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

Asking the Right Question

Richard Della Penna, MD

[Citation: Della Penna, R. Asking the Right Question. Innovations in End-of-Life Care, 2000;2(5), www.edc.org/lastacts]

The AHA’s Circle of Life Award reflects the increasing awareness of a need to afford each of us an opportunity to discuss, plan, and define the kind of care we want as we approach death. The recognition of Franciscan Health System West’s Improving Care Through the End of Life is noteworthy as this program possesses key elements required to build systems of care that are reliably responsive to our needs and wishes when we become seriously ill and approach the end of life. It is important to understand the program’s key features as well as the context of health care in the year 2000.

Health professionals, insurance companies, and care systems continue to focus on episodic and acute interventions. Much of this care is breathtaking. Most people want state of the art care that will truly benefit them, but also want more than what technology alone can offer them. They desire personalized, responsive care that is respectful of their concerns, fears, culture and values.

Moving from concept to change in clinical practice is often difficult. Mixed incentives, shifting reimbursement methodologies, realignments among traditional allies, and declining revenue make change especially challenging as payers and regulators require physicians and other health professionals to do more in less time.1 Innovation in the current environment is difficult if it cannot fulfill the mandate to have a clear and immediate "return on investment." Any new program that does not have a rapid and obvious payback faces very considerable barriers. Promising innovations in areas where there is strong professional or cultural resistance face even greater obstacles. Improving Care Through the End of Life is an example of how a small group of individuals successfully met these challenges and made a difference.

The actual moment of death is brief, but most of us will spend months to years in predictable steady decline. This period is punctuated by losses, but it can be a time for growth, development and closure. Few today would disagree that we each should have the opportunity to know our diagnosis and prognosis, decide what treatments we want, complete unfinished business, express where we want to die, and appoint someone who will make health care decisions for us when we no longer want to or cannot participate in making them. The Franciscan program provides its participants with the opportunity to accomplish these tasks.

Many provider groups are developing population management programs. Population management is based on the understanding that the traditional delivery system does not do a particularly good job at identifying and managing people at high risk from particular diseases or conditions. Health care insurers, systems and providers are investing considerable resources in this approach because individuals with diabetes, congestive heart failure, renal failure and other conditions are typically high cost. Population management relies on evidence-based medicine and introduces additional elements into the traditional approach to care. It usually has elements that ensure better continuity. Significantly less attention and fewer resources have been devoted to developing population management programs that do not have an immediate return on investment and on conditions that do not have an obvious medical responsibility.2 Programs for frail older adults, people with dementia, or those approaching the end of life fall into this category. Why then has the Franciscan program met with success when other similar attempts often fail? What are its core features?

Sustained organizational change and innovation require champions and people with the technical and leadership skills to effect the change. It also requires senior management level commitment. The Franciscan program meets these requirements. The change team’s members were the vice president of mission and ethics, the regional hospice director, the medical director, and a nurse versed in ethics and caring for gravely ill patients.

Physicians and systems do not reliably address the needs of people approaching death.3 The Franciscan program identifies people in a primary care setting who are at risk of dying soon. (Population management jargon refers to this process as risk stratification.) Unlike most other population management programs, it does not depend on laboratory values, medications, or strict service utilization algorithms to target individuals. Instead it relies on physician perceptions. Early on, the program asked primary care physicians to refer gravely ill patients who would benefit from its supportive services. Physician prediction of death in serious illness is actually reasonably accurate when compared to the use of more formal guidelines.4 However, this general request was too vague and too difficult to incorporate into practice. There was difficulty getting physician referrals. Dr. Mimi Pattison’s insightful question: "Would you be surprised if any of these patients died in the next twelve months?" made all the difference. Physicians were much more comfortable and willing answer this question and so begin to target patients who would benefit from a discussion about treatment choices as well as being linked to supportive services available in the community. The referrals came in. Physicians are key in starting discussion and without their cooperation little will change. Gaining physician acceptance and participation removed a barrier. Furthermore, providing physicians with the language skills to open the dialogue and engage in this difficult conversation made the task less onerous.

An important program element is the activity to heighten physician awareness and sensitivity to the issues and the apprehension people have as they approach the end of life. A physician CME program presents an overview that includes dying in America, pain and symptom management, and ways to support gravely ill people. Information alone has little impact. The formal and informal educational efforts of this program clearly convinced physicians that there was value to their patients when making referrals to this program. Without this physician buy-in, success would have been difficult even with Dr. Pattison’s question.

Awareness, education, and demonstrating value, however, are insufficient to change established clinical practice. This has become evident to me a as a physician who has spent the last 23 years working in a large, well established pre-paid integrated delivery system. I have had the opportunity to develop and implement programs that serve vulnerable older adults. These populations include the "frail," people with dementia, the depressed, and those approaching the end of life. This activity has been with Kaiser Permanente locally in San Diego (57,000 65+members), regionally in Southern California (300,000 65+members) and nationally (800,000 65+ members). This experience has provided me with a practical appreciation of the complexities and difficulties of bringing about clinician and system level change and improved performance. This is an especially challenging task in areas that medical culture does not traditionally value.

