Palliative care: Now what? Diane E. Meier, MD, FACP Director, Center to Advance Palliative Care Mount Sinai School of Medicine New York, New York Chicago

Sources of support for palliative care: Diversify Hospital dollars for cost avoidance, and quality, accreditation goals MD and NP Billing: Clinical revenues Medical education dollars Grants, industry Charitable foundations in your community Philanthropy

Individuals $ (75.0%) Foundations $24.50 (12.0%) Bequests $16.02 (7.8%) Corporations $10.86 (5.3%) SOURCE: Giving USA/AAFRC Trust for Philanthropy 2004 Contributions: $ Billion By Source of Contribution

Why it’s necessary Clinical income typically inadequate to support core team operations Grants are for specific (usually research) purposes Hospital support unreliable Medical school support ditto Pharmaceutical dollars: perception of and actual conflict of interest

Advantages of Philanthropy Dollars Can be applied wherever needed Builds reputation and support in the community Less likely to create appearance of conflict of interest Available in most communities Available to academics and non academics alike Pays for what nobody else wants to pay for

Why People Give Money You ask them They have money to give away They want to make a difference To say thank you They are creating a living legacy It helps them grieve It gives them a way to relieve tension Out of fear

Philanthropy and Palliative Care Everybody gets it, everybody cares about it, everybody has a powerful story. Genuine desire to contribute to improving the experience for others. Your need is real and easy to justify. Families and patients are grateful and want to express it in real terms.

Approaches If somebody asks you how they can help, tell them. When somebody wants to know why you work so hard, tell them. Ask for support. “I hope we can count on you to help us build this important program.”

What Influences People to Give You do. People give to people, not causes. Relationships are all. The program’s leader is usually the best advocate (because the most motivated) and the one who best legitimizes the donor’s interest.

It’s all about relationships Location is to real estate as relationship is to philanthropy.

Making contact After an offer or an indication of interest: “Now that we’ve spoken a little bit, I hope you’ll think seriously about supporting our program. Can I call you in a couple of weeks to follow up on our conversation and perhaps get your answer?” Make the call when you said you would. If you set up a time to call, call at that time, on time. Respect people’s time. They’re busy too. If you’re working on a large gift, several contacts are likely to be necessary. Let the person speak and ask you questions. Then, Ask for money. “Would you consider a gift of $100,000 to support a nurse coordinator position?”

Fear of asking You actually have to ask. If you don’t ask they won’t give.

How to think about it Your cause is good. You are not asking for yourself (even though it feels like it). You and the donor are united in your common concern about care of the seriously ill and dying. This is an opportunity to really make a difference in a lot of people’s lives. Establish your credibility. Show seriousness of purpose, be firm, positive, self confident. Don’t be cowed!

The Case For Palliative Care All people deserve relief from suffering at every stage of life Palliative care supports the patient and the family Palliative care is the gold standard way to approach care of persons with advanced illness

From Prospect to Donor: Making the Case Mention the many ways a gift can be made (check, stock, pledge, bequest, trust, etc.) Mention other donors Summarize importance of gift Share your personal beliefs

Asking for a Gift From Individuals: The Solicitation Conduct solicitation in comfortable setting Decide on best solicitor(s) Frame and focus your introduction Discuss benefits and the vision of a gift Ask the prospect for a gift of $X Wait for a response -- Do not speak again Agree on next steps before concluding

No previous expression of interest, a sample approach Call and tell the secretary who you are and that you need to speak to Mr. Jones for 3 minutes. You’ll get through. Tell Mr. Jones that Mr. Smith suggested he might be interested in your program and you’d like to tell him about it to see if you can engage his support. Ask if you can make an appointment to see him. Show up on time. Send materials in advance. Be business-like, polite, brief, and leave on time at the end of the appointment. Introduce your cause and let them tell their story. ASK (Say what you need). Do not speak until Mr. Jones does. Ask if you can follow up with a meeting in a week and secure a time to do that.

Intellectual Barriers to Success Not making the case clearly Not showing need Asking for too much or too little Not having done the right research Not showing or defining success Not having engaged prospect during cultivation Not timing solicitation properly

Personal Barriers to Success Seeing fundraising in a negative light Fearing rejection Feeling inadequate to receive support Feeling uncomfortable with wealthy people Not having/projecting positive self image Not feeling part of success

Stewardship Keep in touch by mail, by phone, and in person. It’s you they’re giving to. Try to engage your donors as advocates, ask if they’d like to join your board, ask for their help in securing the financial sustainability of the program by helping you to make other contacts with people who might be concerned about this issue.

The Development Office The good news: They’re professionals at this. They know people. They have infrastructure (help with proposal writing, research on potential contributors, stewardship). The bad news: They have a lot of competing obligations.

Working With the Development Office: Our Role Provide background information on prospect Present specific request for help Use lay language Be prepared to negotiate among competing requests Be the squeaky wheel

Working With the Development Office: Their Role Providing research Talking to prospects with you Writing proposals Strategizing on the best approach Writing letters Writing stewardship reports Creating brochures and information packets

Endowment The good news: perpetuity, sustainability, security. Your program will be there after you’re not. The bad news: You get 5% of the principal. Therefore, aim high. A $20 million endowment = $1 million per year core operating budget.

Spending money to make money: the back end Some people hire their own full time or free- lance development staff. Return on investment > 4:1. Research and cultivate potential contributors Establish a database of grateful patients and their families, past donors, conference attendees, friends, family foundations, corporations, community foundations Record all contacts, track status, follow-up Assure stewardship

Collateral Materials Follow up letters Annual appeal letter Brochure-Newsletter Testimonials Supporting materials (publications, news articles, video, awards) List of giving options- the menu

High Level Support Honorary chair Trustees Advisory Board Executive committee of the advisory board

Summary Fundraising is a big business All successful not-for-profits have figured this out Most money is generated from individuals Relationships are key Being positive and personally committed is the real secret Use the development office to your advantage

Diversify Hospital dollars (the cost avoidance argument) Clinical income Philanthropy/endowment Medical school dollars Foundation grants

Foundation Sources Local foundations support local talent Once funded, future funding easier Commitment to strengthening the community Identify local foundations with health/aging/family/access focus Build relationships over time The Community Trust

Fortune favors the prepared mind. Good luck!

Take-home principles Define palliative care using National Consensus Project language: Palliative care expands traditional disease-model medical treatments to include the goals of: enhancing quality of life for patient and family, optimizing function, helping with decision-making and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care. Align messages - with the mission and concerns of key decision-makers and other audiences Measure- both for quality and to justify your existence Finance with a diversified portfolio - There is funding for this type of care. Many ways to get there so start somewhere : Examples presented not intended to cover every setting. Borrow what fits, leave what doesn’t. An imperfect program is much better than no program. Build and grow from there.

More Take-Home Messages Identify and overcome barriers Get educated about the clinical aspects of palliative care Don’t waste time re-inventing the wheel- use CAPC resources.

Common barriers to getting started (in addition to money) “I don’t know enough about palliative care.” “There’s no one here with the necessary training.” “I don’t have time.” “Our doctors will never refer.” “We just keep having meetings but never seem to actually get started.”

“I don’t know enough about palliative care.” Get training (EPEC, ELNEC, DELeTCC, AAHPM- HPNA, Harvard advanced courses) Subscribe to the J of Palliative Medicine. Get the Oxford Textbook of Palliative Medicine Do a clinical site visit (list of places accepting visitors is on the website) Take a year off and do a fellowship (AAHPM website) or an APN (HPNA website) degree program

Education is Not Optional Training opportunities ELNECwww.aacn.nche.edu/elnec EPECwww.epec.net EPERCwww.eperc.mcw.edu AAHPM Harvardwww.hms.harvard.edu/cdi/pallcare/ Fellowship training APN palliative care training programs, ANCC certification MD Certification: ABHPM Clinical site visiting programs: professional-development/Training/index_html#clinical Web resources

“I don’t have time.” Think about what you really want to do with the rest of your professional life. The highest priorities should get the time. Rotating core team of docs and nurses- take turns. Recruit help from outside- call leaders of APN programs, contact fellowship training programs. Retrain or cross-train existing interested staff- hospitalists, oncologists, geriatricians, retiring MD leaders, APNs.

“Our doctors will never refer.” Identify and empower opinion leaders, MD + RN champions Start slow, lead through competence, availability, word gets out Focus energy on the low hanging fruit, not the curmudgeons Critical mass>rising demand Audience-specific marketing, survey docs on their needs, referring MD is the client Patience, persistence, eyes on the prize

“We just keep on having meetings but never seem to get started.” Visit a Palliative Care Leadership Center Hands-on training and tools to jump-start your program: “The program made all the difference. Because of what our hospital staff learned, our palliative care program now has more patients, a larger budget, and much more legitimacy through out the hospital. It really helped to have a leader in the field behind our efforts.” Erin Rhatigan, RN, HPNC Community Hospital Monterey Peninsula

Advice to local champions: Just do it! “Remember, it’s better to beg forgiveness than to ask permission… When you begin you just start doing it.” von Gunten J Pal Med 2000;3:

CAPC Resources- no reinvention of the wheel National seminars Palliative Care Leadership Centers Publications: The Case; The Guide Website

Palliative Care Leadership Centers Hands on training and tools to fast -track your palliative care program Six exemplary palliative care programs serve as visiting and training sites for new program leaders: at 2 yrs. post visit, 60% success rate. Visits scheduling through Information and registration on

The CAPC Impact Calculator Register for the Palliative Care Leadership Center training Full text of national meeting presentations and appendices, downloadable PowerPoint CAPC publications in PDF format Spread sheet financial templates, cost avoidance analyses Needs assessment tools and forms Standardized progress notes, billing cards, orders, care pathways Position descriptions, staffing models Program models Marketing tools, brochures Billing strategies Alternate funding sources via philanthropy, foundations Case studies Call or us if you can’t find something.

CAPC Projects: Palliative Care Guidelines National Consensus Project on Quality Palliative Care: Essential Elements and Best Practices Guidelines downloadable or National Quality Forum Framework for Hospice and Palliative Care

Is all of this having any impact? 2004: >1102 hospital based palliative care programs in the U.S. (2006 AHA annual survey), 74% increase since : 70% of COTH-member teaching hospitals report a palliative care program (2006 AHA annual survey) MDs now ABHPM-certified in palliative medicine.

# of Hospital Based Palliative Care Programs in the United States, (Source: AHA Annual Survey)

U.S. Hospital Based Palliative Care Programs (AHA Survey 2004)

Our healthcare system is wealthy… In the skill and commitment of its professionals In the privilege and rewards of the work In the strength and capacities and gratitude of patients, families, and communities

Evaluations Tell us what else you need Tell us what we could be doing differently We really want your feedback so we can help you start and sustain your palliative care program

Thank you

Foundations: $25-100,000 Know your local foundations in your community. Build relationship. Local private foundations: The Community Trust Grantmatch: The Foundation Center: Philanthropy news network online Grantmakers in Health: Grantmakers in Aging: Medweb:

Foundations, cont’d. The Foundation Center: Grants for hospitals, medical care, and medical research FunderSearch: Corporate funders that support hospitals, medical centers and clinics. Corporate Giving Watch 2000;19:17. Hospice Foundation of America:

Foundation sources Regional Associations of Grantmakers: