began to wonder what would happen to them if they got cancer.
Pythia: Why do you take note of that?
Hillman: Because it's more than simply the fear of dying and the fear of disease: It's part of this period of things breaking down, and that it's only going to be a matter of time.
Pythia: It makes sense that people would have this fear, because you're describing this huge cultural moment in which not just one myth, but also three or four of our most fundamental myths, are all crumbling at once. And because most people don't have these changes put into a broader context, the way you're doing now, they're picking up the changes and feeling the anxiety —
Hillman: They are feeling it personally only.
Pythia: So people are feeling this shift, sensing that things aren't going to be the same anymore — and this fear is making this whole process worse?
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Longterm: You are an inspiration to us all. Even tho you're on hospice, you spend so much time sharing yourself and trying to encourage us.
How are you dealing w/the ascites? I have mets to the liver, kidneys, etc., and I'm trying not to think about that, but the time will come.
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Hi Lita,
Wow!
I so wish I had a crystal ball to forecast my future, but mine is on the fritz!
Couldn't even guess at your future and uncertain whether it's fruitful to try.
I think it's best to practice preventive measures to prevent unwanted symptoms and treatment effects; respond to problems as they arise by integrating a variety of conventional and holistic measures; provide a generally healthy and welcoming TLC for our body-beings and accept the things we cannot change.
Lita, a working crystal ball really couldn't tell you if you'll ever get ascites. Many with liver mets don't and even if those mets are fatal, ascites might not arise.
If you do want to read more minutia about the ascites experience, go to this bco topic peritoneal carcinomatosis Rosevalley and I get pretty graphic there.
bco member Diana50 had a lot of mets-related kidney trouble and accurately reported on her experiences in this forum. To see all her posts, go to the search option in the sidebar and type her name diana50 into <Search By Member Name> field. You can limit her posts to this forum by using the pulldown menu for <category/forum>. Be aware that she died last May, so don't expect immortality...yet, her quality and quantity of life were impressive!
Lita, am I even close to right? Are you trying to look into your future by looking into my past? Never a good idea as each must walk our own path!
btw, I compiled a document about how we die of cancer that I'm happy to share (very graphic!). Just PM me with your email address and I'll email it as an attachment.
Living with an unknowable future is one of the hardest parts of living with mets, as are our friends' deaths and dealing with unwanted, unpleasant symptoms and side effects.
The medical establishment focuses on the last of these, but to live well, I believe we must deal with all.
sending warmest healing wishes, Stephanie
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A poem that helps me re-enter the fierce fires of love and loss:
Self-Portrait by David Whyte
It doesn't interest me if there is one God
or many gods.
I want to know if you belong or feel
abandoned.
If you know despair or can see it in others.
I want to know
if you are prepared to live in the world
with its harsh need
to change you. If you can look back
with firm eyes
saying this is where I stand. I want to know
if you know
how to melt into that fierce heat of living
falling toward
the center of your longing. I want to know
if you are willing
to live, day by day, with the consequence of love
and the bitter
unwanted passion of your sure defeat.I have heard, in that fierce embrace, even
the gods speak of God.0 -
Thanks, Stephanie...One of the main things I was told when I was first Dx'd is that you MUST NOT compare yourself to anyone else w/BC. Your neighbor across the street could have the same type of cancer as you, but that doesn't mean you will both have the same outcome or react the same way to Tx in terms of SE's.
This woman (who BTW has lymphoma) also said be careful on the internet. Many cancer sites have not been updated and still say that people w/ST IV and extensive mets can only expect to live about 3 yrs max. That's no longer the case as many have survived way past 5 yrs. One can't look into a crystal ball or step into a magic time machine and project themselves into a future they may not have. Heck, I could just as easily keel over from a heart attack tomorrow because of the high cardio toxicity of capecitabine! But I'm not ruminating about that 24/7. I'm just trying to take it one day at a time, and in some instances one hour at a time.
That being said, I'm just trying to stay as informed as I can. Before my Dx, I never even heard of ascites. I had to look it up, being the naturally curious person that I am. Then I thought, "Oh, there's a possibility that this could happen to you later on down the road; and then again, maybe it won't." I certainly HOPE not. Shiz, I've got enough crap to deal with right now, given the back stuff, etc.
As you know, a lot of this is totally out of my hands. I did nothing to deserve this (as did everyone else on this board), and I can't tell the chemo how to fight this. Madame X is only going to work as long as she's going to work, then it will be on to something else.
All I can do is follow dr's orders, try to eat as cleanly and healthfully as I can, and try not to wallow in misery (and make everyone around me miserable) cuz that ain't gonna help. Being dejected isn't going to make my new husband, Mr. Cancer, take a hike. He's not going to divorce me anytime soon, despite my protests and my unwillingness to allow him to continue cohabiting w/me.
Have a great Labor Day.
Lita
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Sounds like a bad kid's joke:
What do you get when you cross a you-create-your-own-reality teacher with a terminal case of cancer?
John Waddell, SARK's beloved partner in love and authorship of Succulent Wild Love
xxx
He died just six months ago and I found this stunning reflection by their close friend Amy Ahlers
The Wake-Up Call Show: In Loving Memory Of the Exquisite John Waddell
This won't be everyone's cuppa, but I'm fascinated by those who walk their talk all the way to and through death.
SARK says their connections continue:
https://www.facebook.com/PlanetSARK/posts/10154030...:0
https://www.facebook.com/PlanetSARK/posts/10154434...:0
It may be hard to believe, but I have to believe SARK - even if hers is an unusual take on grief + gladness!
Her book, Glad No Matter What: Transforming Loss and Change Into Gift and Opportunity, explored her relationships with her mother and grief. Very beautiful!
I trust her exploration of her own reality, even if it overlaps only a bit with mine.
loving kindness for all, Stephanie
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Thanks for the links, Longterm...very inspirational.
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For those of you who might be interested:
Living With Joy, Dying in Peace
Free Six-Month Course
September 10, 2016 – March 15, 2017The more attached we are to our loved ones, our possessions, and our sense of identity, the more we suffer. Realizing this truth frees us to find joy in each simple moment of life, and peace at the moment of death. According to the Tibetan spiritual traditions, living and dying are part of a sacred continuum. Death need not be considered a failure, negative, or even a loss; rather, it is a transition toward a new beginning. In this six-month series of teachings and guided meditations, Geshe Tenzin Wangyal Rinpoche will help you to:
- Let go of your false identity and discover who you truly are.
- Free yourself from fears and attachments.
- Find more hope and joy in life.
- Understand the dying process as a pathway to wisdom and rebirth.
- Recognize the parallels between dying and falling asleep.
- Find peace with your own death.
- Help others through sickness and death.
This online course is open to everyone, from the young and healthy to those who are facing death, as well as their caregivers. It is based on a series of monthly free live webcasts offered by Tenzin Wangyal Rinpoche through Ligmincha International. Here, you will find all the recordings and other related support materials from the webcast series as they are produced, as well as a discussion forum for mutual support in your practice. Forum moderators will ensure that discussions are appropriate and supportive.
FIRST FREE WEBCAST IN THE SERIES
Saturday, September 10, 2016, 3–4:10 p.m. Eastern Time U.S. (New York time)
Releasing Attachments, Finding Freedom and JoyGrasping at something you are sure to lose can only lead to pain and suffering. Through this teaching and guided meditation with Tenzin Wangyal Rinpoche, discover the way to a more joyful and vibrant life by:
- Realizing the truth of who you really are—and who you are not
- Understanding that nothing in this life lasts forever
- Letting go of strong attachments to possessions and loved ones
- Relating to each moment with more openness, playfulness, and depth of connection
Six-Month Webcast Schedule. Each free live webcast is scheduled for the second Saturday of each month and will take place from 3-4:10 p.m. Eastern Time U.S. (New York time). Within a few days after each live webcast, the video and downloadable audio recordings will be added to the course site so that they may be reviewed at any time.
