The decision to go on hospice, a health care option centering on symptom management and support of the patient and family in the last six months of life, usually requires cancer patients to make a difficult choice: stopping treatment measures intended to cure their disease.
Thus, to some patients, starting hospice can feel like giving up, despite evidence showing that patients with advanced cancer who choose hospice have better quality of life and live longer compared with patients with advanced cancer who continue active treatment.
Some organizations are trying new approaches that allow patients with advanced cancer with a life expectancy of six months or less to receive both hospice services and cancer treatment together, a concept often called concurrent care or open access.
Since 2009, patients who are terminally ill and are treated through the Veterans Health Administration, part of the Department of Veterans Affairs (VA), have been able to choose concurrent care. A study published Nov. 22, 2018, in Supportive Care in Cancer, based on interviews with 76 palliative care, oncology and hospice providers at six VA medical centers, found that hospital staff valued the concurrent model, which helped them ease patients into the decision to start hospice without having to ask them to withhold treatment.
“My experience is that people tend to delay enrollment into hospice because they’re holding on to chemotherapy or radiation,” says the study’s lead author, Cari R. Levy, a researcher and geriatrician specializing in hospice and palliative care at the VA Eastern Colorado Health Care System in Aurora. “If they can do both, they end up stopping treatment earlier and just do hospice.”
The Medicare Care Choices Model (MCCM), a pilot program launched by the Centers for Medicare and Medicaid Services (CMS) in 2016, allows terminally ill patients, including cancer patients, to receive active treatment in addition to hospice services. These patients can undergo chemotherapy or radiation through their medical center while receiving hospice services at a facility or at their home. Hospices that participate in this pilot program receive $400 per month from Medicare for each patient who takes part.
However, the first evaluation of the program, released in September 2018, found that patient enrollment was lower than expected, largely because many patients didn’t meet eligibility criteria for the program. In addition, a quarter of the hospices that signed on for the pilot program withdrew from it. CMS plans to take steps to improve patient enrollment so researchers can better measure how the program affects patients’ quality of life and health care spending.
Critics of the concurrent care model worry that it exposes patients to treatments that ultimately can do more harm than good and allows doctors to sidestep difficult discussions with patients that are essential to quality care. “On the oncology and professional level, it is allowing physicians not to confront end-of-life issues [with the patient] in an honest way,” says Don Dizon, an oncologist and medical director at Lifespan Cancer Institute and Rhode Island Hospital, both in Providence. Dizon, who was not part of the VA study or the CMS pilot program, notes that hospice services provided at the appropriate time can ease suffering associated with unnecessary treatment and help patients and families prepare for the difficulties surrounding death.
Cheryl Lopez, who is undergoing treatment for stage IV breast cancer, is grateful that she lives near a hospice that is willing to offer its services to her despite her desire to continue treatment. Lopez, who lives in Lynn, Massachusetts, was first diagnosed with early-stage breast cancer in November 2015 at age 49 and learned she had metastatic breast cancer in 2017.
Since she wasn’t ready to give up active treatment, her oncologist told her about a concurrent treatment model, known as an open access hospice program, through Care Dimensions in Danvers, Massachusetts. Stephanie Patel, the chief medical officer of Care Dimensions, notes that the program isn’t for everyone, and that just eight of the 880 patients who are cared for at the hospice are enrolled in the open access program. “It helps a subset of patients not quite ready to give up their treatment,” says Patel, who notes that her organization works with health insurers to be sure the services are covered.
“Hospice made it clear that they’re only here to help with pain symptoms. They’re not here to fix me,” says Lopez, who receives her active treatment at a nearby hospital. The hospice team has also connected Lopez’s 17-year-old son, sister and parents with counselors.
One potential upside of this approach is that Lopez is now familiar with hospice personnel, who come to her house, in case she later decides to pursue hospice only. But that’s not in her plan: “I appreciate the hospice’s expertise in managing my pain so I can fight to the end.”
Cancer Today magazine is free to cancer patients, survivors and caregivers who live in the U.S. Subscribe here to receive four issues per year.
