Letting Goals Be Your Guide: A Program to Make Advance Planning and Palliative Care a Priority in Nursing Homes

Palliative care, as defined by the World Health Organization, is “an approach to care that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment of pain and other problems, physical, psychosocial and spiritual.” Nursing homes (NHs) are the site of death for 40% of Americans, and many NH residents have life-threatening illnesses associated with physical, psychosocial, and spiritual pain. Clearly, palliative care can play an important role in the prevention and relief of suffering among these residents.

The Program

The Making Advance Planning a Priority (MAPP) Care Program was designed to assist NH staff clarify resident care goals and identify NH residents who may benefit from palliative and/or hospice care. This program consists of: (1) establishing the palliative care goals of the facility; (2) articulating the care goals of residents; (3) understanding the goals of the clinicians; (4) collaborating with palliative care and hospice programs; and (5) empowering staff to provide palliative care.¹

Establishing Palliative Care Goals of the Facility
Facility goals can be based on an assessment of the current advance care planning and palliative care practices in the facility. A facility needs assessment can be accomplished by interviews with staff members who provide end-of-life care to residents, performing chart reviews for residents who have died, and conducting ongoing case studies to review deaths as they occur in the facility. A needs assessment must include the observations of those at the bedside. Individual interviews or focus groups can be used with an aim of discovering how the staff perceives end-of-life care practices in the facility. Interview questions may include:

• Will you tell me about your experiences with caring for residents as they begin to decline?
• Do you remember the last resident that died on your floor? • Did you know he/she was dying?
• Do you think the resident knew he/she was dying?
• Can you describe your role in caring for residents who are declining or actively dying?
• How would you orient a new staff member to the situation of a declining resident? What would you tell that individual who has never cared for a dying person before?
• What is the most important thing you do for residents as they experience distressing symptoms or are actively dying?
• Are there things you wish you knew how to do better or had more time to do for residents who are experiencing distressing symptoms or actively dying?

Chart review for residents who have recently died can also be used to discover the most salient needs of the facility with regard to palliative care. The domains to examine in the chart review may include:

• Preparation − Was the death anticipated?
• Advance Care Planning − Did the resident have an advance directive in place? Did the directive(s) guide the approach to care at the end of this resident’s life? Did the patient die following hospitalization?
• Pain and symptom management − Were pain and other distressing symptoms relieved in a timely manner?
• Spirituality – Was a spiritual assessment performed? Did the resident receive requested spiritual support?
• Bereavement – Did family members receive counseling regarding the availability of bereavement support? Were staff members offered bereavement support?
• Psychosocial – Did the patient die with family, friends, volunteers, and/or staff at the bedside?
• Family Satisfaction – Was a post-death family interview performed?²

From this needs assessment, the facility can prioritize goals and select objective outcome measures. Importantly, the facility should select conservative goals and easily assessed outcome measures. Overly ambitious goals and/or outcome measures that are time-consuming to collect will serve only to frustrate and disappoint well-intentioned staff. The staff can then develop an action plan with a detailed list of tasks and a timeline for completion of each task. To sustain momentum and accountability, discussion of the program goals can be incorporated into daily and/or weekly meetings.

Palliative Care Champions
An essential component of achieving facility goals related to palliative care is the designation of a “palliative care champion.”³ While the palliative care champion is responsible for oversight of the program, he or she should be encouraged to delegate specific tasks and involve as many staff members as possible in implementation of the program. The palliative care champion would ideally be a staff member who has been employed by the facility long enough to be familiar with the organizational characteristics of the facility, and who has a passion for improving the provision of palliative care in the facility. To be successful, this champion also needs to have the respect of the staff and an outstanding working relationship with the clinicians in the facility.

Website Resources for Advance Care Planning Tools

Center to Advance Palliative Care: www.capc.org
University of Colorado at Denver and Health Sciences Center Palliative Care Program: https://www.ucdenver.edu/academics/CUOnline/OnlineDegrees/PalliativeCare/Pages/PalliativeCare.aspx 
Brown University Center for Gerontology and Health Care Research: www.chcr.brown.edu  

Articulating Resident Goals
Several tools are available to assist in the identification of residents who are at risk of death and/or who may benefit from in-depth discussions about their care goals or other palliative care needs. Data from the Minimum Data Set (MDS) can be utilized to stratify patients into quartiles of mortality risk.4 The MDS data elements used to calculate the score include eight domains: (1) weight loss (5 or more lb in last 30 days or 10 or more lb in last 180 days); (2) male gender; (3) functional ability; (4) swallowing problems; (5) shortness of breath; (6) age greater than 88 years; (7) body mass index < 22kg/m²; and (8) a diagnosis of congestive heart failure. Scores divided into quartiles correspond to the likelihood of death in the next year. Scores of 0-2 correspond to a 7% probability of death in the next year, 3-6 to a 19% probability, 7-10 to a 50% probability, and 11 or greater to an 87% chance of death in the next year.⁴ An automated version of this tool is available at https://www.ucdenver.edu/academics/CUOnline/OnlineDegrees/PalliativeCare/Pages/PalliativeCare.aspx​ to import MDS data and generate reports listing the mortality risk quartile for all residents.

Another approach to identifying residents with palliative care needs comes from a study designed to improve hospice services in NHs. In this study residents were considered appropriate for hospice care if either the resident or surrogate: (1) expressed goals of care focused on comfort; (2) refused cardiopulmonary resuscitation (CPR) and mechanical ventilation (MV); and (3) identified at least one need for palliative care.⁵ Goals of care were defined using a single question adapted from the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment (SUPPORT) study. ⁶ This question asked if the resident preferred a course of life-prolongingtreatment (“A course of treatment that focuses on extending life as much as possible. But with this course of treatment you might have more pain and discomfort.”) and palliative care (“A course of treatment that focuses on relieving pain and discomfort as much as possible. But with this course of treatment you might not live as long.”). This study also used the Global Distress Index (GDI) of the Memorial Symptom Assessment Scale to assess ten symptom management needs. Six physical symptoms (pain, constipation, lack of appetite, lack of energy, drowsiness, dry mouth) and four psychological symptoms (feeling sad, worrying, feeling nervous, feeling anxious) were assessed.

Eight palliative care services were also assessed and included: (1) additional nursing support; (2) physician care focused on comfort; (3) practical support with personal care needs; (4) help with advance care planning; (5) counseling and emotional support; (6) bereavement support for family members; (7) spiritual support; and (8) visits from a volunteer to provide company for the resident.⁶ The Palliative Performance Scale (PPS), a modification of the Karnofsky Performance Scale, can also be used as a tool for prognostication and appropriateness for palliative care interventions.⁷ This is an 11-point scale designed to measure patients’ performance status in 10% decrements from 100% (healthy) to 0% (death) based on five parameters (ambulation, ability to participate in activities, self-care, food/fluid intake, and consciousness level). A copy of the scale is available at www.capc.org. Six-month mortality rates for three PPS categories correspond to 96% (for PPS scores 10–20), 89% (for PPS scores 30–40), and 81% (for PPS scores ≥50).⁶

Another tool, the Nursing Home Options for Life-sustaining Treatment (NHOaLoT) advance care planning tool was developed specifically to elicit the care preferences for NH residents.⁸ The tool presents six potential interventions to subjects including: physician visitation, hospitalization, CPR, MV, tube feeding, and hospice care. Pictures of patients receiving the interventions supplement the descriptions of each treatment. Following the description of each treatment option, the subjects are asked which of these interventions they would want if they had one of five clinical scenarios: stroke, fall, pneumonia, delirium, or abnormal vital signs. The tool is designed to stimulate discussion about preferences for care in the event of clinical decline, and begins to prepare residents and families for future health-related crises. The methods presented above for identifying NH residents with palliative care needs are just a few of many tools available. Selection of a tool should be based on the specific goals of the facility and needs of the residents. Regardless of the tools selected, pilot testing on a small scale is recommended before application of the tool throughout the facility.

Understanding Care Provider Goals
Understanding the goals of clinicians (physicians, advance practice nurses, physician assistants) and NH staff who are caring for NH residents is critical to developing a successful palliative care program. Prior to eliciting the goals of clinicians and staff, inform them of how the program will identify residents who have palliative care needs, and how the palliative care needs of the residents will be communicated to them. Describe the pilot testing strategy, and reassure them that feedback will be sought before implementation of the program on a facility-wide basis. While a staff meeting can likely be used to introduce the program to NH staff, convening a meeting of all clinicians to explain the goals of the program is generally not practical due to differing schedules. Individual meetings with each clinician to explain the reasons for implementation of the program will likely be necessary.

During these informational meetings with clinicians and NH staff, present objective information derived from the facility needs assessment, and outline the goals of the facility that were borne out of the needs assessment. Clearly outline how the program will impact their work. Provide narratives that illustrate the motivation for starting the program. Once the clinicians and NH staff understand the goals of the program, ask what their goals are related to the program. Some clinicians will welcome assistance in the identification of palliative care needs, while others will not be receptive to the program. Elicit any concerns and, where possible, tailor the program to accommodate the requests of clinicians and staff. Ask clinicians what the most effective means are for communicating information about resident palliative care needs.

Some clinicians may prefer phone calls, others may prefer faxes or e-mail. When notifying clinicians either by e-mail, fax, chart documentation, or by phone that the resident has unmet palliative care needs, the following response options may be provided: 1. The palliative care needs of the resident have already been addressed (ask the clinician to list the date of the progress note in the chart where these needs were addressed). 2. The palliative care needs of the resident will be addressed during the next visit (ask the clinician to list the date that visit is planned). 3. Refer the resident for a palliative care consultation. OR 4. Refer the resident for a hospice consultation. Goals of clinicians and staff members are critical to the success of the program. The palliative care champion should perform periodic assessments of how the program is impacting all individuals who provide care to residents, and modify the program as necessary; without their acceptance, the viability of the program will be threatened.

Collaborating with Palliative Care and Hospice Programs
Increasingly, hospices are offering palliative care programs that are sometimes referred to as “pre-hospice” or “bridge” programs. Because palliative care and pre-hospice/bridge programs are not covered under traditional hospice benefits, many services offered in hospice programs are not routinely available in palliative care programs. Additionally, copays and other charges may be associated with consultation from palliative care programs akin to those a resident may incur with other types of medical consultations. In a large facility with high medical acuity, establishing care goals and offering palliative care consultation as an option to residents and clinicians may result in dozens of requests for palliative care consultation. Pre-hospice/palliative care programs may not be equipped to respond to multiple consultation requests. Start by obtaining a list of all hospices in the area and inquire about the availability of palliative care consultation services. If such services are available in the area, important questions must be asked before embarking on a collaborative relationship:

• How long has the pre-hospice/bridge program been in operation?
• Who provides palliative care consultation? Is the consultation provided by a nurse, advance practice nurse, physician, or other? What is the caseload for each practitioner?
• Does the palliative care or pre-hospice/bridge program have the capacity to provide palliative care to NH residents?
• What services are available to NH residents through the palliative care program?
• How many consultations can the program perform each week?

Just as a pilot testing phase is recommended before facility-wide program implementation of the palliative care program, a pilot-testing phase is also recommended before initiating referrals regularly to any one palliative care consultation service. This phase should be preceded by a discussion of the facility expectations of the palliative care consultation service and should be followed by a debriefing session to review the pilot test cases.

Empowering Staff to Provide Palliative Care
If palliative care programs are not accessible and/or the facility prefers to train nursing facility staff to provide palliative care, many resources exist to educate NH staff on the provision of palliative care. Specifically, The Center to Advance Palliative Care (www.capc.org) website contains materials to educate NH staff from the End of Life/Palliative Education Resource Center (EPERC), Education on Palliative and End of Life Care (EPEC), and End-of-Life Nursing Education Consortium (ELNEC). Various presentations prepared by Mary Ersek, PhD, RN, and Susan Swinford, MSW, are available for download under the title “Long-Term Care Models: Integrating Palliative Care into Long-Term Care Settings.” The facility should designate an educational programming coordinator to select the teaching materials from this and other readily available Web-based tools based on the goals established during the facility needs assessment. This individual can also establish a timeline for completion of training and evaluate competencies.

The term “just-in-time learning” refers to the acquisition of knowledge or skills as they are needed. This approach can be an effective supplement to didactic teaching in the NH setting, and performing daily bedside rounds is an excellent way of facilitating this educational approach. Daily palliative care rounds would ideally include the nurse, nursing assistant, and educator. Prior to palliative care rounds, the nurse and nursing assistant identify residents who are experiencing symptoms such as pain, shortness of breath, fatigue, constipation, diarrhea, depression, or other distressing symptoms. These residents are targeted for bedside rounds, and after performing an evaluation, the educator provides practical “just-in-time” teaching related to symptoms affecting the resident. Importantly, all educational programming must consider the staff turnover rate in the facility and plan training accordingly. A failure to anticipate turnover will inevitably lead to frustration on the part of the palliative care champion and educational program coordinator.

Summary

Implementation of a palliative care program involves: (1) establishing the palliative care goals of the facility; (2) articulating the care goals of residents; (3) understanding the goals of the clinicians; (4) collaborating with palliative care and hospice programs; and (5) empowering staff to provide palliative care. Sustaining a palliative care program requires champions of palliative care who ensure that the program is integrated into the fabric of the facility by establishing and acknowledging the goals of all who contribute to the program.

The author reports no relevant financial relationships.