To take control of cancer care, ask these questions
September 15, 2013 | by Nicole White
As the population ages, and thus becomes more prone to cancer, the nation's health care providers will have to make significant changes to prepare for the influx of new patients and to ensure that current patients are getting the best treatments possible, says a new Institute of Medicine report.
Cancer is the No. 2 cause of death in the United States, after heart disease, causing more than half a million deaths each year. An estimated 1.6 million new diagnoses are expected in 2013, and that number is expected to balloon to 2.6 million cases by 2030.
Currently, many treatment decisions are not based on sound scientific evidence, the report says, and patients may not understand their choices or what to expect. For example, the report says, two-thirds of cancer patients with poor prognoses incorrectly believe that their treatments could cure them.
One of the report’s top recommendations was that health care providers and institutions must find ways to help patients make more informed decisions, providing them with clear information on the pros, cons and costs of treatments.
Betty Ferrell, Ph.D., R.N., director of the Division of Nursing Research and Education at City of Hope, served on the high-profile panel behind the report. She distilled the report's message this way: Consumers need to take charge of their care.
“When you hear the word 'cancer,' even patients who are normally very assertive, articulate people can become totally diminished and humbled,” said Ferrell. “People who would otherwise be fighting for their lives become mute in the clinic. A strong message in the report is that we, as health care providers, need to be developing good methods, developing how we can best convey information to patients and their families to make sure that people don’t fall through the cracks. Patients, you really have to stand up for yourself. Be informed. Ask questions.”
As science unlocks new treatments for cancer, treatment for the disease is growing increasingly complex. City of Hope is a comprehensive cancer center, the highest designation bestowed by the National Cancer Institute, and offers leading-edge treatments even as it monitors and helps develop other technologies. But not all institutions or doctors are aware of the latest advances – or have the expertise to determine if they’re appropriate for the individual treatment.
The report recommends a list of questions that patients should ask in the wake of a cancer diagnosis.
Questions to ask clinicians
- What is the goal of treatment? Is it directly treating the cancer, improving my symptoms or both?
- How long does the average person with this cancer live?
- How will I feel?
- What is my likelihood of a cure?
- If I cannot be cured, will I live longer with treatment? How much longer?
- Will I feel better or worse?
- Can I receive palliative care focused on the quality of my life and my family’s life during my cancer treatment?
- What options do I have if I don’t want to continue my cancer treatment?
- When should I think about hospice? Can I meet with hospice now, when I am well?
- How often should we check in about my care plan?
Questions about treatments
- What are my treatment options?
- Why do I need this treatment?
- How does this treatment compare with other treatment options?
- What things are likely to happen to me?
- Am I healthy enough to undergo the treatment?
- What are the risks and benefits of treatment?
- Are there any side effects?
- Will treatment make me feel better or worse?
- How many times have you done this procedure?
- What is the cost of the treatment?
- What clinical trials are available? What are the potential benefits of clinical trials? Am I eligible to participate? How do I enroll?
- Which hospital is best for my needs?
- Which clinicians will coordinate my care?
- How do you spell the name of that drug?
- Will this medicine interact with medicines I am already taking?
The report also identifies a need for solid survivorship programs. Once treatment is finished, and the patient is determined to be cancer-free, there’s more to do than sign up for awareness walks, wear ribbons and celebrate. They need a solid survivorship plan.
Questions about follow-up care
After receiving their surgery, chemotherapy or transplant, Farrell recommends patients ask:
- What drugs did I receive?
- Are there any delayed side effects?
- What kind of follow-up care will I need?
- Should I come back to the center that treated me for my cancer, or return to my community practitioner?
On the other end of the spectrum, patients need to know more about palliative care – a topic on which Ferrell is an expert. She's authored many peer-reviewed papers and books and has served as chair of the National Consensus Project for Quality Palliative Care, which established national guidelines for palliative care. Palliative care isn’t just for patients at the end of their lives. Palliative care should commence with the beginning of cancer treatment, Farrell said.
“Providing family support, addressing psychological needs, managing pain and symptoms – these are all good elements from the first day of care,” she said. We need attention to the symptoms and the quality of life from the day of diagnosis.”
With a strong team of physicians and nurse practitioners devoted to palliative care, Ferrell said City of Hope is ahead of the game in providing this kind of care. She also heads a National Institutes of Health-funded study examining the effects of providing comprehensive palliative care services to lung cancer patients, including education for patients and family caregivers and highly coordinated care.
“We are well-positioned in that we can not only say we know what the IOM is recommending – we’re already doing it,” she said.
Patients should be concerned about quality of life from the beginning, focusing on treatment that respects their values and their wishes. As health care providers gear up to improve care and brace for growing numbers of cancer cases, patients have the power to take charge of their own care.
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