Financing the Care of the Seriously Ill—“Hell No, I Won’t Go” | End of Life | JAMA Health Forum | JAMA Network
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Financing the Care of the Seriously Ill—“Hell No, I Won’t Go”

  • 1School of Medicine, Oregon Health & Science University, Portland
  • 2Brown University School of Public Health, Providence, Rhode Island

Since its inception, the support for funding of hospice and hospital-based palliative care teams has been based on the economic model that assumes that if palliative care services are funded, it will lead not only to improved quality of care, but also will result in money saved. This economic model of spending money to save money is a key premise of the argument for further investment in and expansion of palliative care in the US as well as in Australia.

The fundamental assumption is that increased access to palliative care will result in changes in goals of care and avoidance of futile, expensive terminal hospitalizations. The expansion of coverage of such care results in serving a different population of persons with different preferences, at different points in their disease trajectories, or both. There are 3 Medicare demonstration models that are ongoing or in the planning stages—the Medicare Care Choices Model, the Primary Care First Model, and the Value-Based Insurance Design Model—that aim to evaluate the provision of additional palliative care services prior to hospice. As outlined in the Affordable Care Act, each model is judged by ability “to reduce Medicare, Medicaid or Children’s Health Insurance Program (CHIP) expenditures while maintaining or improving the quality of care for Medicare beneficiaries.”

The ongoing economic evaluations of Medicare efforts to expand access to palliative care services may not save money because of 2 distinct populations that are enrolled in these models. The first population comprising persons with a long length of stay (see Chart 11-3 in the Medicare Payment Advisory Commission report) has been well debated in the medical literature regarding the current Medicare hospice benefit. The second population of concern comprises individuals who are not willing to change their goals of care, who undergo a sudden catastrophic medical event as part or in addition to a terminal illness, or both—factors that result in either not using hospice services or only transitioning to hospice during the last days of life. This latter scenario, based on preliminary data from the Medicare Care Choices Model, reflects the experience of about 1 in 4 dying persons in the model. The expansion of palliative care services to this new population with potentially different preferences, disease trajectories, or both may result in no cost savings or potentially even greater costs. The premise that money can be saved by spending money to provide palliative care to this new population may not hold when considering these 2 populations without policy interventions that limit long length of stays or continue the forced choice of the Medicare hospice benefit.

The following case note is for an elderly patient and illustrates the challenges posed by the population of persons who are not willing to change their goals of care. A 91-year-old male confined to a wheelchair secondary to severe degenerative joint disease with chronic obstructive pulmonary disease, New York Heart Association stage IV chronic heart failure, and multiple ED (emergency department) visits for falls. He refuses nursing home placement. He briefly enrolled in hospice but revoked when it was explained to him that focus of hospice was on comfort and not on extending life. To that, he stated “hell no, I won’t go!” After a fall with multiple rib fractures that resulted in MRSA (methicillin-resistant Staphylococcus aureus pneumonia), the patient lost decision-making capacity and the DPOA (durable power of attorney) elected to stop antibiotics after 48 hours of treatment for MRSA pneumonia based on the belief that treatment was medically futile. He was transferred to an inpatient hospice, where he died within a day.

There were no cost savings with this patient. His DPOA knew and honored his treatment preferences, and when care was futile, transitioned him to inpatient hospice. The DPOA was not forced into a situation of not honoring his preferences. There was comfort in knowing that in his last hours of life, the patient at least received symptom control. His preferences did not follow the model of informing patients about their prognosis and subsequently expecting changes in preferences to focus solely on comfort rather than trying to continue medical treatment of their multiple chronic illnesses.

How should Medicare craft policy to deal with this population of individuals who will never transition to the Medicare hospice benefit in a timely manner? Dying is a sentinel family event. Dying that is marred by out-of-control symptoms and family not being able to say goodbye affects not only the dying person, but his or her family. As Dame Cicely Saunders, the founder of the modern hospice movement, so eloquently stated,1 “How people die remains in the memory of those who live on.” Obviously, costs are an important policy concern and the results from the ongoing demonstration models will be important to review. But the policy debate must not ignore the important needs of persons whose preferences preclude accepting the forced choice of the Medicare hospice benefit and its requirement that that a patient must opt out of customary treatment for his or her terminal illness or illnesses. The cancer dying trajectory of the 1980s that informed the creation of the Medicare hospice benefit no longer holds, with the disease trajectories of breast cancer and many other cancers more akin to chronic illness than a dying trajectory based on treatment failure.

It is time that a payment model is defined based on this new and evolving cancer disease trajectory and the known concerns of noncancer diagnoses fitting the hospice model. And while doing so, the needs of persons who do not want to make the forced choice of giving up customary treatment for their terminal illness must be addressed.

Continuing to try to force a square peg into a round hole is not going to work. Value is based on cost and quality, and while the goal of cost efficiency should not be abandoned or futile care provided, the concerns of these dying persons and their families should not be ignored. For seriously ill persons at risk of dying—the relatively small proportion of patients who have a serious illness with expected high costs, given the uncertainties of prognosis—cost neutrality should be based on a larger population perspective, such as in financing of Medicare Advantage plans, rather than testing models to achieve cost neutrality in only persons who are seriously ill.

Article Information

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Teno JM et al. JAMA Health Forum.

Corresponding Author: Joan M. Teno, MD, MS, Oregon Health & Sciences University, 3181 SW Sam Jackson Park Rd, Portland, OR 97239 (

Conflict of Interest Disclosures: Drs Teno and Gozalo were contracted, which ended in 2020, by Abt Associates to work on the Evaluation of the Medicare Care Choices Model report. Dr Gozalo reported receiving grants from the National Institute on Aging and serving as a part-time employee of the Veterans Health Administration. No other disclosures were reported.

Disclaimer: The views expressed in this post are those of the authors and do not represent the views or policies of Abt Associates or the US Department of Health and Human Services. The mention of trade names, commercial products, or organizations does not imply endorsement by the US government.

Additional Information: The elderly patient mentioned in the case note was Dr Teno’s late father. Dr Teno was her father’s designated durable power of attorney.

Wall  P, Melzack  R.  Textbook of Pain. 2nd ed. Churchill Livingstone; 1989.
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