By Helen McNeal, Executive Director, California State University Shiley Institute for Palliative Care
It is estimated that 1.5 to 1.6 million patients in the United States received hospice or palliative care services in 2012. Anecdotal accounts indicate that many more who would benefit by this care did not have access to it or had to wait so long that services were provided only during their final few days of life.
Considering that 90 percent of American adults live with a chronic illness before they die, this is an important issue. While some manage well on their own with minimal assistance from healthcare professionals and/or friends and family, others may need more hands-on care and supervision, particularly as their disease burden becomes heavier. We cannot forget that as the population ages, more people with multiple illnesses or conditions will require more supportive care.
Doctors, nurses, social workers, chaplains, and allied health professionals play a vital role in educating the public about palliative care and the fact that it is much more than just hospice. Sharing the same philosophy and patient and family-centric approach, palliative care is the broader umbrella of care for those with a serious or chronic illness and goes hand-in-hand with curative treatment. Palliative care is care that may be given while someone is receiving treatment that they hope will either cure them of their illness or prolong their life. Hospice on the other hand is the intensive end-of-life care offered to patients who are projected to have less than six months to live and who have elected to discontinue curative treatment.
The other role that health professionals, in particular physicians and nurses, play is in referring patients to palliative care. When we explore the reasons why health professionals are not referring their patients to palliative care, many reasons surface. Some of these reasons include the fact that services are not available in their area or that they are afraid of “losing” their patient. The first reason is valid; the second is not, as most palliative care is consultative. But the reason that is hardest to understand is when providers do not refer because they believe that a palliative care referral means giving up on life. In fact, the opposite is true.
As noted above, palliative care goes hand-in-hand with curative treatment. Most importantly, as an article, published in The New England Journal of Medicine (NEJM) in August 2010 highlighted, researchers have found what many had suspected for some time, that receiving palliative care actually helps patients to live longer.
The researchers evaluated the utility of early palliative care for patients with metastatic non-small-cell lung cancer. Newly diagnosed patients were randomly assigned to either early palliative care in addition to standard cancer care or cancer care alone. The results showed that not only did the patients who received palliative care have a better quality of life; they also lived longer, with a median survival of 11.6 months compared with 8.9 months in the group that did not receive palliative care. Since this article was published, other smaller scale studies have duplicated these findings.
There are many benefits to the health care system of palliative care … it reduces readmissions, results in few admissions for futile care, and in general, reduces costs associated with serious illness and end of life care. But, as important as reducing costs is, it pales besides the human imperative to enhance the quality of life of those we care about. And, no one would disagree that enabling those we love and care for to live as long as possible with the highest quality of life possible is a higher order goal.
Palliative care is an approach that requires close teamwork from healthcare professionals, from nurses and physicians to social workers, pharmacists, dietitians, chaplains, counselors and many more. Thanks to this teamwork, the needs of the patient and family can be assessed, understood and addressed. And, thanks to this teamwork, palliative care professionals are helping patients with serious and chronic illnesses live longer and enjoy their lives more. Isn’t it time that all of us who are health care professionals set aside our preconceptions and control issues, make the necessary referrals, acts as teams and focus on the best for patients and their families.