Facing Death: Choosing Quality of Life Over Aggressive Treatment
http://thedianerehmshow.org/shows/2012-04-16/facing-death-choosing-quality-life-over-aggressive-treatment
Amy Berman
Courtesy Amy Berman
Amy Berman found out 18 months ago that she had stage IV inflammatory breast cancer and it had spread to her spine. She was 51 years old. A visit to an oncologist confirmed what she already knew: there was no cure. She then saw a specialist. He advised intensive chemotherapy, radiation, a mastectomy and then more chemotherapy. Amy Berman has had a long career in health care. She knew that many patients spend their final months suffering from the effects of aggressive medical treatment. She also knew she had another option - palliative care. Diane will talk with Berman and a palliative care expert about quality-of-life choices for people with terminal illnesses.
Guests
Amy Berman
senior program officer, The John A. Hartford Foundation; she was diagnosed with incurable cancer in November 2010.
Dr. Diane Meier
director, Center to Advance Palliative Care at The Mount Sinai School of Medicine in New York City.
Program Highlights
Many patients diagnosed with terminal cancer follow a familiar path of surgery, radiation, and chemotherapy. Others pursue alternative remedies outside mainstream medicine. Amy Berman chose neither. She opted for minimal treatment for her incurable cancer, and she looked to the growing field of palliative care to ensure her remaining time on earth would be the best possible.
Diagnosis And Treatment Options
Berman received the diagnosis of inflammatory breast cancer, a very aggressive type of cancer that often spreads rapidly throughout the body. Following her initial diagnosis, her doctors determined that the cancer had also spread to her lower spine and had advanced to a stage IV illness. Once she absorbed the initial shock of her diagnosis, Berman decided that she there was no current cure available, she would "fight for feeling well" for as long as possible. She wanted to be able to continue to work, and to enjoy as normal a life as possible, for as long as she could.
Palliative Care
Berman said that for some patients, if they can attend to pain and function, and to palliative care, they can actually live longer than some of those who choose aggressive treatment. Diane Meier said she looks at Berman as an example of a sort of new generation of cancer patients. "That is, Amy is pursing both treatment for her cancer, not very toxic treatment, but treatment nonetheless, at the same time as she is receiving palliative care focused specifically on making sure she feels well, that any symptoms she might have are well controlled, that there are no issues with depression or anxiety, that she can live fully in the time that she has remaining, and modern cancer centers are now integrating palliative care and delivering it at the very same time as cancer treatment," Meier said.
Not Much Data To Draw On
Meier also noted that although Berman is doing very well, doctors have some difficulty in predicting outcomes for patients who chose palliative care over more traditional treatment options for cancer. "One of the problems is that we actually don't have much data on what happens to people like Amy who don't do business as usual, don't accept very toxic and aggressive treatments because almost all patients do because that's what's recommended to them," Meier said. Too often, patients make decisions based on fear after receiving a cancer diagnosis. Berman said initially she was very afraid, too, but that she decided fairly quickly that she didn't want to waste the limited time she had left "going through mourning."
You can read the full transcript here.
Comments
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Last year, my 86 year old father was diagnosed with stage IV colon cancer. As a physician himself, he knew that even with treatment, the success rate was very low and the longest he might live was 11 months, all while suffering the effects of additional surgery and chemotherapy. So he quietly and bravely decided to refuse all interventions. Though it was not easy, he died with dignity.
His oncologist was totally focused on fighting the illness. I think she and his primary physician viewed it as a failure that he died, even at 86 years old. Initially his obituary claimed he "lost a battle with cancer," but we asked the newspapers to remove that before publication. He didn't fight or lose; he simply died with courage and equanimity.
