Interview with Margaret Clausen

She has worked with state and federal legislative and regulatory bodies and with many local and statewide coalitions to expand access to care for underserved populations and to identify and eliminate barriers to access.

Margaret has served on the Board of Directors of the National Hospice & Palliative Care Organization; on the Board of Directors for Community Health Charities; on the Advisory Board for the California Coalition of Compassionate Care; on the Steering Committee of the Northern California Pain Initiative; and on the Public Policy Committee for the Children’s Hospice & Palliative Care Coalition.

Hospices have always been on the forefront of offering community support during times of public tragedy and loss. But the recent wildfires in Southern California served as a difficult reminder that, as hospice staff scramble to help patients and families, their own homes and lives may be directly impacted by the tragedy as well.

HFA recently spoke with Margaret Clausen, Executive Director, California Hospice and Palliative Care Assn (CHAPCA), and President and CEO, California Hospice Foundation, about how hospices in California have coped during these difficult weeks. Ms. Clausen also talked about other issues facing members of CHAPCA, the partnerships they are forming to address these challenges, and the opportunities that lie ahead.

Q. How were your hospice programs and the families they serve affected during the wildfires in October?

A. While many programs in the affected areas had to deal with evacuating patients and their families, we are thankful that the loss of property and life has not been as severe as it might have been. Most of those people being cared for by hospice were able to be moved to skilled nursing facilities or to family homes in other parts of the state. Some patients had to be moved more than once, which of course added additional stresses to those families.

And while hospice staff were working to help these families, many of them were facing evacuation and potential loss of property at the same time. At one hospice program, more than one-half of the staff had to be evacuated, and another program was unable to operate out of their office for a number of days. For the most part, all of these families have been able to return to their homes, but are facing severe damages from water and smoke, as well as unanticipated expenses related to the evacuation.

Q. How has CHPCA responded to help these affected members?

A. The California Hospice Foundation (CHF) has created a California Hospice Families Relief Fund, a restricted fund created to ease the financial burden of hospice patients and families whose homes were in the path of the fires.
[Note: Hospice Foundation of America has donated $5000 to the California Hospice Families Relief Fund to help hospice families with extraordinary expenses incurred as a result of the fires.] Unanticipated expenses for the families include medical transportation to relocate patients living in evacuated or burned areas, special professional cleaning to remove fire residue from homes of patients with compromised respiratory systems, and lost wages for family caregivers who helped to evacuate or stayed at the bedside of their loved ones during the crisis.

We have already processed a number of requests. One hospice staff member had to be away from home for 3 days, and has a daughter with special health needs. In addition to staying in a hotel, they had to replace a great number of medications and other needs for their daughter. When they returned home, they were still without electricity for a number of days, and also had to contend with very poor air quality. Another staff member found, upon returning to her neighborhood, that while her home was standing, seven homes on her block had burned to the ground. Many of these expenses are not covered by FEMA or private insurance, and the CHF is pleased to be able to offer this support to our members and the families they serve.

Q. How did California hospices respond during the crisis?

A. I was pleased and proud to see how many hospices shifted into “disaster-planning mode.” After the Cedar Ridge fire three years ago hospices in California recognized the importance of developing disaster response plans. CHAPCA has offered conference programs on disaster planning to assist hospices in this process. And luckily for the patients and families, all of the programs that I spoke to during the fire had their own set of plans, which they were able to implement quickly and successfully.

I would strongly encourage all hospice programs to develop a disaster response plan, if they have not already done so. No matter where you live, an event could occur that would require immediate action, and both your staff and the families you serve will benefit greatly.

Q. In your 14 years with CHAPCA, what are some of the changes that you have seen in the field of hospice care?

A. One of the most notable changes has been in the rapid growth of hospice providers. While I think this growth presents both challenges and opportunities, one very positive impact has been an increased awareness of hospice among the general public. People have more information about quality end-of-life care options, and hospice usage has been rising in California. I see the knowledge base growing among health care professionals as well; there is a larger body of knowledge about what hospice is and the quality care that hospice can provide.

Q. What has been your experience with the advent of palliative care?

A. CHAPCA added “palliative care” to our name in 1999, but we had honestly not been very active in providing information for our palliative care members. Thanks to the leadership of a dedicated board member. Dr. James Hallenbeck, we have really begun to explore what our palliative care members need from a membership organization, and how to develop links between hospice and palliative care. Dr. Hallenbeck has formed a group of palliative care providers who meet regularly to develop educational programs and to talk about their special needs. Many palliative care staff tend to feel isolated, working in small programs within hospitals, and we have been able to provide critical networking opportunities.

At the same time, it is important to note that the goal is not to have palliative care emerge and establish itself as a model that is separate and distinct from hospice; the shared goal for all of our members is to provide quality end-of-life care to the families in California and Nevada whom we serve.

Q. What other links have developed between your members?

A. Dr. Hallenbeck is a physician at the VA in Palo Alto, and has helped us to develop some very exciting partnerships between hospice programs and the VA. Working on these programs has been extremely interesting and educational. Many veterans have specific needs and issues because of their experience in the Armed Forces, and sometimes at the end of life those needs have not been recognized and therefore have not been met. We look forward to continuing this partnership and increasing the quality of care that we can offer to all veterans.

Q. In your role as Executive Director of CHAPCA, you track legislation and provide advocacy and public policy support for your members. What are some of the issues that your members are facing in the next year?

A. Like many states, California is facing a severe nursing shortage. The state legislature has tried to address the issue several times, but so far there has been no substantive change. One possible solution that we are exploring is the use of “med-techs”, which some other states have tried with success. But not everyone is convinced that this is the right direction.

And as is most everyone in the country, we are looking at major issues surrounding health care reform. It’s a very big and complex issue in California, of course; we have a very large population of uninsured people. CHAPCA has participated in conference calls with the Governor to address the concerns; one of the major stumbling blocks is economic, in terms of who will actually pay for the coverage. I think this issue will continue to be an important topic both in our state and nationally.

Q. Are there specific legislative issues that CHAPCA is involved with right now?

A. Currently we have a bill in the California legislature that would allow hospices to own a freestanding hospice inpatient facility under their hospice license or to operate a hospice inpatient unit within another facility under their hospice license. As baby boomers continue to age and that demographic shifts, there simply will not be enough skilled nursing facilities or family caregivers able to provide quality end-of-life care. This bill would allow hospices to either build freestanding inpatient hospices that would be licensed as such, or to contract with a hospital or other facility to provide licensed hospice care. I believe this bill will be successful.

CHAPCA is also working with a coalition of health care providers to develop legislation that would create a medical set of orders to be used at the end of life, based on the POLST forms used so successfully in Oregon. [for more information, go to POLST.org]

Adding these forms would be a great service to patients and families, to help them be clear about what interventions they do and do not want at the end of life, no matter where they are.

CHAPCA is also part of a coalition that successfully passed legislation in 2006 that directed the Department of Health Services to develop and submit a waiver to the Centers for Medicare and Medicaid Services (CMS) to allow hospices to provide pediatric palliative care services to a pilot population of Medi-Cal eligible children. The first draft of the waiver has now been submitted to CMS and we are anticipating their response within the next month. A final draft will be submitted by the end of this year and we hope that we will actually be able to begin providing services in 2008. This is an exciting project because it will allow a population of pediatric patients who currently don’t access hospice services very often to receive concurrent curative and palliative care services. If it proves to be successful in terms of budget neutrality (which is required by a CMS waiver), we would look towards expanding the program in the future to all eligible children in California.