As a hospitalist, I've always had a strong interest in improving palliative and end-of-life care. So you can imagine my excitement when on Jan. 31, CEP America rolled out a new palliative care initiative at its client hospitals with integrated emergency/hospitalist medicine programs. Goals of this initiative include:
- Identify ED patients who meet clinical criteria for life-limiting illness
- Initiate respectful, appropriate conversations with these patients and their families about prognosis and available options, including palliative care.
- Create standardized palliative care order sets that can be used even in hospitals with no existing palliative care program.
- Transition admitted palliative care patients to the hospitalist program for ongoing care that meets their goals and wishes.
CEP America is not alone in integrating end-of-life care into its daily practice. A December 2013 story in The Hospitalist covered new palliative care initiatives popping up at practices across the county.
To see palliative medicine receive this level of attention is truly gratifying, as it has only been recognized as a subspecialty since 2008. For many years, I practiced hospital medicine in settings that lacked formal palliative care programs. During that time, I saw many patients spend their last six to 12 months frustrated, confused, and in pain. In many cases, providers avoided palliative care until just a few days before the patient's death, prolonging their physical distress and leaving insufficient time for their emotional and spiritual care.
I found the suffering of these patients and their families difficult to witness. And while cost is always secondary to the patient's well-being, I saw scarce resources wasted on care that didn’t benefit the patient — and may indeed have done harm. I felt something had to change.
In 2005, I decided to seek palliative care training through a local hospice. To this end, I spent my days off from the hospital visiting homebound patients in their last weeks and days of life. I met many fatigued caregivers and patients whose medical and hygienic needs were not being sufficiently met. I felt there was a real need for in-hospital palliative care in our area. So after completing my training, I teamed up with a retired hospice physician, and we started offering hospital-based palliative care for free. "If you know a patient or family in need, call us," we told colleagues.
Then and now, when those calls come, our first priority is to control pain and other disabling symptoms. Once the patient is comfortable and able to communicate, we initiate a conversation with the patient and family about the future direction of care.
One of the big tasks at this point is prognostication, or helping patients understand where they are in their disease process. Too often, patients are left in the dark about their own progress or lack thereof — despite the fact that the medical literature offers many helpful prognostication markers for specific diseases. Using respectful, appropriate conversations, we can help patients understand what to expect in the coming months if the disease follows its expected course. This allows patients to make some important decisions: How much curative treatment do I want? What other options are available? Where and with whom do I want to spend my remaining time?
Palliative medicine providers work with the entire care team to clarify patients' wishes and the goals. For example, a patient with incurable cancer may not wish to spend his last days grappling with the side effects of chemotherapy. In this case, the palliative care team needs to loop the oncologist into the conversation. What are the risks and benefits of continuing curative treatment? Where do we go from here?
Recent positive developments notwithstanding, there remains a very real need in the medical community for culture change and education around end-of-life care. Many providers still find it difficult to cease curative treatment — even when such a shift is clinically indicated and desired by the patient. They may view palliative care as a form of "giving up" or even "hastening death." (Indeed, some colleagues dubbed our early palliative care efforts "the death squad.") Many physicians still believe that palliative medicine means a morphine drip on the last day of life. They've never seen proactive, patient-centered end-of-life care in action.
For the above reasons, it's important that we continue to dispel palliative care myths and educate physicians about its benefits. Providers need to understand how palliative care fits squarely within our Hippocratic Oath and our guiding ethical principles of autonomy, nonmaleficence, beneficence and justice. As a profession, we need to see patients as individuals who deserve choice, respect and dignity at the end of life.
On the upside, palliative care work is extremely fulfilling. It's uplifting to know that while death is inevitable, it doesn't have to be miserable or ugly. And I'm frequently moved by the gratitude of my palliative care patients and their families.
About seven months ago, I cared for a woman who was dying in the ICU. On New Year's Eve, I received a text message from her daughter:
It's a new year starting, and I just wanted to thank you again. You will never know what kind of support you gave me.
Which makes every second spent with that patient worth it.