I wish there were more opportunities for discussion about end of life decision-making long before those decisions must be made. Of course, medical intervention sometimes makes sense. But, preparing for and accepting the inevitability of death should be a normal part of life- and medical practice. It might alleviate fear, reduce stress later on at an already difficult time, and help us focus on living while we are well.
best,
Pat
For those fortunate enough to face end of life while at home and have the true benefits of Palliative care, nursing home residents receive Hospice Care. The doctor at the facility must signoff on an order to stating that the resident probably will not survive for 6 mons. My 87 y.o. mother suffers with Parkinson's Disease, resides in a nursing home here in Connecticut, does not qualify to receive "Palliative" care (because one must live in your own home) and her hospice assessment ruled that she does not qualify to receive any Hospice type of Palliative care. She cannot reposition herself in her wheelchair, feed herself, losing most of her communication skills, has anxiety and pain. Your guest is doing the right thing and I am wondering if she has heard of or is a member of the Right to Die Society? And would she consider her option to end her life if in the end her life becomes unbearable?
Gail in Connecticut
This is an incredibly timely topic for today, which is National Healthcare Decisions Day. Free information, forms, resources, and a great short video regarding advance care planning are available at www.nhdd.org
Nathan Kottkamp
Founder and Chair
National Healthcare Decisions Day
There seem to be levels of treatment that are similar to or indistinguishable from palliative care.
Diane Meier is one of my heroes. She is the reason that both my husband and myself are hospice volunteers. We saw her on the series that Bill Moyers did and after that felt moved to become volunteers. Her explanation of the difference between hospice and palliative care is very helpful. How can the discussion of palliative care and/or hospice become normalized, i.e. how can we discuss this kind of care without people shrinking away in fear? Especially I think it is important to consider what palliative care and hospice represent BEFORE a person becomes ill. Just as we are encouraged to have a will and to fill out the Five Wishes - which I cannot even get my own brother to consider - people shy away from considering these things. I would like to see these subjects talked about so that they are no longer taboo.
20 years ago my mother had almost the exact same diagnosis and made the same chice. As she said to me - "I've been through chemo and that isn't living." She only survived about 9 months, she was 51 when she died.
Fast forward almost 18 years later and my dad was diagnosed with pancreatic cancer. There was a slim chance that chemo, which was the only treatment at the stage he was at, would give him a few more months. As he said what good would a life of sickness caused by the chemo be for an extra few months. He had fought cancer when he was in his 30s and had been through radiation treatment and survivied another 34 years so it wasn't as if he was against treatment but he knew there wasn't (isn't) a cure for pancreatic cancer. He spend the last few months of his life taking care of his affairs, spending time with his siblings, children, grand children, and great grand children. He made the right choice as had my mother.
I hope I have the wisdom and courage that they both exhibited when my time comes.
I would like to add that mental well being and peace of mind in and of itself promotes the bodys own healing system. I am an organic farmer and work with a doctor who uses non intrusive means of treating cancer through a radical implementation of healthy eating and adding certain high mineral contents. The body is an amazing machine that responds tremendously to proper nutrition and the wonderful attitude demonstrated by Amy,,,YOU GO GIRL!
I am curious about whether your guest has had a past out of body experience or near death experience. I had one and am comfortable with the idea of death; however, my mother at 94 years old has not and is terrified of death. She will not talk about it or allow anyone to mention it in her presence.
Amy is a wonderful example of enjoying life to the end. I have perfect health and do not know that I could be the splendid model of honoring life and the quality of life that Amy examplifies.
Please do not use my name if you read this because of my mother's privacy.
Palliative care is wonderful. It is not new. I am a physician. I graduated form Medical school in 1983. I was thoroughly trained in palliative care, because at that time there was so littel we could really do. Since then there have been tremendous advances in Oncology, and we have fallen in love with the technology. We have also swung so much furhter to fee for service medicine, which of course favors expensive chemotherapy and radiation. I am so thrilled to see the pendulum swinging back. Perhaps we will find balance at last.
I would like to add that mental well being and peace of mind in and of itself promotes the bodys own healing system. I am an organic farmer and work with a doctor who uses non intrusive means of treating cancer through a radical implementation of healthy eating and adding certain high mineral contents. The body is an amazing machine that responds tremendously to proper nutrition and the wonderful attitude demonstrated by Amy,,,YOU GO GIRL!
