Palliative Care Programs: What, Why, and How? - Hospitals

Diane E. Meier

IN THIS ARTTICLE...

Establishing a palliative care service can improve patient care and ease family concerns for patients who are hopelessly, ill. For the hospital, such services can improve utilization outcomes. Take a closer look at a palliative care service operating for nearly five years at Mount Sinai Hospital in New york City.

INTEREST IN ESTABLISHING hospital-based palliative care programs is growing as a result of public and professional recognition of the need to improve care of the seriously ill and dying.

All of us will face the reality of chronic illness and death--for ourselves as well as our families. The vast majority of patients with advanced and serious illness receive care in hospitals, where research shows that care of the dying typically fails to address the physical and emotional suffering and communication with the patient and family about goals of care seldom occurs. (1-3)

Hospital-based palliative care adopts the philosophy of care and interdisciplinary practice developed by the hospice movement and applies it to hospitalized patients based on need and severity of illness, independent of prognosis.

Focusing on relief of suffering, promotion of function, clarification of goals of care and support for patient and family caregivers, palliative care aims for the best possible quality of life as determined by the patient and family.

Demonstrated clinical benefits of hospital-based palliative care include:

* Reduction in symptom burden

* Care concordant with patient-family preferences

* Patient-family-professional consensus on the goals of medical care

* Improved patient and family satisfaction

* Improved utilization outcomes (length of stay, ICU days, readmission rate, rate of hospice referral, ER use)

Why hospital-based palliative care?

In 1997, over half of adult deaths in the U.S. occurred in acute care hospitals.

Ninety-eight percent of Medicare decedents spent at least some time in a hospital in the year before death, and 15 to 55 percent of decedents had at least one stay in an ICU in the six months before death. (3)

In the largest study completed on care at the end of life, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) showed deficiencies in quality of care and lack of communication between physicians and patients. (3)

Hospital-based palliative care is needed because death in the hospital is characterized by:

* Physical suffering

* Poor to non-existent communication about the goals of medical care

* Lack of concordance of care with patient and family preferences

* Huge financial, physical and emotional burdens on family caregivers

* Suffering, burn-out and high turnover among health professionals

* Fiscal impact on hospitals

The Mount Sinai experience

Mount Sinai's Hertzberg Palliative Care Institute began in 1997.

Among more than 1,000 hospitalized patients receiving palliative care, substantial improvements in pain, dyspnea, constipation and nausea were observed. High levels of satisfaction about the care given to patients were also demonstrated.

The comparison of Mount Sinai Hospital patients who died with and without involvement of the palliative care service and who had a minimum length of stay of at least two weeks before death demonstrated a median length of stay of 25 days for patients who received a palliative care consult versus 27.6 days for those who did not.

This difference appeared to be due primarily to family and physician decisions to transfer some critically ill, comatose and ventilator-dependent patients out of the ICU for terminal care and ventilator withdrawal.

An analysis was also conducted of patients in the hospital at least two weeks who received a palliative care consultation and, as a result of the consultation, were discharged home or to a nursing home (typically with hospice care), but died soon after (within four weeks of discharge).

These people were patients who would have likely remained in the hospital until death in the absence of palliative care. Comparing these individuals to long-stay patients who died in the hospital without palliative care consultation yielded an even larger difference in length of stay (median of 4.5 days difference in length of stay, 23.1 days with palliative care consultation and 27.6 days without).

The result is highly significant decreases in length of stay are associated with both Mount Sinai's and other programs-hospital-based palliative care services.

The success of palliative care at Mount Sinai in improving quality of care and utilization outcomes is similar to other programs.

Numerous studies point to reduction in hospital and ICU length of stay and more appropriate utilization of high-technology therapies with no increase in risk adjusted mortality. (6.11)

In addition, some hospital programs demonstrated cost savings associated with reductions in length of stay through:

* More timely identification of patients with a terminal prognosis

* Facilitation of patient or surrogate decisions to receive on-going care outside the hospital (e.g., go home with hospice, home care or nursing home care)

* Decisions to forego further attempts at disease modifying or life-sustaining therapy (5, 11)

Reduction in medically unnecessary, yet costly and burdensome, medical interventions and procedures as a patient nears the end of life are also demonstrated. (5-7 9, 11-15)

Developing your palliative care program

A new palliative care program begins with vision, mission and values statements for a palliative care service.

What is the scope of palliative care services your hospital needs? What are the goals the program is supposed to accomplish for your institution?

These statements should define the purpose and scope of a palliative care program as well as make explicit its contribution to the organization's overall mission. Data about your institution and its unique characteristics and patient care needs will determine the nature of the program. (4)

Palliative care program goals include:

* Identification and treatment of suffering

* Improved communication between medical and nursing staff and patients and families

* Assurance that the care provided meets the needs and goals of patients

* Integration and continuity of care as patients traverse hospital, nursing home and home care settings in the course of a serious and complex illness

* Sophisticated discharge planning attentive to the safety and security of patients and families alike

* Bereavement support (4)

Strong leadership is critical to the successful development of palliative care programs. The effective program director should be an opinion-leader and have a high level of clinical competency.

Successful leaders also have the management and administrative skills necessary to collaborate not only with an interdisciplinary palliative care team, but also with the multiple associated programs, community institutions, leaders and stakeholders whose on-going support and commitment will contribute to the long-term integration and sustainability of the program. (4)

Strategy involves answering four key questions:

* Who are we as a hospital?

* Who needs palliative care here?

* What do we want to achieve with a palliative care program?

* How do we get to where we want to go?

Needs assessment

Answering these questions requires collecting and analyzing data that establish the need for and feasibility of the proposed palliative care program.

Market data analysis requires a review of patient/population demographics, economic trends, and already existing community palliative care and pain management resources.

Hospital and patient data analysis may involve a review of medical records (for more detailed descriptions of the care delivered to dying patients in your hospital) or hospital databases (with information on patient volume, demographics and financial data). (5)

This information is used to characterize the patient populations that can benefit most from a palliative care service. To the extent possible, it is also helpful to demonstrate costs to the hospital (in length of stay and ancillary expenses) for failing to identify and institute appropriate services and discharge options for this vulnerable, complex and seriously ill patient population, many of whom are dying.

Data on sources of suffering in seriously ill and dying patients in the hospital also create a compelling argument for palliative care services, as it did at Mount Sinai. (4)

Identifying supporters and stakeholders

Community resources that provide palliative care hospice, pain management, home health, nursing home care, and other services that deliver care for patients with chronic disease or who are nearing the end of their lives should be identified and accessed.

The goal is to identify how the proposed palliative care program might facilitate collaborative opportunities with other providers in the community.

This process also helps you determine whether it is better for the institution to build its own palliative care program or buy services through a contracts with existing community providers such as hospice. (4)

The next step is to gauge the interest of institutional leaders. This helps reconcile your priorities with those of the hospital leadership, with the existence of similar or competing services and with the needs of patients and families.

Even if you are in a leadership position within your hospital or institution, your colleagues and board of directors will require a sound justification that incorporates a realistic business plan before approving new resources for a service that may have difficulty covering its operating costs through billing income.

One way to begin this analysis is by interviewing various stakeholders likely to be affected by the new program. Simply taking the time to listen to other perspectives on care of the dying in your hospital goes a long way toward enlisting support for your proposal.

A summary of findings of these discussions documenting the support and interest of institutional leaders is part of the business plan. (4)

Based on these discussions with opinion leaders and stakeholders, you can identify palliative care champions. Commitment from these individuals is necessary to influence the institutional culture to accept the new model of care represented by palliative medicine.

Ideally, some of these people will represent the mainstream of the hospital's culture, command the respect and attention of their colleagues and be influential in establishing a consensus among their peers. (4)

Components of a business plan

Hospital finance and planning staff may help draft a business plan, including: Justification for the palliative care program: An introductory section explaining why palliative care of the seriously ill and dying is the standard of excellent compassionate care establishes a social and medical context for the business plan.

* Program goals and objectives: A mission statement along with program goals for both short-term (the next 12 months) and longer-term (three to five years) plans should be included. Program success will be measured in part by the ability to meet these goals and objectives, so they should be as specific, feasible and measurable as possible.

* Palliative care service model: Select the most appropriate delivery model for a hospital-based palliative care program in a particular setting. One model does not fit the needs and resources of every institution. Choosing the right model may be a function of human resources, patient load, physician practice patterns and culture, availability of trained palliative care staff, and other circumstances. Common organizational models for palliative care programs include a consultation service team, a dedicated inpatient unit, a combined consultative service team and inpatient unit, a combined hospice-palliative care unit or a hospital outpatient palliative care clinic.

* A marketing and publicity plan: Institutional champions are invaluable as marketers for the new program, as are satisfied families, caregivers and referring professionals. A publicity plan outlining specific activities and tools to promote the new program to internal and external audiences is important.

