Preliminary Key Questions and PICOTS
We propose a set of key questions (KQ) that address the integration of palliative care with chronic disease management in ambulatory care.
- How can ambulatory healthcare professionals identify which patients with serious life-threatening chronic diseases are likely to benefit from palliative care?
- What guidance exists about how and when ambulatory healthcare professionals should engage patients with life-threatening chronic diseases with palliative care?
- What prediction models or tools exist to identify which patients are likely to benefit from palliative care? What is the evidence of the efficacy of these models or tools on diagnostic thinking, or patient outcomes?
- What triggers or other factors (patient characteristics or community markers) have been identified that may identify when and which patients could benefit from palliative care?
- What educational tools and resources have been developed for patients and caregivers to increase awareness and knowledge about palliative care options for patients with serious life-threatening chronic diseases?
- What is the evidence of the effectiveness of tools or resources in increasing patient and caregiver awareness, understanding of palliative care, and options for palliative care?
- What shared decision-making tools and resources have been developed for patients and caregivers about palliative care for patients with serious life-threatening chronic diseases?
- What is the evidence on patient satisfaction and outcomes for tools developed for value clarification and/or advance care planning for patients and caregivers?
- What training or educational materials are available for ambulatory care providers about how to integrate palliative care with ongoing chronic disease management for their patients with serious life-threatening chronic diseases?
- What training or educational materials are available for ambulatory care providers to improve awareness, knowledge, and understanding about the appropriateness of palliative care for patients with serious life-threatening illness? What is the evidence of effectiveness?
- What training or educational materials are available for ambulatory care providers to improve their skills in communicating about palliative care for patients with serious life-threatening illness? What is the evidence of effectiveness?
- What training or educational materials are available for ambulatory care providers to improve referral and coordination for palliative care services for patients with serious life-threatening illness? What is the evidence of effectiveness?
- What training or educational materials are available for ambulatory care providers to improve their ability to integrate palliative care with ambulatory chronic disease management for patients with serious life-threatening illness? What is the evidence of effectiveness?
- What are the different models[i] for integrating palliative care with ambulatory chronic disease management (e.g. shared care, consultative model, stepped care)?
- What is included as part of the palliative care "touch" for persons with chronic disease?
- What models are more appropriate for specific priority populations?
- What components of these models contribute to their effectiveness? For what populations? In what settings?
Q1–3: Community dwelling patients with serious life-threatening chronic diseases of uncertain life expectancy and their families, for example: patients with dementia, chronic obstructive pulmonary disease (COPD), patients with chronic kidney disease (level 4), patients with heart failure and their families
Q1: Prediction models, tools, or other triggers to identify patients for palliative care.
Q2: Educational materials for patients or caregivers
Q3: Shared decision making tools and resources for patients or caregivers
Q4: Training or educational materials for ambulatory chronic disease providers
Q5: Models of care for integrating palliative care with ambulatory chronic disease management
Q1: comparisons between tools
Q2: comparisons between educational materials or no materials
Q3: comparisons between shared decision-making tools and resources or no tools
Q4: comparisons between training or educational materials or no materials
Q5: usual care or comparisons between different models
Q1: Quality of life, satisfaction with care, pain management, others
Q2: Knowledge, awareness, understanding
Q3: patient satisfaction, quality of life, care agreement with values
Q4: Knowledge, awareness, understanding; communication skills; referral and coordination skills, palliative care delivery skills
According to the World Health Organization,2 "Palliative care is an approach 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 and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care … is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications."
Despite the potential for improvements in quality of life from palliative care, palliative care is underused, particularly for non-cancer and non-hospice patients that might benefit.3 The course and life expectancy for patients with serious life-threatening diseases including dementia, COPD, chronic kidney disease or heart failure is uncertain, however, they may nonetheless benefit from the integration of palliative care with ongoing chronic disease management. Some reasons for this underuse include "misunderstandings about palliative care, difficulty initiating a palliative care conversation, and the culture of the physician's unit and the patient and caregivers."4 In addition, payers may not cover palliative care.5 Furthermore, the current shortage of palliative care specialists is predicted to get worse due to physician burnout and too few training slots.6 There has been an increasing focus on training primary care providers to communicate more effectively on palliative care, directly provide palliative care and/or work with specialists and multidisciplinary teams to ensure that patients have access to needed care.7,8
AHRQ convened a Technical Expert Panel meeting on May 3, 2016 to gain a better understanding of the current practices, challenges, and gaps in integrating palliative care into ambulatory care for patients with non-cancer advanced life-limiting chronic illnesses, where life expectancy is unpredictable. Six TEP members described different models for providing palliative care services to non-cancer patients in outpatient settings such primary and specialty clinics, stand-alone clinics, in home settings, or through telemedicine.
