Q: I’m in a small town in Texas, and there just doesn't seem to be much out there when I inquire about “ongoing palliative care.” Is it a big medical facility offering? Is it not well-funded so no one is interested? I’m not talking hospice, I'm talking palliative. So many of us could benefit from the added care for our discomforts and pain, yet we must dig for anyone who will even hire someone to provide the service. Apparently, my large medical system has a fledgling organization if I am willing to drive 60 miles to their flagship facility. What can I do?
A: I share your frustration about the limited access to palliative care services. There are many benefits to receiving palliative care services further upstream from hospice care. Palliative care services began in the hospital setting; however, with the growth in the number of seriously ill individuals, these services are expanding to the community setting. A variety of sources provide these services, including health systems, medical groups, home health, and hospice agencies. The challenge for providers attempting to meet the increasing need is the lack of adequate reimbursement. The challenge for consumers is the lack of regulation to define and provide guard rails for palliative care services.
Definition: Palliative care is patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs to facilitate patient autonomy, access to information, and choice.
Comparison to hospice: Hospice is a Medicare and Medicaid benefit that serves terminally ill beneficiaries with interventions focused on symptom management, emotional, psychosocial, and spiritual support by an interdisciplinary team, including trained volunteers. (Most commercial insurance plans also cover hospice services). The benefit covers medications and durable medical equipment related to the terminal disease and bereavement services for loved ones for up to 13 months after death. Beneficiaries must have a life expectancy of less than 6 months if the disease runs its natural course. Beneficiaries agree to forgo life-prolonging treatments related to the terminal disease.
Palliative care is not currently a Medicare or Medicaid benefit, except for California’s Medi-Cal benefit (SB 1004). Palliative care can be provided concurrently with life-prolonging care and does not require a prognosis of less than 6 months to live. The billable component of palliative care is the provider (physician or nurse practitioner) visits, which are subject to applicable co-pays. Some managed care plans contract with palliative care programs and reimburse on a per-beneficiary per-month basis, which allows some flexibility in the palliative care services provided and typically does not include co-pays.
Palliative care services
Because there is no regulation for palliative care services and limited reimbursement, you will find wide variation in the services provided from program to program. However, most programs provide some key services, including assistance with advance care planning and goals of care, symptom and medication management, emotional/psycho-social/spiritual support, and care coordination. Some providers are using telehealth and virtual visits for rural areas to increase access to palliative care services. You can ask the large health system if virtual access to palliative care services is available as an option.
Finding a provider
You can use the NHPCO Find a Provider Map or the Get Palliative Care provider directory to see if there are other palliative care services in your area. I would also encourage you to write your members of congress to let them know you want access to community-based palliative care services. Finally, I hope you will find a solution closer to home to meet your needs. All seriously ill individuals deserve access to palliative care services.
Lori Bishop, M.H.A., B.S.N., R.N., C.H.P.N., is a healthcare nurse executive focused on innovative and transformational interdisciplinary care delivery models for the vulnerable seriously ill population. Lori has an extensive clinical background in hospice and palliative care. Her current position is vice president of palliative and advanced care at the National Hospice and Palliative Care Organization.