Make it clear to terminally ill patients, so they can focus on end-of-life preparations
By Jane E. Brody, Published The Straits Times, 24 Nov 2012
WHEN my husband learnt he had advanced lung cancer, he did not even want to speak to an oncologist about chemotherapy. He saw no point in treatment that could not cure him and might make him feel worse.
Not so, though, for a majority of patients diagnosed with cancers of the lung or colon that have spread well beyond their original sites and are not curable by any drugs in the medical armamentarium. Most patients with these Stage 4 cancers who choose to undergo chemotherapy seem to believe, incorrectly, that the drugs could render them cancer-free.
That is the finding of a recent US study of nearly 1,200 patients with advanced cancers of the lung or colon. Overall, 69 per cent of those with Stage 4 lung cancer and 81 per cent of those with Stage 4 colon cancer failed to understand "that chemotherapy was not at all likely to cure their cancer", Dr Jane Weeks, an oncology researcher at the Dana-Farber Cancer Institute in Boston, and her colleagues reported in The New England Journal of Medicine.
When patients do not understand the limitations of such treatment, their consent to undergo it is not truly informed, the authors concluded.
This is not to say that chemotherapy is pointless when the cancer is far advanced. Various drugs, some with limited toxicity, can be used as palliatives, perhaps shrinking tumours temporarily to relieve symptoms, slowing the cancer's growth and prolonging the lives of some patients.
"If you think chemotherapy will cure you, you're less open to end-of-life discussions," Dr Weeks said in an interview.
When patients pursue chemotherapy under the false belief that they still have a chance for a cure, it often delays their transition to the comfort of hospice care.
When patients spend only a few days or a week in a hospice, care- givers do not have enough time to get to know them and their families and offer the physical, emotional and practical benefits a hospice can provide.
Dr Weeks said continued chemotherapy involves more trips to the hospital, blood draws and X-rays, whereas a hospice attends to patients' symptoms and concerns, and encourages them to leave meaningful legacies. Hospice care also cuts medical costs.
When my husband entered a hospice after two miserable weeks in the hospital undergoing palliative radiation, he experienced such relief that he said cheerfully, though in jest: "What if I decide I want to live?" He then enjoyed a treasured last visit from two of his grandchildren.
'Optimistic bias'
COMMUNICATION is a two-way street; doctors and patients alike contribute to patients' failure to appreciate medicine's limited ability to treat advanced cancer.
In an editorial accompanying the journal report, Dr Thomas Smith and Dr Dan Longo pointed out that "people have an optimistic bias". Despite a grim prognosis, this bias prompts patients to believe treatment can cure them.
"Even with repeated discussion, about one-third of patients are not able to say they have a disease from which they will die in a year or so," Dr Smith, an oncologist and director of palliative care at Johns Hopkins Sidney Kimmel Comprehensive Cancer Centre, said in an interview.
"Our job is not to force them into acceptance but to encourage them to plan for the worst while hoping for the best," Dr Smith said. "Such patients have better outcomes - less depression, less distress, and they're more likely to die comfortably at home."
Cultural and racial factors, and most likely religious beliefs, influence acceptance of the futility of continued treatment, Dr Weeks said.
In her study, non-white and Hispanic patients were more likely than whites to believe that chemotherapy could cure them. But surprisingly, patients' educational level, degree of disability and participation in decision-making were not associated with inaccurate beliefs about chemotherapy.
What can make a huge difference, Dr Smith said, is how and how often doctors discuss options with patients and describe the potential of continued treatment. He and Dr Longo suggested that practitioners master "the conversation known as 'ask, tell, ask', which consists of asking patients what they want to know about their prognosis, telling them what they want to know, and then asking, 'What do you now understand about your situation?'".
Among the questions Dr Smith said doctors should be asking are: "How much do you want to know about your cancer? Who would you like to include in discussions about your care? Would you like me to write down the important points? What are you hoping for? Who are your other doctors, so I can communicate with them?"
Continuing discussion
FINALLY, rather than asking the patient "Do you have any questions?" the doctor should ask: "Now that we have discussed this, what is your understanding of your situation?"
And rather than having this conversation only once, Dr Smith said: "It should be repeated at every transition point."
He and Dr Longo also recommended that oncologists state the patient's prognosis on the first visit, appoint someone in the office to discuss advance directives, schedule a hospice information visit, and offer to discuss prognosis and coping at each transition.
Using this approach, practitioners in the United States Oncology Network, a group of community- based oncology doctors, have doubled the time patients spend in hospices, lowered costs, alleviated patients' symptoms, reduced stress on caregivers and often lengthened survival, Dr Smith said. Studies show that cancer patients in hospices live weeks to months longer than comparable patients not in hospice care.
When doctors fail to give direct, clear information, Dr Smith suggested that patients ask: "What is my prognosis, really? What are my options? Can I meet the palliative care and hospice teams?"
He noted: "This is the hardest conversation for doctors to have. A lot of doctors wait for someone to bring it up." If the patient does not, then a family member can initiate the needed discussion.
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