End-Of-Life Care: Are We Meeting the Need?

End-of-Life Care: Are We Meeting the Need?

Janet Lieto, DO, CMD and Stephen Goldfine, MD, DABHPM

ssisted living (AL) residences are designed to A care for the elderly while they “age in place.” Different facilities may offer various added programs or services as residents’ needs increase and change. These programs are designed to provide residents with help in managing their activities of daily living (ADLs) so that the residents may remain safely in an assisted living environ- ment. However, is there enough support available to allow residents to actually die in place in their assisted living apartment, while providing quality care, symptom management, and support to the residents, their families, and the AL staff? When residents medically and functionally decline to a point that a facility struggles to keep them safe, there are several available options. One option is to transfer the goals are palliative care, symptom frequently in AL is to face the med- resident to a nursing home or hos- management, or a “good death.”2 ical decline head-on by redefining pital. According to a National Cen- A second option is to optimize the goal of care for the resident, ter for Assisted Living (NCAL) 2000 the added services that a resident thus allowing him or her to die in survey, 33% of AL residents who may receive from their AL facility. place.” According to the NCAL 2000 left their assisted living apartment If the resident is still deemed un- Survey of Assisted Living Facilities, were sent to a nursing facility. This safe, a risk management agreement 28% of residents who no longer meant a loss of continuity of care or contract may be signed by both lived at an AL facility died.1 These for the residents, and the residents parties. In addition, families may in- residents should have the option to were not allowed to live out the crease the amount of supervision or die at their AL facility and not be rest of their life in a place they con- care provided to the resident by transferred to a nursing home or sidered home.1 This raises the ques- hiring “outside staff’ to help meet hospital. Educated residents and tion, “Does a patient’s independ- the residents’ needs. There are fam- families realize that at some point, ence and autonomy in making care ilies who have the resources to pro- chronic medical conditions, demen- decisions become void when there vide companions 24 hours a day, tias, or newly diagnosed diseases is a problem with safety?” Contin- 7 days a week to ensure that their are not going to be cured. In these ued-stay criteria for AL residences loved one is safe. This is a costly situations, residents and families have attempted to address this is- option to the family and relies on may change the goal of care from sue, but have not explored how the help outside the regular AL staff. curative with aggressive medical criteria may change if the resident’s A third option occurring more interventions, to palliative with

July/August 2006 Assisted Living Consult 27 symptom management interven- sion. Before a decision can be tions, so as to preserve independ- Table 1. reached, the resident and their fam- ence, quality of life, and dignity. Issues that Need to Be ily need to process information and How does AL meet the new Addressed in End-of-Life discuss it with other loved ones. needs of these residents? Frequent- Care in the Elderly4 Good communication with resi- ly, AL residences are turning to dents and families is essential when hospice organizations to help sup- • Goals of care dealing with end-of-life issues.4 port residents in the decision to re- Table 2 represents a stepwise proto- main in their assisted living apart- • Communication with residents col to help health care workers ment and provide the resources to and families when addressing end-of-life goals assure the resident is safe and will • Coordination of services with residents and families.4 Keep in not suffer. In addition, hospice or- mind that end-of-life discussions ganizations will support the families • Symptom management may result in an action plan that is a with spiritual, psychosocial, and be- including: compromise of what the resident, reavement services to help them – Physical symptoms family, and health care provider – Psychosocial issues through the end of their loved think is appropriate. The key is to – Spiritual symptoms one’s life. continue to readdress issues as the • The active dying process resident’s disease progresses or situation changes.4 Residents and fami- End-of-Life Care for Elderly • Grief and bereavement in Assisted Living lies continually need to process situ- Most people want to die at home, ations, and health care workers in their sleep, surrounded by loved than the resident or family to open need to allow ongoing discussions ones. Studies have demonstrated the line of communication about to help them process these changes. that residents want aggressive end-of-life issues. Frequently, resi- A resident or family may need “one symptom management to control dents and families are more ready more hospitalization” or “one more pain and shortness of breath, and than expected to have an initial round of antibiotics.” Often this will do not want to be a burden to their end-of-life discussion. Repetitive help them process a situation or ill- families or caregivers.3 hospitalizations and functional de- ness where, regardless of the inter- How do health care workers cline do not go unnoticed by resi- vention, the result will remain the help residents and families transi- dents and families! Health care same and their quality of life will tion from aggressive to palliative workers should be ready to have not change. When a resident is care in AL? Clinicians need to be this discussion no matter who initi- ready to make the transition to pal- proactive in discussing residents’ ates the conversation. When dis- liative care with the goal of care be- needs and conditions. In order to cussing the option of transitioning ing symptom management, facilities be proactive, clinicians, whether from curative to palliative care with should respond to make the transi- physicians, hospice workers, or fa- a resident or family, never expect tion successful. Facilities hold the cility staff, must themselves be edu- them to make an immediate deci- key to recognizing and accessing cated in end-of-life care, understand the options and services available, and be able to present Table 2. them to the residents and their fam- Stepwise Protocol for Successful Communication with 4 ilies. Table 1 demonstrates six key Patients and Families areas that health care workers must address with residents and families • The right setting is important for the discussion to achieve a successful end-of-life experience.4 • Determine the patient and family’s understanding of the situation The first step toward a successful • Ask what their understanding is and what they want to discuss end-of-life experience in AL is the discussion of the goal of care with • Determine what their expectations or hopes are the resident and the family, if indi- • Discuss realistic goals cated.4 Residents and families are constantly processing their experi- • Be empathetic with your responses ences with interventions and illness, • Decide on a plan and follow through whether health care workers discuss them or not. Sometimes it is • Understand that plans may constantly change harder for a health care worker

