Documenting Patient Wishes in Hospice

November 29, 2024

Discover the power of documenting patient wishes in hospice care. Navigate advance care planning and communication with ease.

Understanding Patient End-of-Life Wishes

In the realm of hospice care, understanding and documenting a patient's end-of-life wishes is a crucial aspect that involves two main components: the importance of advance care planning and the barriers that hinder effective conversations surrounding it.

Importance of Advance Care Planning

Advance care planning (ACP) plays a vital role in ensuring that an individual's preferences and wishes for medical care are known and respected, particularly towards the end of life. It enables individuals to document their preferences for care, designate a healthcare proxy, and outline their choices regarding life-sustaining treatments in advance. This not only empowers patients to have a say in their future medical care but also provides guidance to healthcare providers and family members in making decisions on the patient's behalf.

Despite the significance of advance care planning, research from Massachusetts, USA, highlighted several barriers to effective conversations on ACP and palliative care. These barriers include hesitation, lack of understanding and knowledge, discomfort, resistance among service providers, and differences in ACP policies across regions.

Barriers to Conversations on Advance Care Planning

Even though Massachusetts is a leader in ACP and palliative care services, statistics show that there is still a gap in end-of-life care discussions. In 2018, only 13% of adults in Massachusetts had conversations with a healthcare provider about their end-of-life care wishes, with fewer than 20% discussing their care wishes with a lawyer or financial planner. Surprisingly, among those who did not have these conversations, more than half expressed a desire to have them.

Healthcare practitioners and community-based professionals in Massachusetts have identified barriers at the consumer, service provider, and system levels that hinder effective conversations about ACP and palliative care. These barriers underscore the need for additional tools and support to enhance service providers' competencies in ACP and palliative care.

To address these barriers, it is essential to provide resources, training, and support to both healthcare providers and individuals to foster open and meaningful discussions about end-of-life care preferences. By breaking down these barriers, the quality of care and the alignment of treatment with a patient's wishes can be significantly improved in hospice settings.

Tools for Documenting Patient Wishes

In hospice care, documenting patient wishes is a vital aspect of providing patient-centered end-of-life care. Two essential tools for capturing and honoring these wishes are advance directives and values history. Understanding these tools is crucial in ensuring that patients receive care that aligns with their preferences and values.

Advance Directives Explained

Advance directives (ADs) are legal documents that empower individuals to express their healthcare preferences in advance, especially in situations where they may lose decision-making capacity. These directives uphold the principle of patient autonomy, allowing individuals to make informed decisions about their medical care, even if they are unable to communicate their wishes directly [2].

Common forms of advance directives include:

By completing advance directives, patients ensure that their desires regarding medical care are respected, providing clarity and guidance to healthcare providers and family members during difficult times. These directives serve as a roadmap for honoring a patient's wishes when they are unable to advocate for themselves.

Values History and Its Role

A values history is a comprehensive evaluation of an individual's beliefs, preferences, and priorities regarding their healthcare and quality of life. This reflection process aims to identify what brings meaning and purpose to a patient's life and helps inform decisions about the type of care they wish to receive as they approach the end of life.

When creating a values history, important considerations may include:

Engaging in a values history discussion allows healthcare providers and family members to tailor care plans that honor the patient's values and preferences. By openly sharing and documenting these important aspects of a patient's wishes, caregivers can deliver compassionate and ethical care that upholds the patient's dignity and autonomy throughout their end-of-life journey.

Facilitating End-of-Life Discussions

Engaging in end-of-life discussions is a crucial aspect of providing compassionate and patient-centered hospice care. Healthcare professionals play a pivotal role in facilitating these conversations, ensuring that patient wishes are respected and honored during this sensitive time.

Enhancing Communication Skills

Effective communication skills are essential for healthcare professionals when broaching end-of-life topics with patients and their families. According to the NCBI, patient-centered and family-oriented communication skills are vital in making end-of-life care decisions. Understanding how to communicate empathetically, actively listen, and provide support can help create a safe space for patients to express their wishes and concerns.

One key aspect of enhancing communication skills in end-of-life discussions is active listening. By actively listening to patients and family members, healthcare professionals can gain a deeper understanding of their values, preferences, and fears regarding end-of-life care. This, in turn, allows for more tailored and empathetic care that respects the individual's autonomy and dignity.

Role of Healthcare Professionals

The role of healthcare professionals in end-of-life discussions extends beyond providing medical care. They serve as advocates for patients, ensuring that their wishes are clearly understood and documented. According to Georgetown University School of Nursing & Health Studies, family members and clinicians can support patients by engaging in open communication, understanding the patient's values, and establishing official documentation to ensure ethical care decisions are made in alignment with the patient's wishes.

In hospice and palliative care settings, healthcare professionals must navigate complex decisions regarding life-sustaining treatments, symptom management, and emotional support for both patients and their families. It is essential for professionals to approach these discussions with empathy, respect, and a commitment to honoring the patient's autonomy and dignity.

By recognizing the importance of communication skills and the pivotal role of healthcare professionals in facilitating end-of-life discussions, hospice care providers can create a supportive and compassionate environment that honors the wishes and values of patients at the end of life. This collaborative approach helps ensure that patients receive care that aligns with their preferences and provides comfort and peace during this challenging time.

