Ensuring Quality in Palliative Care Services
Most service providers and their subcontractors (e.g., Title III clinics) have been engaged in quality-related activities for nearly a decade. In 2000, new statutory requirements reinforced the expectation that grant recipients for all CARE Act titles would establish quality management programs. Current activities, however, tend to focus on “curative” interventions, rather than on the relief of pain and side effects of therapeutic interventions or other palliative care. For example, health-care-system-related measures often are limited to physicians, nurses, physician assistants, nurse practitioners, and mental health professionals who most often work in acute care settings. Outpatient and ambulatory care activities and measures tend to focus on clinical sites and related services rather than on home-based services and related programs.
Several organizations have begun to establish flexible and adaptable criteria for assessing and measuring the competencies for palliative care and related areas in quality management programs. Many organizations have constructed listings of competencies that are integrated into palliative and hospice care programs. The competencies involve physical, spiritual, emotional, relationship, communications (and subcategories), system negotiation, care delivery, and continuity-of-care issues. Quality standards have been written that apply to all professionals who provide care at the end of life: physicians, nurses, unlicensed personnel, social workers, therapists, spiritual care staff, volunteers, and others as relevant within their scope of practice. These standards are supplementary to competencies required of a person in providing excellent clinical care. Supportive Care of the Dying (SCD), a resource organization for end-of-life care, has developed a detailed protocol on competencies and their definitions (www.careofdying.org/Tools/ Competency_Assessment2000.pdf).
According to SCD, evidence of competency and performance is obtained by observation of a person’s performance; from interviews with and feedback from patients and families; and from case presentations, self-ratings, peer review, and patient chart reviews. SCD recommends reviewing performance annually, semiannually, or with significant evidence of excellence in performance, all accompanied by opportunities for performance improvement as needed. Table 3 is adapted from the SCD document.
| Focus | Description |
|---|---|
| Pain and symptom Management | Appropriately manages patient pain and other distressing physical symptoms of disease, illness, or treatment in a timely manner and achieves outcomes acceptable to the patient and family. Management can include referral to appropriate specialists and/or acceptance and support of the patient’s decision to include complementary therapies in treatment. |
| Emotional | Supports patient and family expression of emotional needs. Listens actively; supports as appropriate; and refers to support groups, other patients and families with similar conditions, and professionals with expertise in this area. May use open-ended questions: “How are you doing? How are things going in your life? What, if anything, are you feeling anxious about?” |
| Psychosocial | Provides an environment to support patient and family expression of psychosocial needs. Listens actively; supports as appropriate; and refers to support groups, other patients and families with similar conditions, and professionals with expertise in this area. Integrates this area with each interaction. May use open-ended questions: “How are you doing? How are things going in your life? How have things changed for you in your life? How are your spirits?” |
| Spiritual, cultural | Manages interactions to support patient and family expression of spiritual needs and strengths and cultural practices. Creates environment that allows integration of dialogue about spiritual issues within care experience. Refers to spiritual care staff and community resources as congruent with patient and family values. Communicates cultural care preferences to others. May use open-ended questions: “What is the meaning of this illness to you and for your life? What lessons would you want to share? How has your sense of time changed? What strength have you called upon as you go through this illness? What are the culturally specific care parameters you wish us to observe?” |
| Relationship; family and community | Addresses desires and needs for support from family and friends. Determines if there has been a change in family communication. Facilitates family communication of specific issues by structure of interactions. Provides anticipatory guidance for family members as they focus on their relationships. This may include reconciliation of relationships. Provides helpful tools and referrals for assistance with family communication. May use open-ended questions: “How have things been within your family? What messages do you want to give to each other before death occurs? How much change has occurred with your social relationships outside the family?” |
| Honoring patient care wishes | Understands and communicates patient and family end-of-life care wishes before crises or impending death. Honors wishes as care goals change from cure to comfort care. Only carries out interventions that make a difference for patient comfort or recovery. Supports patient and family when treatments are refused. Provides welcoming environment for family to stay with patient. |
