BY SUSAN M. MATHEWS, PH.D.
November is National Hospice and Palliative Care month and a chance to clear up the misunderstanding of what palliative care means and provides. According to the Center to Advance Palliative Care (CAPC), 6 million of the 90 million people suffering with a serious illness in this country could benefit from palliative care services.
However, a great deal of confusion remains about the definition of palliative care, and it continues to be lumped together with hospice. Even with designating this month as one of recognition and education, the fact that Hospice and Palliative Care are again sharing the same byline may perpetuate the confusion. While the hospice benefit was written into law a quarter century ago for those opting out of curative treatment with a life expectancy of six months or less, palliative care is different.
This specialized service delivery system is described by CAPC as “focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.”
Palliative care is not a last resort, and it does not require a terminal diagnosis. The earlier a chronically ill patient opts for it, the better. It is not subject to any timing restrictions. Palliative care is provided to any age group, including to children with life-limiting diagnoses. When the end of life is near, palliative care does not end. It is always a component of hospice care.
In fact, palliative care is all about allowing those with lifelong and life-limiting conditions to be fully present during the many stages of their experience. It provides family support, pain management, as well as emotional and spiritual services. Unique among this medical specialty is a multi-disciplinary team of nurses, chaplains, doctors and social workers actively engaged to provide what is often called an “extra layer of support.”
These palliative care providers help patients maximize life along with mental, emotional and spiritual well-being when a “new normal” is required.
As medicine advances, more patients will need assistance in managing the symptoms and stresses of life-limiting diagnoses that were once considered fatal. Cancer, auto-immune conditions, chronic obstructive pulmonary disease, heart failure, dementia and end-stage renal disease are all examples of chronic illnesses which could be comprehensively managed through palliative care.
The Center to Advance Palliative Care’s Getpalliativecare.org provides a drop-down menu listing available services by state. It also suggests that physicians and nurses find the nearest city and start a telephone consulting relationship when services are not locally available. This practice is becoming more common due to the short supply of palliative care professionals and increasing demand.
In small communities, primary care physicians are frequently the go-to providers. However, too often in primary care, hospice and palliative care are conflated. When asked about palliative care, many physicians respond that the patient is not quite ready for “that” yet; i.e., “they’re not dying.”
Palliative care is not a last resort, and it does not require a terminal diagnosis.
Clearly, the damage is done when the lack of understanding results in misinformation on the part of physicians and patients. The benefits from an extra layer of palliative care services were proven out in a landmark study at Massachusetts General Hospital which showed when comparing aggressive lung cancer patients who received both standard care and palliative care versus standard care only, those receiving palliative care did better in both mood and quality of life than the control group.
Despite the evidence for positive outcomes, referrals for palliative care services still come too late or, in many cases, not at all, said Dr. Andrew Esch, a palliative care specialist and faculty member of the Center to Advance Palliative Care.
“Providers associate palliative care with hospice, and that’s one reason referrals come late,” Esch said. “That’s why we’re trying to clarify that,” he said of CAPC’s mission.
A weak defense for some of these physicians is that they were trained when there was no such field. But healthcare professionals have a moral responsibility to remain current in their field. When they don’t, the lives of millions who are living longer and hoping for the quality of life this medical specialty was designed to better provide are left without critical information.
The old excuse that the physician doesn’t understand is not a good enough reason for patients and families to miss the opportunity to benefit from a constellation of coordinated services that ameliorate the burdens of chronic illness. They need to know that such services work side by side with a patient’s own doctor, so there is no patient transfer to a new physician.
Palliative care is about the “life that is left, and not the end of life.” Teams of palliative professionals are walking the walk with individuals who want to live the lives they have left and who are not even close to their end of life. As long as some medical professionals continue to confuse the end of life with the rest of life, patients and families will suffer unnecessarily. There is no excuse or reason good enough for that.
For full article, please see Palliative Care Is About the Life That’s Left, Not the End of Life – Medscape – Oct 23, 2017.
– Image courtesy WikiMedia Commons