- September 10, 2016—Part 1: Releasing Attachments, Finding Freedom and Joy
- October 8, 2016—Part 2: Transcending Fear, Finding Hope
- November 12, 2016—Part 3: Asleep but Not Unconscious: Discovering Awareness in the Sleep State
- December 10, 2016—Part 4: Sleep and Death as Doorways to Wisdom
- January 14, 2017—Part 5: Finding Peace With Death
- February 11, 2017—Part 6: Helping Loved Ones Through Sickness and Death
For more information: http://www.ligminchalearning.com/living-with-joy-dying-in-peace
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An interesting, thoughtfully written, and thought-provoking article in The Atlantic, "What It Feels Like to Die":
http://www.theatlantic.com/health/archive/2016/09/what-it-feels-like-to-die/499319/
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Hi Brenda,
So wonderful to hear from you. I think of you often and with great fondness, like I do everyone here. So many I wonder about, but don't want to pry - trust your sense of timing to reconnect.
Often sign my posts with a hug and realized again the great advantages of having a body to speak and type...but a virtual hug just isn't the same as an in-person hug.
My longtime, local friend Karen was recently diagnosed with MBC many years after primary BC. We'd been communicating through email and friends, but hadn't seen one another since her diagnosis.
Last week Karen and her wife Sue came to visit my landladies and stopped by my cottage with apple pie slice and hugs.
Karen and I completely teared up and were shaken by the strength of our hug - this after 20+ years of friendship and many shared adventures.
Something about standing in a warm, physical embrace with another MBC friend is just amazing.
I wish I could take my bco friends in my actual arms, as well as my virtual hands to let you know how much you've come to mean to me.
Well, wishes are unicorns riding the rainbow path, disappearing into the mist.
I'll send a wish of loving kindness for all of us to all of us!
Love and gratitude (or groovin' attitude), Stephanie
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Hi Brenda,
Read the Atlantic article and appreciate its approach, even if mine differs slightly - what with being the dying person and all. All as in knowing I'm far more than a physical-psychological-social being. All as being along for the adventure/ride, even as I'm sleeping 15-17 hours a day.
I've got a stack of the little blue hospice books here, Barbara Karne's Gone From My Sight. It has many of the same observations as the Atlantic article - all laid out in a time frame. My carers get to take them home to read. Karne's blog, linked above, contains many more interesting approaches to dying and death.
A book that takes it from a totally different angle is Graceful Exits: How Great Beings Die by Sushila Blackman
Death is a subject obscured by fear and denial. When we do think of dying, we are more often concerned with how to avoid the pain and suffering that may accompany our death than we are with really confronting the meaning of death and how to approach it. Sushila Blackman places death—and life—in a truer perspective, by telling us of others who have left this world with dignity.
Graceful Exits offers valuable guidance in the form of 108 stories recounting the ways in which Hindu, Tibetan Buddhist, and Zen masters, both ancient and modern, have confronted their own deaths. By directly presenting the grace, clarity, and even humor with which great spiritual teachers have met the end of their days, Blackman provides inspiration and nourishment to anyone truly concerned with the fundamental issues of life and death.
It's a fairly subjective book and I'm sure some of the stories are distorted by time and the followers of these masters. Still, it's uplifting to consider different possibilities for dying over human history, different cultures and belief systems and other orientations to life & death.
I often wonder whether our longer life spans and locking the disabled, diseased and dying away from sight has really benefited us in the long run. That death is considered an affront, not everyone's destiny, seems to me a modern, privleged affliction.
It's interesting that Blackman died shortly after finishing the book - have no idea whether she saw it in print and held it in her hands.
Wishing you well, my friends, Stephanie
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More than 151,000 people die each day worldwide. More than 1400 women die of breast cancer each day worldwide.
Just as there is no quintessential dying person, there is no quintessential life and death story, no quintessential perspective on the dying process.
How heartening that we live in a world that increasingly supports tolerance and respect for our differences while also honoring the common threads that tie us together!
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Recent news release from ASCO (American Society of Clinical Oncology, Inc.)
