Some croon, "Everyone wants to go to Heaven, but nobody wants to die." As a general rule, Americans not only don't want to die, we also don't want to talk about death and dying. As a consequence of this reticence, many Americans are dying without the benefits of hospice care.
In an attempt to grapple with this problem, the Affordable Care Act authorized a pilot project, now called the Medicare Care Choices Model (Model). The goal of the Model is laudable, but given its design, not likely to achieve success, and may possibly cause confusion and even harm.
Hospice is care for the dying. It is palliative care, which means it is patient and family-centered, and optimizes quality of life by anticipating, preventing, and treating suffering. Good hospice care addresses physical, intellectual, emotional, social and spiritual needs, and facilitates autonomy.
Since 1983, Medicare has paid for hospice care and it now pays for most hospice care received in the United States. Beneficiaries are eligible for hospice care when they are certified by a physician as having a life-expectancy of six months or less if the illness runs its normal course. There is no durational limit on hospice. However, in the United States, the average length of hospice care is less than 60 days, and the median length of care is only 26 days, with 30% of those who elect hospice care dying in 7 days or less. In other words, Medicare beneficiaries are not getting enough hospice care. Some believe that this is because when a beneficiary elects the hospice benefit, Medicare will no longer pay for curative care related to the terminal illness.
In an effort to address this problem, The Affordable Care Act of 2010 directed the Secretary of Health and Human Services (Secretary) to establish a three-year Medicare Hospice Concurrent Care demonstration project which would allow patients otherwise eligible for hospice care to also receive all other Medicare covered services while receiving hospice care. The hospice providers selected for the project are supposed to undergo an "independent evaluation" regarding patient care, quality of life, and spending in the Medicare program. The Secretary is directed to ensure that the aggregate Medicare expenditures for the three-year period shall not exceed what should have been the aggregate expenditures if the demonstration project had not been implemented. According to Senate Finance Committee Chairman Ron Wyden (D-Ore), who wrote the provision into the Affordable Care Act, "Patients and their families should have every choice available to them when faced with a life-threatening illness. Allowing Medicare coverage to continue while under hospice care means that patients no longer have to make a false choice between hospice and curative care."
Medicare Care Choices Model
On March 18, 2014, the Centers for Medicare & Medicaid Services, (CMS) the agency that administers Medicare, posted a request for applications to improve care options for Medicare hospice eligible beneficiaries. According to the request, CMS will select at least 30 rural and urban Medicare certified hospices that have "demonstrated experience with an established network of providers for referrals to hospice." It will limit beneficiary participation to those who have "not elected the Medicare hospice benefit within the last 30 days prior to participating in the model" and have a diagnosis of advanced cancer, chronic obstructive pulmonary disease, congestive heart failure, or HIV/AIDS. The goal of the demonstration project is to see "whether Medicare beneficiaries who qualify for coverage under the Medicare hospice benefit would elect to receive the palliative and supportive care typically provided by a hospice if they could continue to seek services from their curative care providers."
1. Confusion About the Law
In its request for applications for the pilot program, CMS states, "Through the Medicare Care Choices Model, the Centers for Medicare & Medicaid Services (CMS) will provide a new option for Medicare beneficiaries to receive palliative services from certain hospice providers while concurrently receiving services provided by their curative care providers."
This description is confusing. It seems to indicate that currently Medicare beneficiaries who elect the hospice benefit cannot receive curative care. This is false. The Medicare hospice benefit is diagnosis specific. When Medicare beneficiaries elect the hospice benefit they waive Medicare coverage for curative treatment only for their terminal illness. Medicare continues to pay for all care that is not related to the terminal illness. For instance, if a Medicare beneficiary with diabetes and high blood pressure elects hospice care because she is diagnosed with terminal liver cancer, Medicare will not pay for curative care for the terminal liver cancer, but will continue to pay for all care (including curative) related to her diabetes and high blood pressure, and all other diagnoses.
In order to clear up this confusion, CMS should describe the program as follows:
Through the Medicare Care Choices Model, Medicare beneficiaries certified as having a life expectancy of six months or less if the illness runs its normal course will have the option of receiving palliative care for the terminal illness from certain hospice providers while concurrently receiving non-palliative treatment for the terminal illness from other Medicare certified providers.
