I have lost count of the number of times I have had patients with advanced cancer who get critically ill with any number of illnesses: infections, blood clots, collapse of lungs, among others. And more often than not, it falls to me, as the critical care medicine doctor, to speak the patient and/or family about goals of care.
Do not get me wrong, I love having these conversations. If I can ascertain my patients’ goals of care, especially at the end of their lives, and mitigate their suffering, it brings me no shortage of happiness.
At the same time, if I am the first physician to have a goals of care conversation, it is really too late. These conversations need to have been done way, way, way before they reach me in the ICU. Unfortunately, however, this does not happen, and the conversation falls to me.
One would think that an Oncologist would know better. Yet, I was shocked – truly shocked – to learn that most Oncologists who have patients with advanced cancer do not refer their patients to Palliative Care. I learned this from a wonderful Substack called PulmCCM.
Their post, “Why don't oncologists refer to palliative care?” discussed how the American Society of Clinical Oncology, it its clinical guidelines about Palliative Care, made a strong recommendation about early referral to Palliative Care:
“Oncology clinicians should refer patients with advanced solid tumors and hematologic malignancies to specialized interdisciplinary palliative care teams that provide outpatient and inpatient care beginning early in the course of the disease, alongside active treatment of their cancer.”
The guidelines stress that Oncologists should not wait to refer patients to Palliative Care, and this recommendation was strong.
The post went on to show how Palliative Care can improve quality of life in cancer patients and even extend life itself:
“In a dozen randomized controlled trials, patients with advanced cancer who were referred to palliative care early had improved quality of life, and often lived longer than patients receiving standard care, which frequently included excessive and harmful chemotherapy and hospitalizations at the end of life.”
Despite this data, most oncologists simply do not refer their patients to Palliative Care, as the post said:
“Few oncologists refer advanced cancer patients to palliative care early. In a surveyed sample cited by ASCO, no oncologists did so—zero. Two-thirds of responding oncologists (68%) said they never refer their patients to palliative care at all, while one-third (32%) referred to hospice only in the expected last month of life.”
That statistic truly shocked me. Zero? No oncologist in their survey referred to palliative care early? How can this be? They cited possible reasons:
“A qualitative analysis of 23 studies of thousands of oncologists’ attitudes worldwide found themes of distrust of palliative care practitioners’ competency; a preference by oncologists to control care; excessive burdens created by incorporating palliative care referrals into a practice, and concerns that care would be terminated early against the oncologist’s advice.”
This is truly a travesty. Everyone deserves to receive care consistent with their values and preferences, especially patients with advanced cancer. The fact that very few, if any, oncologists make early referrals to palliative care, despite a strong recommendation from their own Society, is a huge disservice. This has to change.
I am emphatic about this because of my own experience.
My eldest daughter died from complications of cancer in June 2009. She had diffuse large B-cell lymphoma, and when we started the chemotherapy regimen, I told the oncologist that I wanted my daughter to have quality of life. We, of course, proceeded with chemotherapy, and I would do so again and again. Still, I didn’t want her to be miserable.
Looking back, she was miserable the entire time. Still, it is so important that our patients have goals of care discussions well before those goals of care needed to be addressed. Failure to do so does no one any good.