Early Palliative Care Improves Coping, Quality of Life for Patients With Incurable Cancers
September 6, 2016
"Findings such as these continue to expand and build on the benefits of integrating palliative care into the cancer care continuum," said ASCO Expert Andrew S. Epstein, MD. "A diagnosis of cancer is never easy for patients, so it is promising that we now have a strategy of early palliative care that can help patients cope while improving their quality of life."
ALEXANDRIA, Va. – A randomized clinical trial found that introducing palliative care shortly after a diagnosis of certain metastatic cancers greatly increases a patient's coping abilities, as well as overall quality of life. Researchers also found that early integration of palliative care results in an increase in discussions about patient end-of-life care preferences.
The findings are part of a growing body of evidence demonstrating the benefits of palliative care on patient quality of life. This study will be presented at the upcoming 2016 Palliative Care in Oncology Symposium in San Francisco.
To explore the effects of early palliative care, researchers randomly assigned 350 patients, who had been recently diagnosed with incurable lung or non-colorectal gastrointestinal cancer, to receive early palliative care integrated with oncology care or oncology care alone.
"Our research looked at a new measure of a patient's ability to cope effectively with their diagnosis. What we found was the patients who received early palliative care were more likely to use adaptive coping strategies – meaning they were more likely to take some action to make their lives better as well as to accept their diagnosis," said lead author Joseph Andrew Greer, PhD, Clinical Director of Psychology and Research Scientist at the Center for Psychiatric Oncology & Behavioral Sciences at Massachusetts General Hospital. "Palliative care is a key ingredient to improving a quality of life, which is important to both patients and their families."
To determine patient coping abilities, researchers used the Brief COPE assessment – a measurement tool examining how people respond to stress. It examines patient-reported measures such as acceptance of diagnosis, positive reframing, use of emotional support, and acceptance. Patients were evaluated at the 12- and 24-week mark. At 24 weeks, patients receiving palliative care were significantly more likely to report using active and engaged coping styles compared to the usual care group.
Researchers used the Functional Assessment of Cancer Therapy-General (FACT-G) to assess quality of life and the Patient Health Questionniare-9 (PHQ-9) for mood at baseline. Patients who received early palliative care reported significantly higher quality of life and lower levels of depression at the 24-week mark, but not at 12 weeks.
In addition, 30% of patients who received the palliative care intervention reported discussing end-of-life care preferences, as opposed to 14% of patients receiving standard care alone.
The authors note that the integrated care model of early palliative care has potential to be expanded to other advanced stage cancers. The American Society of Clinical Oncology (ASCO) recommends concurrent use of palliative care with cancer care early in the course of illness for any patient with metastatic cancer and/or high symptom burden.
This study received funding from the National Institutes of Health (NIH).
View thefull abstract link at https://www.asco.org/about-asco/press-center/news-...
About ASCO:
Founded in 1964, the American Society of Clinical Oncology, Inc. (ASCO®) is committed to making a world of difference in cancer care. As the world's leading organization of its kind, ASCO represents more than 40,000 oncology professionals who care for people living with cancer. Through research, education, and promotion of the highest-quality patient care, ASCO works to conquer cancer and create a world where cancer is prevented or cured, and every survivor is healthy. ASCO is supported by its affiliate organization, the Conquer Cancer Foundation. Learn more at www.ASCO.org, explore patient education resources at www.Cancer.Net, and follow us on Facebook, Twitter, LinkedIn, and YouTube.
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Remember, there's a difference between what palliative care is in the USA and what it is in the UK, Canada and Australia. The very short version is USA palliative care is a both-and approach that allows patients to continue with treatment. In the other countries, palliative care is synonymous with hospice care, an either-or approach - continue active treatment or stop to improve quality of life at the end-of-life.
Hope this clarifies rather than confuses.
Healing regards, Stephanie
THE article that set the course for palliative approach to cancer care for those with advanced cancer:
Early palliative care for patients with metastatic non-small-cell lung cancer.
Temel JS(1), Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ.
N Engl J Med. 2010 Aug 19;363(8):733-42. doi: 10.1056/NEJMoa1000678.