This will make it clear that unlike everyone else in Medicare who has elected the hospice benefit, those participating in the pilot project will be able to get Medicare covered non-palliative treatment for their terminal illness.
2. Confusion About Treatment Goals
A. The Term Curative
In its description of the Model, CMS states "This Model will test whether Medicare beneficiaries who qualify for coverage under the Medicare hospice benefit would elect to receive the palliative and supportive services typically provided by a hospice if they could continue to seek services from their curative care providers."
Webster's Dictionary defines curative as "of or relating to the cure of disease." Reading the description of the Model literally seems to indicate that those beneficiaries who receive care from the hospices participating in the pilot will be able to get hospice care while concurrently receiving treatment that will cure their illness. However, given the selected disease categories for the study, advanced cancers, chronic obstructive pulmonary disease, congestive heart failure and HIV/AIDs, it is very unlikely that any treatment will cure the terminal illness. So it seems that in using the word "curative," CMS really means that it will continue to pay for treatment that might extend the life of a person living with a terminal illness. For instance, there is currently no cure for people living with Stage 4 lung cancer; however, there is chemotherapy that might prolong a patient's life. The Medicare Care Choices Model, therefore, might allow someone with end-stage lung cancer to receive hospice care while simultaneously receiving chemotherapy that will not cure her cancer, but might lengthen her life.
It is very important that this potential ability of oncologists and other physicians to continue to provide and receive payment for "curative" treatment for patients on hospice not cloud their duty to ensure that their patients are making fully informed healthcare decisions. Research indicates that oncologists currently do a poor job at fully explaining treatment goals to patients with advanced cancer. For instance, in a 2012 study published in the New England Journal of Medicine, researchers found that 69% of patients with terminal lung cancer and 81% of those with terminal colorectal cancer who continued to receive chemotherapy did not understand that the treatment was unlikely to cure their cancer. This is important, because if patients believe that a treatment will cure them, they may be willing to suffer that treatment's side-effects. However, if they understood that the research only showed the treatment might extend their lives for a few months, the same patients might choose to forego the treatment and pursue only care that improves quality of life.
In fact, research shows that Medicare beneficiaries with terminal congestive heart failure, lung cancer, pancreatic cancer and colon cancer who elect hospice usually live longer than those who continue to pursue "curative" treatment and that for all other terminal diagnoses, there is no evidence that those who elect hospice have shorter survival times than those who continue to pursue "curative" treatment.
So the problem with the Medicare Care Choices Model's use of the word "curative" is two-fold. For most lay-people, the phrase curative treatment means the treatment will cure the terminal illness. In this context, however, it really means treatment that might extend a person's life. So rather than use the word curative, the Model should use the phrase, non-palliative treatment. This is because continuing to use the word "curative" will undermine the most basic tenants of hospice care, helping patients to live fully, meaningfully, and in comfort as they and their loved ones prepare for death. If the patient and her family still believe that the patient will survive her illness, that is be cured, then she may undergo treatments that cause great discomfort and keep her away from her family. Receiving hospice care in this context will be of little value.
To avoid mixed messages, it will be very important that the Model design ensure that hospice and "curative" treatment providers spend the time necessary to encourage patients to articulate their treatment goals (for instance, what's more important, quality of life or length of life?) and to educate their patients about the limits of the potentially life extending treatment offered, the toxic effects of the treatment, and the fact that many patients live longer and more comfortably on hospice care when they forego all "curative" treatment. To do otherwise, is to offer false hope, to increase likelihood of suffering, and to take away the patient's right to self-determination.
3. Wrong Diagnoses
A. Ongoing Curative Treatment May Hasten Death
CMS has limited the Medicare Care Choices Model to beneficiaries with advanced cancers, chronic obstructive pulmonary disease, congestive heart failure and HIV/AIDs. Ironically, for some of these diseases, including congestive heart failure and advanced lung, pancreatic, and colon cancer, the research indicates that patients live longer if they forego "curative" treatment and have hospice care only. The research found no difference in survival time for patients with terminal breast or prostate cancer whether they elected hospice or continued to pursue "curative" treatment. So encouraging ongoing treatment may in fact not be in the best interest of many beneficiaries with the selected diagnoses.
