Cancer Patients Are Asking: If I Contract COVID-19 Will I Be Denied A Ventilator?
- Cancer patients across the country worry they’ll be denied limited medical resources based on “incurable” disease status.
- But patients on targeted therapy are living for years while managing incurable cancers.
- In a medical crisis, will doctors view “incurable’ patients worth saving?
- State governments and hospital systems are grappling with this issue now
RELATED: Coronavirus Guide For Cancer Patients
Read MoreCould Metastatic Cancer Disqualify a Patient for Care?
“I am living with cancer not dying of it,” says Feldman, 50. “I've fought hard to do that. My cancer may be chronic but I still have a lot of living to do." The question impacts all cancer patients, but it’s especially worrisome for lung cancer patients as COVID-19 attacks the respiratory system. The current regulations and policies covering for deciding who will get ventilators vary dramatically from state to state, and even hospital to hospital. For instance, Alabama’s Emergency Operations Plan proposes that health care providers “not offer mechanical ventilator support” to patients with health conditions including, “heart failure, respiratory failure, and metastatic cancer.”The proposal also includes withholding care for those with traumatic brain injuries, mental retardation, and dementia. Disability rights groups have filed federal civil rights complaints challenging this proposal.
RELATED: Lung Cancer Rising in Younger Women, Says New Study: What's Going On?
"In this time of crisis, we cannot devalue the lives of others in our community based on their disabilities. It's morally wrong, and it violates the law,” said James Tucker, director of the Alabama Disabilities Advocacy Program, in a press release
Incurable vs. Terminal: There’s a Difference
“Terminal does not mean that death is imminent,” says Feldman, who has lived — and thrived — with terminal lung cancer for six years. “When you are able to live and manage your cancer like a chronic disease, you’re not terminal at this moment.”
Feldman has EGFR positive lung cancer, which refers to a gene mutation in the epidermal growth factor receptor, a protein found on the surface of both normal cells and cancer cells. Tremendous advances have been made in the treatment of EGFR lung cancers in recent years. And new targeted drug therapies are the reason Feldman is thriving.
“My treatment is working really well,” she says. ” I'm not in remission but the disease is being managed by the targeted therapy I'm on. And with the way research is moving, I have other treatment options in the future.”
The Alabama Department of Public Health told NBC News on Friday that the ventilator rationing plan, which was drafted in 2009 and updated in 2010, offers guidance for providers having to make difficult decisions in the event of a public health emergency.
“When there are two or more patients needed to be placed on a ventilator and there is only one ventilator available, a tough choice has to be made and this document was solely intended as a tool for providers in making those hard choices,” the department said.
Having lung cancer doesn't necessarily mean that you are more susceptible to the coronavirus (COVID-19), Dr. Karen Reckamp, director of the Division of Medical Oncology at Cedars-Sinai, tells SurvivorNet.
“This is such a chaotic time. And trust me, we are all worried about those on the front line. My heart goes out to the medical professionals right now,” says Feldman. “They are risking their own lives, emotionally, talk about PTSD, it is crazy.”
And if she were actively dying, Feldman adds, she’d be “the first” to offer her ventilator to someone who could survive. The problem, she says, is that patient-care will now be determined by a diagnosis on paper — not by the quality of an individual life or the promise provided by a successful treatment plan.
“I’m 50 and healthy, my lung function is great. But if someone saw on paper ‘metastatic lung cancer, Stage 4A,’ my life would not be considered long enough to save. This is wartime triage, And, I get it, we’re not going to pass the triage test. But I’m not dying right now — I’m raising my kids.”
How Can Cancer Patients Respond?
First, take every precaution to avoid infection with the coronavirus, she says.
But if COVID-19 treatment becomes necessary, “contact your oncologist,” Feldman advises, “let them know what hospital you’re going to, so they can advocate for you with the emergency physicians.”
RELATED: The Top 10 Changes in the World of Lung Cancer Over the Past 20 Years
Revisit your Do Not Resuscitate orders. “A lot of cancer patients have DNRs, I have one. Should we revoke a DNR in light of the virus?” Feldman says yes. “If the cancer is killing you, you’re not coming off of the ventilator at the end of life. But with COVID-19, you can survive. You have a chance.”
As cancer screenings and treatments are delayed, it’s creating anxiety,” Feldman notes. “And the doctors who are telling patients to wait, don't even have the time to explain that it's okay to wait. But sometimes, it’s okay medically, to wait a month or so. People imagine that a one-centimeter tumor will grow to the size of a basketball. But nothing is going to grow that fast. Especially at stage 1, you can put a lot of surgeries off for a month or two.”
And if treatment can’t wait? There's a conversation among doctors on twitter, and I ask about handling things case by case, taking a different approach, sequentially, for instance: maybe they’ll start drug therapies before surgery, instead of after. Everyone is taking this on a case-by-case basis.
Advances in Late-Stage Treatment
Dr. Brendon Stiles, a thoracic surgeon at Weill Cornell Medicine and NewYork-Presbyterian in New York, agrees. “Immunotherapy has been a game-changer for lung cancer, and now its use is being expanded to people with earlier stages of the disease. "It's amazing to me now that you can have stage four lung cancer and actually not even need chemotherapy," he notes."
Immunotherapy harnesses the power of a person's own immune system to recognize and kill cancer cells. It's a really exciting area of development when it comes to treating lung cancer. "What people are most excited about is, over the long-term, people are at least raising the question: Can we see cures with immunotherapy and lung cancer?"
While immunotherapy research has been focused on advanced cancers, the hope is that, eventually, it can be used when treating patients with early-stage disease, after surgery, chemo, or a combination of the two. "That's really going to lead to survivors of this disease," Dr. Stiles said.
“I never used to use the word hope with lung cancer,” Feldman notes. “But there is hope now. It's so real that I decided to tattoo it on my arm as a permanent reminder.”
Jill Feldman’s Cancer Journey
At 13, Jill lost two grandparents and her father to lung cancer within a period of eight months.
Fourteen years later, her mom and a close aunt succumbed to the disease within a two-year period.
Feldman became an advocate for lung cancer patients. She was president of the LUNGevity Foundation in 2009 when the unthinkable happened: Jill was diagnosed with lung cancer herself. She was 39 and had four young children.
RELATED: Lung Screening With Low-Dose CT Should Happen For All
“Imagine how you would feel is you were diagnosed with the same disease that killed both your mom and your dad?” she’s said.
“I have non-small cell lung cancer EGFR+ del exon 19,” she explains. “I was originally stage 1,” she explains,”but in 2013, I re-diagnosed to stage 4.”
After two surgery and radiation, she continues on targeted therapy with the awareness that the cancer will develop acquired resistance to the drugs that are now working for her. “Lung cancer will be a lifelong roller coaster ride for me, but I am grateful that it can be managed as a chronic disease, for now.”
Learn more about SurvivorNet's rigorous medical review process.