Journalists need to talk about death responsibly and honestly, and should be part of the communication process between provider and families, said AHCJ Board Member Irene Wielawski, who moderated “Crisis, cost and quality: New angles on end-of-life care” on Saturday at Health Journalism 2014 in Denver.
David Casarett, M.D., director, hospice and palliative care, University of Pennsylvania Health System, shared the story of a 66-year old patient with advanced heart failure, whose perspective on treatment caused him to shift his thinking about what end-of-life care should look like and what hospice care should be all about.
He convinced CMS to fund a pilot project that supported upstream alternative, palliative care, which focuses on improving quality of life and assisting with medical decision making while living in concert with aggressive treatment. This approach helps patients manage day-to-day symptoms, provides emotional and spiritual support and helps patients to figure out what treatments make sense; it also provides practical support for family and caregivers, all while reducing hospitalizations and improving outcomes.
Bronwyn Long, R.N., D.N.P., palliative care and oncology clinical nurse specialist at Denver’s National Jewish Health, said it’s imperative for practitioners to have a “goals of care” discussion with patients because that is what determines what’s important to the patient – and not to provide care or treatment that the patient really doesn’t want. “Actually holding that conversation with the patient and the family can really help shape that plan of care.”
Getting palliative care into the care plan earlier provides a lot of symptom management support and makes transition to hospice that much easier, she told the audience. “This is life and death, and sometimes, they’ve never had the opportunity to talk about these things before,” she said.
An ideal interdisciplinary effort includes a well-funded program, a board-certified physician, an advanced-practice nurse who can write prescriptions or a registered nurse on staff, social workers and chaplains who have special training in palliative care, and in a perfect scenario, a pharmacist, nutritionist, and psychologist — or at least designated “go to” people who are knowledgable about dealing with the needs of palliative care patients and families. “The big question is how to pay for all of this,” Long said.
Under the Affordable Care Act, it all depends on the plan. Some plans give minimal levels of service, while others are more generous in the number of covered days and facilities. Much of this information is available from the National Hospice and Palliative Care Organization, a good resource for journalists covering end-of-life care.
Deborah Benzil, M.D., a neurosurgeon in Westchester County, N.Y., and director at-large of the American Association of Neurosurgeons, said that while she had great personal interest in this topic, and thought it was an excellent opportunity for specialists and non-specialists to collaborate to achieve optimal patient care, her reality was a little different. She quoted Naked Civics author Nate Garvis, saying, “too many Americans feel death is negotiable.” As long as we see it this way, it’s difficult for us to confront its realities. “Let’s be honest, we think that the perfect death is never.” Many think it happens in your sleep, without pain, and when your life is all tied up nicely.
Benzil said health care’s fairy tale is that we can ease death through hospice and palliative care, but from a neurosurgeon’s perspective, it isn’t that simple. Despite family discussions and even advanced care planning, families and physicians often panic when faced with a medical crisis. It’s the community physicians who are left to pick up the pieces. “We always seem to wait until someone has a deteriorating condition or terminal illness before we have these conversations,” she said.
She cited several recent examples of how our health system insists on expensive options, like placing a DNR patient with a brain bleed in the ICU. Death and dying is 100 percent inescapable but it’s the toughest discussion to have with your friends or family and most physicians don’t want to have a part in it,” she said. With our aging population, death and dying in the US is not getting easier or less expensive, despite our advances in palliative care and hospice. Benzil challenged the audience to to continue to address this conundrum and to find real solutions.
During a lively Q&A, Casarett pointed towards a culture change where physicians are embracing this idea of palliative care plus treatment; however Benzil disagreed. She said specialists are not as quick to jump on board. “If there’s concurrent care, many specialists see that as a failure. And doctors don’t like to fail.”
In response to a question on quality reporting measures, Casarett felt criteria tended to favor larger hospices, and said that it is much harder to measure quality for hospice than for surgery. Benzil, the neurosurgeon quickly jumped into the conversation, taking strong exception to that assumption. Fortunately, or unfortunately, the debate ended there because it was time for the Awards Luncheon.