28 Assisted Living Consult July/August 2006 hospice services that can best help Coordination of Care: gle, well-defined action plan to meet the resident’s needs. AL and Hospice Organizations meet the ultimate goal of care. Successful end-of-life care in AL Hospice and the Medicare requires the coordination of care Obstacles for End-of-Life Hospice Benefit and services with hospice organi- Care in Assisted Living Hospice is a Medicare program zations.4 End-of-life care research Even when the coordination of paid for by the federal govern- in AL has demonstrated the impor- services between hospice organiza- ment under Medicare Part A. The tance of coordination of care for tions and AL residences exists suc- program benefits individuals who dying residents. Families recognize cessfully, there are many obstacles decide they no longer want ag- and value their loved one’s re- to be dealt with. gressive interventions to cure a quests to die “in their home” in disease or disorder. It supports AL.8 Residents consider AL staff as Regulatory Obstacles those beneficiaries who want to their extended family. However, fa- In a study that examined AL regula- receive services that will enhance cilities vary in their ability to pro- tions and surveyed AL administra- the quality of their life through vide hospice services for successful tors, state regulators, nursing boards, palliative or symptom management end-of-life care. As the needs of and professional nursing and pallia- of their disease. the dying resident increase, facili- tive care associations about aging in To enroll in a Medicare hospice ties do not have the training in place and end-of-life care in AL, benefit, the resident must by eligi- many obstacles were found.9 These ble for Medicare Part A, receive obstacles included inconsistent regu- care from a Medicare-approved lations from state to state regarding hospice organization, and sign a residents who needed skilled nurs- statement choosing hospice over Frequently, residents and ing care. Essentially, all dying resi- other Medicare-covered benefits to dents are going to need a higher treat their disease. In addition, the families are more ready level of care to treat symptoms that resident’s attending physician must than expected to have naturally coincide with the dying certify that the resident is terminal, an initial end-of-life process. Residents who sign service which is defined as having a prog- contracts upon admission to an AL nosis of 6 months or less.5,6 discussion. Health care residence may be asked to leave the Hospice services may be provid- workers should be ready facility when they require too many ed in a variety of settings, includ- to have this discussion hospice services because facilities ing the home, AL residences, nurs- fear they may be held liable if they ing homes, and inpatient hospice no matter who initiates continue to allow the resident to re- units. These services are provided the conversation. main in their apartment. The study by an interdisciplinary team, which reported that some facilities routine- consists of a physician, a nurse, a ly transferred residents to a nursing home health aide, a social worker, home or hospital unless they were and a chaplain or other spiritual receiving the Medicare hospice ben- support staff. Residents receive end-of-life care or staff ratios to efit to avoid being legally liable for regular nursing visits to assess and accommodate these needs. The the death of the resident.9 make recommendations for end- same research showed that even of-life symptom management. A when hospices provided services, Facility Obstacles home health aide may provide up AL and hospice staffs were un- Staffing in AL is set up to care for to 2 hours a day for 5 days a week successful in communicating and a resident’s needs on a 24-hour ba- of one-on-one care.7 Social worker coordinating their respective serv- sis. However, a resident’s needs in- and spiritual support are available ices.8 It is not enough just to pro- crease when they are dying and both to residents and their fami- vide hospice services in AL. To be symptom management is required. lies. In addition, hospices will pro- successful, both AL and hospice Staff may not feel comfortable with vide bereavement care for families, organizations need to maintain ef- caring for residents who are dying. as well as AL staff who are regard- ficient and effective communica- Nursing staff is not typically avail- ed as a resident’s extended family. tion with each other to keep able on site 24-hours a day, 7 days Some hospices even provide alter- everyone aware of residents’ and a week. Because an RN is needed native or complementary services, families’ needs. The dying resident to assess symptoms and administer including but not limited to, mas- needs an interdisciplinary team medications that are ordered on sage therapy, music and art thera- that includes the AL and hospice an as-needed basis, it becomes py, and pet therapy. organization staffs, but with a sin- (continued on page 34)

