How to find palliative care in a small town
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 six 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 six 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, MHA, BSN, RN, CHPN, 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.
Comments
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Palliative care is sometimes available but hidden in small rural hospitals. My pulmonologist in a large teaching hospital in a different state referred me to palliative care in my small local hospital since I can't easily use the services like temporary oxygen, insulin and IV meds provided by the palliative care department in his hospital 100 miles away. There is no palliative care advertised but it turns out that three of the doctors in geriatrics, pain management and physical medicine are also board certified in palliative medicine. The six doctors in these departments are in the same space and have nurses, advanced practitioners and social workers embedded with them. It's very useful when my pulmonologist changes medication causing side effects which need to be managed or I end up in the ER. My PC doctor will balance out everything I take and inform my other doctors of what has been done. At times I have been sent to the wound care and infusion clinics but someone is directing things no matter who is providing.
The social workers have actually been helpful and are not focused on end-of-life care since the local hospice program is a separate entity. They will refer you to counselors on staff or provide telehealth appointments with trained palliative care counselors in the medium sized teaching hospital which they are a satellite of. You can also visit those counselors in person if you want to make the two hour drive. Maybe the affiliation with teaching hospitals is what makes this available but it's worth investigating if it looks like there is nothing local.
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Great advice! Thank you for weighing in, @maggie15!
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