B. More Time on Hospice Rather Than More Treatment
On the other hand, there are Medicare beneficiaries who could benefit from a more expanded hospice benefit. Those with end stage chronic obstructive pulmonary disease (COPD), one of the selected disease groups, could definitely benefit. However, what they need is not access to curative treatment while they are receiving hospice care, but a more flexible hospice benefit. This is because it is difficult to predict the trajectory of COPD and thus difficult for doctors to say with reasonable certainty that a patient will die within six months if the illness runs its normal course. This is also true for people living with Alzheimer's Disease and other dementias. Many more people living with these diseases and their loved ones would benefit from hospice care if it was extended to people for whom there was a life expectancy of a year or less if the illness ran its normal course. Thus the Medicare Care Choices Model would be greatly improved if rather than focusing on more treatment for the terminally ill, extended hospice eligibility to beneficiaries with a life expectancy of one year or less if the illness ran its normal course.
C. Forgotten Diagnoses
Alzheimer's Disease and other dementias should be diagnoses included in the pilot study. Also End Stage Renal Disease (ESRD) should be included. ESRD is a complicated and progressive disease. People living with the disease are literally kept alive by dialysis. If they stop dialysis, they will die. The payment structure of the Medicare hospice benefit is designed such that beneficiaries living with ESRD cannot access hospice care until they give up dialysis. When they give up dialysis, they will die imminently, so most Medicare beneficiaries with ESRD get no or very little hospice care. Due to the burden of their disease and the benefit of ongoing treatment they could clearly benefit from inclusion in the pilot study.
Though the goal of the Medicare Care Choices Model – increased access to hospice care – is a good one, its design is flawed. To fix the problems, we suggest the following:
1. The Model's description should read:
Through the Medicare Care Choices Model, Medicare beneficiaries certified as having a life expectancy of one year or less if the illness runs its normal course will have the option of receiving palliative care for the terminal illness from certain hospice providers while concurrently receiving non-palliative treatment for the terminal illness from other Medicare certified providers.
2. To avoid mixed messages and confusion about the goals of treatment, the Model should not use the phrase "curative treatment," but rather "non-palliative treatment."
3. Requirements should be added to the Model to ensure that the hospice and non-hospice providers work with patients to help them articulate their treatment goals and to ensure compliance with their treatment goals.
4. Requirements should be added to the Model to ensure that hospice and non-hospice providers educate their patients fully about the possible benefits of non-palliative treatment and the risks associated with the treatment.
5. Due to the difficulty of predicting the trajectory of non-cancer diagnoses, the Model should include beneficiaries who have been certified as having a life-expectancy of one year or less if the illness runs its normal course.
6. ESRD and dementia should be added to the list of the Model's included diagnoses.
With these changes, the Medicare Care Choices Model may provide choice and ensure self-determination, while at the same time increasing access to hospice care.
 In 2012, 83.7% of hospice care was covered by the Medicare Hospice Benefit. NHPCO Facts and Figures on Hospice, http://www.nhpco.org/sites/default/files/public/Statistics_Research/2013_Facts_Figures.pdf
 Teno, JM, et al. Timing of Referral to Hospice and Quality of Care: Length of Stay and Bereaved Family Members' Perceptions of the Timing of Hospice Referal. J. Pain Symptom Management 2007; 34: 120-125.
 PPACA Pub. L. No. 111-148, § 3140
"CMS will try Offering hospice patients both palliative, curative treatments," Jessica Zigmond, Modern Healthcare, Published March 18, 2014, http://www.modernhealthcare.com/article/20140318/NEWS/303189949
 Weeks, Jane C., et al., Patients' Expectations about Effects of Chemotherapy for Advanced Cancer, N. Engl J Med 2012; 367: 1616-1625.
 Connor, Stephen R., et. Al., Comparing Hospice and Nonhospice Patient Survivial Among Patients Who Die Within a Three-Year Window, J. Pain Symptom Management 2007; 33: 238-246.
 Connor, Stephen R., et. Al., Comparing Hospice and Nonhospice Patient Survivial Among Patients Who Die Within a Three-Year Window, J. Pain Symptom Management 2007; 33: 238-246