Free full text article at:
http://www.nejm.org/doi/full/10.1056/NEJMoa1000678
Abstract:
BACKGROUND: Patients with metastatic non-small-cell lung cancer have a substantial symptom burden and may receive aggressive care at the end of life. We examined the effect of introducing palliative care early after diagnosis on patient-reported outcomes and end-of-life care among ambulatory patients with newly diagnosed disease.
METHODS: We randomly assigned patients with newly diagnosed metastatic non-small-cell lung cancer to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone. Quality of life and mood were assessed at baseline and at 12 weeks with the use of the Functional Assessment of Cancer Therapy-Lung (FACT-L) scale and the Hospital Anxiety and Depression Scale, respectively. The primary outcome was the change in the quality of life at 12 weeks. Data on end-of-life care were collected from electronic medical records.
RESULTS: Of the 151 patients who underwent randomization, 27 died by 12 weeks and 107 (86% of the remaining patients) completed assessments. Patients assigned to early palliative care had a better quality of life than did patients assigned to standard care (mean score on the FACT-L scale [in which scores range from 0 to 136, with higher scores indicating better quality of life], 98.0 vs. 91.5; P=0.03). In addition, fewer patients in the palliative care group than in the standard care group had depressive symptoms (16% vs. 38%, P=0.01). Despite the fact that fewer patients in the early palliative care group than in the standard care group received aggressive end-of-life care (33% vs. 54%, P=0.05), median survival was longer among patients receiving early palliative care (11.6 months vs. 8.9 months, P=0.02). (emphasis added by me, Stephanie)
CONCLUSIONS: Among patients with metastatic non-small-cell lung cancer, early palliative care led to significant improvements in both quality of life and mood.
As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival.
(Funded by an American Society of Clinical Oncology Career Development Award and philanthropic gifts; ClinicalTrials.gov number, NCT01038271.)
DOI: 10.1056/NEJMoa1000678
PMID: 20818875 [PubMed - indexed for MEDLINE]
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Stephanie, thank you for the information on palliative care for metastatic non-small-cell lung cancer.
I'll be forwarding it (later) to a friend whose husband has Stage IV non-small-cell lung cancer. His symptoms right now are mostly coughing and SOB. He is in active treatment, in fact, a drug trial.
But later, when they are looking for alternatives, I'll send it.
Thank you,
Madelyn
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Good morning, dear Madelyn!
Sorry if that abstract was unclear!
The survival benefits for palliative care in the study I cited indicated this approached worked in patients when begun at the time of diagnosis of terminal (aka Stage IV) lung cancer, not added or substituted in later, like a new chemo, targeted therapy or treatment approach. (Please see New York Times article below).
Please learn more and talk to your friends and also anyone you know with complex, chronic and life-threatening illness.
And I hope that all cancer patients and our loved ones are aware of the short and long term benefits of palliative care.
I received palliative care for 4 1/2 years before I started hospice care last November. Because of palliative care, I had two life-saving and life-prolonging medical procedures I might have missed, if I'd relied only on oncology's approach to treating disease, not the whole person's symptoms and treatment side effects. In early 2012, I had my lung linings sealed in a VATS pleuradesis procedure that stopped fluid build-up there. Last summer, I had a drain tube implanted in my belly that allows me to draw off a liter of bloody, cancerous fluid each day.
Also, I had the tremendous support of my palliative peeps to thrive more than just survive with very advanced breast cancer.
I truly can't say enough good things about palliative care for everyone with serious illness.
Find out more at Get Palliative Care Now.
"Palliative care teams specialize in treating people suffering from the symptoms and stress of serious illnesses such as cancer, congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), kidney disease, Alzheimer's, Parkinson's, Amyotrophic Lateral Sclerosis (ALS) and many more. Symptoms may include depression, pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and much more.
"But the team will also spend time communicating deeply with you. They will give you control over your care by truly exploring your goals and helping you to understand your treatment options. They will help you gain the strength to carry on with daily life and improve your quality of life.
Sending good wishes for Madelyn and all our silently listening readers.
Many healing blessings today and everyday, Stephanie
xxx
Here's from the New York Times:
Palliative Care Extends Life, Study Finds
By DONALD G. McNEIL Jr.
