Chemotherapy administered for highly advanced lung or colon cancer may prolong life by many months and help manage certain symptoms. It can't, however, cure the cancer. Yet, in a study reported in the New England Journal of Medicine on October 25, 2012, most newly diagnosed patients who underwent chemotherapy for advanced lung or colon cancer mistakenly believed the treatment could provide a cure.
The study used data collected from CanCORS. Among 1,274 patients with end-stage lung or colon cancer, more than 93 percent opted for chemotherapy after discussing the treatment with their doctors. Most patients who chose chemotherapy believed the treatment would extend their lives. Sixty-nine percent of those with lung cancer and 81 percent with colorectal cancer didn't seem to understand that chemotherapy wouldn't cure their disease.
Such a serious misconception can compromise patients' abilities to make informed treatment decisions, says the study. An accompanying editorial by Thomas J. Smith, M.D., of Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, and Dan L. Longo, M.D., of Brigham and Women’s Hospital, suggests that some doctors need to better relay to patients pertinent information that would help them realize the seriousness of their prognosis.
The editorial proposes that doctors start by asking patients and their families what they want to know about their prognosis.
Having a tough talk
In some cases, doctors may be reluctant to deliver bad news or may not have told patients outright that their disease couldn't be cured. Doctors might worry that the emotional impact of bad news could send patients into a depressive state, but earlier studies have shown this to be a false notion.
In fact, knowing their prognosis may help patients and their caregivers cope with illness better. Doctors can help by encouraging discussions about a patient's feelings, providing emotional support and offering a caring and trusted presence during a difficult time.
Getting palliative care concurrent with usual cancer care improves patients' understanding of their prognosis and curability. It also improves quality of life and reduces depression, anxiety and caregiver distress. And patients who use palliative care live just as longor longerthan patients who don't use it.
On the other hand, some patients may refuse to believe they're terminally ill and opt for more treatment. This may be due to a false sense of hope, an inclination to put an unrealistic "spin" on circumstances. But false hope can be counterproductive by robbing people of their ability to make sound decisions and preventing them from acknowledging symptoms and side effects that their doctor should know about. It also leaves the family with regrets about how they could have spent those valuable last weeks and months and engenders needless suffering.
Making your own end-of-life decisions
It's understandable that someone with a terminal illness might want to postpone discussing the future. But as these studies suggest, if you're in this situation, you can benefit from objectively assessing your own options, especially regarding the pros and cons of aggressive treatment.
That's where having an honest conversation with your doctor comes in, which should be done as soon as possible. Your doctor can explain what to expect and offer possible approaches backed by scientific evidence. Armed with this information, you can make a sound decision that's right for you. And rememberbringing up the subject is hard for doctors to do, so your own doctor may need some prompting.
What are palliative care and hospice care?
Palliative care is specialized medical care for people with serious illnesses that focuses on relief of symptoms and improved quality of life for both patient and family. Palliative care is appropriate at any age and any stage in a serious illness and can be provided together with curative treatment. If you have a serious illness, you don't have to wait until you're near the end of life to receive palliative care.
Palliative care is provided by a team of doctors, nurses and other specialists who work with a patient’s other doctors to provide an extra layer of support. Hospice care, in contrast, is specialized care focused on providing comfort near the end of life.
Thomas J. Smith, MD, Professor of Oncology, Director, Palliative Medicine Johns Hopkins Sidney Kimmel Comprehensive Cancer Center
Do doctors really not talk to patients at length about end-of-life care? Yes and no. All doctors tell people when their disease is not curable. But from that point on, we talk about chemotherapy [for people with cancer] and avoid the hard discussions, such as:
"You have six months, on average, left to live. How do you want to spend that time? Do you have an advance directive? Any family or spiritual issues to work on? Where do you want to die, when it comes to that? Have you started your 'life review'how you want to be remembered?"
Trust me, as a doctor, it is so much easier to focus on the chemo! Your doctor should openly discuss palliative and hospice care with you at the onset of a life-limiting prognosisand offer to revisit the issues whenever the cancer grows or the prognosis changes. Oncologists should schedule a hospice information visit with patients and their caregivers at least three to six months before expected end of life, which is quite possible to predict for many diseases.
Palliative care can decrease anxiety and depression and improve quality of life. Patients in a hospice or palliative care program have a better chance of dying at home than in other settings, as well as living better and even possibly longer. A hospice program can help such patients live out life as comfortably as possible.
Source: Prepared by the Editors of The Johns Hopkins Medical Letter: Health After 50