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Making the Right Care Available When it Matters Most

Several years ago, a friend of mine was diagnosed with an aggressive cancer at a very young age. Treatment options were uncertain and sometimes experimental. He and his family were lucky and were enrolled in a high-quality palliative care program that addressed not just his pain and symptoms, but also helped his family make choices about care in the future, supported his wife in her new role as a caregiver, connected them to resources at the hospital and beyond that could work with them as the disease progressed, and most importantly for him, helped his young daughter come to terms with what his illness could mean for her.

Palliative care can be a tough concept to get your head around. The first thing that comes to mind when someone mentions palliative care is probably hospice – end of life support designed to address the pain and symptoms of a terminally ill patient. While hospice is part of palliative care, palliative care is much broader and addresses the pain, symptoms, and emotional and spiritual needs of anyone dealing with severe or life limiting illness. The goal is to improve the quality of life for both the patient and the family at any stage in a serious illness, not just before immediate end of life hospice care.

Palliative care can be appropriate for anyone dealing with a serious, life-threatening illness. It’s especially important for patients that are trying to manage a long term serious disease, like heart failure or COPD. Both of those conditions involve long term illness management with care planning for the future and symptom and pain management for periods of disease exacerbation. Palliative care can also help round out medical treatments to provide true whole person care that addresses emotional, spiritual, and family needs. It turns out that when patients are allowed to tailor their care to their personal values and beliefs it improves the lives of the patient and the caregivers, reduces stress, improves satisfaction with care and reduces costs. Basically, palliative care is a Triple Aim slam-dunk, making it an ideal area for CIVHC to tackle.

As part of our work to promote quality palliative care in Colorado, CIVHC facilitates a task force that works together to make real changes in the care people have access to when they are seriously ill. In line with the recommendations from that group, CIVHC commissioned Hospice Analytics to replicate a 2008 study of palliative care providers across Colorado. By polling both hospital-based (inpatient) and hospice –based (outpatient) palliative care programs, the study sought to discover where and how palliative care services were being provided in the state.

  • How many hospitals and hospices were providing it?
  • What were they providing?
  • How important was palliative care to the work they were doing?

CIVHC recently got the results of the survey and there’s good news… and bad news.

Hospital-Based Palliative Care Programs

In hospital-based programs, there was no growth in the number of facilities providing palliative care, yet the number of palliative care consults provided at those hospitals jumped by almost 500 percent.

Looking at those numbers, it seems that while the idea of providing inpatient palliative care is not spreading to new facilities, the hospitals that have been using palliative care are finding value in it and are significantly increasing the frequency of palliative care provision.

Hospice Based Palliative Care Programs

In hospice-based palliative care programs, there was a notable increase in the number of facilities offering palliative care. Yet, despite the increase, only a third of the hospices in Colorado offer palliative care services. 

Lack of Reimbursement and Staffing

The low numbers of service providers may be explained in part by the limited reimbursement opportunities for palliative care. While facilities can receive reimbursement for physician and nurse time, payments from health plans generally don’t cover the costs involved in providing effective team-based palliative care services including social workers, chaplains, and pharmacists. Since the completion of the survey, CIVHC has learned that at least three different outpatient palliative care providers have closed due to the resource challenges involved.

The number of hospital staff dedicated to palliative care provision varied widely and those using undedicated staff tended to rely on very part time employees (10-20 hours per week) to fulfill patients’ palliative care needs. Hospices had higher percentages of dedicated physicians, but fewer dedicated and undedicated non-physician caregivers. Again, many of the trends in palliative care staffing may be explained by the difficulty in getting reimbursement for anything other than professional services from an MD, RN or APN.

Overall, there are some encouraging trends: over 85 percent of hospitals reported having at least one nurse or physician certified in Hospice and Palliative Care, up from only 43 percent in 2008. Of the hospitals and hospices combined, only four facilities didn’t have palliative care available Monday through Friday or 24 hours a day. The increase in availability of the service is reflected in the increased consults that we are seeing across the state.

Next Steps for Colorado

The new survey highlights the wonderful work being done across the state, but also exposes the areas that need the most attention.

  • Consistent and sufficient reimbursement for team-based palliative care provision would go a long way towards improving access across the state.
  • Reimbursement for palliative care services would also encourage the expansion of existing programs and the development of new programs to serve rural parts of the state.

The map of service providers below shows how urban-centric palliative care is in our state. If we are going to succeed at making palliative care a regular part of care-giving and use it to improve patients’ lives and decrease costs, we have to make sure that it is available to everyone who could benefit from it.

About the Author: Kristin Paulson is CIVHC's Director of Health Care Programs. Contact her at kpaulson@civhc.org.

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