Changes in Care Communication

In recent years, the landscape of care communication has undergone a transformation, driven by the implementation of the 21st Century Cures Act. This pivotal legislation has had a significant impact on how patient care is communicated and coordinated within hospice settings.

Impact of the 21st Century Cures Act

The final rule of the 21st Century Cures Act, enacted in April 2021, has brought about a fundamental shift in the way healthcare providers share information with patients. This change mandates the sharing of clinical notes with patients as part of their care process, encouraging transparency and active patient engagement. By providing patients access to their clinical notes, clinicians aim to foster a collaborative approach to care, enhancing communication and building stronger partnerships between patients, families, and healthcare professionals.

The requirement stipulated by the Cures Act final rule ensures that patients have the opportunity to review and understand their medical records, empowering them to take a more proactive role in managing their health. This emphasis on transparency serves to strengthen the patient-provider relationship, ultimately leading to improved care outcomes and greater patient satisfaction.

Sharing Clinical Notes with Patients

As a result of the Cures Act final rule, clinical notes are now an integral part of the electronic information that healthcare organizations must share with patients through secure online portals. Patients should have access to eight specific types of clinical notes free of charge. This access to clinical notes enables patients to have a comprehensive view of their medical history, treatment plans, and progress, facilitating informed decision-making and enhancing their overall care experience.

Failure to comply with the requirements set forth by the Cures Act final rule can result in organizations being penalized for "information blocking," with potential fines of up to $1 million per occurrence. This incentivizes healthcare institutions to prioritize transparency and timely sharing of clinical information with patients to avoid costly penalties and ensure regulatory compliance.

The shift towards sharing progress notes with patients represents a significant advancement in care communication. By standardizing the access to clinical notes across different care settings, the Cures Act final rule promotes consistency, continuity, and patient-centered care. This evolution in care communication underscores the importance of open dialogue, information sharing, and patient empowerment in hospice settings.

For more insights on enhancing communication in hospice care, explore our article on spiritual support in non-religious hospice care and discover strategies for approaching sensitive topics in end-of-life care [4].

Benefits of Transparent Communication

When it comes to documenting patient wishes in hospice, transparent communication plays a pivotal role in ensuring that patients' end-of-life preferences are respected and honored. In this section, we will explore the positive outcomes of open progress notes and the impact it has on patient engagement and empowerment.

Positive Outcomes of Open Progress Notes

Recent studies have demonstrated that open progress notes can lead to overwhelmingly positive attitudes and experiences for both clinicians and patients. By offering full transparency through open progress notes, healthcare providers empower patients to be active participants in their care decisions. Patients can review the details of their treatment plans, understand the reasoning behind certain interventions, and ask informed questions during their hospice journey.

Open progress notes not only enhance patient-provider communication but also contribute to improved care coordination and patient satisfaction. When patients have access to their clinical notes, they gain a deeper understanding of their condition, treatment options, and prognosis, fostering a sense of control and involvement in their care.

Patient Engagement and Empowerment

Transparency in communication, particularly through sharing progress notes, is a cornerstone of patient engagement and empowerment in hospice care. When patients have access to their medical notes, they feel more informed, valued, and respected in the decision-making process. This increased sense of empowerment can lead to better health outcomes, improved adherence to treatment plans, and enhanced quality of life during their end-of-life journey.

As part of the Cures Act Final Rule, clinical notes are now required to be shared with patients through secure, online portals. This regulatory change ensures that patients have equal access to their medical information across various care settings, promoting continuity of care and patient-centric approaches in hospice [5].

By embracing transparent communication practices and actively involving patients in their care planning, hospice providers can create a supportive and collaborative environment that respects patients' autonomy and dignity. Encouraging open dialogue, sharing progress notes, and promoting patient engagement are essential steps towards honoring patient wishes and providing compassionate end-of-life care.

Compliance with Cures Act Final Rule

In the realm of hospice care, compliance with the Cures Act Final Rule regarding the sharing of progress notes is paramount. This rule mandates the requirements for sharing progress notes with patients and outlines the implications of non-compliance.

Requirements for Sharing Progress Notes

The final rule of the Cures Act necessitates that clinical notes, including progress notes, be included in electronic information shared with patients through secure, online patient portals. This access must encompass eight specific types of clinical notes and must be provided to patients free of charge.

Before this rule, individual healthcare facilities determined their own policies regarding data sharing with patients. However, the implementation of this regulation ensures that patients have consistent access to critical information across various care settings. By sharing progress notes, patients are empowered to actively engage in their care decisions and treatment plans.

Implications of Non-Compliance

Failure to comply with the Cures Act Final Rule can result in serious consequences for hospice care organizations. If an organization engages in "information blocking" by withholding or restricting access to clinical notes, they could face substantial fines. Penalties for non-compliance with the rule can amount to $1 million per occurrence.

Research on the benefits of sharing open progress notes has shown significant improvements in various aspects of patient care. Patients who are granted access to their progress notes report enhanced communication with healthcare providers, increased engagement in their treatment plans, better health outcomes, and a greater sense of control over their healthcare journey. The transparency enabled by sharing progress notes allows patients to be better informed, prepared, and involved in their care, ultimately leading to a higher quality of hospice services.

Ensuring compliance with the Cures Act Final Rule not only enhances patient-centered care in hospice settings but also fosters a culture of transparency, empowerment, and improved outcomes for individuals navigating end-of-life care decisions.

References


[2]:

[3]:

[4]:

[5]: