Barriers to Effective Communication about Advance Care Planning and Palliative Care: A Qualitative Study
This study highlights a range of challenges that hinder effective Advance Care Planning (ACP) and palliative care conversations. Addressing these barriers requires a multi-pronged approach that includes provider training, resource development, culturally tailored strategies, and system-level changes to facilitate earlier and more robust conversations about serious illness care.
College of Health researcher(s)
College unit(s)
Abstract
Purpose
The purpose of this study was to identify barriers to effective conversations about advance care planning (ACP) and palliative care reported by health care and community based service providers in Massachusetts, USA.
Methods
This qualitative research analyzed open-ended responses to two survey questions, inquiring about perceived barriers to having conversations about ACP and palliative care with patients and consumers. Data were collected between November 2017 and June 2019 from nine organizations in Massachusetts, including health care provider organizations, health insurers, community-based organizations, and a nursing education institution. Two researchers reviewed and coded the responses and identified common themes inductively.
Results
Across 142 responses, primary barriers to ACP included hesitation and lack of understanding and knowledge, discomfort and resistance among service providers, lack of staff knowledge, difficulties with followup, and differences in ACP policies across regions. Common barriers to palliative care were misconceptions about palliative care and lack of knowledge, service providers’ lack of preparedness, and limited policy support and availability. Challenges relevant to both ACP and palliative care were fear and discomfort around serious illness discussions, lack of knowledge and awareness, discussions that occur too late, and cultural and language barriers.
Conclusion
Health care practitioners and community-based professionals reported consumer-, service provider-, and system-level barriers to facilitating conversations about ACP and palliative care with patients experiencing serious illness. There is a need for more tools and support to strengthen service providers’ ACP and palliative care competencies and to promote a structured approach to health care planning conversations.
Advance Care Planning and Palliative Care: An FAQ
What is Advance Care Planning (ACP)?
Advance Care Planning is a process that helps individuals of any age or health status understand and communicate their values, life goals, and preferences for future medical care. It guides medical decisions if a person becomes unable to express their wishes during a health crisis.
What is Palliative Care?
Palliative care is specialized medical care for individuals facing serious illnesses like cancer or heart failure. It focuses on managing pain and symptoms, reducing suffering, and providing emotional, social, and spiritual support to the patient and their family.
What are the key differences between ACP and Palliative Care?
While both ACP and Palliative Care emphasize communication between patients and healthcare providers, ACP is for anyone regardless of health status. Palliative care, however, is specifically for individuals with serious illnesses.
Why are ACP and Palliative Care conversations important?
These conversations are crucial for ensuring patients receive care aligned with their wishes, potentially improving their quality of life and reducing unnecessary or unwanted medical interventions. They also help families navigate difficult medical decisions.
What are some common barriers to ACP conversations?
Barriers to ACP conversations include:
- Patient Hesitation: Fear, denial, or a belief that ACP is only for the elderly or seriously ill can prevent individuals from engaging in these discussions.
- Lack of Understanding: Patients may not fully understand ACP or the importance of documenting their wishes.
- Provider Discomfort: Healthcare providers may feel uncomfortable initiating these conversations, fearing negative reactions or feeling unprepared.
- Systemic Issues: Time constraints, lack of follow-up, and variations in policies across regions can pose challenges.
What are some common barriers to Palliative Care conversations?
Barriers to Palliative Care conversations include:
- Misconceptions: Patients and families often equate palliative care with hospice, believing it signals giving up or that it's only for end-of-life care.
- Fear and Denial: Uncertainty about prognosis, fear of the unknown, and denial can make these discussions difficult.
- Provider Reluctance: Some physicians may hesitate to recommend palliative care, believing the patient isn't ready or having limited experience with this approach.
- Limited Access and Reimbursement: Lack of available services and inadequate reimbursement for community-based palliative care can hinder referrals and access.
What can be done to overcome these barriers?
Overcoming these barriers requires:
- Education and Awareness: Increasing public awareness and understanding of ACP and palliative care is crucial.
- Provider Training: Equipping healthcare providers with the skills and resources to confidently initiate and navigate these conversations is essential.
- Culturally Sensitive Approaches: Recognizing and addressing cultural and language differences is vital to ensure inclusivity and responsiveness to diverse needs.
- Systemic Improvements: Addressing time constraints, streamlining processes, and improving access to palliative care services are important for facilitating these conversations.
Where can I find resources to help me start these conversations?
Organizations like Honoring Choices Massachusetts offer resources, including conversation guides and training programs, to help individuals and healthcare providers initiate and engage in ACP and palliative care discussions.