Adult day services relieve caregiver stress, boost outcomes
Collaborations provide benefits for agencies and patients
[Editor's note: This is the first of a two-part series that looks at the benefits of partnering with adult day service programs. This month, we look at the opportunities, benefits, and challenges of collaboration. Next month, we will learn about a hospice that started its own adult day service program.]
Although most adult day service programs report being familiar with hospice and about 50% of hospice programs report knowledge of adult day service programs, less than half of adult day service and hospice programs surveyed by Easter Seals have relationships with each other.1
The survey was conducted to provide a baseline of information for Easter Seals to use in development of program designed to support collaboration between adult day services and hospice, says Lisa Peters-Beumer, assistant vice president of adult and senior services for Easter Seals headquarters in Chicago.
"Hospice and adult day services share commonalities such as mission and audience, and their expertise is complementary," Peters-Beumer explains. The primary goal for both services is to improve the quality of life for patients while allowing them to stay in their homes as long as possible, she adds.
Barriers to collaboration between hospice and adult day services often include a lack of knowledge about each other's service, a perceived difficulty for adult day programs to care for patients with complex medical needs, and issues related to honoring do-not-resuscitate orders by adult day programs, says Peters-Beumer. Because education of each provider is one way to address these barriers, Easter Seals developed training modules that provide the information each group needs, she says.
"We interviewed hospices and adult day service programs that were collaborating to develop the modules that give information about pain management, grief, advanced planning, and other end-of-life issues that must be addressed in a collaboration," Peters-Beumer says. There are several models of collaboration that hospices and adult day services can both use to benefit clients, she adds.
Administrators at Midland Care Connection in Topeka, KS, developed their own adult day service program in 1992 as part of the hospice program, says Karren Weichert, president and chief executive officer of the hospice.
"The program was originally patterned after day hospice programs in England and included only hospice patients," Weichert says. The program did grow and now accepts non-hospice patients, including clients of PACE (Program of All-inclusive Care for the Elderly). Adult day clients cannot be violent or constant wanderers, and they must be able to assist with their transfer, Weichert explains. "Patients who require two staff members to transfer them are not appropriate for day service," she says.
Because her program is a medical model, clinicians are available to distribute medications and monitor the client's health, Weichert adds.
Consider the advantages
There are several advantages to collaboration with an adult day program, even if you don't have one within your organization, Weichert says.
"We have some hospice patients whose family caregiver must continue to work during the day, so adult day is a good option if the patient meets the adult day admission criteria," she says. "We have also referred the caregiver to adult day services when it is a case of the frail caring for the frail. One of our hospice patients was a man who had been caring for his wife who had Alzheimer's."
The wife met the criteria for admission to the day services program because she was not violent and did not wander, so the staff enrolled her in the program to give the man a break during the day so he could relax and know his wife was safe, Weichert explains.
To make sure that hospice and adult day staff members understand each other, each organization can provide inservice education to the other, says Janet Bahl, RN, director of provider services at Hospice of the North Shore in Danvers, MA. "Adult day can provide training to hospice about working with dementia patients, and hospice can provide education about grief and bereavement, end-of-life care, and palliative care," she says. "We also provide grief counseling for adult day staff members when a hospice patient dies."
Another advantage of collaboration with adult day is the opportunity to admit patients to hospice earlier than they might otherwise be admitted, says Bahl. "The adult day staff members see people a minimum of two days and often as many as five days a week," she says. "This gives them an opportunity to notice a decline in condition much sooner than a primary care physician would."
Bahl's agency collaborates with Spectrum Adult Day Health Program in Beverly, MA, which is not affiliated with the hospice. "Working with an adult day program requires a lot of preparation upfront and ongoing communication to make the relationship work well for patients, but it is worth it," she says.
Spectrum's program provides services for patients with Alzheimer's and other memory disorders, so Bahl's staff will refer some hospice patients to adult day services. "Many of our Alzheimer's patients are in nursing homes, but when they are in the home, our social worker will recommend day services to give the caregiver some respite," she says.
Back-and-forth communication vital
Regular communication between the hospice and adult day staffs is important to good patient care, says Pam Taylor, LICSW, MSW, clinical manager of Spectrum Adult Day Health Program. "We hold 'rounds' every four to five weeks at which hospice staff members and our staff members sit down together to discuss each of the hospice patients who are in the day services program," Taylor says. The patient review enables staff members to share information about the patients from both perspectives and address any concerns about the patient or the patient's caregiver, she says.
Although Taylor's staff often identifies patients who might be appropriate for a hospice referral, the regular rounds meetings give them a chance to ask hospice staff members' advice about patients for whom they are not sure a referral is appropriate. "We'll describe the patient's condition and the decline we've noticed without using their name," she says. "Having the extra support and people who can offer advice is very helpful."
