RESOURCES

Reality of Palliative Care

In the past physicians have been reluctant to refer patients for palliative care because it meant the end of cancer treatment and a loss of patients’ hope; for some it might be considered a professional failure. So, there is a stigma attached to palliative care.

Many families still equate palliative care with hospice and end-of-life and, therefore, do not understand how palliative care can be of help to their loved ones. Others do not know that palliative care programs exist and are available to patients and their families. Compounding the problem, many medical and healthcare professionals are themselves unprepared and uncomfortable initiating a discussion about palliative care with patients.

Hospitals

Palliative care does have a presence in a number of large hospitals in this country but it usually entails services for patients who are transitioning from a hospital stay to home care, skilled nursing or long-term care facilities. The hospital team may be comprised of: a pain management specialist, nurse, pharmacist, social worker, dietician, and respiratory, occupational and physical therapists.

Once the patient leaves the hospital, there may be no further contact between the hospital and the patient within the scope of palliative care. If there is a cancer center attached to the hospital and the patient is being treated through that program, some palliative care services may be provided. Palliative care should be an ongoing approach to care, not just a hospital-based intervention.

DID YOU KNOW?

Illinois and 32 other states have passed the CARE Act (Caregiver Advise, Record, Enable). It has three main provisions. It requires a hospital or rehab facility to record the name of the caregiver when a patient is admitted and that the caregiver be notified when their loved is to be discharged or moved to another facility; and requires hospitals and facilities to explain and provide instruction about any medical tasks that the caregiver will need to provide at home, including medication management and wound care.

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Oncology Practice

Cancer treatment provided by oncology practices do not offer palliative care. They provide pain management directly related to treatment; but at a certain point, cancer patients with significant pain and an increasing need of pain medications cannot be adequately relieved of that symptom burden with standard doses of routinely prescribed pain medications. It is then that the oncologist may present palliative care and its pain management component as an option for the patient. Studies have shown that the earlier a partnership between palliative care and oncology is established the better a patient’s pain is managed and reduced.

Nonprofit Palliative Care Providers

To help fill the gap in care, there are specialized organizations that provide palliative care programs outside of the hospital setting. These nonprofits primarily emphasize their hospice programs and services but do have palliative care programs available, focusing on pain management. Patients and their families enrolled in these programs can still receive their curative treatments and even participate in clinical trials and research studies. Again, hospice programs and services abound for patients and their families but their offerings are just beginning to trickle down to those caregivers who have loved ones in palliative care.

Current palliative care providers offer some services and support programs outside of the medical protocol but as the needs of patients and caregivers change, this specialty must be willing and able to adapt to those changing needs and not be afraid to develop and practice new ways of helping patients, caregivers and families.

More and more terminal patients are having their lives extended due to advances in medical treatments and drugs. But they want quality of life, not just quantity. A spotlight needs to be shown on palliative care and the services it provides.

DID YOU KNOW?

Most insurance covers palliative care, although that term is never used. Medicare and Medicaid cover many costs but palliative care is never mentioned. Rather, coverage is provided under long-term care or home-care categories of service.

Insurance companies and Medicare/Medicaid pay for individual services, not an overall benefit. That fee-for-service model was being changed through the ACA (Affordable Care Act) or “Obamacare” to alternative payment systems tied to improving the quality of care and controlling costs.

It is uncertain what model will be established by the current administration.