| Literature DB >> 33868897 |
Manisha Verma1, Marie A Bakitas2,3.
Abstract
PURPOSE OF REVIEW: The current healthcare system is not fully equipped to provide comprehensive support for patients with advanced liver disease (ALD) and their caregivers resulting in concomitant suffering and reduced quality of life (QoL). Integration of palliative care (PC) within routine care has demonstrated benefits in improving symptoms and QoL and reducing healthcare utilization for other serious illnesses but has been underutilized or delayed for ALD care. The purpose of this article is to outline the domains and benefits of PC and discuss the misconceptions and barriers for PC integration, and healthcare delivery models supporting PC integration within ALD care. RECENTEntities:
Keywords: Advanced liver disease; Models of palliative care
Year: 2021 PMID: 33868897 PMCID: PMC8035614 DOI: 10.1007/s11901-021-00562-0
Source DB: PubMed Journal: Curr Hepatol Rep ISSN: 2195-9595
Fig. 1A proposed model of concurrent palliative care for ALD, including transplant evaluation
Core competencies of a gastroenterologist/hepatologist training program
| Learning modules | Core skills |
|---|---|
| Module 1: Introduction to palliative care | Describe the scope and role of palliative care as part of an interdisciplinary patient and family care plan. Understanding the holistic concept of PC and how it is inclusive of supportive care from the onset of disease through the disease trajectory, including end of life care |
| Module 2: Communicating with patients and families | Practice effective communication skills with patients, families, and other healthcare providers, including responding to emotion, coaching in self-management of symptoms and distress. Applying motivational interviewing techniques to communication |
| Module 3: Psychosocial support | Conduct regular assessment of psychosocial needs using instruments such as distress thermometer |
| Module 4: Discussing goals of care and advance care planning | Describe the issues around transitions in care (e.g., transplant eligibility, transition to hospice) and key needs for patients and caregivers at these times. Developing goals of care and advance directives to document the decisions made |
| Module 5: Symptom management: physical symptoms and pain | Conduct regular assessment of physical symptoms using instruments such as Edmonton Symptom Assessment Scale, and apply evidence based medicine to manage the symptoms |
| Module 6: Symptom management: psychological symptoms | Conduct regular assessment of psychological symptoms using instruments such as depression screening, and apply evidence based medicine to manage them |
| Module 7: Spiritual care | Understanding the role of spirituality within medical care approaches; benefits of involving chaplains when needed |
| Module 8: Hospice care | Overview of hospice and when to refer patients for hospice services |
| Module 9: Survivorship | Enabling and empowering patients post-transplant and those living with cancer |
| Module 10: Care of the caregiver | Respond to common caregiver needs throughout the care continuum |
Consensus Recommendations for operational features of palliative care (PC) programs
| Domain | Features | ALD-specific features |
|---|---|---|
| 1. Program administration (mission alignment of PC program with institutional aims to improve patient centered care) | PC program staff is integrated into the management structure of the hospital and practice to align the mission and values. | - Transplant hepatologists include PC providers within their management structure |
| - Multidisciplinary care model for ALD includes PC providers | ||
| Needed: (1) a designated program director, (2) reporting mechanism in place | ||
| 2. Type of services (inpatient, outpatient, home based, telehealth) | A consultation service that is available to all inpatients; access to outpatient PC services and an inpatient PC unit | - ALD inpatients are consulted for PC as a part of routine care |
| - ALD patients getting discharged get an outpatient/telehealth-based follow-up PC appointment | ||
| 3. Availability (routine and emergency) | 24/7 access to PC providers for inpatients; access to outpatient clinics during the week, 24/7 telephone/ telehealth access, appointments available within 24–48 h | PC providers dedicated to liver service line, who can be contacted for consults |
| 4. Staffing (physicians, nurses, social work, chaplain) | Specific funding for a PC provider (board certified), PC certified nurse, trained staff to provide mental health services. Social work and administrative support staff | Hepatology department budgets to be inclusive of funds to support PC services |
| 5. Measurement | Key outcome measures: | Operational metrics for all ALD consultations. Customer, clinical, and financial metrics that are tracked either continuously or intermittently |
| - Operational metrics (# of consults, referring physicians, disposition) | ||
| - Clinical metrics: improvement in pain, dyspnea, and distress | ||
| - Customer metrics (patient/family/referring physician satisfaction with PC service) | ||
| - Financial metrics: cost avoidance, billing revenue, length of stay | ||
| 6. Quality improvement (QI) | Quality improvement activities, continuous or intermittent for (a) pain, (b) non-pain symptoms, (c) psychosocial/spiritual distress, and (d) communication between healthcare providers and patients/surrogates | QI within ALD care through research to assess the impact of PC services on symptoms, distress, and communication |
| 7. Marketing | Marketing materials and strategies appropriate for hospital staff, patients, and families | As an evolving specialty within ALD care, the PC program is responsible for making its presence and range of services known to the key stakeholders for quality care |
| 8. Education | PC educational resources for hospital physicians, nurses, social workers, chaplains, trainees, and any other staff the program feels are essential to fulfill its mission and goals | PC providers help develop educational opportunities and resources to improve the attitudes, knowledge, skills, and behavior of all health providers involved within ALD care |
| 9. Bereavement services | A bereavement policy and procedure that describes bereavement services provided to families of patients affected by the PC program | PC providers and hepatologists are required to offer an initial bereavement support for ALD caregivers |
| Make changes as needed through QI initiatives. Telephone or letter follow-up, sympathy cards, registry of community resources for support groups and counseling services, and remembrance services | ||
| 10. Patient identification | A working relationship with the appropriate departments to adopt PC screening criteria for patients in the emergency department, general medical/surgical wards, and intensive care units | To facilitate referrals for “at-risk” ALD patients,” ALD providers adopt screening tools within routine care |
| 11. Continuity of care | Policies and procedures that specify the manner in which transitions across care sites (e.g., hospital to home hospice) will be handled to ensure excellent communication between facilities. A working relationship with one or more community hospice providers | Coordination of care as ALD patients move from one care site to another becomes a standard part of care |
| 12. Staff wellness | Policies and procedures that promote PC team wellness. The psychological demands on PC staff are often overwhelming, placing practitioners at risk of burnout or other mental health problems | Regularly scheduled patient debriefing exercises within transplant care |
| Relaxation-exercise training and referral for staff counseling |
Models of palliative care: strengths and weaknesses (adapted from Verma M 2020)
| Model | Description | Strengths | Weaknesses |
|---|---|---|---|
| Hospital-based PC | PC team consulted during hospitalization | 1) Identified high need population | 1) Limited continuity of care |
| 2) Usually it’s too late for the patients to receive the plethora of benefits of PC | |||
| 2) Helps reduce healthcare utilization, and develop end of life care goals | |||
| 2) Limited number of PC providers available for high-needs inpatients | |||
| Outpatient PC specialty clinics | PC providers (MD, NP, RN) conduct standalone PC clinics | 1) Continuity of care is easily established | 1) Startup costs, overhead, and budgetary implications to be considered to launch these clinics |
| 2) Centralized services | |||
| 3) Allows for more day-to-day planning and resource allocation | |||
| 2) Need for additional support staff in the clinic | |||
| 4) Autonomy around concise and consistent referral criteria | |||
| 2) Scheduling challenges may be unforeseen due to the high volume of patients, but limited providers in these PC clinics | |||
| 5) Hub for education and research in PC | |||
| Community-based: home-based PC | PC providers conduct home visits and deliver PC at patient’s home | 1) Comfort at home is maintained, while PC continues | Limited availability and coverage |
| 2) Increased satisfaction with care | |||
| 3) Reduced hospitalizations and ED visits | |||
| 4) More at-home deaths | |||
| Community-based: telehealth-based PC | Utilization of remote technology to deliver PC | 1) PC providers can deliver care to patients irrespective of the distance, and patient’s willingness to return to clinics for additional appointments | 1) Reimbursement is challenging and varies across states |
| 2) Relies on technology, and is limited to those with access to the Internet | |||
| 2) Videoconferencing provides a glimpse into the homes and social contexts of patients, making PC more informed |
Verma, M., Tapper, E. B., Singal, A. G., & Navarro, V. (2020). Nonhospice Palliative Care Within the Treatment of End-Stage Liver Disease. Hepatology, 71(6), 2149-2159