Posts from the ‘Programs’ Category
On Tuesday, March 28th she will review strategies for having important conversations with your doctor, options for end of life care, and how to access California’s End of Life Option Act at the Cancer Support Community Valley/Ventura/Santa Barbara. For those who can’t make it to the workshop, Erika Ruiz was kind enough to provide the following information for our readers.
End of Life Options and Medical Aid in Dying
by Erika Ruiz
We live in a death denying culture, and fear often keeps us from having meaningful conversations with our doctors and loved ones about what we want and don’t want at the end of life. It’s sometimes not easy talking about end of life issues, but it is important to have end of life planning conversations early which leads to planning for a good death and consciously thinking through your priorities and options, and the options in California now include medical aid in dying.
Have you heard of California’s End of Life Option Act? This law is California’s medical aid in dying law, similar to Oregon’s Death with Dignity Act, and it went into effect on June 9, 2016. This law gives terminally ill adults the option to get a doctor’s prescription for medication they may decide to take to end unbearable suffering, by dying peacefully in their sleep.
California is one of seven jurisdictions in the United States that now authorizes medical aid in dying. Along with California, medical aid in dying is authorized in Oregon, Washington, Montana, Vermont, Colorado and Washington D.C.
In Oregon, where the law has been in place for 20 years, many people and their medical providers were confused about the law, and heartbreakingly, were waiting too late to start the process once their suffering or pain became unbearable, and so the aid-in-dying option was not available to them despite their eligibility and despite the amount of pain and suffering they were in.
Because people lack accurate information, they wait too long to initiate end of life conversations and decision-making processes with their doctors and loved ones. We want to learn from Oregon and make sure that all Californians have access to their full range of end of life options. This is why Compassion & Choices has launched the bilingual California Access Campaign. The Access Campaign focuses on educating the public and medical professionals about all end of life options, including medical aid in dying.
Who is eligible for medical aid in dying?
To be eligible under California’s law, an individual must be:
- An adult
- Terminally ill
- Given a prognosis of six months or less to live
- Mentally capable of making their own healthcare decisions
- A resident of California
- Acting voluntarily
- Making an informed decision which includes being given information about all end of life options
- Informed that s/he may choose to obtain the aid in dying medication, but not take it
- Capable of self-administering and ingesting the aid in dying medication
How long does the process take to request and obtain the aid in dying medication?
The process can be a lengthy one (and may not be successful) if you do not have a supportive healthcare team. The average length of time is between 15 days to three months and requires at least two doctor visits. Therefore, it is very important for individuals who may want to access the law to talk to their doctors early.
What cause of death is listed on the death certificates of individuals who accessed medical aid in dying?
The underlying illness should be listed as the cause of death. The law specifies that a death resulting from self-administering aid in dying medication is not suicide
Does accessing medical aid in dying affect a person’s will or insurance?
No, accessing medical aid in dying does not adversely affect a person’s will or insurance. The law specifically mandates that wills, insurance, contracts and annuities are not affected if a qualified individual shortens their dying process by ingesting aid in dying medication.
Note that no one but you can make this request to your doctor(s). The request cannot be made by a designee or third party (including relatives or anyone with power of attorney), and the request cannot be made via an advance healthcare directive.
Ask your doctor and medical providers now whether they will support your end of life choices, including medical aid in dying. This will encourage your medical providers to listen to your priorities and become prepared to provide you with the treatment you may want in the future. Compassion & Choices provides assistance to physicians through our Doc2Doc Program, which offers free, confidential telephone consultation with a seasoned medical director. Please feel free to give your physician the Doc2Doc phone number: 1-800-247-7421.
Compassion & Choices
3055 Wilshire Blvd, Suite 1010
Los Angeles, CA 90010
Erika Ruiz is the Central California Outreach Manager for Compassion & Choices, a national nonprofit organization working on improving care and expanding choice at the end of life. Her interest in advocating for and educating on end of life care options stems from her experience witnessing her father suffer a difficult death in an ICU. She started volunteering with Compassion & Choices during the legislation of the End of Life Option Act and now educates Californians (in English and Spanish) on their full range of end of life care options.
Dear Cancer, It’s Me
by Danielle Rosoff
I Won’t Let You Win
It’s me: the girl whom you first visited fourteen years ago.
It’s me: The girl who fought you and won thirteen years ago.
It’s me: Danielle Rosoff.
On October 19, 2001, when I was only fourteen months old, you came to visit me and changed my life. I was diagnosed with stage three Neuroblastoma. Even though I was too young to remember when you first arrived, I remember everything that came in the years afterwards. When you first came to visit, you manifested as a fever. Since I was my parents’ first child and had never been sick before, they were nervous and took me to the doctor right away. The initial doctor’s appointment was on a Monday, and the doctor said that if the fever didn’t break we had to come back in three days. I continued to have a fever, and so we returned on Thursday. The doctor said I didn’t look well, and ordered a blood test. He said he would have the results the next day.
