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Palliative care: An essential resource in caring for those with advanced illness

Palliative care must be the standard of care for all who have been diagnosed with progressive, advanced, and terminal illnesses. Never should we hear the phrase, “I’m sorry, there’s nothing more I can do,” when physicians encounter the failure of a curative course of therapy.

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I was stopped in the hospital hallway by a colleague who commented, “I’ve got a patient I’d like you to see sometime. But he’s not ready yet.” I replied, “Well, my job is to improve a patient’s quality of life and relieve any symptom burden they may be experiencing. When is someone not ready for that?” Of course, he had a common misconception of what a palliative physician does.

While contemporary palliative medicine has its genesis in the hospice movement, by the late 1990’s it had established itself as a unique medical specialty, providing complex symptom management interventions and skilled communication and navigation options for patients with life-defining illnesses.

In 2006, our specialty was recognized by the American Board of Medical Specialties (ABMS) and our fellowship programs began receiving accreditation through the Accreditation Council for Graduate Medical Education (ACGME). Since then, 7,779 physicians have been certified as hospice and palliative medicine (HPM) specialists. We currently have 198 accredited palliative fellowship programs in the United States. Our providers are employed in a variety of clinical settings:  hospital-based palliative services; outpatient palliative clinics; embedded palliative services in specialty clinics, including oncology and heart failure; long-term care facilities; and home-based palliative programs.

My colleague exposed a common bias among medical providers:  I suspect that it wasn’t the patient who “wasn’t ready,” but rather my colleague who had a difficult time acknowledging that his patient was terminal. We are trained in medical school to find diseases and cure them, immersed in a “fix-it” orientation that understandably generates a sense of failure when we encounter something that is in fact incurable and therefore unfixable.

We don’t want to admit to our patients that we can’t fix them: Telling a patient that they are going to die as a result of their illness is one of the most difficult conversations for a physician to have. So, doctors have a tendency to avoid them. This leads to unrealistic expectations and misplaced hope.

In 2020, Dr. Jennifer Temel and her colleagues at Harvard published a study examining the impact of early palliative consultations for patients with stage 4 lung cancer. While this diagnosis is terminal – there is no cure – there are treatments available that can extend life. All the patients in the study received standard oncologic care; however, those who also participated in a consultation visit with a palliative provider experienced significant benefits:  they had vastly improved quality of life, much less depression, and fewer hospitalizations and emergency room visits. Most remarkably, they lived significantly longer than those who did not receive a palliative consultation. Since this article was published, additional studies by other researchers have affirmed these results.

What does a palliative consultation involve? In the Temel study, the palliative practitioner assessed physical and psychosocial symptoms, established goals of care, assisted with decision making regarding treatment, and coordinated care on the basis of the individual needs of the patient. This approach is standard for a palliative consultation, whether done in the hospital, clinic, or home setting.

Back to the comment I offered to my reluctant colleague:  “When is someone who is living with an advanced (even terminal) illness not ready to have their symptoms relieved, their quality of life and mood improved, and live longer?” It’s obvious:  this is a resource from which all seriously ill patients could benefit.

For any provider uncertain about when to refer to palliative care or recommend the transition to hospice care, there is now technology that aggregates a patient’s complete medical, social and emotional profile using multiple sources of data and identifies whether the patient is in or entering a high utilization period that affects quality of life. Additionally, using artificial intelligence, that technology can prognosticate with incredible accuracy when a patient has 3, 6, 9 or 12 months left to live (barring new treatments for their condition).

There is still work to be done to educate both the medical establishment and the public as to what palliative care is, how it benefits patients, families, and providers, and how to access it.  Seventy-two percent of hospitals in the United States with 50 or more beds reported having a palliative team in 2019, compared to only 7% in 2001. These hospitals serve nearly 90% of all hospitalized patients. We are seeing continued increases in the availability of palliative services, which is necessary and encouraging.

Palliative care must be the standard of care for all who have been diagnosed with progressive, advanced, and terminal illnesses. Never should we hear the phrase, “I’m sorry, there’s nothing more I can do,” when physicians encounter the failure of a curative course of therapy. Rather, we need to engrain the ethic of, “While we no longer have the resources to cure your disease, there’s actually much more we can do to address your situation. With this plan, you will find hope that this next phase of your journey will be filled with purpose, meaning, and comfort.” Then engage the palliative team!

Photo: zhaojiankang, Getty Images

Dr. John Mulder is a pioneering member of the palliative care specialty. Currently, he is chief medical consultant for hospice and palliative care at Holland Home, the largest provider of elder care services in Michigan. He also serves as executive director for the Trillium Institute, which provides education for clinicians on managing serious and terminal illness. Dr. Mulder is director of palliative medicine for the Michigan State University College of Human Medicine, medical director for palliative care at Metro Health, University of Michigan Health, and program director for Mercy Health Grand Rapids palliative medicine fellowship program. He is also a member of the board of directors for the data analytics firm Acclivity Health.

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