Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Adding Hospice and Palliative Care Services to the Cancer Center Menu

Thomas Smith, MD

[Citation: Smith T. Adding hospice and palliative care services to the cancer center menu. Innovations in End-of-Life Care. 2002;4(4), www.edc.org/lastacts]

There may not appear to be many similarities between the missions of most palliative care/hospice care organizations and those of National Cancer Institute (NCI)-designated cancer centers. Palliative and hospice care organizations have been dedicated to service at the end of life, exist outside of the mainstream of health care, are run by non-oncologists, have not funded much research, and are almost all not-for-profit. Where it has been studied, palliative and hospice care programs appear to provide excellent pain and symptom control.

NCI-designated cancer centers, on the other hand, are charged with conducting new research, especially translating bench research into clinical trials, and making those findings available to a larger community of patients. Service has not been a major mission, and cancer centers are evaluated almost exclusively on the amount and importance of their research findings (and funding.) Most cancer centers are affiliated with major academic health centers that are financially strapped, so the cancer centers have additional unstated missions of expanding market share, increasing revenues, and increasing philanthropy. The ability of cancer centers to provide good end-of-life care and symptom control has not been well studied. The best indirect evidence suggests that both are sub-optimal, with the SUPPORT study done at academic hospitals documenting inadequate pain control and end-of-life care,¹ and national cooperative group physicians reporting poor pain control of their patients.^2,3

How, then, to pair the missions of two such disparate groups and improve the care of patients with many symptoms? Both institutions work well, according to their own evaluations, and both have long standing cultures and habits, so getting them to work together may not be simple or easy. President Woodrow Wilson once said, "If you want to make enemies, just try to change something."

This issue of Innovations in End-of-Life Care highlights Project Safe Conduct; the integration of a large community-based hospice (Hospice of the Western Reserve) into the NCI-designated comprehensive Ireland Cancer Center (affiliated with Case Western Reserve University/University Hospitals of Cleveland). It includes professional education, a palliative care pathway including easy-to-use accessible pain and symptom management protocols, and support for patient participation in care decisions. The Project Safe Conduct palliative care team targets lung cancer patients, who are still allowed to receive standard oncology care including clinical trials.

The Team consists of a nurse practitioner, social worker, and spiritual care counselor, with consultation from pain specialists, psychologists, and the oncologist. The team is present during physician visits about bad news or end-of-life care decisions. They are physically located at the Ireland Cancer Center.

What have been the outcomes of this demonstration project, so far? Since inception, the number of patients using hospice in addition to regular oncology care has increased from 13 percent to 80 percent. The average length of stay in hospice increased from 10 to 44 days, and the median has increased from 3 to 29 days. The project officially ended a year ago, and they are still analyzing the patient quality of life and family satisfaction and some of the cost data they gathered. So, we don't yet know much about these outcomes and others: whether the patients chose different types of care, the quality of care, quality of life of patients or family, service to the mission of the cancer center or health care system, or costs and revenues.

An objective evaluation of programs like Project Safe Conduct and other innovations in end-of-life care would ask several tough questions:

1. Does it fit the mission of the health care system?
2. Is it what people want?
3. Does it add value at an appropriate cost?

I bring my own perspective to this analysis, as a palliative care doctor, regular oncologist, health service researcher, and payer-of-bills at a large, academic, NCI-designated cancer center. We also are the "safety net" institution providing care to roughly 60 percent of Virginia's indigent cancer patients, and about 15 percent of our palliative care patients are indigent. For those patients, we must work within a shrinking fixed budget.

Does it fit the mission of the health care system?

The ideal mission of the health care system would be to provide comprehensive, holistic, curative and palliative care for all who come to it, regardless of ability to pay. And the mission of the cancer center would include care from prevention, diagnosis, treatment, cure, survivorship, and end-of-life care. In fact, cancer center missions are disparate and often emphasize research funds and impact, market share, growth into insured markets, revenues, and control of indigent care costs. Service may count only if it leads to research findings.

