Putting pain on the front burner

What can you do to improve palliative care?

A recent survey of peer review studies related to palliative care by the Agency for Healthcare Research and Quality (AHRQ) found that only five of more than 90 studies targeted multiple outcomes measures and relayed data to providers. The literature, says the report — published in October 2012 — is too heterogeneous: “While a few high- and medium-quality, well-designed health care and palliative care interventions have been conducted to improve outcomes for patients with advanced and serious illness, this report highlights the continued presence of variable findings, quality deficiencies, vaguely defined interventions, and variable outcome measurement tools and reporting in much of this intervention literature.” There has to be more research, bigger samples, and standardization of outcomes measures, it says. (To see the full report, go to http://effectivehealthcare.ahrq.gov/ehc/products/325/1303/EvidReport208_CQGPalliativeCare_FinalReport_20121024.pdf.)

This isn’t a surprise to people working in palliative care. It’s often spoken of as a hospice go-with, as in “hospice and palliative care,” when those in the know will patiently explain that palliative care is symptom relief for anyone who is seriously ill, whether at the end of their life or not. They are gratified that the topic is on the radar of organizations like AHRQ and hopeful that more projects will be created to fill in the gaps the October report outlined.

The palliative care program at Gundersen Lutheran in LaCrosse, WI, is a long-established one that is so much part of its community that some 98% of LaCrosse County residents with chronic illnesses have completed advanced care planning, says Hilary Bingol, MD, one of seven providers associated with the service for the health system. It has a robust quality improvement program, and among its current projects is a four-year-long demonstration for the Centers for Medicare & Medicaid Services (CMS), currently halfway through its term, which aims to expose a wider group of patients to palliative care.

The Late Life Primary Care (LLPC) program targets patients with life expectancies of less than two years and focuses on issues such as continuity of care, quality of life, and respecting the wishes of the patient and family members. It is not limited to those with serious diseases that usually end in death, but also for those with chronic illnesses or patients who are simply extremely frail. The organization estimates that some 7,300 eligible patients with diseases like Parkinson’s, ALS, multiple sclerosis, and stroke will be exposed to the program during the demonstration period.

Bingol explains that Gundersen had a disease-specific advanced care planning process already in place, which was leveraged into the LLPC project. It was designed to help patients make informed decisions on their care based on realistic goals and understanding of the particular disease they have.

Among the data being collected for analysis are length of stay, readmission rates, subspecialist physician visits, and medical testing. Bingol expects to see an increase in hospice admissions and length of stay, but a decrease in services of $3,000 to $6,000 compared to patients not in the program.

Another project involves getting more rural patients access to palliative care through a tele-medicine program. That will enable patients who might be in a small hospital without subspecialty access to get the benefits of palliative care without being transferred to a bigger hospital away from family and the physicians who know them and their wishes.

An ongoing project, Respecting Choices, is an advanced care program that provides disease-specific planning for patients. That project has proved so well-respected and popular, Bingol says, that its leadership team travels across the country, and even as far away as Australia, to explain it to other organizations. (More on the program is available at http://respectingchoices.org/about_us/history_overview.)

Bingol says that of all the places she’s worked in palliative care, Gundersen Lutheran has the most expansive and ingrained program. “Gundersen has pushed our community to where it is,” she says. Still, she’d love to see the expansion of palliative care to all patients with chronic illnesses early in their disease process. “That way, when the disease advances, there is no panic about what to do. They have a plan in place.”

There’s great science to prove that what Bingol wants is a good idea, says Cory Ingram, MD, an assistant professor in family and palliative medicine at the Mayo College of Medicine in Minnesota and the medical director for Mayo’s palliative medicine program in the Mankato area. “It’s a lofty goal to design a way to ensure that all people who are cared for have access to palliative care,” he says. “And I recognize that at a national level there will never be enough palliative care teams to see all the people who can benefit from our services. But it should be — and can be — something delivered by all people in healthcare to some degree.”

A more reasonable goal might be to supply subspecialist care to those who need it, and to raise the visibility and practice of palliative care principles and quality indicators to the health system as a whole, he says. “Palliative care has been shown to increase survival, improve the patient experience, decrease depression, and cut costs. If you could put this in a pill, it would be worth billions.”

More than end-of-life care

At Mayo, Ingram says he’s been thinking a lot about quality indicators and palliative care and linking it to the notion of value. That isn’t just a monetary term, he says. “Cost is just part of value. It’s not just about manipulating numbers, but also about patient wishes, and quality should include the notion of documenting those preferences. It’s not just about assessing pain and making sure it’s adequately treated, but about having conversations with the patient to make sure the care you give them is consistent with their preferences.”

And it’s not just about end-of-life care, either, Ingram says. “That’s like kicking a field goal to win a football game and assuming then that you don’t need to do more than be good at kicking field goals. That’s not how you have a winning season. In order to improve the care of seriously ill people, whether or not they are dying, you have to be involved from day one. They have needs from the start, and understanding them will also improve end-of-life care. What we have now isn’t even end-of-life care; it’s brink-of-death care.”

Why scramble to get it right at the end when studies show that if you start the palliative care process early in the disease process you can have positive outcome benefits for patient, provider, and payer? he asks.

If you look at how seriously ill physicians manage their own treatment, you get an idea of how palliative care can work for the wider patient population, Ingram says. “They avoid things that do not contribute to longevity or quality of life, and by the way, that leads to cheaper care. And docs do it differently because they are better informed.”

While Bingol says one impediment to spending the time required for that kind of patient education is the lack of reimbursement for it, Ingram says when we get to a place of population-based health management and wide expansion of accountable care organizations (ACOs), it will shake out. “This will provide better outcomes for less money. For a hospital or ACO, doing it this way will become like oil in the engine. It will just run better.”

But even now, you should be investing in these programs because doing so provides value to the patients, and you can prove that by looking at the right quality indicators, Ingram says. “That is, having as an outcome that their particular goals and preferences are met by what the medical possibilities are, and that they are very well informed,” he says.

Mayo is working now to form a palliative care center of excellence. When launched later in the year, he hopes to prove its worth by making sure that the data they collect links not just outcomes and cost, but also his notion of value to the patients. “We will look at engagement, education, and efficiency, as well as dollars.”

The focus on palliative care is only going to increase as the population ages, he says. Best get on board now. As you develop programs, he suggests that you make sure you are doing the basics from the start. That includes assessing pain — something that most organizations already do pretty well — and treating it within 48 hours — something that is lacking throughout the country. “Get information on the quality of pain and the level of reduction.” But more than just pain, palliative care means dealing with the relief of other symptoms, including shortness of breath, loss of appetite, and fatigue. Document those items, and you can better see how your program is working for patients — or isn’t.

If you master those basics, you can think about projects related to well-documented discharge planning that includes palliative care. That can lead to reduced readmissions — something every hospital has a financial interest in limiting. “If you address issues like pain and fatigue, if you have great conversations that educate patients about realistic prognoses and setting attainable goals, you can keep them from bouncing back.”

For more information, contact:

  • Hilary Bingol, MD, palliative care physician, Gundersen Lutheran Health System, LaCrosse, WI. Email: hdbingol@gundluth.org.
  • Cory Ingram, MD, Assistant Professor Family and Palliative Medicine, Mayo Clinic College of Medicine, and Medical Director, Palliative Medicine, Mankato, MN. Email: ingram.cory@mayo.edu.