Living Well with Serious Illness

Living Well with Serious Illness

By Francine Arneson, M.D. and Kyle Arneson, M.D., Ph.D.
 
When patients and their families are asked to meet with palliative care specialists, it commonly triggers a wide range of emotions. Some may feel uncertainty about having an additional care team involved when they already have multiple appointments, and many fear what the referral may mean in regards to their current treatment plan and ultimately to their life trajectory. 

Along with these complicated emotions, patients and their families often admit to being unsure why their doctors feel the need to involve palliative care. By contrast, when a patient is referred to a cardiologist, oncologist, or surgeon they tend to understand why. The concept of palliative care has been utilized for decades by many clinicians but has only recently evolved into its own specialty. Recognized through research and clinical trials, palliative care has shown to help patients live well with serious illness by enhancing quality of life, extending prognosis, and ensuring patient centric care and comfort.

Palliative care is delivered alongside best standard medical care by an interdisciplinary team, consisting of doctors, nurses, social workers, chaplains, pharmacists, and others to meet the multidimensional needs of individuals. Ensuring that medical decisions align with the patient’s personal values and enhancing the patient’s quality of life remain the focus of specialty palliative care. Palliative care also aims at minimizing suffering.
Suffering is a scary word, but most people facing a difficult diagnosis will experience some element of suffering. Many first think of suffering as physical distress such as pain or shortness of breath. However, in palliative care, a much broader view of suffering is taken. It includes not only physical symptoms but also the emotional, spiritual, and practical toll illness places on our sense of self and our loved ones.  

Palliative care commonly addresses suffering in those who are not having physical symptoms, but have anxiety or depression, overwhelming feelings of guilt, remorse, fear, or discord regarding faith. Palliative care will discuss how illness impacts a person’s independence and appearance and focuses on how illness impacts relationships with loved ones. Palliative care provides that extra layer of support to ensure that all medical care is based upon individual choices and values.

As we attempt to maintain a sense of self through complicated illness, these topics are vitally important but are rarely addressed in normal health care settings. Specialty palliative care strives to ensure that the medical plan of care is based on diagnosis but is also optimized to incorporate the patient’s personal values and beliefs, based on goals and life experiences.

So, although many people are initially hesitant when a palliative care referral has been made, ultimately most people deeply appreciate the benefit of excellent symptom management and the patient centric support that is provided throughout a relationship with the palliative care team.
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Francine Arneson, M.D. and Kyle Arneson, M.D., Ph.D. are contributing Prairie Doc® columnists. They practice palliative medicine and radiation oncology, respectively, in Sioux Falls, South Dakota. Francine is the featured guest on the show this week. For free and easy access to the entire Prairie Doc® library, visit www.prairiedoc.org and follow Prairie Doc® on Facebook featuring On Call with the Prairie Doc® a medical Q&A show streaming on Facebook and broadcast on SDPB most Thursdays at 7 p.m. central.