Hi Diane,
This site may be helpful to your guest and callers in considering alternatives to traditional US medical treatments.
http://www.healingcancernaturally.com/vitamin-c-cancer-treatment.html
Great Show as always !
John
I wanted to share an article that came out on Washington Post this past month on how those in the medical profession tend to choose against aggressive treatment, knowing full well what their options are and what the outcome would me.
My father, who is a medical doctor himself, also chose not to receive treatment and have been living with stage 4 malign melanoma for the last 8 years, exceeding all expectations only due to positive attitude, choosing to live whatever is left off his life feeling good and and slipping away in peace at home when time comes, sorrounded by friends and family rather than on a hospital bed drained and exhausted from rounds of chemo and radio therapy.
http://online.wsj.com/article/SB1000142405297020391830457724332124283396...
I am a 70 year old male just diagnosed with prostate cancer--Gleason 8 --- 11 positive cores. Non-curative at this point according to Cle Clinic. Looking at surgery or radiation / hormone. Side affects are causing me to consider minimal treatment --basically no treatment. Scans negative for progression to bone. Side affects ugly for a no-cure situation--if I can get 5 to 7 quality years--I'd go for no invasive treatment in a heartbeat !! Thanks for another great show !!!
My husband died two years ago after a 2 1/2 year battle with Rectal Cancer. His Oncologist focused solely on "curing" my husband, and the Cancer Treatment Center did not offere palliative care. I felt that my husband's pain and suffering could have been diminished with palliative care being involved. There were many circumstances in my husband's treatment in which there was very little communication between the Oncologist and Primary Care Provider. Further, as his wife and person who accompanied him to all of his treatment and most of his appointments, I was not included in the treatment team nor was I given information that I requested frequently. After much thought, I wrote a letter to the Oncologist and the Cancer Treatment Center asking them to add palliative care to their services and giving them detailed reasons why it is an absolute necessity. Not only did my husband's oncologist respond to me but the quality care director did as well. The treatment center will be adding this service to their spectrum of care. It seems that my letter came on the heals of a study on palliative care, and many treatment centers are now adding this option to their services. Thank you for talking about this very necessary service - sometimes it's not about a cure but about compassionate care that addresses what the patient needs and wants.
In 2004 my best friend found out that her breast cancer, which had been addressed 5 years earlier, had metastasized into her bones. Her oncologist prescribed a very aggressive plan to extend her life. My friend had three children and locked on to her doctors plan. What she did not 'hear' was that there was only a 5% chance that she could extend her life. What followed for the next 7 months were miserable. Her remaining life was anything but life. She was not able to participate in many ways with her childrens' lives. I am still angry. "What got lost was treating the whole patient.", as Dr. Meyer appropriately said.
There are many of us, who has developed intolerance for environmental chemicals and suffer chronic illness just based on that. For us, the possibility to opt for highly toxic treatment regimen is practically non existent, if cancer would also become an issue. The medical establishment highly focused only to offer just that and patients concerns can practically become dismissed in order to search for the cure. Patients can even be discouraged from seeking adjuvant therapies, administered for diminishing toxic effects, suggesting that vitamins, supplements might interfere the success of the treatment, that devised to be toxic. Again, I am unsure that there is even side by side comparison to understand better, if it's the case.
In the light of this, is extremely difficult to make the right decision for a patient to make the correct decision about their own care, especially if there are additional concerns, having already special needs. I find, that the cancer specialist may not want to hear some of those concerns, since the most accepted path is to go through some form of aggressive treatment routine. It is suggested to be a mistake not to if the patient wants to preserve life.
In the most critical time, I don't feel that the patients have the facts about their options to achieve the best outcome, nor the support necessary to make the most meaningful decision for themselves.
