Just like there are standards for cancer care that should affect the big and the little hospitals equally, the same is true for palliative care. Palliative care is not a hobby.

— Shawn Amer and Charles F. von Gunten, MD, PhD

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With its recently issued clinical practice guideline update, reviewed in this issue of The ASCO Post, ASCO has spoken: Interdisciplinary palliative care teams improve the outcomes of cancer care; patients live longer and feel better.¹ There is no doubt. Multiple well-designed studies show the same result. The size of the impact is large. The life-prolonging effect exceeds that of recent billion-dollar cancer treatment blockbuster drugs. There is only one problem—there isn’t a business model that facilitates the transition to routine practice.

More Than Research Findings

To be blunt, rapid changes in contemporary cancer care are not driven by research findings alone. Money drives change. When a new drug has been shown to prolong life, even in a few people, the company that makes the drug finds it easy to fund an intensive education campaign oncologist by oncologist, country by country. That small army of people fans out to touch the whole community responsible for cancer treatment programs to bring the treatment to patients.

The mechanism to charge for the cost of the drug and its administration already exists. It is a relatively simple exercise to have pharmacies stock the drug since it follows a pattern that already exists. Similarly, a new fractionation scheme for radiation therapy that requires more time, or new equipment, feeds a billing scheme that brings in the money to pay for it.

People-Related Intervention

Interdisciplinary palliative care is generally not a commodity provided by a for-profit drug company or equipment manufacturer. What do we do when it is a people-related intervention that yields the improvement? There is no good answer.

The business model of U.S. health care is not set up to incentivize the difficult work of changing models of care to provide comprehensive support to patients and their families. Without a clearly attributable and reliable revenue stream that completely covers expenses, outpatient palliative care (or any supportive service) becomes “nice to have” and not “must have” no matter the source of the recommendation—even ASCO! Any responsible leader of a cancer program who hears “hire more people when marginal revenue enhancement won’t cover the direct costs, let alone the indirect costs, even though patient care is better” utters a groan and moves the proposal to the bottom of the pile behind the desk—or the ‘circular file’ beside the desk—or pushes “delete” on the computer.

Drivers of Change

Consumer demand as a driver of change is an alternative model. The revolution in how maternity care was offered in the United States is a frequently cited example. The change is driven by patients themselves—in that case, expectant mothers who demanded change in such numbers, and with such vigor, that health care (including those who pay for it) had to change.

There have been several large efforts, some of them focused only on the United States and others focused on other parts of the world to try to stimulate this “consumer-driven” change in palliative care. Despite hundreds of millions of dollars and very committed people, it hasn’t worked.

The explanations generally fall to the lack of a unified credible voice. The patients themselves are too frightened, too distracted by their personal situations, too vulnerable to criticize the people who are giving them their cancer treatment, and too sick to be advocates. This is a marked difference from the expectant mother, the “wanting-to-be expectant” mother, or the “expecting to be expectant again and not wanting the same treatment” mother. Once-removed advocates such as family and twice-removed advocates such as friends just don’t get the traction.

So if not consumers, then who? Physicians. The most effective push we have seen is powerful, revenue-grossing oncologists asking for palliative care from their leadership and threatening to “walk” if they don’t get it. A key principle of professionalism is that physicians advocate for the right care for their patients. In this instance, medical, radiation, surgical, and pediatric oncologists and their affiliated nursing and other interdisciplinary colleagues could unite with this scientific evidence in their hands and demand that the system incorporate what should be practice-changing research into routine practice in wealthy as well as developing countries. We should not be divided into our subspecialty tribes—but unite as cancer treatment professionals. The strength of the research is strong enough to justify such behavior. Is there the will? Time will tell.

Practical Suggestions

We have some practical experience from which to offer these suggestions for those who want to bring this practice-changing research to bear in their cancer programs that are part of standard community health systems—not large academic medical centers with superb fund-raising and grant-getting engines.

1. Lay out your vision and get commitment at the top of the organization. An effort that starts with compromise at the bottom of the chain of command to “just get started” won’t get you where you want to go. We’ve seen too many advocates settle for, “well, I could find a few hours for an oncology nurse to provide palliative care to a few patients in the infusion center when she isn’t busy” and never get much further.
2. Use consistent words to articulate what constitutes great palliative care to help solidify both the value provided and what resources are required to achieve that value. Palliative care is an interdisciplinary team approach that includes specialist physicians, nurses, social workers or other mental health professionals, and chaplains addressing the physical, emotional, practical, and spiritual dimensions of illness. It is an added layer of support that can be applied at any time during the course of cancer treatment, including when cure is the goal. Recent reports of the combination of palliative care in stem cell and bone marrow transplant programs emphatically make this point.²
3. Design one palliative care program with one leadership team for the system. Don’t be split into different teams in different hospitals, clinics, departments, or programs. Just like there are standards for cancer care that should affect the big and the little hospitals equally, the same is true for palliative care. That takes as sturdy an organization structure as does the rest of the cancer program. Palliative care is not a hobby.
4. Enlist your cancer doctors in the effort. Our hearts just thrill to the sound of a cancer surgeon saying, “We must have palliative care as a part of our program if we’re to be the best at what we do.”
5. Build it into the electronic medical record and all of the small ways that people are triggered to do the right thing.
6. Measure and report your outcome measures in the same way that other cancer quality measures are reported. Build dedicated data analysts and budget analysts as well as competent managers into your budget.
7. Use your patients as advocates. Some will be eager to share their stories and the role that palliative care plays in their cancer care—give them the platform on which to stand for that kind of advocacy. There is nothing like a patient story to help move bureaucracies.
8. Commiserate with others in other programs who are engaged in the same kind of work—you get great ideas and even better emotional support for the long hard slog of building new programs.

In summary, the research results are in, and the professional association that represents cancer professionals has laid out the clinical practice guidelines that should guide standard care in standard health-care settings in the United States and around the world. It’s our job to take it to the next step and make it a reality where we work. Will you take up the challenge? ■

Disclosure: Ms. Amer and Dr. von Gunten reported no potential conflicts of interest.

References

1. Ferrell BR, Temel JS, Temin S, et al: Integration of palliative care into standard oncology care: American Society of Clinical Oncology Clinical Practice Guideline Update. J Clin Oncol 35:96-112, 2017.

2. El-Jawahri A, LeBlanc T, VanDusen H, et al: Effect of inpatient palliative care on quality of life 2 weeks after hematopoietic stem cell transplantation: A randomized clinical trial. JAMA 316:2094-2103, 2016.