| Dying and death | Identifies those who are approaching last days of living. Communicates honestly to patient and family about approaching death and gifts of last days. Speaks of death as a natural process and not as a failure of treatment. Determines patient and family wishes regarding place of death and seeks to have death occur where desired. Assists family in giving permission to die, to say “goodbye,” and to bring reconciliation to family relationships. |
| After death | Prepares family for events that occur immediately after death, such as making funeral arrangements and notifying agencies such as SRS, Medicare, and family attorney; assists in resolving financial issues, canceling appointments, and so on. This could be presented to the family in a packet. |
| Bereavement | Manages interactions with the bereaved to support communication of clinical concerns and questions as appropriate. Actively initiates referrals for support during bereavement. |
| Relationship | Establishes rapport with patient and family. Is viewed as “present, really listening, caring, and trustworthy.” Initiates contact with bereaved family as appropriate to relationship. |
| Communication | Is available physically and mentally for patient and family communication. Delivers difficult information honestly and clearly. Maintains hope by focusing on palliative care when cure is no longer possible. Focuses on helping patient and family live in a way that is meaningful to them. |
| Teaching | Assesses for knowledge and questions. Refers to appropriate resources for additional information and support. Provides anticipatory guidance about illness, treatments, possible outcomes, and health system issues. |
| Team collaboration | Provides care with a team approach that includes patient and family as integral and essential members of the care team. |
| Source: Adapted from Supportive Care of the Dying: A Coalition for Compassionate Care. Organizational Assessment: Personnel Competency/Performance. n.d. Available at: www.careofdying.org/Tools/Competency_Assessment2000.pdf. | |
To address the challenges of evaluating palliative care services, from 1999 to 2002, the CARE Act SPNS program funded an initiative (http://hab.hrsa.gov/special/palliative_paper.htm) that examined the following:
- Tools that can be used to assess client characteristics and program effectiveness
- Relationship of specific palliative care service programs to various titles in the CARE Act
- Costs and relative cost effectiveness of providing palliative services versus late-stage intensive care services, essential staff roles, and responsibilities related to engaging and sustaining clients in care
- Need for palliative services in jails and prisons and for other hard-to-reach populations, such as homeless people and people who live in rural communities.
Notwithstanding important findings from the SPNS initiative, several significant challenges remain for evaluating palliative services, including attrition related to early death, ethical issues related to randomization, timing of decision points, and difficulties collecting data from sick patients or exhausted caregivers. Current CARE Act data evaluation activities do not always include reportable measures related to specific palliative care services. Moreover, certain service categories overlap with each other, and it is not always clear whether a service (e.g., mental health counseling) was provided to deal with issues related to death and dying (or other palliative issues) or for an entirely unrelated issue.
Evaluators likely will be challenged for some time to translate research findings into program policies and changes to improve programs. Evaluation findings identifying specific barriers (e.g., policies or administrative challenges) to developing and sustaining palliative care services are needed. Once identified and described, the removal of those barriers will be critical to the successful integration of palliative care approaches into CARE Act programs.
Additional Resources
- Supportive Care of the Dying, a resource organization for end-of-life care, has developed a detailed protocol on competencies and their definitions that can be viewed at www.careofdying.org/Tools/ Competency_Assessment2000.pdf.
- Program evaluation tools have been identified by grant recipients of Promoting Excellence in End-of-Life Care and are included in the Introduction to the Evaluation of Technical Assistance Program. The information includes glossary and data elements and instruments for evaluating excellence in end-of-life care. The end-of-life program is a project of the Robert Wood Johnson Foundation (www.promotingexcellence.org).
- HRSA provides a comprehensive list of evaluation forms (www.hab.hrsa.gov/tools/topics/evalforms.htm) for clients and staff related to palliative care services, including the Palliative Care Outcome Scale, Missoula-Vitas, the Memorial Symptom Assessment Scale, Service Needs and Utilization, the Rapid Disability Rating Scale, and others.
- Evaluation of palliative care providers and education is provided by the AETC Center for Palliative Care Education, University of Washington, Seattle (www.uwpallcare.org).
- The National Consensus Project (www.nationalconsensusproject.org), a coalition of national palliative and hospice care providers and experts, has developed extensive recommendations and guidelines for clinical, psychosocial, spiritual, legal, ethical, and other services.