On Friday, we returned. He said the blood test showed inflammation and ordered an abdominal ultrasound, because I had had an extended belly for weeks (although he had previously done a physical examination of my belly and said there was nothing to worry about). Well, Cancer, although you had been here for a while, you finally made your presence known to us, and the fight began.
Round One: I was admitted that very same day to Children’s Hospital Los Angeles, where my doctor saved my life. Luckily, my doctor found you and figured out what you were before it was too late. My parents were terrified. You came out of nowhere. Their baby had fallen victim to you. During the time of diagnosis, I had many tests including a needle biopsy and an exploratory surgery to determine just how bad you were. The results of the needle biopsy showed that the cells had burst, which suggested that they were weak. Therefore, Cancer, the doctors said that there was a 50/50 chance that you would win this fight. Because the cells had burst and they couldn’t properly stage you, the surgeons did an exploratory surgery through my abdomen. The results of this test suggested that my type of Neuroblastoma was better than they had anticipated. In fact, I was the first child in the history of Children’s Hospital Los Angeles to show favorable treatment characteristics of the tumor, which meant that I had a better chance for survival. I was lucky. Each year, only eight children in a million get diagnosed with good genetic indicators, and I was blessed to be one of them.
Round Two: Beginning in late October 2001, I had several minor surgeries followed by six rounds of chemotherapy and a tumor resection in March 2002. The doctors thought that the surgery was very successful and that you had been fully removed. However, because we couldn’t know whether or not you were still there microscopically, we followed surgery with two more rounds of chemo.
Round Three: Ultimately, it was a knock out! I beat you, Cancer, however I continue to have testing at least once a year. I have been free of you for the last thirteen years. As you can imagine, the fight against you was hard mentally, physically, and emotionally for both me and my parents. As a result, you have changed my life for better and for worse.
On the positive side, the fact that you took over my body for a year has led me to want to help people and to be an activist in many cancer organizations. So, I guess this letter is a thank you note. Because, of you, Cancer, I get to go to my home away from home each year Camp Ronald McDonald for Good Times. This is a camp for cancer survivors and their siblings. Camp has also changed my life, but in a completely positive way. It gives me an opportunity to meet others who have been in similar situations. I get to meet people who have struggled, and continue to struggle, the same way I have. At camp, there are many kids who continue to fight you, Cancer, and many kids have disabilities due to their treatment. Camp provides me the space to offer other campers assistance, to talk or listen to other campers, and to offer a hug to someone in need.
Cancer, I don’t think that you know everything about me. My third grade teacher was a special person, whom I learned was also a cancer survivor. Because of her, I felt comfortable enough to ask her to assign our class an activity to support pediatric cancer patients currently in the hospital. My class wrote letters of support to the inpatient kids at Children’s Hospital Los Angeles. That same year, I decided to donate my hair to “Locks of Love.” Afterwards, my hair was so short and my glasses so old looking that people teased me and called me “grandma.” I didn’t care, because I knew that I had helped someone in need. You see, Cancer, you had made me strong. Third grade was also the first year that I participated in Relay For Life, which is the American Cancer Society’s major fundraiser. To this day, Relay continues to be one of the major ways I help support the cancer community. You won’t understand this, Cancer, since you tend to take things away, but it feels great to give. I want to get rid of you forever, Cancer, so that you can’t ever drain the life of another person.
Finally, Cancer, you have also impacted many of my family members, both negatively and positively. Although painful, the experiences have given me the opportunity to provide love and support. My maternal grandmother and grandfather have been victorious over you, Cancer. During their battles, I showered my grandparents with constant love and support, just as they had done for me. My grandmother saw me beat you, and with my constant words of encouragement, her willpower, and the doctor’s skill she knew that she could beat you just like I did. On the other hand, my paternal grandfather lost his fight with you, Cancer. Unfortunately, he was diagnosed with stage four pancreatic cancer. He was initially given four to six months to live, but, you took him in just twelve days. I like to think that, because I had cancer, I was able to talk to him about it and connect with him on a higher level due to our shared experience. Overall, my past has led me to feel empathy and compassion towards others. Because of my history, I believe I can help people who are going through cancer. I know that a kind word or a smile can make all the difference in someone’s life.
On the other hand, cancer, you have also changed my life for the worse. Even thirteen years into my remission, I still have to go to the hospital at least once a year. I go through blood tests, heart ekg’s and echocardiograms, hearing tests, and multiple other tests because of you. Next, the doctors believe that the chemotherapy that I endured during my brain’s development has affected my learning, memory, and attention. As a result, I need to work double or even triple the amount that others need to work to retain information and do good work. Finally, even though I don’t remember you in great detail, Cancer, I still remember you as the most terrifying experience in the world. I remember lines being shoved up my nose, having to drink terrible tasting liquids, the horror of being at the hospital, and the terrors of a needle. To this day, I won’t drink juices and still fear needles as one would expect.