This program could be a major improvement in all the above. It can get research funds and visibility, and someday the NCI might make "service" and "symptom control" part of being a comprehensive cancer center. It might well improve the number of people who enter clinical trials, including minority patients, if patients know they will receive good care; word of such care travels rapidly in patient communities. It might lure suburban, insured patients to downtown, if such programs aren't available elsewhere. It might even improve care with lower costs by standardizing care amongst high volume providers, and getting patients to switch to hospice care before expensive end-of-life hospitalizations.

But, we need more data.

Is it what people want?

It certainly appears to be what patients want. The integration of palliative care provided by an interdisciplinary hospice team right into standard oncology care without having to give up active treatment is a coup. It is critically important for "well" people to remember that people who are dying have a very different perspective. Slevin found that patients would be willing to undergo toxic chemotherapy for a 1percent chance of prolonging life and 10 percent chance of symptom control. Informed cancer doctors and nurses would demand a much higher chance of benefit, but then again they weren't looking death in the eye.⁴ Just recently, Balmer and colleagues found that patients would still be willing to take second-line chemotherapy for very small chances of benefit.⁵ Hospice clients don't see life-sustaining blood transfusions or radiation as "aggressive," but their hospice caregivers often do. As Finucane stated, there is a "deep and abiding desire not to be dead."⁶

An increasing number of my patients skirt the question of dying⁷ demanding n-th line treatments knowing there is less toxicity and that some chance of response is better than no chance of response. They still use hospice, but only the week before they die, a time span that many in hospice find problematic in terms of meeting their clinical or financial goals. A major problem with the US Medicare Hospice Benefit is that aggressive, supportive care is often precluded by cost issues. The hospice provider is paid about $100 a day for all-inclusive outpatient care, and $500 a day for all-inclusive inpatient care. Most hospital beds have costs of at least $800 a day before any type of treatment. Patients going into hospice will feel the pressure to give up epoetin, expensive anti-nausea drugs, expensive pain control measures, such as implantable pumps, radiation, etc.

And, there are whole new classes of cancer-stabilizing drugs in the wings; these drugs won't cure, but will allow patients to live longer with their illness. We don't know if most lung cancer patients will forestall hospice to take non-toxic Iressa™ pills, but all of mine have. Remember, in the US system, it is rarely the case that one can take chemotherapy and be in hospice. If imitinab mesylate (Gleevec™) is an example, these new drugs will cost approximately $2500 a month in addition to other care.

Remember, too, that the longer people live, the more they cost the health care system. We have fascinating data from a recent randomized trial of medical management vs. intrathecal drug delivery systems that better control of cancer pain and drug toxicity was associated with a two-month improvement in survival.⁸ These patients will cost the health system more, which may be good if it generates revenue. Or not – depends on one's perspective.

Again, we need more data to evaluate the program.

Does it add value, at a reasonable cost?

There are no cost estimates available yet for Project Safe Conduct, but I can estimate. The program serviced 233 patients over the course of two years, (or 116 per year). At estimated personnel costs of 2 x $80,000 (advanced practice nurses), $40,000 (part time advanced practice nurse), $40,000 (part time physician help), $60,000 (psychologist), $60,000 (social worker), $40,000 (chaplain) = $400,000 annually, the cost is over $3400 per patient. The additional revenue gained by the multiple hospices, if they are paid at $100/day outpatient for 29 days instead of just 3 days (before the program) will not be shared with the cancer center under current regulations.

The concentration on revenue is a necessary part of program survival. Our health care system at Virginia Commonwealth University made a 0.5 percent profit last year, while some of our for-profit competitors made a 15 percent profit. Who has the most money to grow new programs, buy the new PET scanner, pay for those who slip through funding cracks, and compensate staff?

We don't know if people will pay for these additional services. Or, if insurers will. Remember, the peer-reviewed data are that hospice doesn't save much money; this service could just add costs to an already expensive care system. In our own system, we have found that few patients and no insurers will pay for additional holistic services, so we pay for our own psychologist, yoga, spiritual, and related services out of our own cancer center budget. We see them as "value added" services. From what Elizabeth Pitorak and Meri Armour have to say, Ireland Cancer Center is now subsidizing the Project Safe Conduct team out of its operating budget.