If Taylor's staff is going to recommend hospice care to a client's family, her social worker and staff members will talk to the family. Many times the family is unaware that hospice care is a Medicare benefit that you can access before a patient is actively dying, says Taylor. "We explain that Medicare covers the service and that it will improve the patient's quality of life because pain and other medical symptoms can be effectively controlled," she says. "We also explain that the service might include aides and volunteers who can give the caregiver some additional support at home."
Members of Taylor's staff are careful not to promise the patient will be admitted to hospice. Instead they explain that they believe the patient is appropriate, but the hospice staff have to perform their assessment to see if the patient meets the admission criteria, she explains.
An extra benefit is that hospice admission does not require the patient to be homebound, as a Medicare home health admission would, so patients can continue to come to the adult day program, says Bahl. "This continuity of care and routine is very reassuring to patients and their families," she says.
Reference
1. Peters-Beumer L, Dexter J. ADS and Hospice Collaboration: National, State and Local Opportunities [Slide presentation]. Chicago: Easter Seals; 2010.
Survey shows awareness of adult day services
Opportunities for partnerships identified
The first step taken by Easter Seals in the development of a program that encourages the collaboration between adult day service programs and hospices was an informal survey through the National Hospice and Palliative Care Organization, the National Adult Day Services Association, and Easter Seals Adult Day Services Network in 2008. A summary of the results shows a need for more education between providers, but it also demonstrates an opportunity for both to enhance their ability to provide care to patients and families.
Adult day services responses:
Most are familiar with hospice.
Seventy percent have had one or fewer participants in hospice in past five years.
Seventy-two percent have recommended hospice to a participant.
Less than 50% have an ongoing relationship with hospice.
Adult day programs that do work with hospice have:
training for adult day about hospice and vice versa;
training provided by hospice about pain and symptom management;
referrals to and from hospice;
an average of 1.9 hours of training on end-of-life care annually for adult day staff.
Barriers to working with hospice:
lack of education about pain management (46%);
lack of staff with appropriate certifications or licensures (40%);
lack of private space (24%);
lack of time for individual care (29%).
Challenges to working with hospice:
difficulty of having clients with extensive medical needs in program (58%);
confusion or lack of knowledge about funding/reimbursement (46%);
resistance from family and other clients about hospice philosophy (10%);
staff attitudes about death and dying (11%).
Hospice responses:
Less than 50% somewhat or very familiar with adult day service.
Fifty-three percent have recommended adult day services to hospice families.
Hospice that do work with adult day programs offer:
training for adult day about hospice and vice versa;
training on pain and symptom management (38%);
referrals to adult day (50%) and from adult day (43%);
grief and bereavement programs (53%).
Barriers to working with adult day services:
cost;
lack of available programs in area;
transportation issues;
medication needs of patients and lack of staff to administer medications;
program would not honor do-not-resuscitate order.
9 collaborative services
Survey respondents identified the following collaborative services that can be shared with each organization to enhance patient care, include:
grief and living programs for dementia family members;
program of all-inclusive care for the elderly;
shared chaplain;
partners in education staff and volunteers can attend inservices held by both providers;
education sessions for community and caregiver provided by each organization;
grief training;
collaborative care planning and family meetings;
flexible attendance and care arrangements;
hospice on adult day services advisory board and vice versa.
Sources/Resource
For more information about adult day and hospice collaboration, contact:
Janet Bahl, RN, Director of Provider Services, Hospice of the North Shore, 75 Sylvan St., Suite B-102, Danvers, MA 01923. Telephone: (978) 774-7566. E-mail: [email protected].
Lisa Peters-Beumer, Assistant Vice President, Adult and Senior Services, Easter Seals, 233 S. Wacker Drive, Suite 2400, Chicago, IL 60606. Telephone: (312) 551-7189. E-mail: [email protected].
Karren Weichert, President and Chief Executive Officer, Midland Care Connection, 200 SW Frazier Circle, Topeka, KS 66606. Telephone: (785) 232-2044. Fax: (785) 232-5567. E-mail: [email protected].
To order a copy of Enhancing Community-Based Options for End-of-Life Care, go to www.easterseals.com/seniors. In the box under "Services for Seniors and their Caregivers," click on the title of the report, then scroll down to the list of products available. Cost of the hospice manual and CD is $79 plus $8 for shipping and handling. You also can call the National Hospice and Palliative Care Organization at (800) 646-6460 to order by phone. Request item 821589.
This is the first of a two-part series that looks at the benefits of partnering with adult day service programs. This month, we look at the opportunities, benefits, and challenges of collaboration. Next month, we will learn about a hospice that started its own adult day service program.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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