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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Your shows are always good. This one was great! I kept thinking of a younger cousin who went through 4 1/2 years of torture -- several surgeries, rounds of chemo and radiation. We lost her but her courage, her desire to live has been an inspiration. PLEASE keep doing more shows on this subject.
I, too, have had Stage 111c Inflammatory breast cancer and Invasive Ductal Carcinoma since Dec. 2008. Due to lack of recognition of IBC by 2 docs, I have only had treatment of Arimidex and Zometa since Nov. 2009 after receiving 4 chemo treatments over 6 weeks during Oct/Nov/09. Nutritional changes have been my biggest adjustment: no meats except organic chicken; no processed meats/cheeses/dairy/added sugar (use stevia);drink almond milk; lots of fresh greens & veggies; whole grains; berries; no alcohol; no tobacco use (both a lifetime habit). Possible cause of IBC was taking Premarin for 20 years. My family history of Alzheimer's as well as my age(69) caused me to not choose aggressive treatment when told there was no cure, just treatments. Luckily, my doc 'listened' to me and agreed to palliative treatment methods. Two books were instrumental in my journey: Anti-Cancer-A New Way of Living and Eat to Live.. both excellent. Also, lost weight - very beneficial.
Thank you for further educating the public about Inflammatory Breast Cancer as well as less invasive treatment methods.
My brother was diagnosed with terminal renal cancer in April of 2009. He passed away in June, less than 7 weeks later. He did NOT have a general physician & the doctors who diagnosed & treated him at the hospital were very good at keeping information from him & his family & also very good at steering him to throw everything but the kitchen sink at the cancer. When asked how much time my brother had left, the response was "we don't tell the patient that information because it puts a limit in their minds." My brother was under state medicaid at this time. Our view is that the doctors took advantage of his not having a personal physician & were willing to use him - as long as HE was willing - to milk the system for every dime they could. He was NEVER offered the option of palliative care by anyone in the hospital - they only wanted to talk to him about aggressive & experimental treatment. We, his family, are convinced the little bit of treatment they did give him stole from his quality of life & in turn reduced it to a mere 7 weeks from diagnosis.
When I was diagnosed with triple negative ductal carcinoma of the breast in Jan. 2011 I had been saying for 20 years that I would never let the medical community try to kill me with aggressive treatment due to the fact that I've had a chronic pain and fatigue syndrome since birth (now 72.) That was reaffirmed by the fact triple negative meant they could not direct the chemo and would have attacked my entire body in trying to "cure" me.
The oncologist seemed startled and when told I would seek to prolong my life with diet, meditation, and supportive supplements, she told me I would need the book (others mentioned) called Anticancer: A New Way of Life by David Servan-Schreiber MD PhD. It's been 15 months and I feel better than I did before that mammogram.
My worst problem was having twice a week phone calls from the Tumor Center with nurses questioning me and trying to influence me to take the aggressive standard treatment. Are you just scared? one asked me. Likewise, I couldn't attend the "support group" because those strangers were so disturbed by my decision that they focused on changing my mind.
My primary physician had been fully supportive and, after my lumpectomy, I transferred my case to her, leaving the Tumor Center and Oncologist. She is so pleased to see me still feeling well, doing what I enjoy and even helping with two toddler great grandsons a bit each week. She feels my choice should be added to the "Standard of Care" for older cancer patients.
Palliative care was never offered to me. Since each patient is worth over $2 million to the healthcare industry, I am not surprised. If/when I have a reoccurrence of my cancer, I will be asking where I can receive this. Thank you so much for something to add to hospice care.
My mother-in-law recently passed away after 7 years of fighting rectal cancer (only 55 years old). She went through chemo, radiation, multiple surgeries… It was so painful for us to watch her go through her struggles with the Kaiser healthcare system. I never felt that she had complete or balanced care. For many years she took endless pain pills to relieve her chronic pain. I don't know if any holistic or palliative care was ever offered to her. I just felt like she was so alone. Even though we, her family, were present for moral support, there was not much more we could offer. Finally, about 3 mos before she passed, she accepted hospice care in her own home, but even then, she didn't seem to really benefit emotionally/spiritually from it. The only relief was she no longer had to pay for her costly medications or supplies. I guess everyone has their own way of fighting it, but in the end, she seemed so scared and not accepting of what was happening to her body.
I would hope if I ever had terminal cancer, I would want to seek out the support of others, find some spiritual way of connecting, by way of yoga or meditation, etc, focused on being balanced and accepting of the end of life. Of course, that's a lot easier said than done…
On a separate note from palliative care, I found it is extremely important to get personal and financial affairs in order before you are unable to. My mother-in-law had no will, no financial durable power of attorney, had not added her husband (of 8 years) to accounts/granted access, etc etc. On top of being in medical, credit card, private loan and IRS debt, now my father-in-law is buried with the troubles left to him that could have been taken care of well before she passed away.