There are some proven ways to save money without compromising quality of cancer care or end-of-life care.⁹ Care coordination (putting someone in charge, and giving them the ability to direct resources where there is need, e.g., a home visit that avoids an emergency room visit and hospitalization) saves 40 percent of health care system costs.^10,11 Our own inpatient palliative care unit lost $140,000 last year, but had the patients stayed on their pre-transfer units, they would have cost $900,000 more. That means a cost savings of $760,000 to the health care system. Those dollars are "virtuous," but still virtual.

Clearly, we need more data. We need to define beforehand if health care payers will look at total cost to society, total cost to the health care system, or just profit/loss for the program. If it is just profit/loss of the program, then the program leaders must be creative in justifying their existence, dramatically reduce costs, or dramatically increase the number served.

Take Home Message

Project Safe Conduct is an exciting development. It should help both organizations fulfill their respective missions, if they can define those missions broadly. No one would argue that this is not good care, but we need to evaluate if it is better care, and if it adds value at appropriate costs.

What should the next steps be? A reasonable evaluation agenda for Project Safe Conduct would include the following:

• Evaluate the value of the program in a randomized controlled trial of patients in and out of the intervention. Pre- and post-cohort studies, or even case control studies, will not be publishable in leading journals because there are so many opportunities for bias. We have been fooled too often in oncology by good ideas.
• Evaluate the value of the program by monitoring the patient and caregivers' quality of life, as well as symptom-specific pain scores. My personal bias is that it will be hard to document improvements in quality of life, as so much else is happening to these patients at the same time. Symptom-specific scores may well show improvement.
• See if the value is gained at appropriate costs by carefully accounting for all charges, costs, and revenues of these patients, preferably in a randomized clinical trial. It could be that this program saves society money, or that it adds an incremental cost. Whether the cost is large or small, and who will pay it, may well determine if such programs can be expanded.

References

1. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). Journal of the American Medical Association. 1995;274:1591-1598.[Return to Editorial]

2. Cleeland CS, Gonin R, Hatfield AK, et al. Pain and its treatment in outpatients with metastatic cancer. New England Journal of Medicine. 1994;330:592-596.[Return to Editorial]

3. Cleeland CS, Gonin R, Baez L, Loehrer P, Pandya KJ. Pain and treatment of pain in minority patients with cancer. Annals of Internal Medicine. 1997;127(9):813-816. [Return to Editorial]

4. Slevin ML, Stubbs L, Plant HJ, Wilson P, Gregory WM, Armes PJ, Downer SM. Attitudes to chemotherapy: Comparing views of patients with cancer with those of doctors, nurses, and general public. British Medical Journal. 1990;300(6737):1458-1460.[Return to Editorial]

5. Balmer CE, Thomas P, Osborne RJ. Who wants second-line, palliative chemotherapy? Psychooncology. 2001;10(5):410-418.[Return to Editorial]

6. Finucane T: How gravely ill becomes dying: A key to end-of-life care. Journal of the American Medical Association. 1999;282:1670-1672.[Return to Editorial]

7. Neff P, Lyckholm L, Smith T. Truth or consequences: What to do when the patient doesn't want to know. Journal of Clinical Oncology. 2002;20(13):3035-3037.[Return to Editorial]

8. Smith TJ, Staats PJ, Pool G, Coyne P, et al. Randomized clinical trial of comprehensive medical management of refractory cancer pain vs. comprehensive medical management plus intrathecal implantable drug delivery systems. Accepted for publication, Journal of Clinical Oncology (Oct 15, 2002).[Return to Editorial]

9. Smith TJ, Hillner BE. Ensuring quality cancer care by the use of clinical practice guidelines and critical pathways. Journal of Clinical Oncology. 2001;19:2886-2897.[Return to Editorial]

10. Addington-Hall JM, MacDonald LD, Anderson HR, et al: Randomized controlled trial of effects of coordinating care for terminally ill cancer patients. British Medical Journal. 1992;305:1317-1322.[Return to Editorial]

11. Raftery JP, Addington-Hall JM, MacDonald LD, et al: A randomized controlled trial of the cost-effectiveness of a district co-ordinating service for terminally ill cancer patients. Palliative Medicine. 1996;10:151-161.[Return to Editorial]

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