If You Don't Know to Ask for Palliative Care, Will the Doctor Offer It to Your Loved One?

A surgeon in scrubs and mask in the operating room

On August 8, 2019, the Center to Advance Palliative Care (CAPC) held a webinar which explored changes in awareness, perceptions, and attitudes towards palliative care among adults, patients with a serious illness, caregivers, and physicians. In 2011, CAPC conducted a national phone survey of adults. They repeated this survey in 2019 and added two national online surveys – one with seriously ill patients and caregivers, and one with physicians treating patients with serious illnesses.

The survey found that a top concern among patients and caregivers is that doctors may not provide them with all the treatment options available. Patients and families also worry that they don't have enough control over treatment options. It seems like these concerns may be valid.

Cardiologists and Primary Care Physicians Are Less Comfortable with Palliative Care than Other Specialists

CAPC broke down the physician findings by specialty and segmented responses by non-PCP specialists, oncologists, cardiologists, and primary care doctors. Key findings included the following:

  • Cardiologists were the least likely to refer patients to palliative care (63%) compared to 70% of primary care physicians, 81% of non-PCP specialists, and 86% of oncologists.

  • Only half of the cardiologists responding to the survey (51%) were comfortable talking with patients and their families about palliative care compared to 63% of primary care physicians, 70% of non-PCP specialists, and 77% of oncologists.

  • Less than half of cardiologists responding to the survey (48%) were comfortable determining when their patients needed palliative care compared to 57% of primary care physicians, 66% of non-PCP specialists, and 81% of oncologists.

Given the patient population that oncologists treat, it's not surprising that this specialty was the most comfortable with palliative care. I found it interesting that both cardiologists and primary care physicians were the least comfortable with discussing and referring patients to palliative care. This is consistent with the experience I had with my Dad and his heart disease.

The CAPC research identified various barriers that prevent physicians from referring appropriate patients to palliative care. Some are simply not comfortable talking to patients and families about this option. Others view palliative care as only end of life care. In some cases, physicians don’t understand what palliative care options exist for patients. In others, adequate palliative care services and practitioners aren't available.

What Are Caregivers and Patients to Do?

As CAPC noted during the webinar, clinicians are the gatekeepers to palliative care. If your family member's primary care doctor or specialist falls into the camp of being uncomfortable talking about palliative care, what can be done?

Patients and families who are familiar with palliative care certainly have a leg-up and can proactively raise the topic with healthcare providers. When my Mom broke five ribs, I had to really push the doctors at the hospital to connect us to the palliative care team. It was not an easy ask.

For those who don't know about palliative care, however, it's hard to "know what you don't know." This unfortunately leaves people in the very situation they fear – not understanding all the treatment options that are available to them.

As the American population ages, the medical community needs to get more fluent in the language of palliative care and more open to discussing it. I'd suggest that organizations like the American College of Cardiology and American Academy of Family Physicians should examine why their specialties shy away from this option and implement education to break down the barriers around this important option.

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