Improve your hospice's end-of-life goals for care and planning
Short play is major educational tool
One of hospice staff's biggest challenges is helping patients and families set goals for end-of-life care.
For some patients, the hospice referral arrives so late that there is too little time for satisfying goal setting; for others, there are barriers that make it difficult for the patient and family to meet their goals in the time remaining.
There are different ways of documenting progress made toward these goals, an issue that will be a bigger priority when the Centers for Medicare and Medicaid Services (CMS) of Baltimore, MD, release new hospice Conditions of Participation (COPs), as is expected early next year.
"The new COPs will be a more demanding set of regulations, and they'll [likely] require we look at outcomes of care, which isn't something we've done in hospice to any great degree," says Virginia Valentine, MS, RN, CHPN, director of performance improvement for Family Hospice and Palliative Care of Pittsburgh, PA.
The assessment hospices do initially as part of the whole care planning process is crucial, Valentine says.
"You might have a patient experiencing a lot of pain, and it might be a barrier to their thinking about anything else, such as getting out to their grandson's ballgame," she says. "It might be a matter of relieving that pain and keeping it at a level that they deem is comfortable for them, and then they can go on and do the things they want to do in life."
The spiritual component is important, and there may be psychosocial issues to deal with, Valentine notes.
"We look at physical symptoms and social interactions within the family and their own network," she says.
One of the barriers or challenges of end-of-life care planning is provider involvement.
It's important that physicians realize what patients' goals are, and this might require education and training about end-of-life goals, says Carol Schoneberg, end-of-life educator and volunteer and bereavement program manager for Hospice of Southern Maine in Scarborough, ME. Schoneberg and Valentine have been featured speakers about establishing end-of-life goals of care at national hospice conferences.
Schoneberg and Jill Bixby, a palliative care coordinator at Maine General Hospital in Augusta, ME, developed a 30-minute play that is used to teach physicians, medical students, and others about end-of-life care planning.
Called BOATING for Before Offering Another Treatment Identify New Goals, the one-act play was written by Bixby in 2000, based on a dream she had, Schoneberg says.
"She was trying to find a way to break into palliative care and reach doctors and get them to shift their thinking around hospice and palliative care," Schoneberg says.
Schoneberg took a look at the play at Bixby's suggestion and then put music to it and added hospice elements. The women worked on it together and then began to perform it, along with several other cast members, at hospitals, national conferences, churches, and other public forums, including the Annual Assembly of American Academy of Hospice & Palliative Medicine, held Feb. 14-17, 2007, in Salt Lake City, UT.
"We've performed it maybe 50 to 75 times," Schoneberg says. "Our target audience is to get physicians to realize what the patient's goals are and what they want at the end of life."
The play includes a binder, so it doesn't require memorization, Schoneberg says.
"Its main character is Ramona, who is dying, and there's no speaking in her role," she adds. "With each new treatment, Ramona takes on pieces of scuba gear; when the doctor says, 'You have cancer,' she puts on a wet suit; then he offers another treatment, and she takes on pieces of scuba gear."
As Ramona grows more ill, she puts on a life vest and, eventually oxygen tanks, looking very burdened and miserable with her treatment, Schoneberg says.
"One character is a spirit whisperer, who says, 'You have a choice, you can tell them you don't want to do this anymore,'" Schoneberg says.
Ultimately, Ramona stops treatment and climbs into a boat at the center of the stage, and then she removes all of her equipment, one by one, until she is free of everything and her doctor finally understands, Schoneberg adds.
"The play educates the audience about comfort care and what it is, and it leads to wonderful dialogues and discussions," she says. "We've done the play any place somebody asks us to bring it, including the University of New England, where we performed the play for 125 first-year medical students, who were a major target audience."
The play's script and a CD of music to accompany it can be purchased by other hospices and end-of-life care organizations for educational purposes in their communities, Schoneberg notes.
The Hospice of Southern Maine also helps to improve the community's end-of-life care planning through its one-year-old Living Well Program, which is a volunteer-based, non-clinical case management service for people with a life-limiting illness.
It's an introduction to palliative care for people who may be involved with curative medical treatments and who may or may not be considering hospice care when the treatment ends.
People who use the Living Well services typically are in their last year of life, often the last six months of life, Schoneberg says.
"They receive two social worker visits and one chaplain visit," Schoneberg says.
Other services include a program of care that monitors patients, reports changes to physicians, provides emotional and spiritual support, assistance with reading, writing, meals, counseling, respite breaks for caregivers, and volunteer assistance as needed.
"What we have seen is people feel comfortable with the Living Well Program, and they are being educated about hospice and end-of-life services and palliative care," Schoneberg says. "Eventually, many of them sign on to their Medicare hospice benefits."
For some people at the end of their lives, this type of program fits in better with their goals then going straight to hospice care, she notes.
"We're doing everything we can to reach out to the people who may not be hospice appropriate, but have clearly-stated goals, or sometimes they may be hospice appropriate, but don't want to sign on," Schoneberg says.
The program is growing through word of mouth, and it's served about 25 patients in the past year, she says.
"Probably half of the patients came over to hospice care," Schoneberg says. "Ultimately, that's our goal to increase the hospice's length of stay and see patients sooner."
Need More Information?
- BOATING, Hospice of Southern Maine, U.S. Route One, #1, Scarborough, ME 04074. Telephone: (207) 771-4770. The play script and music CD can be ordered for $49.95 plus $6.95 shipping and handling.
- Carol Schoneberg, End of Life Educator, Volunteer and Bereavement Program Manager, Hospice of Southern Maine, U.S. Route One, #1, Scarborough, ME 04074. Email: [email protected]. Web site: www.hospiceofsouthernmaine.org.
- Virginia Valentine, MS, RN, CHPN, Director of Performance Improvement, Family Hospice and Palliative Care, 50 Moffett Street, Pittsburgh, PA 15243. Email: [email protected].
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