The State of Palliative Care Today
Over twenty years later since the SUPPORT trials, the United States has made substantial progress in providing palliative services. Hospice referrals have increased dramatically since the early 80s. Most large hospitals now have palliative care centers. Since 2007, palliative medicine was certified as a specialty for the first time. “We are definitely better than we were twenty years ago,” said Dr. V.J. Periyakoil, director of Palliative Care Education and Training at Stanford University’s School of Medicine, “But are we where we should be? Absolutely not.”
In 2014, The Institute of Medicine released results from its follow-up study, “Dying in America.” This landmark report looked at the state of end of life care in the U.S. “[It] found major gaps that need to be addressed before we can claim that we are very good at providing care at the end of life,” said Periyakoil.
In its “Dying in America” report, The Institute of Medicine issued a series of findings and recommendations on how to improve care at the end of life. One big problem cited by the report was the critical shortage of palliative care specialists. On average, there’s only one specialist for every 1200 people in need of palliative care. Periyakoil says most medical students tend to avoid palliative care and geriatrics because these specialties pay very little, compared to other specialties like cardiology or plastic surgery. “The physicians are already in debt because they went to many, many years of medical school,” said Periyakoil, “Naturally, the tendency is to pick some specialties which are higher in fee reimbursement, so they can pay off their debt. And palliative care and geriatrics are sub-specialties that pay the least. So you really have to think about doing palliative care because it’s a calling—something you care deeply about.”
In 2015, The California HealthCare Foundation and The Coalition for Compassionate Care in California released “Dying in California: A Status Report on End-of-Life Care.” The report found that while California has made significant strides overall, “the growing demand for palliative care far outpaces the capacity of services.” While most large major hospitals have palliative care centers, smaller, for-profit hospitals and rural hospitals are less likely to have palliative care programs. Eight rural counties have no programs at all.
Lack of Basic Training and Education in Palliative Care
Another problem cited by the “Dying in America” report is lack of training and education. Many dying patients and people with serious, life threatening illness are not aware of palliative care or hospice as options . Even if they are informed of their end-of-life options, it’s often too late to do them much good. Most of today’s physicians and nurses have little or no training in basic palliative care and communication—how to speak with dying patients with sensitivity and kindness.
Dr. LaVera Crawley remembers being appalled by a phone message left by the physician treating her ailing father. “ ‘Okay, the results came back and you have cancer, so I want you to call my office, make an appointment with my secretary within the next couple of weeks and let’s see what we’re going to do with that’—BEEP,” said Crawley, “My father called me and played that message for me as he’s crying. This was horrible—this is how he found out he had cancer from his doctor.”
Years later after her father died, Crawley encountered the same doctor taking part in a study she was conducting at Stanford on how physicians delivered bad news to their patients. “He told the story of the first time he lost a patient after surgery,” said Crawley, “And he remembered breaking down crying, experiencing the emotions of the loss and whatever sense of failure he had.” Crawley said what he expressed was a completely, normal human emotion, but he was taken to task by his colleagues. “He said that his attending physician and all his peers came down so hard on him and told him if that’s the way he was going to respond to his work, he should quit now,” said Crawley.
Much is expected of the medical profession. Traditionally, most patients have looked up to doctors and trusted them to have all the answers. Part of the expectation is that doctors are in complete control of themselves. They exude an air of complete confidence. They don’t cry or faint and they never reveal their emotions. “Just the facts, ma’am,” said Crawley, “In other words, pulling from that old Dragnet television show, if he just stayed factual with the patients and just walled off his feelings, that was the way he was going to do it.”
Discussing something as sad and gruesome as death can be difficult for most doctors. Public health specialist Dr. Richard Jackson says a common way for physicians to wall off their feelings is to lapse into incomprehensible medical jargon, resort to robot-like analysis, and keep discussions with patients business-like. “But it doesn’t work when you’re sitting there talking to the panicked parents whose child has just been hit by a car,” said Jackson, “You can’t walk in and talk about cranial sutures and that sort of thing. You’ve got to talk about what they’re dealing with.”