If a parent chose the same course of care for their minor child as Amy has chosen, would the courts and child services accuse them of not getting the most aggressive treatment for their child? Some parents have risked loss of custody over medical decisions
I so agree with you, and I think that much of people's discomfort comes from their fear of death. In fact, our society as a whole has a tremendous fear of death. Once we have either accepted that we, too, one day shall die, or we have been through the death and dying of a loved one (my husband), some of us become more comfortable with the subject of death. We become aware of how very valuable palliative care and hospice services are to those who are presented with end of life issues. It takes education, and that is a slow process. Thank you to folks like Diane Rehm who bring this to the forefront and discuss it.
@istarguven
Well the medical establishment would never make as much money if most patients chose as your father did...although I imagine most insurance companies would hope more patients chose as your father did for less/no treatment.
I'm glad to hear a story of someone holding up against the medical industrial complex and making good decisions. I only had an infection on my ankle and got railroaded into a dangerous bone scan which will take time off of my life due to needless radiation exposure. Watch out for yourselves, please.
The decision-making process is often weighted against fully rational choices. I was already debilitated and had long-term depression before my Stage IV colon cancer diagnosis, and recall feeling rather passive during the process of urgent tumor surgery then agreeing to chemotherapy. My treatment has had mixed results, but the recent regimen seems to be working. I am disturbed in that many unhealthful habits remain as this has become routine, such as depression and negative/stagnant thinking. On the other hand, the emphasis on "fighting" the cancer and engaging in spiritual journeys, etc. places a value on a certain personality type and type of experience at the expense of the more "ordinary". I do wish that palliative care were more integrated into oncology care beyond the superficials like Reiki and yoga.
It is so sad to see some many people suffering and dying from cancer while this is totally unnessesary. If you are reading this comment and have cancer or know someone who has cancer I recommend you read the book "OUTSMART YOUR CANCER" by Tanya Harter Pierce, ISBN 978-0-9728867-8-9.
People with cancer on the show today please read this book cover to cover and act upon your newly aquired knowldge to save your own life.
There are opposing forces going on in the area of cancer treatment and misinformed cancer patients are the victims.
Diane, please mention this book on the show if you can. I hope I was able to help cancer patients by posting this message.
A good follow on show would be to address legalizing death with dignity (also known as assisted suicide).
I am an emergency physician interested in integrating palliative care in emergency medicine. There is an excellent book for all cancer patients called: Anticancer: A New Way of Life by Dr. David Servan-Schreiber. It details excellent ways to eat, what products to avoid, activities to pursue, etc. VERY uplifting and extremely helpful for anyone who finds they are faced with cancer. R.A. Manfredi, MD, FACEP
One of the benefits of choosing not to go with the aggressive chemo & radiation poison therapies is that it leaves you free to see what alternative therapies can offer your body. There are herbal therapies for helping a body to heal from cancer, I have seen one that originated with the Ojibwe people in my part of the country that has helped several people I know heal from their cancers and survive for many years beyond their doctors expectations while experiencing returned health instead of decline. These herbal therapies have more of a tonic effect on the body, nourishing it with many concentrated vitamins and minerals that are low in a fast & processed food diet that many americans try to subsist on. The herbs also have a purgative effect in that they strengthen the function of the liver & kidneys to eliminate wastes and toxins from the body.
Herbs are often combined with spiritual practices that help one to break addictive habits that have contributed to living in a state of being out of balance (dis-ease) that fostered the illness. The result can be a feeling of greater health and wellness than one had experienced before in life, even looking back long before the illness that pushed you to change. In native american traditions, symptoms of illness are messages to one to make changes to return the self to a state of balance, and the illness itself as a phenomena is regarded as a helper/teacher that is temporarily present to teach us the consequences of living in a way that is not in balance, and to motivate us to return to a path of healthy living. Thus one acts not from fear of an enemy, but from a focus on the goal of well-being.
The three of you are amazing women- all willing to take a solid stance for your beliefs.
