Palliative care: Little understood, but life-changing for those who need it

The role of palliative care is often misunderstood, just like the word itself isn’t one people fully comprehend when they first hear it, often confusing it with hospice. 

In reality, very few of us are untouched by the need for this care, often with an aging parent, perhaps a friend dealing with illness, or we might even need it ourselves. Many South Dakotans benefit from palliative care as they go about their daily lives, remaining as active as is reasonably possible while coping with difficult circumstances. These folks deserve comfort, care and dignity and to have it without incurring great expense and the debt that often comes with it. 

Palliative care is focused on providing relief from the symptoms and stress of serious illness, such as cancer, with the goal of improving quality of life for both the patient and family. Palliative care is delivered by a specially trained team of doctors, nurses, social workers and chaplains who provide an extra layer of support to anyone with a serious illness wherever they receive care, no matter their prognosis. It is provided alongside curative treatment and is based on what matters most to the patient. Easily accessible palliative care is largely not available for many South Dakota residents, specifically for many located in rural settings.

Even in areas with relatively good access to palliative care, gaps remain, especially for home-based palliative care provided by an interdisciplinary team. Reimbursement for palliative care is generally restricted to physicians and advanced practice providers, limiting organizations’ ability to provide a specially trained interdisciplinary team, but this team is critical to support the patient and caregivers. They address not only physical symptoms, but also psychosocial, emotional and spiritual stressors of serious illness. This interdisciplinary care not only improves the patient’s daily life enjoyment, but also frequently reduces the cost of care for health systems and payers. In short, it improves health and financial outcomes and should be forefront on the agenda for anybody who wants a healthier South Dakota.

With that in mind, last month South Dakota Association of Healthcare Organizations (SDAHO), alongside a palliative care provider from South Dakota, joined a group of advocates from the American Cancer Society Cancer Action Network in Washington, D.C., to attend a meeting of the Patient Quality of Life Coalition to let our South Dakota congressional delegation know about the need for better access to palliative care.

It was in support of the federal Palliative Care and Hospice Education and Training Act (PCHETA), a bipartisan bill that aims to tackle some of the current obstacles preventing many patients from accessing palliative care, chiefly availability of practitioners. PCHETA’s goals largely center on improved training and education around palliative care, attempting to bolster resources available but also to help people understand why palliative care matters. This federal legislation could have a big impact in our state. PCHETA’s goals resonate strongly in my life and with many folks I work with every day in my role as Hospice and Palliative Care Program manager for SDAHO. 

As an advanced hospice and palliative care certified social worker, I have had the privilege to support patients and families on their journey living with serious illness. As a person living with a serious illness myself, I have also experienced the benefits of receiving palliative care. Ensuring all South Dakotans have access to palliative care is both professionally and personally crucial to me.

Palliative care plays a crucial role in the lives of many, and getting the infrastructure in place to make sure it serves our family, friends and neighbors well in the future is important business. This legislation can help increase access to these critical services that should not be limited to urban or hospital-based care, as they often are now. For lawmakers concerned about increasing health care costs, PCHETA also promises to be a prudent investment.

During the 2024 South Dakota legislative session, a definition of palliative care was formally added to state law. It was a small but crucial step in helping people receive the care they need, where they need it. The definition starts the process of establishing the structure needed for the reimbursement of the entire interdisciplinary team.

There is much work ahead and I look forward to partnering with many in South Dakota on setting a strong foundation in place so that palliative care is available to all who need it. I also want to thank Sen. Mike Rounds for sponsoring PCHETA and ask Sen. John Thune to consider signing on as a sponsor, putting needed federal emphasis and resources toward improving the lives of South Dakotans who badly need these services.

Palliative care isn’t always easy to understand, but for those living with serious illness, it can be life-changing. For a complicated and overburdened health care system, it can reduce hospital stays and care costs. For those who want to improve health care outcomes in South Dakota, it must be part of the solution.