Because of my experience with you, Cancer, when I grow up I would like to be a psychologist so I can talk to people battling cancer and other diseases in order to help them cope with their struggles. Furthermore, I think that one of the greatest medicines (besides actual medicine!) is laughter. That’s why I also want to go to hospitals to visit patients and make them laugh and be happy.
Cancer, you have changed who I am as a person. Thank you for making me compassionate, caring, thoughtful, and interested in the well-being of others. Most of all, thank you for giving me the gift and the ability to enjoy life to the fullest. Without you, I would definitely not appreciate life as I do or have the wisdom to make well thought out life decisions.
It’s me: the girl whom you first visited fourteen years ago.
It’s me: The girl who fought you and won thirteen years ago.
It’s me: Danielle Rosoff, and I won’t let you win.
What’s on the horizon for breast cancer?
By Dr. Nimmi Kapoor
Research in breast cancer is very fast-paced with an emphasis on earlier detection and easier treatment regimens that minimize harm to patients. I make it a priority to “stay on-top” of the latest and best advances in these aspects of breast health and cancer care so I can give my patients the best advice.
Detecting breast cancer involves at least two aspects of science and technology: having the best equipment for screening and knowing who needs to be screened. The revolution in breast cancer screening equipment has already made a big impact on early cancer detection. Dedicated breast MRI has been the most sensitive method of detecting breast cancer for the past decade, however is still costly and, for some, like me, claustrophobic. 3D-mammography, or tomosynthesis, has proved to decrease call-backs (that awful phone call where they tell you they aren’t sure they found something, so they need to do some more testing) and it has a higher rate of detecting cancer. Tomo, as many call it, is better than a regular mammogram and is starting to get covered by insurance more regularly. Coming-up, I think we will hear more about molecular breast imaging which is kind-of going to be in the middle of 3D mammography and breast MRI in ability to detect cancer at it’s earliest stage.
Figuring out who, and when, to be screened is another challenge. Recently, the USPSTF and ACS both changed guidelines for screening to suggest that average risk women should be screened at age 50 instead of age 40. The real challenge is understanding who is average and who may have a higher risk. We offer a sophisticated “Risk Assessment” program that takes into account personal and family history risk factors to give each woman personalized guidelines for screening. For some women, this screening will involve genetic testing to identify a hereditary risk. Genes, such as BRCA1 and BRCA2, are well-known to increase the risk of breast cancer over 50%, however we now know of over 30 genes that can be implicated in cancer development that can be inherited. Multi-gene panel testing has now become part of standardized genetic testing for people who meet appropriate testing criteria.
As a surgeon, I have watched the history of breast cancer treatment expand and then condense to now eliminate some of the basic treatment regimens we used to apply to all patients. Not everyone needs a mastectomy, or an axillary lymph node dissection, or radiation, or chemotherapy. We have entered the era of “tumor genomics” to understand tumor biology so well that we can predict which tumors are more likely to recur and which are more likely to benefit from chemotherapy. There are now research trials that randomize patients with Stage 0 breast cancer (DCIS) to no surgery and Tamoxifen only, with close observation of course. Tumor immunology will also be up-and-coming as we learn to create individualized targets for each person’s cancer.
In all, I am still glad I chose to become a breast surgeon as all of these changes are fascinating and are sure to bring about improvements in care and longevity for today’s thrivers and tomorrow’s patients.
“Having cancer was one of the greatest gifts I was given, after marrying my husband and having our children.”
People who haven’t been touched by cancer think I’m nuts when I say that. And while I wouldn’t wish cancer on anyone, I’m grateful to the diseasethat prompted me to take a long, hard look at what I was doing in my life, how I was conducting myself and what I was bringing to all my relationships.
This introspection brought me to energy healing, specifically Reiki, and to working with dreams as a healing modality, and to mindful meditation. All these practices are contemplative, but meditation is always available to me whether I’m making time to sit in meditation or finding myself becoming tense or triggered during the course of my life and can focus on my breathing to calm my mind and my body.
Now at 10 years of cancer “thriver-ship” I am now teaching meditation. I’m grateful to the Cancer Support Community for allowing me this opportunity to bring these techniques and my insights to others confronting this disease or caring for or loving someone who is.
Perhaps Pema Chödrön says it better:
“Why Meditate? Meditation is about seeing clearly the body that we have, the mind that we have, the domestic situation that we have, the job that we have, and the people who are in our lives. It’s about seeing how we react to all these things. It’s seeing our emotions and thoughts just as they are right now, in this very moment, in this very room, on this very seat. It’s about not trying to make them go away, not trying to become better than we are, but just seeing clearly with precision and gentleness…[We] work with cultivating gentleness, innate precision, and the ability to let go of small-mindedness, learning how to open to our thoughts and emotions, to all the people we meet in our world, how to open our minds and hearts.” – Pema Chödrön
Ziona Friedlander, a member of the CSC and a cancer thriver herself, is an experienced meditator as well as a certified Reiki Practitioner and Dream Tending® coach. She facilitates meditation classes for groups and individuals on a regular basis and upon request.