My mother was an eleven year brain cancer free survivor- through the combination of modern science, love, G-d's watch and her own free will she outlived the odds. I must most importantly add that my late father's footstone reads "One of the greatest physicians of this generation" because like Dr. Meier he honored humanity; being a superlative diagonostician, weighing all protocols before administering a course of action.
Sometimes patients would pounce for immediate medical treatment; yet when his intuition felt that he needed to investigate a little further his response was "let's just wait and see"- few if any left him.
He practiced his passion for 38 years. Dr Meier resonates as one who actively embraces her Hippocratic Oath and so too should be highly commended for her significant role in advancing Palliative care.
AMY MAY ABUNDANT RADIANCE AND HEALTH BESTOW ITSELF UPON YOU.
P.S. I close in sharing Centerpointe Research of Beaverton, Oregon that has a wonderful Zen meditation CD which might speak to all.
Thanks to Amy Berman for having the courage to make an unusual life (& death) positive decision, and for having the courage to talk about it. I, too, have seen that when death and a sick body are regarded as the enemy & fought with poisons, the result is that one loses not only a peaceful death, but also one's chance at a peaceful life until that death, and instead the experience tends to be a life of predominately suffering followed by a suffering death, though often folks are amazingly courageous and cling to the good parts of life with their attention and will and manage to live and die with some dignity despite suffering.
I'm also appreciative of the fact that in addition to all the beneficial quality of life and the opportunity that she has to focus on experiencing well-being in every aspect of her daily life which seems to have had some life prolonging effects, her decision to voluntarily turn down aggressive poisonous therapies has also reduced the cost of her health care dramatically, which benefits everyone. While I would never suggest that the government should deny anyone a therapy they might want based on a cost analysis, her courageous unusual decision has declined expensive therapies that couldn't offer cure but only a short term extension of life in a much more miserable state which doesn't seem a good deal for anyone.
My Father of 79 lost his battle with terminal cancer early on Easter morning last week. When he and our family first heard of his fast growing cancer, we supported his wishes to seek a second opinion from a conventional cancer research center, which gave an opinion which concurred with the first. After three separate sessions of chemo, he was so sick from the side effects that he just gave up and accepted the outcome that was to be dealt to him.
It was and is my opinion from the onset that, given the chance with holistic modalities, although he may not be given the chance to live a longer life, he would be in a healing environment and all that it entails. I wish that palliative care included and/or focuses more on holistic options. It is my hope that holistic care becomes the mainstream in battling cancer, offering more positive modalities for those that are ravaged by this debilitating and heartbreaking disease.
May this email honor my Father and those who suffer from cancer. May we find it in ourselves to break out of the grip of mainstream cancer care that is almost forced upon us and find new ways to point us in the direction of positive healing using detox, nutrition, IV support and mind/body care. We are beings of light and it is light that will save us.
My best to you,
Crichton Gilcrease
I was able to see a movie about 10yrs. ago called "Wit" starring Emma Thompson and it was eye opening to see how hard it is to go through cancer treatment alone. This movie should be shown to anyone who needs to understand compassion and empathy.
Thank you so much for this show. I was diagnosed with breast cancer a month before Amy. Luckily for me, it was caught early. However, it was my second cancer; I had uterine cancer in '92.
I have made every effort to inform myself regarding choices. I first read "The China Study" by Campbell, and then "Healing the Gerson Way." I also read Suzanne Somers' book "Knockout" about doctors who are curing cancer with alternative therapies. There is so much information that is valuable. Dr. Burzinski, in Texas, has had incredible success with antineoplastons. There are documentary films about him and Dr. Gerson as well; Gerson used a vegan diet to cure his patients. Currently, Kris Carr, who has a website, is in remission from fourth stage liver cancer as a result of a vegan diet and a holistic lifestyle.
Please present more programs about this subject. Chemo and radiation are no longer always viable choices. The medical profession needs to be much more open minded about this, and patients must take their health in their own hands.
Bravo, Amy. Bravo, Diane