July/August 2006 Assisted Living Consult 29 country are recognizing the bene- reading the Bible, and praying. perfect illustration. fits of a total wellness approach According to Welk, “A caregiver “My husband has an aunt with for dementia residents. For exam- can offer consistency for those res- dementia and an uncle who is the ple, Lakeside Village, an Immanuel idents who are losing their memo- primary caregiver. A nonmedical Senior Living community in Oma- ries. They can’t always remember caregiver has been with them for ha, NE, features a wellness center, people, but they often appreciate 4 to 5 years, providing care for his which focuses on body, mind, and being involved in activities they aunt and assistance to his uncle. spirit, geared toward older adults previously enjoyed. A caregiver This caregiver returned to her in their senior living community as provides variation in their day and home in Jamaica to be married. well as in the city, according to helps fulfill their lives. We provide The uncle hired another caregiver Assisted Living Director, Debra 3 meals a day, but in addition, the to care for his wife, and he trav- Welk, RN. caregiver can help to remind de- eled to Jamaica as an honored Immanuel Senior Living is com- mentia residents to keep up their guest at the wedding. I think when prised of 5 assisted living and inde- hydration and eat small snacks. a trust level is built and people get pendent living communities in east- The caregiver gets to know the to know their caregiver, they mean ern Nebraska. Lakeside Village is resident and what they like to do. so much to you, they almost be- building a memory support center They’re so patient, many times come family.” ALC that is expected to open in the fall helping the resident complete a of 2007 where 12 residents will task over and over again like it’s Georgene Lahm is a freelance writer live. The Lincoln site already has a new thing every day.” and communications specialist, based such a center. Nonmedical care- That kind of dedication builds in Omaha, NE. givers currently help assisted living loyalty among residents and their residents who have Alzheimer’s dis- families, who come to appreciate Reference ease and dementia with certain ritu- the respite that a nonmedical 1. Milgram NW, Head E, Zicker SC, et al. Learning ability in aged dogs is preserved by als, such as visiting the wellness caregiver can provide. An exam- behavioral enrichment and dietary fortifica- center, going for coffee, walking, ple from Welk’s own family is a tion. Neurobiol Ag. 2005;26:77-90.

End-of-Life Care workers need to be ready to dis- References (continued from page 29) cuss palliative goals of care with 1. National Center for Assisted Living. Assisted residents who request symptom Living Independence, Choice and Dignity. Avail- able at: http://www.nacl.org/ virtually impossible to control management of their disease. about/concepts.htm. Accessed May 15, 2006. acute symptoms unless they occur To meet the resident’s goals and 2. Kissam S, Gifford R, Mor V, Patry G. Admis- during the time the RN is in the fa- manage their symptoms, the AL sion and continued-stay criteria for assisted living cility.9 If residents develop symp- staff and the hospice organization facilities. J Am Geriatr Soc 2003;51:1651-1654. toms in facilities where hospice need to understand the obstacles 3. Singer P, Martin D, Kelner M. Quality end-of- life care: patients’ perspective. JAMA 1999;281: services are in place, residents, to care and collaborate with 163-198. families, and staff should be edu- each other to overcome them. 4. Ogle K, Hopper K. End-of life care for older cated and encouraged to call the The provision of quality end-of- adults. Primary Care: Clinics in Office Practice hospice nurse to make an acute life care in AL will entail future 2005;32:811-828. 5. National Hospice and Palliative Care Organi- visit or provide advice on symp- changes of policies and regula- zation. Hospice Care: A Physician’s Guide. tom management with medications tions and enhanced communica- Alexandria, VA: National Hospice and Palliative that are available. If the resident is tion between AL and hospice or- Care Organization, 1998. able to self-medicate, he or she ganizations. 6. Centers for Medicare and Medicaid Services. ALC Medicare hospice benefits. Available at may utilize the hospice comfort http://www.medicare.gov/Publications/Pubs/pdf/ pack, which typically holds med- Janet M. Lieto, DO, CMD is a Hospice 02154.pdf. Accessed May 15, 2006. ications such as acetaminophen, Physician and Stephen Goldfine, MD, 7. Centers for Medicare and Medicaid Services. morphine, and lorazepam to man- Coverage of hospice services under hospital in- DABHPM (Diplomate of the American surance. In: Medicare Benefit Policy Manual, age symptoms. However, some fa- Board of Hospice and Palliative Medi- Chapter 9. Washington, DC: Centers for Medicare cilities do not have storage options cine) is Chief Medical Officer at and Medicaid Services: December 3, 2004. Avail- able at http://www.cms.hhs.gov/manuals/ for comfort packs.9 Samaritan Hospice, a not-for-profit in- Downloads/bp102c09.pdf. Accessed May 25, 2006. dependent community-based hospice 8. Cartwright J, Kayser-Jones J. End-of-life care Looking to the Future serving Atlantic, Burlington, Camden, in assisted living facilities. J Hospice and Pallia- Residents want to be able to age Cape May, Gloucester, and Mercer tive Nursing 2003;5:143-151. and die in place at AL that have counties and headquartered in Marl- 9. Mitty E. Assisted living: aging in place and palliative care. Geriatr Nurs 2004;25:149-156, 163. become their homes. Health care ton, NJ.

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