AUG. 18, 2010
In a study that sheds new light on the effects of end-of-life care, doctors have found that patients with terminal lung cancer who began receiving palliative care immediately upon diagnosis not only were happier, more mobile and in less pain as the end neared — but they also lived nearly three months longer.
The findings, published online Wednesday by The New England Journal of Medicine, confirmed what palliative care specialists had long suspected. The study also, experts said, cast doubt on the decision to strike end-of-life provisions from the health care overhaul passed last year.
"It shows that palliative care is the opposite of all that rhetoric about 'death panels,' " said Dr. Diane E. Meier, director of the Center to Advance Palliative Care at Mount Sinai School of Medicine and co-author of an editorial in the journal accompanying the study. "It's not about killing Granny; it's about keeping Granny alive as long as possible — with the best quality of life."
In the three-year study, 151 patients with fast-growing lung cancer at Massachusetts General, one of the nation's top hospitals, were randomly assigned to get either oncology treatment alone or oncology treatment with palliative care — pain relief and other measures intended to improve a patient's quality of life. They were followed until the end of 2009, by which time about 70 percent were dead.
Those getting palliative care from the start, the authors said, reported less depression and happier lives as measured on scales for pain, nausea, mobility, worry and other problems. Moreover, even though substantially fewer of them opted for aggressive chemotherapy as their illnesses worsened and many more left orders that they not be resuscitated in a crisis, they typically lived almost three months longer than the group getting standard care, who lived a median of nine months.
Doctors and patients "traditionally see palliative care as something extended to a hospitalized patient in the last week of life," said Dr. Jennifer S. Temel, an oncologist and author of the paper. "We thought it made sense to start them at the time of diagnosis. And we were thrilled to see such a huge impact. It shows that palliative care and cancer care aren't mutually exclusive."
Dr. Atul Gawande, a Harvard Medical School surgeon and writer who just published a long article in The New Yorker about hospitalized patients' suffering before death, called the study "amazing."
"The field was crying out for a randomized trial," he added.
Although the study could not determine why the patients lived longer, the authors and other experts had several theories: depression is known to shorten life, and patients whose pain is treated often sleep better, eat better and talk more with relatives. Also, hospitals are dangerous places for very sick people; they may get fatal blood infections, pneumonia or bedsores, or simply be overwhelmed by the powerful drugs and radiation attacking their cancer.
Continued at:
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Doctors here in Canada will treat with pain meds, we don't have to go to palliative for that.
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Hi Barbe,
I apologize for any confusion my supportive comments about palliative care may have caused!!!
Yes, my oncologist treats with pain meds and I think all oncologists in California and the USA do too.
What palliative care offers is a different orientation by focusing on the patient's and their carers' best possible quality of life and all it takes to achieve that - everything from social and psychological support to different and diverse approaches to various symptoms and side effects.
My oncologist of 24 years and I make an extraordinary team, but he continues to focus on treating cancer, conversation and loving me, without recognizing other ways my quality of life can be improved.
By pursing my palliative care team's medical recommendations for both the VATS pleuradesis sealing of my lung linings and the indwelling belly drain for ascites, my life has substantially improved and, everyone now believes, been extended
Palliative care has been an unexpected life changer for me since I enrolled 5 1/2 years ago.
I hope others with serious illness, disease symptoms and troubling treatment effects will pursue palliative care for themselves and their loved ones.
May all suffering be eased, may we live in ever more peace and harmony, may we find our best healing allies along this oft-unwanted cancer journey.
much loving kindness for all this morning, Stephanie
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Good evening, dear Stephanie,
I see I missed your earlier points.
I will send lots of info on palliative care to my friend a little later this week.
I have an audition Tuesday/tomorrow evening for the New Jersey Chamber Singers (info on Patty's thread).
Love,
Madelyn
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Longterm no need to apologize. It just made me wonder if you can't get narcotics from your pcp or onc. I get all the way through morphine to Fentanyl from my regular doctor.
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I heard a character on the TV show "Fear the Walking Dead" make this comment last night:
"You'll never be the same. Then one morning you'll start thinking like someone new. Someone you don't know yet...the person who comes after."
