When my friend suggested to his oncologist that it was time for hospice, his doctor said it wasn’t time to “throw in the towel.” Sadly, my friend died nine days later, with only a week of hospice care. In that week, the hospice nurses and chaplains provided him and his family a wealth of relief, compassion, and care. I regret that he did not have more support for his physical symptoms and emotional needs in the last months of his life.
Hospice services are very important in helping terminally ill patients and their caregivers manage their disease and receive nursing and social work support. Yet, patients often do not receive hospice services long enough. According to the National Hospice and Palliative Care Organization, the median length of hospice care is less than 19 days, and more than a third of individuals receive hospice care for a week or less.
There are many reasons that hospice is not utilized as much as it could be, and surely one is that patients and their families do not want to “give up.” To be eligible for hospice, patients must forgo any treatment other than services necessary for management of terminal illness. Essentially, we require people to “throw in the towel” on any active treatment in order to get the symptom management and other help they need.
Recently, the federal government announced a plan to give Medicare beneficiaries more power to choose the kind of care they want if they are diagnosed with advanced cancer or another serious disease. Under a pilot program called the Medicare Care Choices Program, seniors will be able to receive treatment in addition to the palliative care services provided through hospice. This gives patients more control over their treatment options and will allow them access to chemotherapy, radiation, or other services that are typically classified as “curative.” Eliminating the arbitrary classification of treatment as “curative” and therefore incompatible with hospice will remove one of the barriers to an individual choosing hospice.
This is a meaningful change for cancer patients and one that we have advocated for years. In 2006, Representative Lois Capps introduced the Comprehensive Cancer Care Improvement Act to improve the delivery of care to cancer patients, including a Medicare demonstration project to allow for hospice care concurrent with curative treatment. Steadfast in her determination, Rep. Capps reintroduced the same bill in two more Congresses, until the “concurrent care program,” now the Medicare Care Choices Program, was enacted through the Patient Protection and Affordable Care Act. This program holds the promise of doing the right thing for individuals with advanced illness and also the health care system. We look forward to the results of the pilot, which, if successful, could be expanded and made available to more seniors.
Rep. Capps is now championing a revised version of the cancer care legislation that would make another important reform in the Medicare program. The Planning Actively for Cancer Treatment (PACT) Act (HR 2477), would establish a Medicare benefit for cancer care planning services for all Medicare beneficiaries with cancer, not just those with advanced cancer. Just as the hospice program will give the patient the power to decide the elements of their care, cancer care planning will provide patients the tools to make informed decisions about their cancer treatment and help prepare them for their chosen treatment.
Imagine being diagnosed with a life-threatening disease and, faced with your own mortality, having to make difficult decisions and navigate complex treatment options without a plan to guide the way. That is the situation many individuals with cancer face today, and it can make an already difficult and stressful time even more challenging.
Research has confirmed that coordinated cancer care outlined in a written care plan — care that integrates active treatment and symptom management — improves outcomes, increases satisfaction, and reduces the use of health care resources. The PACT Act would encourage doctors to create a written care plan based on shared decisions made with the patient’s active involvement. It would also benefit patients who have finished treatment by providing a written summary of care the patient received and information about monitoring and follow-up support.
The Medicare Care Choices Program is a step in the right direction toward improving the quality of care that cancer patients receive. Cancer patients should not be forced to make the decision to “give up” their hope of treatment in order to receive physical, emotional, social, and spiritual support. Now we need Congress to take the next step and ensure that all Medicare patients with cancer have access to care planning to give them — and their families — a roadmap for their cancer journey.
Shelley Fuld Nasso is CEO of the National Coalition for Cancer Survivorship.