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USING THE LEGISLATIVE PROCESS TO IMPROVE PALLIATIVE CARE

To the Editor:

 

After several recent articles within your journal including those of LeBaron et al,1 "A Community Partnership Approach to Building and Empowering a Palliative Care Resource Nurse Team" and Walling et al,2 "An Interdisciplinary Educational Program to Improve Knowledge and Attitudes About an End-of-Life Symptom Management Protocol," we identified the need to share with readers information about a program that is quite unique within Virginia that may be a model for other regions of the country. This program is called the Virginia Initiative for Palliative Care (VIPC). We submit a history and an overview of this program, which may serve as a demonstration project for others or perhaps a national intervention to improve palliative care through a unique education and mentoring opportunity.

 

As well-established palliative care is focused on improving the quality of life of people as well as their families who are facing life-limiting illness, emphasis is placed on pain and symptom management, communication, and coordinated care, usually by an interdisciplinary team. Palliative care is appropriate from the time of diagnosis and can be provided along with curative treatment. This type of specialized care is a very rapidly growing specialty within the United States. Many healthcare providers are being asked to learn more about improving the quality of life for those who have illnesses we may not be able to cure. Unfortunately, many healthcare providers have limited education and clinical experience in this field. In response to this deficit within Virginia, the VIPC was implemented. The following relates its history and impact.

 

In 2005, within Virginia's legislation, the following House Bill (HB) resolution was introduced, (after falling short of votes in 2000-2004, a story in and of itself).

 

Resolution, Palliative Care HB 690/SB1020, stated: This legislative's goal is to increase palliative care in the Commonwealth of Virginia's by increasing the education and training of healthcare professionals in the techniques and benefits of palliative care and to increase patient awareness regarding palliative care as a treatment component, in order to improve the overall quality of life for those suffering from chronic conditions, and to more effectively and efficiently treat the growing population of citizens suffering from chronic illnesses.

 

This legislation initiative had four major elements, which became its talking points:

 

1. Palliative care is an important option. Palliative care and hospice care give patients with chronic or terminal illness an option when curative care may no longer be effective. It is care that treats the symptoms of disease, such as pain, depression, spiritual concerns, and concerns about family.

 

2. Many Virginians do not have access to palliative care. Palliative care is just now being added to medical school programs, so most doctors and nurses are not trained in palliative care. Information on palliative care is not readily available to healthcare providers or the public in Virginia.

 

3. Virginia needs a focal point for palliative care. The need for additional education and training of healthcare professionals was the major recommendation of the 2000 Palliative Care Study by the General Assembly's Joint Commission on Health Care. The study found that Virginia has excellent resources to support quality palliative and hospice care, particularly in our medical schools. Unfortunately, there is no focal point for distributing these resources to palliative care providers in our communities. However, other states have successfully addressed this problem with hospice and palliative care initiatives, and the Joint Commission's recommendation for more education and training is patterned after these successful programs.

 

4. Palliative care can improve the care of seriously ill patients and save the Commonwealth money. The initiative emphasized that indigent care is rising, that this would require no new taxes, and that cost control is important to Medicaid and indigent care funds. These cost arguments helped get the ear of state legislators but was never the primary reason, but a nice benefit.

 

 

After tireless lobbying with many supporters to include patients, families, numerous healthcare providers, the American Cancer Society, and Virginia's Hospice Association, the bill was passed and funded.

 

Resolution, Palliative Care HB 690/SB1020, was passed in 2005. It was funded in 2006 (governor's budget). This pilot project began in early 2006, with a $150,000 budget (budget of $750,000 was proposed; later a budget of $250,000 per year for 2 years was obtained). This is the first such legislation to date in this country!

