In 2013, an estimated 1.5 to 1.61 million patients received hospice services, and 1.1 million Americans spent their final days in hospice care.
Hospice patients suffer from serious and progressive illnesses – such as heart disease, lung disease, cancer and Alzheimer’s. Whether they are cared for in their home (which accounted for 94 percent of hospice care in 2013) or an inpatient setting, it takes an interdisciplinary team to deliver a wide range of hospice services for a patient.
In an unprecedented move in hospice and palliative care, nurses and doctors from the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association identified 10 quality measures in a study published in the Journal of Pain and Symptom Management to help caregivers provide the best possible treatment to patients and measure their efforts against peers. The much-needed guidance provides a roadmap for clinicians and staff to continuously improve care, including how to manage pain treatment, screen for physical symptoms, and having a documented discussion of any spiritual preferences patients may have.
David Casarett, MD, professor of Medicine in the University of Pennsylvania’s Perelman School of Medicine and director of hospice and palliative care for Penn Medicine, served as co-chair of the "Measuring What Matters Project." He shared with us some current issues in hospice and palliative care and why these indicators are so important for the field: “They create a common language that we can use to measure what we do,” said Casarett.
First, what's the difference between palliative care and hospice?
Palliative care is an extra layer of support that includes help with decision-making, symptom management, and emotional and spiritual support. It's provided in addition to other medical treatment, so patients getting chemotherapy or waiting for a heart transplant, for instance, can get palliative care. Most patients receive the care from our inpatient consult teams, but some visit our outpatient clinic, and others get palliative home care from Penn's home care program.
Hospice is a comprehensive program designed to meet the needs of patients with serious illness who have decided to focus on comfort and quality of life. Hospice care can be provided in a patient's home or nursing home, or in an inpatient setting. Patients who enroll in a hospice program have access to a visiting nurse, chaplain, social worker, and home health aide, as well as volunteers, physical therapy, and consultation from an experienced physician or nurse practitioner.
Studies show that early intervention with palliative care is beneficial to a patient’s and their caregiver’s quality of life. What prevents so many who are eligible from participating?
There just aren't that many palliative care programs, especially outpatient programs. And home-based palliative care programs are still very rare. The problem is that if it's done well, palliative care takes time (and money). Palliative care includes a wide range of services, including support from a social worker, chaplain, and counselor, that insurance often doesn't pay for. And even visits from a doctor or nurse practitioner, which are covered by insurance, often don't generate enough of a payment to allow a hospital to break even.
For instance, we created a palliative home care program at Penn, called Comprehensive Longitudinal Advanced Illness Management, or CLAIM. It's funded by a grant from Medicare and lets us provide home care services that patients with advance cancer can't get any other way. We can send out a nurse, social worker, chaplain, home health aide, and a nurse practitioner. It's a great program and we've helped more than 1,000 patients. But the program can't survive without that Medicare grant, so it is scheduled to end in June.
You are a co-author on this study that determined the top-ranked quality indicators for hospice and palliative care. Why are these standards important and what are the next steps in ensuring that these recommendations are implemented across the U.S.?
These standards are important for hospitals, hospices, physicians, and patients because they provide a roadmap of how we can measure the quality of palliative care that we provide. These quality measures create a common language that we can use to measure what we do, compare the care we provide with other programs, and identify best practices that we should all be using.
Do you think there is adequate training in palliative care in medical education, especially considering the importance of physicians adapting to these best practices?
As a physician, I didn't get any training about how to talk with patients about goals of care, or prognosis, or decisions about treatment. Like most of my colleagues, I learned through trial and error, at least until I had the good fortune to stumble into a palliative care fellowship. But that's changing, slowly. We're doing a lot now to educate medical students and residents, for instance. And we're also developing training programs for physicians like me who have been practicing for years.
It's a slow process, but we are making progress. And I've been heartened by the warm response our education has received from Penn Medicine physicians. My colleagues really do realize that this is a gap in their skills and knowledge, and they want to do better. It's our job as palliative care physicians to help them.
The measures advise physicians to respect a vulnerable elder’s documented treatment preferences when it comes to end-of-life treatments. Do we need to change the culture among some physicians who advocate for doing anything possible to prolong life at any cost for all patients when that might not always be best? Is it the patient’s responsibility to plan in advance with an advanced directive, for example?
Physicians aren't to blame for the fact that many patients get treatment that is too aggressive, nor is that the patient's fault. We're all responsible, and we all need to play a role if we want this culture to change. For instance, physicians need to be much better, and more comfortable, in talking to patients about their goals and prognosis. And patients need to be more assertive in asking questions and in expressing what they do and don't want. Finally, other disciplines, like nurses, chaplains, and social workers, can all help to promote more open and honest conversations.
"Conversation" is the right word. In fact, Penn Medicine is beginning a broad effort to help support our physicians, nurses, and other staff in starting these conversations with patients. And part of that effort will give patients the tools and the language to start those conversations, too. But these conversations have to be a two-way street.
Health care providers, as well as patients and families, all have a role to play if we want to develop a culture that is more open and honest in talking about what really matters.
To see the top 10 “Measures That Matters,” visit here.