Challenges and needs voiced by this TEP included:
- Need for improved coordination and understanding by non-palliative care providers
- Lack of understanding that palliative care is not the same as hospice care
- Training materials for non-palliative care providers and patients on advanced care planning
- Lack of knowledge (or consistent algorithms) for identifying patients for whom palliative care services may be appropriate
- Overlap between primary care and palliative care services provided (e.g. depression, pain, self-care, completing and advanced directive)
- Need for information about how to organize palliative care
- Lack of clarity regarding roles and responsibilities among palliative care team members
- Cost-effectiveness of different palliative care delivery models
- Models for providing palliative care in rural areas
- Culturally sensitive approaches to provide palliative care to specific populations
- Need for more information how to deliver palliative care
- Appropriate skill sets, and staffing ratios of members of palliative care team
- Lack of clearly defined work processes to ensure that everyone knows not only what to do but how to do, as well as to support continuity of care across settings, effective methods of communication among team members
- Lack of knowledge on "doses" of palliative care needed to control symptoms and prevent hospital admissions
- Cost effectiveness of different palliative care staffing models
At a meeting of Learning Health Care Systems held at AHRQ in January of 2019, palliative care was recognized as an important topic for health systems. Areas of interest reflected similar questions as the TEP and specifically included:
- Without access to palliative care specialists in their system, what elements of palliative care can be adapted to a non-specialist palliative care team to deliver the best care possible within the constraints of their system?
- What elements (or resources) are needed to develop a free standing palliative care program for non-cancer patients coordinated with usual primary or chronic disease care (e.g., what providers, skills, interventions, characteristics of the interventions)?
- Are there risk prediction models to help identify which patients would benefit from palliative care? Who are the patients that have been studied?
- How is a palliative "touch" defined in each model/setting?
A recently published RAND report9 comprehensively reviewed the different aspects of the delivery of palliative care, including interdisciplinary team care, care coordination, and other psychological, social, spiritual, and cultural aspects. However, the RAND report didn't address concerns that primary care or other non-palliative care specialists caring for patients with serious life-threatening chronic illnesses may be unaware of the potential benefits of, optimal timing for, or how to identify patients who may benefit from palliative care services or a palliative care "touch." Thus, AHRQ is commissioning a topic refinement and systematic review on Integrating Palliative Care with Chronic Disease Management in Ambulatory Care.
- Luckett T, Phillips J, Agar M, Virdun C, Green A, Davidson PM. Elements of effective palliative care models: a rapid review. BMC Health Serv Res. 2014;14:136. Published 2014 Mar 26. doi:10.1186/1472-6963-14-136.
- WHO Definition of Palliative Care. Accessed February 6, 2019.
- Kavalieratos D1, Kamal AH, Abernethy AP, Biddle AK, Carey TS, Dev S, Reeve BB, Weinberger M. Comparing unmet needs between community-based palliative care patients with heart failure and patients with cancer. J Palliat Med. 2014 Apr;17(4):475-81.
- Perrin, KO, Kazanowski M. Overcoming Barriers to Palliative Care Consultation. Crit Care Nurse. 2015 Oct;35(5):44-52.
- Ollive M. Why Some Patients Aren't Getting Palliative Care July 10, 2017. Accessed February 6, 2019.
- Kamal AH, Bull JH, Swetz KM, Wolf SP, Shanafelt TD, Myers ER. Future of the Palliative Care Workforce: Preview to an Impending Crisis. The American Journal of Medicine , Volume 130 , Issue 2 , 113 - 114
- Vergo MT1, Sachs S1, MacMartin MA1, Kirkland KB1, Cullinan AM1, Stephens LA1. Acceptability and Impact of a Required Palliative Care Rotation with Prerotation and Postrotation Observed Simulated Clinical Experience during Internal Medicine Residency Training on Primary Palliative Communication Skills. J Palliat Med. 2017 May;20(5):542-547.
- Paice JA1, Battista V, Drick CA, Schreiner E. Palliative Nursing Summit: Nurses Leading Change and Transforming Primary Palliative Care: Nursing's Role in Providing Pain and Symptom Management. J Hosp Palliat Nurs. 2018 Feb;20(1):30-35.
- Ahluwalia SC, Chen C, et al. A Systematic Review in Support of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, Fourth Edition. JPSM. 2018 Feb; 55(6):831-870. https://doi.org/10.1016/j.jpainsymman.2018.09.008