 

Since 2006, over 200 healthcare providers as well as students studying a clinical profession from around the state have participated in the VIPC program. These individuals, whom we refer to as palliative care scholars, are offered the opportunity to have a one-on-one mentoring opportunity with board-certified clinicians (as available for each specialty), to explore the role of palliative care as well as hospice. These providers have included physicians (includes surgeons), nurses from multiple settings (including school nurses, college professors, intensive care nurses), pharmacists, social workers, chaplains, hospital administrators, and volunteer coordinators. These training or shadowing opportunities, which are individualized, offer clinicians the ability to gain insight as to the role that palliative care may offer within their setting, as well as demonstrating actual clinical practice techniques. All attendees learn how palliative care addresses the Joint Commission (JCAHO) pain and safety standards. All participants, who come with a set of learning objectives, interact with an interdisciplinary team to gain insights as to how roles may compliment and improve palliative care. Many of these clinicians have never worked in a team model of care.

 

Participants are given the experience options of a palliative care program with consult services, inpatient unit and clinic or a hospice with home visits, or inpatient unit options. The participants may spend 1 to 5 days as part of this program. To date, this program has assisted in the initiation of several palliative care programs within the Commonwealth of Virginia. The major opportunity within the hospice option has been a mentoring process allowing physicians, who are accepting hospice director roles, to gain insight, resources, and experience in this unique role. Of note, the vast majority of participants have elected the palliative option for this training.

 

Goals for the program participants are (1) to understand appropriate palliative care interventions, (2) to have a resource for seeking advice in difficult palliative care situations, (3) to strengthen palliative care throughout the state, and (4) to improve access to experienced palliative care providers.

 

The program supports a part-time coordinator, who arranges educational dates, sites, and distribution of all educational resources. All participants within this program leave with a tool kit containing a CD of selected educational resources, policies, procedures, and pain and symptom algorithms to help guide their practice. After their departure, they are also given access to the provider they trained with for the opportunity to ask questions, seek advice, or support to initiate or further their programs and clinical practice.

 

The program has also allowed the opportunity to offer several statewide educational symposiums for nursing home staff on palliative care issues within their settings. These have been attended by over 100 participants within the last 2 years. Coordination with several schools of nursing as well as a medical school within the state have allowed rural institutions with no clinical opportunities for palliative care to gain access for their students for insights as to the role this may serve in their future practice. The Veterans Administration hospitals have also utilized this program to further their palliative care efforts.

 

In conclusion, the VIPC program has increased awareness of palliative care within the Commonwealth of Virginia. The mentors, who are all experienced and board certified, continue to have the ability to offer support for clinicians throughout the Commonwealth. This support has allowed for ongoing collaboration and growth of palliative care in Virginia. The program continues to obtain funding from the Commonwealth, but it has been substantially decreased over the last few years.

 

We believe this unique program has improved the care of those within our state and increased access to care for our residents. This is in part due to the clinicians' improved awareness of the role of palliative care as well as being mentored regarding clinical interventions, which may impact pain and symptom management. We believe this program may serve as a demonstration project for other states or for national initiatives to improve palliative care.

 

Respectfully submitted,

 

Patrick Coyne, MSN, APRN, ACHPN, ACNS-BC, FAAN, FPCN

 

Thomas Smith, MD

 

Mary Ann Hager, MSN, RN

 

Brian Cassel, PhD

 

Barton Bobb, MSN, FNP-BC, ACHPN

 

Cameron Muir, MD

 

Laurie Lyckholm, MD

 

Carrie Cybalski, PMP

 

Virginia Commonwealth University/Massey Cancer Center

 

Thomas Palliative Care Program

 

Richmond and Capital Caring

 

Falls Church, Virginia

 

References

 

1. LeBaron V, Bohnenkamp SK, Reed PG. Community partnership approach to building and empowering a palliative care resource nurse team. J Hosp Palliat Nurs. 2011;13(1):31-40. [Context Link]

 

2. Walling AM, Cohen Fineberg I, Brown-Saltzman K, Wenger NS. An interdisciplinary educational program to improve knowledge and attitudes about an end-of-life symptom management protocol. J Hosp Palliat Nurs. 2011;13(5):309-315. [Context Link]