Our efforts to improve the care of members with dementia have many parallels with the Franciscan program. Earlier efforts, which used the traditional CME approach, were inadequate to change practice. There was no gain simply by asking physicians to do a better job in diagnosing dementia. What made a difference were focused activities geared at heightening physician awareness of dementia as well as the importance of making the diagnosis, and the value of the action plan that follows diagnosis. Successful programs typically introduced dementia care specialists, who worked with physicians in gathering assessment data and took responsibility for ensuring that members and caregivers were linked with educational, support, and planning services within Kaiser and in the community. Physician and caregiver satisfaction showed significant improvement, the care process for people with dementia had less variation, and cost offsets have been demonstrated.5

Both the Kaiser and Franciscan programs target largely invisible populations—people with dementia and gravely ill people who are likely to die within a year, respectively. Both programs had champions with visions of how care could be improved. Both programs increased primary care physician awareness of a condition, improved their understanding of the value in addressing it, and introduced another team member to provide follow up and continuing care. Successful programs to improve the care of depressed older adults have met similar obstacles and have similar program elements to overcome them.

Evidence-based practice guidelines abound and fill volumes, bookshelves and pockets. Most, while terribly important, are too complex for primary physicians to reliably follow given the pressures of office practice. Innovators must recognize this and make the desired change uncomplicated for physicians. Change must be easy for those who are linchpins in the process.

The Donabedian model emphasizes structure, process, and outcome as a conceptual framework for looking at quality.6 Improvement often requires introducing structural changes in the process of care. Effective changes assist physicians in caring for their patients and make it easier for them to do the right thing. Examples include automated decision support and the introduction of other health professionals as team members to collaborate with physicians. Given the demands of clinical practice, primary care physicians have become more receptive to the idea that they cannot and do not have to do it all. Collaboration with nurses, social workers, and others is necessary if their patients are to receive more reliable care. Improving performance in end-of-life care is complex and a team is better equipped to meet the challenge than a lone clinician.

In the Franciscan Health System West’s program, the inclusion of the clinical nurse specialist is a structural change that increases the likelihood of achieving the program’s desired outcomes. It is also the most obvious cost to the program. This additional resource makes it less onerous for physicians to raise the issue of prognosis with appropriate patients. Physicians start the discussion and then seamlessly introduce the patient to the nurse specialist who has the skills and time to continue it. The office setting seems more natural for discussing preferences for treatment and care at the end of life. This contrasts with the hospital with its frenzied pace and crisis orientation. The clinical nurse specialist also provides continuity and acts as a point of contact.

The program empowers patients. Gravely ill people become very dependent on their physicians and look to them for guidance about treatments. Truly informed consent easily fades into the shadows. Hurried physicians offer treatments that offer hope and meaningful life prolongation. They often fall short in realistically explaining the goals, risks, and outcomes of the treatments of serious illnesses. The Franciscan program provides patients time to discuss these matters and better understand what is happening. This feature has the potential to turn patients into informed consumers who can make better choices. The unknown and the dreaded become more evident and less unmanageable.

There seem to be some very positive outcomes of this program. Patients like it. Referrals to the hospice program are improving and hospice length of stay has lengthened. Physicians seem to value the program as indicated by more ready referral. The clinical nurse specialist fits into the pace of every day practice. Many questions, however, remain. What are the key leverage points in the program? Why did it succeed when other interventions have failed?7 Will the program continue when grant support ends? What are the direct and indirect program costs? Are there downstream cost offsets? Do physicians honor treatment preferences as patients move through different sites of care? How stable are these preferences? Does the program use validated instruments? What aspects of the program are most meaningful to patients, families and physicians? Will it work in specialty settings? Will it work in the offices of physicians who are not part of a large provider group or in a large system? Is it replicable? Can social workers be as effective as nurses in the role of care coordinator? What changes in health care financing and public policy are necessary to make replication easier and provide people with the support they require? Can accrediting bodies ease replication? Answering these questions will require further study and rigorous analysis.

In the International Perspectives department, Dr. Neil MacDonald reflects on how the challenges addressed by the Franciscan program play out in the Canadian context. Dr. MacDonald identifies structural aspects of the Canadian health care system that lend themselves to the promotion of such an initiative, as well as how recent governmental budget cuts have put quality at risk in the Canadian system. An oncologist and expert in palliative medicine, his reflections on the strengths and challenges to adequately implementing such a program in another health care delivery system are illuminating.

Improving Care Through the End of Life is an important step in bringing about change. Providers and systems of care can never be truly responsive to the people they care for unless they are able to reliably identify those at risk, provide them with the chance to discuss their treatment preferences, and develop programs to honor them. This is particularly true for those people whose physicians "would not be surprised if they were to die in the next twelve months."

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References

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2. Cassel CK, Jameton AL. Dementia in the elderly: An analysis of medical responsibility. Annals of Internal Medicine. 1981; 94(6):802-7.[Return to Editorial]

3. Lynn J, De Vries KO, Arkes HR, Stevens M, Cohn F, Murphy P, Covinsky KE, Hamel MB, Dawson NV, Tsevat J. Ineffectiveness of the SUPPORT intervention: Review of explanations. Journal of the American Geriatric Society. 2000;48(5 Suppl):S206-13.[Return to Editorial]

4. Fox E, Landrum-McNuff, K, Zhong, Z, Daewson NV, Wu, AW, Lynn J. Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. JAMA. 1999;282(17):1638-45.[Return to Editorial]

5. Della Penna R, Rosenthal, M. Fulfilling the promise of managed care: A joint project between Kaiser Permanente and the Los Angeles Alzheimer's Association. Drug Benefit Trends. April 1998.[Return to Editorial]

6. Donabedian,A. Evaluating the quality of medical care. Milbank Quarterly. 1966;44:166-203.[Return to Editorial]

7. Lynn J, et. al. 2000.[Return to Editorial]