* Operations and financial plans: The next step is to identify and list all the resources required to put the new program into operation. A financial plan based on anticipated revenues (including value-added revenues and cost avoidance resulting from the program) and cost estimates for marketing and operations are the final and perhaps the most critical components of a convincing business plan. (4)

References

(1.) http://www.chcr.brown.edu/dying/usa_statistics.htm

(2.) Meier, D., Morrison, S., Cassel, C. "Improving Palliative Care." Ann Intern Med. 1997, 127:225-30.

(3.) 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) "JAMA 1995, 274:1591-98.

(4.) Meier, D. "Planning a Hospital-based Palliative Care Program: A Primer for Institutional Leaders." Center to Advance Palliative Care. 2000.

(5.) Lilly, C., DeMeo, D., Sonna, L., Haley, K., Massaro, A., Wallace, R. and Cody, S. "An Intensive communication Intervention for the Critically Ill." AM J Med 2000,109:469-75.

(6.) Carlson, R., Devich, L. and Frank, R. "Development of a comprehensive Supportive Care Team for the Hopelessly Ill on a University Medical Service." JAMA. 1998, 259:378-83.

(7.) Campbell, M and Field, B. "Management of the Patient with DNR Status: Compassion and Cost Containment." Heart & Lung. 1991, 20:345-8.

(8.) Jurchak. M. "Report of a Study to Examine the Process of Ethics Case Consultation." J Clin Ethics. 2000, 11:49-55.

(9.) Campbell, M. and Frank, R. "Experience with an End-of-life Practice at a University Hospital." Crit Care Med. 1997, 25:197-202.

(10.) Dowdy, M., Robertson, C. and Bander, J. "A Study of Proactive Ethics Consultation for Critically and Terminally Ill patients with Extended Lengths of Stay." Crit Care Med 1998, 26:252-9.

(11.) Heilicser, B., Meltzer, D. and Siegler, M. "The Effect of Clinical Medical Ethics Consultation of Healthcare Costs." J Clin Ethics. 2000, 11:31-9.

(12.) Field, B., Devich, L. and Carlson R. "Impact of a Comprehensive Support Team on Management of Hopelessly III Patients with Multiple Organ Failure." Chest. 1989, 96:353-6.

(13.) Manfredi, P., Morrison, R., Morris, J., Goldhirsch, S., Carter, J and Meier, D. Palliative Care Consultations: How Do They Impact the Care of Hospitalized Patients?" J Pain Sympt Manage. 2000, 20:166-173.

(14.) Marik, P. and Hedman, L. "What's in a Day? Determining Intensive Care Unit Length of Stay." Crit Care Med. 2000, 28:2090-3.

(15.) Campbell, M. and Guzman. J. "Improving the End-of-life Experience of MICU Patients Through a Proactive Approach to Palliative Care Consultation." Unpublished.

Site of death: Time trends

                1989  1993  1997

Hospitals:       65%   56%   53%
Nursing homes:   18%   19%   24%
Home:            17%   21%   23%

(Teno et al. Brown Site of Death Atlas of the U.S:
www.chcr.brown.edu/dying/usa_statistics.htm and 1993 National Mortality
Followback Survey)

RELATED ARTICLE: Center Offers Help To Create Palliative Care Program

Patients and their families need your palliative care program now.

Many new programs that expected very few consults in their initial stages were surprised by the high volume of referrals received from colleagues anxious to provide excellent, compassionate palliative care for their patients.

No plan can anticipate every eventuality, and all will need revision, but anticipatory planning can increase the likelihood of success and often results in identification of resources and support not previously recognized. (5)

In planning and sustaining a hospital-based palliative care program, your institution may need more help than your stakeholders, finance staff or other key players can provide.

The Center to Advance Palliative Care was created to make superior palliative care more widely available in hospitals and health systems. Through education, special studies, technical assistance and information resources, the Center can assist your institution in the process of developing and sustaining a successful program.

To access resources available through CAPC, call 212-241-7885 or email capc@mssm.edu Extensive information and resources useful for establishing palliative care programs are available on CAPC's website at www.capcmssm.org.

Everybody with serious illness spends at least some time in a hospital...

* 98% of Medicare decedents spent at least some time in a hospital in the year before death.

* 15-55% of decedents had at least one stay in an ICU in the 6 months before death.

Dartmouth Atlas of Health Care 1999

Deficiencies in medical education

* 74% of residencies in U.S. offer no training in end of life care.

* 83% of residencies offer no hospice rotation.

* 41% of medical students never witnessed an attending talking with a dying person or his family, and 35% never discussed the care of a dying patient with a teaching attending.

Billings & Block JAMA 1997; 278:733.

COPYRIGHT 2001 American College of Physician Executives
COPYRIGHT 2002 Gale Group