This was said by the character named Strand, episode entitled, "Pablo and Jessica." I played that segment back a couple of times so I could write it verbatim. It just made me cry.
Thinking about this in terms of cancer, I'm not the same Lita anymore, and I never will be. Having been dx'd with Stage IV cancer 5 mos. ago, I'm a shadow of what I once was (my face is drawn and I've lost over 30 pounds). I'm trying to figure out who I am now, and navigate thru this nightmare. I haven't started thinking like someone new yet. I don't know how much more time God will grant me w/my family and friends down here on Earth, so, in a sense, I am already a dead woman walking, one of "The Walking Dead."
I try to stay positive and keep praying and staying grounded in the Word, but it's really hard.
Lita
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http://www.theatlantic.com/health/archive/2016/09/what-it-feels-like-to-die/499319/ Made the Atlantic article clickable for those of you who want to read easily. I really liked this piece as I navigate this world with a dear friend of mine who is in the final stages of dying. I spend as much time with her as she wants me to and although she is in and out, she is still "there." She is in good spirits as she feels she lived her life on her own terms and if you knew her, you would agree! May all of you have a gentle and kind transition!
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Lita, oh yes, even a diagnosis of breast cancer (early or late stage) completely reshapes our self-identities.
And I notice as my body continues to break down, that my body itself is being reshaped - not just the bilateral mastectomies 25 years ago that I never had reconstructed or wore prostheses.
I too have dropped many pounds from 122 to 97 and much of that is fluid and liver swelling my tummy.
We are asked to do so much with the diagnosis and even more with the bodily changes we undergo.
When it seems that most roads still lead to death, our minds really can't juggle the "I am mortal? Now, sooner than later."
Self-kindness and forgiveness allow us to continue life even in the presence of disease, treatments, dying, death and life's greater mysteries.
Here's a song I shared in another post. Its message helps me when I get too speedy and move along to possible outcomes in my mind's eye.
What is happening is always more interesting than what I imagine I'd prefer to have happen.
loving kindness for all, Stephanie
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April485 - the piece was comforting.
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Interesting news from the UK
DOCTORS 'ROUTINELY WRONG' WITH PREDICTIONS FOR WHEN TERMINALLY ILL WILL DIE
September 15, 2016
Doctors often get it wrong when predicting how long terminally ill people have left to live, new research suggests.
A review of more than 4,600 medical notes where doctors predicted survival showed a wide variation in errors, ranging from an underestimate of 86 days to an overestimate of 93 days.
And it does not appear that more experienced or older doctors are any better at predicting when somebody will die than their younger counterparts.
Doctors' estimates of when terminally ill patients would die were sometimes out by up to three months, researchers found
Doctors' estimates of when terminally ill patients would die were sometimes out by up to three months, researchers found
he review of existing research on the subject was carried out by a team at the Marie Curie Palliative Care Research Department at University College London (UCL).
Further work is now being carried out to see if it may be possible to train doctors to make better predictions.
Paddy Stone, professor of palliative and end-of-life care at the research department, said: "Delivering the most appropriate care and treatments for those with terminal illnesses is often dependent on doctors making an accurate prognosis.
"Knowing how much time is left can also better equip patients and their carers to make more informed choices about their care. This research suggests that there is no simple way to identify which doctors are better at predicting survival.
Continued at:
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My BIL is a doctor and the director of the ER. He said the oncologists he knows, realizing it's a no-win situation, regularly under-estimate the time left. When patients live longer than the estimated time left, patients and families are grateful for the "extra" time and are happy that the treatments worked. When patients die sooner than the estimated time left, the patients may not have finished getting their affairs in order or doing their bucket lists and family members feel cheated.
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New short documentary I'd like to see, but I don't do netflix and being on hospice, I won't do the ICU unto death either:
And this is a bit crude, but oh so true. I hope it prompts the younger generation to open to "the conversation" about end-of-life decisions for themselves and their loved ones:
I'm so grateful to have this small community to explore these topics together. They are so painful and confronting!
If you watch Extremis, I'd love to read your film review!!!
easing suffering, Stephanie
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